Thursday, February 28, 2008

a lesbian breast crisis and the message of the orchids

I have been watching Blood Ties, a supernatural show about a PI Vickie Nelson who takes on a case about what appears to BE a vampire but is actually a demon and meets a in-town vampire named Henry trying to stop it and they team up. Kind of like the show Supernatural with more sex allure and rubbing against each other between the main characters. I watch it before going to bed or when I can’t do anything else. I got it from the UK but it is a Canadian production set in Toronto, very similar to the Vampire/Detective series Forever Knight. Only with these differences:

*In Forever Knight our vampire was 500 years old and somewhat famous/same in Blood Ties only NOW he (Henry) is a Graphic Novel artist(hence, a "cool" vampire).

*In Forever Knight the vampire was turned into a vampire by a MALE who keeps showing up trying to get the vampire back though both are STRAIGHT. The vampire also has a MALE detective partner.

*Blood Ties we have Vicki (Straight HOT female), who is not in the force anymore because she is going blind (at night particularly), but has this “chemistry” with her MALE ex-partner (Mike). So when she hooks up with the MALE vampire (turned into a vampire by a FEMALE) who also is making the moves on her, this has a lot more chemistry – so like a Supernatural version of Bones (plus Vicki ends up with a goth secretary/researcher who wears different corsets every show – woo hoo!).

*So while in Forever Kight, with all these Straight guys standing around, not so interesting.

Last night I was watching an episode and Vicki was going on a jog, her ex-partner Mike joined her, they argued about Henry, and he split off and there she is in view (I think about to see a body or something) but mostly showing off her breasts which were size C or larger and I am thinking, “She has NO support for jogging…I mean, those suckers would be slapping her chin if she started sprinting.”)

Then I sit back in horror. I have stared at boobs and I am thinking, “That is completely improper support” instead of “Oh Boobs!” I am a little worried, concerned. Does this mean my “lesbian” instinct is dead? Is this the sign of my orientation dying out and that soon (shudder), I will start to become INTERESTED instead of averting my eyes when a guy takes off his shirt? It puts me into an orientation anxiety spiral. Luckily there is a scene of the secretary, with her pouty lips in a basque corset and I am all VERY interested in the show (people on the screen talking, will catch up later once corset and pouty lipstick leaves room). So, still a lesbian, only a shiver and a near miss at how my obsession with proper breast support is starting to dominate TOO MUCH of my brain.

Okay, deep breath. I went to boxing tonight with my volunteer aid, who was wearing a t-shirt which said, “Exploited” across her breasts and “”For a good cause” underneath. She saw me reading the t-shirt and said, “It was a charity…”

I put up a hand, “No explanation necessary," I said but thought, “Damn! Why didn’t I get a shirt like that!”

Ian, the coach decided to go out with a bang, which meant we did rounds with 1 minute of sit-ups and push-ups between, no break. Oh boy was my night care and I going to pay for this later. After about 30 minutes I wondered if I would EVER pick up anything with my right arm again (that was after two rounds, three minutes each of “cross punches” with the right). Anyway, I was all a sweat and got the job done but usually on a buzz for a few hours from the class but here, 30 minutes later the pain kicked in. In a hour, by the time night care had come, I had a slump-over.

My care worker did a stroke assessment and my tongue was curled over and I did a half smile and she said that I probably had a TIA which isn’t a slang for sex or anything but some sort of mini-stroke. But the neurologist who treated my grandfather said that while it will often look like TIA's, it is actually a sign of autonomic failure. Well either I am having mini-stokes in my EARLY 30’s (glares around) or I pushed a bit to much and the autonomic part is dropping parts of me (specifically my right side of the face, body, etc). Either way, I am thinking, “This is bad right, mini-strokes?” I mean, they never say, “Yeah, after that stroke, my piano playing REALLY improved.”

Oh well, I like to think of brain damage as just my way for getting ready for US reality TV shows. After that, I felt like someone decided to use the inside of my chest for an impromptu barbecue and my heart monitor showed around 30% erratic heartbeats and then I saw blue (literally). So I thought, well, no time like now to finish that blog. I mean, I could sit here and think about how MANY times I will ask for pain killers tonight or talk about a t-shirt with the word “Exploited” across the breasts; you know what I choose!

A few days ago Linda bought me a stem of orchids in a blue vase saying, “I got these because they remind me of you; beautiful but fragile.” So there was a moment of “Ahhhhh! Today, the orchids are looking decidedly dodgy and I asked Linda, “Was there another message you had with these orchids?”

And she said, “Yeah, they’re dying too!” And then laughed.

I am not sure to be glad that I married someone with a sick sense of humor as me or scared. I mean, she cares...she loves....she laughs maniacally.

Wednesday, February 27, 2008

I take medical control (failed) while headway with Japan & Kimono obsession

I decided to take control of my life today. When my GP called I told him that I was only going to have one medical appointment a week for the last two weeks of march because a) I am booked every day until March 12th already and b) I need to be healthy enough for an international flight. He said, “Well, that would be nice…..but….”

I think that falls into the “Oh Shit” category. I have concluded that my specialists need a subject, but must that be ME? For example, if I had NOT had the “help” regarding Dragon 9 which was supposed to help me make sure I made all my writing deadlines, I would not, for the first time in 2008, be missing a deadline tonight (I can write a draft….but I don’t turn in drafts!). Because I could have used that day to write the piece. So, I am offering good Canadian money (worth more than US….some days), for someone who will step up as Elizabeth McClung and fill in on these tests for me.

Because again, we are all in mystery autonomic function territory here and quite honestly, I would think after being wrong a solid year the doctors might let me call a few shots. Like the Dr. A. who not only I but also MY GP thinks her last diagnosis is completely contrary to these recent tests (much as her earlier diagnosis), has said to me, “Ego may be a factor in getting the assistance we need.” (no sadly, not mine being stroked but Dr. A’s). And this is while Dr. A. is refusing to give up her LAST assessment which I need to get PWD status federally. My doctor’s staff has actually contacted Dr. A’s staff who say that Dr. A won’t give the notes for my visit to her in Oct/Nov to THEM; so they can’t give it to my GP. No, it isn’t Monty Python, why do people keep asking that? This is a well ordered system of socialized medicine: I might note however that my FATHER’s hand tremors shown to the same GP as I showed MY original hand tremor’s too got two results. My father got…… immediate order for an MRI! I got……a diagnosis of PTSD and a prescription of valium! Not saying there is gender bias, just pointing out the difference in response. Actually, if there are ANY males who have been diagnosed with “hysterical” anything, can you let me know? I just say that since my seating clinic Physiotherapist had been referred to MANY cases of females with “hysterical paralysis” but no males.

Okay, now it is midnight, and……

Sorry short post today because I spent 5 hours today reserving hotels after learning about Japanese culture. I called IACE and said I would stay on hold to answer questions while they called the reservation in. This is when (four days later) we find out that, they are not authorized to make calls to Japan, which is why the itinerary was sent to Tokyo for review, why everything is in slow-mo mode. This took until 6:00 when I called Tokyo and made a reservation and then after the nap we called Kyoto: Linda on one computer looking up web pages while I scrolled through review sites calling out possible places. If they matched on three sites we called them, asked for a room, asked how many steps to the bathroom and asked for the QUIET side (it seems EVERY hotel has a noisy side and a quiet side), so far we have 2 candidates for Beppu, three nights reserved in Kyoto, 2 in Kanazawa, two in Tokyo and one up in Kakunodate. So we have most of our rooms reserved or possibilities, particularly the busy central Kyoto or remote areas and now feel a little better. Only oxygen and a wheelchair to go! I am obsessed tonight with getting a silk Kimono from Kanazawa which uses a 18 step technique and uses purples and deep blues, far different than the Kyoto colours, and recognized as an art of its own in 1975. Linda is like “When are you going to wear it.”

I have a glazed look, “Want KIMONO! I will frame it if I have to and put it on the wall. WANT pretty Kimono!” Here is an example.
Anyway, off to sleep as no ebay done today but we are yards ahead in the “Are we REALLY going to Japan and not going to sleep on the street?” question.

More news tomorrow on all the juicy details of where we are staying and what we are planning to do (like watching the apprentice Geisha at twilight as they hurry in groups to the performing theatres and special rooms in Kyoto)

Tuesday, February 26, 2008

The BAD day: from Stalker God to difficulties LEAVING the police station

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).

A Bad day and a distraction

Please talk amongst yourselves; had BAD day which ended with me being picked up by my care worker at the police station at 11:30 pm (Tip: when you desire to get arrested and go to the police to ask for help in vandalizing something (so you can then get arrested), DO NOT pick up the new hacksaw you find outside the police station on the assumption that they must have left it outside and want to return it to the police BECAUSE it turns out that wheeling into a police station holding a hacksaw saying “I want to be arrested” gets you two police officers with guns doing a threat/self harm assessment on you for 25 minutes).

Here, a music video of badminton to remind us of better days.

Sunday, February 24, 2008

Disabled Like Me: The day it showed.

Today was my anniversary of becoming a full time outdoor wheelchair user (still have some walker use inside, though I keep hitting walls and getting stuck). I remember my second day outside I went to the oceanfront cliffside path determined that “this wasn’t going to change me” and the woman who would be doing my wheelchair seating for my permanent chair was walking her dog as I labored in a front heavy, too small wheelchair. She told me she kept saying to herself, “Don’t stare at her…..she probably feels bad enough being is such a badly fit chair…..just don’t stare.”

Of course people DID stare because a) I did not have a lot of control, particularly of a front heavy chair and b) I was in a wheelchair and if you are in a wheelchair, people stare, except when you need to get somewhere and then they can’t see you and get in your way. However, I was not concerned too much about the mortification of being in a BADLY fitted wheelchair (This woman takes her job VERY seriously….maybe too seriously). I got the wheelchair because several medical professionals I respected pointed out that since I was falling down even with my walking poles about 8-12 times a day, and I couldn’t go more than a block or two: that it was only a matter of time before I broke something, maybe inside my head. Of course, my GP was puzzled at the request because he had not yet figured out what I had: Diagnostics, that was the key! I ended up with four wheelchair prescriptions in the end though.

I could go farther in the chair than I could walking. I could take the bus and go to a mall. I could do a 5K along the waterfront trail. It was only two days until I had my first woman get a trembly chin and go, “You’re so…..SO…….you’re still smiling.” And walk off across the grass where I couldn’t follow her leaving me puzzled what that was all about. But hey, who was I to judge someone else’s mental condition?

That is still true today, I might only be able to go a few blocks every other day but that is a LOT farther than I could get any other way (well except using that electric wheelchair I was given and am too proud and scared to use – I hit things in it….a lot!)

Anyway, today was a lot of trying to do things but not actually doing them; I overexerted myself at badminton which meant that I couldn’t sleep this afternoon and needed pain pills, muscle relaxants and more sedatives than I use for a whole night to sleep just over 1 hour (but three hours of trying). Then Linda and I spent a great deal of time finding JUST the right hotel in Tokyo: wheelchair accessible, near the Yaoi theme cafĂ© (No men allowed in past 4 pm as all the “waiters” are females in androgyny men’s uniforms (and coats with tails). An extra fee gets you a seat at the “bar” where you can have an intimate conversation with the “bar man” (female). Yeah, my kind of place. Also near the Ghibli Studio Museum, which is wheelchair accessible. Only on the phone when I asked about if it was quiet did the “construction outside” come up, and how it is quiet “not at day” – well, for someone who needs to sleep in the afternoon, that kinda sucks! So in the end, we spent MANY hours and managed to make ZERO reservations. And that was our day. I did get, thanks to Michael/Raccoon’s recommendation, AirMed coverage which will evacuate me if I am hospitalized on a private plane back to Canada with my own medical crew. So, if I have a heart attack or am hospitalized for any reason, I can be flown back to Canada under this coverage. This is travel insurance for people like me who have at least 20 pre-existing conditions.

Other than that a pretty crappy anniversary. But then, I am just trying to get on with getting on. I don’t really know if I would recognize myself from a year ago. In many ways I feel that, often housebound and with all the medical hassle and pain, I am flying (maybe because falling seems so similar until you get to the bottom). For the first time in my life, I don’t hate myself for not achieving enough, fast enough, working hard enough. I mean, sure I still have my, “Oh, wanna cut!” moments and I would like to do more, but I am pretty okay being me. I recently finished a piece for women’s day coming up next month and they asked me, “What do you want by your name?” meaning how should we introduce you, what accomplishment or other aspect do you want to be associated with? I wrote back: Canadian female, new wheelchair user.

No, I am not my wheelchair. But if you ever wanted to put on a pair of glasses that changed how you viewed almost everything forever, it is a quick trip. Coming out sexually wasn’t the same because I KNEW, just everyone else didn’t. Here, everyone else thinks they know…something because of the wheelchair and not even I know for sure what the chair and I together mean. To tell you the truth, I’m not even sure if I am disabled or just ill and melting a bit like candy floss in the rain. I read the people who have been in a wheelchair a decade, or two and I don’t know what that means. I have finally had a metal bit fall off my chair, so it might be considered “worn” (hard to make a piece of solid titanium look ‘worn’). As the main character is asked in the book A Pack of Lies, “Where are YOUR people, YOUR home, YOUR belongings, why are you always here, just reading and spouting stories.” And the main character took a bit of metal, a toy soldier out of his pocket. “That’s not a home.”

“It’s a start.” He replied.

I guess that’s what I have to say about this year: It’s a start.

Saturday, February 23, 2008

Immature, depressed and 4+ hours to reserve a room: my saturday

Okay, I think we set a new record for making a hotel reservation, which is four and a half hours. BUT, we now have our first night reserved in Japan. It turns out that people in Japan speak....Japanese (yes, two slaps for our hoping/assuming there might be English speaking at hotels – “typical North Americans!”). Well, it also turns out that the year of Japanese language we took a couple years ago is pretty much in the corner of the brain reserved for how to beat Donkey Kong: We may “know it” but can we remember in time? Also, it turns out the class did not teach us to say, “Do you have stairs up to the room?”

So it goes like this: Linda is on the laptop because it has Vista and actually translates the Japanese kanji (while mine keeps asking for Disc 2 of Professional XP every time I try to load the language program – curse those geeks who reinstalled my operating system!). I find the numbers for hotels and make the phone calls because if Linda calls the number it says, “Number not in service” while if I dial, it goes right to the hotel (Yeah, mystery, but that is just how it works). Then Linda attempts conversation number 1 while I am googling like mad to find the word she needs. For instance, I FINALLY found that the word for “Wheelchair” was “Kurumaisu” on I found a list of phrases like, “I would like a twin room.” “A Western Room” and such on a site for Snowboarders who were going to Japan to snowboard all Winter. And I also found a site of polite phrases including three different ways to say, “I’m sorry” (informal, formal and VERY formal). Yes, we DO have a Japanese/English dictionary and NO, we don't know where it is. So we called some hotels back three times to find out that yes they had twin western room and yes it was available but NO on 'kurumaisu' because there are “kaidan” (many stairs). We did find one place that is “barrier free” in Kakunodate Japan, but we need to find someone who can write the Kanji for us to reserve the room and fax it to them as they speak no English at all.

Kakunodate is our second stop on the Japanese Tour and is known for its cherry blossom festival as there is a path by the river where over 200 cherry trees (imported from the original capital Kyoto) run for two km and have made this town a site of the Cherry Blossom Festival for over 250 years. In fact the river is rated as one of the 100 most picturesque places in Japan and one of the trees in the Samurai quarter is a “significant Cherry Tree” (they REALLY love Cherry Trees over here). This used to be a castle town which meant the samurai who served at the castle had houses: the highest ranked closest to the castle and then further down from the castle by rank. Six of the samurai houses are open museums while others are pickle factories and different converted but open businesses. So while the castle is gone, the Samurai Quarter remains. We chose it because it was a) a place to take a lot of pictures and b) Something we could see in 1 hour to 5 hours depending on my condition. It is a very flexible but also often unvisited scenic location at the top of the Japanese main Island, up in Northern Honshu, which will be interesting as we are taking the train through the mountains to get there. We have tried to visit almost all the islands and parts of Japan, AND both coasts and do it all in 17.5 days. Will I still be alive at the end?

The reservation we got was for Nikko, where will we be on April 2nd. Yes, this is where I originally wanted to go to the festival to see the sword maiden dancing in April 13th. However, the disability organization in Japan found that at 9:00 a.m. on April 2nd, the Shine Maidens dance the sword dance (reason for dance on that date both arcane at at this point...unknown) at the temple which can be accessed by Taxi (meaning, taken there and then wheelchair from there). So I CAN see the dance, because it is in a different building than on the 13th: and less people. Bad news is that Nikko is THE getaway place for all of TOKYO, which means that an accessible room is.....wait for it, $400 a night. We instead got a room in a wheelchair accessible hotel which is the budget room (this is what took another 2 hours, particularly after the confirmation was for the wrong night). The down side, I have to drag myself in through the door because they say it is TOO small for a wheelchair and Linda will need to break the wheelchair down to bring it in the room (that room is only $140). I did mention that Japan is NOT that wheelchair accessible didn’t I?

The good news is that we are staying at the over 100 year old Nikko Kanaya Hotel, a joint Canadian/Japanese design using Canadian Yellow Cedar, and built in 1873. It is the oldest continuous operating resort hotel in Japan and overlooks the bridge and the river from its place on the hill. It is also within wheeling distance to the shrines and means if I need to, I can lie back down after seeing the dancing until check-out. The down-side: crawling/dragging into the room (Pride, I don’t need no stinking pride!). Some of the people who stayed here (and did not crawl/drag) include: Charles Lindbergh, Eleanor Roosevelt, Albert Einstein, Indira Gandhi and even the Emperor. There is a sketch by Frank Lloyd Wright (the one who designed the train station we will be arriving at), at the hotel above the fireplace. COOL, huh!

But still, I have to hope the rest of the reservations go a LITTLE faster than this.

What is disgusting is that Linda is doing great reading out the sentences and has the whole intonation thing down pat (sounds disturbingly like a 17 year old girl – guess all those anime we watched together did come in handy!). While I, with my dyslexia, cannot say a single work without a) changing how I say the vowels every time and b) throwing out consonants which confuse me and putting in ones I like (I don’t think this, my brain helpfully just does it for me as it comes out of my mouth); which means I find the words but Linda says them lest I tell the hotel operator that I love his mother’s pickels).

Also much time was spent trying to make sure the neighbors (the assistant manager who was icy at us yesterday) are NOT pissed at us by baking them rice crispy squares to find out if last night was a bad night or more..... At which point they simply shut the door on Linda without looking in her face or accepting the squares. So, yes, neighbors pissed and not sure why (though think article MIGHT have something to do with it – but then, since they aren’t saying, who knows.) I mean, no person in their right mind hates Linda, if she puts up with me, and is kind to all people and small animals, we know that she is a saint and likely glows when I am not looking at her.

I also found that being disabled doesn’t actually mean you still can’t get depressed. So I did. Or I was. Only when you sleep 2/3rds of the day, getting depressed and staring at space or the floor makes time REALLY fly. So between, the “Let’s find out if the neighbors hate us.....YUP!”, me depressed and almost five hours trying to make hotel reservations (we did, in our defense call MANY non-english speaking places with western rooms which had stairs, so just kept going down the list). And I had a shower. And thus a day goes. I won’t bore you with pain but will mention that by the afternoon nap I had lost sight in both eyes, and was still trying to type emails, and saying, “No! Why do I HAVE to nap?” (yeah, lots of maturity – did I mention that you can be immature AND disabled too: all sorts of new discoveries.) How much sense I made is entirely up to my mandatory touch typing class and years of typing hours a day. So if you got a email of gobble stuff, that wasn’t spam, it was me.....sorry!

Anyway, new goal for tomorrow: 1) pretend to act mature, 2) LEAVE APARTMENT and 3) try to make TWO reservations. I know that is a lot for one day….but you have to dream!

Friday, February 22, 2008

Conflict: care, disability and bullies

I do not do well with conflict and I do not like conflict. This may surprise you since I am calling up Fire Inspectors (after waiting THREE DAYS), I am exposing Triumph (Hey, when someone treats me like a lab rat, I strike back!), and I talk back to medical specialists. But having said all that, I WANT a calm life, I want a nice part time job where I am liked, a quiet apartment where I have friends and to be treated with respect. Most of the conflict recently has been around being treated worse than most people would treat their enemies and having people consider it normal because I am disabled or in a wheelchair (how many of you would really make someone you don't like CRAWL for long distances?).

Today, the alternative Victoria paper did an article on how the Fire Inspectors can’t levy any fines or ensure tenant safety and they mentioned me as an example (and printed the picture of the notice I put on my door). Well, my manager Fran, as I was showing a new care giver the laundry room was at the end of the hallway with the paper in her hand and blood in her eyes. When she saw my care giver she backed off but when my care giver came back up she said that Fran had followed her in and was complaining about scratches on the door on how I must have caused them and now SHE would have to paint them. Then tonight, the assistant manager, who we have had good relationship with for over a year and a half has turned sort of icy (and rude) and now we decided we need to meet her tomorrow to find out if it was just a bad day or if there is a new and real problem. I just want to live someone safe, and quiet and where I can come and go. Do I make a stink that our elevator always misses the floors by a few inches? No. Or that the laundry room has a little step up and the narrower door than my bathroom door? No. I can deal with that, I can go with the flow. When Linda came home from work Fran gave her the “wouldn’t it be nice if YOUR head exploded” look too (and Linda says, "She virtually snarled at me"). But I have decided that we should have a meeting with Fran AND the owner (or representative) because all we wish for is basic tenant rights and to be able to give them money every month. I would think it would be in her best interest to make sure that quiet and dependable tenants whose checks don’t bounce would be able to come and go with ease and everyone is happy.

Then there are the appointments. There is usually SO much conflict with each appointment or a waste of time and energy that just the word “appointment” is full of negativity. I have another appointment which was made today with the Neurologist Dr. A. The same neurologist that originally confirmed my GP’s diagnosis that I was suffering from PTSD. Later who concluded I DID have autonomic failure but when she said she needed to find out what test there was for heat intolerance and I would pull out a sheet saying “It is called XXXXX and it is done in Vancouver.” She would throw it in the trash…in front of me. Then she couldn’t be reached for over four months. Now, after the Vancouver Clinic has said I have to be prioritized, it turns out that the head of the clinic was her teacher and NOW, this week, once they decided I NEED to go to the clinic she is saying that as she has been trained by that teacher, SHE, Dr. A., is qualified to do the tests. This would be the same neurologist, Dr. A., who said my “neural system was perfectly intact” though the conduction test has now proved it is not, and now SHE wants to the follow up tests? Do I see conflict? Do YOU see conflict?

Then we have the heart specialist who refuses to see me because I have needle phobia and won’t obey him, so he won’t treat me or order tests. Except now he has Dr. A. on his back saying, “Hello, she is probably dying and do you want to keep your medical license?” (I can only imagine what one needs to say to a heart specialist to make them do things quickly which doesn’t involve dynamite: Or as the nuclear medicine techs said when I said, “Have you ever met God, my heart specialist?” And they laughed and say, “Oh YES, we have met cardiac specialists….”) So, the specialist is STILL saying that my needle phobia can be cured with a couple valium and my GP is saying, no we need an anesthesiologist. When I have the meeting with the Cardiac Specialist who told me, less than three weeks after an epee competition and less than three months after going to nationals that I was passing out and had hypo-tension because I was lazy and sat around on the couch all day, do you think there might be conflict? Do you like being told your problems are because you are lazy and thus he is not going to even bother testing for them. And then, almost a year later, finding out that you are not lazy, you are dying, you STILL can’t get an appointment to have heart testing when your heart is failing, might there be conflict?

When I found out today that the reason RN manager H. from Juan de Fuca resisted my getting Task 2 for oxygen was because every worker who works with someone who has a Task 2 gets paid more money (as in, make sure people don’t get task 2 and you save the company money), did I feel the six months and 60 hours of meetings were about my care or about being a “good company manager?” Why is the RN, the head of the LPN’s also the person who denies care in order to keep the company in the black? Is it like those doctors who spend all day denying coverage for HMO’s – what part of their oath is covered with that?

I just want a life where people might come to my aid at the sight of obvious injustice as I do when I see it in other’s lives. I don’t want to be at war with people because if I am not, then they are risking, not my opinion but the care which continues the support of my medical condition. Do I want a noise row with neighbors if I need to sleep? Does stress affect my strength and pleasure of life? Does knowing that every time I leave my apartment I have to carry a recorder in case I run into Fran make my life better or instead produce more stomach acid? And honestly, I DO NOT want to file a human rights complaint against Fran. That is simply because I don’t want to spend a year or what strength and time I have proving what I know, that she has some issue with disabled people (maybe because they might chip the paint), and that she is a bigot. Why can she not just leave me in peace?

Okay, that was a bit of a rant and feel free to add your own; it is just, when I was able bodied, I felt more secure in facing off against bullies. But now, Fran wishes to evict me or move me to where she can bully me BECAUSE I am sick and weak? That is twisted. Specialists and Care Companies care more about profit and their ego and not looking bad in front of their old teacher than the patient who is in desperate need of care?

I am just tired. Tired of being afraid. Tired of another meeting, another conflict, another blaring sound attack through the wall, another glare and stare and blocking my wheelchair, tired of it all. But it seems, the only victory they will accept is…..what? My death? I was not born a bully and I do not like having to say, “Back off because what you are doing is illegal and I WILL file a suit against you.” And I don’t like having to do it EVERY WEEK!

Thursday, February 21, 2008

Doctors, dental and drudgery: plus a kidnapping (squirrels!)

The day is done and here I am drinking a cold North Carolina Cheerwine in the bottle, as sent to me by Alphabitch. A horrid day filled with a few acts of defiance and one of inspired kidnapping.

I woke to “Oh God” which is where my hands are claws, I am in so much pain I talk like Nina Simone after a night of drinking (raspy), and I sort of rock back and forth. I wanted to return to bed only this was shower day and so far, assisted showing and mewling in bed don’t work together. So I had Orange Juice and Opiates: The breakfast of Champions. It took 20 minutes for the pain killers to kick in and I was still dodgy during shower time which meant my hand couldn’t hold on to the shower wand.

So, what does any person in this much pain and dysfunction facing a two hour doctor’s appointment, a writing assignment and a dental cleaning do? They wear a corset of course. I realized that BECAUSE my home care person was here to dress me, I could wear a corset and get them to zip me up in the back. I had a blue brocade one I hadn’t worn in months. Add my Victoria Secret hoodie for the crisp sunny day and I was set. And you know what, looking good doesn’t actually make you feel “good” exactly but it can make you feel sexy AND in a lot of pain (which is WAY better than just “in a lot of pain”).
By the time I gotten half way to the GP, I had the hoodie off and was flying down the hills, playing my trance tunes on my MP3 player and getting a) WAY more guys in cars/trucks stopping to let me go first (Oh men....seen so many boobs yet still happy to see more), b) half the women saying, “Great top!” and c) the other half saying, “I feel cold just looking at you.” Well, that is the advantage of extreme heat intolerance and not sweating, I dress sexy in Feb., while I pass out in June.

The doctor’s appointment was a bust; it was sort of a “hey, there are going to be a bunch of tests coming up” and do you REALLY have a needle phobia and do we REALLY need anesthetic for some of these tests? (answer to both: Yes) I told him that a) I am taking a vacation and b) My health is getting worse BECAUSE of these tests so he and the specialists need to decide what really IS important because I can’t do this one a day stuff anymore. Also, I demanded another holter test because the one the cardiologist is using for my condition is from April and shows 12 seconds of erratics. I said that as he, my GP, had checked my pulse for a total of two minutes in our history and seen and heard erratics, that old Holter test was dangerously erroneous information if I am having autonomic failure AND it is targeting my heart FIRST. He felt my pulse for about 20 seconds and then said, “There’s one.” (erratic) I told him with the hours of erratics at night and early morning I felt the last Holter Heart Monitor reading was off not by 100 times more erratics (meaning 100 erratics now for each recorded in April) but a factor of 1,000 or more. He prioritized that. But I get no neuro painkiller until I see the neurologist to find out how my neuro system is screwed and why the pain is happening to make sure the neuro blocker doesn’t destroy MORE of my system. Yeah, yeah, but me still in pain?

At one point he said, “How can it be destroying BOTH your central AND peripheral neural systems?” I told him I was completely up for a re-diagnosis of MS! He gave a tired smile and then went on about how he cannot see any way it could be POTS (the good kind of autonomic failure). Which we established months ago...keep up doc!

Linda at this point, before me returning to sleep to rise, a zombie in search of dental scaling and cleaning, kidnapped me. She did so because it was a sunny day and we had peanuts (No, I am NOT having an squirrel orgasm in the picture - it just looks that way).
Indeed for normal people it was the type of sunny day for which Victoria gets the reputation of smug, annoying west coasters who post pictures of the beautiful flowers already coming up while the rest of the country is under snow and ice. Yeah, what kind of person would be so obsessed about taking such pictures to send to relatives in Manitoba, Sask, and other icy climes? (No need for pressure me to tell – it was Linda! Get her!)

Anyway, I was back in the park but a couple minutes when the first squirrel to notice me was one who obviously remembered me, the chair, the corset the whole deal because he came full out like a race horse. None of the typical little hops and then check the surrounding area with a head high for this black squirrel (is that you Psycho? Why are you so thin?), but just straight at me, full speed. He climbed the leg before sitting almost in my lap (don’t you think we should date first?).
He took the first peanut and started to eat it there, I fed him another. And then he was off, dashing away again, not to be seen again. I see that this particular squirrel sees me in the category of “friend with benefits” since his style of cruise ‘em, use ‘em, and lose ‘em left me feeling a bit……used. Oh but when it comes to squirrel love, I am a slut; I let them eat in bed, and leave me covered in peanut shells, just keep coming back (no, I don’t need more human friends, why do you ask?).

Once the Squirrel Grapevine got around I had them lining up to take from me; this is just a sample of the video I will try to finish over the weekend so I can do a full squirrel video and round up next week, when I am not in such a “Uggggg....must eat brains” zombie mindset.

I met a new squirrel who was not only twitchy but actually a neurotic athlete. Just to point out, neither the black or the grey squirrels are “flying squirrels” who can open their paws to glide. No, this grey, after climbing Mt. Beth for peanuts, decided to use up his extra energy (do I detect a teenager squirrel here?), by leaping off of my knee. Okay, not that big a deal, a lot of squirrels leap instead of crawl down. This however was the first squirrel to leap HORIZONTALLY and actually made a little over six feet as he landed out of camera range.
I am left with a stupefied (and stupid) expression on my face as my nice “let’s all have a picnic” turned into the squirrel version of Mission Impossible in less than a second. In the video (next week) you can see him tearing past me at high speed as if he was expecting to be chased by police cars or something. Well, it takes many different squirrels to make the world turn; the polite, the users of innocent and emotionally vulnerable wheelchair girls (I’m looking at you Psycho!), the skittish, the neurotic and one squirrel we met today with a NEW disorder: agoraphobia. Not the best phobia to have if you want peanuts, the guy latched onto Linda and there was some weird squirrel mothering going on between them as he would only come out of the bush a LITTLE for her. I keep telling her she oozes ‘mothering.’ She says she took a test a work today, which concluded she is a “Nurturer”, and “even animal will be able to detect this trait.”

So if she is a “Nurturer” does that make me a “Vending Machine?” By the time I got home it was spasms, claw hands and the pain shudders, so after some pain meds I lay down for a couple hours of which I hope I slept some and then off to the dentist. I only passed out once, but lost eyesight in one eye and faded in and out. Who knew that getting stabbed by sharp implements a couple hundred times in the gums and having a mouth full of blood could be kind of taxing on the system? I told them that I wasn’t sure why I was so into getting my teeth in good condition (she said mine were tip top now), but at least if I die soon, if my mouth drops open in the casket during the funeral people will say, “Wow, she really kept good care of her teeth!”

There was some nervous, ‘you’re kind of creepy’ laughter. And I smiled, and Linda pushed me to the car, pretty much carried me in and then carried me inside the apartment and more meds.

There I started immediately on the final draft of a writing piece I had PROMISED to finish today for international women’s day (well actually promised to finish a few days ago but hey…). After nine edits of three drafts it was done. And now, my bottle of cheer wine is empty and so am I. Tomorrow, a new day, and hopefully a new corset (and better matched socks!).

I made it!

Wednesday, February 20, 2008

Because…..I want to live

In part, this blog is about what it is to be a person with a medical condition, a serious medical condition. So what about the times when it isn’t fun, it isn’t stable, it is beyond frustrating, it is beyond just lying down because you don’t even have control of that option? Monday started with trying to drink orange juice and falling down for a long time, 45 minutes? A hour? So no, no real energy to start the week.

Tuesday evening, I cried and cried for no reason at all. Not a dainty leaking of tears but a spontaneous and uncontrollable sobbing. I cried because I was so tired and I knew that wasn’t going to end. I didn’t ask for comfort, the tears came off and on for hours. It hurt to breath and when the time came to sleep, I couldn’t because each breath hurt, and with more and more sedation I lay there for an hour the bed elevated to keep the air passages open. I thought, “Why won’t they leave me alone, so I can die, but without all of this….this distraction.” But I said nothing. When you struggle and each breath hurts it is hard not to think about dying.

Wednesday morning, it still hurt to breathe, I was tired where I would have lain down and just stared at the wall if I did not need to get dressed for conduction testing. Try to remember to smile when you wheel past the neighbors, because I’m too tired to explain what this feels like; that inside my bones have turned the colour of ash. I am decay. But I don’t say anything. My heart is already erratic to the point that my body shakes and it is less than three hours from getting up.

I am asked if I am planning to go to the park, I say slowly that I can’t go that far by myself. Well, you should go to the park, I am told. I remind myself to smile. After testing, I sit and methodically go through and answer the comments on the blog, in case I am too weak later. It is a commitment I made and people matter.

I stare at the wall and wonder why I don’t fantasize about running or taking a trip or some aspect of my former life. I wonder why I don’t say no to doctors and how even though I don’t know how I will make it through tonight I will be making the two appointments I have for tomorrow, including the “Emergency GP” meeting which will mean I will have my afternoon sleep delayed.

Instead I think about why I haven’t sold off my collection of rare Victorian ghost story books. I think about talking to my neighbor downstairs about when they are away and getting Linda to help me move my classical double bass and bow so that I can practice and get up to a decent level before my hands give way entirely. I realize I won’t sell the books become somewhere inside, I haven’t accepted that it is over. And when I do sell them and think nothing of it, after the years of collecting them, then I will have held my mortality, and eaten it, so it is a part of me. I all think this while lying in bed, trying to sleep.

On the way to lying down I just risked falling down and heart pain because the toilet wasn’t flushing correctly. I pulled the lid open and after staring, fixed the problem by reattaching some rubber parts that were out of alignment. My fingers were dirty from the rubber and as this is the most “butch” thing I have done in years, I wonder as I wash my hands if I can call myself a ‘butch lesbian’ now, since I finally managed to fix something. I’m amused but too fatigued to smile, because there is no one here I have to force myself to smile for.

So now, awake again, as I stare out into the darkness, I am unable to remember if today was sunny, raining, or overcast. I can only remember that I must awaken tomorrow, must try to change my underwear before the home care for assisted showering arrives; and must leave early to wheel to the GP’s, then home to sleep. I need to sleep right away so I can wake to dress again to go to the dentist for an hour plus of cleaning and scaling. Then home to write the post for the day and put it online, at which point it will be midnight.

The dental scaling is the same reason I don’t say no, or just lie in bed, refusing to go to whichever weeks new “urgent” test or that “urgent” meeting. Because, I can’t, I won’t admit to myself that it is over, that there is no point in worrying about gum recession anymore. I cannot fantasize about another life because I don’t know what to fantasize about. It is THIS life that I want. I will cry again tonight because I am so tired, so worn down. But I will not change, not alter nor falter from what has been set before me.

I think back to friends who had chemotherapy and how sick it made them and how one it gave insomnia and pain for two to three days and just when they were caught up to the point of almost being sane, it was time to go again for another dose. And they cried and they lost hair and they kept going back for another dose when they were too tired to do or see anyone else. They wanted to live. And even though they didn’t know that the chemo would guarantee they would live, they would force themselves, still crying and shaking, if that is how it had to be, to be there for the next dose.

Someone who knows my history of needle phobia when they found out I had a second needle, completely un-sedated blurted, “How? That’s impossible for you.” How did I? How did I do something I had never done before not just once but twice for a test I still don’t know the value of? I did it because I want to live. And being asked to do one impossible thing after another with absolutely no promise of hope has become standard. I either must accept that my pain, and the anguish of these tests have no meaning at all or find a way to keep going. So then if I don’t die in the night, or trying to breath, or from heart problems then I will move an inch closer to something or someone who might say that however diminished or basic my life will become, I will live.

I continue not because of hope but because I refuse to abandon all hope. I know I am terminal, and I know that I still, in some way, must shelter a piece of me, a sliver which hopes otherwise. In Oncology, even when it becomes apparent that the Chemo is not “taking the patient to the brink and then bringing them back” that it IS killing them; the patients keep taking the doses. Too weak to be able to stop vomiting on themselves, they keep taking the doses.

I already have medical or disability appointments for the next two weeks. I keep fooling myself that I am still “searching for a job”, as if there was a job where you could take a majority of your time off in medical appointments, from day one. I have worked since November to find a job, to get regular care, to try and create a stable routine in which I can be secure. I have yet to experience it. I expect after my “Emergency” meeting tomorrow with the GP (and others?), I will have many more appointments, perhaps in other cities. And I expect I will go and do them too.

Today is a day I have a hard time picking up a can of drink and that is the day I start planning how to playing the double bass again? Maybe I am capable of fantasy. Or maybe, there are just so many parts of my life I haven’t faced, haven’t said goodbye to. Or maybe it is just part of accepting, wanting to play welsh songs in duet with Linda’s flute again, another memory to write before it is too late; before accepting it may be too late already.

I cry, I weep, I sob because it cannot be denied. But even still crying I go on, I continue and will continue because I am Elizabeth McClung, and while I live……I live.

Tuesday, February 19, 2008

Some days are Shit Days: Tests and Interviews

Let’s call this “Failure and Exhaustion” day. I was rather proud of myself this morning in that though I had a bad night, I had only called the care worker at 6:00 a.m. for painkillers. I told her I woke from a WWII dream where I escaped from a women’s prison to blow up a train: sort of Bad Girls meets The Guns of Navarone. Well, according to the care worker, I called her twice for painkillers, once at 6:00 am and once at 3:00 am. Needless to say after diminished sleep, finding out that I apparently called my worker and took opiates and remember nothing of it is rather disturbing (She says I told her about a dream that time too).

I was up early to go to the hospital for a chest X-ray and a Ventilation/perfusion scan. I had been demoted back down to “diagnostic” where people run tests until you are exhausted and WANT to die. This is punctuated by doctors/specialist visits where you are told either bad news or bad news: a) You have something wrong with you but of course there is nothing they can do about it OR b) This test indicates you need a bunch MORE tests. Since I have showed up “abnormal” on all the recent tests, I am somewhat reluctant to do MORE tests. We had the “Your thyroid is dying – bummer” test and the “You have secondary Reynauds” but there is nothing we can do test and then the “Your nerves aren’t working and are abnormal/abnormal and there is nothing we can do….but we want to do more tests.”

Anyway, the Ventilation portion of this morning’s lung test involves this little green canister and they put in NUCLEAR RADIOACTIVE material to make a radioactive mist which you have to suck down for five minutes. They clamp your nose shut and you have to keep your mouth sealed so the radioactive stuff doesn’t escape. Apparently the rest of the non radioactive air is oxygen rich, I couldn’t say because it was like trying to breathe through Jello. The effort for my ribs and diaphragm to pull in each breath was extreme. Indeed, about 30-60 seconds after we started Linda had to hold me upright because I was fading fast. When they said, “Um….her eyes have rolled to the back of her head.” Linda said, “Can you get her a cloth, she’s just warm.” Whatever. I couldn’t sit upright, I lost use of my left arm and couldn’t see but I kept thinking, “Keep the mouthpiece clamped in teeth” (mostly so I wouldn’t have to do it again). Eventually, I couldn’t even hold on with my right arm but I made the five minutes and when I could breath air again, it was like coming up from the bottom of deep water. Then the tech picked up the canister, and holding it as far away from him as possible took it out of sight (to the lead lined bunker, I am sure).

They put me on this narrow bed in order to take Gamma pictures of my lungs. Well first, when I was laid flat, I started making funny noises because I couldn’t breathe (but the techs didn't realize I was asphyxiating, Linda had to say, "she can't breathe."). They so they put some cushions under to incline my upper body so I could breathe (sure you deal with lung problems guys?). Then I was supposed to hold my arms in odd positions over my head for “only three minutes for each pictures.” Well, for the X-ray, they had a bar for me to hang onto to eliminate my weaving with my weak trunk support (I was also the youngest person at that particular X-ray station and the tech told me the average age for patients was 70’s). With the ventilation pictures it was simply impossible, particularly with my weaker right arm, so I told them, “Tie them together.”

The male tech just stared at me kind of confused and scared. I rasped out again, “Put my arms how you want them and TIE THEM to each other, I can’t hold them in position.”

He stammered, “Um…we don’t actually have the equipment to do that here.” What, no one has rope anymore. Actually the male tech rallied and said, "No, we just don't keep handcuffs here." So one of the techs helped me by holding on of the arms while I held a loop on the machine with my other arm.

Here came the time for the injection of radiation into my body. We had put on the EMLA (topical anesthetic), Linda was there and they would do our protocol which is; I get calm, I say “okay”; they clean off emla; they tap me when they are ready; I get as calm and as ready as I can then I say YES (well, actually I scream YES and then don’t stop screaming until the needle is out). Only this time I looked up at Linda and said, “We forgot something.” We forgot to take the sedatives. Fuck!

Linda convinced me that this was a VERY short shot and that I could do it and then it would be done. The male tech tried to grab my arm but I kept breaking free (if you try to hold down my arm I will strain until I either break free or rip my muscles – and it apparently makes the vein disappear) and he gave up on that. So I tried to calm down and after following the protocol I eventually started screaming YES, YES, YES, YES, AAAAAAAHHHHHHHHHHH!HH!!!

The tech said it was different to hear people scream “Yes” than “No!” Anyway, my first needle without sedation. I apologized and said I hoped the two people waiting were still in the waiting room later. They said, no worry, they inherited the room from the cancer people and it was soundproof. Linda said, “Hey, now we don’t have to worry about sedation effect with Monday Magazine.”

Monday Magazine? They decided almost 2 weeks AFTER I was trapped in my apartment to return the call and called literally 2 minutes before I left for the hospital. The writer, J. said, I would like to follow up but we go to press at 4:00 p.m. today. I told him I would be back from the hospital around noon. But I expected to be doped up and have no clue what use I might be.

Back to the radiation going through my blood. The male tech was giving the female tech some odd looks and they kept saying, “It takes up to five minutes for the radiation to spread.” Then the female tech left to talk to someone. Then more looks at each other. At this point I said, “I’m not going to spontaneously combust am I?” The joke kind of fell dead as the female tech came over and said. “All bodies respond differently.”


She continued, “We need to inject you again.”

No! No, no no. “This isn’t a dream?” I asked her, “Because I do actually have dreams very much like this, called NIGHTMARES!” No, not a dream.

“Really, you are asking me after I finally got the shot without sedative and know that I never have to do that again to now, right now, do it all AGAIN?”

Everyone looked pretty glum. And Linda didn’t say, “You can do it.” She said, “Just try and think about it.” I knew if I decided I couldn’t do it, she would have supported that. Of course the EMLA had been off for like 20 minutes. So I checked my arm and I told the female tech, “this spot seems to still be dead, can you do it here?” She said she could. “You only get one shot.” I told her. She told me, since it was radioactive material, she only got one shot either way. How…..comforting. Anyway, here I was knowing I was GOING TO FEEL IT this time and I told her to tap me when she was ready. After three minutes I said go and yes and then just starting screaming and screaming (Still a little hoarse). And yeah, I felt it, but she was quick and it was done. My right arm (the weak one and the injected one) was spasming all over the place as was my left. But they were getting their pictures. This is the perfusion part to see if the blood vessels are going to all the parts of the lung and exchanging oxygen. Anyway, at this point I had enough radiation that I can’t go near pregnant women for a day or so.

We finished up, and I was exhausted. But I went home and put all the photos from Fran and the nails in front of my door in a file along with my word documents and burned them on a DVD for Monday Magazine writer J. who came over at 1:20 and left at 2:00 with the disc and the interview notes. Either the stress, the radiation or both did a number on my bowels at I was sitting in the bathroom at 3:00 when J. calls (one hour to deadline) saying the DVD won’t show the data (I checked it on my computer before I gave it to him), can I mail him the word document and two photos he wants from the ones I showed him? Out of the bathroom, sending the photos, sending the word doc, sending another email saying all was sent. I get no emails for 10 minutes. So I go back to the bathroom. Quarter to 4:00, I find a 3:30 email, “Photos came through, where is word document?” I tell him I sent it first, send it again and Linda sends it from her work. No email on if he has received it, nor does he respond to phone calls at 4:30.

I go to sleep. I wake up 7:40, drained. Email from J. saying the piece was severely shortened and is depressed as doesn’t do justice to issue. Needless to say, this does not cheer me up or make me feel the work I did from 12-4 including a last minute 45 minute interview which ended with me on oxygen was worthwhile. Guess I won’t know until tomorrow or Thursday if I am a two line mention “Disabled woman on welfare kept in home” or the like.

Sorry, it has been a shit day, and looks to be a shit day for at least two more days to come. There was no way on earth I could make hours of tests and a couple hours of work of trying to get Victoria to realize that keeping people with disabilities trapped isn’t “a shame” or “regretful” but what the rest of the world calls a violation of human rights very interesting. It was a ‘slog though it’ day and this is a ‘slog through it’ post.

I don't think about Japan or cherry trees, just getting the next minute or thing done. The only Japanese related event today was trying to figure out how to take a small enough oxygen concentrator so that I can strap it to the back of my wheelchair (and find someone to rent me a smaller wheelchair for a month). I don’t dream of Japan right now, I dream of a day, maybe three weeks from now, when I DON’T have appointments for a few days.

Not going to happen for weeks to come.

Monday, February 18, 2008

How I rank as a "Hoe" and "urgent & immediate" tests: hospital tomorrow!

What does a disability advocate do between badminton and fighting forces of darkness (vexing Fran and Triumph)? Well first I checked my sitemeter and found that I got a referral from (From the “Kink Girls” section). Nothing like knowing how you stand as a Hoe. And just a public service announcement to the guy who arrived here after searching for “naked lesbian horse sex”: please, there are free 24 hour therapists, just pick up a phone.

Of course, no Monday would be complete without a message from “The Specialist.” A clipped phone message saying I must show up at the hospital the morning of Feb 19th for two lung tests before another test which has been scheduled (but which I am not to be told the date or time of) can proceed. It turns out that this was from my Heart Specialist, who I have not seen since April 2007. I was a bit narked the way they just announce the appointment from a specialist I haven’t seen in almost a year when Cheryl (who was visiting) says, “Isn’t the 19th tomorrow?” Shit! It was. Less than 24 hours notice? I called Linda who called the specialist and apparently these two tests have been designated “urgent” and “immediate” though no one is telling me why. And the tests were going to take more than two hours. I called Linda again and asked, “What kind of Scan takes over an hour, are you sure they aren’t injecting something?” This is because I have extreme needle phobia and need to be sedated for anything involving a needle and put under for anything prolonged because I also have “invasive body phobia” which means having an IV in me gets me very….agitated (like thrashing and screaming agitated).

The test after this is the 20 minute liquid metal though the IV into the heart, which now, after seven months the heart specialists say they WILL get an anesthesiologist for. Turns out the two lung tests which I was given less than 24 hours notice for DOES have a needle involved (what part of NEEDLE phobia don’t they get?). But apparently these tests are super important, and super urgent only no one will say why. So, hey-ho, a ton a valium and a needle I will go (just typing that sentence increased my heart rate by 20 bpm and makes me feel sick in my stomach)!

So, tomorrow was SUPPOSED to be the day the tech support person was coming to install DRAGON naturally speaking 9 and help me set everything up. But now, I can’t do that until next week because I have medical appointments every day this week. Shit! I worked so hard for Dragon and now I have to delay it to get a needle? Anyway, my GP called last Friday to book me an emergency meeting for 40 minutes on Wednesday; but as I was booked on Wednesday so now it is Thursday. “What is it about?” I asked.

“It is an important information and planning session.” I was told.

What does that mean? I still feel like I have been called to the principal’s office.

For those who want some circle of life irony: in a long conversation on the phone I determined that my father has a series of rather serious neurological issues including: fatigue, brain fog, trembling of the left arm and hand, deadening of the left foot, dramatic loss of vision in 6-9 months, inability to stand for more than three minutes, etc. I methodically, on the phone went over every part of his body and what is it like now and what was it a year ago. If there was a change I said, “Write it down” until he had a list to show his doctor. He saw his doctor today who has immediately referred him to a neurologist: has referred him Dr. A., the same Neurologist who hasn’t returned any calls from my GP for 4.5 months. I have to wonder how long his condition would have continued unnoticed if I wasn’t so “expert” now in all the various possible neurological symptoms. I only have to hope that Dr. A. (the one who put me down for “Conversion/hysteria” and wasted 7 months of testing), sees and does a better job than with me. Bitter? Me? Nah.

I also got a call that a swallow/speech therapist would be coming on March 4th to watch me eat a meal. I guess the concept that I might be doing something on March 4th already is impossible. I told someone at boxing that I don’t know if I handle the hours of testing as it is like having a job. They said, “Yeah, but you don’t get paid!” Always a joy to share your problems with others.

I guess I am so tired that 14 months on and we are doing round… Eight? Ten? of DIAGNOSTIC testing. We all know what I have but I guess this tells people how it is affecting me or has spread. I am just tired of it; treat me or let me have a life where I can plan DOING something because every single day for as long as I can remember has been full of meetings or testing (or dental work – or both).

My care worker tried to cheer me up by saying, “Hey, at least it isn’t the Barium Enema this time!”

Yeah, feel SO much better now!

Sunday, February 17, 2008

More wheelchair badminton, a friend to visit, and neurosis tennis

When I put out the call for family after the New Years, many followed up, some with emails, with others sending me care packages which I TOTALLY mean to reciprocate. One person, Cheryl volunteered as Sister (I was a little unclear on whether that was “Sisterhood” with upraised fist or ‘I get to tell you how you really should be living your life’ older sister-hood?). She also offered to visit because she lives in Port Angeles, which would normally disqualify her (Skary Town) but she is a genuine US Forest Park Ranger (thus works in Olympic National Forest). And she was an EMT, and used to live in Death Valley. On the down side, spiders, of which I am phobic about, seem to love her as she has been bitten by black widows TWICE.

Anyway, she came for a visit and we played some air hockey and in some sort of fluke, in both games we tied (6-6. 4-4: not that I am so competitive I would remember the exactly scores). She however kicked my butt at pinball. What I found out is that a) I talk too damn much and b) When I talk too damn much for several hours then I have health problems (for up to two days after). I have “Hostess Complex” where you compensate any feeling of anxiety and worry that your guest isn’t having a good time by talking non-stop which just ends up making people thinking you are “okay, nice….but a bit of a loon.”

Anyway, after my Wheelchair Badminton is possible for a LOT of people post, Cheryl said “I have no hand eye co-ordination.” I challenged her to come back and just give it a try, and I would supply the wheelchair. Cheryl has some horrific thing with her back (the words crushed and vertebrae are in there) which means: No running, no walking fast, no leaning over, no bending, none of that. She can however sit and lift her arm above her head. So today, after she got off the boat from Port Angeles (and was pulled over again by customs because apparently the “I am coming to meet someone I met on the internet” is the WRONG answer to “Why did you come to Canada?”) we collected gear and headed to the Y.

After 20 minutes of the hit and miss of “I haven’t played this since a kid” Cheryl seemed to be getting the hang of it. And then, once we started playing a doubles game (with points) I noticed that Cheryl’s hit ratio went WAY up as she had Linda running here and there. After doubles we had a short game where I played Wayne and Cheryl so Linda could take some pictures and film and I hope later this week to make a quick video to convince you that YES, wheelchair badminton IS a fun sport, even for two wheelchair users. And it doesn’t matter that if after you finish your game of badminton, you can carefully stand up and walk home. Because a wheelchair is a mobility device. And if a wheelchair helps you have fun for an hour that you wouldn’t have or be able to do normally, then use the wheelchair! But if you CAN stand up afterward, then that is why you get the crappy extra wheelchair and I get the custom one.
Anyway, you can see here that Cheryl, who said quote “Badminton really IS slower than tennis” is in a very short time, not only matching my vast four weeks experience but is kicking my butt. Turns out that hitting long wasn’t a problem for her, must be those special Forest Ranger muscles. Anyway, it was nice to play a game of doubles with friends and thanks to the program director Wayne (in Red) for doing doubles with us. I promised I would TRY not to fill his entire badminton drop-in days with friends in wheelchairs. Not that it is such a bad thing! It is just we need to find enough able bodied people to do the running around in doubles while we sit there. Remember, able bodied people have uses too!
We hoped to have Thai for lunch afterward, but the restaurant had the “Now Open 7 days a week” sign as well as the “Closed” sign, so we headed back to our place only stopping by to visit some friends at the cemetery (second oldest in Victoria). There is one guy there who died at 37 and they relatives listed not just the years he lived but the months and the days too. Guess people in the 1830’s had OCD too (Does it really matter if he lived 37 years, 7 months, and 6 days or 7 days?).

That’s one of the reasons I have been a bit quiet today. The other reason is that my hostess syndrome is in high gear and that means I started the day with opiates (can’t sleep, a guest is coming!). I have been on oxygen a couple times and lost speech a couple times today already (at which point I keep going in sign language, which induces Linda to try to strangle me). So while I was sleeping Linda and Cheryl went out and got me a pack of Twinkies by HOSTESS. I think it was a hint. Or just some mockery of me.

Also, as I slept for two hours, Cheryl and Linda, who both have family cattle farming background, did the farm talk. This has reawakened my paranoia which goes a bit like this: Linda has put up with me for years because my neurotic and health issues are countered by your good parts. But now, she is meeting OTHER women, women who have connections with her that I don’t and who can talk to her and focus their attention on her and aren’t near as big a mess as I am (not actually talking about my physical issues, more my big squirming bag o issues). So, to counter this, I blurt out to Linda about once an hour this evening, “You’re going to dump me and then, because if you marry her, she can legally become a Canadian citizen, you are going to move in with her, aren’t you? Aren’t you!!” That is really reinforcing how I don’t have insecurity issues. Particularly when I accused her on Monday after I was doped to the gills and so sick I couldn’t move that she was going to run away with my caregiver (who is straight!). Linda finds this funny. I find that saying, “I don’t have insecurity issues, I don’t have insecurity issues!” over and over doesn’t really help.

So, it is sort of fun for the visitor who comes to see us because you get to see me play neurosis tennis with myself bouncing from “I’m such a bad hostess” to “You and Linda are the TRUE soul-mates aren’t you?” Anyway, even with all that, I am actually having fun and I did play badminton and even though I have at least one appointment every day this week, I managed to forget for a few hours today.

So come and join the party, the more the merrier (and we can always play wheelchair badminton!).