A Life Worth Living: How a Shorter Life Expectancy Affected Me

Editor’s note: As of September 2024, Oxbryta® (voxelotor) has been voluntarily withdrawn from the market by the manufacturer due to safety concerns. Pfizer, the manufacturer of Oxbryta, has also ceased distribution and discontinued all active clinical trials and expanded access programs for Oxbryta. Patients and caregivers should contact their healthcare provider about stopping Oxbryta and starting another approved medication for the treatment of sickle cell disease.

Diagnosed at age 4, before I knew what life was or why I had come to be, I was somehow keenly aware that I was not like everyone else around me. It was as if an invisible curtain encircled me. I could always tell by the way the grown-ups would sidle up to one another at family get-togethers and whisper, gesturing in my direction.

On good days, when I wasn't in much pain, I would bounce on my Daddy's knee while we made funny faces and blew raspberries at each other. On bad days, I woke writhing in pain, often in the middle of the night, unable to stand and walk. I remember feeling betrayed by my body. I wondered how much longer the pain would last. In general, I had an inexplicable feeling that I didn't have as much time as those around me.

Adolescence: So how much time?

As my doctor appointments became more frequent, I became more and more curious about exactly how I was different from my family. I wanted to know why it seemed that as I grew older I got less beaming smiles and more pursed lips of pity. I had always had a thirst for knowledge and as I grew into adolescence. By the time I got to high school, thanks to the dawn of the internet age, I discovered the grim reality of my situation.

What little information I could find on sickle cell back then was immediately banked in my mental vault. With every new fact or noteworthy mention, I filled up on the knowledge of what was happening in my body. However, no matter the route, I still found myself arriving back at the same conclusion: my life would be a short one. And sadly, this explained the looks on all those faces.

I deserve happiness

Although I enjoyed learning, the physical demands of academic life were simply too much for my sickly body. By this time, I was counting down to graduation, but for different reasons than my friends. 1999 consisted of me transitioning from middle school to a very large high school, then to a smaller high school which was in the township where our new house was being built. These years were the hardest; contemplating what would become of me and longing for a "normal life."

Marriage & motherhood

But just before I would make the last of these transitions, a most peculiar young man literally walked into my life and changed everything. You see, before this, I was contemplating my future and how I would have any impact on anyone. My aspirations were big, especially for the time and place.

But deep inside I felt my limitations would not allow me to achieve them all, so I began rationing hope. All the knowledge I had been storing up communicated to me that I would most likely not be able to bear children or live long enough to have any significant effect on anything or anyone. Although I had big dreams, that was all they were to me then.

Until one blessed Sunday when I met my now husband, Anthony. Before his face could even come into view, I first noticed his kingly posture. I had never before seen a boy my age (we were 15 when we met) with such intention in his walk. It was like he was always aware of everything around him, even though he carefully reserved his words and reactions. It wasn't simply infatuation, more than potential: It was destiny. Suddenly, God introduced me to a new type of hope. Maybe I would live.

Coping with a shorter life expectancy

Fast forward 20-plus years and you'll find me blissfully married to my high-school sweetheart. Together, Anthony and I have survived more than your average mid-30s couple of today. He has been my caregiver, my friend, my provider, my protector, my love, the father of our son and so much more. I found myself struggling over the years with the unseen damage sickle cell was having on me. I felt like I was in a hole so deep I could barely see the top.

But at every turn, I'd look into my husband's eyes and be reminded of that hope. I began to understand that It didn't actually matter what the books said about my life expectancy. And how lucky I am to be living in the age of humankind's most advanced medical technology. That was it, I was determined to prove all the predictions wrong. Coping with the thought of a shorter life expectancy became easier.

Finding my purpose

My 35th birthday marked the beginning of my darkest-just-before-the-dawn moment. I had found myself now fully wanting to live not only for my son and family but also for myself. I had cast aside all thoughts of the worst-case scenario and began clinging ever closer to my faith. This was during the same time as the initial onset of Covid-19, which eventually caused me to leave a job I loved due to the health risk.

I was also at my lowest point because although I now had the will to live, my body was still on the decline. I felt like a car running out of gas in the middle of nowhere. Until the day came when Oxbryta showed up at my doorstep.

Little did I know that soon I would experience for the first time a full tank and tune-up! Now my cells weren't sickling, my joints weren't aching, and I actually had energy instead of being in the deficit. I was able to match my fully established will to live with my newfound vitality.

Having been freed from the binds of sickle cell disease in so many ways I now found myself most eager to live more than ever. I rededicated myself to warriors everywhere and I haven't looked back since.