An Informational Guide: Too Disabled For Contact Lenses? Not Likely!

I was told I was too disabled for contacts a few times in life. When I was a teen and my glasses first began to cause headaches from the weight of them, that was the verdict. The insurance however did cover, due to the heft of my prescription thinner lenses fully. As an adult they quit doing that and it became a three hundred dollar a year expense, due to the needs I have in glasses. I wrote off contacts and the nightmare stories my not so great parents told me about them had me certain that I was a contact lens away from blindness. They lied and twisted facts to make me fear something that is simply to me now. The simplicity comes with experience and adaptation.

I am not a contact lens expert but I am an expert in being disabled. Like all other people with disabilities I am a master of adaptation. It is how we survive. So when last year my ears began to bleed and the pain in my nose was so great I couldn’t bear it I mentioned it to my doctors, one of them was smart enough to figure out that ehlers danlos syndrome plus glasses as heavy as mine may be a problem. A few pokes and prods later and it was confirmed my glasses when I wear them tear my ears veeeery slowly downward and push the nasal bone up into my head. Wearing glasses became one of those terribly dangerous things.

This left one solution. Contact lenses. I am a wheelchair user with an inaccessible apartment, one arm guaranteed to function, limited guarantees of hygiene due to allergies and the sheer number of medical things that can and do go wrong in a given week. Yesterday I couldn’t use either arm and was relegated back to my glasses. I am still not in them full time but that is as I am told normal. As I said I am not an expert. Its about sixty forty, in favor of contacts now however. I spent weeks hunting for answers on how to adapt contact lenses.

1. First things first, expect it to be hard at first. Then easy. Like all things its a skill that takes practice. You will not be allowed to take your contacts home until you can show them in their office you can get them out and put them in.

2. Its okay to not do it their way entirely. What truly matters with contact lenses is the hygienic environment. Since I cannot stand before a mirror much less reach a sink in my wheelchair I began to cheat. I wash my hands very well, dry them on paper towels, then cover my hand rests and controls with more clean paper towels and put one on my chest for the inevitable dropped lens. This probably won’t work for someone using a manual chair but my point is to adapt the methods to your needs as best you can. My contact lens solution sterilizes so I also compensate by covering my hands in it before I begin, and before I go hand wash I have laid out my eye drops, my solution, my closed contact case on my previous paper towel. This means less fussing.

3. Referring to two not doing it their way. The people who will teach you how to contact lense do not often have to adapt their methods and thus may not know how. I was told to get a mirror with a lot of lighting, to use both hands (and just try because lifting my arm and dislocating it was beyond the comprehension of the very nice but not disabled contact lense woman).I did try that at first as there is a hand dance involved. One hand is to pry your eye open and the other to present the lense just so to your other eye. This of course was not possible for me. I adapted the method to my body by using my middle finger to hold the lens and not my pointer, and moving my head to the lens on my hand. I also do my best contact work in utter darkness and have not once succeeded with a mirror. Its pointless as I am nearly legally blind, I hover in that cusp of low vision that comes before it. If I cannot bend my head down to the other hand I will often use one hand and my middle finger again prying my eye open with thumb and middle finger and my pointer to insert the contact.

4. Everyone, able bodied or not, has to adapt. I quickly became aware of the silky sensation of the contacts in my eyes, and I rather find it pleasant. In my case this is in part due to being able to buffer my intensely dry eyes with a liquid barrier. I expected it to be gooey but my lenses are soft and smooth. Being sensory aware due to autism and some jacked up nerves it was easier for me to without vision find my contact lens and control it. I am the fastest to adapt to this that the contact lens specialist has seen, to date. Many people who can see and are “normal” as much as that exists struggle to differentiate the sensation of the contact lens from the solution. You will find the things that simplify contacts for you.

So now that I gave my vague tips that all boil down to, don’t be afraid to experiment a little and adapt, my method in detail is as follows:

Get up, do not put my glasses on as I get a headache going from contacts to glasses, though you may not. Due to low vision I am very adapted to my house and not seeing but may still step on a cat or their toys. If you choose to experiment with this I highly recommend you practice placing your wheelchair in the same spot and with someone there pace your steps so you memorize the lay out of your house. Things must go back exactly as they were or you will walk into things and otherwise hurt yourself. I go to the bathroom, then put eye drops in and set up my lay out at my desk all the way in the living room. Return to the bathroom, wash hands really well. I pretend I am a surgeon. Return to the chair with paper towels and go back to my desk. I go slow when blind and warn the cats. So far no accidents.

From there I close my eyes and see which eye burns less. My eyes burn first thing in the morning and sometimes it never stops. That eye is going to be the easier one. For me it is almost always the left eye. I save it for last. My right eye has scar tissue that makes it harder to get lenses in. However, even without that one eye will always be harder than the other due to the fact even ambidextrous people like I used to be when I had guaranteed arm functions have differences in each side of their body. My scarred up and roughed up eye tends to be belligerent and sometimes swells up from just eye drops. I also sometimes get hairballs in my eyes while I sleep and do not know it. So I take my time and I put drops in until I cannot feel it then close my eyes and wipe away the excess. This last step seems to really help me in getting rid of debris.

From there I pick up a lens. If its a fresh package I still do this as I found a warmed up contact is a lot easier for me to insert. The solution makes the lenses colder and with Reynauds my cold sensitivity is very high, and this took away an aspect of pain. I will not pretend contacts are painless but they are not agonizing and after they are in my eyes hurt less, so its worth it for me. I drop the lens into my palm on my left hand, aka the useless floppy arm, and clean it as I do on removal. I rinse it well then place it on the finger needed for the current eye. I then put eye drops into the cup of the lens after checking it by holding it very very very close to my eye for defects. This last part took some adapting as I still cannot really see it, so much as I se elight changes without my glasses. So I had to learn what cat hair, my hair, extra grime, too much skin oil, and tears look like via trial and error. This is also true of the dreaded inside out lens. The light refracts differently and you just have to learn. This part I still try for when I do it in the dark but its harder. I needed total darkness at first to succeed due to light sensitivity, and built my way to being able to do this with lights on.

Free of defects I then move my eye to the contact. Thinking of it this way means for me there is less fine motor involved. Others may need to approach it the other way around. The eye drops will sometimes spill or fold the lense but often I get it in on the first try. I close my eye then add more eye drops. You may not need as much ocular hydration but due to having thin eye tissues I have the worst case of dry eye my eye doctor has ever seen. This is a trait that the other people I know with Ehlers Danlos seem to share.

I keep that eye closed and repeat the process with my other eye. If my eye burns and eye drops do not solve it or hurts I remove the lens. There is a list of impossible things you will possibly be told by your contact lens specialist such as “Its impossible to put a contact in backwards.’ No, you can. So its important to remember if your contact hurts take it out. Sometimes I missed a cat hair, once it was torn, and once I had torn my eye the night before due to ye olde super fragile tissues and the lens being stuck to my eye from dryness. I thought I had hydrated it enough and was wrong.

I change the paper towel daily for this last bit before we tackle removal because that has to be adapted too. Rinse your lens case as needed for your solution. I had one where it was a no rub solution but the solution itself was too hard for me. No room for shaky hands or error, then because the peroxide base turned to pure water my eyes reacted and it hurt. You will during fitting be asked about these things, depending on your needs you may have a LOT of options or a narrow field of options for your solution. There were only two safe for me to even try and the first failed. I was lucky that BioTrue which is essentially tears works for me. It might be wrong for you. So clean eye case, leave it where its safe and can dry.
I may take my contacts out anywhere from four to eight hours later, I try to not go over that as personally, and again this may be different for you, my contacts start to get really dry about six hours in and I need epic amounts of drops. The when depends on how I feel. you will master your own eyeball sensations for it. My personal gauge is if my eyes still feel “tired” after eye drops. Often for me tired eyes, or the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

Removal:
This is for me much harder than insertion still. I am tired so my body is less coordinated. My lenses often do not want to budge. I go through more eye drops at the end of the day than any other time. This is due to the eyeball tear and being cautious. It also has prevented more tears, even in similar conditions of dryness. I was told to press on my lens and drag it with one hand while prying my eye open to get my lenses out. The method taught to me NEVER worked for me. What I do is I look to the side, then with one hand pin the contact against my eye lightly, if it does not squish a little I add more drops. From there I slide the lens towards my thumb adding a little more pressure. This is not poking my eye but a small amount of pressure and it is to me painless. Most of the time the lense pops right out and I can proceed with the ascribed cleaning regimen for my lenses. I then put eye drops in my naked eye, and close it. I always do this one handed, forgoing the hefting of lids to get past my lashes but do open my eyes as wide as I can. This is certainly possible in part due to my eye shape.

I hope this helps someone considering contacts. There is no “If I can do it anyone can,” but if I can do it a lot of other people surely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help. Don’t  be afraid to do it your way, there is no one way, there are just standards that you must keep in mind. The most important thing is cleanliness. the need to close them without needing to sleep is a sign of dry eyes. I personally apply drops on the hour, sometimes a few times in between.

ely can despite it feeling impossible. It is a skill like any other and takes practice. With that in mind do not expect success the first time, no one truly succeeds doing this their first try. Expect to adapt, expect sensory challenges and if you are disabled or not, don’t be afraid to ask for things like dimming the lights to get started. The people who are working with you are there to help.

Bodily Autonomy (Trigger Warning)

This Post Contains an Ableism trigger warning due to the forced steralization.

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.

Catnip: Lobo Anime and Comics

Lobo Anime and Comics is Located at : 1016 Juan Tabo Boulevard Northeast Albuquerque, NM 87112

Their Phone Number is: 505-332-0499 (May be updated if this is an old article)

What Makes them so Awesome?

I haven’t had such good customer service as with this shop. Anywhere. Ever. Not only is this one of only TWO accessible comic book stores, but it is one that has windows, treats their customers so well that it is impossible for me to bedrugde them my dollars that I can spend there, and they work with Comixology, a pick up service that lets me do shopping before I send either a carer or go in the manual chair (Gate and Paratransit access pending at the time of this writing).The other comic book store shall remain nameless because they don’t treat people well and their selection also pales in comparison.

They have a website that could use some professional touches, but over all isn’t so bad that it makes me not want to shop there. This is also where I go to see the Batmobile annually. This comic shop is one that I treasure. Not only do they announce their sales with about two weeks notice, sometimes more, but they throw events. This shop is where I met some of my fantastic artist friends like the ArtAssassin (You can and should google him, he’s a fantastic artist and a real sweetheart). Every year on Free Comic Book Day they give more than just comics. I came away from FCBD with a few things I had wanted but hadn’t been able to give in on because of sales, and they also enabled my purchase of a Batgirl statue which is my birthday present to me.

What makes them deserving of my rare praise for a shop of able bodied people? It isn’t their mom and pop status. It isn’t their customer service. It isn’t their accessibility. It’s what they do beyond those things. Every year they sell hot dogs on FCBD, with relish. Which could send me into anaphalactic shock. This year I decided to call in and let them know. Their accomodation of my need was something that went beyond reasonable, they pulled the hot dogs away from the lone ramp (not their fault) and also made sure that there was extra room on the side walk for manuevering a chair since last year my ogre of a scooter made things beyond difficult. Then to top it off the relish bottle stayed closed and as far from people as possible. I still had a little reaction this year but that is because of people eating the hot dogs and daring to breathe. Since I wouldn’t want them to suffocate I took my allergy pills before and during the event and was prepped with several epipens ready to stab me if I needed them.

It gets better. Since they use Comixology and I can pick things up, I often have to call them and ask them to wait a bit longer with my hold items and they always do. Today I called in and they let me know about a minor error on my order (in my favor no less) and this really means that my statue is THERE. Right now. I can hardly wait to get down there (possibly Friday) but this shop will hold my items until I can because I let them know I am having some transportation challenges. My goal once I have paratransit is a minimum monthly trip, because I want to support this shop. This means I will spend about five dollars minimum getting there and home and around five in the store. Okay so maybe two in the store on the Birds of Prey series but my goal is five! I mean a girl has to get her Oracle and Batman fix right? Plus every so often there is a Batman in the store!

For Albuquerque New Mexico there is really only one place for any true believer, nerd, geek, comic book fan, anime geek, or admirer of graphic novels to shop and that would be Lobo Anime and Comics!

(Trust me on this, their prices are also usually much lower than listings on the internet, there is no shipping, and with my rarely met standards being surpassed you know this is THE best shop in the state, possibly the entire multiverse.)

Pictures from Free Comic Book Day 2010 at Lobo Anime and Comics (yes that chair IS as uncomfortable as it looks):

SEX! SEX! SEX!

Right, I think that this post is about sex… (okay I KNOW it is about sex). Therefore everything is after the page break. If you aren’t comfortable reading about sex then go HAVE some. I do reference rape below, but there is no detail so I do not feel this needs a trigger warning in the actual post title. If I am wrong, drop me a comment and I WILL fix that.

Really? (Trigger Warning)

I am not sure I should be writing this. I may not hit publish but I am at least going to put these words down on my screen. It’s two in the morning, I am sitting on my shiny wheels and looking at ways to modify them (no structural mods, just accessories I can make like a little table and ways to add reflectors that would look really cool and would be all mine). I am trying to stop my brain enough so I can sleep.

I am upset. Not the upset of screaming or crying but upset and feeling a bit betrayed. Having a caregiver breech trust always makes me feel this way. I am tired of having caregivers do really stupid things that endanger me and get fired. Caregiver 1 had the most hours, almost all of them. Caregiver 2 had just enough hours to buy some food maybe and was in need of more personally so that she didn’t have to quiet this job and find another.

Caregiver 1 is no longer employed at all. Not with me, not with her other client. I did not choose that act but I knew my actions would have that end result. It was her choices that brought this upon her. Caregiver 2 now has all my hours. I think that her hard work in the small amount of time, picking up any hours I needed except once when she just couldn’t and not pressuring me to change my schedule for her needs is proof enough that she can handle a full week of working. I think I would be more upset without having had the back up plan anyway.

So what did Caregiver 1 do that was so bad? Lets start with reliability. If I have a caregiver I need them to show up around 12 so I can eat. By then I am really hungry but it’s safe to eat due to the queasy factor. Arriving between 12 and 1 is not really acceptable, arrive on time. She wasn’t late, because we moved the schedule for driving time between clients. Leaving early, such as after a half an hour of work, or not calling in to let ME decide if I should be exposed to whatever virus your kids have is also pretty bad. Still, those are things that I think happen due to humanity and it wasn’t a consistent issue with the sick kids. The office talked to her about the lateness and after we figured out the issue I just dealt with the challenge on my end.

There was more, but I didn’t know about it. You see she’s had people dying left and right in her family. Except… that she lied. There were two deaths. One she sent her family to the funeral to pick up the memorial sheet for proof and took the day off to play with her kids. I had no caregiver that day, as Caregiver number 2 hadn’t been hired on yet, and this was after a weekend alone. I thought that I had hallucenated this confession as it happened during my darkest day of no pain meds. I barely remember anything from then so I wrote it off. It is understandable for me to doubt myself when I am seeing people telling me the worst things all around, people I trust and know don’t actually think or do the things they said. My pain makes me vulnerable to a form of self doubt that is fairly insidious.

The second Death has apparently happened a few times, and finally for real. Finally is not the best word in this case but it is the only one that I can make sense with right now. Grandma has died three times in the last few months, for time off of work. All the office tells me is a death in the family, and since my mourning is for people and not the one who died as I think death is a good thing (a transition or rebirth) I don’t talk about it much. Few people are comforted by my beliefs and I don’t want to lie to them. I don’t want the awkward feelings there that occur when I know I screwed up and I just can’t help but make it worse. I’ve found offering true condolences is enough most of the time anyway. I don’t promise to do anything I can but I do mean sincerely I am sorry that they are feeling such loss. This time Grandma really died. Caregiver 1 started being “unable to work throught he pain” last week. Grandma was alive then but the office was told she had died. Last week I had more time with Caregiver 2. It was great, as even through the pain I felt safe, I knew my needs would be met and since Caregiver 2 is closer to my age we had some girl talk time when I needed mental distraction.

Today Caregiver 1 admitted all of this to me, and vented about family issues in regards to this death. I did try and stop her but she kept going and then repeated her confession from the time of the Paintrocity and furthered it by telling me she was going to find a new job, and quit. She then asked me to not TELL anyone. You see the flaw here?

Do I keep my mouth shut and endanger myself with someone who went from being VERY reliable when she wanted the job to disaffected and unable to meet my basic needs while waiting for her to find a job?

Nope.

I called the office after she left because she was too upset to work. I told her that next time she should just call in. Part of my challenge is that she brought me some very expensive food today, that I could eat. I felt as if she were trying to bribe me. You see she has four kids, is low income, and is then endangering her job with what I can only call abject stupidity. I also was told by her that she was under investigation for not doing her job with her other client, though she assured me she was not taking advantage of his inability to remember events or people. I don’t know if I believe her or not but that feeling of everything being in jeopardy was there again.

I felt fear, I felt anger, I felt betrayed, but most of all I feel confusion with little sparks of misplaced guilt. I did not say that I wanted her gone, but I did need to talk about what happened and I did have to decide, as there is no way that this woman can work with anyone who depends on a schedule. I am struggling with the in home care doctors because the doctor I am assigned to refuses to schedule me… with me. She keeps trying to show up arbitrarily without any set time. If I call in and ask for a time, they say she will call me. She does… two weeks later saying she’ll be here this afternoon.

Her perspective? Since I can’t get outside I have nothing to do.

I explained that not only do I have a schedule but I may have company. I also need to mentally prepare for the invasion of another person into my territory. I feel that this doctor doesn’t comprehend respect. Just because I have been trapped in my home for what feels like forever (closer to about 9 months or so) does not mean I do not deserve basic respect. She gets a date and time in advance with her doctor. Why don’t I? She’s been supposed to schedule a set monthly day with me. Instead she arbitrarily has tried to come once a WEEK, and I won’t let her in unless she does this my way.

My way takes maybe five minutes. She didn’t want to schedule the next time to see me after our first visit in person. Yes it was a good visit but I am so frustrated by this I am going to have to go to my previous doctor. At least with her I felt like I was respected as a person.

Today I did explain this again to the travelling doctor’s office. It is noted in my chart supposedly. I told the receptionist she needs to tell this person obviously. Amazingly I was able to schedule an appointment for Monday. This is two arbitrated appointments in a row that have occured. I have a graduation I am going to try and attend if the apartment manager fixes my gate in time on Friday, by arbitrating that she would be here at x time on Friday she arbitrated that I couldn’t go because SHE SAID SO.

I felt more anger over what felt like an invasion and an attempt to control me by the doctor than I did by the issues with the Caregiver. I suspect that is because the second caregiver readily took the hours, my time with the caregiver will be moved back to where I need it and no I will not ever accomodate another start time again, and I am still enjoying my wheels. When I was done being frustrated I went outside and sat staring at the sky or my rosebush and just existed for a moment.

I think I will publish this, but I really want to know why people think I am furniture to make them a buck. Yes, a caregiver gets paid but I am not furniture. I am a sentient being that will protect itself from invasion by “aliens”. I will not allow people to decree that I must let them in, I will not allow people to tell me they lied but most especially not when that lie could endanger me.

I am getting tired of the challenges. I just want one week of good things only. I know this won’t happen. That would be like expecting this wheelchair of mine to take away all my pain, or the medicine to take away my pain. Pain is a part of my existence. Nothing can fix the pain in my lower back. They can make it better though.

I am looking forward to something else by the by. Paratransit. I think it’s expensive and I am not sure I can afford four dollars to go and do things (two dollars each way) but I do want to sign up for our city’s paratransit service. I cannot ride the bus, nor can I sit outside waiting for a bus in the sun or snow. I can however get around this with paratransit. This means when I really want to do something like see a movie (rare but some I will pay to see in the theatre. Batman… Green Lantern… uh… uh.. yep that’s about it) or visit a friend (not likely since most live with stairs even if they use a wheelchair so phone works for me there) or…  well in general it is freedom. It also means I don’t have to worry about getting a car for my chair lift right this second. It means no gas money.. and with the cost of gas it’s probably about as expensive!

Plus Paratransit means I may be one step closer to going back to COLLEGE. I am not sure I ever will but I like the option. Oh and Paratransit means that I don’t have to worry about the bigoted and prejudiced bus drivers going past me for three hours while my skin blisters up, or stating that even with the law right infront of them I cannot bring my lovely Service Animal with me.

The biggest surprise about the wheelchair has been Sprite. I am sure she thinks I was going to run her over tonight since she is not afraid of the chair at all and didn’t move out of the middle of the floor. I stopped of course and honked my horn at her. She just stared at me and laid down. Luckily she comes when I call her. She doesn’t like going outside and I think it’s because the ramp feels really scary in this chair.

Some of that fear is my fear of heights. Some of this is how narrow the ramp is. It’s just as wide as my door way. So is the chair. I already put in a written request that the ramp is widened. I am going to add a request to this that there is a small lip placed down so that I can go into the dirt of my yard. The ridge is just too high.

I know today was stressful but there was more good than bad. I also had a friend come over with her nephew who was really adorable. She was nervous about baby sitting him. He’s about a year and a half old. She was surprised to find I actually have some baby skills. His parents wanted him to meet someone in a wheelchair because they are big on intersectionality. D as the young man shall be called is a person of color but is also mixed race.

He is REALLY smart too. At first he was a bit scared of the chair, not a lot but this chair is pretty big. He had a toy car with him and I watched as he studied the car wheels, then my wheels. He frowned, and asked questions with his body language. I could see them in the same way that I see Sprite’s words most of the time. So I talked to him, and explained my chair. He forgot his worry about the chair being something new once he watched me adjust the tilt and recline for my comfort. He didn’t once try and push the buttons on my chair but he walked around it a bit and then gave a nod.

I let him sit on the scooter and gave him some ham. His auntie was worried about his making a mess but that’s what a paper plate is for. He took the key out of the scooter and studied it, found out Velcro makes an awesome scriiiiitch sound when you pull it apart. He figured out how to revelcro the keyfob that I use for the scooter keys. It holds things, so I used to use it for my copy of the ADA service animal law. He then put the key back into the scooter, or tried. The key is a bit difficult to manage for an able bodied adult. He at least balanced it on there.

I had fun. I found I miss my niece and nephew a bit. His aunt learned about misdirection with kids, and that a bit of a mess is okay as long as you clean it up at the end. Looking at my house now you would never know about the chips and ham that ended up everywhere. My home also remained gluten free even with a young person here so I am contented.

He did manage to gross me out a bit when he brought me a cockroach and handed it to me. My fear of cockroaches meant I ended up shrieking and flinging it away. We found it, it is no longer with us, and he helped us find out sprite’s been piling them up half alive in a corner of the bathroom that rarely gets attention. (Behind the toilet.) Apparently they chase good  but taste bad. Blech.

As far as any worries about why I have roaches, it is not a filth issue but it is a city wide challenge. In my city if you have sewers you have roaches. Even the rich people with 3 million dollar homes have roaches here. I shouldn’t find this pleasing but I so do. I haven’t had so many roaches as in this house, I admit that but most of the time they are crawling out of the drain or something. Not much we can do but as long as no babies or kitties try and feed them to me I am happy. (Why do they always want me to EAT the roaches?)

So really, good and bad… happens.

Afterburn (Trigger Warning)

I have had my pain meds for almost a week. I still can feel the after image of the pain, it’s tracking me like some sort of monster. In my mind there is a shadow, and if I look behind there feels a chance to see the negative image of my being drawn out by the pain. The monster is created by the black hole of pain, that inescapable pain that takes lives. In every motion I make there is the risk that I will hurt like that again. The fear is enough to make me hesitate. This is the after burn. This is the concequence.

It comes up when I want to do something such as spending money for a keyboard that isn’t broken, or saving for a computer that isn’t dying a slow and icky death. My keyboard has had a short in the usb wire for a good while. I found out about it during my time with the Paintrocity. I don’t use wireless keyboards for two reasons, batteries and also I tend to break those a lot faster. This keyboard has actually lasted for years and through several computers, it is a veteran in my typo wars. It’s been packed away for moves from the first time I lived on my own through this permanent time.

This keyboard has been dropped, run over by the scooter, and I wonder if objects feel each time I “hurt” it. Never on purpose because it is a life line. Perhaps it is this attachment that makes me hesitate but I think not. I think it is just having the pain again. The last time I felt this way was not the last time that my meds were removed from my life. With that I was already feeling pain and things were different due to abuse. That was another type of pain, even though it included bodily anguish and mental anguish. There is no comparison. This is NOT the worst pain of my life. It is merely the current pain.

Afterburn pain doesn’t go away with a pill. I know a large part of it is mental, some of it is a symptom of lost ability from having to stay still so that I didn’t give in to the urge to just scream. Some of it is rebuilding the barrier between my pain and my brain. I don’t know if this is a bad thing or not. I think with the new wheels it is giving me a bit of perspective on what my body benefits most from about the chair. That would definately be the adjustability of my body without my having to twist and shift. So far I have had a dramatic relief in all pain except my lower back where the actual spinal injury is. That pain won’t go away ever, I learned this a long time ago.

Still, with the Paintrocity I am afraid to explore. I am almost using my too narrow gate as an excuse. Almost. I fear more not having my shiny new wheels and if I force through the gate I may damage the controller wire or something else, therefore I have to be patient and wait for the manager to take the gate off it’s hinges, remove two blocks of wood and reattach it on the other side so that it swings fully open and doesn’t murder my rose bush. I have beautiful yellow roses in bloom.

The Paintrocity has me afraid to do anything. Eating? No. Why? It will make me digest and digestion hurt so badly without the medication. Breathing? I still catch myself starting to hold my breath because the injury in my back effects my diaphragm. Singing? I won’t let myself stop but that puts my lower back into a form of torture. The singing brings up more mental challenges with this. Even laying in bed is unpleasant now. It now reminds me of being trapped in my home.

I am going to call the manager today and let him know I need the gate fixed by Friday. Rather short notice occured but I have a graduation to attend, and I want to be there. Parts of me are afraid. This would be my first time in a huge crowd with these wheels but, these wheels have immaculate control, they turn in tight spaces, and oh yeah, I am taller. The seat of this chair is about four inches higher, then if I tilt it back I feel like some sort of six foot tall seated person.

The after burn has a very visceral image in my mind. It belongs in a horror movie. I become a negative image. It is my own reverse flash come to destroy my life, to devalue everything I love. The paintrocity even tried to remove my ability to hold Sprite. Yesterday was the first time since the pain meds return when we could truly lay together for naptime and both be comfortable. She had her head on my shoulder, so whenever I would shift a bit or wake up and opened my eyes I could see her curled up against me, using me as a pillow fast asleep. The adorableness helped dispell some of my fear of sleeping.

I think that was the worst part of the latest experience with no shelter from my pain. I did not go through what I thought of as withdrawals but instead into spirals of deeper pain. Sleep became a place of more nightmare than not. For a long time the only nightmares I had were related to the murder that I witnessed. Even in the pain those went away because I spoke up. The dreams consisted mostly of my parents relaying how much they cared for me. That is a very bad thing with parents like mine. The paintrocity also made me more vulnerable to talking with anyone who is a “leech”. I have a few in my life. I only answered the phone for one once.

Even as I write this I am left with a quaking feeling in my gut. My mother admitted she reads my blog. Well during my time of pain when I wanted to kill myself I wrote a letter detailing all of the things that made me angry about wanting to die. I understood still and reminded myself that the pain was escapable if I trusted my service coordinator and advocate. I just had to wait a little longer. Just a little more time. Those words were torture. I just wanted to slit my wrists. I considered eating some of the non pain medications en masse to see if I would die. I considered dragging myself to the street. The plan ended there because that was NOT happening. I had to talk myself out of it, and I found myself angry at wanting to die. I found myself angrier that the voice in my head telling me to die sounded like my mother or my father always. It was never my internal voice.

Some of the things I wrote I will never write about here, some I will. I determined long ago that this is my blog, this is my space, and my parents are far from good but they are also far from the only abusive parents in the world. For my entire life I have thought of my mother as a victim. That stopped. This was a benefit of the paintrocity. Anyone that could let their children be abused and excuses it as it was better for them than being without a father, or lets them take the beating so that they don’t have to IS an abuser. She may not have dirtied her hands as often as Steve (that’s my biological cretin of a father’s name by the way) but she still did abuse. There were words, moments, and even a few times she hit me because she didn’t like what I was feeling. I don’t know that I can forgive her for what she has done. I don’t know that I will ever visit the family again. My baby sister is old enough now that she is a fully formed adult. If she needs me she can call. I don’t have to endure an abusive grandmother, an abusie mother, and her worst drug dealer ever husband

I finally understand why after calling her or her calling me I feel so horrible. She’s like her mother. I don’t know if she will read this post but I will never say those words outloud to  her. Every time she told me I was just like my father it cut to the soul. The paintrocity helped me to relive those moments.

I still have a lack of good color to my skin, I still have these dark blue circles under my eyes. I always have them when I don’t feel quite right. The darker and bigger those circles the worse the pain is. I felt for a while during the pain that my face had vanished under them. Both my caregivers were concerned more than once about how grey I had become. I looked like a zombie. I was a zombie lost to the pain. They made me eat. They made me drink. I did not want to. This was something I asked of them in preparation and both caregivers worked with me admirably. There were days when I just growled at them. They still worked, they still did all that we needed. There was nothing that either did that made pain worse either. That is a challenge.

My face has always betrayed how much I hurt. When I saw it happening in the mirror or it was commented on I felt naked, and I expected pain in the form of abuse or manipulation. Every other time someone else has added to those burdens. I trust that in the moments when everything melted into PTSD land or I was hallucenating very bad things that neither did anything wrong. If they were going to they would do it regardless of coherency. My experience with abusers has also told me they would want me to remember, so that I would know that they had power over me. Disconcerting? Absolutely.

I know eventually I will defeat my formless foe, the Paintrocity. I will get back to where I feel almost carefree. I have never quite managed carefree, but I have come close. Now that I have mobility restored I may attain actual carefree during some moments. I have goals, I have dreams, and I have begun to live already. Like a thirsting plant that just needed water. Sprite has taken to the chair as well. In less than a day she stopped hiding for most of my jaunts around the living room for food or water. She didn’t like going outside on the leash but after that she started jumping up onto my lap, she found out she can’t sit on my headrest and she’s sitting on the table waiting for me to finish typing.

My pain is lessened further because I cut my hair off. I am now short hair bearer. I like the style, and it looks good one me. (No style I have ever had has been out and out bad except the time I shaved my head.) It feels good. I am sending the grocery bag full of hair (and I do mean full, I was apparently very hairy) to the people gathering hair for the Oil Spills. Because the hair is dyed it was not appropriate for Locks of Love but now I know there is another charity that can use my hair for good.

I do not yet know what it will take to beat the Paintrocity except for living. I do know that I do not fear dying anymore. I don’t think I qualify as suicidal. Part of this is that I had reached my goal of not wanting to kill myself daily before my pain meds were denied by the insurance, and I managed to make it until the last four days before I wanted to die. Even when I wanted to I could use the truth over the pain induced self hate and lies in order to not give up or in. I had been living all along. That sensation of waiting to live that was torture is at an end.

Now I just need my corset and I have it all.

One of Those Days…

Do you ever have one day of awesome after months of suck? Today is that day. I have pain meds. I have my new wheelchair. As I write this I am reclined, my feet are up because they started to throb, and I didn’t have to go to bed. This has me giddy. I must admit my first impulse with my new chair (which has yet to be named but the buttwheels WILL be named) was to go on the bus, outside, etc.

I didn’t. I want to of course and will but not all at once. I am doing the twenty four hour charge. I did check my mail. First I have to wait for my gate to be fixed. It needs to be wider so I don’t trash my chair trying to get out. I also am going to practice driving a bit because the experience is differrent. I am tired still, I’ve been tired since… forever? I just am excited. Way way too excited. Tomorrow Sprite’s going to get to go outside!

I am also going to sell the Scooter. I got it running again, it has new battery, and I am going to retape the light and such. My goal is to get enough together to buy a new computer. Mine is dying. At least four times a day I now get the black screen of death. Still nothing can burst my bubble in regards to this chair.

I am going to of course write about less sunshine and roses things as always but the best part of my chair? It has a CLOCK in the steering device! No more fumbling for me to find one when needed. Wooh.

Model Behavior and Me (Trigger warning)

I was once a model. It was super right? Right? Nope. It was horrible. I was deemed a plus sized model yet as I look at a photograph taken at that same time I see that I,  having dyed my hair to be LESS red for this opportunity, was stunning. I actually still am of course in a more mature way. Sometimes I have to remind myself that I have done the modeling, and really existed in that body. Before I knew my body was a betrayer.

This was before the giant mole by my nose was removed and turned out to not be a mole. This was before I had learned food was my friend. This was long ago. I look at this picture though and I see more pain emotionally than I face now. Yes I am in pain as I write this but it is purely physical, the emotional pain is sort of numbed tonight. In that picture my jaw is dislocated so that I could escape my double chin. In my post about jaw dislocations Amanda made some comments about her own jaw issues and I realized, I have been unhinging my jaw for years. I didn’t even register it. I  just DO it.

When I was a model, work was horrible. Not only was I exhausted but I was shamed if I ate before work. I couldn’t lie either, they ask and I would say yes. The other models told me at times how AWFUL I was because I had no issue with a donut. I wasn’t aware of my allergies yet, in fact I would eat what I wanted which usually turned out to be meat anyway. I was always hungry however, and started to give in to the shaming, starving my body more and more. I’ll just eat less of this, I’ll just miss this one meal. This was dangerous territory.

It seems odd to be that people DREAM of having this job. The clothing, if it does not fit is forced to, even if it hurts. You are always warped out of shape. My breasts were almost always shopped to look less like real breasts. The shape of a real breast is forbidden in modelling. I also was told more than once at a call in that it was a shame my bosom was real and that it was the fault of my breasts that my belly was not perfectly flat. No one’s is before photoshop, a six pack is not flat unless you paint it on after all.

I was told too that my red hair was just wrong for me. I prefer it. Even in pictures where I am not looking my best I prefer that hair to dyed. Right now I am mourning it. I realize it may be three years or more before all traces of this black dye are gone.

Here is a bit of a time stream, and yes one of these pictures has a lot of cleavage. You can also watch my jaw line and you can see when I am and am not dislocating my jaw. (For those of you wondering, the headband is my fangirlism for Naruto).

Right here you can see the jaw issue, It’s exhausting to hold it in a specific place and it slipped back some on the bottom.

In all of the above pictures my hair is red. It changes how I feel. I feel good in all of those pictures. I do not feel good in others where my hair was stripped of color. The red hair for me is a flag of identity. I am a redhead, I am gorgeous, I have glowing skin. It doesn’t glow with darker hair nearly as much. I should mention this is my favorite wedding picture and it’s candid. The photographer was supposed to be taking pictures of my niece (she of course did but she snapped this too).

I find it interesting in some ways that when modelling I was told my skin wasn’t clear enough, wasn’t good enough. My skin is actually WORSE now but it looks fine to me. I  have a surgical scar that is rarely visible but there splitting my face in half. It’s like Two Face but without the cliche and inaccurate portrayal of mental health disorders. The wedding photograph is actually of the side where the surgery was done and my face was peeled off due to a tumor. I felt so gorgeous. Sprite was a bit cranky but she always is when I am upright too long.

I was a sex symbol even if in a small way. Modelling by default means you must be sexy and gorgeous unless the ad campaign focuses on the ugly or weird. I never did any of those, though that was what I applied for. I was deemed too pretty to be ugly and weird. I remember feeling so out of place because this notion contrasted with my previous experience of being deemed too ugly and weird for society, love, food, or any semblance of an education. It shook me to my core, and I began to wonder, what if being a model meant I was about to be raped again. I was so afraid during that time.

I do not have any pictures of me modelling now, they were lost via illness, homelessness, and abuse. In some of the pictures I wore a bathing suit, and frolicked with other girls. I remember asking a model about being the only asian around and she commented that was how she got work. Being the only one around. She had to be the palest, the prettiest and the most non Asian looking in the group. I noticed too in every ad we were in even I was photoshopped to be whiter. I expected thinner but, I am so very white. There are times when I had to have reshoots done because my skin reflected the light too much. Most of my home photos have elements of this. My own photosensitivity likely plays a part.

I remember some of the lies about food we were told, I remember girls crying. I remember always feeling in a daze from pain and working extra hard to not be lazy because pain was laziness. I remember when I was caught eating a hamburger walking in to a shoot and the photographer screamed, “We can see the burger in your stomach.” I remember too, a sense of relief when I didn’t have to model anymore. When I was done with it.

I didn’t model for long, about a year. I did model clothing for free first, and then there were ads for more clothing. I was always reminded that in every photo I must be an object, I must not be a person. A model is a hanger for the clothing and must do nothing to distract from it. Another reason my hair was de-redded was this claim. Red hair makes it harder to match clothing. Since I dislike pink, and never actually had to wear colors that would’ve clashed with my hair this seems bogus to me.

I am left to wonder, was I ever so much the ugly duckling? I have as I have aged eschewed more and more of society and it’s lies and pain. I seek outsider groups. I seek outsiders. I seek my people. I no longer feel the urge for fame just fortune, and really fortune for me is more having enough to eat, and not having to be afraid of losing my tiny income should a glitch happen in a computer. I hold my breath at times and pray.

Modeling did help me to realize that any rape I endured at the hands of the four “men” who did rape me was not because of looks, and that rape is not about sex. In fact when I was raped each time I was never near my finest appearance. I was a minor child, I was the fat kid who was in so much pain and so angry she was cutting her body apart, and I was a prisoner in my home being starved in the hopes that I would start looking like a minor child. None of this had to do with appearance. It had to do with my being vulnerable, it had to do with my being “out of control”, it had to do with my bisexuality, it had to do with my not conforming to the actions a “wife should” and instead seeking things that satisfied me, effected society and would open doors for other people with disabilities.

Modeling challenged my supposed bulimia. I am still not positive this was a misdiagnosis or was a correct one as a child. I think it was both. I do know that I have not lost a battle with it except during attacks of PTSD since I was 17.  The urge to purge is almost non existant and when it comes, it is again with PTSD. Even then I can usually stop myself from obeying the ghosts of fathers and failures past.

Modeling is not something I would ever expose a minor child to. I think with the societal body dysmorphia that is considered normal we need to be hyperactive about who models, and we need to protect our children from the dangers of photoshop and unrealistic beauty. I rememebr not even recognizing myself in a few ads. Most of them I couldn’t quite spot the Kat.

Modeling helped me find who I am, in the worst possible ways. I denied for years that I was beautiful during that time. I was not the token fat chick in so much as I was not fat. I was actually amid the thinner girls there. I was deemed a plus size model because I thought I was fat. I denied my own wants for my body. In the next few years I will obtain contacts, I will reclaim the red to my hair even if the follicles no longer add it, and I will do a sexy photoshoot for me. No photoshopping, just my body as it is. I don’t plan to shave my legs for this photoshoot either. I will model my inside with my outside.

Now you have it, my dirty little secret. I took part in mass media!

UPDATE: Forgot something, yes I got paler over time. The pictures in the middle have me with what passes for a “tan” in the summer. I haven’t let myself get that much sun in years. The only pictures with make up beyond lipstick are the wedding photo and the first model age photo.

On Bended Knee (Trigger Warning)

Something that I think most able bodied people take for granted is motion. After all they may get sore muscles the next day but, a little sleep and they have this thing called energy (huh? What’s that?) and their sore usually goes away. They may also need a massage or just secretly want an excuse for one.My body is not made for movement. From a professional dancer/ Model this seems a bit funny to say.

It sounds vain as hell but I was VERY good at the dancing I did. I also had to work at it twice as hard as those around me and started dancing tired. I thought this was normal. Being raised to never question the whys of things, I had just begun. After all if you ask why and are going to be forced into prostitution or homelessness or both? It’s just not worth it to question things. I remember my first audition. I am not a formally trained dancer. I watched people and mimicked. The person who watched us commented on my stiffness. I had to learn to relax my body and flow.

I never actually did this. I learned how to create the illusion of relaxation. For as long as I can remember relaxing causes intensive pain. I remember trying to not cry out, because tears meant my father would come and beat us until we couldn’t cry. The first memory that comes to mind is last night, my mental chronology is working backwards. So the last one is when I was three. I have my most clear childhood memories at three. Three predates the “worst” abuses and post dates a lot of trying to learn mobility and the basic survival skills of living with someone who wanted to murder you for existing.

I had been carrying something heavy, something no one else seemed to ache with when they did. The thought memories are vague pictures of milk jugs and boxes. I was so tired that the sun was still up and I could hear my siblings playing but I just needed to lay down. I crawled under the bed with my dog friend Muttlee and tried to get comfortable.

Why under the bed? If I was caught sleeping then I would be hurt worse. I remember the dog friend shifting and making room for my small body. She licked my face and I squeaked at her, as I still squeak at Sprite when I lay down on my bed and she wants attention or wants to help me feel better but I am in that realm of suffocating pain. They both back down and don’t leave me.

I take a deep breath, and it hurts. I lay flat, and stare at the underside of my mattress, the dimmed light of my small space comforting. I hadn’t been tortured with the wool blankets in summer in the closet yet. Small spaces were my friend because HE couldn’t find me. What strikes me most about this memory is I start trying to relax. I even remember why. My Aunt Nan had been talking to my mother about how important this Relax thing was and how it was a letting go.

I started at my toes and let the muscles go. By the time I got to my knees I was in tears. I didn’t stop. I relaxed all my muscles consciously. The little pains (okay really horrible bad pains) that I have felt my entire life upon laying down? This beat them. I screamed. The dog growled and bit me in fear. Even the dog knew to not make sounds. A part of me always believed she was taking the fall for me. My muscles unlaxed and I climbed out from under the bed bleeding, afraid, and aware that there was a precipice of pain that even my father could not inflict.

This lead to my first time running away, while toting a boulder. This lead to my ability to survive in some ways. Most of the memories I  have of torture, such as my punishment for screaming itself I remember thinking “This hurts and I want to cry but you can’t hurt me as badly as I can.” I didn’t know what it meant for a long time. The pain in the relaxation memory was so bad that it was pushed away. My subconscious never let it go and I didn’t try to relax again until I was a dancer and hurt so badly after working that I went for a massage.

I know torture first hand. A lot of the time people make jokes about torture, not necessarily in the Guantanimo Bay sort of way, but often yes. I have been waterboarded. Usually if the toilet wasn’t flushed my father would waterboard his own children. He was the one who didn’t flush it. One of us would eventually take credit, and there would be blood. Now a toilet that is not pristine can send me into panic where I feel like I am drowning.

I have had my toenails torn out. Flat nose pliers work better than needle nose for that. I may someday take a picture of my feet. My toes, if I am not standing, curl inward because of the years of infection and damage to the muscles. The pain  in my feet from dancing? It wasn’t real pain as far as I knew. Real pain was what daddy did.

Most of the scars I should have don’t show now that I avoid things that inflame or damage my skin. You can’t see the stab wounds. Most people when they see the strange little round scars don’t know those are bullet holes in my skin. When people joke about gangrene (I am not sure how that idea is funny) I usually tell them, “Uh that’s not funny. I’ve had gangrene four times.” The modern era of medicine saved my feet.

Oh I know pain. Right now the cold snow on this supposedly Spring day, or at least I think it is supposed to be Spring with a capitol S… the pain matches the moments when I pulled out my own toenails. You see, I thought that trimming my toenails was the same thing my father did.

This post is actually about motion however. All of these things have effected my ability to move. Disease, Disorder, Syndrome, Torture, Abuse, and mostly Pain. My pain is omnipresent. I have been in pain since birth. My pain effected my friendships, Schoolwork, and has effected every social interaction. In fact, my ability to walk would be greater if there wasn’t a pain issue.

The wheelchair assessment opened some cans of worms medically and mentally. The idea that I would use my feet when I can is no longer welcomed. I knew it was painful but the pain means don’t apparently. I have never really bent my knees except when dancing. In all my memories good and bad my knees don’t bend. My sister did and hers dislocated. My body is so much more flexible that in order to walk I tightened all my muscles and I heave my body forward pitching to one side.

Totter may be a word. I think of an object that is off balance on a table or something, it goes side to side before it either falls over or steadies itself again. It moves when it rocks. This is how I have walked for my entire life. The pain in my hips and their chronic dislocations has an answer. Walking. If you don’t use the joints properly they will be damaged.

I have little flicker memories, pictures with emotional impressions really, of learning to walk. Most of them come with terror. Anger. Rage. Pain. There it is again. Pain. I can hear my mother’s voice as she cries. “Come on, you can do it. Please walk? If you don’t walk soon he’ll hurt you.” This ignores that he already had hurt us both for years. Those same words can be put on many memories, my ability to talk was born out of terror, my ability to read chapter books like little women came at gun point. Basic milestones that I would probably have been more delayed on, I did them to survive.

I am left to wonder how any doctor could see me walk for my lifetime and not comment on it. Yes, when I was younger it was worse, then when I tried to blend in and during my time of Sports until the end of the Dancing phase I faked it  better, but if you only bend your knees when sitting or in bed because you are in the fetal position crying as you fold up like a rag doll… shouldn’t they notice?

I have been institutionalized, hospitalized, psychiatrized, and called the patient for so much of my life that sometimes that is the name I hear in my head. Why then is it a quest for a doctor to be attentive enough to take note that there is some greater wrong? Medicine cannot be something you treat like a retail job! Medicine must be treated like it is something where every moment can save a life.

I don’t hold my shoulders “right” either. I actually didn’t stand once for this physical therapy evaluation. I moved my legs while sitting and that was enough to startled this woman. Apparently people with my level of flexibility almost never learn to walk. My life time of shoes that even when the doctor’s cronies measure them they do not fit, my life time of aches that I thought everyone had until it was too late, my life time of falls, wobbling tiredness, and sheer frustration that I couldn’t be as fast as everyone else has answers.

Still, when every child I ever knew noticed I moved funny and I had nicknames from “The Robot” on to “Stiff Whore” on to “The Crunchbacked Hunchback”… when I was stigmatized and tormented until the moment of my first self awareness as Woman and often… so very often… after? Why the hell can a doctor not notice that I do not even bend my knees on their stupid tables. I have spent my life running, jumping, plieing, twisting, turning, walking, and shifting but never bending my knees without falling.

It actually takes a conscious thought to bend my knee even sitting. A part of this is life long and some is exaggerated by my spinal cord injury. It takes more than one try usually for the signals to get from my brain to my legs. Then it takes several tries for my body to make the movement happen. It’s a process. It has always taken more time for me to get my leg to go forward. I have to consciously imagine it.

The first time I made snow angels that I can recall, not the actual first time as there are flickers and age disparities in the collage of memory but the first time I think I wanted to do so was also the first time my body was good for something because of the stiffness. I had to walk to school in the snow. It was a snow delay, and I actually never made it there. Another random moment with a random stranger who by the standards of my family I guess I should have feared?

I had sat down on a rock outside some house and was crying because I hurt and had fallen. The trashman stopped. I wish I remembered his name. I asked, I didn’t call him the trashman but the memory is buried under so much rubble. This was the first time I was allowed out alone after my first time in an institution and I was screwing it up. I told him so. He didn’t react like I was a monster. My own mother has just begun to treat me as a person.

This man was a mexican. From Mexico. He and I talked about how his father and mother had brought him illegally across the border when he was a small child. He had legally applied for citizenship as an adult was was proud of it. His first winter, they had made snow angels to celebrate. They were too poor for anything else. He asked if I could make one and I burst into tears again, “I always screw them up.”

He asked how. I couldn’t make a snow angel without smudging the wings or body or leaving foot prints. He laughed, not at me but the laugh of an adult who cares. I don’t know why he cared. “See that big pile of snow? Go make a snow angel, I will help you get up without ruining it. At first I was crying while making the snow angel. The snow made it’s crunching sound, I made mine. He made a face when I did. My knees crunched, my hips popped, my shoulders ground. It didn’t hurt, it was just the sounds of motion. He asked if I was okay each time. I thought he was insane.

When my angel was satisfactorily angel like he said, “Bend your knees.” I did, then he said get up. I didn’t. I couldn’t. Instead of yelling at me, as I already expected he pondered the situation and said, “You know the problem with your angel is … where are her feet? Angels have feet and legs right?”So I put my legs out and rolled up until I had my feet. He helped me balance. I hopped away from the angel and my angel was perfect in my eyes. “For you, the perfect angel is going to always be the most unique.”

He had to get back to work, and I spent the rest of the day making snow angels. I have thought of that moment often, usually when winter induces pain levels that make me squeak and cry with every movement of my arms and hands. I am squeaking a lot right now. It stands out as one of those memories where adaptation occurred or I was treated as a person. Those were so very rare until I was 21. At the age of 21 I began to pursue what I wanted.

My dancing career was short. A year at most. I remember always worrying about making it through the next audition. Would I be strong enough? I remember throwing up from pain. I remember too just how cut throat the world of Dance can be. I don’t dance in my wheelchair. I can, I think, but I no longer need to dance. I need to simply allow my body the stillness it requires.

I will think about every time I have bent my knees, I have them bent right now, because this keeps me from falling off of my chair. I will think on every footstep and the pain. A part of me is angry at my mother over this. That part of me needs to heal. A part of me is afraid. A part of me rages at a dead man. Mostly however, I feel relief. I am never going to have to do the basic things that my ability level has never matched. I don’t know how I blended as a dancer, and perhaps it was my unique style that let me work. I am never going to be able to walk normally and it turns out, it was unlikely I ever could walk from the moment of birth. My disability has always been here, now I just need to learn to respect my body and what it needs.