The diagnosis that was supposed to end my life early set me free to truly live
With type 3 Gaucher disease, I was told I had an expiration date
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I was told many years ago that I had an actual expiration date. Put that way, it makes me think of a banana in the grocery store eventually going bad. I know it sounds a bit dark, but that’s what comes to mind.
When I was 18 months old, my family was told I wouldn’t live to see my 12th birthday. As I grew older — past 12, then 20, and even 30 — I sometimes wondered if that doctor ever thought about me again.
I don’t blame her. She had limited information about life expectancy for type 3 Gaucher disease. I grew up thinking my life would be short, and when I outlived that first prognosis, I had to figure out how to picture a future for myself.
Other than being sick sometimes, I had a normal childhood, thanks to my parents, so I wasn’t bothered much. When I told them I wanted to be a ballerina, they encouraged me and let me dream big.
Then my teenage years arrived, and like most teens, I rebelled and thought I knew better than my parents. How could they understand what it felt like to live with a constant reminder that time was running out?
I’m 31 now, but by the time I turned 20, it was clear the doctor had been wrong. I realized I might have many years ahead, and that’s when my dreams started to grow. I dreamed of traveling, living in a big city, and one day having a family.
Living and dreaming
But our dreams change as we grow up. Like many people my age, I stopped dreaming big for a while. It felt like the ticking clock had finally gone quiet. The voices from my childhood were gone, and not being told what I couldn’t and wouldn’t do left me asking, “What now?” Growing up thinking I had a time limit made me think everything I did had to be big and bold, that any day could be my last, but I had to learn to picture a future that was about more than just surviving.
I had to find my own way.
Life to me has always looked different than it has to my peers, and living with a time limit can be stressful. There’s always that reminder that I’m different because of a diagnosis I never asked for. I could just focus on everything that goes wrong; I could complain about getting enzyme replacement therapy infusions or how much it hurts to break a bone.
But there’s so much joy in celebrating birthdays I never thought I’d reach, or even in days that don’t go well. It just means I’m alive and get to experience everything life has to offer. I’m learning to appreciate everything, both the good and the bad, because every breath feels like a gift I can never take for granted.
I have tough days, too, but I choose to remember all the good things people have said or done for me. The diagnosis that was supposed to end my life early is what set me free to truly live.
No one knows what the future holds. But I do know we each get just one life. So I’ve chosen to keep the same big imagination I had when I was 7. I choose to keep dreaming big.
Note: Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
