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?
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.
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”.
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.
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.
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?
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.
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.
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.
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.
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…..
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?
YES, YES and YES. Definitely make your legacy clear even if you want to currently cope in silence.
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.
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!
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”.
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.
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.
5. The Question:
Is letting go a sign of weakness?
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?
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.
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.
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).
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.