World Sickle Cell Day: Feelings

Hertz Nazaire
Jun 20, 2019 · 6 min read

World Sickle Cell Day an Education and Awareness even that takes place on June 19th.

Yes, it is that time of year again. When the Sickle Cell Community comes together to fight hard to push through the noise of Social Media and try to get a message out about Sickle Cell Disease.

There is a deep sense of responsibility for all of those affected by Sickle Cell Disease in some way or another to do something. To Say Something. To be seen. To be heard.

Many of us post from hospital beds fighting this pain.

Others around the world post charts about our genotypes. So share the context of this better than others.

Knowing your status for Sickle Cell Disease is Sickle Cell 101

This is a very important part of Awareness and Education in our communities around the world. People make very tough choices because Sickle Cell is a very serious disease for a person to have.

Still one of the hardest things for me about this day are those who take the choices out of the parent or couples hand and post things in black and white.

How do you make a choice this hard so black and white?

I am going to be 46 in a few months. I never married. Not because I did not try but because my status with SS made it nearly impossible for me to hold on to a relationship. People don’t need much help to run from pain and difficulty.

My mother died when I was 14. After the funeral I never saw my Aunts and Uncles, they did not live that far away only the next state over but they just kept a distance and radio silence. In recent years some of my Aunts have tried to get in touch again. Finding stories about me online, and saying they still care. I really needed you to be there when I was 14 not at 45. It is kinda late to have my aunties now.

The pain of rejection because of a disease you had no choice or control over is really painful, that rejection is hard to forgive.

So I find this type of education and awareness hard to look at on this day.

What the hell are those Xs suppose to mean to me?

Are people even mindful of the fact that they just Xed me out because of something in my DNA? It is a very hard education to take in but facts are facts.

Your child is going to have a very difficult life with any of those Red X statuses.

There are so many hopeful posts and tweets on Twitter, Facebook, and Instagram using the hash tag #WorldSickleCellDay a lot of people fighting to get the awareness out about how painful and devasting this diease truly is.

DO YOU KNOW YOUR STATUS?

I don’t at all agree with the forced education out there. I don’t like the away the boil things down to the solution of exclusion. I does not feel good to be part of the rejected minority even when the intentions are noble.

How would you feel if this was not about AA and AS or SS but of White, Black, Jew, or Muslim? You can’t help where you are born or what you are born into you can avoid but so much of it.

Is this our best choice as a society? Hoping if everyone followed the checklist this Sickle Cell problem would just go away?

I posted some of my feelings about this chart on Instagram, feel free to react to those feelings.

I can’t help but wonder if we teaching people how to run away from responsibility? To all the mothers who knew their status and that of their partner and still made the choice to start a family, I feel you are truly brave. You have taken on a responsibility not many human beings can carry the responsibility for.

I am sad that this is the best we can do on Awareness Day. But today was still one of those good days where you did not feel so alone in this. So many people wearing RED, so many smiling faces. Many Sickle Cell Warriors still alive and triving to live their best lives. Brave Successful and Powerful Warriors. Living life with no regrets.

As I thank my mother for my Life, I wonder if she would have made a different choice under the pressure of those charts and red Xs. I make no judgement on those that made that choice I even had phone conversations with expecting moms about unborn children who’s existance weight on how honest I was in telling her about the challenges I have had living a life with Sickle Cell. I will never forget that someone might now exist today because I did not lie about how great Sickle Cell is to have. It is not a blessing or a great thing, I don’t live in denial. I don’t wish this pain on anyone. But I do wish we had better choices than red Xs.

I have suffered yes but I have also lived, smiled, danced, painted, loved, made love, and continue to FIGHT.

I can’t help but think about someone who has more talent and worth than I do. Someone great and of vast gifts Xed out from this world because his or her parents did not get a green check on a genetic chart.

This day should be about those we lost, those we love, and those we fight for.

I can only feel sadness thinking of those rejected, forgotten, walked away from. Those red Xs.

We can do better, we must do better, at the very least be mindful of how you make us feel for our SS, SC, AC, AS statuses.

I don’t blame my Aunts, Uncles, and Girlfriends for running away. I wish I could run from my own Sickle Cell sometimes. But I do not regret my life. I think about Suicide far more often that I wish to. Depression is part of those alone and rejected feelings.

The Quality of Life someone suffering with Sickle Cell is everything. Nothing makes me happier than seeing a mother fighting for her son. It reminds me that my mom did the right thing. There was never a guilt for her to carry, I hate those charts. Becaude I know they hurt her. She saw me hurt and it tore her apart to see it.

She gave me a great gift that only she could have given me. She gave me a chance at LIFE. What I do with it is up to me Sickle Cell be dammed. I fight because I can name someone who thought my LIFE Mattered. Red Xs may make me second guest that gift because just like Sickle Cell, when you suffer from pain long enough your mental health suffers and Depression is a serious a deadly disease as Sickle Cell. I have to keep my mind in check this is why I share my feelings when I feel hurt by what I see going on. Many well meaning people may not know they are hurting your self image at times. When you are fighting alone that self image is an important layer for survival. Be mindful of the warriors wearing red today and everyday.

Happy World Sickle Cell Day everyone.

We don’t always agree on how to do things, but every year this community gets stronger and someday they will take over social media with #WorldSickleCellDay trending. I am hopeful for less red Xs and much much more love and likes of Support for those wining this fight.

Hertz Nazaire

Hertz Nazaire

Written by

ハイチのスーパーフラット #KingsOfHaiti Artist PAINter #Haiti - Life is shorter than we can hope for... I wish to dedicate the days I have to inspiring compassion with Art

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