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.

The Losers Movie Review

The Losers Review (Spoilers after the jump)

The Cast of the Losers Zoey Saldana, Chris Evans, Idris Elba, Columbus Short, Oscar Jaeneda

Right, first off I don’t think I can review this movie without some Spoilers. Flat out though, I am trying to do this without comparing it to the comic. Over all it was easy since it’s been forever since I watched the film.

This movie has a strong opening, it gets you emotionally invested quickly. You also get a feel for about how gimmicky this film is going to be. I want to say this movie has a bit of Rambo, Die Hard, and Iron Man mixed in. (Just a hint on the tech for Iron Man).

The cast is strong, though I have some concerns about the health of the females involved. I don’t think anyone should ever be so thin that their ribs show and Zoey Saldana appears to be being effected by the unattainable perfection of Hollywood. I don’t know if any woman could work in the Industry without the pressures, since I felt them when I tried. That said she acts rather well, and is mostly believable though her character is written most transparently and is a token female.

This movie tries to be edgy but falls mostly into the realm of clichés. These clichés involve a villain with scarring, a black villain/traitor with scarring, tokenism with women, fat bashing, a hint of homophobia though far less than I expected for a movie, and then every action cliché I can think of from explosions to running around with guns held awkwardly.

One issue on the suspension of disbelief for me is running and climbing with bullets in you. Shock happens even to the well-trained. One actor handled the acting of being shot better than the other. I won’t say which because I don’t want to give away everything in this movie. Neither did a superb job.

There were some great one liners in the film but they did not detract from some pretty tight writing. The ending had some issues, though not as many as a non comic book movie. I think that this is a pretty good film. I didn’t feel it wasted my time.

I just wish that there was more creativity. My favorite scene in the comic book was filmed to perfection yet I was busy being distracted by counting the ways that the writers and film makers are disconnecting their audience via cliches and isms. Though this film had a large cast of people of color, all but one and a half of them were VILLAINS. There was also a large need for white man to rescue brown people.

Another white hero. Yawn. The villain with the scarring also is an openly misogynistic (censored) who manages to fat bash, abuse women with non challance that is never addressed, and his many evils are so blatant that they include racism and disablism. He goes out of his way to make everyone around him feel like shit. This may be great for a villain but I felt it was heavy-handed and again it made me uncomfortable about watching this film.
Spoilers begin here:
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Mourning

After writing my post earlier I left some voicemails with handy men, my friend M said he will pay for it so I can get my bed. I am tired, more so now but as I felt like I was going to scream and couldn’t find peace in my heart I needed to move. I felt pulled, and so remembering I had a ramp decided to risk the scooter breaking down leaving me out in the world. I took my cellphone, my keys, and left the cat at home. I went the way of the pulling sensation, and wound up outside of a beautiful temple. This Buddhist temple is just a block from my apartment. I sat outside and looked at the Lotus blossoms and butterflies, and realized, I belonged. I find that Buddhism has helped me keep calm and not give in to the darkness that pain makes so tempting. Buddhism is not a religion but a path and a way of living, as I was taught. It is compatible with my beliefs.

I sat outside for a half an hour before I decided to go in, and the Abott himself greeted me. He asked me why my heart ached and we talked. I had secretly hoped he would give me permission to continue my relationship with my mother but, “The poison of the heart can poison the soul. Such a pain as you endure was preventable. The poison of the heart will spread. You must remember that your heart is yours.” It wasn’t a way of saying to reject her but a reminder that it is my life and I must come first. Something I knew all along.

I was asked to please come again, as often as I wish, and to bring the cat next time. I ventured out and found the peace that I couldn’t quite grasp. I charged the scooter again while we talked, and decided to risk Walmart. Walmart is a half an hour with these batteries and once there I had to park and charge again. I had another encouter with englightenment. A world war two veteran saw my unique chair and decided to ask if I knew how to get one. I could see his pain, he proudly told me he forgot how old he was and we laughed a bit. I gave him guidance on how to get his wheelchair, as for any of us to admit we need the help of a chair is hard. He told me I reminded him of someone he met long ago in the war. My face, my eyes, but he commented that she had red hair. I didn’t tell him my natural hair is red, and felt a longing for it again. This is twice that I have longed for my hair back at the vibrancy of it’s nature. The black lets me feel safe and I know I look beautiful either way. It is merely difficult. She was a nurse, and he was injured. She was injured as well but hid it so she could continue to serve, her time with him was spent building a trust and she taught him to understand that the enemy wasn’t seeing us as we saw ourselves. It was an interesting story, frightening in some ways but he found comfort in me, and I in him.

I did some shopping, I got a copy of the key to the gate so that my caregiver can actually get in (oops) and a pair of padlocks for my gate. My batteries held so I looked in a few stores and found many things I need, so I took pictures of them with their prices. I bought the nail trimmer that I desperately had to get William, and found two jacket style harnesses one pink and one black on clearance. I sprang for both, and they rang up even cheaper than they were marked. I also got a bit of halloween decore, a little sign that was three dollars and made my entire day. “Wicked Wanda’s Witch Shoppe.” It’s green and a light orange. I named the stuffed witch I got at the dollar store Wanda and she is also green and orange. It’s too perfect to deny. So far this is also my most expensive decoration!

I feel good, if sore. The side walk only has two in accessible areas, one on each side of the road between the shopping center with a grocery store that carries gluten free food, three discount stores, and has everything I could need or want accessibly. I even found the curtains I want for the price I can afford.

I did notice a difference in this neighborhood, normally when I go out I feel invisible and in danger. This time drivers made sure that I knew they were there, and that they saw me. One man stopped when the scooter almost died on the way home and asked if I was alright, since it was going so darned slow. He watched me to the gate of the complex so that I could get home. Normally I wouldn’t want that but I cut it close because I had to backtrack for the gatekeys. Oh I also got some gummy bears. I just needed a small treat and my entire day became such.

Thank you all for supporting me, it gives me strength I cannot find with in myself. I may fear, I may mourn, but I will never surrender. This neighborhood seems very much handicapped friendly, as I found special access points for wheelchairs in areas where it may be more dangerous for a chair to be in the street or normal foot traffic. I’ve never even heard of these things! I dreamed of them. I know better ways around some of the rough spots for next time, though I will wait until the scooter is repaired, I shouldn’t have pushed it. It was stupid, and a mistake. I also feel way better for it. It seems doing what I want is a rarity, and that must change.

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