about the author:
Oli Groom is 31 years old with DMD. He lives independently in New Zealand, loves music and his cats, too. Oli can be reached at Oli.Groom@FamilyFriendsAndDuchenne.org
When I was diagnosed with Duchenne I was expected to die by about 15.
In a few days, I will be 31 which means I have lived to double my original life expectancy. Sadly, some people are disappointed I’m not dead yet.
In my teen years, I opened up to someone in the family I trusted about anything hoping for some support. What happened? Over time I was ridiculed, called lazy, mocked for taking anti-depression meds, called a baby, and described as a burden.
Maybe I could have forgiven that over time, but a line was crossed when I was encouraged to find a way to suicide. It took some time to realize if I took those words to heart, I wouldn’t be here. In fact, I wouldn’t have made it to my 20s.
If you have a severe disability, be very careful from whom you take advice. Anyone can be abusive or give deadly advice. That said, bad experiences like that highlight the good ones I have.
Now I have a fantastic support network for which I am very grateful.
I want to thank Mum and stepdad Trev, Grandad (RIP), and the rest of my family. Nicole for being my carer, POA, and advocate for over 10 yrs. Janet for being my teacher’s aide through high school. And for everyone else who I’ve not mentioned – thank you.