Why be normal?

For the last 17 years my hand has slowly been getting destroyed. Its been closed, open, dislocated fingers, and eventually everything about it was deformed. My first hand treatment was casting my fingers open but with dystonia this usually doesnt work. It was one of the worst pains I ever experienced and I had to go back and have the cast cut off that night. I had my first hand surgery in 2019 to "fix" some of the damage that was done from my dystonia. Little did I know that would turn into many more surgeries trying to relieve my discomfort and my anxiety of having a deformed hand. I wanted it to look normal so bad. I was so embarrased by how my fingers looked that I always had my hand in a sweatshirt pocket so I could hide it from the world. I never mind sharing my story to spread awareness but how embarrasing is it to drop groceries everytime you try to shop, or struggle to pick your toddler up. Over the last couple years I started seeing a new hand doctor that my mother in law told ne about. The problem Ive always had is that the orthopedic doctors don't know enough about dystonia and the neurologists don't know enough about the damage it causes. Anyway, this doctor told me my last option to try to fix my hand is to fuse my index finger. That finger had started to bend backwards so we thought if I had it fused so it was slightly bent it wouldn't look so weird and it wouldn't hurt as bad to use it. I put the surgery off for a while because Max was a baby and I was afraid of anything permanent but finally, last Monday I had the surgery. I had my last botox injection in February so I thought I would be good to have the surgery now. The thought was that my hand would be relaxed enough while the fusion healed. When I woke up from the surgery I was shocked to see that my hand was casted with all my fingers straight. All my fingers except my index finger, even after botox, have been closed in a fist for years. The botox relaxes them slightly but they have not been fully opened in many many years. The pain in my fingers during the days following my surgery was pretty severe. I could feel my hand trying to close and eventually my fingers did close inside the cast. A couple days after those fingers closed, I could feel my index finger spasming. I get sudden severe pain and can feel my finger trying to bend backwards. I thought it was just the feeling from years of it happening and it cant possibly be pushing against a fusion, can it? I decided to peak into the end of the cast because I could see the tips of my fingers and sure enough, my finger is bending backwards. What I discovered is that the part of my finger that was fused was the PIP joint but the spasm had now traveled to the end of my finger and it appears to be the DIP joint now trying to bend back. Unfortunately I have had some insurance trouble and my new insurance isnt covered by my neurologist so I cannot get an immediate botox injection to try to calm the spasm down. My DBS also doesnt seem to be working so Im not sure what my next steps are. I will be getting my cast off this Friday if I can stand it that long and we will see what happens. I am trying to stay positive but boy is it hard. I am tired, I am in pain but most of all I just dont like how my hand looks and just want it to be normal. But then I started to really think about what "normal" is. Why do I care about being like everyone else? My situation is unique and maybe I can use it to share it with the world and maybe I can help someone who might be going through something similar. When I was first diagnosed, 10 years after my symptoms started, I felt all alone and it took time to find people I could relate to. Ive some friends through this journey and I just want to be there for others who feel the way I did. So if you are going through a hard time, even if its not dystonia, please reach out. I would love to talk, just listen or help find doctors and things to help. ❤