My mother used to say she didn’t know if she would ‘raise me’ meaning she wasn’t sure I would survive childhood. She said I almost died when I was six weeks old – never elaborated, just that I developed tiny pimple-like, white dots all over and had to be taken to the hospital. She was afraid I would die. Of course I didn’t and childhood was as normal as anyone could expect, considering the frequent belly pains, upset stomach and the constant need to lie down.
I could often be found curled up somewhere reading or coloring or writing stories. Looking back now I understand that it was malaise, but back then, I was just considered a reserved child and puny too.
At thirteen, I became seriously ill – severely jaundiced, high fever; no diagnosis. That was just the beginning and the hospital quickly became my second home. I remember being temporarily released to celebrate my 16th birthday, and again to take the exit exams – Cambridge O’levels – from secondary school.
Finally, at eighteen, a diagnosis – chronic active hepatitis (now known as autoimmune hepatitis) – and the only known case on the island of Barbados at the time. I yellowed, my abdomen became painfully distended and my organs threatened to shut down. Prognosis – a five-year life expectancy. I was put on large doses of steroids (the wonder drug) and managed to stay clear of the hospital ward for the next few years.
I dived into life with every intention of making each day count. I became a teacher and gained a scholarship with the island’s national dance company (The Barbados Dance Theater Company) – first two entries on my bucket list. Checked. The following summer, I traveled to London – item number three checked. But even on steroids my immune system continued to destroy my liver. Cirrhosis set in and just before the Christmas of 1998 I underwent emergency surgery for hemorrhaging esophageal varices. Close call!
At long last, some uneventful years, even though ultrasounds showed that only about 30% of my liver was functioning. The cirrhosis was widespread, but it wasn’t until 2004 that I began to see a hepatologist (liver specialist). Things deteriorated rapidly from there. I needed a new liver and fast.
During the second week in March of 2005 my first liver transplant was a success and I awoke from surgery feeling better than I had in months. But that was short-lived. What happened next is as it was told to me by my husband. Within the first week my new liver failed. For six days I waited in an induced coma and on the seventh I was re-transplanted. A Miracle!
The first year following the transplant was extremely challenging – constant nauseous, on the verge of vomiting, and scared to death of the tri-pronged surgical scar that I now regard as my personal trademark. But life slowly got better and I was able to pick up where I left off.
Then, in 2010 problems began to reappear. I’ve had to be hospitalized at least once every year since then – late stage transplant complications. Five years later, health conditions finally forced me to take long-term medical leave from the teaching I loved so much.
For the next two years, life revolved around medical facilities; consultations, waiting, procedures, testing, waiting, pharmacies, waiting, waiting.
February 2017 and a diagnosis of colon cancer, followed by a colectomy and ileostomy 5 months later.
Now writing helps me to continue living in the sunshine.