What Curing My Sickle Cell Disease Would Mean to Me
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Recently, I was asked to write an essay about what being cured of sickle cell would mean to me. I must say when I was first approached with this assignment my initial response was, “No.”
Not because I haven’t thought about it millions of times over the last 34 years. I would be lying if I said I hadn’t. Like most children who grow up “different” I have often fantasized about what it would mean to be “normal.” How great would it be to never have to go to a hospital let alone stay for days, weeks or even months on end? I would no longer have to deal with nurses and doctors with preconceived notions about what a sickle cell patient is: un-educated, lazy, ignorant drug seeker who isn’t in need of hospital care. Therefore, isn’t deserving of the best care their education and training can provide or that their facility can offer.
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It would not only mean living a life free of constant physical pain but emotional and psychological torment that comes with it. Freedom to cry or scream because that’s the act the pain calls for without the fear of being labeled out of control, violent or verbally abusive because you don’t fit another’s vision of pain. Or even worse, being labeled a typical sickle cell patient. It would mean finally being able to breathe without worrying if it’s being misread as something bad. No longer having to always be the perfect patient because someone has to set the example and show the masses that polite, kind, educated, calm, non-drug seeking sickle cell patients do exist.
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A cure would mean no longer feeling responsible for the psychological and emotional welfare of my loved ones. Hiding behind smiles and solvable “normal” problems or just hiding because there are no words to describe the pain and there’s no answer that can make it better. So, those options just seem easier… more humane even…
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It would mean having a parent who would only have to worry about the basic things that come along with raising a child like: making sure their child is a good, law-abiding, contributing member of society who will hopefully grow up, get married, have their own children and won’t repeat their parents’ mistakes. Hopefully…
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Most importantly, a cure would mean an end to the mutual guilt shared between a parent and child that comes with a genetically inherited disease. My mother could stop beating herself up for passing along a disease that causes her “first love” to be in constant pain. She could enjoy retirement and grow old gracefully without the constant fear that I won’t be able to care for myself once she’s gone. It means that I can finally stop feeling guilty because I’m her retirement fund, literally. For the last 36 years. She’s worked hard and campaigned endlessly to ensure I had and still have the best healthcare possible. Most people with her earning potential have millions in property and cash when they retire. However, a lifetime of private schools, medication, hospitalizations and doctors ensure that she’ll never really be able to retire. Because of me she’s been a consultant most of her professional life. Which means no company retirement plans, pensions or big payday investments. As the first born the duty of caring for our parents should fall on me. However, due to my health that’s about as plausible as Bernie Madoff’s clients getting their money back.
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Finally and most important of all, getting a cure for sickle cell would mean I would no longer have to live my life in short spurts. Starting a project or creating a business only to get derailed by hospital visits and doctor’s appointments. Not having to pick and choose what goals to attempt to accomplish based on the fact that I know my body could sabotage my plans at any moment and my mind won’t be able to take the disappointment and frustration that comes with each failed attempt. I live in a world where I not only have to plan for life’s usual drawbacks. I have to remember that what really matters is finishing what I set out to accomplish not how long it takes to do it.
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Unfortunately, the mind is stronger than the body. When you’re constantly taking two steps forward and five back because your body betrays you, it becomes very hard to gain and keep up momentum, drive and faith in not only finishing what’s been started but in oneself as well.
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Marissa Cors is a 5th generation Sickle Cell Disease patient. She is a patient advocate for her family’s non-profit Axis Advocacy for Sickle Cell Disease and its patient outreach program, The Sickle Cell Experience LIVE!. Which is a weekly podcast on Facebook, that's live on Wednesdays at 5pm, pt. As an author and an advocate, she hopes to increase awareness surrounding the mistreatment, neglect, discrimination and stigma which plagues adults with SCD once they "age out" of pediatric care. It is her lifelong goal to change the "Culture of Cruelty," that seems to drive the treatment adult Sickle Cell patients receive especially, male carriers. To a "Culture of Care", in which medical professionals are actually taught about this devastating, hereditary illness rather than, "warned" about it in med/nursing school. Unfortunately, they are miseducated and encouraged to issue care based upon, a Patient's Disease Profile instead, of their needs. There is nothing more devastating to ones soul than, learning that you cannot receive the life saving care you desperately need because, you don't fit another's vision of pain. More so, when you realize that the horrible treatment you are receiving is not only abnormal but, expected and encouraged by the staff as a whole, to remain the status quo. Patients with Sickle Cell seemingly don't have the same rights as other patients regardless, of their ailment. Marissa hopes to one day live in a world, where Sickle Cell is taken just as seriously, and treated with the same respect, understanding and empathy as Cancer. She lives, works and plays in the Greater Los Angeles area.
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