A lot of people, on a daily basis, ask me how I’m feeling. Some even treat me like I’m on my deathbed, which makes me feel all kinds of special. It gets a bit daunting reciting the same thing every day, especially since a good portion of people know I have multiple systems working against me at once, and they want details. I’m writing this up as a small guide to How I Feel™, and a bit of the why. I skipped the smaller stuff, because these are the main concerns out to suck my life force.
Let’s start with the big dog everyone is worried about: The thing in my head.
The first culprit:
First, some perspective. Here’s the area the thing is, called the petrous apex:
And this is what it looks like when there’s a thingy in there (this is not my head):
Not pretty, eh? Doesn’t feel pretty either. It doesn’t have very far to go when it grows, so it pushes on the facial nerves. Or the carotid artery, your inner ear canal and various innards. Eventually it will wreck all your shit in there and start eroding the bone keeping it out of your brain. That’s not good either, I think you can guess why… we like having brains They’re good for us! Best left uneroded.
So due to this happy little bastard in the right side of my skull (bonus: while looking for this, they found my sinus cavity has cysts. Explains the sinus infections!) I am usually trying my best not to fall to the right (balance and all that, dizziness) I always have a headache, I can’t hear terribly well, sometimes my ear bleeds. My face will go numb and become difficult to speak with, or just tingle til I want to remove the skin. The pain will go down the back of my neck into my shoulder, and radiate as far down as it likes. Couple this with my previous issues from too many concussions and I’m a speechless, slurring, hard of hearing, forgetful idiot sometimes. I’ve become a professional at hiding it, however, so most people just think I’m drunk. It’s fun to play with.
What we have learned:
I still am not sure what it is. They just keep referring to it as a granuloma, which is slang for we don’t fucking know. It isn’t fun, and makes my head all stupid. I cannot afford treatment so I just deal with it.
The second culprit:
Next up, most of you are aware I have Crohn’s. I will not provide any pictures with this one because asses and poop. So this one is actually a bastard, since it’s been with me for the last twenty-five years. It never gets better, and I certainly cannot afford the medications for it, so I just go about my day til I end up in the hospital for it eventually.
What this one does is simple in some respects. It is an autoimmune disease, and it attacks (mainly) part of your digestive tract. Any part it pleases really, so it could be a surprise! Mine has no specific place, so it’s always a gamble when I go in and wave my hand absently around my stomach at the doctor when he asks where it hurts.
“It hurts about from the everything here to all my everything. Please fix k.”
But! It doesn’t just hurt your tummy and make eating a chore. It can wreck your eyesight from inflammation, cause nasty arthritis, skin problems, various body pains and all around ick. Everywhere. Kinda like the idea of lupus but with more crapping. That’s only in the more hardcore cases on the moderate to severe scale, though, and most people get remissions.
I have it moderate to severe and I’ve not had a remission for more than a a couple months in ten years. So you can guess how I feel, usually.
What we have learned:
Shit sucks, yo. Nah seriously, those times I rapidly lose weight, saying “you should eat more” is a fine way to get a big fat shut the fuck up your ass. I have no qualms about putting things in your ass, either– I’ve had it done to me often enough, and the bastard made me pay him.
The third culprit:
And last but not least, the kidneys! How could we forget the kidneys? Most of you probably don’t know that in my family, we have a nifty guy hitching about in our DNA called PKD, or polycystic-kidney disease. It looks like (fair warning, ick) this:
Also not pretty stuff. This one tends to shut down the kidneys and put you on the everlasting list of doom awaiting another from a donor, while little machines pump fluids in and out of you so you don’t die. Mine haven’t failed as of yet, but this still comes with bonuses.
I found out very much by accident after having some scans taken when I injured myself a few times in one year (I got hit by a moving van, later fell and wrecked my knee, etc. Good year!) the doctor pulled me aside and asked me very calmly, yet distressed, “did you know about this before, or am I the unlucky one to tell you?” I sort of looked at it a while. I was sinking inside. I knew it ran in the family, but I had no idea it was in me already. The scan said, too many cysts to count. I lied to that doctor, sort of. I said I knew. Didn’t want to bring him down a bit too, y’know.
So with this one you get lots of goodies. Cysts can show up where they damn well please. I have them all over my ovaries, one or two on the liver, and who knows where else by now. The kidneys just keep getting larger and larger, so the other organs get squished about. It does a bunch of other awful things but we’ll skip those for now. This compliments Crohn’s nicely, since things get inflamed and also grow about. If I look a bit chubby for a week, it’s because my organs are fighting for space, now go away and let me eat cookies while I cry.
What have we learned:
Coupled with my spinal injuries from the van incident, along with scoliosis, I’m a back pain masterpiece. Kidney disease hurts. And if there’s a new way for me to sit uncomfortably, I’ll find it. I’m that good.
So the main thing to take from this is: I’m always in a wide variety of pain, all of the time. It doesn’t stop, no matter what. It changes in ferocity but never goes away. It has been this way for a long time, and it won’t stop, either. So when you ask me how I feel, if I say I’m fine, I’m fine. My fine may be a bit different from your definition of fine (my ear only bled ONCE today and I ate a whole sandwich! I AM GOD) but seriously, it’s cool.
Don’t tell me “I’m so sorry.” I don’t like sorry. You didn’t make me sick, why the hell are you saying sorry?! There’s nothing to be sorry for, I’m fine. Do I have bad days and want to shoot the offending areas? Of course. Add to it having no insurance to get help with any of this, and I’m just a pleasant fucker all the time.
But, I don’t care. I still make sure I do what the hell I want to, when I want to. Go out and climb a tree? Damn right. See my friends until 6 am for the fuck of it? Yes please. My body may fight it, but there’s no joy in hiding from life. There are times I don’t want to run about, so I play video games and eat pizza. Nothing wrong with that! Why? I’m not dead. I’m not dead, I should have been a number of times, but I’m not. So I’d say that’s doing pretty damn ok. I’m not sorry for that.
“Oh how awful for you, gosh you’re so brave.” Greatest line of crap slung about. I won’t get better. It’s just how shit is. I’m not “so brave” as people love to throw around at sick people, or people who deal with shit that lots of people deal with. I’m not special, bravery and heroics are for people who do something extraordinary in the face of danger or self destruction. Example: nobody decides to get ill and beat it, they just either do or don’t, depending on how awful it is. I have friends that survived cancer and scoff every time someone calls them brave. It’s not easy, it’s impressive, and it’s a fine show of their strength. But calling me brave because I put up with something I don’t have a choice in is silly. When you’re sick you just do what you have to in order to survive. It’s not brave, it’s normal survival instinct.
There is nothing to feel bad about in being strong. There is also nothing to feel bad about for not being “brave.” I never ran into a burning building to save orphans, I haven’t stood in the face of my mortal enemy and taken a bullet for my comrades. That’s bravery. Survival instinct is a nice primal attribute to have. If you don’t blow your brains out when shit gets bad, good for you! You’re like most people.
We’re all just living, and trying to keep from dying. It’s natural.
You either keep moving with what bullshit you’ve been handed, or you lay down and rot while people pet you with meaningless words. It’s strength of your own will, the strength of your body, the people and doctors around you pushing for more. You’re just surviving. Other people help, as well as their love and affection, but in the end there’s still just you when it’s time for bed and the anxious thoughts creep in as the light goes out. When the fear slips in, how it gets handled is up to you.
Am I happy? Not really. Pain is, well, a pain, and it drags you down. Sometimes I get extremely mad, but that’s just me being a pussy. Everybody gets to be a pussy sometimes! However, I am not UNhappy. I’m alright, nice and middle of the road.
Alright is good enough for me.
So next time you ask, no, I am not feeling well. Just don’t feed me lines about how bad you feel for me. I don’t feel bad for me. I feel bad for those that let these things hold them down, or define themselves by it. So what if I’m sick? Everyone gets sick, feels bad, has a hard life. People die, people get injured. It may not make it seem fair or good, but it happens to us all.
I prefer to empathize with others instead of feel awful for them. A simple, “hey, I understand life sucks, I too am a living creature. Need a hand?” Words of care are more effective if they go beyond “sorry.” Tell someone who is sick you’re there if they need you, and mean it if you do. Bring them a damn cookie or something if you feel bad! Saying sorry is an easy way to think “my job here is done, I felt bad for the unfortunate today!” Give ’em a hug or some shit. Sickness can be isolating, and knowing everyone just pities you for somehow being unhealthy can make it worse.
Treating people like they’re nothing but an illness and deserve to be coddled helps no one. If they literally need to be taken care of because their body gave out, by all means. Don’t abandon someone because they have become infirm! But otherwise, encourage them to do the things they love if they are capable, help keep them from sinking into the easy out: the little depressive hole. If they do fall into it, just talk to them. Reinforcing to someone who feels terrible that everyone else just pities them is helping it continue. Give a depressed person reason to think everything really is that awful solidifies their reasoning. You may not be able to fix anyone, but you can at least not contribute to the problem. Remember that they are still people, and deserve to be treated as such. I get tired of being seen as some sick person, and not me.
I don’t feel sorry for myself. Why should anyone else? I reserve my feelings of pity for hurt animals, small children, and men with small penises. As far as I know my penis is huge.
However, I do like cookies, so that’s pretty ok.