A Sickle Cell Child
by Hertz Nazaire
Just coming back from the 46th Annual National Convention for the Sickle Cell Disease Association of America, Inc. (SCDAA).
On Friday, October 12, from 1:30 pm – 3:00 pm for the Lonzie Lee Jones Patient Advocacy Symposium. We played an educational version of Hollywood Squares, everyone was having a good time happy, laughing, and smiling.
We all know how heavy the Sickle Cell topic can be for all of us touched by this pain.
A fellow Warrior in the audience stood up at the end and gave us all a shock to the system.
A reminder that this pain runs very deep and everyone is trying very hard to find a way to erase it from existence.
What she had to say comes from a line of talk, that we hear often. How to stop a child with Sickle Cell Disease from ever being born. Many people push hard for couples to get tested and knowing their status. But some people feel strongly that none of us who have the Sickle Trait or Disease should ever have sex and hells no on having a child.
So sitting there on stage with a group of successful adults and young people who have been standing against this pain all of their lives and still finding their gifts through hard effort. I felt drained.
I spoke out loud, not to reply to the beautiful young lady saying these things, but to myself.
I needed to remind myself, that no matter how depressed I get in this life, no matter the hardships I face, I still want to live. I still want to exist. I still have my art to create.
I am really tired of people thinking they have a right to erase my mother's choice. One of the very few things I know about my mother is the fact that she told me that my father wanted her to have an abortion when she got pregnant with me. My mother made a different choice. And I exist in this world because of that choice. A sperm cell is nothing without an egg, and an egg is nothing without that sperm cell but although it take the two. This is a choice that I feel only a woman can make because her body has to carry that life forward, while most men can simply walk away like my father did, like my step-father did.
I had a chance to be a father once. On September 11, 2001. I made love to my girlfriend and we had the chance to bring a life into this world. The thing is, I was not even thinking about her Sickle Cell Trait status. I never really had a chance to think about it, not in this world. Mental Health had more to do with why a choice was made and I never became a father.
I blame myself even now, that I was not strong enough to guide her through her sadness and tears about the pregnancy. I was still there with her although I wanted to run, I was at that Planned Parenthood office in that waiting room watching 12 year olds making the same choices adults should only make. I was 28 and I thought we could have made a different choice together.
I still feel that this was my greatest failure as a man, I wish I had more money, it is always about MONEY! I loved this girl but honestly in the end I see like most women who enter my life it was about the sex and how long my priapism fueled penis lasted.
I try to give myself some slack, because you have to understand being a male with Sickle Cell is HARD! You have to try so much harder to get a girl to notice you. We try HARD to please the women who enter our lives. I was always the sucker who wrote the love poetry, and got the roses delivered without the need for a holiday. I was a painter so most women I've been around long enough have a portrait I painted to show them they were on my mind.
When you live with Sickle Cell Pain and this pain only has one thing to show you about living in your body. It HURTS! It hurts badly! Then you discover sex and become driven to turn it into an art. I had a long distance girlfriend who called me "Voodoo Dick" she would drive the 5 hours it took to get into my bed when she had time off from work.
I was young and still pretty stupid and we would have these marathon sex sessions, and because of my Sickle Cell and Priapism, we once went at it for over 8 hours only stoping for short breaks of water.
Priapism is the worst kind of Sickle Pain a man can have, it takes everything from you mentally.
It crushes you and it can take away your ability to even feel like a man. Sometimes for me these erections came without the pain, I don't know why but I was always grateful because the pain was never a pleasure. At the time I was young and sex was just one of those challenges I had to work harder at than any other male.
Everything in my life takes a huge amount of effort, I have been in love many times. I have also been deeply alone for the past 12 years. Because I love women way too much but I can't be stupid about my efforts any longer. I am still a very sexual creature inside and any woman who enters my life would need to know that about me. Even at 45, my heart may not survive some of the things I did at 25 but I am very intense about all I do. My sexuality is still very intense and focused on art creation. Anything you can't put all your effort into is just not worth doing for me.
Women have told me in the past that I am too intense, intimidating, or feel they have to walk on egg shells around me. I take them at their word that I am that type of man. I don't enjoy stress, I have been hospitalized enough times over needless drama. Fighting for your life in an ICU just because someone does not understand that picking a fight just to stress you out is not a healthy way to show love.
I've been abused enough in my life, I don't want to be an abuser when all I want is someone to love and share my days with me. Not all my days will be pain free. Nothing in my life is painless, I am surrounded by eggshells so you'll need to learn how to walk on a minefield. I don't avoid something because it's hard. I want to use my energy and effort in the best and most efficient way possible.
We are all going to die someday none of us is immune from Death is is our fate. But we have to learn to respect that all lives should have that chance to exist and go through that process we call Life.
Having to hear that someone's purpose in life is to find the most efficient way to make sure others with my genetic make up no longer exists in this world is deeply hurtful to me. I understand the problem life with Sickle Cell is really hard, I know this, I'm living that life.
I just don't understand your rejection of the efforts it took for me to still be here standing in the same space and breathing the same air you breathe.
Spend all the effort you want on Sickle Cell Trait education to avoid more lives of hardship like mines. My personal feelings are your efforts are misguided. The answer is not how to wipe us out of existence so you can get rid of a pain disease that is hard for you to look at. A life is a life.
My life is providing this world with a challenge I understand that, but I have no choice but to live this life and fight for my own existence. I want to survive because my brain has the awareness that my life matters even when it is painful to live that life. It still matters that I am here. I understand I am not the best man or mate for anyone to fall in love with.
But instead of trying to get rid of people like me, should the effort not be on how to make my life better? How to end my painful moments, how to help me carry out my purpose?
If I was born brain-dead I would not want to be here, I would not even be aware that I wanted to live or even what the concept of life means. My brain is aware that I exist. Most of my body still functions well enough for a decent life. In fact I know I am having a far better life than most who never have to face the challenges of Sickle Cell Disease. Many are born into terrible conditions of existence surrounded by war, hatred, and deep poverty. A suffering that no human should go through. Yet no one is staying let's educate the world about stoping these people from being born into these conditions. No they recognize that the condition is the problem not the life living it. The condition should be the focus.
We are buying into an idea where we are saying these people should not have been born. I know some in this world think I should never have been born because I am Black. Simple as that! Now we are giving them the excuse of Sickle Cell Disease to wipe us out? Because Sickle Cell is Hard? Hard on who? On them?
Educate people to make their choices all you want. I have spoken to a few mothers who had to make that choice when they found out they were pregnant and found out both the man and woman have the sickle cell trait. They wanted to know about my life so far. I told them of all my hardships and challenges. And they made a choice based on my experience.
Yet my challenges, all came from the fact I only knew my mother for about 5 years of my life. She died when I was 13 and I did not start to live with her until I was about 8. Educate these people with compassion, do not teach them that there is only one acceptable choice or one moral choice based on your life experience. Not everyone is ready to be a parent, and not everyone should be a parent regardless if Sickle Cell plays a role in that choice.