i might die in 7 hours, and I’m not afraid.
I (14M) have a bone disease known as Multiple Hereditary Exostoses (MHE). It causes benign bone tumors to grow everywhere on my body. Although they aren’t cancerous, they are very painful when they are near a nerve.
A lot of these tumors have grown in my knees, fingers and ribs. You can probably guess there are a lot of nerves and muscles there that can be pinched and pierced. It hurts quite a lot. I am constantly at level 5 pain (scale of 1-10). I can only walk for up to 2 minutes, I can’t write (with a pen, if I couldnt type this post wouldnt exist lol) and I’m basically in agony.
We have decided I will go for surgery to saw off some of the most painful tumors in my knee. Hopefully this will restore my ability to walk. The doctors have also decided we should remove 2 of my ribs, which have cracked due to the tumors. They’ll be replaced with metal I think.
There is a 20% chance of death with all these very complicated procedures, and of course, a chance this surgery doesn’t change anything, or even makes it worse. Rolling less than 6 sided dice to determine if I live or die. But to be honest, I don’t really care what happens in this surgery.
If it works, great, I can walk again. If it fails and my condition stays the same/deteriorates, I’ve adapted to this disease enough. I can probably handle a few turns for the worst. And if I die, well, I suppose then there is no more pain.
My friends say it is wrong for me to feel okay about dying. I don’t exactly care if I die at this point. It’s in fate’s hands at this point.
In 7 hours, I’ll be on the operating table that’ll determine my destiny, see you on the other side
- A very good friend of mine has this. She went through surgery to remove some of the very painful ones around her spine I think.
She made a 100% recovery, and she was 27 years old and a smoker/drinker.
- I probably have the same disease. When i was 15yo i had two biggest tumors removed, one from my arm and one from my leg. They were really big but in couple of days after the surgery i was slowly walking again. Today, more than 20 years later everything is still fine even though i have some more tumors left. After i stopped growing, they stopped growing. I guess what i am trying to tell you is to be brave and not give up. It will be better, you are stronger than the disease.