All posts by Ariel Fixler

Loving Me Means Letting Me Go

By | Effects of Treatment on Patients, Friendly Advice, Help Communicating, Support and Healing Tactics | 5 Comments

By: Ariel Fixler

Loving me means letting me go. At this moment in time that is the most authentic way I can describe how I feel. One of the most compassionate, realistic, soothing melodies and lyrics came from the song “Let Her Go” by the band Passenger. It speaks to me on many “life-like levels”.

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What am I insinuating here? There may come a time when you do not want to fight anymore. Think of chronic and terminal illness as an abusive relationship where you just don’t want to fight the demons and physical abuse anymore. You are scared, scarred and you are angry.

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You are battered and bruised and have no physical skin left that is free of bruises and scars. Those same scars have infiltrated your mental and spiritual capacity.

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That metaphor is very similar to what it is like to fight the pain that coincides with a debilitating disease.

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Most people hold onto life while they are in chronic pain. The same brutal pain that is breaking them in many ways. WHY? Well to be frank, they are not holding on for themselves. They are fighting not for themselves, but for other people’s love, respect and belief in them. They want to be that fighter, that survivor, that warrior for them.

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They want to be loved and respected by everyone in their support system. No matter what your age, everyone wants to be a crusader of courage and make others proud to know them. They want to be associated with positivity.

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They want to set an example that will make people proud to know them. Many think fighting or pushing through the pain will make them a hero, a fighter (even when that is never want they desired to be). They don’t want to be a leader and well-liked anymore. They do not want to be in denial. Their point of illumination comes by informing others they no longer want to live a life that is pure pain. Guess what? They want to be honest and vocal about it and not be ashamed by these feelings and internal turmoil.

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They want to be thoughtful, enlightened and reflective. Everyone is looking for praise for their abilities, efforts and capabilities right? We live in a praise with a purpose type society.

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They are holding on for their support systems in order not to disappoint them. Is that fair or just placing their doubts and guilt onto them? Transferring the energy while transmitting the pain and blame.

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How do they accomplish that? By holding on even when they are losing their grip on life. By holding on even when their “fighting” spirit is shaky and subdued.  In their opinion, they are not living a life worth living, yet they also fear letting go, letting people down and death itself.  Only they can determine their quality of life. Their fears outweigh their reality and beliefs. They are confused about the meaning of their life.

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Their acceptance of themselves and their condition might not be in alignment with their support system and family’s views. You do not have to prove yourself one bit. You do not have to prove your assertions and feelings to ANYONE BUT YOURSELF. This moment, this choice, is finally FOR YOU.

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They are physically existing but shouldn’t their years be quality over quantity? Life often feels like a competition. Everyone is playing the one-upmanship game. “My life is better than yours” is a common theme on and offline don’t you think? How many years you lived and how much you have accomplished is a common theme. They need someone to tell them IT’S OK TO LET GO and free themselves of this lifelong competitive spirit.

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What’s scarier continuing on with your life in such deep emotional and physical pain? Or sticking it out? That may cause resentment. Or is it more soothing and realistic to try letting go and letting yourself roam free. The irony is that you may be finally living in the process of releasing your burdens and pain.

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They don’t want to live a life looking in from the outside. Vocalizing their emotions and fears does not make them weak. Letting go allows them to imbue the bravery they always wanted for themselves. The “C” in their character stands for COURAGE.

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If you haven’t felt an overwhelming sense of belief, peace and faith during your illness, that may come when you finally let go.

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If your anger has overtaken your mind, body and spirit those feelings may dissipate when you let go. When your body is failing you, your strength may come from letting go.

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You need to make sure you are holding on for YOU and not ANYONE ELSE. You may have spent your whole life trying to please others and forgetting about your own wants and needs. You think catering to others was your badge of courage and character. IT IS NOT. The subservient cycle can be broken. Maybe this is the time you stop being selfish and start being selfless. You no longer need to give into the pressures that are causing pain and resistance. This may be the time you put your desires first. You can give into to the disease, the mind and body altering pain medication and their side effects. You can allow your decline instead of fighting a losing battle. You can still be brave. That choice alone is incredibly courageous.

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Your life is like a magnetic force. What do I mean by this scientific assessment?  Only certain pairing of ions can come together to bond and build strength and create functionality. If you pair together the wrong ions (ones that do not complement one another) they create friction instead of cohesive connectivity. That is what chronic and terminal illness feels like. It feels like you are constantly pairing together the wrong ions, creating a push and pull effect that feels forced and harrowed. That pushing ultimately creates more pain and frustration. You are pushing to create a match, a fit and a normal ionic energy space for yourself in the tough world. You can’t force that connection and are therefore left feeling pain. Much like a relationship, friendship or job that doesn’t really feel right anymore, you just have to accept it, release it and move forward.

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Positive And Negative Written On Piece Of Paper

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You need to let go of the ill-fitting forces in your life. The pieces of the puzzle that no longer fit together. A puzzle that used to take mere minutes to finish now takes days, weeks or months. So instead of forcing something that doesn’t work, maybe it is better to let go. You can hope to find the right energy in the afterlife and afterglow.

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You should know part of letting go of your pain, your life, your fight, means finally losing your grip on the control button.  You have to have faith the people you love will mourn you in the way that best suits them. You have to hope you won’t be a topic to be mourned and thought of for a fleeting moment, day or week after your passing (like a trending topic). You have to hope you will be a memory to be treasured and revisited.

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Facebook now allows you to designate someone who can be in charge of your social presence after your passing. Think about that new designation, in a way social media is helping you start the process of letting go and at the same time creating your future footprint even after you pass.

https://www.everplans.com/articles/facebook-legacy-contact-the-social-media-giant-acknowledges-death-more-realistically 

The song that inspired this post is below:

The Finality Of Death?

By | Effects of Treatment on Patients, Friendly Advice, Help Communicating, Support and Healing Tactics | 6 Comments

By: Ariel Fixler

Is there a sense of finality in death and is a goodbye really a goodbye? I wish I could give everyone a definitive answer. I have always been more inclined to focus on the hellos in life rather than the goodbyes. I have always been more focused on bringing people together and connecting them rather than alienating them with painful goodbyes and sorrow filled moments. I understand the need for closure and people’s need to make sure everything is A-OK (before someone passes or even moves on to another station in life). Let’s be frank here, that doesn’t always happen in the nick of time. We can plan all we want, but when it comes down to it in the end, nothing can be mapped out the way we had imagined. That remaining time might be allotted to escaping the pain and letting go. I know right now I identify whole-heartedly with the saying “loving me is letting me go”.

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I know I spent any moments I was awake with Netflix watching Frank Underwood’s regime of meticulous power play on House of Cards. Though the first episode of season 3 was brutal to watch, as someone who is in constant pain, feels helpless and powerless to circumstance with limited mobility and function. I really identified more than I would care to admit. I’m sure most people were bored with (as it wasn’t an episode filled with political chaos).  I found it real and raw to be in that much pain. I was reminded of what it was like to be struggling to stay away from narcotics as a crutch to subdue the pain (pain meds are always pushed on you). So that viewing process wasn’t a true escape. http://www.mindbodygreen.com/0-10297/over-prescribed-america-infographic.html

So I tried to tune into to lighter fair like the new Ellie Kemper’s Doomsday Cult Comedy series on Netflix, Parks and Rec and Broad City. But my favorite series that brought me back to my childhood was VH1’s (yes I said VH1) Hindsight. An amazing retro 90’s show that was funny and so smart. I can’t thank Evan Hodes enough for introducing it to me (his best friend Kenny Neibart of Entourage fame wrote the series). It was a wonderful surrender and escape. There is nothing better than a throwback series that gets it right on many levels and connects your past with your present in a wonderful way.

http://www.vh1.com/shows/hindsight/

We get so many of our ideas about pain, discomfort, closure, life and death from television and film that we forget what our beliefs on the subject truly are. We get lost in the illusion of death and not the reality of the situation and finality of death.

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That is not to say I don’t constantly think about death lately and that it doesn’t fill me with fear, remorse and sorrow. Sometimes I wish I was unaware of what was going on around me. That my pain could be lost physically and my anguish less pondered and questioned mentally. I wish my need for closure was not front and center. Worse there is nothing I can do at this stage to initiate all the closure I desire and feel I deserve. I have to make peace with the fact of a less than “peaceful” existence and departure.

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I wish I could really lose myself in binge viewing or some distraction and not truly concentrate on it. I pretend I do but it’s not really a mind-altering distraction. It’s just Netflix Noise. I can never properly shut down my brain and escape.  I don’t envy my father or anyone with Dementia by any means. That being said, I do envy not being aware of your own mortality and suffering, even if just momentarily (for flashing moments in time). To lose yourself in being less cerebral could be a break from reality in a positive sense (especially when you are physically suffering). I know the confusion and lack of awareness is not something anyone wants in their life, but when it comes to grave suffering and saying goodbye it may be a mixed blessing.  To have your fears not be so concentrated, forward in your thoughts and questioning may be a true way of way letting go and ushering out what will be more fluidly. To be relieved of that burden and that thought process, even if just for a moment in time to me seems like a possible blessing in disguise at times. I know that is a controversial statement but think about it and read it over again and you may not feel that same controversy in the content.

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I don’t have some grandiose and white light esque vision of death. I know I have been an avid viewer of television and film. What we see in that medium is not always what we get when it comes to life’s finale curtain call right? So I could get many ideas of how death could be scripted and how life could end. The mediums where finality and series finales are wrapped up rather neatly or succinctly are not true “reality”. There are plotlines that leave people feeling satisfied for investing their time and energy into the series. Do you get that feeling of satisfaction or relief in death? You invested time in your narrative. Did it pay off? Since we the took time out of their lives to spend time with these characters on a weekly basis we deserve a fitting ending right? So the writers and creators want to satisfy you in the finality of a series or a film. But as we know that does not always happen (both in a scripted series and in life). That isn’t real life, authentic life and that isn’t death either. Life isn’t scripted and series finales may not meet our satisfaction needs.

You can try to hyper plan and control your own ending, destiny and fate as much as possible but it will never be perfect. Death is where you finally are OK with losing control and finally letting go. That is not to say there isn’t pain, but that same pain may be quieted by comfort. You can turn the volume down, way down and finally press MUTE. You don’t have an edited script for your exit, no one is giving you the right words to say and the right actions to take on before you pass.

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You can hand over the reigns of your life to someone, a new creative force, a new energy, a new life force, a new spirit sister or brother. I don’t know if I believe in the afterlife.  I believe in this life. I don’t know if my mind understands life after death. I don’t know if I am that creative in my vision of the afterlife (sorry to let you down). I don’t know if I believe in heaven or hell either. I do believe you can choose how you want to be remembered and that your spirit can live on through other people (and you may not even who those people are). That is why life is cyclical and a force to be reckoned with.

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People may associate moments and memories with you or have your words breathe new life and new energy. You are not defined by one specific character arc, one event, one action or interaction. I choose to believe death can be peaceful. I choose to believe death can bring peace to not only your body but also let your mind roam just as freely. That you are reunited with your loved ones in some form or another (even if just for a moment in time). I don’t think you are all gathered physically somewhere in the afterlife. I see it more as your spirits are united, that your life force that has now ceased to exist physically on earth, directs you towards the ones you have missed while you were alive. That gift of connecting you to those forces of former life (your loved ones) is the universes final act.  It is a thank you gift so to speak. It may be your reward or consolation for any suffering or remorse you felt because of the loss of your life (or the lives of ones you have lost).

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This is not to say death doesn’t scare me.
I have anxiety about death. I am fearful.
I am remorseful. I am reflective.
I also have the distinct comfort of knowing I will be out pain.
I will be free of the physical and mental shackles that terminal illness has brought me.
I won’t be trapped in my own body, like it is a prison, while quietly being a viewer of life from the outside looking in.
My mind will be as still and quiet as my body.

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Below is the finale of the HBO show “Six Feet Under”. The title of the episode is called “Everyone’s Waiting” which I find fitting and comforting. It is the best finale I have ever seen in my life. That is not hyperbole or me preaching to have new people binge watch the show. It has been off the air for 10 years now and I don’t work for HBO. The content of the show is still relevant as ever. That is not to say this my favorite series of all time but I sure liked it a lot. I liked it more because the show began during my college years, but yet like the Sopranos, it was a unifying force in my home. A familial bonding experience. I watched it with my family (like many HBO shows). We binged watched the show before binge watching was trendy. You know when HBO used to marathon their series on their channel regularly. HBO is/was as commercial free and seamless as Netflix. It was my sweet reward after my finals in school or after my internship on the film sets. My family loved the show as well.

When HBO used to re-air episodes even after the series ended (on their signature channel HBO-S) I would always stop what I was doing and re-watch it. Maybe I would pick up on some subtleties and messages I missed the first time (because of my age and overall life experience). You know what? I gained so much on additional viewings. Watching it in my early 20’s versus my late 20s and early 30s was a game changer on the meaning of life, death and finality.

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The show was about loss, but more importantly it was about facing a life that is not perfect. Life where death, disease and conflict is all around you. Family is far from perfect. Yet, the show was real, it was raw and most importantly it was authentic about finality. It was candid in its approach regarding the possibility of the afterlife (for those who choose to believe in it). That voice, that vision, could be the same person they all lost, but the meaning of their message was different for every character. It showed that death was the end for some people and for the more imaginative it was not. There were life forces all around us. These forces were guiding us, advising us as if they were still with us.

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The show and the finale brings me so much comfort when I think about death:

The moments where it scares me and makes me feel alone and afraid.
The moments where I am angry at the goodbyes I didn’t get to say.
The moments when I mourn the peace I was unable to make.
Where I feel that indescribable chill of not being around for more of the moments in life.
When I want to mourn a curtailed existence.

That same life I have also missed so much already because of my illness. During those times, I look at this video and I remember that life can move on. I am reminded that life can be beautiful. I am hopeful that maybe, just maybe, death can be just as beautiful and peaceful.

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I cry every single time I watch the final scene of the finale. I don’t cry because I am overwhelmed with sadness.  I mean the clip is sad but not in a gut-punch way. It is sad because it is able to say so much about life and death WITHOUT ANY WORDS AT ALL. As soon as I hear the Sia song “Breathe Me” 3 minutes and 30 seconds into the video, I am overcome with peace and comfort. I usually actually just start the video at that part. That a show that portrayed life and death in such a real and authentic manner decided to portray how they viewed the finality of life in such a beautiful manner. Even better no viewer of the show expected the final 10 minutes that changed the course of how series finales should be. It just seemed like a normal finale but then it hit you this was very different. You knew innately the finale would stay with you for a long time. I mean it stayed on my DVR for 5 years. I would rather have a faulty Time Warner box than give up the finale.

The show and the finale made death comforting and artistically pleasing.  It connects all the characters in both life and the after life.

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The final scene brings together the theme of family and friends. It ties into the theme that people are quietly watching over you during moments you need comfort, during moments you need to let go. The finale scene shows everyone is connected. The final scene shows that everyone is loved, supported and comforted in their due time. Wait, be patient, your comfort will come. The show displays the people you love can be your family, extended family and friends. Nothing defines you anymore especially your death. You don’t have to be a fan of the show to watch the finale. You don’t have to understand anything about the series to see the beauty in it all.  The message of the finale is simple and cohesive. I am constantly chilled by the music and visuals. I also find it so comforting that the musician, Sia, whose song soundtracks this final scene, is now very famous and deservingly so. She is not famous in an attention seeking way. She doesn’t show her face in performances. My friend Lissy named her daughter Sia which always made me smile.

Sia (the singer) is anonymous and famous at the same time. I feel it’s very fitting to the message that people are all around us and we might not be aware of their physical presence or spirit, in life and the afterlife.

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This finale was shot ten years ago and till this day whenever I hear the song “Breathe me”, I get chills. I feel a need to be comforted and watch the finale immediately. I hope you take ten minutes in your day to see why this final scene is so moving, comforting and peaceful. I hope it fills you with the same peace it fills me with. I hope it takes away some of your fears and helps you cope in moments that seem incapable of comfort.

Six Feet Under Final Scene:

Link: https://www.youtube.com/watch?v=eNwARV9tPUw

What Dreams May Come

By | Effects of Treatment on Patients, Friendly Advice, Support and Healing Tactics | 3 Comments

By: Ariel Fixler

Dreams for many patients are a true form of escapism. It is our way to close our eyes and effectively close our minds to our reality and our pain. In our dreams we can be living the life we were supposed to be. We are not actively jealous, angry and feeling we are missing out on every life moment that matters. We can internally dialogue which can be the most effective way of communicating with our inner selves, our wants, desires, needs and wishes. We are living our lives before our illness. The future and present we were supposed to have and watch it like a wonderfully unscripted series we can binge watch, pause and return to and absorb.

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We are living our best selves in these dreams. We can dwell in the land of possibility and discover the known and unknown.

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In our dreams we are surrounded by our family or friends. Everyone you love can finally meet, come together and band together for you. There is no hyper scheduling and planning for visits and other people’s schedules and needs. Your dreams are selfless and accommodating of all your needs. You come first and you drive your life home. You are a leader. You are not a silent observer.

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It is a place where no one asks, “How Are You Feeling”? It is a place we are able to swallow, understand what a synced and in tune body and mind is. There are no side effects in your R.E.M cycle. There is only effective living. It’s a place where we can just exist. It’s a place where you do not want to interrupted. It’s place you don’t want to leave. It’s a safe haven where words cannot hurt, where actions cannot touch us and where our body cannot fail us.

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When we wake up from our dreams our mind is clear but our body is heavy. We debate if our awake world is as complimentary and generous to us as our dream life. In our dreams we can have moments with people who are no longer with us. We can eat what we want to eat and have quality time saying what we always wanted to say. We can mute the interruptions and white noise. We can eye roll privately and snark in silence. We can poignantly observe others and peek inside them and ourselves in a way we can’t do in our alert and awake hours.

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Being awake and present makes us face our reality in a painful and visceral way. In a way we may not want to so we put our head down and close our eyes. In this escape, we are out of our mind and our body (albeit briefly) and enter a world of “What could be and What Ifs”. We even can see what has been, visit our past, write a new ending and make peace with any roaming hostility in our formative years and current life. Dreams show us we can still grow, make amends and make peace with our anger, passive aggressive thoughts and general indifference. Actions we may not be able to undertake in our waking hours. There is more room for personal, professional and emotional growth in our dreams.

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So every instant a patient is asleep (whether it be a few hours or up to 24 hours) try to let the patient be. This may be there only real reprieve for their body, mind, spirit and soul. Sometimes sleep is a better way to normalize us. It can be more comforting and an escape tactic that is more effective than visitors or any form of binge viewing. We don’t have to be “on” for people. We are finally allowed to put our finger on the off switch and see ourselves lit up. We can see our wishes ignited in our dreams. In the same way we power down our devices to unplug and refresh the functioning our computer’s operating system. Sleep is the best form of escape. Sleep can also be a glimpse into a better overall functionality and communication.

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Patient Advocacy Versus Victimization

By | Effects of Treatment on Patients, Help Communicating | One Comment

By: Stacey Miller

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(Ariel and Stacey in Austin in 2004. I was showing her what Cystic Fibrosis does to your lungs in a humorous manner).

About the author:
Stacey Miller:
Stacey Lynne Miller works in film and television production in Atlanta, Georgia. She is 35 years old and was born in raised in Compton, California. She is a product of public school education and scholarship programs. She attended Rice University undergrad and attended graduate school at Clark Atlanta University.  She was diagnosed with Cystic Fibrosis at birth. She volunteers for patient advocacy programs at Emory University Hospital. She also heads up a Cystic Fibrosis support group for minority advocacy in the greater Atlanta area.

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We can all be a victim of circumstance. We can all play the blame game. We can all blame the cards we are dealt in life for who we are and how we conduct ourselves. We can be powerless, we can fall victim to weakness and we can fall down over and over again. Is that what defines us? I choose to believe it isn’t. I choose to believe it how we rise up from the ashes, heal from the scars and self-care that becomes our calling card.

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My dear friend, Ariel JOY Fixler, asked me to write about how to not self-blame and play the victim card while grappling with a chronic illness. I am honored she asked me to write for the site. I could have gone down the torrid path of victim blaming.  Ariel and I both have chronic illnesses that limit our life span and quality of life. We both have been through life events, treatments medically, physically and emotionally that are almost too hard to verbally describe. We have been taken advantage of, abandoned, let down and our patience was tried over and over again.  We have had our identities stolen, hearts stomped on and been abandoned. The blame buck stops there. Why? There is a difference in our coping, you won’t see either of us play the victim card. We don’t want the “Awws” “OMG” and “You poor thing” effect. We don’t want to be pitied. We don’t want to be singled out. We don’t want to feel alienated. We don’t blurt out “WHY ME”. We also don’t want to be put in the different category box. That doesn’t mean we don’t bleed red and feel darkness instead of light some days. It also doesn’t mean we don’t hurt and we don’t feel real pain. We just know drawing attention to our condition, how our lives turned out is not an effective way of coping.

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We know that using social tools to advocate for ourselves is one thing (whether it be publishing or advocating for our chronic illnesses in the support group community). We know that using the same social tools to complain and draw pity to our conditions isn’t helping anyone. It actually is quite alienating and groan worthy.

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My Background:

I was diagnosed with Cystic Fibrosis before I was even born. The woman who gave birth to me and her boyfriend had genetic testing done in utero. I had the genetic or gene mutation (CFTR). Now you may be wondering why I used the description “the people who gave birth to me”. I am not stoic or super liberal with my parental terminology. The reason? Soon after the doctors found the gene mutation my birth parents decided to give me up for adoption. They had not financially or emotionally planned for a child who would require such extensive medical care. A child who would be in and out of the hospital. A child who would have trouble breathing most of her life and have a chronic illness with no cure on the horizon. I have never met my birth parents or looked for them. I don’t have a desire to conduct any research. I have been own my own most of my life and neither my illness or family has defined me.

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Now you are probably thinking who want a child with such difficulties? Or who would abandon their child because of these limitations? Who had the means to take on such charity case? Well you are right I was a tough sell.  I wasn’t the first pick, second or third pick of the adoption litter. I remained in foster care for years. I was a minority with a chronic illness and mounting hospital bills. I eventually aged out of the system and ended up in a group home. The foster homes were sterile, had no sense of family and made me tough. They were not a place to make friends. My foster family resented all the nights we spent in the ER because my lungs were filled with fluid. Even though they had the monetary funds allotted for all these visits from the state. The visits to the hospital were never out-of-pocket and I was insured through state funded programs. Despite all of this my foster family and the other children still resented me. They always claimed I was doing all of this for attention, pity and to get out of my chores.

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I was bullied for being a book-worm. My group home and foster home was in the South Central area of California. My fellow foster kids were in gangs, missed curfew and were in and out juvenile detention centers. They became products of the system and they made their victim blaming loud and clear in juvenile court.  I stayed in foster care and group homes until I finished high school. Which is a lot longer than most “kids”. Most children and teens were experiencing the milestones (birthdays, holidays, prom and graduation). That was not part of childhood. I was insulated and shy. I didn’t make a lot of friends at my school because I was in and out of the hospital so often. I also had to transfer schools every time I got moved to a new group home and foster home (because I aged out of the system).  There were no summer camps, no trips to the mall, no high school parties, no social experiences that define your upbringing. 

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There was no television growing up in most of my foster and group homes. I went to the city library and spent hours reading. I also spent a lot of time on internet reading and researching. I watched film and television in the library for hours just to feel a sense of normalcy. I got a job at Ralph’s Supermarket after school so I could purchase a computer for college. I would also use the money to escape. I would spend time alone at the movies losing myself in the stories of others.  I buried myself in school work. I wanted to beat the system. I didn’t want to victim blame my choices in life. I didn’t want to be a screw up basically.

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I graduated from high school with a scholarship and got a scholarship to Rice University in Houston, Texas. I tried to have a normal college experience. It was difficult because I spent a lot of time in the hospital and hooked up to an oxygen tank. So it was hard to blend in on a small campus with oxygen tubing and a tank. There was one thing I did discover in college that changed me. I discovered a love for film and television. I immersed myself in the medium. I also knew I probably could never work on a film set. Who would want to pay my insurance fees for employability? What a headache! Who would want to be liable for a combustible oxygen tank girl? I sound like a film pitch and not a dependable employee. Thankfully I discovered all the Medical Employability Advocacy Groups.

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I decided to interview for different internships.  I made a connection with Matthew McConaughey’s film and production company. I was so surprised I got hired to work for his production company and charitable foundation J.K Livin.  That is where I met Ariel Joy Fixler. We had a great time on the film set of Failure to Launch. I found such caring souls and great cooking tips from Kathy Bates. Ariel sat with me in the hospital late at night when she didn’t have to at all.  We had just met and she was my guardian angel. I never had a friend who was white. I thought there had to be a catch. I had to be fitting a quota somehow for this chick. She wasn’t even sick then. There was not motive. She just didn’t want me to be alone. Her family was impacted by chronic illness (her father, her 3 grandparents, her aunt and the list went on for her). It was if she had the genetic mutation for chronic caregiving. Though I have to say she was pretty middle class. She went to private high schools and public colleges. She once told me she didn’t really have Black people friends her until college and her internship. I said she never saw “one”. She said no she saw them she just didn’t know any personally.  I still laugh about that comment. Ariel joked that it was like the movie, the Sixth Sense. She said, “I see Black People”. In the tone of “I see dead people”.  She felt she had a pretty sheltered experience growing up. Her hometown was very white and Jewish. She told me her high school years were the same mix. She wasn’t proud of her exposure to diversity but she honestly admitted it.

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Ariel never babied me or made me feel like I was a victim either. She told me her late grandfather Bernie, spent most of his later life on and off on an oxygen tank. Ariel said he was her favorite person in the world. She told me that is where she got spunk and spirit from. His voice was a commanding presence despite his illness. She saw his fighter attitude and that he never played the pity card or victim blame game. Ariel also said if she ever faced adversity that is how she planned to fight it. She wanted to fight like a champ. Ariel said her grandfather was a former Navy man and smoker and had Emphysema.  She said despite his problem breathing he had such a positive attitude. He never let her be lazy. When she stayed over he used to say ” Up and atom hit the decks” to start her day. He had the Navy worker mentality. She would always remember that attitude, that voice, especially when she was having moments of pity and self-loathing.

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Ariel and I went our separate ways. She pursued her career in film marketing and distribution in New York City. I stayed close to my southern roots. I still remained employed in the entertainment industry. To be honest it was hard for me to hold a consistent job. I was driven and determined and educated beyond my wildest expectations. I just had days where I needed my oxygen tank and was confined to my bed and hospital room. I couldn’t actively travel so I wanted to stay in the South but be somewhere that had an emerging entertainment hub. I moved from Austin to Atlanta and worked for True Entertainment (which produces a lot of franchises like the Real Housewives). I also worked for Mara Brock Akil (Girlfriends and Being Mary Jane). I also worked for Tyler Perry’s production company. I want to be around a growing community of Black entertainment and Atlanta was the epicenter. That is not to say I was out of the woods concerning my health. I struggled deeply and it sidelined me quite often. I was secure knowing Emory University was one of the top hospitals in the country. Did I wish I was traveling the world like my other friends in the industry? YES!  I was just happy I finally had friends. I had friends that felt like family. They didn’t pity me either. I had a voice even when I couldn’t breathe.

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I always kept in touch with Ariel. We emailed all the time and were always on Blackberry Messenger (RIP). I knew about her diagnosis a few years ago. I also knew she was going to turn her diagnosis and prognosis into something for the greater good. I got that gut feeling when she told me she was seeking out alternative health methods of healing. I was pretty surprised but also elated after poo-pooing alternative health for so long. She described the approaches as nonsense. That all changed pretty quickly and I was glad. After she came back from Martha’s Vineyard Holistic Critical Care retreat 2 years ago she changed. I could hear it, see it and feel it.  My friend had a new calling. She had pep in her step and spirit, one I hadn’t seen in a while. She wanted to combine her new knowledge of healing through nutrition, alternative health and the entertainment industry. Before I could say “Go for it” she started her company, Fixed Naturally. She was marketing and promoting alternative health companies nationwide. She was cooking all the time and contacting holistic and natural food chefs to work with them. She wanted to learn and couldn’t stop discovering. I have always been a huge advocate of alternative health and plant-based diets. She used to lovingly mock me for my approach. Now my friend was a stern advocate. I was so happy for her.

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As soon as her business picked up she became sick again. It was so unfair. This wasn’t like the first time. Ariel was completely sidelined and crippled by her illness. She couldn’t move, had trouble breathing and couldn’t be active in her business. She was truly devastated because her new business was booming. She had this huge Rolodex of people who wanted to use her services. Ariel didn’t have the ability to do anything with it. So I asked her if she wanted me to take over her business. She was concerned how I would be able to do this as I was on and off of an Oxygen tank. I also was freelancing for different Atlanta production companies. I told her my roommate was a holistic chef. I also informed her that with my business acumen both of us could help her out. More importantly we wanted to help her build and re-build.

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So we took over her business quite quickly.  It was hard for her to not be in control of her body. My friend was losing a grip on her business as well. We assured her it would all be ok. Well it wasn’t A-OK.  We hired an intern who almost took down our business. To put it frankly this intern was a massive catfish. She had access to all our contacts and was sending emails to people within our address book for fake casting calls, fake networking opportunities, catering gigs you name it. She was impersonating celebrities, studio execs and faking email addresses you name it. She even hacked our professional email addresses and then would delete correspondence so we wouldn’t see what she was doing. She did the same thing by hacking our website, having the site send out spam and posting false job bulletins. She just wanted to meet and correspond with people in power or celebrities so badly this is the tactic she took. It was really sad. This went out for longer than we would like to admit. We were all so busy delegating tasks we didn’t catch wind of it until we got emails and calls from our clients and friends. We got this intern through all the right methods. We went through the intern program at a local and public NYC college. Within 6 months she nearly took down the business. It was a mess and we still have no idea how far-reaching it even went. We thought it was settled. We had to explain it to our clients, to the people within our address book and we had to sift through so many catfish emails.

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The worst part was we hadn’t even made the official announcement of the transition of power. We hadn’t told everyone yet that Ariel was no longer the face and head of her company. She had just transferred the power over and she was in and out of the ICU in NY and Philly hospitals. She was getting all these emails and calls about the incident and was shocked and horrified. Between the two of us, we had spent the last ten years, forging special and important relationships within the industry. We were so careful regarding privacy and non disclosure agreements. We had both signed so many NDA’s and privacy contracts within our time in the industry. In the time frame of 5-6 months it all came crashing down. We had to take the intern to court, inform the school, our clients and change the every password under the sun. It was a mess!  I felt totally responsible and guilty.  I felt worse Ariel decided to take full responsibility for when contacting clients and friends. I could have blamed being distracted by my hospitalizations and my full-time job in production in Atlanta. The fact I didn’t check the intern we hired and trusted the school’s referral program. The fact that I outsourced help and wasn’t at the center of control.

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This could have defined our relationship and defined us as friends. Imagine being so ill and you can barely communicate and your message box is filled to the brim with confused clients, friends and contacts.  Relationships broken, trust broken and morale waning.  You had spent your whole life protecting the privacy of your friends in the industry and it all vanished in an instant. The case was settled and the whole experience made our company change our focus. We started working with non profits and charitable organizations that our entertainment industry contacts spearheaded. We catered the events, helped promote the events and it was a huge success. We even got one our healthy food client on Shark Tank. It was a way of turning such a negative experience into a positive. Six months ago I sold the company to Wilson West in Northern California. It is a company based in charitable event marketing and planning. We both knew we could have just given up and thrown a pity party.

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We could have blamed our chronic illnesses and thrown our hands up in failure. We could have mourned the bridges we burned and the time lost. We could have also played the blame game and our relationship could have completely soured. None of that ever happened. The experience made us stronger, it made us wiser and it made us grow. You won’t see me using my disease to throw any pity parties. It gives me a voice, it gives me a chance to learn more about the human ability to cope, advocate, learn and build my own community. I have been on my own for most of my life. I don’t have a husband. I don’t have a biological family. I don’t have any children and I am infertile because of my Cystic Fibrosis. My friend circle is very small. I need people who accept my limitations.  I have massive trust issues. I had to build my life from scratch. I had to create a community, choose my friends wisely and choose who I trust just as wisely.

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Have I been burned? Yes Ma’am!  My life had been filled with desertion and pain. I could have played that card like an ace in my back pocket. I could blamed being bullied and mocked as a child, teen and adult. I get stared at when I have my oxygen tank all the time.  I could have used it as an excuse for everything. I decided to take a different path and different life approach. My illness gave me a voice. I may not be a writer like my dear friend. I may not have created one hell of resource foundation either. I did find my voice through illness. I know how to self advocate for myself when I am hospitalized. I know how to talk to people within the illness community and in my support groups. I want them to know they are not alone.

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I built my life as it were a habitat for humanity house (one wood panel at a time). I manifested what I thought I deserved. There were times I wanted to give up. I knew my ability to sniff people out in BS department might make me cynical.  I knew how to soak in moments of clarity, absorb material and to believe all of this would serve a higher purpose.

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I had faith in Jesus Christ but more importantly I had faith in myself. My illness is something that is mine and mine alone.  I control how it impacts me. My illness has made me stronger. I am not a victim of circumstance.

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I speak to people now within the CF support community at Emory Hospital monthly. I wear multiple hats within the entertainment community. I am still freelancing in production. I now work as an assistant director and I got to direct a pilot for BET.  Are there days where I can’t breathe? Yes Ma’am. However my motivation to prove the universe wrong, to prove my biological parents expectations wrong is my prime motivation.

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I am not someone to be discarded. I am not a product of the foster care system and group home mentality. I am not a hood rat because I was raised in South Central despite the media stereotypes. My skin color does not and will never define me. My lungs may be filled with fluid but somehow I am not drowning. I rise above the murky waters. I am determined to live a life where my challenges do not define me. My self-worth is not determined by hospital visits and oxygen tanks. My medical bills have become managed care.

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You will never see me on social media posting statuses about my health limitations. There is no woe is me moments that need to be spotlighted. You also will not see me in the humble brag mentality talking about the celebrity clientele in my life. Patience is being a patient advocate. That station, that role, that hat is my virtue of choice. I speak up for knowing my rights as patient not a victim.

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All the challenges I have faced, health failing, business failing it could have defined me. It could have ruined me and broke me. Half the people in my position could have chosen to check out completely. The suicide rate for Cystic Fibrosis patients is extremely high.  I choose to check in, be present and be aware. I choose to read and continually educate myself. I choose to rally not whine. You choose how you cope. You choose who you let in. These are cognitive choices!  You select who you surround yourself with and who you make your family and friends.

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Once you learn to take accountability and no longer shift blame you WIN and WIN BIG.  Don’t play into being a victim, it’s the easy way out and a cop-out. You will see your self-worth in your determination. You will see how strong you are in your actions. We can all complain all the time. Complaining is a disturbing noise that drowns out the positivity. Use your voice, use your diagnosis to make you stronger not weaker.

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The Answers To The Tough Questions

By | Effects of Treatment on Patients, Friendly Advice, Help Communicating, Support and Healing Tactics | 2 Comments

By: Ariel Fixler

When your life is hurled upside down with a diagnosis there are a wave of emotions one goes through. What are the right actions, reactions and answers to the questions that keep you up at night?

I tried to answer the most pressing questions that patients and caregivers had asked me recently.

1. The Question (s):

Is it ok not to respond to people and go MIA in order to cope?

Is it rude?

Does it alienate people?

Is it silly to assume they will be around when you are ready to talk?

Will I lose my support system?

Or does it send a message without any words at all?

The Answer:

It is ok to rationalize your reticence. Silence may just be your golden ticket. It may be your personal coping mechanism to avoid outside stressors or opinions in order to achieve inner peace. Sometimes the most cognizant and peaceful moments are the ones where we block out the world, words and social noise around us. The most tender and life affirming moments can be when we sit quietly and reflect.

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You may not want to put the burden of your pain onto others (therefore transferring the emotional vulnerability and hurt onto them). People want to pacify you with positivity and optimism. They want to fill you with hope that may not be realistic. It’s a natural way to cope, but it is also firmly rooted in denial. Your vision of your fate and prognosis may not compare to their active hopes or fears. They may be afraid that verbalizing said fears is giving up and letting you down. They want to be your supporters and rally you into remission. They want to be there when you cross the Cancer finish line. They want to normalize your illness with harmless and mild coping terms. They want to be strong and encourage you to be just as tough. Phrases like “you are a fighter” are often used to motivate and encourage you. They want to motivate you to heal. It’s a way of coping and normalizing a difficult situation. Sometimes those positive mantras come out rather pushy, when you just want to exist and just “be”.

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You want to learn the process of accepting your prognosis and let your reality sink in. You want people to be realistic and accepting of your diagnosis. If you feel they can’t it’s ok to crawl into quiet mode. If they just don’t seem to get it. You don’t need to appease or please anyone. You are the leader of your own emotions which can direct your own reactions and actions.

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Conversely, they may not know want to say at all which leaves you feeling more alone than when you started. When I was in the most pain, confusion and stages of anger I was silent. I did not want to visualize or normalize my experience to help people around me understand and cope. I did not want to fit my assessment of my pain into a condensed message. I did not want to simplify my feelings, my pain, my pressure to bounce back and my hurt. I wanted to keep my thoughts to myself. I didn’t want to place the burden of my pain onto others. I was afraid of alienating them. It didn’t feel authentic to conduct myself in normal banter when I wanted to soak in what was really going on. I couldn’t get a read on my body and I couldn’t respond in a conducive manner. I didn’t want to be aggressive. I wanted to protect others from what I was going through. Sure people ask how you are doing, but can you really respond honestly? Are they creating a safe place for you to respond openly? It’s hard to be blunt, I felt so isolated because I thought only I could understand my pain. Transference of pain and emotion is real and isn’t fair to anyone. So if silence suits you most there is nothing to be ashamed of. You do not have to justify it and pray you don’t alienate your support circle.

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Sometimes being alone with your thoughts is the best way to cope and compartmentalize. Maybe you can binge watch a series and use that as your escape or personal activity.  If people really want to be there for you, they won’t be erratic, make your silence about them and try bait you into responding when you don’t want to. True friends give you the space you need to heal and heal properly. You shouldn’t have to verbalize why you don’t want to be vocal and responsive. True support is found in people who accept your mode of acceptance of your illness and want to be there for you even if you do not want to talk. They can JUST BE and EXIST WITH YOU. Only the selfish make it about them and need validation of your friendship by getting you to respond to them.

2. The Question:
Do I need to forgive people I feel have wronged me and not properly supported me?

The Answer:
No. But I highly recommend forging on with forgiveness.

What do I mean? No one HAS TO FORGIVE ANYONE. However it is so much easier when you release the burden that is the anger beast. Forgoing forgiveness happens all the time, but most times it leads to regret, a sinking feeling that may not be rectified in time. The more time you let go by, the harder it is to incite a forgiving conversation. It doesn’t mean you are weak. It means you want to forgive and move on. It doesn’t make you a pushover. It actually pushes you to be brave. Forgiveness shows maturity and enlightenment. Everyone wants a do over, a restart, reboot and refresh. Not everyone gets that rare chance. So be the person who takes a different path, who opens their mind and their heart.

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Be the person who isn’t so blinded by the past and blinded by anger. Be someone who isn’t so closed off. Don’t be so closed off and internally combustable that you cannot hear or see anything else (except your own assumptions and declarations). Forgiveness is what you seek and it is what seeks you. It can be the companion piece of the puzzle and “peace” you never knew you needed. You have so much more to contend with and to be angry at, but it doesn’t have to be directed at others or even yourself. You can be tolerant and stand tall. You can help people in denial and make your new reality a place of acceptance and forgiveness.

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I want to take this time to apologize to everyone reading this. If you were ever at the cross hairs of my anger, my bitterness about my prognosis and isolation you deserve an apology. I never sought out to be THAT PERSON. I never wanted to be the woman all consumed and having a pity party for one. I hated being unresponsive to truly supportive outreach. I didn’t know how to answer a simple question of how I was feeling and worse if I did it was filled with resentment and anger. My former goal in life was to connect people and bring them together. My anger consumed me. I thought I deserved more from life. Hell I thought I just deserved A LIFE. It was one thing when my disease overtook my body. However, when it started to mess with my spirit, my brain, my personality, my humor and how I cope and react, I knew I could never come back from all of this. I couldn’t mask my pain anymore. My pain was tangible and palpable. I may never get the chance to make amends with everyone I wanted to, but that doesn’t mean I didn’t have the drive to make peace. I am basically mourning myself and my former life.

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Please know I am more than my words, bigger than my actions and kinder than my candor and outbursts. I wanted to be loved, feel comforted and not isolate people through my words and actions. It’s hard for me to initiate a dialogue when I want to be silent and reclusive. I have so many email drafts in my inbox that I have for people, whether they know they deserved an apology from me or not. My basic conclusion was not to send them. Not because these people did not deserve them (because they did). It was really because they may have never known there was any conflict or discontentment in our relationship. It didn’t seem fair. It seemed to be another method of transference? Maybe it would heal me but it was also selfish. I had a conversation with my friend and sounding board, Matt Goldman, about it at length. We had an AHA moment concluding that making people aware of a conflict and then initiating a peace treaty might not be fair.

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3. The Question:

Do I explain or correct people’s assumptions and generalizations?

The Answer: YES.

If someone can’t handle being corrected and enlightened they may not be the best support system for you. I remember someone once asking me why I feared scan appointments? They don’t hurt you? It’s just a machine! Well that is not entirely true.

Scans (Pet Scans, MRIs, CT Scans with or without contrast, even an ultrasound) are machines equipped to measure illness. How do they measure illness? The machine highlights it through extensive magnified imaging. Every scan can show if your disease has spread, what body part is failing you and can determine your fate and life-span.

The machines are also scary. They are confined spaces that are loud. The machines leave you feeling powerless until you get your results a week later. Even those in remission are subjected to it. The whole imaging process can bring you back to your illness past, fears and insecurities. It can destroy the inner peace you had created while healing. It can bring back feelings and fears you thought you let go of. You have to prepare yourself for the worst. You have to equip yourself with the coping skills you thought you no longer needed.

What’s not to fear? If you already feeling like a ticking time bomb ready to implode, the scans are your starter match to get the fire burning rather quickly. So yes scans do not physically “hurt you” but their outcome can be more painful than any surgery or procedure. Scan results may be followed with a series of appointments, painful and invasive biopsies and headaches to further determine your fate and utter existence. Did I mention you have to wait up to a week for these daunting results? Yea…..

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4. The Questions:

Should you figure out what your legacy will be?

Or what you want to impart onto others?

Or is that for the self-righteous and for those who want attention?

The Answer:

YES, YES and YES. Definitely make your legacy clear even if you want to currently cope in silence.

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As Plato said so eloquently, “necessity is the mother of invention”. You may see there is a need for something that does not currently exist. You may be more aware of this while coping and managing your illness and health care.

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You may feel like you are living in oblivion and hiding behind your disease. That may not be how you want to remembered. You may want to learn from that and impart wisdom. YOU ARE NOT REQUIRED TO INSPIRE!

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I thought I originally wanted to create a scholarship fund for those patients who want to express themselves and self-publish. By investigating this idea fully, I found out there are scholarship funds and resources that existed. It was not until much later on I realized there needed to be an all in one resource foundation. It needed to be free with no expectation of donations as well. A source that can support the ill, their caregivers and their support system. To figure what to say and how to say it without offense or defense mentalities. To learn more about the internal thoughts, external actions and reflexes of those who are ill. As well as being a place and forum for advice and resources I wish I had. It was a way to heal and heal others in the same fallow swoop. I realized nothing like this existed. You had to do so many separate google searches to find what you needed. You needed to dig hard and source far and wide for it within a search engine. Most people who are immersed in their illness battle, do not have the time, energy or resources to do all of that “searching”.

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So why not make it simple, make it expressive and make it useful. Additionally, make it something I can be proud of when I was consumed with so much anger and pain. I didn’t want all of that external and internal pain to be part of my legacy. I turned my hurt into a cause to help others. The foundation can support others and in turn support you by providing an outlet to identify with and express yourself.

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So my point here is determine what helped you during your illness:

What was lacking?
What was needed?
What was your best distraction or source of enlightenment and support?

When you decide what that is, vocalize it to someone who can help you carry out your legacy. Clarify your intent, message and execution. Make your mission and words clear, so your legacy will represent all the facets that describe you, but don’t define you.

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5. The Question:

Is letting go a sign of weakness?

The Answer:

NO it is a sign of courage, acceptance and utter bravery.

There may come a time you do not want to fight anymore. Most people who hold onto life, while they are in pain are not holding on for themselves. You are not living a life worth living, yet you also fear letting go, letting people down and death itself. What’s scarier continuing on with your life being sick? OR sticking it out but resenting doing that? Or letting go and letting yourself free and maybe really finally living in the process?

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So who are they holding on for?

Are you holding on for your support systems in order not to disappoint them?
Is that fair or just placing your doubts and guilt onto them?

No matter what your age, everyone wants to be a crusader of courage and make others proud to know them. They want to set an example that will make people proud to know them. They want to be thoughtful, enlightened and reflective. They hold onto hope (not only for themselves) but for others as well. Many think fighting or pushing through the pain will make them a hero, a fighter, even when that is never want they desired to be. They don’t want to be a leader. They do not want to be in denial, their point of illumination comes by informing others they no longer what to live a life that is pure pain. They don’t want to live a life looking in from the outside. Vocalizing your emotions and fears does not make you weak, it breeds bravery and clarifies so much.

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Author of “The Fault in Our Stars” John Green, once said that funerals are really for the living not the dying. There could not be a truer statement. Think about it funerals are a way to provide comfort, to revere and celebrate one’s life and battles. They are a way to mourn and share stories of the people they love. Even if you think you know how you want to be remembered, it is up to the people you love to interpret your last wishes in the way they see most fitting. They will be the ones who provide the most effective insight into your wishes and this ultimately provides a lasting comfort.

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You should know part of letting go of your pain, your life, your fight, means finally losing your grip on the control button. You know what? THAT IS OK. You have to have faith the people you love will mourn you in the way that best suits them and the community you have been a part of and created. You have to hope you won’t be a topic to be mourned and thought of for a fleeting moment, day or week after your passing (like a trending topic).

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Relinquish your control and set yourself free. Facebook now allows you to designate someone who can be in charge of your social presence after your passing. Think about that new designation, in a way social media is helping you start the process of letting go and at the same time creating your future footprint even after you pass.

https://www.everplans.com/articles/facebook-legacy-contact-the-social-media-giant-acknowledges-death-more-realistically 

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Hushing The Hypercritical

By | Effects of Treatment on Patients, Friendly Advice, Help Communicating, Support and Healing Tactics | No Comments
By: Ariel Fixler

The dictionary defines hypercritical as:

hy·per·crit·i·cal
ˌhīpərˈkridək(ə)l/
adjective
excessively and unreasonably critical, especially of small faults.
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I had an acute awareness regarding our widespread societal hypercritical tendencies. We are so quick to judge. Everything and everyone is pre-judged and post-judged. What do I mean by that statement? We are rooting for people to fail and kick them while they are down. It is as if we seek pleasure in it. We are always looking for ulterior motives and less than altruistic intentions. The people who are the most insecure are those who are quick to spread malicious gossip as if it was gospel. They feed off of the negative and their passion for attention overtakes them. They need the most attention and ego assuaging as well. They make their opinions vocal and their intent irreverent. They think, post, spread without consequence and more simply without truly thinking it through.
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No matter what your standing is in life, you are being judged and feeling the wrath of being stared down rather brutally. We all have our snarky comments on standby ready to shoot, aim and fire. There are grandiose statements made all around us. We make blanketed statements and assessments. We tend to so broadly generalize. We tend to block out what is unique, true and rational. We mock those with differing drives and opinions. We critique everything and everyone. I have been both victim and a contributor and to be frank both positions are filled with hypocrisy and layered with the ludicrous. Thinking about being in both shoes is heavy and makes sick to my stomach.
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We judge people by their talent, abilities and words. But can we do any better than them? Who are we to judge in any judicious and fair manner? We compare ourselves to others and see how we measure up. We size up everyone in every gender and station in life. We question why people deserve attention when we deserve said attention. No one is safe, not even the sick and defenseless.
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I know the word bully is now a trendy word or a cause to take up, but what happens when it is no longer a cause? What happens when it becomes a case for caring and compassion? Bullying is more than a trend it is a reality. Bullying and taunting can be both conversely mindful and manic.
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We rush to judgement. We prejudicially proclaim our personal judgements, declarations and opinions (most times before we have all the hard facts). So many people judge from afar, without any personal or tangible proof. Words get passed down and passed onward in a cycle of hurt. We should be without sitting with it and thinking it through before judging hastily. Unless you witness something or someone with your very own eyes, we have no right to silently or vocally judge. We have no right to sit behind a screen judging and being negative.  Those kind of actions are the breeding ground for intolerance and ignorance. They are the reason people close themselves off, isolate in depression and in extreme cases self-harm. They are the reason people are not vocal about what afflicts them and overtakes them. They are afraid of the ignorance and judgement.
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Who gave you the courtroom gavel to slam people with? We all are in self-protection mode. We often are rash with our emotions and take action without fully thinking it through. We are ready to reply and retort without letting it marinate and sitting with it in silence. We try to hurt someone else before they can be hurt us. We are always in self-protection mode to protect ourselves from what is true and tangible.We put up a wall in order not to let people in and also to not be let down.
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If we really took the time to be rational with our emotions, actions and thoughts we probably wouldn’t conduct ourselves in the same manner. Also half of the rational, irrational actions and emotions are hitting the wrong target. You make them represent your hurt, fear and sadness from the past and bring them to the surface. Are you really going after them for current actions and assumptions? Or are you attacking them for what they represent to you in the past, present and future? That is why the phrase “jump to conclusions” exists. You are figuratively leaping and clinging onto something that may be false and a lie. When people say “sleep on it”, it isn’t a put off not to rationalize or console you. It is hitting the restart and refresh button so you can still live in the now….. but later on. When we don’t restart and think it over we are a machine that is in shut down mode, not letting anything or anyone in. We are running on fumes and burning out our rational side. We won’t let any other opinions or knowledge in. We become close minded and closed off. We assure ourselves to “go with our gut” and act in the now instead of leaving it or living in “the later”.
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The recipients become a bystander of their own life narrative. It’s like watching a sporting match from the sidelines. You can’t do anything but watch in silence. You are silenced by the sullying. Whether you are healthy, sick or just living your life at an even keel, you can easily become a victim.
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You have two choices when you are the victim of an emotional and verbal attack:
1. Spew the same hatred, judgments and hurt to the messenger or creator of such critical content. You may be creating a sick cycle of pot shots.
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2. Stay silent, stay sane, be brave and do not stoop to the same desperate and attention seeking levels as the attacker. Listen muting yourself is never easy and is certainly not the passive way out. It is the mature way to invite positivity in. Silence is golden and creates the light in your life that has been penetrated by the darkness of words and actions. Is it really that painful to wait and see rather to act fast and possibly irrationally? Remember writing is therapy, but you don’t always have to press the send key. You can draft away the darkness, find a better outlet for your pain (and gut responses) than going on the same attack.
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No one wins in the war of words it creates the waning of your wisdom. It needs to stop and it needs to stop right now. Saying that it is all in good fun and not mean-spirited is far from the truth. You know what is even worse? Hearing the second-hand account of such mean-spirited banter and accusations. It takes balls to pass judgement, make accusations and point the finger at people. You know what takes bigger balls? Saying it to the persons face. You are chicken shitting your way out of the hole you are digging, by telling someone else and playing a broken game of telephone. By the time the message reaches you it is muffled and vitriol. When the words finally reach the listening ears of the target it hits with a resounding thud. That is not to say the person who finally tells you the storied tale isn’t brave, honest and helpful. It means it just takes more courage to not hide behind your words, actions and a screen. Often times the person who relays the message, bad news and gossip becomes the target of your reaction (which is usually anger and shock). That is not even close to fair to anyone.
Think about all the people you critique online (especially public figures).
Would you ever say those things to their face if you met them?
Could you do their job?
Have their talent?
Wear their fashion?
Live their life any better?
Probably not right?
How would you cope or react?
So why would you do that with people from “normal” walks of life?
Who gave you that role?
Who gave you that power?
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No one is a justified recipient of your barks and barbs. Put forward your passion, responses, opinions and turn them into compassion, understanding, forgiveness and love. Take the time to figure out the why instead of focusing on the who, what and when. Who knows you may be put in the position where you need that same support in your life. You truly never know, karma isn’t a bitch as the saying goes. Karma is kinetic energy and a force that catapults a conversation of candor (if utilized in the right way). It is something that can be created and harnessed as a tool not a weapon.
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One of my biggest regrets and truly stomach turning moments in my life was being too judgemental of others, knocking people down and building them up in one fallow swoop. I could be passive, aggressive and passive aggressive. I understood the effect, more than I would like to admit (because I have also been on the receiving end of it).
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Here is an example, one of my breaking points is when my friend Barrie told me something so horrible after a lunch with an old childhood friend over the holidays in 2014. Saying something so out of line and realizing this person is a newly minted physician. My dear friend Barrie, who has been nothing but supportive and loving to me for the last 10 years and throughout my childhood, felt just as ugly reciting it to me.. It was a turning point for both of us, since this same person also had harsh words for our most innocuous friend Amy. Crap-talking her was like shit talking Mother Theresa, you just don’t do it. Since I was the person who constantly let this person back into my life (after she always went MIA). I accepted every excuse, I even defended her to others and actively set myself up for disappointment. So I take partial blame for allowing in the toxicity.
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The person who had such harsh critique and assumptions, is a doctor who treats people on a regular basis. So being ugly with her words and actions this is their bedside manner? Now to give you perspective this is person is someone who would always pass judgement from afar and was bullied when she was younger. So she took out of a lot of aggression on others. We often tried to justify and dignify her actions and love for one upping everyone and general lack of sportsmanship. Even my friend Barrie was the target of her anger and hostile jabs (up until only recently) when she tried to wipe the slate clean.  This person was someone who gets pleasure in the pain of others, especially those she felt had wronged her. For all of her life she hated the classmates who left her out or any childish nonsense on that spectrum of “emo” emotional vulnerability scale. She had left this school years ago as a pre-teen, yet was all full of teen angst and palpable aggression in her 30s. As teens and adults, we always made excuses for her attitude, rash and cruel behavior and her ability to judge others at the drop of a hat. Our parents (even when we were teenagers) never quite understood her proclivity for “mean” and calculated cruelty.
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You know it’s never a good sign when your parents tell you your friend is not a good influence on you and not someone they like to have over or be around. Her mother was hard to be around which we were told made her a product of that cruelty? I don’t know if I buy that but that, but it is what our parents told us as kids to rationalize their behavior. My friends in my community I grew up in were always wary of her gossipy tendencies at our community and temple gatherings. They were right to lead with such a moral and protective compass.  She was quick to judge everyone in her path, the same went for the friends of hers I was friendly with. They reached out when they needed something, a set up, contacts, gossip, help with a gig or social favors. They were all hyper competitive with one another it seemed like a weird dynamic. They cast judgements on everyone and had opinions that were none to kind about any person who they deemed a threat. I tried to take what I heard with a grain of salt knowing who said it.  I also didn’t want iodine poisoning with all that salty intake (if you catch my not so ironic drift). We relayed everything to my mom and friends from home and they were taken aback, but ironically, no one was really that surprised words so hateful and pointed came out of her mouth. So what does that say in the end?
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A completely different scenario was a fellow scribe who had the balls to make me their anger target, but the cowardness not to confront me. As opposed to being mature and to talk it out, they used social media to make veiled barbs and jabs. You know the kind where it is vague enough not to know who the person was referencing, but clear enough to understand the message behind it. Where people comment “Are you ok”?  They post vague quotes, famous quotes and statuses to garner attention and have people question what’s going in their life. They just want people to confirm their need to bring everything to the surface in the vaguest of manners.  The people who air their hurt and grievances in an attention catching manner. The same way others air kindness, positivity, gratitude and love in an inviting way. It turns the attention tables to create a victim scenario when they are anything but the victim. They may not even remember the true definition of that word since they interpreted so many times in their own favor. The way people use the word “literally”nowadays as opposed to the word “figuratively”. They bitch about the mundane in life in a “why me” type whiney voice. Their quotes and statuses are also soaked in vagueness. They were hiding behind their words and their built-in interpretation of veracity and nobility.
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The sick respect honesty more than any thing, veracity and candor over vagueness. Someone who is realistic of our condition and does not walk on eggshells around us. Someone who isn’t hiding behind vague words and vents in a private manner. Someone is open and is there to listen and not judge. Someone who isn’t in denial and emotionally detached from our reality. If you are angry please tell us, we certainly will tell you. Rather recently I found out through a second-hand telling and recounting of a muffled story something someone had said about me. It was a past barb and commentary that was brought to the surface in the present. By the time the broken game of telephone reached by rotary ears I couldn’t believe what I was hearing. It’s like every person who passed along the message added content to make it a better story. It reminded me of when people edit scripts and the initial content gets so edited in a round of edits that are passed around in the writer’s room, you forgot the original content and focus. How did a sci fi script morph into a romantic comedy?
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So no one is immune to the wrath of being judged, you can be sick and weak and your body riddled with disease and people will still pick on you. One of my closest friends, Kerry McQuade, has half of her stomach removed. She is weak, her bones protrude and she struggles daily. She writes about her illness and what she has to go through to function. It’s a super intense and monitored regimen. But people still feel the need to mock her weight, throw eating disorder accusations her way and create stories about her. She writes about it candidly in her pieces of me blog http://piecesofme.co/. She has to vocally justify her appearance as if she is on trial for her health and well-being. However people still feel the need to bully her! Eat a burger they say. She can’t, can you just leave her ALONE. It breaks my heart. The worst things I have heard about the ill, including myself is we want attention and we want pity. Really? Everyone would trade anything for just a glimpse of your normalcy. We are not seeking attention, we just don’t always have positive things to say when you ask us the daunting question of how we are feeling. We could lie to normalize the banter, but if we don’t and are open with others we want sympathy and attention? Check yourself before you wreck yourself people.
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I singled out these most recent scenarios because they are freshest in my mind. I could make a comprehensive list of terrible judgements passed upon me and people I know who are ill. Even worse, I kept silent because I didn’t want to go off on them and have someone take my words and forward or screen shot them as if it was a funny game of pain. But this is neither the place for that, nor do I want to give those people any more time or attention than they were already seeking. I chose to rise to the occasion of the rational not the rigid. People who think they are so smart and discerning are the least self-aware, self-sufficient and least confident. They are also the most insecure. Their words do not express boldness and candor, contrary to popular belief.  I also don’t like getting involved in shifting blame or switching up the victim card (making them the newly victimized). The blame game is just that, it is an endless game of cat and mouse. Trust me the only outcome is getting trapped by baiting one another into getting trapped by words and actions and ending up confined and imprisoned in a mouse trap.
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Ask yourself before you pose these judgemental questions with the preface OMG…..
Did you hear?
Did you see?
Instead of asking those questions ask WHY DO YOU CARE?
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No one is immune from being a victim. Judgement and being vocal about it in whatever forum, is just a new form of modern-day bullying. We all do a tit for tat, but who really stacks up on top? The answer is NO ONE. It takes a lot of energy and nastiness to fight back, so many do not. Did I go after people who had gone after me most recently and in the past? NO. The old me would have and would have been cunning and played into kicking them down a peg. Everything piles on, until you are fully submerged in the sullying of your name and reputation. I see and hear it every day.
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The simple question of “what do you think” turns into a chance to create a shame cycle and a spiraling that is out of control. Sometimes I wish I had been more vocal and stood up for myself, for every comment or discernment I heard. I thought about it, asked my friends and medical team and fellow CancerCare support group members. I truly wrestled with it and instead I used my Gmail inbox to write personal notes and use it as an outlet to express the injustice. I never sent them, but just writing the words helped me and was an outlet for my thoughts. Responding was giving in. Retorting rapidly was playing a game that no matter what the outcome was a lose/lose situation right? It was giving credence to those who displayed intolerance and hatred.
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All I can do now is tell people for every assumption, accusation and discrimination you exert it takes up energy, valuable energy, good energy that is being eaten up by hatred and discerning capability for cowardness. The smack talking you are doing, makes you no better than a schoolyard bully who makes school a daily struggle and battlefield. Wouldn’t it to be better to be inviting with your words as opposed to being alienating and antagonistic? Ever heard of the phrase killing them with kindness? That is not just a blanket statement or a fun play in grammatical alliteration. It speaks volumes. Why? People commit suicide, hurt themselves, hurt others and feel immeasurable pain just from words alone. No one is paying you to get up on your soapbox and preach, so stop doing it for free, it’s not benefitting anyone.
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For every person you take down with your words and assumptions, think about what you would do if those insults were hurled your way. REALLY THINK. Our skin is only as thick as our skulls, with one tap, one hit, one thud the protective shell and coating is gone. We feel exposed, stripped away, great pain and lose our intellect in the process. Don’t peel away our layers like an onion and make us cry. Be thoughtful, be mindful and protect our hard shells with the delicacy of a treasured pet turtle.
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You have the ability to be brave, be the BETTER PERSON, be honest, be caring and harness all the jealousy and that bitterness toward a greater good. You can help others, you can shield others from the pain, you can be their rock and redeem yourself. You want to play victim online so people can as if you are ok? You can do better, you can use your social outlets to bring people together, not to alienate others. There is a way out. I wish I would have done a better job and been a better person all around and throughout my life. I wish I wasn’t just insightful and mindful when I was felt so raw, vulnerable and reflective. Kindness shouldn’t be seasonal outerwear. Being aware of your actions, your words and intentions incites positive declarations which will bring comfort to those you didn’t even know they needed it.
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So take the time in your day to think before you speak. Before you post a snarky status or social commentary that is biting and nasty. Think is it really needed? Does it make me feel good to be this critical? What am I making up for by posting this? Take that extra time to really think it through before you blast someone on an email or mass text riddled with snark. Incite a campaign for kindness, use your words to motivate and connect people (not to single them out). You can easily act in accordance of kindness and forgiveness. No one deserves the snark and snide remarks. Enjoy the people and pleasures in life, before composing, sending out or posting less than poignant prose.
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Any time you are thinking about venturing into mean girl territory or bully tactics visit Lauren Paul’s Kind Campaign instead:
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about

The Therapeutic Effect Of Writing

By | Effects of Treatment on Patients, Friendly Advice, Help Communicating, Support and Healing Tactics | 2 Comments

By: Ariel Fixler

This is dedicated to my fellow fierce scribes who told me to keep writing on a daily basis.

Do you have some inner thoughts that you need to let out? Try writing and documenting your journey in the less than idyllic land of the ill. Your words, thoughts and prose does not have to be a public display for the masses.

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(My journal given to me by my dear friend and artist, Andrea Alessi)

Your writing can be an internal memo to yourself. It can be a daily reminder of the craziness and how strong you truly are. Writing can be as private and public as you want it to be. It can shine let on your silence. It can shine light on your soul. It can ignite a spark inside of you that was once deemed unlit.

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For me writing was my main forum of therapy. I embarked on mainstream therapy as well as support groups, alternative and traditional medicine. Writing was my main alternative and effective approach. It sometimes made me rise above my anger and pain. It sometimes documented my pain. I wrote purely and candidly about my struggle. I had two forms of my written journey

THE PRIVATE SIDE:

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My email draft box and my notes on napkins. I have so many emails in my Gmail draft box that were my therapy. Whenever I had a moment when I was struggling against my disease, my support system, my doctors and nurses I would write them notes that I would never send. No recipient in the addressee line. Just plain venting and honesty. I have over 300 emails I never sent. It may sound silly to everyone but have you ever fired off an email you regretted? An email filled with anger and words you wish you could take back? We all do. Well drafting an email, putting your emotions into words can help soften the blow of your anger. It is not a cure-all by any means, but it is a strident step and effective outlet. I always have advised my friends, fellow patients to try this methodology before going down the route of firing off their emotions in a missive. That irrational email (which you may think is totally rational) may miss the mark and alienate others. So much can be misinterpreted online and in an email. There is no tonality in an email and if there is, it can be largely vague and unclear at times. When I didn’t have breathing problems I even used a microphone app to record my thoughts to hear my own tone and amplified voice.

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My other private methodology was “notes on napkins”. Transcribing my thoughts during my odd “awake” hours and when I couldn’t speak when I was on a ventilator. I let the vent doing my venting and it was thought-provoking. Here is an example of reflections on my condition during that time.

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THE PUBLIC SIDE:

I had my blogs, my articles and this foundation. It was a way for me to free flow ideas and let others know about what the process of illness was truly like. It was a look inside of my overflowing brain, a peek into my heart, my soul, my emotions, my vulnerability and my life. Disease can mute your voice and make you self isolate and hate the world. You can be weighed down by anger and jealousy that is too heavy to carry on your own shrugged shoulders. Writing can give you a voice and give you some form of your life back. It is a way to open up and allow your support system to see how you are handling the effects of treatment physically and emotionally. So they in turn can emotionally prepare. Through your words they can be an effective support in whatever manner you allow them to be let in. You may think well I am not a writer that is for the more verbose and creative type. Well give it a try before you assume. I didn’t start writing until much later in life. I am so glad I did. It strengthened by mind when my body was weakened and riddled with the effects of treatments. I even reconnected with my AP high school English teacher (Mrs. Freeman). She was moved by my writing and encouraged me to no end. She mused and moved me. To make her proud and inspired was one of my greatest joys as a scribe. I cannot tell you the value of her praise and feedback.

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So if you are struggling to handle your diagnosis, disease and treatments think about putting the pen to paper or key stroking your creativity and journey. Writing will always be there for you. The page can remain blank when your mind is blank and grappling for the right words. It doesn’t have to be consistent. You can return to writing and pick up like no time has passed. It is that kind of friendship.

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You have so much inside of you that may need a public forum or private ventilation. You may want to start a writing group (you can make it private amongst your support group, password protected and only open to fellow diagnosed peers and illness partners). Some of my fiercest illness warriors did just that. They had private blogs and sites where I could read their writing and help support their journey in a privatized manner. It made me feel connected to them especially when they wanted to disconnect.  Writing for me gave me peace of mind and equally allowed people to see a piece of my life.

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Without writing I think I would have been lost, but instead I was found.

My Cancer blog:
http://lilfixversuscancer.blogspot.com/
An Archive of my published work:
http://fixednaturally.com/ariel-fixlers-work/
A connected writing platform and community:
http://www.caringbridge.org/
My dear chronic illness warrior Kerry who took a public and private approach to her writing:
http://piecesofme.co/
Robin Runs in the face of Diabetes:
http://www.healthline.com/diabetesmine/running-and-diabetes#2
http://www.huffingtonpost.com/scott-benner/the-marathon-runner-who-j_b_6456334.html
The Gurfein Scholarship Fund for Writing (turn your pain into a powerful journey):
http://www.gurfeinmerinefoundation.org/
The HBO Writing Fellowship:
https://www.withoutabox.com/03film/03t_fin/03t_fin_fest_01over.php?festival_id=13830

Irrational And Rational Anger Demons

By | Effects of Treatment on Patients, Friendly Advice, Help Communicating | 2 Comments

By: Ariel Fixler

One of the chronic and terminal illness side effects not talked about at length or openly is ANGER. It comes in waves and sometimes the waves come crashing down. They drown the people around them. They make a mess of things. They cause people to quickly clear out and escape as if a storm had just hit and will take a long time to recover from. You almost need a relief fund for the anger storm.

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For me personally, I was surprised how my illness OVERPOWERED ME. I was hoping I would be one of those warriors where my illness was constantly EMPOWERING ME.  I wanted everyone to think OMG she is like so BRAVE. I thought I would be angry and feel isolated and sidelined, but knowing me these feelings would be my private internal battle. It would never overtake me. I am not that kind of person. I never wanted to be a product of my disease. Anger took over my body, mind and spirit in a way where I didn’t recognize my actions and words. It made be the bitter person I never ever wanted to be. I didn’t want to be mad at people who did not deserve it.

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It made me unmanageable, it made my disease unmanageable, it made feel trapped and disillusioned. It made me a curmudgeon but not the light-hearted Larry David type.

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My anger would never spill out onto anyone else and make a mess of things. It would make me pick irrational fights. It made me lash out at those I feel weren’t there for me in the way I felt I needed (or was deserving of). My anger touched everyone around me. Those friends and family who were trying so hard to be there for me, but were also making mistakes. Those who tried to treat me normally and act like I wasn’t ill to normalize me and not make me weep openly.

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It was as if nothing anyone could do would shield them from my active anger wrath.  It was a tornado that catapulted and destroyed everyone in my path.

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I was surprised at how vocal I was about my disdain. Whether I confronted people, picked fights or used my writing to display my dismay and anger. Were my actions always right? Were they always fair? Probably NOT. I felt paralyzed by it all. If you know me well, you know I am a pretty jovial, non-confrontational and enthusiastic person. I loved bringing people together, being there for others and letting my inner and outer light shine through.  I sound like a Hallmark card GAG…..sorry. The point is illness changed me. Cancer stripped me of the sunshine and the “light that shined inside of me”. It stripped me of the positivity I held so dear. My jaundice and liver failure made me surly and cruel. Every side effect and challenge I faced made more immobile and started to strip me of the “Fixler” I once remembered. Not only did I not physically recognize myself in the mirror, I didn’t recognize the verbose and cunning word play I engaged in. It was like my own real life version of the movie “Memento”.

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Who was this monster? I didn’t recognize my appearance in the mirror or the personality that went with it. This wasn’t the usual Fixler joke style of alliteration and quick-witted banter. Wit used to be passed back and forth like a comedy torch that shined bright and regal. This anger was irrational and pointed.

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In my eyes, it was rational because no one knew my pain, fear, isolation, terror and sadness. I was jealous of everyone living their normal lives. I thought I had the right as Cancer patient to be this way. I assumed whoever stayed around to support me and was still fighting the good fight with me could take my bouts with anger. They were the winners in the game of Cancer”Survivor” Anger Edition. CBS never would want to buy the rights to my show though trust me. It was a test of sorts of who could handle me at both my worst and my best. Those people who were ready to stick around and stick up for me during the rational and irrational times. They were the last people standing. They were the tried and true support system.

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One of my biggest regrets is how I “went at and after” people when I was grappling with my illness. I was charged up and fueled up with anger in my tank. It was unfair to put my grand expectations and hopes of how I thought I should be supported and loved. It was unfair to prejudge how often I should be communicated with, reached out to and loved. I felt the way of controlling that aspect and was to put up a wall before I could be hurt further by people’s intended and accidental actions.

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I spent half of my life overcoming that good old mean girl mentality. Trying to be so far from removed from the competitive young woman who was obsessed with popularity, good looks, fancy clothes, accessories and leading the way (in a not so dignified manner). I never wanted to be that person again. EVER. I saw people I knew still traumatized and caring about high school and college politics (trying to associate with people they deemed cool) and it made me so sad. Even when I worked in the film industry it was just grown up ass-kissing and a massive popularity contest. They were still trying to overcome high school traumas, rejection and the past. I knew none of that mattered anymore. To me the word “popular” lost its meaning once I got older. For others popularity just took a different form.

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The people who visited, supported and even those I was friendly with before my illness were from all walks of social life. Some were well liked, leaders of the class, others were more reticent but also brilliant and kind. I was mad at myself for not getting to really know them earlier in life. However I was so grateful we were brought together at this stage. Even if it was in the face of illness. I can’t look back in anger (yes I am quoting Oasis). I am a child of the melancholy 90’s after all. I am so glad I got to know such good people I never got to know beforehand and have such a diverse and extending support group.

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In the beginning when I was diagnosed I had my original Fixler shiny personality to fight through. Even though I was sitting on the sidelines and missing out on life and adventures. I still chatted like nothing was wrong and was muting the pain with humor. As time went on that became harder and harder to do. I was more impacted by it. I was more angry with those I felt hurt me, forgot about me and were too self involved to see a pained individual in front of them.

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I was mad they couldn’t see I needed a shoulder to cry on and not a person to casually shoot the usual shit with. I missed my life. I used to travel around the world for work to film festivals and film sets.  I tasted the best food and embraced the most amazing people. I hadn’t even been to a movie theatre or restaurant in years. I forgot what normalcy was when others around me were taking it for granted.

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My anger was protruding and I hated that I couldn’t control it. It was lock stock and two smoking barrels and ready to fire. My words were hurtful I admit it. My aim sometimes was not at the right person. It was usually the easiest target or the closest one emotionally or in physical proximity.

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Disease changes you and if you don’t address how it changes your personality, you are doing yourself a disservice. You are also firmly placed in denial by not having a self-actualization about it. It makes you so bitter and jealous. It makes your moments of sadness more heightened. You realize sometimes you are emotionally unstable and don’t even remember the words coming out of your mouth. You become manic, feel crazy or even become a manic depressive.

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Again I was a mean girl, just in a different form. When did this happen? How did I get here? I wasn’t even paying attention to it or listening to the words coming out of my mouth anymore. The notion I ran so far away from was now my current reality. This time I really didn’t know how to control the anger and mean spirit. I could blame the drugs, the pain, the hurt, the anger, the solitude or too much time alone with my thoughts and failing body. I could say everything and every person was failing me. Was that true or fair? It wasn’t true at all. People wanted to help and be there, but I was so fragile, angry and they were so lost and didn’t know to help. Do they not address the elephant in the room or directly address it? Should they chat and joke like everything is normal? Should they engage in conversations about our friends and pop culture and just BE? Or conversely, should they try to delve in deeper to help me and really sit with me and listen? Are they ready to open Pandora’s Box? Can they be helpful? Will they make it worse? Is that a role they understand and are ready to actively take on? So instead most times confusion overtakes people and silence ensues.

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So if you are dealing with someone who is suffering from a disease and are sad they have morphed into a shell of person they used to be (not just physically but emotionally) there is a root cause. That same cause HAS NOTHING TO DO WITH YOU. They are lost, they don’t remember their former life. They are filled with envy and saddled with isolation and solitude. The best thing you can do is be there for them. Don’t make them feel bad for being mad. They will apologize in their own way and in their own time.  Maybe they are apologizing with this post as we speak. Ahem…….. Cough, Cough, Wink, Wink…..

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Even if they don’t articulate their sorrow and apology amongst their anger and hostility you have to know THEY ARE BETTER THAN THE ANGER THEY ARE DISPLAYING. They do not want to be this or act like an asshole. No one wants to be feared. People naturally want to be loved. They no longer have control and be the perfectionists of their own life and narrator of their own stories. They need help and guidance. So they hope they can pass the torch onto someone else who can do that for them. When it is not executed how they imagined they show their anger. Reality check everyone, their anger is really sadness masked in anger’s clothes. They are jealous, they can’t take accountability for their actions. They also can no longer execute their best laid plans. They cannot control their dark and angry thoughts. They are not used to all of this permeating their mind. They make their own mistakes and they are constantly picking on and nit-picking others.

Is it mature? NO.

Is it rational? NO.

Is it happening all around us in illness communities around the world? YOU BET YOUR ASS IT IS.

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So if you feel the anger monster associated with illness coming to get you or attack you, try to take it with a grain of salt. That person, that monster, that shadow of their former self does not want to hurt you or be mean to you. They just want their life back and have enough trouble fighting their inner demons. They are tired of beating themselves up and kicking their own ass so they change their aim at the closest target. No matter how much they love that target. Even if that target is the closest person they have in their life. Try to not take it as a personal affront or assault on you, your actions and your character. I know it’s hard and easier said than done, but it will benefit you so greatly in the long run. It will make you bullet proof vest yourself and make you teflon tough. How you handle the patient in your life will make you stronger in other aspects of your life. I am not advocating any sort of abuse. Just let the sick person in your life go on these massive rants and attacks. They need to let it all out.

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Lastly, I don’t want you to hold out for the apology you may never get or be waiting for. That is advice for both the patient and their support system (wherever their anger may lie and be directed towards).  So to make it easier for you there are actions you can undertake. You can learn more about where this anger is coming from. You can question and tune into why the patient feels this specific anger. In addition why the patient feels this rage is rational (while everyone else sees it as irrational). Be the person who delves deeper, who questions the patient, engages in THE WHY and THE HOW behind the targeted rage. Raise your expectation of your own limitations, you can be the support system who doesn’t get scolded by the anger heat. You can be the GO TO support system (which is rare, treasured and admired).

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Walking away from anger heat will make you miss the warmth involved in the support you may miss all together. If you can’t be there for the tough times it will ultimately put you in hot water and fill you up with clouding guilt. The patient may also feel used and not want to let you in on the more positive moment that include healing, remission, celebration and well…. LIFE.

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I’m Sorry You Expect So Much From Me

By | Friendly Advice, Help Communicating, Support and Healing Tactics | 2 Comments

By: Ariel Fixler

The day I heard the phrase “Well I am sorry you expect so much from me ” I knew I had to turn this negative response into a positive. This was a response from someone when I confronted them about not being really for me, being missing in action and aloof when it came to listening to any issue I brought to their attention. They kept telling me they wanted to be a better support for me, but when confronted about less than consistent and supportive past actions (to make for a better present and future) that was there response.

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If a patient confronts you about being “MIA” (missing in action) or unable to really delve deeper or listen, PLEASE don’t ever say that phrase in response. I am sorry you expect so much, too much, that much from me. Either way if you say something like that it is a massive and painful slap in the face. It negates all the good will exchanges in the past. It makes the patient feel so small and needy to even have to ask you to be there for them. Which seems like a normal human function and emotional capability. It is painstaking to ask you to come visit and come through. To respond in that manner is insensitive, cruel, thoughtless and self-involved. Yup I said it. Am I wrong?

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It’s actually an honor we think that much of you that we would come to you to vent. We have a trusted bond, strong enough to withstand telling you how we really feel and calling you out on BS. It shows we value your opinion and are free with our emotions around you. It shows we value your presence in our support system. It shows we can come to you and maybe only you, when we usually want to seep into depression and isolate. It is an honor we tell you we need you, YES YOU, to be there for us because you get us and support us. Do you know how hard it is for us to admit we need someone to listen? It is so hard for us to be vulnerable and even worse to call you out on vanishing from our support system. We don’t want to be a support system hall monitor barking “HEY YOU, YES YOU, WHAT THE FUCK”…..

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I remember this instance like it was yesterday crying in my hospital bed to this friend after they uttered the words “I am sorry you expect so much from me”.  It made me feel that I needed to feel lucky they showed up at all.  I put my heart and emotions on my sleeve. In one quick and rather thoughtless retort, my emotional sweater had been cut and stripped down to a sweater vest, devoid of warmth and utility. It was like someone punched me in the gut and worse I was crying, truly sobbing in an ugly cry type way. I was so vulnerable, raw and hurt in front of their eyes. This person was older than me and should know better, but after a few more years than me on this planet they did not. They kept coming in and out of my support system like it was a revolving door. They apologized time and time again, but still their actions didn’t really change. Everyone has had that type of friendship. One you probably should have let go of long ago and neither of you are perfect in that friendship. You make plans you never plan to keep, hoping someone pulls the trigger to cancel. You follow up and check in because it seems obligatory and perfunctory. Neither of you want to be the one to cut the chord, so instead a cycle of curtailed communication and support ensues and you both become bitter the friendship is still going on.

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I wanted to be more open minded. I wanted to give their attempts to be there and be a real support the validity I thought they had deserved. Even if you have a dirt off your shoulder, free spirited, independent woman mentality, there is no reason to put distance between you and the dependent. That is not the moment to show your free spirit shine to prove you are tough, it’s a time to allow the vulnerability and support in. It is not a time make someone feel badly for expecting more, for loving more, for needing more and to hope for the fruition in the friendship.

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So if a patient, family member, friend, significant other or parent confronts you or reaches out to you soaked in emotional vulnerability, depression and desperation stop, look and LISTEN. Also look within yourself and take accountability, culpability and take it as a learning experience to be a better support system for that person. Damn, take it as a chance to better yourselves by being the hand-holder, the listener, the communicator and one who can be relied upon. It is an experience where you can grow as a human being when you thought you couldn’t grow and learn anymore. It can be a turning point for you and most people don’t get those moments so soak it in. I promise you it will make you grow as a person and BE SOMEONE YOU CAN BE PROUD OF. It is a chance to rise tall and proud. It is not an instance to riddle yourself and your loved ones with a litany of excuses.

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When that person said “I am sorry you expect so much from me” I shut down for a while. I questioned if I was annoying and needy. Then one day I woke up and screamed WHAT THE FUCK!

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I haven’t spoken much to this person since that thought-provoking and game changing incident. I knew I wouldn’t “get much” from them in response. I was in no mood to confront them again and be met with excuses. I think I was dealing with enough pain and bullshit don’t you?

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This person constantly blamed their hectic work schedule for being missing in action. I had a standing order every year on their birthday to send them a cookie cake and for the last 5 years it went on deaf ears. I only heard from them once to say simply, “thanks for the cookie”. All this time did they not realize it was a cookie cake?  Did they think the Keebler Elf factory exploded in a honey I shrunk the kids type manner? I planned their birthdays, set them up, nursed them through break ups, kept secrets, helped network and created fun reunions and really put myself out there for them (like I would do with any friend I cherished).

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All I got was a half ass attempt in return. Sometimes they didn’t show up at all for visits and would text or email last minute. Yup imagine that emotional gut-punch of waiting, wishing and hoping. They acknowledged these traits within themselves, calling out their own behavior as “flaky” “absent-minded” and irresponsible”. They knew how to do a drive by visit like a pro. Never checking in afterward and disappearing from supportive and communicative existence. Saying what’s your schedule and when can I see you again when they left, with no intention of coming by in the near future. They tried to visit last minute some times to fit me in. You know in between social and work events. However as you might surmise they canceled and rearranged the visit so many times I said forget it. It’s that person you always say you are going to get together with but you cancel and reschedule so many times it’s just a get together in name only and in vain. It’s as if to communicate see we tried to make a concerted effort.

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They even made a point of telling me how much they had to switch around their schedule and this may be the only time they could see me. I was made to feel so small and just something to check off their obligatory list. I felt awful because whenever I wanted to venture out socially during my illness (which I used to do) they would be more than game to go out. But when I needed one on one time, it was as if I was asking for too much. Worse I remember being left places, at hotels, clubs and bars and being left to my own accord, when they promised they would help me get me home safely. So I knew one day I would use it as a teaching tool. I wasn’t sure how or when but I knew the WHY.

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Food Noise

By | Effects of Treatment on Patients, Friendly Advice, Help Communicating, Support and Healing Tactics | 4 Comments

By: Ariel Fixler

Dedication #1: To my Foodies who take food combining to a whole new level. They see Food Noise as White Noise. You know who you are. Keep celebrating yourself and enjoy a pleasure that is not riddled with guilt and over-processing.

Dedication #2: To my friends and family still struggling to love the skin they are in and take pleasure in the little things in life. Letting the noise and control overtake them, but being self-aware enough to realize it. May you gain the strength to fight the demons. May you see joy in consumption and the miracle that is digestion.

You know what I miss the most some days? Food.

When you are chronically ill every single day you forget about food.  It becomes a task not a pleasure. Nutrition just becomes a “thing” to keep you going.  Food becomes a utility of sorts. Something you have to remember “to take”. We don’t get to see the beneficial pleasures of food. We are too obsessed about focusing on the hours we are awake. We are praying to be free of fevers, possessing the bodily function to swallow, aren’t vomiting and are able to move our muscles. Our mind is always strong, however our body is not working in correlation with our mind. We wish we had choices in life and one of those choices could be picking what goes into our bodies and seeking pleasure in it. TO POSSESS NOT TO OBSESS. 

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I specifically miss eating for pleasure. I remember a time when chewing was a natural and seamless occurrence (yes that is a pun on seamless.com). It didn’t take proactive thought, fear and hyper planning. Will I choke? Will the nutrition come up as slowly as it went down? Will I digest it? Will it go right through me? Will I have an adverse and allergic reaction? Food literally was the devil to me, the burned inside of me instead of digesting and creating motility. All my meals are in the fluid form. Shakes, juices, puree soups… the list goes on. I don’t have active taste buds and I derive no active pleasure in nutrition. It’s a forced function and mechanism.

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I was someone who found so much pleasure in food (mainly by being raised by my father who was an avid and social eater). A man who not once….. NOT EVER….. derided himself over food content, weight or calories. He did have high cholesterol but even when he was dealing with that health issue he was a pro. He was physically active and always proactive, until Parkinson’s and Dementia overtook him

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He did something I wish everyone could do. When he was hungry he ate and afterward he derived nothing but immense pleasure. My father has always been my biggest hero. If you haven’t gleaned that from the foundation site you may be missing something.  My dad’s food affairs made him even more lovable than I thought was possible. His father, Henry Fixler, was the exact same way as was my Uncle Gene (yes the same name our family never won points for originality). The Fixler men may have always noticed people with a little extra weight (because they are the men of “that generation”). My grandfather sold control top panty hose door to door for God’s sake. However, they themselves, never judged their overeager and expanding appetites for food and life.

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I haven’t had solid food in almost a year. It’s dangerous for me, especially since swallowing, digesting and processing is harder than anything else. I miss the smell of food, the look of food and especially the taste. I also miss how food is a social function and a conversational “piece” and “peace”.

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Food is something we take for granted, yet take so much pleasure and pain in the same fallow swoop. We have palpable and real food memories. Those are memories we associate with our food pleasures and experiences. These are memories that ignite our senses and provide tangible pleasure and satisfaction. Sometimes these food memories fill us with anger, guilt and regret.

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People grapple with the pain of how to monitor their portions and use food to control themselves and restrict themselves. On both ends of the spectrum food is still their main focus. It provides fuel, happiness, pleasure and is a socially unifying method. It can be a conservational piece with every bite. We complain about over-eating, the newest diet, elimination technique or cleanse, in a way to obsessively control ourselves and allow ourselves to be in control of something (when we are powerless against so much else in the world).

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So every time you obsess about treating yourself, indulging, or self-hate over having a few extra bites JUST LET IT GO. Every time you counteract the food demons by over-working out and being active (another activity I miss so deeply) think there is someone who wishes they were in your shoes. Someone who could gain the social and emotional pleasure of each bite and savor it the same way as we savor our health.

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As I have stated in a previous paragraph, food memories are real memories. They are so powerful and tangible. They go hand in hand with every memorable experience. They are the backdrop and link to our pleasure center. So don’t make food your personal prison.

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There is so much to take in the world of food, senses and sensibilities. There is a world full of smells, tastes and sights to be seen. The more we self-hate and judge ourselves we ultimately lose. The more we go on and on about over-eating and our regimens to burn off these pleasures we forget what is important. We forget to live in that moment. We are also so busy over thinking it and judging our intake that we forget the “treat” and “treaty” we could make with ourselves by giving into this pleasure.

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Food isn’t the enemy your mind is. You are fighting with your mind and body to judge and articulate how much you ate, indulged and over did it. There are many people out there that wish you could just live in the moment and enjoy every morsel for them without beating yourself up internally and online. The ability to allow yourself to just be and not pre plan how you can combat what you just did (an afterthought attack) is a choice. No one is harder on you than yourself. No one wants to hear people whine about dieting and self-hating.  They want to you to love yourselves which means loving what you ingest, digest and take in.

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As a child and as an adult I was surrounded by people who could not let go of their inner food demons. My food thoughts and noise quieted at a young age or at least were muted somewhat. My friend Robin and I had epic conversation about this top at length. When I was sick I would give anything to have a choice in my food habits and rituals. To not be connected to a feeding tube. I told her for my junior prom I forgot healthy weight loss techniques so I was on a candy corn diet. Since candy corn was fat free and if you ate too much of it you became nauseated. I lost 6lbs in a week. Yea… see food noise BAM…. I remember my friend Amy did something similar with Marshmallow Puffs and I thought she is older, wiser and in AP classes so it has to be smart right? OY to the Vey. Please do not take these stories as tips dear G-d! I know people I love older and younger are still struggling so gravely with eating disorders. Please don’t do what I did. Please do not see these as an example.

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Even my mom as long as I could remember gave into the diet trend. I mean she took 13-year-old me Weight Watchers when I was about 15-20lbs overweight in 7th grade. My closest friend in school was going through the same dietary trend. I want to say it was the parents of our generation, but I know the same food noise still exists today. We can blame society and marketing, but it does not seem to be going away.

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In my early years, Bar and Bat Mitzvah season meant I was dressing up and my body was growing fast.  I was “developing”. My mom wanted to stop my body from expanding and show me how to control it. I was way too young to learn what counting points was and restricting food rituals. I was too young to see the food neurosis I saw in Weight Watchers but I did.  So I took it to the extreme and endured an eating disorder for the next year until I got help. I thought those Weight Watcher people are nuts and “I got this”. Umm I didn’t “have this”. I didn’t want to go to those meetings and weigh ins and be on display. I wasn’t a show pony. So being well ME I took control (in the least effective manner I realize that trust me).  When I took it to the eating disorder extreme I was in TROUBLE. We even had a meeting in our grade about eating disorders with our guidance counselor. I was told if I didn’t gain weight I would really miss out on life and in turn have to take time out from life and school. Oddly, the fear of missing out (FOMO) even at a young age gave me the biggest kick in the ass to get better. I was 15 years old and 85lbs at the time. Later in life I was 29 years old and the same weight and would have given anything to not give into the side effects of treatment (aka a feeding tube). I would have given anything to take pleasure in the food I once personally chose to restrict (15 years earlier). That feeding tube I was threatened with (and put the fear of god in me) during my eating disorder days, was now my reality. I now had to have these tubes because my body could not process nutrition.

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I always felt so badly my mom was so critical on treating herself and enjoying food. She tended to beat herself up and over think every “food moment”. In the early 90’s she was on the fat-free food craze and any diet book Oprah Winfrey touted as food bait. I knew what the Atkin’s Diet and South Beach diet were before anyone else. I knew calorie count additions and subtraction better than any math problem I had to solve for homework.  Even when I was sick I would pay my mom or any of my friends compliments. Instead of taking in the compliment, they would point out the instances they overrate lately and pointing to their body flaws, pinching their fat and going into self critique mode.

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Most of the people I knew who drank to get drunk. In their humble opinion them booze was basically fat free. There were no controls or limits on. However when it came to food it was hard seeing such crazy eating disorders and restricting for people who were in their late 20s and 30s (both make and female). Some married and some people even had kids had boisterous food noise in their heads. It made me so sad.

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I remember when my mom stayed over to take care of me she brought rice cakes for snacking which I was shocked still existed. I surely had thought these throwback products went the way of Wasa crackers, the Step Workout, Snackwell and the Thighmaster into the 80’s and 90’s graveyard. My nurse the other night ate a bag of fat free Fig Newtons. The whole bag was a meal. I felt so sad watching it go down on both levels.  Food binges are heartbreaking to watch. You are constantly restarting and resetting your system. Her body was so confused.  I wish both women could set themselves free after 65 years on planet dealing with food judgement and criticism.

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I have memories in my early teen years where my dad and I used to sneak out of the house when we were younger. Even in my 20’s because there was no unhealthy food in the house. At one point our family were Vegetarians. Then we ate meat, then we didn’t it. Man it was so confusing for a young girl. My dad and I had our food traditions. It was our secret thing. When my grandpa lived with us I spent all my time with him watching television and having him make me a turkey sandwich with cole slaw and giving me mini milky ways for dessert. My grandpa had non kosher food downstairs IT WAS AMAZING. It was a brand new world and one my dad and I often escaped to in our own home. It gave my grandpa so much pleasure to watch me eat. He and I conversed and laughed over deli sandwiches and Dr. Brown sodas.

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My mom, my nurse and so many others by far were not the only ones crippled by food noise. Everyone does it. Everyone has it. Everybody is watching their food intake in some way. The wedding diets, the deep depression deluge, the break up blues, the post baby body, the cleanse after overeating, the holiday resolutions and the list goes on. The people who diet all the time yet will inhale anything at 3am after a night of hard-drinking. All their “food restrictions and intolerance” go out the window. Food becomes a character within itself. Food motivates them and becomes “their thing” they tell people about. Their talking point and guide.

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Everyone wants someone to quiet their food demons and tell them they are beautiful, perfect just the way they are and allow them the pleasure without the pain. I feel so so sad when I see it overtaking others at whatever age and stage of life. Seeing the power in being powerless, hoping they seek the courage to curtail the control. When I went to a holistic retreat during my illness, I started to see the value in food in a whole new way. I saw what it was like to eat for fuel and energy. My only battle with food in the recent years were my problems keeping it down during treatment and my illness. The word restricting was a word I expelled from my verbose library.

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So pick up the fork and put down the doubt and judgement. We are all our hardest critic and self-examiner. We have the physical flaw police on speed dial.  It’s almost a negotiated dance we all do, to go on a deep dive fishing mission for subtle compliments. We just want someone to tell us we are beautiful and to let go. Someone to tell us we are enough.

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Free yourself from the suffix FREE (gluten, soy, dairy, fat, sugar FREE). It’s time to be good to yourself and remember you have the ability to lift this burden and take part in loving yourself, loving food and most importantly loving your body. Someone you know is wishing their only burden was food noise and was wishing you the pleasure of lifting the pain.

http://www.foodnoise.org/#!about-me/c1j8w
http://hellogiggles.com/learned-start-loving-body

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