Patient Advocacy Versus Victimization

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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