Who Runs Your Life—You or Your Sickle Cell Disease?
Imagine having a mutation that alters the body’s ability to carry oxygen where it is needed—sickle cell disease (SCD). Now, picture sitting in your doctor’s office as they detail the numerous risks associated with traveling with the condition. As with many things associated with sickle cell, following your doctor’s advice can be tricky. In fact, it often seems as if you have two choices—completely ignoring that advice and finding your way and what works for you, or dwelling in fear and avoiding many of the things you love, thereby avoiding a lifetime of fulfilling experiences.
Putting Fear First or Living Life to Its Fullest?
Yes, when living with SCD, some common phenomena can pose a much more significant threat than it would to others without the disease, but why should that stop anyone from living life to its fullest? As someone who welcomes the opportunity to see new places, learn about different regions and cultures, and explore this extraordinary world, taking in each experience as it comes, I refuse to let SCD run my life—or limit my enjoyment any more than I can help.
Travel Challenges for SCD Patients
Traveling with SCD does come with several challenges, some of which are detailed below.
Healthcare Access: For starters, being close to home is akin to a safety net for someone facing the disease. By remaining local, you are always familiar with your surroundings and have easy access to your healthcare team and facilities when needed. However, once you set foot out of your comfort zone while traveling, you enter uncharted territory should the need arise to seek health care or find individuals who understand SCD and can assist you.
Flight Risks: Additionally, it is claimed that flying can increase sickling due to the high altitude and other effects of being in flight for a lengthy period.
Stress: Let’s take a step back, though. Even before leaving for your travels, additional SCD triggers may crop up during preparation—even before you board your flight. Stress is often a contributor to SCD flare-ups—and few activities cause as much stress as packing and preparing for a distant locale, not to mention challenges associated with arriving on time, airline security, delays, cancellations, and more that have become more prevalent recently.
Jamaican Me Crazy: Managing a Sickle Cell Crisis During Travel
I’ve visited Jamaica several times in my life. Before my most recent visit, I had only experienced one full-blown sickle cell crisis while there—and I had been eight years old. My last trip to Jamaica—for my grandfather’s memorial—was one to remember, as it bombarded me with a pain crisis focused around my ankles.
With SCD, the excruciating pain associated with a flare-up can occur anywhere in the body. One can experience a crisis in the most unusual places, including the jaw, ankles, shoulders, or even the penis. Anywhere blood flows, you could potentially have a crippling pain crisis.
It’s crazy. There’s this constant fear with every move, the terror of my body potentially triggering an allergic reaction with every physical activity I do. Any time I experience a SCD crisis, I think of artist AR the Prophet’s song lyrics: “This that pain, this that pain.”
SCD pain has its own pulse. The pain begins as a tiny flame and grows steadily and consistently. This past visit, I arrived in Jamaica with slight ankle pain. Since the ankle isn’t the area I typically experience a pain crisis, I was sure I would be fine. I thought the localized pain would remain moderate and last a day or so. Little did I know what was to come…
That night, my ankles swelled significantly. I slept very little and had to crawl if I needed to use the bathroom. I relied on water and the medicine I had brought, but every time I stepped off that bed, I felt like I was walking into a shallow pool of lava. The scorching fire froze in my ankles with each step. I would take a deep breath merely to manage a single step forward.
Eventually, I didn’t think I could make it. I just had to sit on the floor. In a way, it’s like my body was telling me I needed to stay grounded, so I listened. I had no clue what else to do at that moment—I just wanted the pain to end.
Victory Over SCD: Making the Best of a Painful Trip
Somehow, I made it through that pain and can only look back and laugh about how hard it was for me that night. I want nothing to do with the world in those awful, trying moments of sickle cell crisis. I strive hard to achieve independence, and I’m subjected to this excruciating agony when I merely try to enjoy life and do the things others take on without a second thought.
I’ve often questioned, “Why me?” With pain so intense you can’t even stand to look in the mirror, you start to wonder why God created such an illness. After a night of gut-wrenching ankle pain, I caved the next morning and told my parents I couldn’t walk.
My uncle, a biologist, examined my leg and said you could see where it was sickling, as different parts of my ankles were swollen—some more than others. When I left for Jamaica, I didn’t think I would face this debilitating ankle pain. Perhaps the most ironic, I always travel in a wheelchair, hoping not to use it. This time I didn’t… and there I was, in Jamaica, having paid nearly $600 for my ticket and unable to walk.
SCD: Making the Best of a Bad Situation
I didn’t care. I was in Jamaica—and I was going to have a good time. I had four days to do it, four days to manifest wellness. I had taken my pain medication around the clock and tried to rest, but I found myself distracting my pain with video games, Pokémon Diamond on the Nintendo Switch.
I had planned to start my vlog, but instead, I recorded my sickle cell progress. When it came time to attend my grandfather’s memorial, my ankles were still swollen. I made the best of my circumstances and managed to move around with a cane until I couldn’t take it any longer, but I was completely debilitated. At thirty-three years old, my dad carried me. I don’t weigh much, but it’s humiliating. Even my five-year-old niece stepped in and tried to carry me.
Fight Through the Tough Times with Friends, Family, and God
I am incredibly grateful for my family in those moments of sickle cell crisis. Sickle cell disease may affect me directly, but my loved ones must stand by and watch my pain. Everyone has different reactions and emotional responses to their own pain and to witnessing the pain of others. My family was there for me, and in my time of need, I allowed myself to lean on them despite my strong desire for independence.
I was upset that I had this crisis while I was supposed to be having fun in Jamaica. I was pissed, in fact. Instead of dwelling on the negative, I did my best to rise above it. I still lifted the house, with both ankles swollen. I went to the beach. I enjoyed time with my family—and I didn’t let sickle cell stop me from living my life.
Still, I was angry that it happened, considering how well I care for myself. I haven’t been in a hospital since 2019, and since the start of the pandemic, I’ve been managing my crisis quite well at home.
There are times when you become fed up with life when things get hard, and you begin to question God—what’s the purpose of it all?
The purpose is to learn a lesson, continuous lessons even. It may be a hard lesson, but regardless, Earth is a school. If our Creator chose me as a student of sickle cell disease in hopes I would learn from it and master it, that alone tells me I can do it and that I am worthy of this life and all it has to offer, seemingly good and bad.
I felt strong as my trip ended, and it was time to pack my bags. I felt as if I had –overcome something entirely new by traveling to Jamaica and having a crisis, but still managing to have fun and do the things I needed to do during the visit.
I was proud of the warrior and champion I am—and will continue to be.
Always.
