My Journey to Happily Ever After
I’ve always been enamored by Disney’s animation and storytelling, eagerly anticipating the blissful end of the fairy tale. The simple meaning of happily ever after is that happiness pervades onwards and forever. Like many children, I believed my hopes and dreams would come true and I'd soak up happiness but deep down I’ve often wondered, “What happens after the fairy tale?!”
Once upon a time, I was diagnosed with sickle cell anemia (HbSS) at 18-months old by the family pediatrician. HbSS is the most severe form of sickle cell disease where atypical hemoglobin molecules distort the red blood cells into a sickle, crescent shape. As a symptom of my disease, I experienced some of the debilitating sickle cell markers including jaundice, severe fatigue, pain crises, infection, avascular necrosis, mini-strokes, and much more.
The state of my physical health as I aged into my 20s and 30s got significantly worse and seemingly impacted all facets of my life - mental, emotional, psychological, social, financial, spiritual - and everything in between. For over a decade, I arduously searched for a cure and in 2019, I participated in a clinical trial receiving an allogeneic stem cell transplant at the National Heart, Lung and Blood Institute (NHLBI) at the NIH.
Preparation for the transplant was no small feat and the 6-month process was grueling, to say the least. If I wasn’t injecting hormones to stimulate healthy egg development and protect my fertility, I was leaning against the sink puking my guts out; the nausea was an awful side effect of chemotherapy. There were days where I questioned my decision and wanted to tap out but this had been a long-standing dream. I wanted to see a fully-realized fairy tale and author my own life story.
Last year, I penned an open love letter to sickle cell disease, detailing my relationship with this invisible disability. Like every love story, we’ve had our fair share of ups and downs, but I needed to establish patience, compromise, trust, and self-acceptance to get to a healthy place because full disclosure, SCD is the stage on which I’ve built my perfectly imperfect life.
With a revamped immune system and sickle cell behind me, I was hopeful that my happy ending was just around the corner but the post-transplant recovery has been quite tasking.
Speaking candidly, the quality of my health has seen a 180-degree change and while I try to rebuild my life, I do feel my mind and body getting stronger. There are days/weeks where it feels like I’ve taken multiple steps back and the impact of those missteps on my mental health is overwhelming. It’s like you’ve signed the contract, but didn’t read through the fine print. Yikes!
An adjustment period
What I can tell you is adjusting to a new identity requires a lot more mental effort than any patient/provider realizes. Mostly because I have the immune system of a 2-yr old toddler but the body of a sickle cell patient in her 30s. Some of my vital organs, tissues, cells, joints, and systems have been damaged over time.
Like other patients in the global SCD community, I have a daily list of medications to support my recovery, need to stay hydrated, engage in low-impact physical exercise, and practice healthy nutritional habits. Chronic pain is a primary marker for sickle cell so I’ve had to find integrative medicines and complementary therapies for pain management that work for me.
Transplant recovery is an ongoing process but in my quiet reflective moments I can’t help but wonder, “Is this the sequel to Happily Ever After?” There is more to come so all aboard the express train to ‘Life After Transplant’ and let’s unpack this new identity together.
Do you consider yourself an advocate for sickle cell?