iamsicklecell: story of rebellion or leadership???

iamsicklecell is the name I used when I created my social media account. The idea behind the name, and what I seem to struggle with within the Sickle Cell community, is all about my ability to not let words define me. I’ve heard people say you need to say “I have SCD” and stop using “iamsicklecell” because you are allowing the disease to leak further and further in your brain and it’s going to decide how your body functions. While I can appreciate and respect the opinions, my rebellious side won’t let me just accept that.

I have always been the person who creates my own lane, I don’t like to follow people (not that it’s a bad thing, because to be a good leader one must know how to follow), but because I’ve followed my brother for years, I am able to understand how to create my path, have others accept it (despite their feelings), and can even convince others to follow my lead/my way.

For me, using the name iamsicklecell means that I am this person, I have SCD, I was born that way, I am deciding how to navigate through the lasting impacts that SCD have left in my life; I am doing all of that with a smile on my face, therefore, I am Sickle Cell.

My journey has not been easy and it’s just starting. It hasn’t been all bad; I’m grateful for what I’ve been through and I draw my strength from it all. I’m now using that same strength to turn iamsicklecell into a great foundation primarily in Haiti (but hopefully worldwide) to not only spread awareness but also to reach new milestones within and for our Sickle Cell community, to make sure that young Warriors around the world don’t have to go through what I went through; and just thinking of this makes me smile…

Smile, it could be worse!!!

Another side of living with SCD in Haiti…

I’ve been back in Haiti for a while now, and I’m scheduled back in the states in a week’s time. Meanwhile, plenty has happened in Haiti, mainly politically; or is it politrickally? I’m making up words again…

In my spreading of awareness, I’ve mentioned that stress, not only a killer among”normal” people, causes real danger to those living with Sickle Cell Disease, to my fellow Warriors. I’ve shared a bit of a stressful situation I experienced while here, and thankfully that did not lead to a crisis.

November 18th is a national holiday in Haiti, it’s Battle of Vertières Day and it is an annual celebration which commemorates the victory of the battle in the Second War of Haitian Independence in 1803. Usually there’s a parade, but as of recently, the Haitian people has been protesting and demanding justice, launching an interesting movement (this post has to be done another day), but unfortunately the movement got infiltrated and politricks took over. Needless to say, Haiti is in a crisis.

The protests have begun since Sunday (November 18th, 2018), forcing people to stay home and be on a “forced leave”, or should I dare say “forced vacation”. At times some of them have been violent with burning tires and some shootings; a real political crisis.

In my little corner of the house, while I’m being forced to stay inside, I start stressing. It was normal to worry and I was able to accept staying home the following Monday, then Tuesday came and left. Wednesday also came and is leaving. I foresee Thursday and Friday going the exact same way as Monday and Tuesday. I’m still stressing; I start thinking about everything. God forbid this crisis (sickle cell crisis) starts and we’re still in the middle of this crisis (political crisis).

In my head I start seeing and feeling my initial fear. I always said that if I were to have a crisis while in Haïti, it’s going to be a real crisis. There’s a crisis in Haiti right now, and I’m stressing, causing me to possibly go into crisis, which will in turn create another crisis because of the crisis (political). While I love the play on words, I’m kinda screwed!!!

Living in Haiti is super challenging for everyone, add Sickle Cell to the equation and things get complicated. Should I stay? Should I leave? The fact remains that I have not seen the inside of a hospital in 3 months and that makes me real happy, but that little thing in the back of my head might be coming true sooner than I expected. What’s an island girl to do? Especially when she’s 98% happier and healthier in Haiti?

Smile, it could be worse!!!

Does time really heal all wounds?

We have all heard this sentence, in songs, in poems, from more experienced, and even from people who repeat stuff just to repeat them. But, does time really heal all wounds?

From regular interaction with others, I find that most people tend to avoid talking about their mental health. In my culture, or maybe in general, society makes it seem like having mental health issues, talking to a psychiatrist and/or a psychologist, is a sign of weakness; this could not be further from the truth.

Everything I think of, everyone I interact with, someway somehow, my thoughts always go back to Sickle Cell Disease. I try to find a correlation, I try to understand my thoughts, I try to understand my relationships, all through Sickle Cell. I also try to make sense of “regular sayings” obviously.

What wounds exactly does time heal?  Physical? Mental? Emotional? Financial? I have had the privilege of experiencing all those wounds. My opinion is definitely going to be biased but personally, I feel that time only heals physical wounds. I have had a few surgeries thus far, hopefully, no more, the wounds have healed beautifully, but even as time passes, the mental anguish that came with all the surgeries have not healed because of time.

After surgery #1, I had no time to focus on my mental health because I had to have surgery #2 a month later. After surgery #2; I had to do more therapy, had to learn to walk again while life was still going on. Time did pass me by, I had to readapt. With time, my body started healing my physical wounds. I have the scars as a result.

No one really talks about how mentally challenging it can be when you are recovering from surgeries. More time has passed since my wounds have healed, it took me a few months for them to fully heal, but the mental anguish is not something that time has healed. Everything I have faced and have had to deal with mentally and psychologically as a result of my bilateral hip replacements has had a residual impact on me. Where is the time when you really need it to heal wounds? When has enough time gone by for me to be considered healed?

One thing I can say for sure is that, time, away from what seems like everything else, can teach you how to deal with things, how to put things in perspective. It can be a great teacher. The School of Life! It has taught me that I am naturally equipped with the strength I need to live with Sickle Cell Disease , that I am a Warrior, and I have it in me to spread this awareness.

I, for one, know that I will not keep saying “Time heals all wounds” because I am still mentally wounded after 10 years, but I now have an idea on how to better handle the struggle. How to see things from different eyes, how to accept certain (nonsensical at times) situations and be in the present.

Smile, it could be worse!!!

Painsomnia…

You made that word up!!! What is that ? What does that even mean? If my blog was for SickleCellers only, I would only post the title and I would have been understood, but in an effort to spread awareness of Sickle Cell Disease, and with me being up all night because of Painsomnia, now is the best time to elaborate on what it is.

Just from looking at the word one can already conclude that pain and insomnia together are involved in this. Well yes! They usually concoct a plan and they stop you from getting the well needed good night sleep, sleep that your body needs; sleep that tends to make you feel better.

Pain disturbs your sleep and since you’re not resting, you are at risk of developing chronic pain (pain crisis). Needless to say, I had a long night.

For a long time I thought this was only happening to me. I have had insomnia since I was 9 years old. I used to stay up and watch the moon; but I don’t recall actually having painsomnia. I’m not sure why I can’t remember that, but I’m not complaining.

I started to realize that my fellow Warriors also dealt with that because I would get text messages at all odd hours of the night.

When I get to sleep 12 hours straight I feel new and I have all this extra energy. I’m motivated to do way more than I already do; if only I could get those on a regular. I’m equipped to function on 2-3 hours a week; after all, I’m a Sickle Cell Warrior.

Smile, it could be worse!!!

Grateful… or maybe misinformed???

Sometimes I think we come a long way with SCD, from where we were decades ago. Sometimes I wonder if we are to be grateful for that or if we have been misinformed the entire time. Confusing right?

When I was growing up, they used to put an age limit on my life, it started when I was 9, I wasn’t supposed to live past 9, then it was 18. I’m well in my 30s now, closer to 40 than 30, and I’m still alive. For that I am grateful but I still wonder.

One of my IG friends and fellow Warrior just celebrated her birthday, happy birthday again Jamila, and it got me thinking. It seems like growing up in the Caribbean was always more difficult with SCD than being in the USA; a lot of my fellow Sickle Cellers have said that if they stayed back home, they’d be dead by now; I think that it’s misinformation at its finest.

A few Sickle Cellers were not able to blossom into the best version of themselves because of that same claim. To them, it’s been like what’s the point of doing anything when I’m not going to live past a certain age. In my opinion, they’ve been cheated out of a future because of misinformation.

I have yet to find any scientific evidence to support that “ridiculous” claim but it’s always somewhere in the back of my mind.

I’m grateful that I was able to live the life that I did, however painful and challenging but I’m also very uneasy with the idea that some Warriors grew up with an “expiration date” and that stopped them from being the best version of themselves.

I’m praying that nowhere in the world, in 2018, there are Warriors living with that feeling. If there are, I’ll be working hard to change that.

Smile, it could be worse!!!