Hello! I'm Ray I am 15 and I got diagnosed early last year with Chiari Malformation 1 but I have had the symptoms (mostly headaches) since seventh grade. I got a depression surgery late last year. I chose to get another MRI because my symptoms stayed consistent. My Neurosurgeon said that I should get another surgery because the last one didn’t help. Then again this came from the man who said I could continue playing volleyball 14 days after my surgery. My mom being the protective smart mother that she is doubted the surgeon.
My parents got our insurance to accept an appointment with one of the top Chiari surgeons in the US. Once meeting with him we learned that I had generated a complex chiari over the time since my last surgery. When we were coming to the topic of whether I should get another, more intense surgery he asked me the question “How is your quality of life?” The question kind of took me by surprise. I mean how am I supposed to answer that? If I told him all of what I am thinking it would be something like, “Well I have played sports all my life and I can’t do that anymore which *****. Every time I cough, sneeze, jump, or wear the rubber bands on my braces I have to lay down because of a headache. I can’t do nearly any of the physical activities I used to be able to do. But I am not at poverty level and I have good grades soooo.” My answer ended up being “Yea I think I’m good.”
Now that my story is out of the way whewww. Here is my real question. How do I deal with the constant struggle that I can’t do anything? I am a sophomore in high school. I am supposed to be at my prime; running, jumping, playing sports. I mean even above all that I can’t wrestle with my dad anymore. I can’t do the fun bonding activities I used to do with my family.
I know that all this sounds totally selfish, but trust me when I say I don’t bring this topic up with hardly anybody, so this is literally my venting of months and months built up. I realize the God’s journey for me is different than most peoples and I am okay with that. I just want to learn how to handle it.
Anyways if anybody can answer my question I would greatly appreciate it. :)