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.

Continue reading

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):

Kat Fury with Iron Man beside her and another Iron Man Behind her. The first iron man is very adorable and is around four years old. Kat Fury and Batman infront of the 1960s Batmobile. Batman has his cape stretched out behind both people.

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.

Continue reading

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.

  • Polls

  • Ye Olde Archives of Fury

  • Top Rated

  • Top Clicks

    • None