A Crippled Carnival

"My Own Disablism" Or "The Self-Hating Crip"

2010-05-01T12:34:00.000-07:00

I don't know who or what I am anymore, but I feel like a traitor.

No one reads this blog, so I'll recap some events. In November, I got arthroscopic surgery on my left knee because I could no longer stand the constant pain I was in and it was hoped that the surgery would alleviate some of that pain. The fact that the surgery would possibly allow me to walk without a cane for the first time since 2001 almost didn't matter. The success rate was low, but the pain was terrible and I had to risk it.

The surgery worked. Mostly. I should be off the cane by the end of the summer. The doctor says I'll still have to carry a folding cane in my bag, "probably forever" "just in case", but if I hadn't gotten the surgery I'd have been an almost full-time wheelchair user within a year or two.

The pain, however, has improved, but is not gone. Not by a long shot.

I said, often, that if I was just on the cane but did not hurt, I would never have even considered the surgery. And now, after I got it - I'm getting off the cane, but I still hurt. Add to that all my other health issues, most importantly my mental illnesses, and I have gone from visibly disabled to invisibly disabled.

Before the surgery I was afraid that if I could walk normally I'd lose my identity. If I was no longer disabled, I'd cease to be me. I knew that was wrong on many levels, mainly being my disabilities do not define me, but also that even after I'm no longer visibly disabled I'll still be invisibly disabled.

I've always considered other invisibly disabled people to be disabled, so why am I having such a hard time wrapping my head around my mental illnesses, health problems and nerve damage counting?

Not only that, but I feel like I've betrayed the disabled community. When I next see wheelchair-using acquaintances in situations where I would have previously needed to use my wheelchair (like at a comic book convention for example), what will I say? I've formed bonds of solidarity spending nearly a decade being a fairly militant crip. Now I've gone all walky.

I didn't mean to be a traitor to the cause, I just wanted to not hurt all the time. And I couldn't even get that. I feel like I betrayed you all, and for what?

I'm going to keep fighting as I always have, but I don't know what good it will do anymore. When I continue to fight for curb cuts and increased handicapped parking as a person with no mobility issues, I imagine I'll have a hard time being taken seriously.

I don't know why I feel this way. Everyone I know tells me I'm being ridiculous, but they're all able-bodied and mentally-well. This is the first time I've said this to anyone in the disabled community.

So, this is my confession. I'm a disablist, I'm a self-hating crip. Or am I about to lose the right to use that word?

Right now my bipolar is Slightly Depressed.

Right now my pain level is 6.5.

By the way, if you're interested, you can check out my other writing at my geek news website, The Nerd Signal.

Oh yea, I have a disability blog

2010-04-24T08:22:00.000-07:00

I know I haven't updated this blog in forever, but I've been really busy with my other writing. I said last time I was considering writing more, I didn't intend to neglect this in the process

Anyway, an update.

My knee is healing amazingly well. I saw the orthopedic surgeon last week, and he was blown away by how well I'm doing. He figures I only need another six weeks of physical therapy, and I should be off the cane completely. My insurance company, however, is of the opinion that I'm done with physical therapy now, and that I get no more visits. Not because they think I'm already better, but because they think I'm not getting better fast enough. So, yea.

What I'm apparently going to have to do, since I might not be able to go to PT anymore, is do even more at-home exercises. I don't really want to start walking around the block, but it looks like I'm going to have to.

At any rate, I'm getting around my apartment without my cane pretty much all the time now, and I've started trying to walk around outside just carrying it. This is something I haven't been able to do since 2001. I still hurt, but much less than before.

My psychiatrist lowered my neurontin to try to help with the constant high side effect I mentioned in my last update. It helped a little bit, but not much. However, the nerve pain came back, but not as bad as it was before. Awesome.

Still having mood swings. As usual, I tend to manic. No change in my OCD, either. But I never expect either of those to change.

Right now my bipolar is Slightly Depressed.

Right now my pain level is 5.

A Long Delayed Updated

2010-01-13T17:39:00.000-08:00

Shit, it's been just over two months since my last post. That's not good. I'll take this update in steps, I guess.

1) My Knee Surgery Recovery - I have physical therapy three times a week, and well, it's physical therapy so it sucks. I had an appointment with my orthopedic surgeon on December 11, and he said that I was healing exactly on track. I've been off the crutches for while now and back walking on a cane. My range of motion and stability are improving dramatically, and my weight-bearing has been catching up in recent days (one of my exercises has me standing on one leg for three minutes, and while still quite painful it's getting easier). It looks like I'll probably be getting off the cane in the next few months, and though I don't want to jinx it I have a feeling it might actually be weeks.

However, as I mentioned in previous posts, the only reason I got the surgery was to alleviate the constant pain I was in, walking-without-a-cane was not only not the priority, but racked me with guilt that I'm still feeling. And on a less positive note than what I mentioned above, my nerve pain does not seem to be going away. I am still in a shit-ton of pain all the time. So it looks like I'll likely be walking but in constant pain. Awesome.

My ortho had me talk to my psychiatrist to have her up my neurontin to treat the nerve pain from the CRPS. Since about a week ago, I've been taking two 600 mg tabs in the morning and one at night (I was taking a half a tab at night until Sunday). I was taking two 300 mg caps in the morning and one at night before, to treat my bipolar and OCD. I am not handling this new dosage well at all. I'm dizzy and light-headed all the time, similar to my vertigo spells but not really the same at all. I've basically been high the entire time. Crazymeds says this is normal at higher doses, though, so it's not just me. The question is whether I cut back to a lower dose and try something else for the nerve pain, or keep going and keep looking like a burnout.

He also prescribed lidocaine patches for my knee to help with the nerve pain, but my insurance company doesn't seem to think that the patches are appropriate for my injuries. So I guess I won't be getting those.

I see the ortho again on the 22nd, so I'll know more then. I did call him about the neurontin to get his opinion, but haven't gotten a call back yet.

2) My Mental State - I've been all over the place lately. I've been having all kinds of mood swings. Really severe ones. They've been manic phases, mostly, with a few really bad depressive phases thrown in there for variety. Last week, my bipolar hit me with an especially terrible depressive phase. Of course, it swung back hard into the manic phase that I'm currently in.

3) My Social Security Case - Ok, here's the big news. I talked to a lawyer yesterday. She told me the same thing that my last lawyer told me, though in a much less douchey way. My wife makes makes too much money for me to be eligible for SSI and I've been out of work for too long to be eligible for SSDI. So, while yes, I am probably disabled enough to win, there's nothing for me to win. I've been mathematically eliminated from Social Security Disability. Oh, Math. I thought we were friends.

The advice the lawyer gave me was that when I get the letter with my hearing date, to send it back, saying that I rescind my application and request for hearing. This isn't necessarily the bad news it seems. The way I see it, while yes, I while never get a monthly Social Security check or that hefty lump sum payment, I will also never have explain to a judge how awful my life is or have to justify having hobbies or going out with friends. (Seriously. One judge actually asked me to explain how, if I'm so bad, am I able to have friends and how am I able to do things like go out to eat or go to the movies with them.) This is a massive weight off my shoulders that I can't even begin to describe.

She told me that County Assistance can not take away my health insurance, even though they keep threatening to. But since I get insurance through them because I'm permanently disabled, they can't ever take it away. Ever. This is actually awesome, unlike the sarcastic awesome I usually end paragraphs with.

The lawyer also gave me some information about a program called OVR, which is a vocational training program only for disabled people. It's low-cost and they'll teach you to do pretty much any job you want to learn how to do (provided you pass the aptitude test for it). They even help with job placement. I'm not entirely sure if this will help in my case, because as I've said before, I have at least one, usually two, doctors appointments a week, and most employers won't let you call out crying. But I'm thinking I might go and check out a possible career in writing (as I have some experience outside this not-updated-enough blog).

So, yea, that's where thing's are right now. My leg's healing, but the nerves don't seem do be. My meds are fucking me all up. My bipolar has me all over the place. And my Social Security case is over and I'm alright with that.

Right now my bipolar is Manic.

Right now my pain level is 6.

A "Step" Backward

2009-11-11T10:24:00.000-08:00

By yesterday evening, I had gotten my pain down to relatively manageable 7 or so. Then, last night while doing my exercises - straight leg lifts, the most unpleasant of them to be precise - my leg suffered some sort of catastrophic failure. At first, it simply stopped responding to my commands, in that when I attempted the third set of lifts my leg just would not go up no matter how hard I tried. Or in fact, do anything at all that I tried to get it to do. Eventually, I painfully managed to force my leg up and did the rest of the lifts. By the end, however, I was in so much pain that it felt like my leg had burst (like that runner's muscles in The Animatrix). Even after taking an extra percocet, the pain did not subside. Even today, over 12 hours later, and after taking a vicodin, the pain has not subsided.

I should not have pushed myself, and tried that last rep.

In other news, I got a letter from my lawyer. Well, I say "my lawyer." It appears that their office no longer believes my case is winnable, not because I have a bad case - no, in fact, they think my case is quite good - but because of the other logistic aspects. My wife makes too much money, and I've been out of work so long that I have no more credits built up. So it looks like I need to find a new lawyer. Again.

Awesome.

Right now my bipolar is Oddly Level, considering.

Right now my pain level is 8.5.

One Week Later

2009-11-10T06:51:00.000-08:00

It's been a week since the surgery, can you believe it? Time really flies when you're in excruciating pain.

Last Tuesday, I had to be at the hospital at 6:45 AM. My awesome father-in-law, with my equally-awesome sister-in-law in tow, drove me and stayed the whole day (really, I can't say enough great things about him). I wasn't in the waiting room for all that long before they called me into the back to start getting ready. They, as expected, made me put on a gown, asked me a bunch of questions (the same ones repeatedly), and put in an IV. After saying goodbye to my wife and her dad and sister it was time to go in.

I was told the procedure took about an hour and a half. But it took me two hours after that to wake up from the anesthesia. During that time, the doctor came out and showed my wife pictures of the inside of my knee and explained to her what he did, but given the stress of the day, not exactly taking much away from it other than "it was gross" it perfectly understandable. When I finally woke up (and stopped worrying my wife, who was convinced that I wasn't going to), they gave me the aftercare papers and started to send me on my way. It was at this point that I had to remind the nurses that the doctor had told me that I would have to wear some kind of full-leg brace after the surgery. They said I didn't. I said I did. They called the doctor, who told them that, yes, I did have to wear an immobilizer. Apparently, since I said "brace" that was the problem. Idiots.

So, I've been spending the last week recuperating. I'm doing my very painful exercises religiously (two that have to be done hourly, one that has to be done three times a day), but mostly just sitting in my lazyboy, playing Xbox, and taking copious amounts of very strong pain killers. I'm using crutches to get around the apartment, and can't put any weight at all on my left leg. However, the pain is getting better, and the swelling has gone down a lot. The range of motion is starting to come back though, slowly.

There's more to tell, I think, but I believe I've about reached the amount of time I can spend away from the lazyboy for right now. Another update soon.

Right now my bipolar is Surprisingly Level (though it's been Kinda Depressed or worse for days).

Right now my pain level is 8.75 (now let's get some pain killers in me).

One More Day

2009-11-02T08:04:00.000-08:00

So, my surgery is tomorrow. And I'm nervous as hell.

I really, honestly, don't care about getting off the cane. Seriously, that doesn't matter to me. It isn't the issue. If I had instability problems or was in a wheelchair but had no pain, I wouldn't even consider surgery for a second. I just don't want to hurt anymore. But what if the surgery doesn't take? What if I come out worse than when I went in? Then I'll be in even more pain than I'm in now. I'll have to take more and stronger pain killers. As it stands I already feel like an addict sometimes. And I'm sure I look like one to a lot of people.

In other news, I saw my lawyer last week. He told me that my wife makes too much money for me to get SSI and I've been out of work so long that that it might be hard to get SSDI. He said that I have a very good case, with all that was already in my file plus the recent addition of the seizures (or migraines or whatever) and the vertigo. Though it might not matter. I could win and still not get any money. If it looks like that will be what happens, then my lawyer won't handle my case and I don't have a lawyer anymore.

But they still faxed over the paperwork for the continuance for me. I got a call from Social Security this morning saying that I didn't get approved for it. I explained to the woman on the phone that I have surgery only days before, and that I'd be coming to the hearing in a wheelchair, in leg brace, on heavy pain killers. I explained that I was told this wasn't really my hearing, but that thing where they show you the video and explain the hearing process and tell you to get a lawyer. Since this is my third time going through this, I asked if I really even needed to go. Of course, she said yes. She did say she'd talk to the judge and try to postpone it. I told her that if she couldn't, I'd still come, though I didn't know how lucid I'd be.

On the other hand, the day I went to see the lawyer, someone actually offered me their seat on the bus. So there's that.

Right now my bipolar is Surprisingly Level.

Right now my pain level is 6.5.

Hurry Up And Wait

2009-10-20T10:43:00.000-07:00

On Friday, I got a letter from Social Security. The date of my hearing is November 6. Three days after my knee surgery. Like I've said in another forum, I honestly can't tell which is the more fun prospect - Having to show up for the hearing in the wheelchair because I just got the surgery, trying to argue that despite the surgery I'm still disabled because my mental illnesses are the reason I'm here anyway, or trying to do all this on heavy painkillers.

Though it turns out this conundrum is more a philosophical debate, as my wife suggested that I push back the hearing because of the surgery, and my lawyer said there is no way I'm going to court that day. Both because of the surgery and so he can work on the case.

So, I've been waiting since (I want to say I got the letter saying I was on the docket in...February? Really, February? Ok) February for my hearing date, and now that I finally have one I'm going to ask to shuffled to the bottom the list again. At this rate I'm never getting Social Security.

Right now my bipolar is Slightly Depressive.
Right now my pain level is 6.

Surgery And Fears That No One Will Understand

2009-10-12T11:56:00.000-07:00

My knee surgery is three weeks from tomorrow. And Jesus Christ I'm conflicted about it. On one hand , I can't wait. Especially on days like today, when I'm in excruciating pain, when I'm at least a 7.5 on the pain scale even through the vicodin. On the other, I have feelings about the surgery that are very hard to explain, but I'm going to try in this post.

In August of 2001 my life changed. I became physically disabled. I'd been mentally disabled for some years before and to some extant I guess I was physically disabled, too. My heart problems, my asthma, etc - invisible disabilities. My point is, I became seriously and visibly disabled. My ability to walk was, I was told at the time, irreparably impaired. And I've discovered in my time in the Disabled Community that there is a world of difference between those with visible disabilities and those with invisible ones. But more on that later.

In the past eight years I've become fairly active in the Disabled Community. I fight for Disabled rights whenever and wherever I can. In fact, I've become pretty militant about it. I am a Disabled Person. And I'm proud. But I'm getting surgery in three weeks that if all goes well will end my reliance of canes and wheelchairs. Why? So I don't hurt all the time.

I just want to not hurt anymore. Is that so wrong? Why do feel like some sort of Cripple Uncle Tom? It's not fair that I feel this way. I feel like I'm betraying everything I stand for. Well lean for and sit for. There's no reason anyone should have to feel guilty for not wanting to feel pain, and yet I do.

And then there's the identity issue. If I'm not the guy on the cane, who am I? I've been the cripple so long, if I'm not I don't think I'll know who I am anymore. I've tried to explain this fear to friends and family, even my therapist, and no one knows what I mean. They all think I'm being ridiculous. But this really bothers me. Sometimes it keeps me up at night.

And there's the reactions from the Disabled Community. I feel like like I'll be shunned. Yes, I'll still be disabled, I'll still be mentally ill and I'll still have tons of other medical issues, but I won't be visibly disabled anymore. And a great many visibly disabled people look down on invisibly disabled people. They're like the light-skinned of the community. They can "pass." As a friend of mine put it when I was talking to her about my fears regarding the surgery, the invisibly disabled are kind of like bisexuals. They don't fit with either group. Just as bisexuals aren't really gay or straight, the invisibly disabled aren't crippled, but certainly aren't not crippled either. I'm not looking forward to explaining to people that "Yes, I am disabled. I'm mentally ill." Having the visual shorthand of a cane is much easier.

The worst part is the surgery might not even work. There's a 25-33% chance that I'll end up worse than I was when I went in. That I'll have less ability to walk and more pain. I'll be using a wheelchair almost full-time. But these things have already been getting worse. If I don't get the surgery, I'll be using a wheelchair almost full-time in a year anyway. So there;s no reason not to take the chance. I have to try. I need to try. I want to not hurt. Even if it means I might end up hurting more.

But if it works, I hope the other crips forgive me. And I hope I forgive myself.

Right now my bipolar is Kinda Level.
Right now my pain level is at least 7. 5 through vicodin.

Two Ends Of The Spectrum

2009-09-04T12:09:00.000-07:00

Last month I went on vacation with my wife and her family. We went to Myrtle Beach, in South Carolina, in August. It was upwards of 90 degrees with upwards of 95% humidity every day. My knee was not happy about this. I spent the entire vacation in excrutiating pain despite being heavily medicated. I also spent a whole lot of time using my wheelchair.

Here's the crazy part, Myrtle Beach might be the least disablist place I've ever been. Almost everything was accessible, and the people (both locals and tourists) were ridiculously helpful. They held doors for me and blocked traffic so I could cross the street. Store employees went above and beyond in their efforts to help me. And this happened everywhere we went. It was amazing. Now, granted I didn't use the public transportation down there, but if it's a viable option for getting around then Myrtle Beach might be some sort of cripple Shangri-La.

On the other hand, this happened the other day. At a town hall meeting for the health care reform bill, a woman in a wheelchair was shouted down and heckled by opponents of the bill. When she said she was afraid she might lose her house because of medical bills (not because she took on a mortgage she couldn't afford), a man shouted "Good! Lose your house!" One person (though I use term only technically) whose voice stood out among the crowd, when asked later why he heckled her, said "I don't know how a handicapped woman in a chair has more rights than I do."

You asshole, much like the argument for gay marriage, it's not about more rights, it's about the same rights. And to be perfectly honest, since I already get government-run health insurance, I want everybody to have the same rights I have. And clearly, listening to his tone, his problem with her rights (and by extension, mine, and possibly yours - if you're disabled) isn't that she has more than he does, it's that she doesn't have less.

Semi-related, it amazes me how many people with Medicare are protesting the idea of government-run health insurance. If you're not willing to put your money where your mouth is and voluntarily remove yourself from The System, then shut the fuck up.

Now, on to the updates on my health. The dizziness and headaches I mentioned last time have an explanation. Well, three really. My Ear, Nose and Throat Doctor says it's vertigo. BPPV to be specific, but I'll find out more when I get a balance test on the 16th. My Cardiologist says it's likely vertigo, but it might also be the insane number of meds I take or it could be my blood pressure has gotten too low. So he took me off my heart medicine, which should help with both of his theories. I have to go back in six weeks to follow up and if my blood pressure has gone up too much he's putting me right back on it.

I also had an appointment with my Orthopedic Surgeon today. I'm getting the knee surgery. I'm just waiting for a call back with the date. I have a post about that planned, but I'm going to wait until I have the date.

Oh, and I had a kidney stone last weekend. The pain was unbelievable. Which is impressive, considering how much pain I'm in all the time. For it to stand out as especially painful really is saying something.

Right now my bipolar is Kinda Level.
Right now my pain level is 7.

Ugh.

2009-07-26T10:34:00.000-07:00

Sorry it's been so long since my last post, I really didn't intend for this to be a monthly blog. I really do need to update this more often, especially as I have had things to talk about but just haven't.

I'll start off this update with The Big Issue right now, certain aspects of my health situation have been getting a bit worse lately.

My knee pain has gotten worse, and it's been going out on me completely more often. I find myself having to take my vicodin more frequently. Whereas before I was taking it once a day or maybe every other day, lately I've been taking it at least once a day, often more. And this is after my doctor upped the dosage a few months ago. I've been having a harder time walking and standing, and getting up from chairs for that matter, since my knee seems even less inclined to support my weight than usual.

Also, there seems to be something wrong with my head. Well, something else wrong with it. I've been getting awful headaches and dizzy spells. Really terrible ones. I feel like I'm falling over, usually to the right, and I can't help but try to hold myself up. This happens when I'm standing, sitting or lying down. It's led to me falling into walls and things, though thankfully I haven't hit the ground yet. Even though I just saw her, I have an appointment to see my neurologist again in a few weeks, as my primary doctor was stumped by the problem.

On a probably-related note, I've been sleeping much more than usual. I've been, both, taking more naps and waking up later. Generally, no matter what time I fall asleep, I wake up at about 8:00. On my own, no alarm, everyday. Recently, though, this has not been the case. If I want to get up before like 11 I have to set an alarm. Hell, the other day I slept til 2. This never happens. Something is very wrong.

Both my psychiatrist and my neurologist have upped meds for me recently. My psychiatrist increased my neurontin, and my neurologist increased my topamax. This did not surprise me, as both of these doctors raise these meds every time I see them.

My neurologist also wants me to get an EMG test. She wants to figure out why my hands go numb so often and why I get tremors. I've heard nothing good about the test, only that it's very unpleasant. Oh, and it's the day after I get back from vacation, so yay.

I have no news on my Social Security case or my knee surgery. The knee surgery because we don't know when to schedule it yet, the Social Security case because, well, it's Social Security and there's no knowing when they'll contact you.

Right now my bipolar is Kinda Level.
Right now my pain level is 6 (And I can already feel it getting worse).

A Much Overdue Update

2009-06-15T17:55:00.000-07:00

First, to catch up on the situation with my insurance and my County Assistance caseworker. When last we spoke, I was told that if I sent in my paperwork again on May 18 there would be no problem. We faxed it all over again on the 18th as instructed, then called every day to see if she had received it. She finally called my wife again on the 21st, and said that just got it and I'd get a letter in 7-10 days telling me if I still had insurance. Keep in mind my insurance was due to run out on the 24th. I called her back several times that day, and never got through. I also left some very rude messages that in retrospect I probably should not have left. Though to be fair, I had done everything I was supposed to do, and there is no reason for me to be penalized for the inefficiency of their office.

So the next day, since I never got to speak to my caseworker, I went down to visit after my appointment with my orthopedic surgeon (more on that in a minute). When I got there I spoke to a Very Nice Girl at the front desk who could not figure out at all why there was a problem with my account. My caseworker, however, was not there. Very Nice Girl told me to wait while she found out what was going on. She eventually got back to me and told me that was all handled and I had nothing to worry about. I never saw my caseworker.

I never heard anything back from Septa.

As I said earlier, I had an appointment on May 22 with my orthopedic surgeon. We discussed the surgical options for my left knee. He told me that he'd be scoping my knee, and once in he'd decide if he'd be doing a lateral release or microfracture surgery. Lateral release has a 80% success rate, while microfracture has a 67-70% success rate. The recovery is about three months of very intense physical therapy.

Apparently, however, when the surgery fails, it fails bad. In those cases, people frequently come out worse than when they went in. But since my knee has been getting worse to the point where I had pretty much accepted the fact that I'd be using a wheelchair almost full-time within a year or so, and the worst case scenario is the CRPS I'm already in the early stages of, there's really no reason not to get it. I just have to decide when it will be and set up the appointment. I'm looking at either late August or late December.

If anyone has had this surgery, or knows anyone that has, please tell me about the experience in the comments.

Right now my bipolar is Kinda Manic.
Right now my pain level is 5.

My Disablist Week

2009-05-16T12:32:00.000-07:00

I had some unpleasant disablist experiences this week that I feel I should share. There will be an update on two of them later as they are ongoing. Well, there might be an update on one of them, because I doubt they'll actually get back to me.

The Big One really goes back to last week, when as I mentioned, I had awful conversation with my County Assistance caseworker. On May 1, I received a packet from County Assistance that I had to fill out in order to keep my insurance. Not a problem, I have to do this all the time. We all do, it's part of being In The System. It had to be in the office by May 8, not postmarked, on her desk. I also had the option to fill it out online. Not trusting the post office, I went with that.

So I do the online form on May 7 (I admit I procrastinated a little but I got it done on time), and when I finish I'm confronted with a page that lists all the stuff I need to mail or fax by May 8. Are you fucking kidding me? I did it online so I wouldn't have to mail anything in. And it's a long list, including stuff we don't even have and can't even get. I call my caseworker the next day (May 8 - The Deadline) in a panic - "What do I do? I don't have this. I can't get it. I can't lose my insurance. I can't go off my meds. I can't stop seeing my doctors. I did it online so I wouldn't have to mail it in." Her response was basically "Yea, well, not my problem." She did, though, eventually agree to extend the deadline to May 13 (more on that in a minute), which was something. But she said if I didn't get it in by then I would lose my insurance and "no one wants that to happen." If I can be literary for a second, the word "wants" was practically dripping, that's the only way to describe it.

Over the weekend we rounded up as much of the stuff as we could and bright and early in the morning Monday (May 11), my father-in-law drove almost an hour down to Philly to get me to drive me a half-hour to Trenton to get my birth certificate (he's awesome and I can't thank him enough). After which, my wife faxed what we had to my caseworker from work. Again I say, this was May 11, two days before the new May 13 deadline. I called the caseworker to make sure she got it and had to leave a message on her voice mail. I did this again on Tuesday, May 12, and again on Thursday, May 14.

On Friday, May 15 I received a letter from County Assistance saying that my insurance was to be canceled on May 24 because she did not receive my paperwork. This letter was dated May 12, one day before the new deadline. I called my caseworker and left yet another message. My wife called and left some messages. The caseworker called her back. They continued to play phone tag and never actually spoke to each other. Though the caseworker did eventually say that if we fax over the paperwork again on Monday (May 18) everything will be fine and I won't lose my insurance. My wife saved the voice mail, as I said before, she's awesome. We'll see how this plays out.

Less important, though more embarrassing, was my grocery shopping trip on Thursday. When I go shopping I use one of those folding grocery carts, because, well, I can't really carry anything. Most of the bus drivers let me get on in the back on the bus, where I sit in the seat closest to the back door and hold the cart by said door. It's easy and it's out of everyone's way. Sometimes I get a driver who feels like being a dick. Once a driver wouldn't let me on and made me wait for the next bus. My ice cream melted. This time however, the driver made me unload my cart and put each bag individually on the bus then bring the cart on folded, then do the same in reverse when it was time to get off.

He said it was Septa's policy and that it was a safety issue. How is it safer to make a person on a cane get off and on the bus repeatedly while carrying bags heavier than his doctor wants him to be lifting? Oh, and the driver didn't even kneel the bus when I was getting on and gave me a dirty look when I demanded he kneel it when I was getting off, in fact, the driver was incredibly rude to me throughout the whole incident (which, by the way, is not the first disablist incident I've dealt with from Septa, not by a long shot). I would, however, like to give some points to the woman that helped me get my stuff off the bus, thanks.

When I called Septa's customer service number to complain, the woman I spoke to told me that it was their policy and that is no exception for disabled passengers. Her attitude also told me, not in so many words, to go fuck myself when I pointed out the discriminatory nature of their policies. I simply can't understand why they want to make it hard to disabled people to buy food. When I asked for a number for someone higher up to ask why these policies are in place, she told me someone would be calling me back. I don't think anyone will, my wife and friends think they will though. Again, we'll see what happens.

On a much, much less serious note, on Wednesday, we went to the Franklin Institute. I used a wheelchair because, well, I can't walk for that long. While looking at an exhibit, a man tried explaining said exhibit to me like I was an idiot. Why do people always make that assumption - that if you're in a wheelchair you're stupid? It happens all the time, and from what I hear it happens to everyone. Baffling.

I do have some positive, not-me, health news while I'm posting. My mom got the results back from her PET scan and her cancer's gone. This is obviously very good news.

Right now my bipolar is Kinda Level.
Right now my pain level is 4.

On My Anniversary

2009-05-13T08:53:00.000-07:00

I'd been meaning to write a post about a rather unpleasant encounter with my County Assistance caseworker regarding my health insurance for a few days now. I'm still going to write that, just not today. There's something else I'd like to discuss today, my wife. As I've mentioned before, she really is the most supportive person I could have ever hoped to find. And today, on our fourth anniversary, I'm going to elaborate on that.

We met when I was still able-bodied, though we didn't start dating until after my injury. She knew about my mental illnesses and my physical disabilities before we got together and didn't care at all. This is an important point because they were an issue for the girl I was dating when I hurt my leg. My girlfriend-at-the-time complained often about my using a cane to walk and my wanting to use a wheelchair for long days out. She frequently made offensive comments about my mental illnesses. I was miserable. When we broke up and I started dating the-girl-I-ended-up-marrying my life took a definite step in the right direction.

My wife, however, is amazing. She makes sure I go to my doctor appointments and take my meds. She pushes me if I'm using my manual wheelchair and yells at me when I say that I feel guilty about it. She's yelled at people on the bus for me and argued with ignorant disablists all over the place on my behalf. I honestly don't know what I'd do without her.

One of the most impressive things is that one of the aspects of my disability that really bothers me doesn't matter to her at all. I can't work. It kills me that I can't. I loved working, I really did. I enjoyed it and was good at it. But now I can't do anything to contribute financially to the household and she has to support us both. I'm still fighting with Social Security so I don't get any money from the government yet. My wife is ok with all this though. She says things like "I always wanted a housewife" and "When we have a kid, you'll be a great stay-at-home dad."

My wife is wonderful. She's the most loving, supportive ally a disabled person could ever hope to find. She's my partner, my advocate, my teammate and my friend. And I love her more than my powerchair.

Right now my bipolar is Slightly Manic.
Right now my pain level is 4 (the vicodin is working well).

An Open Letter To People On The Bus (Blogging Against Disablism Day)

2009-05-01T12:05:00.000-07:00

Dear people on the bus,

You see the sign that says “Please give up this seat for elderly or disabled passengers”? It's there for a reason. It's there because it's incredibly painful for people like me to stand at all, let alone stand on a bus that's swerving and stopping suddenly. You see me standing there, hanging desperately on to the strap with one hand while my other hand holds my cane to support the weight that my leg refuses to, as well as holding my shopping bags. And yet, you do not give up that seat, I would like to know why.

I understand that I don't fit your idea of what a disabled person looks like, so you might not think I'm really disabled but sometimes people get hurt young. It's true, it happens. To be honest, when I was 20 I might not have thought it either, but at 21 I knew it all too well. While no, it is impossible for you to know my life story and to know why and how I came to be in so much pain, it is clear what my story at the moment is. It's written in the wincing expression on my face, it's told in my grunts and exasperated breathing. How a person can look at another human being and not say to oneself “You know, perhaps he needs this seat more than I do,” I simply cannot grasp.

Perhaps your not getting up is my fault. I admit I don't ask you to. I'm not much of a “squeaky wheel type” and my mother raised me better than to take a seat away from a senior citizen or a woman (chivalry or chauvinism - you decide). Although, she did raise me this way before standing was an endurance challenge. How did your mothers raise you? She had to have taught you to give up your seat to a disabled person. No, that's not fair. It's not her fault or your fault, I'm the one that doesn't ask you to get up. I don't want to be rude. I don't want to impose. I don't want you to think I'm another cripple demanding special treatment. It has to be my fault.

But I don't think so, for I see your faces. You don't think I see them. The way you look absolutely any way but in my direction, the subtle guilt that always confuses me – why if you obviously feel bad about not getting up do you still refuse to do so? I really don't understand this.You clearly know that you're being assholes, and yet you do nothing to remedy the situation. It wouldn't be that difficult to assuage the guilt that is written all over your faces. All you have to do is say “Excuse me, would you like to sit down?” But you don't, you never have. I've been riding the bus for four years and not one has one of you ever asked me that question. And it breaks my heart every time.

The worst times are when I fall. Someone cuts off the bus and the driver stops short or he takes a turn too fast, it happens all the time. And if I'm standing when it happens I fall. And still none of you offer me your seat, usually none of you even offer to help me up. It's then that I lose my faith in humanity. Not even because I'm disabled, but because I'm a person who fell and no one seems to care.

So next time we're on the bus together and it's a bit crowded, if you see you me standing there wincing and wobbling, I would really appreciate it if one of you would let me sit down. It's not going to cause you any discomfort and it's just common courtesy. The upsides for you are you get to go around all day telling people about the "good deed" you did and you won't have to make that shame face.

Crippled Carny

Please take a look at the other, better B.A.D.D. entries here.

Right now my bipolar is Slightly Depressive.

Right now my pain level is 4.

An Introduction

2009-04-29T10:34:00.000-07:00

I'm starting this blog because I thought it would be a good idea to get my thoughts about my disabilities down instead of just letting them fester. Well, that's not entirely true. My wife suggested it, I think because she thought it would be a good idea for me to get my thoughts about my disabilities down instead of just letting them fester and then unloading them all on her. Awesome and understanding as she is, she really doesn't need all that.

I guess I should probably tell a bit about myself and said disabilities. I am 29 years old and I have walked on a cane since August of 2001. I hurt my left knee at work in what I was told was a repetitive motion injury. Doctors can't seem to come to an agreement on exactly what the hell I did to my knee. Past diagnoses have included torn ACL meniscus, torn cartilage, arthritis and that there's nothing at all wrong and all the pain is psycho-somatic. My current orthopedic surgeon tells me it's patellofemeral pain syndrome and the early stages of complex regional pain syndrome. I have an appointment later this month to discuss surgical options. All I really know for sure is I am in constant pain, I can't put weight on it and I can't stand or walk for anything even vaguely resembling an extended period of time. If I'm going to be out for more than a short trip I have to use a wheelchair.

I recently found out that my liver is all kinds of messed up. I have auto-immune hepatitis (which basically means my body thinks I had a liver transplant and is attacking my liver as a foreign body) and NASH (nonalcoholic steatohepatitis – I don't drink and never have but my liver is acting like I'm an alcoholic, it could result in cirrhosis). I'm a carrier for hemochromatosis (an inability to correctly process iron) and might have Wilson's disease (an inability to correctly process copper).

I might be epileptic. Or I might have some weird kind of migraine that mimics the symptoms of epilepsy but not the brainwave patterns. But the meds are the same so it doesn't really matter I guess. They should also help with the regular migraines I get too so that'll be nice. I get what may-or-may-not be absence seizures when I see flashing lights or flashing color patterns. This means I drift out of consciousness (absence seizures are what used to be called petit mal seizures), I don't get the flopping-around-on-the-floor kind.

I have bipolar disorder and obsessive-compulsive disorder. My bipolar is very rapid cycling, with swings usually lasting a few days, though the changes are sudden and very extreme. My OCD exhibits itself mainly in contamination obsessions and mysophobia (fear of germs), obsessions with symmetry, groups of 3, perfectionism and finding patterns in numbers. I wash my hands a ridiculous number of times in a day and I can't stand to have others touch my food unless I know they've washed their hands immediately before.

In addition to that I also have several congenital heart defects and asthma. Less seriously I also have a hiatal hernia, a torn esophagus, arthritis in my neck, a bad back, shitty peripheral vision and I wear glasses. I also probably have central auditory processing disorder (it's kind of like dyslexia but with hearing) but we don't know for sure because they only found it recently and they can only test for it in kids. In short there's so much wrong with me that when I die I plan to just donate my body to the Mutter Museum.

I'm currently in the process of fighting with Social Security to try to get benefits. I'll keep you all posted on how that goes.

My plans for this blog are to talk my experiences as disabled person, to discuss disability issues, and to not start so many sentences with the word “I.” I chose to finally start this blog now because I wanted to take part in Blogging Against Disablism Day on May 1.

Right now my bipolar is Slightly Depressive.

Right now my pain level is 5.