Get me in the ring, I want to fight.
The following an edited response to a request I got from the Nurse reviewing my eligibility to take part in a clinical trial that could cure my Sickle Cell Disease. She asked if I had any more Pain Crisis hopitalization dates within the past two years. I have been worried that there might be a practice were they only accept the sickiest patients to take such risks using new methods in gene editing.
So as an open letter to alll I have edited my feelings further here. I am sharing my plea as part of my journey, for the sake of raising awareness and to give voice to the many Sickle Cell Warriors who have been waiting all their lives for the chance to Knock Sickle Cell the F.O.
Hello,
I want to ask the question I should have asked day one.
Do you need more crisis dates because I need to be sicker to be eligible for this? That would be unconscionable to me.
IF this is the case please tell me, I would want to know these things for advocacy and awareness work and I would want to know where this kind of ethical thinking comes from and how do I best educate those who do not understand what suffering really is.
I do understand that governments/large organizations sometimes mean policies on paper, but policies do not always mean humane, compassionate, or considerate.
I would like to be considered eligible on my own merits as a human being who has already endured enough and has chosen to act in a way that provides a better situation to live the rest of his life.
I am not sicker because I chose not to be defeated, please don’t dismiss my will to fight. Suffering pain is hell.
I am not sicker because I did not enjoy the hell Sickle Cell was putting me through and was lucky enough to find people willing to help me fight smarter than I have been.
If there is a “Patient needs to be Sicker before we try risky Science Cure” policy in place to be eligible be honest with me and give me 3 months, in 3 months I promise you’ll have as many pain crisis dates on my medical record to justify my desire to take part in this trial. This does not sound very smart on my part or ethical in any medical policy that could keep me from a cure because I chose not to suffer needlessly. Please share with anyone that will listen, that this is the path I want for my life.
I do not see myself as healthy, I see myself as making a choice not to hurt or die hurting if I can help it.
To me Sickle Cell is in my DNA that should make me eligible, yes my history has been a long and painful one but that is not reflected in records. To know what pain I am enduring you would have to be inside my head right now to understand the anxiety and trauma I still carry with me hoping to keep the next crisis away.
To be honest with you, I have already gone through my hell years with Sickle Cell crisis pain.
I lost most of my vision in my right eye. I flatlined twice. I have been homeless 3 times.
I fight ongoing depression due to hating life with no way to plan around Sickle Cell Crises.
In 2008 while doing some advocacy work speaking in Hartford Connecticut in front of State Congressmen my current doctor came up to me with tears in her eyes because I was recounting my medical and life story of what I had been going through since then. She pleaded with me to come to UCONN, because I did not have to live like I was. I had long accepted living from crisis to crisis but she felt there was more that could be done if I gave her a chance to help me.
If you are going to review my eligibility based on the past 2 years I would say there is a high level of unfairness in that since I have already beaten the odds this disease has laid before me. Sickle Cell has taken from me family, children, a wife. All never happened because people feared to be part of my life.
I had a 3 year period when I was in the hospital more than I was at home I would spend nearly half of each month hospitalized.
At UCONN, I finally found a stable source of care providers, I have a good team around me and thanks to them I have had respite from pain crisis. Long enough to take on my mental health challenges.
I want to beat this. Not only for myself but for the mother who fought for me to be here instead of Haiti.
I want to beat this for the friends who have lost their battles to this disease at my age.
I have had all sorts of holy people pray over me for cures because they felt God is good and has morals and he would end my suffering if I felt I could not endure it. Well I felt that on day one, once was enough but I had many crisis, a lifetime worth.
What I want is a normal life or as normal as I can make it, not from prayer, not from a moral God, but from Science advancements.
I am of clear mind that this is what I want, and if this is how I die than I died FIGHTING. I do not want to die suffering like a beaten dog. This is the path I want for my life, to live as an artist, to travel the world, to share with others why Science education is needed in our communities just as much as our faith and traditions.
If my eligibility to take part in a Science based trial means I have to be doing very poorly or already at risk of death to be deemed okay to take part in a procedure that includes risks than take my mental health into account because I have long memories of pain and suffering. And right now all I want to do is fight so I never ever have to feel like that again.
Since 2008 have tried to keep all my appointments and catered my whole life around getting my monthly aphaeresis treatments to keep me well. I have been lucky, not everyone does as well on this treatment. But my mind and my heart wants more out of Life,
what I have right now is not the life I would want for myself. This treatment can only take me as far as the next time my port gets infected again. Right now I am strong enough to face this procedure, and to see it through all the phases to completion. I am the best candidate for something like this because I am mentally prepared for it. I have been preparing for this last battle all of my life don’t take that away from me because I chose to be a ‘good patient’ and kept my appointments.
We are all going to die someday, I want to choose LIFE without Sickle Cell Pain or the Fear that it is just around the corner waiting.
Many in our community fear medical trials because they do not understand or have any love for what is possible with Science. I have been curious about how things work since I was a child. This is a puzzle that needs to be solved. It can be fixed. I just want to fix it and move on with what little I have left of my life.
My medical records go a long way back if you would like me to find the rest of the hospitalization dates, I try to forget dates and days that I have been hospitalized. If only I could forget.
Get me in the ring, I want to fight.
Hertz Nazaire
