The Illusion of Disability

Sometimes I long for the illusions I had as a child about the world. I was well aware of disability, a man my mother dated had MS, and when he needed it he had a fancy chair. He explained to me the rules about wheelchairs and respecting the boundaries that exist. I was very little, six or so, and he would treat me like an adult. He even let me play with his civil war era Bugle, long before  I was a trumpet player.

I remember the day he seemed frustrated by something I couldn’t understand. He was having trouble getting his medicine. In my line of thinking, if you were sick enough to see a doctor, and he saw the doctor a lot, then you could get your medicine and be on your way. When your body stops working you would go to the doctor and come back home with crutches or a wheelchair and live again. It was that simple.

I wonder if some people never grow out of this stage of illusion. In my world there was no need for money, there was no cost involved in having your needs met. After all, if you cannot live without something then it’s the duty of those around you to help right? This was what the Church taught us and at that point i hadn’t developed my ability to question authority. Do unto others in my mind appears as socialized medicine does. I do hope I am not as naieve about the truths and hardships with those programs as I was about disability.

In those foggy memories I remember him telling me that his body ached. He and I had a connection, and I shared with him a secret that everyone does. I remember the look in his eyes, he looked so sad. He told me that wasn’t true but I said, with the facts I had making me believe this absolutely, “Everyone hurts all the time. I do. I think my mommy does because she always cries when she thinks no one can see.” He pulled me into his lap, which hurt him a lot. He was the first person I had ever met that didn’t like touch as much as me. He seemed normal to me. He still does. Again the illusion that he would not face discrimination. I had yet to see what that was. That wasn’t coming for a few months.

He didn’t speak, he just looked at me. Then he handed me the bugle and told me to play taps. He never asked me to run outside after that. He didn’t protest my sitting in his library with the books. I know what changed now. He knew then that my body wasn’t really “right”. I’ve had that moment with others. My niece, she has the same genetic challenges I do. I wish I could tell her it isn’t normal to hurt. It is for me, and that maybe is an advantage. I have been in pain since birth. This man of shadows and sorrow, he was not born this way. Does Muscular Dystrophy hurt before it develops? Is it genetic? I should look into this but right now I am running on my own shadows and sorrow.

Being unable to go outside because of the damaged chair has left me fighting that sucking sensation called depression. It got worse as my mic died, so my creative outlets with sound went away. I already lost my visual creativity due to my disabilities. Even typing this I feel trapped. I am in a prison. I wonder, was this man in a prison? I remember his hands shaking as he ate. I remember thinking that it must be sad to shake. Now I do. I just wanted to make him happy. I didn’t ever want to cure his illness, as I didn’t understand cure then. I just liked it better when he would smile.

I held my illusion that disability would not be so bad, if I had what I needed, I held it until I could no longer believe this was true. The first time I gave in and asked for assistance with mobility came after a  year of struggle. It came after I nearly died from dehydration and from passing out in the hot hot sun. It lead to my discovery that I  am literally allergic to the sun. I had dropped out of school and I was no longer doing anything. My doctor told me, “I am not sure we can give you a walker, you may stop moving.” It’s the same line. It doesn’t matter the disability, the same line is used to save the insurance people money or to save the doctor paperwork.

Here is a list of costs incurred by my government by not giving me what I needed in the last 365 days. I suspect this list is common more than rare.

Item                                   Average Cost in USD ($)     Quantity

Emergency Room Visits  $500 just to enter               10

Ambulence Rides              $700                                       10

Tests in ER (xrays etc)    $100-900    (visit total)      40 (guestimation, likely higher. Averaged 4 blood tests per visit and 5 xrays per visit.)

Medicine related to ER visit $50-$200                       13 (prescriptions total, not pills. Average pill total was 90.)

Casting, braces, etc             $500                                      2

Food                                        $75                                         1 (One meal in hospital, the administrator complained in person about my dietary needs)

Total: 30875 * quantities over 1 were averaged between the numbers above

I got the numbers off of the bills the insurance rejected, to try and force me to pay. I did not include visits that were not preventable. Those are just the falls. JUST the falls. This means when I had pneumonia, when I had the anthrax infection, when I had allergic reactions I did not count those above. I fall at least once every two hours that I am awake. I also happen to be having to pee every two hours. I stand up, I walk and I fall. Sometimes I fall enroute and on my return trip. (Pun SO not intended).

The cost of the wheelchair I have been prescribed is listed at just under $7000. I am fighting to save the insurance people money. I never dreamed disability was preventable. I was always aware that pain existed and sometimes you needed help with pain. I never cared about that, until I found out that you don’t get the help you need without a screaming fight that lasts as long as you live.

I am tired of being told I will be less mobile because of a wheelchair. I sit as still as I can so I do not fall off of my couch. With a proper chair, I won’t just be able to go outside, or go pee without falling… I can move, I can wiggle, I can fidget. I may even be able to arrange to go swimming. Swimming hurts as bad as bathing but I love it. I can move freely as if my spine wasn’t slowly being severed by my own body. How can I move, dear scientists turned beurocrats if my legs do not get the signals? Have you found a way to repair my spine without KILLING ME? Or At all? Since nerves once severed do not regrow… why don’t you just give in?

Insurance company, preventative care is cheaper. I wouldn’t need the wheelchair in the first place if you had actually approved preventative care. You are costing you money not me. The true financial burden to the citizens who work (some of whom are disabled thank you) is not me. It is your ineptitude. No, not every ER visit would be suddenly gone, but on average for the last five years I would have only gone FOUR times. Three of those allergies, once for Domestic violence issues.

I miss the illusion that should I ever be in need of anything, it would be there. I miss the idea that I could rest at night without this unabiding terror that should something break like, a wheelchair or my computer, I will not suddenly be cut off fromt he world, trapped in my own home. Even with my computer I feel trapped. The same feeling would be there without my computer and with a working wheelchair. I know this. It terrifies me.

Right now, I am once again suicidal. I already got the help I need to make it until morning. M talked me back to a safe point. Still, insurance people, you should stop trying to murder people by denying them their needs. Stop pushing the idea that an increase in quality of life does not matter. When you or someone you love is suddenly in this minority, you may still be clueless… but I will fight for you, if my hands aren’t full fighting for my right to live.

Denying me a wheelchair is denying my right to live.

Aftermath (Trigger Warning)

After I wrote the post last night I cried for an hour, I tried to talk with my Person and wound up just asking him to read the post. He understood a bit before, but after he read my words he could not argue with my need to have him seek out the words. I was so drained that I could barely keep my eyes open. I was almost asleep when I shifted and felt something under me. I shifted to try and get off of it, I thought it was a pen, as I often lose them in my blankets and do my work from my bed when I have to.

I couldn’t find the pen. Moving around had woken me up enough to help me realise I had to pee, if I hadn’t then I would’ve been awake in two hours and more off balance. So, I went to the bathroom. My body had a somatic reaction to the memories combined with an existing abcess due to the Hidradenitis Supprativa. To explain, I must add to the details of last night. Part of what I left out was the mention of genital mutilation. My father used my vagina as an ash tray. I have scars from both the HS and his gridning out lighted cigarettes in my flesh. I don’t know if I screamed but if not it was only because I couldn’t physically.

The pen I felt was an abscess that ran the length of my canal and was as wide as one half of my vagina. The size means it was there for a while, but the stress or perhaps the freedom triggered it coming to a head. It hurt. I called my person and asked for medical supplies, then I started trying to figure out what it was. It felt like dough with a liquid center. I ran my fingers up the length of it and at the head the abscess filled my hand. It didn’t burst the first time, but there was blood on the gauze. I did it again, and the mass got bigger. This time it burst.

It took a long while to get it fully drained, but, after the initial pain I felt only relief. Yes, that was a serious infection, and yes I have notified my doctor and we discussed treatment. The treatment is for me to keep it clean. If it fills up again and I can’t keep it drained I will go on antibiotics. We are waiting because of my allergies to all antibiotics, each has a reaction so it has to be worth it for me to take the pills.

While draining this wound I was forced to deal with my femininity directly after reliving the trauma. I never want to be female after, because in my mind it would’ve been somehow better if I was a boy. That justification didn’t hit me, nor did the self hate. I felt sorrow but not hate. I had to love myself to tend my wound. The world didn’t end and I continued to function. We did lock William out of the room due to my flashbacks. He would be in danger. Sprite is able to help me with my PTSD and set right to work once the medical gore was taken care of. She watched from the floor while I cleaned and waited for my Person to shut the door. Even now, she is at my side, resting with me.

There was a dream but it was not a nightmare. I was simply a butterfly fluttering in fields of flowers, the wind playing a song in the trees. Everything was peaceful. I flew up into the sky and there I became the wind and began to sing. Once I blew through the trees I became the tree and I grew. I am an oak and solid, I will be here for generations, I will outlast the injuries and pain. I am rare, I am strong. I then was the acorn, falling to the earth. I turned into a flower seed and fed the butterfly, before I was flying up again, on brightly colored wings. I have some tears that are falling as I share my dream. They are tears of joy. They feel different than the tears I shed in sorrow.

They are soft, and light. They are cleansing. I am looking at my wall, where I have a mural made out of butterfly stickers. They fly up, and up, swirling around a Jonathon Earl Bowser card I was given, around one another. I should finish the mural. I can hang the moon, and they can fly higher. I still feel safe. I feel free. There is more life inside of me than before. The infection is purged. I can keep growing.

I am not afraid to look at myself in the mirror. My person cannot see the scars in my flesh, he only sees the woman that I have become. The child who died that night can finally be laid to her rest. She can finally have her peace. I can finally be whole.

I am not sure when this all happened. Any survivor or victim or victim survivor knows this is a process. I have done this mostly alone, which may have made it harder. The alone was not wise. The alone made it harder. The alone felt safer. I no longer have to be alone. I have so many wonderful things in my life, wonderful people, and it is time to grow.

I have knowledge that is new too. I became a dancer because of that night. I couldn’t bear the stillness. Being injured and paralysed trapped me in fear. I denied the truth, I denied just how afraid I had been of being injured once more. When it happened and I lost everything, I secretly thought he had won. When I saw him after, my terror was not just of him hurting me but of him seeing he had won. He only saw that he had lost. I miss the dancing, but, knowing that I chose that path to spite him I can let it go. Perhaps I will teach someone else to dance, perhaps I will choreograph a dance with women who have survived or who have been victims. To celebrate what we are. It is time to grow.

Sink your roots deep, raise your branches to the sky.

Confessions and Denial

I have a confession to make. I have been in denial about the extent of my back injury. This was partly to survive, but mainly out of fear. What does a spinal cord injury mean? To me it was this frightening set of words that meant I would never do anything again. I have already proven to myself that this is not true, and finally I needed to know. What exactly happened when my spine began to fall apart? What happens as the damage is furthered? Why am I not supposed to exercise? Why do I keep having palpitations and trouble breathing but my heart seems fine? The last one is what made me start learning. Four years of denial, have ended. The answers are frightening but, empowering.

I found this nifty tool, a spinal cord map! This was the first step towards opening my mind to the information. The map gives a general break down of what happens when the zones are injured. My Spinal Cord Injury is overlapping two of the zones, and knowing now what I do, I can understand all of the above. T-12 and L-1 are both damaged, broken, and cutting into my spinal cord. My sacral region is also damaged, though to what extend I am not quite sure.

I still have feeling in my legs, most of the time, but I have limited control over them. I can do a bang up zombie impression when I am trying to walk, my arms outstretched for balance, moans escaping me as I fight to hide my pain, jerking and halting as I move slowly forward. Zombies aren’t diseased corpses. They are people trying to walk with damaged spines!

There is another set of broken bones in my back, between my shoulder blades. Eventually, if the spine goes there, I will be paralysed in a different way. Some of this terrifies me. I am supposed to focus on stillness, forgoing excercise because moving allows the gnawing teeth of broken bone to flex, shift, and cut into my spine. It hurts to move anyway, even my hands moving enough to make these words causes pain, a deep rooted ache that feels as if it will  never, ever end. It might not. If it doesn’t am I lucky? That depends on what comes with the ending of my pain. Death? Not so lucky. Paralysis? Not lucky. Healing?  Extremely unlikely, and that would be better than winning the lottery.

I must adapt. I admit openly that adaptation is not a choice, it is the only option. I can risk my life and my health to excercise or I can try to get used to a stillness that is unnatural. It is natural to move, to dance. Watch a small child play, and they are moving, unless in pain. Pain is a rescrictive thing, it constricts us and binds us in ways that our brains cannot always comprehend. That is why I am asking for more help, I need help with food, I cannot always force myself up to get it. I need help to preserve my tattered spinal cord.

In my imagination my spine is like a worn out dress I used to own, it was bright and colorful but eventually it began to wear thin, holes appeared, until one day when giving a speech I lifted my hands and it fell apart. I was thankfully wearing underwear that day but the people watching my speech saw much more of me than intended. I just grabbed my coat and pulled it on, buttoning it, then finished my speech. I no longer have the confidence to fight my body, to risk wearing my spine through. It can’t be tied back together. I cannot move through my life with a tattered spine, pretending nothing is wrong. I must accept it, and adapt.

This is not an act of strength. It is an act of life. I am not exactly sure why, but, I find no inspiration in others who have ‘over come’ their disabilities or adapted. I think it is because the truth is that you die or adapt. That is the exact thing that makes humans what they are. We adapt. We may suffer, we may struggle, but adaptation is not an act of greatness. The acts of greatness come after, with the knowlege gained and what you do with it.

I have admitted many things in my essays and writings here. Now I am admitting that I am afraid. I am afraid to adapt. It means change. I also know that every time I twist, every time I turn, every time I hear loud snaps from my back, this is something I cannot ignore. I already have an appointment in a few weeks with my doctor and I am going to ask for help. I need to see a nuerologist, I need a reassessment of my body. The wheelchair system I have is hurting me. This must be addressed. There is change afoot, and it is unpleasant.

I am admitting too that my mind is dulled often by pills and pain, together, one at a time, seperately. I am not helpless but my body leaves me vulnerable and now so does my mind. I have dreams, I have hopes, but they feel alien. Who am I to dream? Who am I to hope? These are forbidden emotions, just as to dance was forbidden and is once more. The world feels twisted, pulling at me from all sides.

I live in a world of oppression and today it is too big. I am going to write a story in a few moments, for a story telling contest I want to enter. I am going to chase down my dreams, I am going to live, I am going to adapt. I just am not going to give up. I want to. I want to dance, but, if I do I will be paralysed. There are worse things than paralysis despite what people are taught.

A wheelchair is not the end of the world. I just feel that fear anyway. I am in a wheelchair but I am still afraid of it. I am afraid now that I will pass out while using this one, that I will be hurt. This is not the freedom I felt at first, that first taste of being able to go. Now, it is a fear that does not belong. I am afraid too, that when my spine gives I will suffocate. As my spine degrades it effects my ability to breathe. I feel now that I will surely die if I cannot sing. This is silly, of course I can live without music yet I fear it. I once had this fear about my dancing, and although I can dance in my head, I can feel my muscles flexing and moving, I fear that this will not translate through, with music.

These are my confessions. I have been guilty of denial, self harm, and giving in to irrational fear. Apparently I am not super cripple today, just a human. I confess to being just like everyone else who faces adversity and disability, human. I confess that needing to adapt is frightening. I confess too, that I am determined to find a way to get what I want while respecting the needs of my spine.

Selling the Magic Cure for Pain!

Right now, there are dozens of ads airing on a handful of stations in your area, perhaps every single one, schilling pain drugs. I tend to change the channel when these magic pills are advertised. Nothing cures pain, it just blocks the signals to the brain. “My Fibromyalgia pain has hampered my life, until I found this pill and became an above average American with no pain who can do it all, this pill turns you into Super cripple and has a musical name to boot! Try Elyricembril today.”

The expectation that these commercials set is unrealistic. I used to hold out hope that a pain pill would come along and take the ache out of my joints, or a pill would make it where my joints would stop dislocating. Tonight, I moved my pillow two inches and dislocated my right shoulder. Right then, a Lyrica commercial came on. I couldn’t change the channel, and saw a bunch of white privilege added in to boot. Not only is this woman schilling a drug, but, her family is all happy, has everything they need despite her invisible illness. There is no suffering all because of their magic little pill. This woman is blonde, thin, and has no needs beyond their pill.

The reality is so different. All these commercials do is add to the sense of defeat that a person with a disability faces. Those who are the hardest hit have no diagnosis, their bodies just fail. They do not get the luxury of knowing why. My list of medical labels is a luxury, I do take it for granted, but it is worse for those with no labels, no treatment, and often no job or home.

A part of me yearns for socialized medicine, with our government understanding the need for medical care for everyone. This would mean my caregiver would not have to ignore those aches and pains he feels daily, that to me indicate that there is likely a problem. As the depression that we are in, it is not a recession that is merely denial by wealthy men who fear the truth, gets worse so increases the amount of untreated medical ailments. Some include the diagnosed but many are ignoring small injuries tearing themselves apart and whispering in their minds, “When this recession ends, I’ll get a magic pill.”

There is no magic pill. There is nothing that takes away the pain. There is nothing that can cure you if you get sick enough. Sometimes you are just born sick. You do deserve medical care, but, turn off the commercials. The medicine that works best for many is not new, but is older medication ignored until nothing sold on TV, written on a pen, or advertised to doctors who are often paid to give out these pills works. There is no magic pill. There is no Truth in Advertising.

I might sound bitter, as I lay here writing. I feel pain in my body with every breath. I know there is no cure. There is no end for my pain. It has gotten worse through my life, each day it gets worse. I have tried everything, and usually once this is revealed my doctors give up. I have not given up. I am far from bitter. I am merely growling at a threat. The threat that kills hope, the threat that removes treatment, and the threat that further disables the mind. There is no magic pill.

If you are reading this, feeling alone, and need support. There is that. Not only are there support groups everywhere, but, you can contact me via my blog either in the form of a comment or using the contact form and I will talk with you. Friendship is free, and is often the best thing for those in pain. You aren’t alone. There may be no magic pill, but, that does not mean there is no hope. If you are reading this and have been feeling the ache of frustration, anger, or sorrow knowing someone else may see these advertisements and feel false hope then the crash that comes after, reach out. After all, if we save ourselves, support ourselves, or merely even convince a doctor to try something old, we win. There are many ways to lose, and the magic pill is one of them.

  • Polls

  • Ye Olde Archives of Fury

  • Top Rated

  • Top Clicks

    • None