I went to the doctor today to see if I needed to wear my splints again after 6 months without them. Last we saw him, he did a CT scan of my entire body, and concluded that my air passage, something they really struggled with in my last surgery which they had to bail out of, wasn't in an easily correctable place. He said he'd contact his "people" before he told me exactly what that meant.
Today after assessing my feet, he said I don't need to wear the splints. However, the usually joking Dr. Gordon suddenly got serious. He pulled up the CT scans, and showed me some things. My airwave, at one point, is exactly 3 mil in diameter. This is absolutely dangerous.
If I were to get in a car accident, choke on something, need a sudden operation, or even get something as simple as appendicitis... I'd die. There's no method to reach my airwave as of now. I'm in need of a surgery to remove a once-dire rod from my femur, because now it's scraping off the back of my kneecap. However, I can't have this done as they can't get a tube down my throat [The last surgery to get out this rod was when they discovered this.]
I am NOT afraid of death. I've gone through 35% life threatening surgeries before, and was perfectly ok with writing my will. I've already made peace with death before, it's nothing new.
However, now, when I'm signing up for college, making all of these preparations for the rest of my life, I feel like I'd be wasting something grand if I died now. My parents, myself, and others around me have invested far too much in my success in life. I feel like I'm slapping all of my potential in the face with this.
What's worse, is I'm totally helpless. I can't stop it from happening. I can't avoid the reality of it all. I'm NOT the sort of person to rely on false hopes. If you plan for the worse, everything else will be the best.
Now I'm going to have to do something with my life. I have to do something to insure my mark will be left somewhere with some meaning to someone.
My doctor is contacting several experts about solving the situation. This in itself is just as, if not more dangerous than the actual threat my small windpipe currently poses.
They'd have to go in through my neck, which is dangerous in itself because I've been fused and have NO neck rotation at all. Second, they'd have to shave off tissue in the throat, a process which is essentially a 1 in 20 chance of failing, and killing me with absolutely NO method of recovery. It's a "Too much, dead." sort of deal. Lastly, the after effects are brutal. I may have to learn to speak all over again, as my entire throat area will be rearranged. That is, IF I could still talk. My life as a vocal poet would be over. I don't have normal fingers, so sign language is pretty much out of the question. I might not ever even breath the same, and may have to have a trach the rest of my life, or a significant portion of it. This in itself poses the possibility of almost unavoidable illnesses associated with it.
I feel to godamn hopeless right now. I can't alter this with any of the strengths I possess. For once, my life is at the mercy of things far outside of my spectrum, and I ****ing hate it. I hate it and I've never felt this sort of hate before. The worst part, is that I have no adrenaline. No useful energy. The hate is almost natural, as if it must be there. It doesn't make me frown or anything. It's just hate. I don't want to be a being of hate.
I'm not really looking for anything from anyone here, I just want you to know that I might not be the same person anymore. I'm just not in the mood to be me.
JediKirby
Today after assessing my feet, he said I don't need to wear the splints. However, the usually joking Dr. Gordon suddenly got serious. He pulled up the CT scans, and showed me some things. My airwave, at one point, is exactly 3 mil in diameter. This is absolutely dangerous.
If I were to get in a car accident, choke on something, need a sudden operation, or even get something as simple as appendicitis... I'd die. There's no method to reach my airwave as of now. I'm in need of a surgery to remove a once-dire rod from my femur, because now it's scraping off the back of my kneecap. However, I can't have this done as they can't get a tube down my throat [The last surgery to get out this rod was when they discovered this.]
I am NOT afraid of death. I've gone through 35% life threatening surgeries before, and was perfectly ok with writing my will. I've already made peace with death before, it's nothing new.
However, now, when I'm signing up for college, making all of these preparations for the rest of my life, I feel like I'd be wasting something grand if I died now. My parents, myself, and others around me have invested far too much in my success in life. I feel like I'm slapping all of my potential in the face with this.
What's worse, is I'm totally helpless. I can't stop it from happening. I can't avoid the reality of it all. I'm NOT the sort of person to rely on false hopes. If you plan for the worse, everything else will be the best.
Now I'm going to have to do something with my life. I have to do something to insure my mark will be left somewhere with some meaning to someone.
My doctor is contacting several experts about solving the situation. This in itself is just as, if not more dangerous than the actual threat my small windpipe currently poses.
They'd have to go in through my neck, which is dangerous in itself because I've been fused and have NO neck rotation at all. Second, they'd have to shave off tissue in the throat, a process which is essentially a 1 in 20 chance of failing, and killing me with absolutely NO method of recovery. It's a "Too much, dead." sort of deal. Lastly, the after effects are brutal. I may have to learn to speak all over again, as my entire throat area will be rearranged. That is, IF I could still talk. My life as a vocal poet would be over. I don't have normal fingers, so sign language is pretty much out of the question. I might not ever even breath the same, and may have to have a trach the rest of my life, or a significant portion of it. This in itself poses the possibility of almost unavoidable illnesses associated with it.
I feel to godamn hopeless right now. I can't alter this with any of the strengths I possess. For once, my life is at the mercy of things far outside of my spectrum, and I ****ing hate it. I hate it and I've never felt this sort of hate before. The worst part, is that I have no adrenaline. No useful energy. The hate is almost natural, as if it must be there. It doesn't make me frown or anything. It's just hate. I don't want to be a being of hate.
I'm not really looking for anything from anyone here, I just want you to know that I might not be the same person anymore. I'm just not in the mood to be me.
JediKirby
ᵗʰᵉᵇˢᵍ๒ᵍᵐᵃᶥᶫ∙ᶜᵒᵐ
ᴸᶥᵛᵉ ᴼᵑ ᴬᵈᵃᵐ
ᴸᶥᵛᵉ ᴼᵑ ᴬᵈᵃᵐ
