Another year around the sun with Gaucher, and I am still here
Being told you may not live past age 12 changes your perspective on life
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October is objectively the best month of the year. Take my words with a grain of salt, of course, because October is also my favorite month. I love the reset, the changing of the leaves, and the pumpkin-flavored food, but above all, I love that my birthday is in October.
When I turned 27, people around me began telling me — often accompanied by the sound of an ominously ticking clock — that I was one more year closer to being 30. Time was running out.
But I was never scared of turning 30, mostly because I was told at 18 months old that I had Gaucher disease type 3, and that I likely wouldn’t survive past adolescence. So for most of my life, I didn’t fear aging: I feared not aging at all. Being told young that you may not live past age 12 really changes your perspective on life.
I am still here
But then, after hitting the age I never thought I’d live past, and then again somewhere around my mid-20s, I started dreading aging, just like everyone else does, and all the normal pressures and burdens of growing up started screaming like alarm bells. Get married. Have kids. Is that a white hair? These thoughts began to consume me as much as managing my growing health issues — such as my fragile bones — did. My birthday became less about celebrating another year of life and more about measuring my life against everyone else’s. I found myself wondering if I was doing enough to fit the mold of what I was expected to have accomplished by this point in my life.
When I turned 30, I threw a huge party to celebrate the miracle of making it to that age. I’d achieved something that researchers claimed was impossible. But now, as I celebrate yet another year around the sun, I catch myself thinking about the things I haven’t accomplished. I still hope and pray for the things society expects of someone my age, but I’m not going to agonize about the timeline of it.
Instead, on the eve of my 32nd birthday, I choose to remind myself that I am still here, still getting older, still making plans, and I’m still looking forward to another year. There’s no reason not to celebrate.
I will never reveal what I wish for when I blow out the candles on my cake, mostly because it’s bad luck. But I’ll give you a clue. It has to do with a rare disease called Gaucher.
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.
