Reasonable Fear (Trigger Warning)

I have been reminded in the last year a great deal that fear is never reasonable, except… I was wrong to tell myself this. Fear is most often quite reasonable and is a rather rational emotion. It is our reaction to fear that tends to be irrational. It is the flight or fight response that I have personally been taught to ignore. I didn’t put this together fully yet but I feel it.

I am very much in a bubble at times and in looking at places of California, trying to fathom living where there are more people in one town than in the entirety of my state I noticed the palm trees. My brain did it’s meta data response and I realized, Palm Trees have coconuts. My imagination made a three dimensional build up of a variety of coconut related cataclysms. These included death by coconut during earth quakes to random car accidents, and then they lost some sense of reality. So I asked if they grew coconuts, a logical question given that I wasn’t really sure about the biology of palm trees. I am still trying to resist the urge to read everything I can find about palm trees to stay my fears.

M my dear friend who lives beneath these Palm Trees of Doom assured me that they are sterile palms ordered specifically because of this. My mind now sees the city of Los Angeles as a fan of disabled palm trees, after all palms are generally used for food and that is how the trees reproduce. So, they are unable to fulfil most of their tree related daily living tasks. I am not sure why I went there in my brain but M being M assures me it is cute and he can see why this is a reasonable fear.

How could I avoid the trees? I am also afraid of fires and earth quakes and mudslides, all of which do occur in California. He has been through earthquakes without noticing them, something that I just cannot concieve of. Yet, my fear, despite the amusing mental images of Hollywood disaster movies with coconuts as the disaster and the myriad of things that could go wrong because of the coconuts, including them actually being bowling balls courtesy of the Flintstones and my allergies to coconuts are reasonable fears. They are in my mind because I either am vulnerable to them or I don’t know how to stop such things and everyone is vulnerable to the flaming coconuts being rained down from the firey palm trees.

I am also afraid to go somewhere expensive. I am looking at the cost of living and with housing, it isn’t worse. The food I need is less expensive, the housing is far nicer. I am just afraid of change in general. I have never really been anywhere with so many people. That and Venice appears to be a place where all the side walks are actually flat not standing on end or so broken up that you choose streets or sidewalks that end randomly with no way down and that’s if you are bipedal. I am afraid of going somewhere else, because I know that I will no longer be one of the smartest (okay that one may not be true) I will no longer seem worldly or cultured to the surrounding people, and their minds are open. Not just comparitively but despite a lot of flaws in general US citizens, California was the start of the independent living movement. I am effected by the actions of the open minded and willful who live and have lived there.

I am afraid of not being hungry, though literally I am full there are more options there for me to consume. There are more ways for me to be. There are things to do. I could go to a museum without it being dramatic. I am afraid of not being isolated by who I am anymore. I have never lived in any other place except this poverty driven world where all the bad things that happen to me are called fantasy. I am afraid that in this place so far from the evil I know, the evils I do not know are as bad or worse.

I am afraid of being so near the people I care about. What if I don’t meet their expectations? Distance has buffered them some of my horribleness. I am a great person but I am also capable of being cranky and raw. I am also able to hide a lot of my pain via distance. At least I think I do. That may be untrue which scares me too. M comments sometimes that every picture I have my eyes are full of things, secrets, pain, and the unspeakable things I have seen are there. He sees other things. He sees the softness I try to hide at all costs, he sees my hopes and dreams there, and he sees fear. He sees mostly heartbreak and he says strength.

I am afraid all of that will go away. I am also afraid that once I see the ocean I will stop yearning to stretch my wings and fly. All of these fears are reasonable. It is very reasonable for me to look at this life changing decision I have made that I keep remaking, and feel fear. Yet, why should I live somewhere that I am unhappy with just because somewhere looks expensive on the surface? The math is showing me that California is a valuable investment. The housing is better, the cities are cleaner in a physical sense albiet more polluted and populated, and instead of being near people I am terrified will find me who want me dead in plural as well as my mother who thinks she loves me but acts out of fear and hate…. I will be near a woman who is like a sister to me, my god children, and M.

M who I love so much that sometimes I cry out of fear of that love. M who didn’t let me give up. M who loves me too. I will be somewhere that I don’t have to hide every piece of myself when I go outside. I am afraid most of all of trying to live without the masks that New Mexico requires. It is ahborrent here, and I am terrified of this hope I feel when I think of living in California.

Yes it rains more there than it has in the last four years, yes it is sunny. It is not as hot as here, which is better and I have a theory that the rain being more than a rarity will make the disabling effects go away. Not the water allergy but, that’s what long sleeves are for. Plus, if I go to California, I can stop crying when I think about how much I want to be there. Even if the palm trees had grown coconuts. It would be worth it just to take the risk of being happy more than sad.

The only unreasonable fear is the fear denied, the fear that you let paralyze you into a mental, physical, or emotional death. Fear is a catalyst for change most often, it is the fear we treat as if it is an outsider that hurts us. So I embrace my fear today, and start to lay the plans into the great and wild unknown. I have taken on many burdens, and perhaps it is time to take on one that actually has benefits that I can see and account instead of guessing at the possibility of mere survival. Besides, I think Sprite would love the beach. She likes to roll in the sand here, and an endless swath of sand? She’d be in heaven.

When I break things in I really break them!

I am learning about my limitations this week. Tomorrow the repair man comes for my chair again. Before you panic I will relay what I was told on the phone by the company. This is normal! The chair comes to the company prebuilt, and this means any fiddly bits that are loose won’t get found out until I get it. They do check the chairs but heavy use vs a test drive means that this is normal.

My poor chair… it has scraped up paint from my barely fitting in my door way, the seat belt fell off, the headrest lost it’s ability stay up, and the chair keeps getting stuck randomly and spins it’s wheels without moving. All of this is the result of my going out and down the road. I would go on side walk but the side walks here don’t all have curb cuts! My next project. I am relieved though, that this is normal. I wondered if I was somehow being too hard on this chair when I am doing my best to treat her like she’s a spun glass ornament. Fragile, in need of preservation.

I mentioned my care routine for the chair to the guy on the phone (I forgot his name) and he was impressed. Apparently most people don’t check their chair for any oddities every day, they don’t try to avoid walls (I disbelieve this one) and not everyone charges their chair nightly. I do. This chair is my ticket out of here. Here being right at my computer desk praying that I don’t have to access the HDD where it will skip. I’ve found I cannot watch movies with Media player but I can with Divx for example.

When my chair refuses to go, I get scared. I start imagining horrible things, and to be honest I have yet to shake off the feeling that the front door is too much to pass. I hear Gandalf the Grey in my head. “YOU SHALL NOT PASS.” Each glance at the door, there is the whisper. I may never leave if this chair breaks. I consider this a side effect of disability and likely this is linked to my PTSD and the recent abuses.

I will pass the door, I am going outside at least once a day. Plus I need an excuse to wear a fantastic hat! If anything I am rebelling against my own fears each time I go out. This isn’t a bad thing but it can be a bigger challenge than I am prepared for. I almost went out yesterday for a walk but I was too afraid. So I sat in my yard and stared up at the sky, and I wished for a butterfly to take my wish to the stars.

No butterflies but the moon rose in the afternoon and I felt peace again. I haven’t seen the moon in a long time, and I have missed her. I know as the sun grows hotter I will spend less time outside in the day and will sit in my yard at night with a cup of tea studying the stars. The divinity of the sky has always felt peaceful to me.

I worry that tomorrow the repair man will somehow deem me unworthy of my chair. Logically, this is not how this will go but I have a lot of unfounded fear. The recent experience of no pain meds has also left me with a shaky sensation in my emotional heart. My physical heart feels fine but my emotional heart is tempted by fear.

I know a life time of fear and I have either overcome or accepted the things that scared me as a child, some I am working on still but this new fear has the potential to cripple me where other things have not. If I let the fear of pain that has seeded itself in me win I won’t move, I won’t breathe deep and I won’t sing. A part of me feels broken, but I know that part of me is merely bruised and that bruise overlays old wounds.

I am breaking in my freedom, and Freedom won’t break on me. I keep telling myself this. Yet when I prepare to go out I have to check over a list of what feels like a thousand things just in case my body breaks down. Epipen, inhaler, cellphone, sunscreen, hat, sunshade, kitty cat, cat food, water for her, drink for me… the list goes on and on and on..

So in the end I am left to see that despite parts being loose or breaking under the strain of normal use I am not broken. I must remind myself that if my chair cannot handle going to places I have to go, then something needs to be fixed and it isn’t my life. I have waited patiently for over five years for freedom. I have fought tooth and nail for freedom. I have split myself into parts to survive being penned up. Now I can fly free, and it is time to take the kid gloves off. I will still care for my chair but my chair must care for me.

I am Kateryna Fury and I have the capacity to overcome great fear. (Green Lantern reference for the non nerdy among you.) It is through my will, my hope, and my dreams that I will over come this fear. Why fear pain? I know pain intimately. The pain that destroys me can only win if I let it. I did not let it, so why let the fear of this pain grasp me? Why fear being stuck inside? I have spent years stuck inside. Is it truly being inside I fear or is it now a fear of what I have forgotten, what I have missed and being lost in the big world? Why fear the risk of the sun or my body failing? Won’t the risk come to me if I try and avoid it?

I think I’ll go for a walk now. I must see the sky and the sun. The fear has been broken.

Gender

I am a woman. I have never had doubts that I was female… or have I? There is a period in my life I do not talk about often, when I wanted to be a boy. I tried to cut off my breasts, I shaved my head, I desperately wanted to stop being female. I do identify as a female but, it was terrifying because the world hates women. This was one of the steps that lead me to know that persons who are born transgendered, inter-gender, or even without a gender (links to Norrie and Clair Lewis) are born that way.

This period helped me to deal with my struggle when I realized I am bisexual. I actually have a stronger preference for women than men. I often joke that this is because women taste better, to lighten the mood if I am outed. I live mostly in the closet, because my community is in accessible and I am fearful. Also, because of my mother’s reaction the first time I told her. She told me I was instantly a whore. I was slut shamed, I was told I was a liar, and I went with it because I had no recourse.

I admire anyone who lives with their sexual identity and gender identity in the open when it does not match up with the lie of Gender Binary. I have many friends who are between the two pegs that privilege reigns with in. I admire the strenght it takes just to be yourself when there is little to no protection for you in this world and your gender or lack there of makes you a target. That must be beyond terrifying.

I just did my census form, and there were only two check boxes. I secretly hope that those who do not identify as female or male make their own box. This of course may cause issues later but, the fact is, if you don’t fit in the little box then make your own!

This post is in honor of the 11th Annual Transgendered Remembrance day. This link is to a blog called Deeply Problematic, a blog with a series of other links about today and this issue and this link is to the memorial.

I find it striking how many of our brothers and sisters did not have a photo. Something about that strikes me. The lack of photo mirrors a lack of acceptance.

I light a candle and the candle is for each loss we know of, and the many we do not. I light a candle so that no one forgets your murder.

The Institute and the Adult (Trigger Warning)

I just wanted it to be in my head. I realized after losing a caregiver because the caregiver broke down mentally that I wanted the problem to be me. I was crying, struggling with the feelings that come with being vulnerable and endangered, struggling to get food, and the pain that comes with moving my body in ways it cannot really handle. I wanted it to be in my head.

If all the problems were in my head and were not real my life could be as it once was. For a moment I had everything, I had love, happiness, my health was improving for the first time and then… it was snatched away. I was starting to feel whole again. Then, I was snatched once more back from the brink of success. Even personally success in this world is a struggle for most people. The minority that masquerades as a majority has made it this way. I just wanted to go back to that place, I imagined it all.

Some of this comes from how much easier it seemed on the surface when all my disabilities were fragments of my mind, that nothing was really wrong with me. I just had to stop making it up. I just had to get a better grasp on reality. As I think in music and color rather than words, the thoughts surrounding that are truly discordant violin notes, the colors brackish. It’s a sensation of mocking. That life was a mockery of life. I was ill, and as long as it was in my head there was no hope of recovery.

If the issues with a caregiver turning violent were just in my head, then, I would still be in danger. That urge to put it all in a neat little package is dangerous. It’s a form of denial, though this denial is socially acceptable. It stems from my being medicalized at a young age. Nothing can just be, it must either have a cure or be a figment of my deluded little mind. Delusion can be comforting. Delusion means that there is nothing I can do about it but stop thinking. Reality requires action.

I am tired of action! I am still haunted by the sensations of my day. That prickling fear as I heard the first crash. I let it go on for a half an hour before I confirmed it. I let myself think it was just me being “jumpy.” Jumpy is code for triggered. I couldn’t ignore it when Sprite began to scream. Sprite, even when she signals things to me is a very quite service cat. She tends to use her paws and a soft flittery meow or a purr instead of a yowl. She yowled. The sounds in the other room were growing louder.

I had to choose. Do I risk my safety and my service animal’s saftey in order to retain this idea that every time I am afraid I am just being delusional? How many times did I do that with my ex-husband before I accepted that he was hurting me? I can’t be sure. However, today I didn’t let it get past once. I had to give up my delusions. I chose life.

Life is never easy. I suspect the main reason that the temporarily able bodied among us want our lives to be inspiring is they cannot concieve of happiness with a disability, as most of them are not happy. They spend their existance toiling for the gain of others. This is less so in countries outside of the US but, it is still a blatant reality. Some of these persons may also be in that same delusion about their ability, or other issues such as sexuality and gender. They waste their reality on delusion.

Since I became aware that therapists are not all knowing, and that my Mother has been desperatly wrong, I have faced delusion many times. Still it can over ride my own instinct to surive. I sit here in a room with the acrid odor of cleaning products, something that is avoided when they are used properly. The antisceptic odor makes me feel almost as if the institution is right there. That is the entire core of it.

If the issue is in my head, then I am outwardly safe. If it is in my head I can handle it. I can control it. If it is real, and no one believes me, I am at risk of being locked up. The core of my terror in speaking out today was in losing my freedoms, because a caregiver has more power than I do. After the agency head Robert spoke with my now ex caregiver today, he confirmed that she admitted she was over reacting to the situation. I don’t know what her future holds, but, I worry for her. I worry too, for anyone in danger that will stay there for fear of the instutition.

Some of the people who come across these words will state, “It can’t be that bad.” I still have nightmares, usually around the times when I have to fight the hardest for my right to merely breathe about the institutions. The place I was was actually not that bad compaired to many. Still all the labels thrown at me, the drugs that made my brain numb and my body bleed? Those were terrifying too. The threats that I would have electroshock therapy used on me if I didn’t behave a bit better. The behaviors that they threatened? Those all consisted of things like avoiding things that made my stomach hurt at lunch, having trouble sleeping, and having nightmares.

Some of the staff were wonderful. I remember their faces in flashes, and the comfort they brought. I remember the coldness of the beds, the tiny windows with bars, and the high fences where the only bit of reality I could see was the top of the bank building where my Aunt worked as a lawyer’s assistant. I remember more the cold showers, being watched. Not being allowed to pee without being watched. I remember the male staff with those. It was never female staff.

I remember the mean staff the most. I had to think hard to survive around them. Some locked me in isolation for tripping. Some punished me for not knowing a new rule that no one had bothered to announce. One in particular made fun of me for gaining weight when I started to eat again, after being a small child with an eating disorder. I managed to conform so they wouldn’t drug me by force. I took all the pills, even the ones that made me sick and lose time. I did my best.

I remember each tour of every facility. Once my mother was gone we got a second tour. We were shown the isolation room, the one with the bed and straps. We were shown their needles. We were told added rules. There of course are always the secrets and ways that a kind person in there may share on how to survive. Each place had it’s special etiquette. Yet always, in each one I was watched while bathing.

There was the one place that is technically an institution that I do not count as such. This is the only place that helped me. The difference there is I wasn’t treated like a waste of flesh but I was a person with needs, responsibilities, and the ability to help someone else.

It is thoughts of the institutions that hurt me that I think of when I must tell someone in authority a truth they dislike. It is threats of such places that keep me struggling to be somehow better than my reality. It is a terror that comes with knowing that as an adult the institutions are forever, and they are far worse than any I had as a child.

It is with that in mind that I wanted my fear to be something caused by a personal insanity. If that is the case, then I never have to speak up. I never have to say a word. I never have to fight. I don’t have to find a way to call for help. I can just mourn the loss of supposed sanity and keep trying to live on the “outside”.

The last place I left, I was told I would be locked up again with in five years. I was told I could never function as an adult in society, that I was hopeless. This was said by a therapist. This was the one institution that helped me. My mistake, the thing that earned me this ruling was telling the therapist, “I don’t think all my pain is somatic and I think it’s okay for me to be afraid I will fail.” My mistake was in believing that something was not a mental health concern, and in believing that I merit feeling what I feel.

I almost was not let free based on that conversation. This was also one of the better therapists of my childhood. Today, I declare myself free. None of it has been in my head. None of it will be. If something is in my head as a fear related to post traumas, depression, it does not mean I have to live in a cage. I promise myself now that I will not exchange freedom for a lie because I risk being caged. I am caged by those lies more effectively.

When the Doctor is Afraid

Ah the joys of seeing Specialists. My dermatologist today was afraid to treat me. It took me a while to realize what he had done. “Everything looks normal.” Patches of flesh, pustules, moles that look like the poster children for little melanoma and the remnants of the allergic reaction to Sunblock… all are normal?

He barely skimmed my chart, he didn’t want to touch me or look at me. Instead he said, “In Six months, when the insurance covers another visit come back and see the new dermatological plastic surgeon. He can take care of those moles.” Moles he had declared normal.

I did get a new prescription to try for the Hidradenitis Supprativa. A topical antibiotic and an oral antibiotic. I am about to take the first dose. I had to drain the blisters first. It wasn’t until I was leaving the hospital pharmacy that I snapped onto the problem. It took the strangest behavior I have seen at a hospital for me to click that the entire experience belonged in the Twlight Zone.

I was the invisible doorstop, a woman tried to shoved past me with a cigarette in hand and I blocked her. I didn’t have to move an inch to perform the act, I just had the entire width of the chair. I can’t suck it in, and as I choked on the smoke of her freshly lighted cigarette I let myself snarl. “Put that damned cigarette out. Are you insane? Taking a lighted cigarette into the hospital could be considered assault.” I didn’t have to think about my words, I just let them flow freely as my mind snapped the puzzle pieces into place.

The world had gone mad! The madwoman did thank me for stopping her. She stubbed the cigarette into her hand and continued her journey inside. I shuddered while seeing the odd spiderweb connections between her obvious challenges and the doctor.

I have three rare skin conditions, additional sensitivities, and other conditions that are also genetic and rare which can change how my skin reacts. I understand the doctor not wanting to treat me. I just wish he had been more direct about it. I am not afraid about the moles he left alone, but, I do find it odd he insists I see a plastic surgeon turned dermatologist. I will obediently have the mole cut off by the better man, but, what if he has the same hesitant fear?

I have run into this a few times. This is the cause of my high Doctor Turn Over Rate. They quit working and usually I fire them. They either run out of coping ability, they run out of knowledge, and they stop working. This one at least offered some suggestions but all were redundant, stymied by my allergies. He didn’t even try.

It is disappointing but I have my vanity for a bit longer. After the appointment my Person and I went to see why his check was short and as a result I wound up getting to eat a bit of fast food (yay Del Taco being Gluten Free) and a pair of clip on earrings to supplement my new ear needs. The dermatologist seemed competent but more comfortable with the able bodied woman or man who doesn’t know much about their flesh. He spent most of the appointment condescending about how Moles don’t exist. I let him, and when given the option of having him cut my head-mole down a peg or waiting six months to have it done right? I chose to wait.

What can we do when our doctors fail us in this manner? Sometimes we have to let them fail. He gave up the option of learning, of trying, and now if my head-mole turns out to be an extensive tumor as the one on my face was, the glory of removing a rare and still unnamed type of tissue is not his. It goes to the next doctor. That is a bit of comfort, as not every doctor is emotionally qualified to take on the harder cases.

He only failed me by not being upfront with his comfort level. When a doctor is afraid, it’s okay to let them go. I forget this at times. I forget that a doctor passing up the golden opportunity of treating me can be a good thing. If your doctor is too afraid, they will make more errors. They will take longer to find answers. I know, as you journey from doctor to doctor hunting for answers this feels painful. It is still better to let some doctors pass and to have other doctors treat you. I would rather have a wait of six months than permanent scarring with recurrent surgery because my doctor did not make the right choice.

For the comments section, feel free to add your own experiences with doctors who are afraid and doctors who fail.

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.

Spiderweb has no Spider

March is Brain Injury Awareness month. I have brain damage in my fine little skull, all from untreated concussions, working through the pain, toughing it out and yet, I am never certain what issues spring from what challenges. Since I have autism and brain damage, as well as visual and hearing ailments, what causes what?

Too, when I sit out in the sun for five minutes and note my pustules later, reacting to the presence of the very thing that makes food grow and light fill our world, I have to guess, is this exact blister from Hidradenitis Supprativa, a side effect of Ehlers-Danlos Syndrome, an actual pimple, sun poiosning as my mother calls it or is it still something else.

Then, with the issues with walking. It could be a side effect of the Ehlers-Danlos Syndrome, the Spinal Cord Injury, or just a minor pelvic dislocation, but is it something else? Did falling through that chair do more damage elsewhere that no one can see?

Multiple disabilities are a huge challenge. When i thought I had a single disability, I had unanswered questions. When I thought I had two, I thought the world was ending. Then with three, it all began to feel alright, but with four I was once more mourning, and with five I became angry. With six, I felt as if i should just die. With seven, I just stopped caring about how many I had, and began to fight to thrive. With eight, I found it status quo, with Nine, Ten, Eleven, I began to count it all over again.

I am a spider’s web, everything is connect, everything has always been here it just has a label. The labels are flies, sticking in my webiness, wiggling and shaking things up. So far, the labels have done very little to better my life. Usually they complicate it. If I tell a doctor about more than one disability, they usually give up on me. What right does that give them to deny me a quality of life?

I want to see, I want to hear, I want to live in a world without fear, I want to dance, I want to be just me, yet me is not without disability. I no longer believe in a cure for any of my ailments, except the spinal cord injury. I do not want them. I fear the changes to personality that treatment could’ve brought. Sure, I might not have had it as hard as I have. I might have had more than just a single man to teach me how to be a person. I might have had friends.

Or I might have been worse off. I get tired of able bodied people, those in denial of disability, or those who think we are all cookie cutter identical creatures telling me what works for their disabilities.

I have tried experimental treatments, mostly for my PTSD and they made it worse every time. EMDR, I have no idea what the letters mean but I remember the treatment. It worked for every other patient, so I was just a failure for not becoming magically better. Penicillin allergy even has an example, a doctor wanting to see just how allergic I was, because of course it costs more money to have another medication and money has more value than the patient.

When I was younger, long before my autism diagnosis I had an Occupational Therapist funded by the school. She did teach some neat things, we worked on my fine motor skills, which still suffer, and made earrings. We did all types of activities, molding things in clay, dancing. This was what I did for recess, another bit of isolation granted by my abnormalities. I was lonely, until this program came forth however. There I met the other kids who were a little like me. This woman decided to have my mother take a rubber brush to rub all over me, to try and desensitize me to the world. She did not ask me, she just called my mother in and during school one day she grabbed my arm, while talking to my mother and began to scrub my flesh.

This worked on the other children, so it had to work on me. I started screaming. It felt as if she was pealing off my skin, I screamed, and screamed. She told me to shut up, it would all get better. My mother took the brush out of her hands and asked why she would do that, when I was sobbing. I don’t know the end result of the conversation, but we took that brush home. It was just like the ones sold to wash dishes with, and that is what my mother did with it. I think she chose to lie to this therapist. I do not remember because I went into my head, flashing back to times when my father did try and peal away my flesh.

The sensory overload pains me to ever remember, it wasn’t just a sensory overload it was a flash back and a denial of my right to unique treatment. I never accepted the treatment of this OT again, I went, but I became surly because she wanted me to be like the others. She wanted to scrub me, until I just didn’t care. It did not matter to her that it hurt. I still have nightmares from her scrubbing.

I wish I could say it never happened again, but, she would scrub me herself, at times using this as a punishment. Too often the medical community does this, forgetting that each body has a unique chemistry, each brain a unique perspective. Now I fire doctors who do not listen, they get one shot and that is it with me. I have to be harsh like that to survive.

My cat William, the one with brain damage, has a similar problem. Touching his paws hurts him. He has dangerously sharp claws, cutting me when he doesn’t mean to, but to trim them means to cause him that same sort of pain. I figured this out after I had used our PetoFiler nail trimmer on him, it vibrates, rotates and basically sands down the nails. Sprite loves it. William was in pain for days and I barely tipped the claws off.

Each method for a traditional manicure fails him, I have yet to find out how to protect us both, but knowing what it is like to be tortured by someone thinking they know what is best, I back off. I would rather have cuts than send him into a world of pain. If you are a doctor, reading this, try and remember your patient might feel pain differently than you do. Sometimes I have to go naked because the pain from cloth rubbing against my flesh is as potent as that scrubbing brush.

It was yellow, it was multi-textured, and it is one of my worst nightmares. Those moments are on par with time spent in the care of a diagnosed psychopath. Do not traumatize your patients by thinking you know it all, or that every treatment should work for them. Humanity is full of individual people, not a bunch of identical organisms.

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