okay this is going to be a pretty bloody...

Saturday, January 21, 2012

okay

this is going to be a pretty bloody enormous post full of serious things and lack of capitalisation.

since my careless comment yesterday, i’ve gotten a suffocating amount of messages wondering about my illness, and i promised to make a post about it when i saw fit.

this is that post.

let me start by saying - and i doubt you are unable to understand this - how insensitive it is to ask about something of this magnitude on anonymous. enquiring me about this anonymously means i’ve literally got no other option than publishing my answer on my blog (which i’d really rather not, thanks). if you’d just asked me privately, i could have answered you accordingly without shivering my blog on its timbers. also, avoided a lot of wangst, because apparently, a lot of my anons find it funny to use my illness against me and expressing exactly how glad they am i won’t be tormenting this world any longer.

okay, that’s that, now on to the actual explaining.

i’m dying.

not in the philosophical sense in which we are all dying. no, actual, painful dying of an actual, painful illness.

i’ve got chronic sarcoidosis.

sarcoidosis is a rare auto-immune disease, and there is no cure. sarcoidosis causes inflammation in organs and tissue, and, to deal with this, the body stocks white bloodcells in that area. we call these heaps of white blood cells granulomas.

sometimes, these granulomas disappear without people even having to go to hospital or the GP’s for it.

in my case, though, they do not, and eventually become scar tissue in said organs and tissues. this causes these organs to cease proper function.

take a look at the following picture:

the left is an x-ray of lungs riddled with sarcoidosis.

the right is an x-ray of these same lungs after four years. the white lines are scar tissue.

sarcoidosis is most common in the lungs, skin, heart, eyes, lymph nodes, the nervous system and the kidneys. so far, it’s been found in my eyes, lungs, uterus, kidneys, liver, legs and my upper arms. i’m the pokemon master. but with organs.

we found out i was ill with sarcoidosis around my twelfth birthday. first, lung-cancer, hodgkin and tuberculosis had to be ruled out, and it was a rather definitive diagnosis.

it wasn’t until years later we realised exactly the sort of sarcoidosis we were dealing with.

you see, sarcoidosis only kills in five percent of cases. isn’t that brilliant.

last year, august, i had a lung transplant. before that, i was on the verge of dying. i was already in hospital, breathing not by myself, but with the help of machines, when the news came.

it didn’t make me feel any different. if anything, it made me feel more hopeless when we heard my other organs were only getting worse.

now, okay, the constant physical pain i can deal with, even if it’s tiring and even occasionally a bit too much, but there’s a mental side to this too.

it’s the constant thought that your future - cut short by the simple fact that, if multiple organs are failing, your chances of being on the transplant list are zip - will be filled with pain. today was pain and ineptitude, tomorrow will be pain and ineptitude, and your future will be more pain and ineptitude.

more than one time, i’ve wanted to cut it even shorter. thinking, what’s the use, if i can’t have a future, why bother? but then i think of the trouble people have been through, and the people who keep telling me to go on, and the pain is worth it. so don’t tell me to kill myself to save you the trouble of looking at my face. because i won’t.

things you don’t tell me:

‘oh, we could all be dead tomorrow’, because if you tell me that one more time i will actually punch you. because it’s not the same. if you get hit by a car tomorrow, it is not the same than spending every day in a blur of morphine, pain, morphine, pain, knowing you’re only waiting for the inevitable. i can’t do anything but study, but i wish i could. knowing when you’re going to die and how you’re going to die is not the same as getting a vault dropped on your head as you’re venturing off to the grocer’s.
‘stop whining about it and live life while you still can’. this actually makes me want to set hair on fire. because i can’t live life. because of the pain, the weakness and the fact i get tired to the point of collapsing after walking the stairs. i can’t live life. fuck you.

you don’t tell a cancer patient these things. because they’re visibly ill. they’re visibly reduced to lying small in a hospital bed.

sarcoidosis is often compared and confused with cancer, because they look so incredibly similar.

the only difference is that there are no visible symptoms of sarcoidosis.

you can’t see it. it kills me nonetheless. so before you go off telling me to get off my butt, it’s not that serious, think of what you’re saying.

i’ve been given up, declared dying by every doctor who has treated me so far.

weekly hospital visits, needles, scars the size of my hand, two visits to my psychiatrist per week, and no future. tell me to stop doom-thinking one more time, and i will smack you.

spread the word and, for fuck’s sake, if you want to ask me things, do it properly and privately.