My unique (?) story
I’ve never posted or even lurked in this sub before. Today I was searching for feedback about baclofen pumps and here I am.
I’m 46/m. When I was 4-5 years old, I had a rare benign tumour removed from my spinal cord at the back of my neck. Not sure the level off the top of my head because to be honest I prefer to remain blissfully ignorant about things in the past I can’t change and would rather not think about. My parents are very supportive and it makes me tear up imagining what they went through. Doctors were not sure what was wrong with me as they did not have all the tools available today. It was, obviously, a major surgery that lasted for several hours. I remember waking up after surgery and being unable to talk as there was a tube in my throat. My dad was holding a pop-up book about dinosaurs and I was trying to say there was a dinosaur behind one of the bushes. Very vivid memory corroborated by my parents.
As for the tumour itself, it was apparently extremely rare, especially for someone as young as I was. The people who do get it are usually much older, like seniors. So for most of my life as I got older, the thought has always haunted me: Why me? My mom likes to joke that when they did the surgery, they removed the happy part, because I had been a happy little kid and my mood was much different after surgery, even being so young. I used to bang my head on the floor out of frustration due to my mobility issues, and this has carried on into my adult life as I often abuse myself when I’m frustrated.
All things considered, I was actually quite fortunate. My parents were (and still are) wonderful, although we have our moments, and my uncle dedicated himself to helping with my physio every day after school as my parents were working. I wish I had appreciated it more at the time. Physically it could have been much worse. I still have sensation below my waist and have had a sex life, such as it was. I only have use of my left arm, as the tumour was more on my left side and affected the right side. However, I didn’t look at it that way and spent much of my life feeling sorry for myself and always wondered what my life could have been like. I was considered very smart and I was pretty cute/handsome, apparently. So I always think of what an amazing person I could have been if I had the ability to walk. I realize now the irony, that I probably was an amazing person regardless, but didn’t want to be if I couldn’t be the person I feel I should have been. If that makes any sense.
I’m not exactly sure where I was going with this. Just wondering if anyone here has had a similar tumour or known anyone who has. Am I really the only one? My other intent was to ask about the baclofen pump, but I feel like that’s a topic for another post now. Writing this out brought tears to my eyes as I think back on my past and felt somewhat therapeutic. There’s much more to my story, but I think that’s enough for now.
For anyone who made it this far, thanks for reading.