Sickle Cell Awareness Month — Jemela Williams

Transcript from a conversation recorded 9/30/20

please excuse any typos. link to listen to the recording of this transcript here

Beyond Our Cells is a podcast where I, Taylor Camille, share stories by those living a life fully and beyond any stigma or perceived limitations a health condition may have on their day to day lives. As always, please share and subscribe if you haven’t already.

We’re continuing our series for Sickle Cell Awareness month Sickle Cell Disease is the most commonly inherited blood disorder in the United States affecting an estimated a hundred thousand Americans It occurs primarily in African Americans although it can be seen in other races as well however, one in 500 African Americans have the disease. I am one of the ones in 500 and so this particular disease is very close to home for me.

In a series of letters, we’ll hear from other people with Sickle Cell each week of September and then in October, we’ll pick up where we left off this season, talking to Black men.

So we have our last reflection for Sickle Cell Awareness month. Today from Jemela Williams I found her on Twitter and then kind of looked into her background and she’s been a huge advocate in spreading Sickle Cell awareness and her story. Unfortunately, we don’t have her voice recorded But I’m hoping my voice will suffice. Jemela is 39 years old, she’s from Kansas City Missouri and she shares with us what Sickle Cell is, what it means to her amongst many other reflections. So here’s my reading of Jemela’s responses:

I have Sickle Cell anemia hemoglobin SS. Sickle Cell means I have to be tough brave and fight even when I don’t want to. It means positive and negative things really. On the negative side it means that at any time the unpredictability of Sickle Cell disease can change my life and mess up any and all plans I might’ve had. On the positive side Sickle Cell disease has taught me that I am much stronger and much braver than I ever thought I could be. Sickle Cell disease means having to be your own advocate more often than not. And it definitely means being a buil-in Sickle Cell disease educator because you’re constantly having to educate and explain to others what it is what it means and why it still doesn’t limit who you are even if it limits your health.

If I’m dating someone I don’t tell them initially that I have Sickle Cell disease until I know it’s something that may be serious or might turn into something serious. In friendships or even with a stranger I have zero problems telling anyone that I have Sickle Cell anemia and schooling them all about it too. I do it a lot I really have no problems spreading awareness and educating anyone I meet about Sickle Cell disease. It is something I have never been ashamed of or afraid to say out loud and let everyone know.

So much triggers pain crises for me, I think my worst trigger is and always has been dehydration I always used to tell my mom that I got the wrong disease because I have never liked drinking water or been great at drinking it at all. But I am so much better than I used to be I’ve tried everything from flavored water to cool water ice cold water every kind. Now I’ve found that I’m more interested in drinking it If it’s ice water and it has to be cold not room temperature, completely cold or ice cold. I’ve also gotten better because I started taking Endari in 2019 which is a medication for Sickle Cell disease used to reduce crises and hospital stays. It’s a powder, you can mix in yogurt applesauce or liquids as long as they’re cold not hot liquids. I used to mix it with juice but found I was drinking far too much sugar so now I seldom use juice and I drink it with water regularly.

The pain of a Sickle Cell crisis from dehydration is unbearable and it makes it 10 times worse for the medical staff to find our already hard to find veins. You wouldn’t believe all the places I’ve had IVs in. I really feel the pain of Sickle Cell when weather changes like drops in temperature and mainly when the weather is warm one day and it drops a few or more than a few degrees the next. Those weather changes are huge triggers I wish more people knew that people like me, like us, with Sickle Cell disease are not just waiting around to die I really think a lot of people believe that to be true, really.

We may have a disease but we’re no different than anyone else. We want full lives, families and we have hopes and dreams just like everyone else and when we do go out and live those lives have those families live out our hopes and dreams it is harder because we do live differently. We have to live day to day with an unpredictable disease but we don’t let it stop us. We are not letting our disease determine our lives. I wish people knew that when we have fatigue and are unable to move, to do things we want, we’re not being lazy. Fatigue is a huge part of Sickle Cell disease and it’s just as horrible as the pain is and some days the fatigue is even worse than the pain. I also wish people knew that we all are not drug seekers. We are pain relief seekers. If anything our pain is very real and we deserve to be treated with respect compassion and dignity regardless of our race or disease.

Sickle Cell disease has taught me to listen to my body more. It took me a while to understand that every pain every issue I have with my body isn’t always necessarily Sickle Cell disease so it’s very important to have specialists who can access those individual issues to ensure that every part of our bodies are working the way they should so we don’t have more complications due to Sickle Cell disease that could lead to organ damage, pain crises and other issues.

I take care of most of my pain and even the bad crises at home but it’s important to listen to my body and know that sometimes you just have to go into the ER even if you don’t want to. I like to say I’m brave resilient and unbreakable. Sickle Cell anemia has made me that way My friend Kevin Wake and I have to use his name because it’s not my own quote, he always says that Sickle Cell is his diagnosis, it’s not who he is. As in, Sickle Cell doesn’t define me or who I am.

I became active on social media because I was so sick of not seeing anything on the TV on news in any media about Sickle Cell disease I felt like when they did show someone with Sickle Cell disease they were sick or in bad condition because of some setback from the disease. They never show us thriving and living our lives without IVs needles oxygen in a hospital bed. I also had two friends that had passed away many years ago and I got tired of not having any friends at all with Sickle Cell disease. I started tweeting about Sickle Cell disease and getting involved with the local Sickle Cell Midwest, I attended support groups asked how I could help promoted the groups on Twitter and I was blessed to attend my very first convention. I now have met people with Sickle Cell disease from all different countries and States and I’m happy that I now have friends with Sickle Cell disease that I can talk to anytime and I’m grateful to be able to spread awareness and speak up for those who can’t and for those who are no longer here. Now I’m so proud of the amount of Sickle Cell disease info, organizations and warriors that I’ve found in community on Twitter what really helped me was finally attending my local Sickle Cell disease chapters the Uriel E Owens Sickle Cell disease association of the Midwest support group for Sickle Cell warriors. I didn’t have friends with Sickle Cell disease so it was so refreshing to be able to meet people just like me and know that I wasn’t alone in feeling what I feel. It was a relief to be able to express myself freely and not be ashamed to tell people about how I truly feel and talk about how much I hurt and how Sickle Cell disease truly affects me. The Uriel E Owens Sickle Cell disease association of the Midwest, or as we call it, Sickle Cell Midwest has been incredibly helpful to me in finding my voice as an advocate, taking better care of myself and my diet.

And just by being there for me as not just fellow board members, but as friends and ultimately family, I have one learned and continue to learn so much from them, especially since becoming a board member.

Two of the board members who are also warriors, Kevin and Eric have taught me so much about being an advocate, dealing with my Sickle Cell disease in healthy ways, and both have done so much for Sickle Cell disease and patient advocacy. I feel like I’ve learned how to be an advocate from the best.

What brings me peace is music. I love singing. I love dancing. There is not a day that goes by when I don’t listen to music. It is calming and soothing to me in times of sadness, happiness and pain. I even have a Sickle Cell pain playlist on Spotify that I use when I’m hurting.

While I’m waiting for the pain meds to kick in I’ll lie down and use my heating pad and put on my earbuds and listen to my playlist and try to calm myself down as much as possible. So the medicine can do its work and hopefully the pain will lessen. It is soothing and I find it incredibly helpful. Oftentimes by the time the medicine kicks in and works, I’ll already have drifted off to sleep.

Thanks for listening. That was our last reflection from Jemela Williams for Sickle Cell awareness month this year. I hope you enjoyed and learn from the stories that were told this month. We have a link to Jemela’s playlist in the show notes. We’ll pick up our season two talking to black men about their health stories.

The first episode of our return will feature Donja Love.

Donja Love: In terms of our community, the Black community, when I think about our relationship, to, to our health, to pain, to trauma, to, medical services — I just look at it through a historical lens and knowing that, we have truly every right to be where we are as it relates to our understanding of health and how we navigate and maneuver around health and health issues.

Beyond Our Cells is an original series produced and hosted by me Taylor Camille, a variety of the series artwork shared here and on our Instagram @beyondourcells are created by Carmen Johns and Sierra Hood. My hope is that these listening’s have left you with a warm heart and an even cooler mind. I hope you are left feeling able to seek peace in the spaces and places you may find yourself in.

If you’re interested in being on the pod or have any compelling leads, please shoot us an email at info@beyondourcells.com and subscribe and share if you haven’t already.

Check out our feature on Well & Good here