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Human Rights Law

: Never In Our Names

Paralyzed Nation 2: The Sequel - The View Of A Paralysis Victim

By Julia Rain

And yes I do mean victim. Not in the "Oh woe is me, I am helpless" sense (though I will admit to sometimes feeling that way - even non-paralyzed people feel that way, and the paralyzed have much reason to), but in the sense that I have been truly and actually victimized by the substandard health care, laughable rehabilitation services, and lack of access to real treatments like stem cell research, in this country.

This diary is in response to the very fine diary, "Paralyzed Nation," that was published a few days ago. I began to write a comment, but the comment became too large and decided to become a diary instead.
But first, some back story. At the age of 17, I was coming down the stairs of my loft bedroom, which required me to turn around once on the ladder, due to the shortness of the loft ceiling. When I turned around, I banged my knee so hard on the railing that I blacked out and fell ten feet, slammed my hip into a drawer, and shattered a vertebrae that bruised my spine. (Sound confusing? Try explaining it to doctors over and over.)

The vertebrae I shattered was T-12, which is in the lower back. Everything below the line of spinal damage becomes paralyzed. Now, a spinal bruise is much, much better than a spinal cut or a spinal sever. Spinal bruises have a better chance of healing, therefore my injury was deemed an "incomplete injury", which means that no doctor I ever went to could give me a prognosis more specific than "there's no way to know..."

The doctors removed a rib and used it to repair my backbone, which now means that because I don't have a rib there, the muscle in that area is knotting and hardening, and might even try to calcify (become bone) to make up for the missing rib. This is right above my hip on my left side, the same side with the hip bone that is still, almost five years later, bruised, the ankle that won't move (the only part of my body I can't move, however), and the indescribably horrible pain in my knee from what caused this whole mess in the first place - banging my knee on that railing. But of course, when a patient comes in with a broken back, searing pain in the extremities is just a footnote.  At least the knee pain waited a month before it came back, as I began to acquire more feeling and movement in the area post-surgery.

It took me a year to get out of the wheelchair completely, 6 months just to be able to stand with a walker at all. Another year and I replaced the walker with "Canadian crutches", a marvelous invention that is like a cane with upper arm support. A year later I was using just one and a year after that I could use a real cane. Now I don't use the cane at all indoors.

I can personally assure you that poor and paralyzed in no way to be. You know, before I read "Paralyzed Nation" part one, I thought people in wheelchairs had an easier time getting the care they needed, access to supplies, etc. It always seemed to me like things were easier back then. Perhaps that was only because at the beginning I still held the naive belief that a doctor's job is to heal the patient. Before I read the aforementioned diary, I figured that I currently live in a bureaucratic nightmare day in and day out because I'm trapped in the limbo of not in a wheelchair, but not able to walk very good without a cane and still partially paralyzed. Now, I see, we're all living in a bureaucratic nightmare.

I really do wonder how other paralyzed people handle it all. Maybe they have social workers. Here in South-East Pennsylvania, as far as I can tell, the social workers don't do anything except give you the forms to apply for benefits. Maybe they have better luck than me. Maybe they get injured earlier, and their parents handle it. Or maybe they're older and less determined than me, and are completely screwed. Either way, much as I can't stand libertarians, because the world they envision would leave people like me to die on the streets, this is red tape that needs to be ripped to shreds and then set on fire.

You might think that this sort of language means that I'm an "angry cripple". But I'm not. I don't blame walkers for my non-ability to do what they do. It's not their fault. I don't get mad when people complain about having to walk far. I admit that during the few months following my accident I did sometimes roll my eyes when my best friend would say "I don't want to get up and have to walk to the fridge". I'd try not to glare at her.  I recall once replying to a problem of hers with the answer "Okay, now wiggle you toes, then smile." At the time, I thought it was great advice. It would make her more grateful. After all, I was grateful every day that my injury wasn't worse, that I still had full use of my upper body. But then I realized that wiggling her toes meant very little to her, because she had no way to know what it was like not to be able to. She could see what it was like for me, sure, but that's not the same thing. At least I had been partially paralyzed, so I could somewhat imagine what it might be like not to move my fingers. But she had no way to know. And I was so, so glad that she didn't.

Now when someone around me complains about having to walk, I don't get upset. I myself sometimes complain about having to walk a far distance, overlooking, in that moment, that at least I can walk it, and am not still bound to a wheelchair. That doesn't make the strain on my still-not-fully-functional legs and my weakened, twisted-into-knots back any less painful, if easier to deal with. I understand pain, I understand fatigue, and I recognize that I am not the only one who suffers them. I also know that just because my pain and suffering is usually worse than that of those around me, that doesn't make their suffering any less valid. Tell someone undergoing a bone marrow extraction that at least they don't have an abscessed tooth and they're likely to want to hit you.

One thing I read around that time still makes my blood boil however. This man had spent some of his money to help renovate buildings to make them more handicap-accessible. When asked why, he replied "Oh, well, the kind of stuff I like to do - Skydiving, Bunjee jumping, Motorcross - I figure I'll end up in a wheelchair someday, so I feel for these people and I want to help them"

I literally shook with anger. I thought, "How dare you! Excuse me, sir, but no, you do not 'feel for me'. If you did, then you would understand how precious a thing mobility is. You wouldn't jammer on nonchalantly about throwing it away for cheap thrills." I truly wish I'd written that down and sent it to him, but at that time my anger was as coherent as it is now - though looking back, it is still just as raw.

Of course generally I'm not a huge fan of groups who give out free wheelchairs or the Special Olympics or any stuff like that. I want all that money and energy spent trying to cure us, not just help us adapt. This is a position I don't voice often, as it is very un-pc and I'm well aware that no non-disabled person would ever get away with speaking ill of any disability program. Of course it's different for me. Some people have worse injuries, injuries that currently have no chance of improving at all, and so they need these organizations much more than I do. But they also needs new treatments to be found even more than I do. The word "independent" is another one that gets on my nerves. I don't want to be independent, I want to be normal. I want to be better. Screw independence. I'm pretty sure the people who care about me would be willing to do a bit more for me if it meant I could work on my recovery.

And that, actually, is exactly what I did. I worry that organizations that promote independence promote it ahead of recovery. My husband had to help me practice walking. We tried to think of it as more of a date. We'd go out somewhere safe and pretty and I'd walk with him standing behind me, ready to catch me if I stumbled. I remember when I reached 100 unassisted steps. I was so happy.

Sometimes we'd go to a gym and I'd use the stationary bike. My doctors told me not to do this, that it would cause me to pull muscles. It did, at first, but it's also responsible for a good chunk of my recovery. If I'd listened to my doctor's instructions about physical therapy I'd still be in that wheelchair. Their idea of physical therapy was making me pay $20 per session for a lady to do the stretches on me that I already did at home - before my half-hour work-out session.

I think that the steps suggested by The Christopher & Dana Reeve Foundation are excellent. I will list some of my own and extrapolate on them as we go.

1) Full Funding For Stem-Cell Research. This one is rather self-explanatory, but we must concentrate on embryonic stem cells, which work better, rather than adult stem cells, which are more politically correct. While I'm on the subject I will add that however immoral Sarah Palain thinks I may be, what could possibly be more immoral than daily throwing away the hundred or so embryos that could instead be turned into cures for terrible diseases and conditions? Whether you believe these embryos should be created in the first place is unimportant. It cannot be argued that the moral choice is to simply throw away the hope of millions like it's Thursday trash. Which choice is more respectful of the power and importance of the embryo?

2) Increased & Free Access To Surgeries such as electrical implants to stimulate nerves, and other such remedies that can help a paralyzed person recover, not just adapt.

3.) Throw The DEA completely off the backs of people with nerve damage and their doctors. We're hurt, not addicts. Get this through your thick, uncaring skulls.

4.) There needs to be an improved infrastructure within the medical establishment to help inform patients how to get better. Not adapt, get better. When you have to re-learn to walk, you forget how, because you probably never really thought about it before.

5) Free transit service for the disabled. By this, I do not mean make disabled person fill out (literally) forty pages worth of information explaining why they can't just use public transit. They want to know how far I can walk on my own, how much pain this causes me, where, why, etc. Honestly, I'm tempted to just email the director of mobility services and say "Hi. I can't use your regular transportation because I'd have to wake up at 5am, walk four blocks (carrying my supplies), then take the bus to where I have my appointment (which is also a few blocks away) and then wait around until 5pm when the bus comes back to that part of town again." Once I fill out their packet, they'll probably want to know why I can't just use a wheelchair. Well, because it's more difficult't and painful more me to use a wheelchair because the arms are not designed to be the legs, and though my legs are weak, they are still better at walking than my arms, which have always been abnormally weak for some strange reason. This really didn't help when I was given two subsequent wheelchairs that veered to the right to the point that if I only pushed one side I'd just end up going in a circle. I really hated the wheelchair.

Sadly, it makes a lot of sense that so many disabled people live in poverty. It's tough even if you're lucky enough to live in California where (last year) you could make $856 (that includes food money, no extra food stamps for you!) If you live in PA, like me, you get $674 + $27 from the state, but if your spouse or just someone you happen to live with, like a roomate, makes a semi-decent wage, no food stamps for you. This rule needs to be eradicated immediately in all states.

It doesn't surprise me that minorities are disproportionately paralyzed - the article mentioned that the highest percentage of spinal cord injuries happen at work, and minorities tend to have the most dangerous work. And for some reason, the more physical labor you do, the less you are paid. There are some sectors of the economy where this is not true. For example, I think those people who work high up on those cranes during construction of gigantic buildings or maybe bridge maintenance make decent money. But even soldiers and firefighters really aren't paid very well. I was shocked when I learned that soldiers weren't paid well - growing up next to an air force base, 90% of the base kids were wealthier than those of us who lived in town. Then I met my husband whose dad was in the army for 14 years, and they were far below wealthy. I used to think people joined the army for the pay, which I guess is true of the truly destitute. I still have trouble understanding why people join, but that's a different topic.

My point is that we need to have an open discussion in our society of why those who risk their lives (or at least hurt their bodies, such as roofers who get knee problems) are paid so little and rarely given good health benefits. I am glad that our society values intelligence and therefore pays skilled workers higher, but the gap is much wider than it needs to be. I haven't exactly decided what my position is on this, if manual labor should be paid more, less or equal to workers who have degrees. I just know that we need to have the discussion about why our economy still looks way to much like feudal Europe. I'm adamant that we eliminate the unwritten rule that to make a living wage you must graduate college. All this does is then mandate that for a really good job you must have at least a master's. And on it will go.

More importantly, college should never be seen as just a way to get paid better. I think that's one of the reasons so many teens reject it. White teens, too. Do you ever notice that? It's always the middle class white teens who could go, but don't and the minorities who work their butts off to be able to go? That's certainly how it worked out in my group of friends anyway. I guess white kids who didn't grow up in poverty don't have as much of an understanding of how crushing it can be. This is different amongst minorities. I think it has a lot to do with high school not being intellectually stimulating, but just taught so that the students can pass a test. White kids always have the idea that they're ignorant of the world and it's ways, which is true, and they don't always want to go right to college. Some of them become broke after leaving their parents home, and decide they'd rather work. This is probably the most common option. Or, in my case, they just decide that they're not going to go because they're supposed to, but because they want to - when they get around to it, presumably after they land a publishing contract and get the various bureaucratic muck that takes up more time than trying for that publishing contract in their lives sorted out.

And speaking of bureaucratic muck, that brings me back to the paralyzed (see). The amount of bureaucracy that I, as an 18-year old sheltered suburban white girl, had to learn to navigate was (and still is) staggering. There's the qualifying for social security and Medicaid or Medicare too. There's the getting an I.D. and handicapped placard (with a doctor's note, of course). You must first go to the DMV to obtain the form, then take it to your doctor to sign, then bring it back, in person, to the DMV.

I remember when I decided to switch my coverage from my HMO (Kaiser Permanente - totally evil) to MediCAL. In order to do this, I had to cancel my coverage with Kaiser before I signed up for MediCAL. MediCAL takes at least one month to begin coverage. So basically, under California law, a woman in a wheelchair with a one-year-old spinal cord injury had to - had to - be uninsured medically for an entire month. This was my first real taste of boiling anger at The System. The worst part, of course, is that there is nowhere to direct that anger. Every person, every agency that you talk to directs you somewhere else. It is never anyone's responsibility to care for, or about you. They transfer you to another place, who tranfers you again, then that person sends you back to where you started out, where they still won't help you. It really makes you want to throw things.

The you have this bad, mysterious pain in your knee, so you tell your spinal cord injury doctor, who sends you to a primary doctor, who refers you to a knee doctor, who refers you to a bone doctor, who just says "I can't help you". Then when you start to cry because it's already been two years and the pain just keeps getting worse, the (male) doctor suggests that perhaps it's a mental, not physical, problem. Because apparently a woman can't cry without being insane. So you get online and research other specialists who might know something and you ask your doctor for the referral. Your doctor says "If they decide to see you, someone will call you in three months to schedule an appointment in six months. Then they decline to see you at all, and you've just spent three years trying to get someone, anyone to care about the agony you're in, and you've gotten nowhere. So then you give up.

Then maybe you decide to go through with a lawsuit to get a settlement from the people who own the house where you got your spinal cord injury. Miraculously (probably because you actually have lawyers working for you) it works, and you get some money. Of course, this money is hidden in the middle of a gigantic labyrinth in order to keep various interested parties from accessing it, and also to ensure that you keep receiving your state benefits (you only got enough money to last a few years, after all - and if you lose state benefits it will be gone much, much sooner).

Inevitably, of course, the labyrinth foils you too and your access to the money is very limited. Meanwhile, even though this labyrinth (heretofore referred to as a "trust") was set up specifically to do all the things mentioned above, the interested parties still try to take it, and the state decides that it makes you ineligible for benefits, or at least it should reduce your benefits.

So social security decides you must re-write your trust, which you can't do,  at least not yet, because it would give the interested parties easier access to it, and in the meantime they decide that they have "overpaid you" and take something like $1,000 out of your benefits in increments over a year.

Then say you move to another state, where the state decides that your trust disqualifies you for health care unless it is re-written. Then, six months later, it relents, and says you can have health care as long as you hire a Pennsylvania lawyer to re-write your trust. Then you get a letter that says your social security payments are about to be stopped, also pending a re-writing of this trust. So at least it's all happening at once.

Then your state insurance company believes that you only need one catheter a day (really, do they only have to pee once a day?). You only need one a day, apparently, because according to their medical director, catheters can be cleaned and re-used, even though the FDA, Medicare and the Veteran's Administration all say this is un-safe. There's also the fact that it says "single-use" right on the friggin' box. But I guess the insurance company thinks they're being generous.
This is a picture of a catheter. This, along with cranberry supplements and occasional antibiotics (both for urinary tract infections) is what is keeping me alive. A hundred years ago I would not have survived. Now, because of this magic little device, I live. But what's the use of a medical miracle if some insurance company deems that it can safely be used incorrectly, thereby making it more likely that the person will get sick, just for profit?

Meanwhile, you get a bad sore on your foot, you decide to try again to get someone to care about the pain in your knee, you develop insomnia, chronic stress and an anxiety/panic disorder, which among others things makes it hard for you to concentrate on even your first love, reading, one of your fillings falls out (right in the fron too - noticeable), and your doctor "doesn't believe in narcotics". Then, imagine every third thing you have to do to keep all of these balls in the air, goes wrong. Such as when my doctor wrote me a prescription to mail to the catheter company (because my doctor has way better things to do than use the office fax to send the prescription) and she wrote it incorrectly. So the company had to call my doctor and get a verbal confirmation, which takes weeks and meanwhile I have to shell out $60 for a box of thirty - yes, boys and girls, it costs an uninsured paralyzed person $2 every time they go pee - and send in the receipts to my trust for reimbursement.

Also, the trust company you have gets bought out three times in six months, and the rules change all the time, so eventually whenever you need to buy something you can't ask ahead of time if it will be covered, so you must buy something, pray that it will be covered, then mail in the receipt to the trust for reimbursement, which can take up to a month. This is especially frustrating when you hit a deer and have to pay a $500 deductible, and get your taxes done ($200) and pay your taxes, which are actually supposed to be paid by the trust, and not you, because without the trust you don't make anywhere near enough to have to pay taxes) which is $348 and suddenly you're out $1,000+, which is rather a big deal when you make $674 per month, even if your husband has a steady job.

Then there's that time last year when the IRS thought my trust was written in a way that would allow them to take $75,000 out of it, even though it is illegal to tax a settlement. That was really fun.

Oh yeah, and the whole not being able to walk thing. And chronic pain.

All this time, the one thought that has entered my head even more than "What would it be like it I hadn't been injured and had studied to become a naturalist like I planned?" or "Why didn't I pull myself up in those fleeting moments when I knew I was going to black out?", is the powerful, overwhelming urge to reach out and touch someone else and force them to feel what I am feeling. To show them what it's like. To prove that I really am in pain. To make them see that I'm not a faceless number, but a living, suffering, human soul. I would give them the pain, the anger, the anxiety, but only for a moment, just to make them understand. Never to harm them.

To be honest, it is a much more violent thought then I'd prefer out of myself, but my intentions are pure. I believe that it is essential that people try to understand the position, the outlook, the suffering of others. This is the only way society can truly be served. Otherwise we've just got uncaring bodies doling out services with no regard for the person they serve.

Sorry if I became a bit overly-philosophical there, and I know this was very long, but I haven't remotely told the whole story. I didn't mention the time when, shortly after my injury, an ambulance had to come and take me to the hospital because my temperature was 103, and they needed me to walk to the stretcher. I said "I can't". They said, "Come on, it's only two feet. You can do it". I almost started crying, and it took my mother a couple minutes to explain to them that I literally couldn't walk. (of course I know I just mentioned it now)

Then there's the way that some people would babytalk me because they assumed that since I was in a wheelchair I was mentally handicapped as well. There are dozens of other things I could mention. Perhaps hundreds. But I'll leave them out for now. What I've already written is far more than anyone should ever have to handle, and I won't ask you to handle any more.  

Full post as published by Never In Our Names on April 27, 2009 (boomark / email).

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