You know it isn’t going to be a good day when you find out that God is your stalker. At least that’s what this handwritten letter delivered here tells me: That God wants me back. Since I don’t give out my address, getting a hand written letter from F. Ottosen telling me that if I come back (to God, be God's lover?) God will solve all my problems made me a little....well, freaked. Until I realized it was the Jehovah Witnesses. See, this is what gives the Jehovah Witnesses a bad name, not standing in the summer on the streetcorner holding The Watchtower. And not their beliefs but the creepy way that they come to your apartment building (because they can’t knock on your door), and write down all the apartment numbers and the names next to them and then send you a hand written letter.
Actually waking up to find I had no water was the first sign of a bad day. Then getting a message from my caregivers that no one was available for my “morning shower” and was 1:30 okay? Well, no, quite honestly, since I have a person here to teach me how to use Dragon Naturally Speaking and I prefer to not be naked for that; just one of those odd habits we disabled people have. I know I should be a “good crip” and make everyone happy and be showered with my laptop and the tech aide all in one ball of fun, but no; Beth just don’t do THAT brand of kink.
Then there was the phone call telling me I was “ordered” to have a holter test, next Thurdsay at 10:30. Wow, there is even a crip army which I must have accidentally signed up for. Well, I got my orders and they were going to hang up and I ask, “Um, by any chance, can you tell me WHERE I am supposed to get this holter test done?” So far appointments for Tues, Wed, Thurs. and Friday for next week.
Then in turns out that the wheelchair that we were going to use in Japan, which we were renting from Motion Specialties (which they now had in Vancouver, and needed to ship over), we find out today that they SOLD instead. So, currently, no wheelchair small enough to use in Japan. But hey, I have four weeks to find one. Also, Blue Cross informed us today that after we submitted for a walker and a hospital bed in November 07 with the OT and the Doctor’s note, and the first week of Jan. 08, the request was put on hold because Blue cross needed……an OT and Doctor’s note….but on THEIR form. Well, that has been processing another month or two and has come back today, rejected/put on hold again. Why? Because Blue Cross feels that the $1150 mattress we are buying with the bed doesn’t “reduce enough pressure” – meaning, it doesn’t support me enough. Now, you, on your $800 mattress may be thinking, “What the hell kind of support does Blue Cross want exactly?” I dunno, I feel that we have moved into the “deny for any reason” part of the game and now Motion Specialties (who though we actually paid for the entire walker in 2007, has not yet ordered it), will write a letter to Blue Cross saying, “Mattress very good, we charge them much money, is good for patient” or something similar.
I try not to think about how the bed is requested because “Patient cannot breathe lying down and is in constant pain” turns into a four month+ delay from Blue Cross because, I guess they CARE so much, they would rather I not have a bed at all, if we don’t buy a $1300 or $1500 mattress. No, no, not bitter, why do you ask?
The good news is that in order to post everything before we leave I NEED to organize the ebay sale this week, which means taking pictures of 50+ lots of manga and doing the listings for many, many hours. So, I guess I will fit that around my appointments.
I am sorry I am being bitter, which is better than being lonely, hopeless and wondering why people with disabilities don’t talk about having dreams, like goals or plans that much? Is it wrong? And where have mine gone in the day to day of tests, tests, appointments, tests and tests?
Anyway, getting off track which was that I was trying to get the crap done that I would with care, only I wasn’t getting care today so took down the laundry, folded it; went to get a gatorade…no gatorade. I remember mentioning this a few times over the last few days with Linda. Oh well, between her full time manager job and Japan and exhausting EVERY outlet (I REALLY don’t want to see this month’s phone bill as a) getting a wheelchair in Japan to rent there – insert laughter, b) Oxygen, we are calling all over the world to try and get oxygen and while we have two leads, it has been three weeks and we can’t nail either down. And we turned the reservations over to IACE which is the Japanese official travel/ambassador program who instead of simply MAKING the reservations at the hotels we talked to has now in some diplomatic twilight zone sent our entire itinerary to Tokyo. It is being reviewed at head office and they are sending us questions which we have to defend (yet, still not just calling back the hotel we called on Sunday to say (in Japanese), “Yes, Linda McClung WILL take the twin room, thanks”). So we get emails like, “Why are you only spending a half day at Nikko which is not enough time?” So we have to say that we talked to the official disability tourist organization in Japan and was told that Nikko is so inaccessible to avoid it entirely, but we decided to see the sword dance instead. They go back to study the itinerary some more. Of course the “official” disability tourist organization is such that after reading it you want to avoid Japan: ‘Your wheelchair will be too big, and if you have a wheelchair small enough you will not be able to enter: shrines, tourists attractions, hotels, houses, shops, many train station, buses, subway stations.’ I told Linda not to read it as it makes you want to kill yourself rather than attempt going to Japan in a wheelchair, but people telling me how freaking impossible it is only ramps up my challenge factor. I do have to say, not finding a 24inch tire, rigid frame 17 wide or 17.5 or 18 by 18 or 20 inches is a problem as we need at least a week to reconfigure it for my oxygen carrier, move the axle, and do all the retooling we can on it to make it as useful as possible for the trip. We did order a Ti-lite backpack but have…no chair for it as yet, and no oxygen for the chair (except for the oxygen sold in Japan at 7-11 for a hit to wake up on the way home).
Okay, back to hell day, which started when my “instructor” for “Dragon 9” which I will call Huff, she was older but a Heavy Use Female (HUFF). She knew nothing about tech, as far as I could see. Let me say that there are MY computers which I cannot afford to replace and the stuff sent by Tech Support, which I “get to use for a year” including a brand new computer but no monitor. Anyway, Huff decided to install Dragon on my laptop, and did so until the laptop went black. She hadn’t bothered to check if it was plugged in, and then proceeded to start plugging every plug near her into the computer. I shrieked “No.” and would have ran there if I could, but plodded over with the wheelchair, as we have an old laptop among other electrical equipment there. I arrived as she had put my sony headphone jack into the power outlet and was staring at it with frustration (not powering up the computer). I got her to stop shoving things into MY laptop and found the power cord, and she started installing Dragon….only it didn’t install. Why? Because while I told the representative at Tech support I had a laptop with Vista, it seems to save time from ordering it the techs had decided to “borrow” a copy from their tech library which was Dragon 9 not Dragon 9.15 (so Vista incompatible as we find out two phone calls later).
Huff is off to the study and by the time I arrive has removed MY flatscreen monitor from my computer (which is still on) and is trying to make it match with the DELL, only she doesn’t know what a monitor port looks like. Then the cord won’t reach so she goes to my power bar and starts to simply start pulling out cords (Another Shriek from me as I don’t want my computer powered down by the “unplug” method). So I fall out of the chair regardless that I started this by saying, “I am not in condition to be crawling around behind computers.” Well, the Dell isn’t showing up on the monitor so she is calling numbers but by THIS time it is 4:30 and I tell her, “They have gone home, trust me, at 4:30, or 4:25 nothing in government moves.” Meanwhile, I watch as Huff puts her entire weight on her forearms on the TOP of MY FLATSCREEN and bounces up and down on it leaving voice mail messages. Okay, I bought that flatscreen, after research, on a budget, at a Xmas clearout: she doesn’t seem to recognize that while Tech Value stuff she can do what she pleases with MY computer and equipment it is NOT immediately replaced. So she has me reattach the monitor back to my computer. Well, I have been down in the heat sink so long, I can’t get back into my chair and am literally face planted in the seat of my chair trying to find the strength to get back in. I do, somehow and turn a funny colour and can’t speak, just make clicking noises as I try to gesture with my one working hand toward the pen and pad. She looks at me and then continues unpacking stuff, and then, when she has decided to “Train me” she goes, “What, you want coffee?” (there is an old Starbucks cup by the pad). I finally get the pad and write for her to bring me the freezer packs.
She is now determined to install Dragon on my computer so “This isn’t a waste of time.” I explain, AGAIN, that I do not have the sound card, the RAM specs or other specs for Dragon which was why Tech Value sent a whole OTHER desktop, the one without the monitor. She installs it anyway. She is, as my review as a teacher, the WORST teacher I have ever encountered. For example, she kept the manual and the “common command” card to herself and would only tell me how to do something AFTER it didn’t do what I wanted. So I would say, “How do I go back and put this section in quotes. She would tell me what to say, I would say it; the words would show up on the screen instead of fixing what it should. She would tell me another way, and that wouldn’t work either. She then said, “This is when it is often better to use the keypad to type what you want.” Wait? Wasn’t I getting Dragon BECAUSE I have limited and diminishing hand usage? She left me with four commands on a yellow post it note. She said, “Okay, open up the help in Dragon” So I did. “Okay, now say “Exit.” I say “Exit” and there is a “WHOOMP!” noise as the computer goes complete dark.
Huff looks in the manual. “It wasn’t supposed to do that.”
“I know!” I say, “It just did a hard crash because of conflicts and because my machine does not have the specs to run Dragon 9 which is why they sent me the one over THERE.”
Huff, ignores me and turns on the computer again saying, “Let’s see what happens.” (Oh my poor baby, hang in there computer, I will try to stop her from destroying you completely!).
Anyway, by this time, she had been there So long that I could hardly speak and I couldn’t use one arm and not much of the second arm. So she decided that the solution to the problems with Dragon was I “should type more” (I looked at her in bafflement as, Dragon was supposed to solve the whole, ‘times when I can’t type’ issue). She decided to move on to the keyboards and different mouse. I asked her to turn off my oxygen concentrator and described it in detail ending with “You will see a switch in the middle with a green light on it, when you push the switch down, the green light will stop. Once the sounds stops on the concentrator you know it is off.” She goes in and for some reason it seems I am getting twice the oxygen feed as before but assures me it is “off.”
Linda is home by this time as she brings out six different keyboards. I told her I needed a BIGGER keyboard as my tremors make me miss keys. All six keyboards are smaller. By this time I can’t speak and I look at Linda with a pleading “Save me!” look – which Linda says she saw but didn’t want to push the woman out, though for example I sleep at 3:30 and it was 6:00 by now. I try to say, “End” and no one can understand and finally Linda puts the keyboard under my hand and I type out END. Huff ignores this as she continues through the difference Mouse that go with a computer. I type Linda, “Oxygen off?” Linda checks and instead of off, it has been turned up to maximum, and I am thankful we haven’t blown up. I type that Linda have HUFF show her WHAT EXACTLY she did to “turn off” the oxygen machine. Linda, I find out later, doesn’t want to embarrass Huff, while I am concerned that she has destroyed my oxygen concentrator in the same way she seems to try to destroy my computer. Huff refuses to leave until she has shown ALL her stuff and finally Linda says, as she is giving me an opiate that “maybe another time…” Huff ignores this and goes on. But when it comes to the cheat sheet and manual, she is adamant, she will not leave them. I am to use Dragon without having the commands for it. No offense but FUCK! I have a $1000 program of Dragon Professional, I am supposed to pay for it in 11 months because I am supposed to keep my writing contracts due to it and they won’t give me the DAMN MANUAL!
HUFF finally leaves, and I have now have barely an hour an 20 minutes to sleep in order to get any part of the boxing class in. I need that class because I didn’t go on Thursday and got teeth cleaning instead. If I don’t do it at least once a week, my circulatory and respiration system start to shut down. Linda assumes that I am joking about going to boxing and doesn’t wake me. I wake close to 9:00, twenty minutes from end of class and too late to get up there. I have had it, I feel that I am not only the only one trying to keep my health going but that people seem to be actively trying to work against it. I mean, lady (Huff), when your student for Dragon Speak CAN’T speak and can’t move and can’t breathe, maybe THEN it is time to MOVE on, to a) call 911 or b) leave, you idiot!
The news of the wheelchair and the no oxygen makes me feel like I have tickets to Japan but won’t be able to go. Linda and I argue, mostly about communication and how I have been trying to say that when I am too ill to take care of myself, she NEEDS to; this is something we need to be smooth in for Japan, and I felt that watching me stare at her while in pain while Huff went on wasn’t really good communication, or how she “decided” that I should sleep in, again, without communicating that she wouldn’t be waking me up. Of course, SHE had a long day and a hard day and I was angry that HUFF had been paid about $100 to put me in as close to a semi-coma state, as I have been in months. I wanted to go to the Y to exercise, but we argued and then we made up and acknowledged that the days and hours of trying and trying and getting nowhere was getting to us. It wasn’t my finest moment but I at least came to realize at least 40% of me was acting like an ass (more like 80% since I was panicking and seeing my 9 month dream slip away), and she said she would go to sleep when home care came and I went out for a roll. It was 10 pm by this time.
I get to the Y which is supposed to be open until 10:30 but to encourage an early close they have locked all the wheelchair doors. This does not amuse me. I am angry, angry mostly because this woman, Huff, in “Doing her job” regardless on HER terms violated my property and threatened my health – an abuse as much as I have received from anyone. I decided that no, I am tired of people saying, “Oh you are disabled, get used to it.” Screw that. Anyone who treats people that way is contemptible, whether it is rushing a senior to “help them along” and risk a broken hip, to people who make racist subconscious decisions while hiring. And the fact that so many in the disability community have a “yeah, get used to it” attitude made me even madder, like it wasn’t even worth fighting anymore. And this from a person whose manager and assistant manager hate her for the crime of wanting to leave my apartment.
As I rolled on to Starbucks (closed) I thought about the whole Triumph situation and how everyone I know has been to the Triumph meetings for a year and then eventually pushed into a volunteer position in a disability group to show they can ‘adjust’ in a ‘work-like environment.’ The library job I applied on my own for? The management, instead of negotiating with library workers has simply closed ALL libraries as of a week or two ago. There is still no negotiation so I don’t know if the library will open again, or when. I was determined NOT to be shoved off into a “volunteer” job because I started searching and going to triumph in November to make my life better, to make money for Japan, to be back in a work place environment where people could see me beyond the chair. And at this point I saw the Health Building. The one thing I remembered is that you CAN’T volunteer at a disability organization if you have an arrest on your record. So I decided then to do something affirmative, to take back control of my life: I was going to get arrested tonight! (This seemed a lot more logical at the time).
First I had to determine this was the health building, so I did, and I found a rock, but I couldn’t reach it. I wheeled on trying to find the police station and found a few interesting things. 1) Neither of the two main funeral homes in towns are wheelchair accessible, at least not in the front entrance, 2) No matter how many homeless, high people I asked, no one knew where the police station was and 3) I ran into an ENTIRE block of people who were all just sitting on the ground, it was pretty grim. Not just one or two but like, maybe 100+ homeless people, sort of ‘lined up’ at 11:00 pm at night?
I asked a guy taking a toke where the station was, and he pointed me south, I ignored him and found it a block later keeping on the same way. I found that the odd statue in front of the police station had a Braille line on it, and while I learned Braille in fourth grade after reading the Helen Keller story, didn’t help me curb my curiosity now. What did it say? Anyway, just outside the door, on a cement planter there was this hacksaw, actually a brand new hacksaw. So I put it on my lap and as I went in I asked the woman coming out if it was her hacksaw. She said no. I thought that someone at the station forgot it outside and since there were some people who were high in the bus shelter across the street I thought maybe leaving it outside wasn't a “good citizen” thing to do.
Well the station was closed, just a “Speak in the phone.” I was pretty disappointed and looked to see if there was a dead bolt so I could do a bit of “sawing” in hopes of showing my vandalism potential. Nope, no deadlock. So I picked up the phone, told them my name and asked to be directed to a station that was open. “Why do you want a police station?”
“I’ve come to be arrested.”
They asked for my name and birthdate and said someone would come. Well, out comes a guy still eating a cookie but with a gun tied gunslinger style to his leg. I found out later he was the ERT (emergency response team – you know the guys who shoot someone bipolar who has a pair of scissors, like they did in Vancouver….twice!). I came into the lobby. What was up with the hacksaw? I explain that it was THEIR hacksaw and I was bringing it in because it was left outside the door and someone could do damage. They took the hacksaw from me (what? Did they think I rolled around hacksawing limbs or something?). They wanted to know what I was to be arrested for.
“Vandalism.” I said, then amended, “Actually, intent to vandalize, because I can’t reach the rock I want to throw at the health building, and if one of you (there were three now) can come with me, and hand me the rock, I can vandalize and then you can arrest me.”
One of the police scratched his head and said, “We can’t really facilitate in a crime.”
“Ah, but you are not,” I said, “you are just handing me the rock because I can’t reach it and what I do with it after that is my choice.”
“Why do you want to break a window of the Health Centre?”
“Do I have to break a window? I mean, I could crack one, or just throw it at the wall and you could arrest me for intent? And why, because today I was supposed to get a shower and I didn’t; I was supposed to get oxygen and I didn’t…it’s a long story. Actually, if you know where the mayor’s house is, I could vandalize that, as he is demolishing a building with 14 people, like me, with disabilities so he can please the business owners by making a building to house 50 homeless people. Making 14 stable people with disabilities homeless so he can announce he is “solving” the homeless crisis.”
At this point the ERT guy left. “Actually,” I said, “I ran into this ENTIRE block of people sitting on the ground in the middle of the night, just a few blocks from here!”
“Would that be near the NEEDLE EXCHANGE?” one partner asked while the other laughed.
“I don’t know,” I said, “But I think many of the people were in an altered state of mind.” (I didn’t want him mistaking me for them)
He got serious and said, “You DO NOT want to go near them, okay, you are a ‘good person’ and don’t go near them.”
I told him that actually I asked several the way to the police station and NOT one knew and maybe they should start a campaign to bring in a bit more awareness to the area. The same guy said he was PRETTY sure that they knew where the station was, they just didn’t WANT to remember. Anyway, they wanted to know why I wanted to be arrested so badly. I told them it was a bit complicated and started by saying that a little over a year ago, I was then, as they were now, able bodied, and that I have five degrees.
“Five more than I have.” Said one officer.
“Yes, but you have a gun, so that sort of evens things out.” I replied (turns out, this is NOT a phrase to use when police officers are assessing if you are a “threat to yourself”).
So I explained the twisty logic of how I wasn’t going to end up as a volunteer because that is the way the system is set up to shuffle us off into the sidelines. Only I was having problems with words because I was overheating and having heart spasms and they pushed me outside and helped me with my clothes to take off my jackets. And I asked why they kept writing things down.
Because they have to file a report.
“Oh,” I perked up, “In that case, you can just arrest me!”
No, that was even more paperwork.
Oh, so I apologized for having to make them do paperwork and that as soon as I could use like, my hands, I would head off. Well, it wasn’t that simple anymore as they did not feel confident to let me go as they saw that I was in “medical distress.” (I thought, “Oh Shit!”)
So it was going to be the hospital for me. At which point I told them to call my night care worker who was waiting at home and said she would give me until midnight before she started cruising for me. I then convinced them of my good health by opening my bag with my teeth and getting out my phone and dropping it. Turn it on and it says, “Your battery is low” before shutting down again – SHIT! So they called the night worker who attested that yes, I had a serious condition and she would come for me (Thank you!) though I said I could wheel off, apparently getting INTO a police station is easier than getting OUT again.
So I was talking up my night worker and how she threatened to carry me over a shoulder to bed once and she was a real cracker and maybe one of them might want to date her? Along with a few, “Oh, she is SO going to beat me!” because I know you don’t want to get her mad. Anyway, she came and transferred me to the car, and the police wrote down my condition and then asked to “speak with her” (they told me, that no, I still have a PERFECTLY CLEAN record).
Well it turns out they wanted to know if my “condition” made me deranged or confused or prone to acts of violence or self harm, and she said, no, I was having a bad day but they made her give them all her details which did not amuse her (So a story in her past there, I bet).
And she said, driving back, “Have you noticed Elizabeth, that when you get frustrated and throw a little tantrum that you end up doing something self destructive.”
I told her that I was TRYING to do something to move my life in the direction I wanted and quite honestly, with what is being thrown at me, having a tantrum only once a month or so was amazing on my part.
She agreed that she had no problem with a pout but with the self destructive aspect. At least I didn’t hurt others. And I promised that I would tell Linda how the stuff came down on me and I was sorry that I didn’t see her side, that she had a hard day and yes, I was vulnerable physically and yes, things didn’t go according to plan but she didn’t intend that and I couldn’t see beyond that and I apologized.
Well I had a BAD night, because it turned out that is the farthest I have wheeled in like six months. And that it was a bit more self destructive than I intended (physically). As in, OW! But didn’t sweat so doesn’t count and my respiration and muscles are getting weak very fast. But here I was with the same problems and frustrations but with things all okay with Linda only now, a day later and in more pain. So the plan didn’t exactly work out. But for those who go, “No, she really wouldn’t go up to a street person who is high and ask for directions to the police station” Well, yes I would, repeatedly. And yes, I would ask to be arrested, because that is what I believed would be the best career move at the time. And no, I haven’t been hit repeatedly on the head to the point where I have VERY low impulse control.
So that is a sort of “happy version” summary of my BAD day. While today is just a painful day. But sorry for not commenting back on comments and for not replying to all the emails as I was pretty messed up physically by the time I got back. And I guess, you could say that my life can’t be all bad if I have someone to come and pick me up at the police station at 11:30 pm while my partner is zonked out on sleeping pills (it WAS her night to sleep), even if it is someone I pay, I think that was beyond the call of duty.
Please feel free to give me tips for my next encounter with the police (but remember, I have no real desire to actually hurt someone, or make them do unneedful paperwork, or clean up a smashed window – I just want a job, which I will not be looking for until after I get back from Japan because right now, saying NO to specialists and getting my sleep and health stable BEFORE I go IS a job).
1 day ago