Sickle Cell Awareness Month — Taylor & Mom
Transcript from a conversation recorded 9/2/20
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.
So we’re going to take a little break from our season two activities because we’re in September and September in the US at least is 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
For me Sickle Cell has always been something that I don’t know — my parents made it very positive for me. I knew I had different needs but they never wanted me to feel insecure about that. They wanted me to feel empowered and have a better understanding of what I could and could not do and why.
I remember as a kid I would take penicillin every day but my parents would call it “goodness” and goodness at that time came in the form of like a red syrup and I don’t…the taste I don’t really recall but I don’t remember it being something I liked to do so it’s probably why they called it goodness ao I could be excited to take my goodness so I could feel better.
As I got older the penicillin was no longer in a syrup form It became a pill and then after seeing another doctor she took me off of it completely and now my treatment pretty much just looks like blood test here and there well, I shouldn’t say here and there…yearly blood tests Sickle Cell Disease is a disease that affects the special protein in our red blood cells which is hemoglobin the healthy hemoglobin carries the oxygen from the lungs to different parts of the body. Now, a person with sickle cell makes a different type of hemoglobin which makes the cells change their shape so in children’s books that I had as a kid one in particular called ‘Puzzles’ they describe the cell looking like a banana shape and the banana shape is dangerous because that cell becomes hard and sticky and clogs up the blood vessels and so the blood can’t bring the oxygen to the tissues that it needs to so it causes pain and so the main symptom of sickle cell is these pain crises. And for me, my pain crises come about typically they’ve been if I have a sinus infection that then manifests into a pain crises or if I’m under an extreme amount of stress which as a the producer and writer in a demanding field has become something I have to manage and do yoga and stretch and exercise and drink a lot a lot of water and just minimize my stress.
And I think I’ve been doing a good job at that except for recently, I think I’ve taken on a little bit more than I can chew and so learning how to get myself relaxed and not take on too much and find spaces or find time for myself to breathe and to relax is definitely very very important for me.
Sickle Cell has not been as intrusive to my everyday life as I know many people have had it. Some people have SS , so there’s two main types of Sickle Cell Disease SS and SC, SS being the more severe I have SC. When Sickle Cell can be extremely severe patients have to get blood transfusions and a lot of other health care and attention. There are some treatments being tested like a gene editing technique called CRISPR and it’s interesting because they are kind of infusing these genetically modified cells into a patient’s body and it seems like it’s alleviating the complications of sickle cell disease so that’s something interesting to watch. I myself before this podcast probably was not as forthcoming about having Sickle Cell I never wanted to be treated differently I would cloak if that’s the word my condition until it became absolutely dire. I remember last year I was supposed to go on a trip for work to Aspen Colorado where the elevation is far too high — so that’s another complication of sickle cell is that this transfer of oxygen in our body is already a task for our cells so we can’t go to elevations that are high. For me, my kind of threshold is I think 6,000 feet but I try not to go above 3000 feet. Flying for me is fine because it’s a pressurized cabin but I couldn’t go to Aspen because even for people without Sickle Cell it’s hard to breathe in those high altitudes so there’s been times as I grow older and there was another time when I was studying abroad and we were to have an educational field trip to Tibet and I had to sit that one out. We were in China and the whole group was going to Tibet and I was like, “ugh I can’t go there”. So I went to London and visited my friend Karl instead but you know that’s not the end of the world I feel very privileged and I feel very lucky to know my boundaries to have people that will advocate for me to feel safe enough to talk about it.
My hope with these letters this month is that it will give a more full picture of life with Sickle Cell Disease. It’s different for everyone and means something different for everyone and so I just want to take the time out this month to really focus on what Sickle Cell has taught me you know, how resilient my body can be but also when to listen to my body and when to surrender and to relax. And I think that’s an important takeaway that most anyone should should be in tune with and know.
I do fear how it will change as I get older I’ve been really really lucky and I almost feel like I’m gambling and so when I think about you know starting a family or planting some roots and finding a doctor that will really care for me as I evolve in years to come those are some things that weigh heavily on me but it will all work out I know If I had to say my inspiration for this podcast was kind of a hybrid of the loss of my father to prostate cancer and my Sickle Cell and it’s funny because Sickle Cell is genetic. My mom knew that she had the trait My father did not and so I think it’s boggled me that if they did both know they had the trait I’m not sure I would be and so that’s something that has that I’ve been meditating on I guess just grateful for my father’s ignorance.
So every morning I FaceTime my mom when I’m not with her so this morning I FaceTimed her and just asked her you know off the cuff what it’s like to be a parent to a child with SickleCell she didn’t know I was recording her but here’s a bit of our conversation
Mom: Was going on?
Taylor Camille: I’m just tired Mo
Mom: I bet you are
Taylor Camille: I need to figure out how to separate my office from my bedroom
Mom: Yes I think you’re going to have to use the table in the living room
Taylor Camille: Yeah me too
Mom: Cause otherwise your bedroom becomes a hostile environment.Yeah, that is not a good place. Or your living room has to become your bedroom one or the other
Taylor Camille: yeah maybe I’ll pull my desk out
Fast forward because it was just a lot of other you know mom daughter morning catchup talk but then I ambushed her
Taylor Camille: Something that you want to say about Sickle Cell
Mom: You can’t just throw that on me on the last minute I’m
Taylor Camille: What has it taught you? What has being a parent to a child with Sickle Cell taught to you
Mom: It’s been stressful as *expletive*
Taylor Camille: the PG version of that?
OK, wait a minute. I don’t know cause it’s just I told you to be more mindful but being an attentive parent but you know allowing the child to live life you know life shouldn’t have restrictions even if you have some medical challenges it should always be an adventure but one is centered into you know cautiously and with the right precautions you can live a really active full life. But you do have to make your child aware of what the challenges are not limitations.
Taylor Camille: You remember getting me this book? I just reread it
Mom: Yes Oh yes and that’s the second one. They had another one for first meant for younger kids asked for the second stage. You see how it says second ?
Taylor Camille: Oh this handbook says part two and this one?
Mom: Oh that one
Taylor Camille: Yeah Puzzles
Mom: Yeah Puzzles is good It’s a little good little one and the funny thing is there was some kind of butterfly on I think that’s what attracted me in the first place.
Taylor Camille: Yeah I was reading that I said what?
Mom: Isn’t that ironic? And that was before you chose Aponi
Taylor Camille: Yeah, that’s what I’m very confused about I was like, what are the odds? She’s in here talking about “I wish I could close my eyes and turn into a chrysalis I imagined myself in a butterfly garden with my butterflies” Yeah like, full circle
Mom: Cause it’s truly full circle cause you know people can cocoon your child when they have challenges if medical issues and concerns or you can allow them to be prepared when it’s time to come out of that can come and be a butterfly and metamorphosize and see the world
Taylor Camille: Okay that was good
Mom: You recorded that? Hang the *expletive*up
She was upset when she found out that I recorded her without her knowing for context the puzzles book has pictures of butterflies and the girl talks about butterflies as we mentioned but what my close friends will know is that my Native American name I picke is butterfly I got my Native American name when I turned 1,so, but, probably haven’t picked up this book until recently again when I was digging through old boxes of stuff And so that just was a full circle moment for me to have you know read this book from my childhood about a girl coping with Sickle Cell and then seeing that imagery of the butterflies and that has been something that has started to mean a lot to me, so just interesting.
At the end of our conversation my mother reminded me that the things that have brought me peace are playing my record player, dancing around a little bit after exercise or before or during, having some hibiscus tea, times when I can get back in nature and walk around trees and walk by a stream. The days that I can step away from my phone or even just the hours and just finding a way to breathe and not take everything so seriously. That’s when I’m most at peace and hashing stuff out with her on FaceTime helps too. So I of course had to call her back just to, to make sure that it was no beef.
Taylor Camille: I love you. I just wanted to say, and thank you for this morning.
Mom: Goodbye. Talk to you later.
Taylor Camille: Bye.
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.
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