Today, I was treated to what happens when you try to present a different perspective to a group of people who are dead-set on one mindset. (If you were privy to this situation, don’t mention it, please – I’m making this post because what I have to say relates to my condition, and it was brought up by said conversation, not because I wish to continue an argument that is, frankly, unnecessary and unproductive.)
I’m a recent “inductee” to the world of the physically disabled. I’m 29, will be 30 in less than 2 months, so yeah, I’d say I’m a little late on the uptake, here…but I’ll explain later why that’s even relevant.
Due to Lyme and its associated issues, particularly those related to my brain and its nerve-conduction failures because of interference of Lyme bacteria and antibiotics (swelling, basically – they cause swelling), both my speech and my mobility have been affected, not just recently, but for several years.
It’s only recently that it’s been a consistent thing – hence why I say I’m a “recent” inductee.
I have a cane – have had it for a couple of years, and have witnesses to my inability to walk without it at times.
“At times” has turned into “nearly all the time,” and I have acquired a walker, which I’ve had to use on several occasions when not just leg strength, but actual ability to remain upright, have both been compromised. (As an aside, we’re going to put “Lyme”-green streamers on it…if you’re going to be disabled, might as well have a sense of humor, right?)
I’m shopping for a wheelchair, because there’s a very good chance I will have to use it within the next 6 months…all this due to treatment from a tick bite from 16 years ago. My doc has told me he has no idea how long I’ll have to use it.
I spend my nights alternately making jokes about my disability and crying about it. Every night. I cry EVERY NIGHT.
What do I cry about? Let me break it down for you:
- When I first wake up in the mornings, I can’t walk. I’ve tried – doesn’t work. I fall down. Sometimes it’s okay, I just wait a bit and hold onto things, and I eventually make it where I need to go. Other times…well, I haven’t pissed my pants, yet, but I think there’s a countdown to that (seeing as how that’s pretty much the first thing I have to do when I wake up).
- I have the easiest summer job in the world. I deal with surveys from schools, I edit papers, I open envelopes…I can do everything I need to from downstairs, though I do have to deal with stairs on occasion (this is a converted dorm, so it has no elevator that’s accessible by anyone who isn’t administrative or maintenance), and making it to this job has become enough of a problem that I’ve lost over a week’s pay, so far, due to side effects of my meds, which include vomiting, vertigo, not being able to walk, and even that whole foreign-accent thing that happened (you try communicating with Southerners when your mouth can’t decide how to pronounce a word). Not being able to go? How worthless and ridiculous do you think that makes me feel? Simply the act of getting ready to go to work is like a spin class for someone else, some days. It sucks. They’ve been nice about it, which almost makes it worse, because I feel as though I’m letting them down even more for not being able to just get there (bathed, clothed, etc.), 7 minutes away, without even having to drive. I mean…talk about feeling worthless. When I have to get the wheelchair, I won’t even be able to get into the building without assistance (the ramp, inexplicably, has a step at the door…seriously).
- I feel like I’m letting everyone down, frankly, including myself. I shouldn’t be crying all the time, that’s counterproductive! And yet…thinking that makes me cry more. It’s a very frustrating cycle.
- Visiting friends is something I’d very much like to do, but can’t, often due to side effects just coming out of left field.
- Something I’ve been struggling with, in various forms, is the fact that for the past several years, I’ve been slowly turning into a physically disabled person. Like, actually disabled, not just “trouble getting around” or “too fat” (which was the case a few years ago) or “just need some painkillers and it’s all good.” Disabled. Unable to walk. Unable to get to things I need. Unable to function in a society that’s meant for able-bodied people and those with appropriate physical appropriations that allow THEM to be essentially able-bodied, as well. My nerves are failing me. I’m scared of a lot of things, but not much has scared me this much in a long time. I’m scared, but prepared. Hence the wheelchair shopping. But the fact that I have to shop at all? Something I never thought I’d have to do…and I’ve been explicitly told by my doctor that this is something I will need to do.
- I am DEPRESSED. I’m not sleeping, which is adding to it, and that’s due to a combination of meds and pain. I’m in a lot of pain. It’s not going away any time soon, so I’ll have to adjust, but man…the things that people who’ve been disabled their whole lives are used to (or can at least cope with a lot better), I’m just now experiencing in a big way, and I don’t know how to cope. So I cry…and sometimes I wake up crying, because I’ve gotten almost no sleep, and I know the rest of my day is going to be just that much harder because I haven’t been able to re-fill my spoons.
- PEOPLE THINK I’M FAKING. I’m serious – as recently as TODAY, I got someone telling me that I needed to stop trying to garner sympathy for my “fake” disease. ?!?!? They also alluded to the fact that I’ve been getting donations, and suggested that that was the reason I was faking. I have news for y’all – I could fake something more “glamorous” and trendy than Lyme disease, and I could do it easily (I’m a med geek, after all…and maybe that’s why people think I’m faking, but until a few years ago, Lyme disease was a campfire tale, to me). The fact that people are donating is on THEM, not me. I asked for help once, and people took up the cause and are now running with it. I did NOT puppet-master this effort, and I am NOT faking being sick. Wanna see my papers? I have proof. I have more proof than most people have to provide to be treated for cancer.
- That’s another thing that makes me cry, and it’s the only one that makes me cry in a good way: people care enough to donate, call, email, send gifts (Thank you, St. Grendel! One of those items was needed, and the other gave me a good laugh, which was much appreciated!), and did I mention CALL? People from the internet are calling me and wishing me well. WTF. That’s not supposed to happen. We’re supposed to only communicate in typing and occasionally come out of hiding to greet each other in-between shooting things. Being worth a phone call in this day and age means a lot – it means someone wants to talk to you right now. Someone wants to talk to me? Someone wants to donate and help me with bills? Someone wants to give me something? I seriously can’t handle that, emotionally. It’s appreciated, but it’s so much that my cup runneth over, and leaks out my eyes. I even got a new computer tower because a group that watches me game wants me to game more. I mean…WHAT?
- My disease is one that’s not even recognized as valid by the only organization that matters when it comes to me getting the help I really need: the CDC. I admit to being a drama queen about some things, but I wouldn’t go so far to pretend I had something that was, at best, curable immediately, and at worst, only curable by sticking an IV directly into your heart (which, yes, I will have to figure out how to pay for out of pocket when it comes up, and it’s as expensive as chemotherapy). You can’t even officially cure Lyme – you can just put it in remission. Like cancer. But since it’s bacterial, people assume a few antibiotics will have me back on my feet (literally and figuratively) in no time. Um, that’s not quite how it works, but thanks for your destructive optimism?
- The loudest Lymies (folks with Lyme disease) are like the loudest Tea Party affiliates: fucking nuts. I hate being associated with a group that thinks that acupuncture and a special blend of herbs and spices given at a snake-oil clinic (*cough*Sponaugle*cough*) will cure you for the low, low price of $16,000 and a 6-week stay at a place that won’t even tell you the medications they’re giving you (but they’re supplements, which are not FDA-regulated, so it’s allegedly legal, though you won’t find me taking anything given to me without knowing EXACTLY what I’m taking). I mean, holy shit, people, it’s BACTERIAL. Anti-biotic treatment is literally the ONLY way to kill these things before they kill you and die out due to lack of a live host! There are also loud, crazy people who keep saying that Lyme causes HIV, and that everyone who gets vaccinated has syphilis, etc., and these are the ones who WON’T. STOP. ARGUING. They’re so rooted in their crazy (which could very well be medical – Lyme DOES infect the brain, as I’ve unfortunately discovered) that they fixate, and they’re the ones the public sees/hears. Well, nuts to that. That’s why I’m doing my Lyme journal (promise, entries coming up), but in the meantime, these fuckers are making me look crazy right alongside them, and that scares me, because the future of the treatment of chronic Lyme is at a precipice, and THESE are the people with the most “cause” in their minds to write to their reps and present their “research” (usually a bunch of links that are very loosely related to something that might have something to do with Lyme, maybe, in that they’re all about diseases of some sort or another). That scares the ever-loving piss out of me, in the same way it scares me when I find a tick on myself, these days. AGH GET IT AWAY!
- There is a small, but very real chance that I will die from this treatment, if my body can’t handle the herxing (kidney or liver failure, or an actual stroke). I am making a will. You don’t know agony until you’ve had to figure out power-of-attorney and what to do if something gets fully screwed and you have to make the DNR decision…as well as who you give that power to…when you’re SUPPOSED to not die, but there’s a chance, and you have to face your own potential mortality. This is the least of my worries, but it’s still a worry.
My malady may be temporary, and I may be old enough that I can explain it to people, have them understand, and know why I can’t do some things. However knowing this doesn’t make it hurt any less…especially when your illness is called into question by someone, or your understanding of something is called “rabble” when you try to verbalize it.
So please understand – I AM PHYSICALLY HANDICAPPED BECAUSE OF A DISEASE. Right now. For the time being.
Don’t treat me as though I don’t know what it’s all about, what the frustrations are, etc. I’m experiencing them right now. And, for the record, no, I’m not comparing myself to those who have been disabled their whole lives as a matter of course – what I’m saying is that the things that have been said to me regarding my new handicap have been on-par with some of the things I’m sure were said to the disabled folks in question, from their past.
The CDC doesn’t recognize my disability. That’s a fight we’re working on. Don’t make me have to fight you all, too. Please respect that what’s happening to me is happening, that I AM sick, and that I would give anything to not be…just as many of you felt as children, or even adults, if things came on late as they have for me. This may not last forever, but until it goes away? I think I deserve some damned respect, as I’m having organs removed due to this stupid tick bite that I barely remember.
(Also, if anyone has a spare manually-operated wheelchair, let me know. I’m serious.)