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A note on disabilities, and an admission.

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.)

30 comments to A note on disabilities, and an admission.

  • There, but for the grace of God, go I.
    There is more than enough insensitivity to go around in the world. Health crises come to everyone sooner or later, and to varying degrees. I’ve met you and I know how you embrace the joy and energy of the moment, when possible, and I know you well enough to recognize that is your natural state. Lyme has robbed you of that good feeling and at the time of life you should feel most hale and hardy. I hope your disease is soon (and permanently) put into remission. In the meantime, I hope you are heartened by those who care for you and who try to empathize with you for all the challenges you are facing.

    • I never knew what to say to you during your jaw “adventure” because it looked so damned painful, and saying, “That looks like it hurts…but it’ll be over, soon!” seems insensitive, somehow, to someone whose mouth is essentially wired shut. Your responses to my situation are much more graceful – can you teach me to be that eloquent? Heh.

      I appreciate what you’ve done for me (all you’ve done), and your support, and as I’d met nearly everyone in the group who called me the other night, I KNOW there are people who have my back in this. AD interrupted a story to say hi to me…that’s a big deal…lol.

      And that’s the other thing I didn’t list, because it seems silly…that at my age, I should still be able to go to concerts when I want to, go to the store when I need to, and not have to wait for rides everywhere on days when I’m feeling a little dizzy, not have to have my boyfriend drive me to, and my dad drive me home, from work. The fact that people are willing to drive me places is both helpful and a bit humiliating. I expected to be like this…”When I am an old woman, I shall wear purple, with a red hat that doesn’t go and doesn’t suit me…” not when I’m coming up on my 30th birthday. And I feel selfish feeling robbed, as you say, of my freedom at this age, BECAUSE there are people who’ve gone longer, and will go the rest of their lives, having to depend on the kindness (or duty) of others, when mine should (*pray pray pray pray*) be temporary.

      On the other hand, those people who are used to it should be a little more sensitive to the fact that I have no fucking clue what I’m doing, and stepping on (or rolling over, as the case may be) toes is something that’s going to happen until I get used to this whole situation.

      “Now faith is the substance of things hoped for, the evidence of things not seen.” – Heb 11:1 I’m Agnostic, but since my divorce, I’ve been keeping that one in my back pocket. It IS comforting, as is the support of everyone. So thanks.

  • Those of us who know you have your back, Squeaky.

    And those of us who know who called you a faker are sharping our knives.

    • Oh, the person you’re thinking of didn’t call me a faker – I never said so, and unless they do, I never will say so. That was someone in “the other community” (someone pissed that I got a computer from friends) – via Skype message. Needless to say, I took care of them, and their name is now Mudd.

      And thanks. Those of us who know YOU have got your back too, ya know.

  • I’ve been disabled since I was 12. Did use a wheelchair in the hospital, and in later years after a motor vehicle accident while hospitalized. Crutches, leg brace, body casts, all unpopular memories.
    Having one leg 3 inches shorter than the other and fused at the hip is no fun.
    But, I’ve learned to live with it.
    AND, there have been some accidents, both falling and urinary. Not fun or dignified.
    But, I’m still here – fighting.
    And you are too.

    Hang in there-Got your back, Jane!
    gfa

    • Thank you. I’m so sorry you’ve gone through so much.

      • I shared not for sympathy, but for commonality.
        We all have our crosses to bear – some more than others…

        :-)

        • That doesn’t mean I’m not going to show sympathy, but I appreciate the commonality – the support – even though what you’ve been through is much worse than what I’m going through, and what I *should* go through in the next couple of years. I have perspective, you know…I’m just a bit upset right now because that perspective is being…shifted. Does that make sense?

  • Keep your head down and keep pulling.

  • Geriatric Cat Wrangler

    i’ve got this transport chair that tom gave me. it doesn’t have any foot rests and being a transport chair you’d have to be pushed in it, but you cn have it if you want.

    does your insurance cover renting a regular wheelchair?

    • I need foot rests (when my legs don’t work, my ankles go slack), and I need to be able to push myself around, at times, because I won’t always have someone with me.

      My insurance has raised the price on my regular prescriptions just because I won’t do mail order. I doubt they’ll cover renting a wheelchair. I have to call them about some lab bills I’ve gotten (which are supposed to be covered, kthxbai, or at least I’m only supposed to pay 10%), so I’ll ask, but I have a feeling they’ll be like, “What?”

  • let me check the shed to see if I still have my old wheelchair. I thought we donated a bunch of stuff, but I don’t know if we donated the old one. It has no feet rest but other than that it is a regular wheel chair. If I have it the problem will be shipping it from down corpus way to you in memphis. It might be cheaper to buy a used one up there than shipping a wheel chair from down here. Check with the medical supply houses local to you, I got my old wheelchair for $60.00 because it didn’t have foot rests and was a little beat up.

    • There is a “bionic limb” place literally right around the corner, and I figure they have to sell wheelchairs for people while they’re waiting for their prosthetics to be finished. When my legs decide they don’t want to work, my ankles go slack, so I’ll need footrests, but I appreciate the offer. We’re keeping an eye out on Craigslist (quite a few for reasonable prices…they just don’t show photos, which makes me feel a little squicky about them, but we can clean pretty much anything if all the parts are there). We have quite a few medical colleges, as well, and I’m going to find out where they get their stuff.

      If I am not able to find one, though, hell…I can make footrests out of “Lyme” green duct tape and just wind it around and between the two bracers, so if you find it, keep it handy. Thank you.

  • FarmGirl

    Squeaky, if you’re looking for just flat ass functionality, at an affordable price, check Harbor Freight. Mom got a rolling walker from there when she got her knee replaced and it stood up well enough to serve her, then Mamaw, and then be given to a friend of ours with MG. I know they have transport chairs and wheel chairs as well. It won’t be fancy but it will get the job done without breaking the bank.

    I don’t know if it would work for you or not or what you have now but Mom loved the rolling walker she got, it was one of the granny lady mall-walker ones, with a little seat. Early on after the knee replacement when she was dealig with a lot of the same stuff you describe it let her do a lot of things she couldn’t otherwise, just because she had the chance to stop and sit for a couple minutes when she started to get tired, instead of having to push on to somewhere there was a seat and completely exhaust herself. Plus, under the seat was a little basket so she didn’t have to try and juggle four thigs when she should be concentrating on one.

    Just thought I’d share, in case it had a chance to make things a little easier and a little better for you.

    • I have one of those huge, bulky walkers, with wheels on the front, that folds in on itself for storage (hence why I usually end up using my cane in a way it’s not supposed to be used – for a $15 cane, I’m shocked it hasn’t just folded in on itself, yet). We got it on loan from my boyfriend’s boss, but sometimes it takes more energy to move it than I have – so yes, I appreciate the tip, I will definitely check that out. Thank you!

      I mean, hell, if I’m going to have a walker, it needs to suit me, and if I buy one, I can spray-paint it lime-green and put racing stripes on it…heh.

    • THEY HAVE A WHEELCHAIR, TOO. Hot damn! I thought they were just a hardware store!

      • FarmGirl

        I told you! They don’t tend to sell the really high end stuff but the transport chair and the walker we’ve gotten from them have held up to what we’ve needed. And they’re really reasonably priced. The wheeled walker has brakes on the handles, like bike brakes, so you CAN keep it from moving if you need to, it just takes a little getting used to.

        Like I said, one of mom’s favorite things (and Mamaw’s too) about that walker was the ability to stop and sit down a minute when she STARTED getting tired. I dunno about you but that made a huge difference for her on how much she was able to do in a day, since she could generally manage NOT to utterly exhaust herself with the first thing she did, by taking it in shorter bursts, and being able to say “nope fuck it, I’m sitting down right here for a minute.” Sometimes realizing she was getting worn out in the kitchen, then going back to her chair in the dining room, about ten feet away, just wiped her out for hours. It sounds to me like you’ve got something similar going on so MAYBE having that handy seat will help at least some.

        As far as color, mom’s was a red, I think they had blue as well when we got it but it was a few years ago, but spraypaint is cheap. Also the model we had didn’t take too much to fold down to go in the back seat of a car or in the trunk/back of the pickup.. had to take the little metal basket out from under the seat but mom generally had her wallet etc in there anyway, sort of like a purse she didn’t have to actually CARRY.

        Also, I apologize for the spelling in the previous comment… I was typing on my phone, while checking internet stuff right after waking up, during the first cup of caffeination. Clearly that’s a bad combo….

        • The walker is honestly kind of pricey for us, but the wheelchair is a GREAT deal (it’s like, $112 right now, and I would just need to get a seat pad).

          And yeah…spray paint is cheap. I intend to utilize it liberally. :-)

      • Geriatric Cat Wrangler

        harbor freight has a lot of unusual stuff you can’t get other places. :)

  • Oh, I meant to add this earlier: Don’t think of it as a wheelchair, think of it as a mobile weapons platform.

    I’m sure we can make it look festive with supersoakers and Nerf guns and the like. :)

  • Rick

    Wish I’d known you were needing a walker, I’d have been more than happy to bring you mine. (It’s pretty low mileage you know.)

    Just because you’re not hearing from me doesn’t mean I’m not thinking/worrying about you. Annd of course if you run short of errand boys/minions I’m still here…

    • Well, Forrest got one from his boss, but it’s kind of…big and unwieldy. Do you have a photo of yours you can email to me?

      And I appreciate your offers…should I need help, you’re in my cell phone, and I am not afraid to ask. :-)

  • Dennis

    Please do not insult us crazies, the world sucks as is. :)

    I am socked to hear your situation I never new Lime Disease could turn out so bad, my normal attitude about was and is so what when it comes to Lime Disease. Now I am going to have to think twice. Try to keep a positive attitude and we will see you on the other side of this thing, with shotguns at the ready.

    I do not know what else to say to cheer you up but think about Pink Elephants on Parade.

    Denis

    • I mean the folks who, when presented with evidence that contradicts their beliefs about something REALLY important, stick their fingers in their ears and go, “LA LA LA LA LA I’M RIGHT SHUT UP LA LA LA LA LA.” Hell, I’d describe myself as crazy – but I’m not ignorant. Ignorance + crazy = dangerous.

      Yeah, Lyme isn’t well understood…it’s one of those things that people don’t really talk about, and when they do, it’s usually in extremes, with government organizations saying it’s nothing, and Lyme-centered organizations saying, “A pandemic is ‘nothing’? Seriously?”

      I appreciate the comment – I’m trying to stay positive, for sure. Don’t have much choice, to be honest. :-)

      When I’m off my meds and can start drinking again, I will make my own Pink Elephant Parade with the help of my good friend, Moscato. Nom.