Sunday, March 30, 2008

So far...not so good! The first day.

I am writing this on the hotel computer (typo and spelling apologies). The PLAN was to proceed from Cheryl and the oxygen concentrator to the hotel, with a single stop: arrive at 4:00, take a nap, then a slow evening and a long overnight rest. That way next morning the three hours at the airport and the 10.5 hour flight and the 3.5 hour train ride won't seem SO horrid.

Well, first we stopped to pick up a $100 camera in case what happened two vacations ago happened again (Camera and pictures lost in water). Also, I can use this as my "Crip Cam" while Linda is off looking at the sights with stairs, and I am people watching. We managed to pick up a Canon that was the earlier model of the camera we have now so no big learning curve and hopefully can use the same software. I went to Borders where I was obsessed to find a book, which I finally remembered the author but they had sold the last copy (30 minutes on that grail hunt).

Unfortunately our drivers, while well meaning, got lost many, many times and this created high tension as well as extra due to traffic and other issues (like being stuck for a LONG time waiting for a parked train). I ended up in sort of semi-comatose mode where I am actually PRAYING to pass out, but don't, just feel worse and worse. I could not assist myself in and out of vehicle, or swallow, or have trunk or head self-support. We arrived at the hotel which we were assured was "completely quiet" by our drivers who booked it. It is not only at the junction of two major roads but UNDER a flight path. It took two valium and I don't know how much loss of sanity to get 90 minutes sleep.

Yesterday, due to a body meltdown, I did not sleep until 3:00 am. So today was going to be the "catch-up" day, where I got a full nap and 8+ hours sleep. Linda and I are right now making a reservation ELSEWHERE for coming off the plane as obviously the hearing of our drivers is slightly different than ours (and other humans who seem to hear planes going overhead every two minutes). So we are in the horrid position of HOPING that I can "catch up" and get some REAL rest while sitting upright on a plane for 10.5 hours. When that is your major hope, you know how screwed you are. There is also a plan to make a nest in the bathroom for me tonight in hopes to lessen the noise a bit.

This plan was based on making each day, yesterday and today so I got STRONGER heading toward the flight. That hasn't happened. I can't "will power" through my condition and deterioration when I don't sleep, and believe me, I have tried a LOT of prayer. Right now, as strange as it is to say, we are just hoping to sleep at least 6-7 hours tonight and then get to Japan and REST there (what sounds wrong with that plan?). Still no news on the train reservations. Lost swallow function and partial eyesight today but I think the rest I did take over the last week or so has given me a little buffer zone which has stopped complete degeneration. I have to hope I still have a bit of that buffer left. After the nap I was able to eat again, Linda kept putting pain and valiums in my mouth earlier and trying to get me to swallow so I could sleep (some worked). An act of love indeed.

Anyway, good thoughts, prayers, and any other immediate solutions would be appreciated. Off on the morning - just hoping for eight hours sleep between now and then (PLEASE!).

Well, this is why travel is never the same twice, eh? Always an adventure.

Saturday, March 29, 2008

Goodbye! Let's hope I get there.....AND back.

For some reason, while very nervous, I also have an odd sense of calm. Unfortunately this is because I have a secret conviction that I won’t be coming back. I have spent so long imagining what it would be like to take this trip, weighed up a few weeks back if I should cancel, decided to go ahead, and I have no idea what lies BEYOND. I have no idea really about what lies in Japan but maybe it is easier to think about what might be there than about coming back to another year and more of unrelenting tests.

Of course, Linda’s parents calling tonight because they feel the same way does not help this stubborn conviction that I won’t make it back. They worry because they might come and rescue us from BC, but Japan, not possible! Actually calling to say you anticipate my speedy hospitalization on the eve of departure is well, hmmmm……ONE way of showing you care (perhaps not the most ENCOURAGING!).

In the same way people follow my rants, antics and meandering, I have been following a lesbian couple for a year through YouTube. Natalie and Naiyeli are youngish: 19 and 24 (if ages posted on YouTube can be believed!) and part of their relationship is doing music videos of lesbian/yuri themed anime as well as making little lesbian themed anime videos for each other at Xmas or Valentines Day. Just over seven months ago they celebrated their first year together by making Dedication videos. Naiyeli’s is here and pretty much captures all that you could want for a couple in love. It also captures the thoughts I have been having about every little thing that Linda has been doing for me. That I go to Japan, whatever happens, is because of Linda, and that makes me a very fortunate individual. That over 14 years later, she made my dream into “our” dream. The song is You Raise Me Up by Secret Garden and for the animed music video, Naiyeli’s sings it HERSELF for Natalie (and a fine singer too). It is the kind of tear-jerking video that makes me think “What’s up with this new generation of lesbians! Why can’t they be all twisted and closeted like we were!” – oops, knee jerk response, I meant, "it makes you realize how precious love declared and reciprocated is." Just watch it (hanky warning!)

After tonight, I may not be able to consistently reply to every comment but I will be reading and appreciating them (or having them read to me). I realize that in disability world, a trip to Japan is pretty privileged and I am fortunate. My hope is that you can feel you are going WITH me, instead of being left behind. It certainly hasn’t been all smooth and I apologize if you received a snappish email or comment or blog post over the past month.

Linda started the day today in a bit of a panic as her booked appointment to do BLONDE highlights (yup blonde girl and pink/red head, we are SO going to fit in), was “double booked” and thus cancelled. She found another spot but then I wasted an hour because she was away and I couldn’t sleep with visions of her hair falling out or her so freaked out with stuff to do she was in an auto accident (Me? Worry much? Why do you ask?). So when she came home and I finally slept (say hello to my friend VALIUM).

We have done the final checklist. I tried out the new wheelchair today and it sucks but will work. It is like riding a bike that is really small so you can’t get any strength in the pedals. Or specifically, the wheels are small and the axle is set FAR back, so I actually have to reach BEHIND me to start the wheeling. Not exactly a power position. Also, I haven’t found a pair of gloves to stop the slick metal on a down slope, but I have some goat skin ones I am going to scratch up and see if that works. Also, since it is a swing away post-polio chair, it has angled foot plates which look like a cowcatcher from a train, except my toes (the ones I can’t feel) overhang the front part. But like I said, it is 26 inches wide for Japanese doors and it will DO! But, I wonder what I will be happier to return to, my home, my hospital bed, or my wheelchair?

I have two more hours to get some things done, including a final edit of the BBC piece; will try to put a short update post from Seattle if they have a connection and then it is off to the body cavity search…..I mean airport security. We have enough pills to be dealers if we weren’t such nice people. I mean, 6-8 synthetic opium a day times 20 days looks pretty damn suspicious (plus the other 8 different pills). Cheryl has our oxygen concentrator (meeting her tomorrw), which is a mini-steam punk machine that hisses and huffs and will go on board the airplane with me. I bet after seeing all my crap and noise, people will WISH they had a baby next to them.

We hope to upload pictures as we go...if we go: as so far, after a promise last Saturday from JR that they would reserve our train spaces for the entire trip, we have gotten: two requests for additional info, request for scans of our airplane tickets but not a single reservation. Anyway: on to Tokyo!

Friday, March 28, 2008

Attempts to leave with sanity: One more pound of flesh

It is now my Nth day and hours that I have actually done anything for myself OR taken “me” time, OR not been under this weird relentless pressure and I am ready to blow because THEY just won’t LEAVE me alone (that kind of statement foreshadows a lot of cats, living in a old Victorian house and only emerging to scream at children to “get away you little hooligans, I KNOW WHERE YOU live Tommy McCulty!”). No, don’t have a balanced mind, didn’t have tea party, didn’t flash titties because had crappy weather and couldn’t leave house (oh, I know everyone in Canada has it worse, but since they don’t need to test their new wheelchair before using it on a trip…..bah!).

I worked, after boxing straight, until 2:40 a.m., when: two pain pills, the extra strength muscle relaxant, codine, sleep sedative and valium eventually put me to sleep. But only after I dictated to myself the names of the Sun (out loud) as called by each culture through history (it helps when you hallucinate to focus on a topic because then the hallucinations can turn to dreams). So, on the bright side, you don’t have to be the home care worker who has to listen to me at 3:00 am mumbling and yelling, “Sol…Icelandic; Ra – Egyptian; Sura – Sanskrit; helios – greek…..apollo…..Sol….Roman….chariot….oh…..son of…..named…name.. Phaeton!; Babylonian name….babylonian name…SHAMASH!” Yeah, fun at night.

Anyway, I was expecting a call from Monday Magazine to interview me for this “special calendar” today which I won’t get to see as it comes out Thursday (boo!). So at 10:00 am, I heard the phone but by the time I made it out of bed, to wheelchair, etc, the phone was dead. I had less than seven hours sleep again (third day in a row!). The last TWO days I had been awoken in the afternoon to go do physical activity for my long term good. But my short term pain and endurance were at an end.

I received another call from Seattle regarding Japan wanting to talk to Linda; I get these every day, I give the number for Linda every day, I continue to get the calls. Then there was the interview for Monday Magazine which took an hour and lasted until 12:00. It turns out they want to do an issue dedicated to disability and accessibility because the person interviewing me: his partner has recently started using a wheelchair. So a lot of what we talked about they are using NEXT time. Oh well, I mentioned that though I was told on Tuesday that the photographer would contact me, they hadn’t yet and I was leaving VERY soon, and with the snow and sleet outside today didn’t really seem a good day for photos. He said he would contact the photographer, J. He also wanted me to write a “quick, precise description of what my condition IS exactly.” God, we would ALL like that.

Well, I got an email and then a call from S. who said that the photographer would contact me and that the photos should represent what I talked out in my answers to the questions – the written aspect of the interview (What I was doing all of Wednesday). I said that while an overcast sleeting day might NOT be the best representative for my Victoria I would send them some photos that would. Because, in my experience there are the 3000 pictures Linda has taken of which some are simply amazing, like this one.
And I doubted that the photographer had the patience, that I had the time or we had the weather to come close to duplicating them. Also, I asked S., do you know I am in a wheelchair and disabled? Well no. And how do I GET to these particular locations? Because I cannot drive due to a passing-out issue. Hmmmm, she had no clue. Or rather “Golly, that’s going to be difficult.”

So the next two hours I found and send her the original and oversized pictures (1600x1200), 15 in all, some cemetery shots, some squirrels, some playing air hockey and pinball, a few of me doing boxing and other activities. Then I worked on the “short definition of my disability/illness, etc” and sent that off. So, I have not actually done anything today so far, except start the laptop which I am supposed to be transferring data onto for the trip (like our music, some things to watch, some photo editing programs, etc). It comes up with BLUE screen and cannot load, then gets stuck in an “attempting to correct start up error” for 40 minutes and won’t let me shut it off. Did I mention how much I LOVE Vista by microsoft?

During this time I have MANY phone calls, all seeming to want something. This includes one call from a hospital in Vancouver who is going to book me for a nerve test at the Vancouver hospital. This is how the conversation went (no, I’m not making this up).

Me: “Hello, Elizabeth McClung”

Her: “Can I speak to Elizabeth.”

Me: “Speaking, you are speaking to Elizabeth.”

Her: “I need to speak to Elizabeth.”

Me: “This is Elizabeth.”

Her: “Oh…..I am calling to book you for an appointment.”

Me: “Can you tell me what type of an appointment and where.”

Her: “It is at the Vancouver Hospital, I need to book you in for a nerve test.”

Me: “Okay, but I need to tell you I will be away until April 18th on Vacation.”

Her: “Okay, we can set a date for the test, what about next week?”

Me: “As I said, I will be away until the 18th.”

Her: “Oh right, I will call you on Monday and we can set up a date after the 18th?”

Me: “Except I will be away until the 18th of April.”

Her: “Oh…actually they asked for a very specific neurologist, I have to talk to him to find out what time HE is available and then I can book you. Okay.”

Me: “Sure.”

Her: “So, once I talk to him I will call you on Monday and we can set a date.”

Me: “Except, as I said earlier, I will be away until April 18th.”

Her: “Oh, so I should call your specialist first, and she can talk to you.”

Me: “My GP has been trying to get my specialist to return a single call for four months.”

Her: “So it would be better to call you on Monday, and we can set up something together then.”

Me: “Except I will be away until the 18th.”

Her: “Are you saying you won’t be here Monday?”

Me: “Yes.”

Her: “When do you leave?”

Me: “Sunday.”

Her: “That means you won’t be here on Monday.”

Me: “Yes, I will be away from Sunday until the 18th.”

Her: “Oh……..”

Me: “Can I ask, do you know that I am in a wheelchair?”

Her: “No.”

Me: “Is it far from the Ferry to Vancouver to the hospital.”

Her: “Oh yes, it is an hour….no, more than an hour… least an hour.”

Me: “By car?”

Her: “Yes.”

Me: “But I don’t have a car, how would I get there in a wheelchair?”

Her: “I don’t know.”

Me: “Uh….thank you. Can I ask, does this test involve any needles?”

Her: “Oh yes.”

Me: “Were you told I have a needle phobia?”

Her: “No….should I put it down? I’m sure the specialist would have told us if it was important.”

Me: “I’m sure (spoken with dripping sarcasm). But maybe you should put it down. How many needles exactly?”

Her: “Golly, I don’t know!”

Me: “It is just I need to know how much sedation I will need.”

Her: “Oh, well there are needles.”

Me: “What IS this test exactly?”

Her: “They put the needles into you, into your legs mostly.”

Me: “Would this be the test where they take an electrode needle and shove it into the leg until it reaches a muscle, and they do a lot of them?”

Her: “Yes, that’s it, but they use a different number of needles each time.”

Me: “But basically the WHOLE test IS putting needles into me.”

Her: “That’s right!”

Me: “And then they start sending electrical charges though these needles into my muscles…just like a nerve conduction test.”

Her: “Yes, it IS a nerve conduction test.”

Me (slightly green and contemplating never returning from Japan): “Thank you, that was very informative.” (40-100 needles would be normal, apparently your legs are covered in blood at the end)

Her: “Okay, so I will talk to the neurologist and then I’ll call you on Monday.”

Me: “Actually, I won’t be here, because I’ll be away until April 18th.”

Her: (confused voice) “Well, I guess, I will call you sometime?”

Me: “Yes.”

At this point, my home care arrived which I needed to be with and supervise to do all the cleaning so that we can leave here with a clean house – she did the laundry and hung it up and then we did the beds and sorted the bathroom. At this point Linda called to let me know that, the bread was moldy so she was just letting me know that there wasn’t any lunch today. “Oh, okay.” Perfect!

I couldn’t find the Gatorade containers for the worker to make more from powder and needed Linda to tell me where they were (After 15 minutes searching), but she emailed to say she was in a meeting. Meanwhile I had JUST started on doing the data transfer, had not started the BBC article I need to finish BEFORE I leave. It started to sleet outside so my plan to go out to Cook Street Village to get a sandwich was axed because we had scotch guarded my rain coat AND my lap blanket and they were both drying out. I did what I could but with the home care person behind me and trying to find the pictures for Monday Magazine, her chewing gum in my ear was not really helping me. In fact, I had been swearing a blue streak for about an hour. Linda called and told me that she had decided I shouldn’t have the home care person do the Gatorade. So I told them they could go early and was a WEE frustrated that I was fucking central station to whatever other people decided. I tried Monday magazine to find out….when is the photographer coming today? By this time, when the home care person left it was 3:00 pm.

By 4:30, I had finished the task I had hoped to finish last night, the data transfer. And now I got a email from S. saying that she would forward the pictures to the photographer J. but didn’t think they would work and he would contact me “sometime tomorrow” for a photo shoot. Please remember that this is my CALM week, when I am calm and NOT having to take sedatives for each nap, which I was supposed to take at 3:00 each day to optimize my rest. Only, yesterday, two surprise OT’s show up for over two hours, today, I am awaiting a photographer all day who will not speak to me and will “see me tomorrow!” FUCK! You know, I might want to take tomorrow to finish packing and I dunno, take some time to myself?

Well, Linda arrived home because when I cannot help but swear continuously it is a sign I am already past “break down.” She arrived at 4:30ish and had some food, which was my first all day, along with a Gatorade. We talked about some things, because there were MORE emails and MORE things to do. I got to bed about 5:00 only to have the phone ring; it was Monday magazine and Linda took it. She told me that they couldn’t use my pictures, but the photographer hadn’t seen them because ‘he is away all day on a course’ and the photographer would contact me “sometime tomorrow.”

I asked Linda to call back and give me the phone in the bed. I asked the person if they had YET read any of the material about me, that I was being interviewed because I did disability rights because I was disabled? No, she didn’t know and asked how I was. I said, not well, as I was talking to her from my hospital bed.

“Oh no, what happened?”

I told her that actually that ‘what happened’ is normal life and I spend a lot of time here. That I have one of the quickest and most extensive degenerative diseases which affects almost every life sustaining, motion and pain related system. “Oh.” Yes, and that I tend to average three hours of being “good” a WEEK, and so, when you don’t talk to me for a week and then expect me to pop up all over town, that might be difficult since I cannot fully dress myself without assistance, but since Monday Magazine IS the alternative paper, me showing up nude might not be a problem? I said, “as of now, you can come and take as many pictures of me in the hospital bed as you want.” No, she repeated that they needed me in pictures of various locations all over town. Well, I said, since the EMT’s have picked me up from just about every downtown location, I guess that MIGHT not be a problem. She seemed kind of flummoxed and told me the photographer would call me tomorrow.

I was PISSED because these people don’t seem to understand that I have a FINITE amount of energy which, in going to Japan, or leaving this city to start that journey, I might have OTHER things I will want to use that energy on. And that you cannot wait a week, leave a person to use all their energy waiting on you today and then expect them to drop everything at your beck and call and get all gothed up and zip around in your manual wheelchair all over town so they can snap a few pics. It seems they DO need a disability issue of the magazine because the people themselves don’t understand that people with disabilities might…wait for it…require accommodation. And that isn’t,. “the person with the disability will accommodate their entire life for the convenience of the able bodied person….when the AB person finds it convenient.”

They said that my resolution on my camera isn’t high enough – it is 180 and they need 300. And maybe I could have downloaded that by saving the files as .TIFF instead of .JPEG except Linda, being kind and listening to my concern, in the previous hour had deleted ALL the photos from the chips, including the last few squirrel trips. Which I thought meant, FUCK, I was going to have to spend my last day as I spent, Friday, and Thursday and Wednesday, at someone else’s desires. But then I remembered. Wait a minute, on Feb 20th 2008, they printed part of picture of my door, with the small piece in Monday Magazine about the carpet tacks. That was MY picture, from OUR camera. Hmmm, seemed okay quality then? Anyway, I will see what tomorrow brings but right now, I have to start the BBC article. So I wish I could tell you what a LOVELY day this has been but instead it has been a lot of not getting much in the way of TLC and a LOT of people either dense or not acting in a timely manner, or both. And even more things where they must be done “now, now, now” or “wait and we will get back to you.”

I now have 1 month to finish my story for the anthology I was ASKED to be in – no, no excessive guilt here. I am determined, when I return, besides recovery, I will ONLY focus on doing that story (or two stories) in order to make the deadline. When someone ASKS you for a story, is willing to pay, is going to publish it in a semi-famous anthology; even if you have spent two months focusing on Japan instead of finding the time to write it all out, you find the time. So that is what I will do, I will FIND the time.

This is Elizabeth, mid-breakdown, with one day and a few grams of sanity left to go!

Signing out.

Thursday, March 27, 2008

Up and down the skin color chart; snow and new beginnings

I spent the whole day with appointments I had forgotten I booked, including returning from one to get a phone call two minutes later from two Ergonomic Occupational Therapists (Whatever they are). They were coming over, and stayed until 5:20 when I went to sleep and was woken by Linda to go up to Boxing, so I could sweat and get the circulatory system going before Japan. She actually said: “You need to get up to go boxing, I know how much you WANT to go.”

I can tell you, going from a dead sleep to going up and hitting a heavy bag and then not sleeping tonight because I will be in pain is not my description of I “want to go.” But more like “NEED to go.”

The bad news was that with the previous week getting my finger jammed I didn’t sweat so it was REALLY hard to convince my body I was serious. Translate that: I boxed until my eyes rolled back and I fell over and they rolled me outside on oxygen. I kept trying to go back inside and my volunteer would say, “You’re not going inside until I can understand what you are saying.” And I would raise my arms and go, “Fuuuuhrhr” Which was as close as I could get to “Fight! Let’s go fight!” And she would say, “Yeah, not getting that.”

It snowed today. I just wanted to throw that non-sequitur in for Neil and all those still snow bound (Lene). Anyway, I finally got back in the gym and got to punch and punch; and the sweat came! Woo Hoo! Anyway, by the time I got home, I was SO high on endorphins that I talked non stop, but so fast that I was a bit daffy duck. I heard Linda telling the night care worker to watch out for when I “crash.” Me? Crash! Never, I am SO looking forward to Japan, because I HAVE my wheelchair, though it has a different balance so I keep not flipping up correctly. And if I feel like this over there I could wheel forever! I am guessing my endorphins might be a bit of a cruel mistress and leave me twitching and groaning later tonight. But no reason not to enjoy the ride for now, right?

We scotch-guarded our raincoats again, which got us high (like I needed that!). The ergonomic OT’s say they can work with me to get ahead of the curve of my degeneration. And I can get a computer mouse that is clipped to my workstation and I use my forearm to move it around (because I have better gross control than micro). They also said they can do something or adapt my motorized wheelchair so it uses gross and not micro motion so I am not so scared of it (and so our doors are not QUITE so battered by it).

The other good news is that I have gone back UP the ladder of Reynaud’s, as for a few days my “Red arm/side” and “Yellow arm/side” had gone down the ladder to the Yellow arm and the purple arm. Well, that isn’t good because the next color is Purple arm and blue arm, then blue arm and black arm, then no arm. So, while yellow shows that the right side isn’t circulating as good as the left, yellow is still much better than purple. And we don’t want to go down that chain, at least not for now. I am a little concerned as I lose strength if I ever get bed bound for a while and can’t exercise to sweating level (which badminton doesn’t), how long will it take to go down. It seems about 14-16 days right now to go to the next level. Probably very boring reading for you but actually WATCHING your OWN limb lose circulation as it heads toward gangrene and amputation can be rather riveting.

I have done nothing fun for days and am getting the “itches”, I want to DO something! I want to have some me time, put up a blanket and make a tent and have a tea party with my plushies – either that or pull up my top and flash my titties while rolling downhill. Sort of tie on which to do (I know which Linda might prefer). So might need to include some me time, which I am NOT going to get tonight nor tomorrow as I have the interview and the photographer coming.

The odd good news for today is that checks are coming in: Blue Cross payments finally arriving, refunds for things we had forgotten about. Good since the dollar is dropping like a stone against the Yen. The best news is that Linda stood firm at year end review about asking for TRANSPARANCY in regards to her Management job and development. She was stuck between me going, “You call me once you send that email?” and the fear of her boss…but she sent the email. Today her boss walked up and handed her an envelope with three lines saying that due to her assumption of new duties, congratulations and her new pay (we would say a raise except it what should have been paid a year ago). So, at last, finally, after a year of turmoil and feeling exploited Linda is relieved. Which means I am relieved (because people using my partner and treating them badly makes me a wee bit irascible). So, hooray for Linda, she made meetings with the boss of bosses and asked for explanations and while none have yet been given, the mystery envelope arrived.

So, we are feeling sort of in the midst of a calm, snow and all. Preparing for a new adventure, and maybe some sort of better, and a little less stress in the life afterward. We did the postcard addresses today and I am really looking forward to sending them out to everyone. Because I really do feel that without the support, encouragement, gifts of cheerwine, buttons, letters, and other gifts given as well as the comments, emails and calls that I would not be as sane or ready to face this big unknown: Elizabeth’s big international expedition!

Wednesday, March 26, 2008

Wheelchairs: why do they make SUCH a difference?

Today was a “Blech!” day in many areas I know I don’t want to talk about. So, what else?

I saw a 2007 film called He was a Quiet Man. It depressed me a great deal. It is about a quiet man who is stepped on in work and plans to shoot people; plans it every day and does nothing. Only one day, a co-worker DOES shoot people including what he thought was the office bitch, but instead hit Vanessa, who is described by everyone as “her smile could light up a room.” Only, that the ONLY description of her that is ever everyone. When the shooter realizes that Vanessa is still alive he plans to shoot her and our ‘little man’ comes to her rescue (becuase she is the girl he fantasizes a relationship with...but never talks to).

I watched this film because it said it was about two people, from different worlds brought together by circumstance, and one was a female in a wheelchair. Only it turned out that this film articulates every spoken AND unspoken clichĂ© about women in wheelchairs. Vanessa is a high level quad and thus hates the man who saved her; until he agrees to kill her. So, we have already gotten, in five minutes to Million Dollar Baby. But when he is to let her roll in front of a train, he stops her, and she gets so UPSET that her finger twitches. there is hope and suddenly all the powerful men who loved Vanessa (and who she openly admits she manipulated and gave head to in order to advance) are interested in her again. Only our ‘little man’ HAS her, wants to be the only person she needs because it is the only way his dream can play out of beinging with her.

They go sing at a bar, and people look at her, and then don’t look at her, and then pity her. She is embarrassed and as she is wheeled out people turn to each other and say, “God, I am so glad I’m not in a wheelchair.” Which people who don’t realize how sensitive my hearing is have said about me. So this film takes a women who is a very beautiful woman but a manipulator and shows that life in a chair is only humiliation (including from former colleagues she stepped over pitying her), pity, and dependency. Meanwhile she is still being idolized and treated like a literal doll by the man who cannot handle her AS an able bodied person, or even as someone who disagrees with him. As for Vanessa, she learns nothing except that as more motion returns she can return to manipulate different men. So everything about women in chairs was reinforced: objects of pity, objects of desire, idealized women BECAUSE they are helpless, women clueless how embarrassing they are because they are still alive. The whole bag. No one seems to bring up that maybe it is who is IN the chair that makes a bit of difference. Nor is she ever in anything but a classic hospital chair. She never goes to rehab. Just, straight to fantasy land where she can be carried around and fed and her witty banter that kept so many men occupied now keeps this little man occupied. I would think it is not very affirming for guys either.

So nothing really about what being in a chair is like, nothing actually about the points OF feeling suicidal except the assumption that unless complete recovery is held out as hope, all people, and PARTICULARLY a woman would want to top herself. So I guess I am not giving this a high review. It was painful because I got to see in a blunt and unrelenting way for a few hours how many people see me. This was reinforced the next morning (today) as I was down at my wheelchair and medical equipment retailer getting my rental and taking to the new guy they hired while they had the chairs in the back. I explained how, for about 14 months I have looked for ANY work and he said, that I should try applying at Easter Seals and Queen Alexander Hospital (where I got my seating clinic done). I was irritated that again, the only place for crips is with crips but I listened. He said that the summer camps were doing their intake. He said that he was a counselor and while I couldn’t be a counselor I could be an “assistant” (he is 10 years younger than me). Oh, I can be an assistant? Okay, well, he worked there several years, how many people in wheelchairs did he see working there? He thought a bit and finally said, “well none, but there were people with other disabilities.” Quite frankly, I am really tired of this, the way that AB’s just don’t get that someone with acute diabetes and someone in a wheelchair are NOT the same – yes, both have a disability but NOT the same. So, while I refrained myself from screaming as this guy who knew nothing about my condition gave me career advice, I asked, "So how many CHILDREN did you help in wheelchairs?”

He stopped. “Well, they come in different weeks, like one week of autistic kids and one week of deaf kids.”

I said, “And what about kids with Spina Bifida? What about the kids with CP? What about Spinal injuries? Any kids in wheelchairs at all?”

He thought some more and then said, “Uh, no, none that I worked with.”

Okay, so here is a guy in a wheelchair store, talking to someone who is on the ground because her chair is being fitted and telling her how to get a job where he has never worked with or seen anyone in a chair in a camp for disabled children where he has never worked (or seen)any children in wheelchairs. Super!

It became so clear to me at that point how fucked and unemployable I was. Because these people have NO IDEA the amount of accommodation is required. They think that if they go, “Hey, I know you have a disability and that is okay” it is enough accommodation. They don’t realize they need doors, washrooms, special headsets, computer programs, keypads, etc. And why would ANYONE in a country where no one is given any incentive (much less idea HOW to do it) hire someone like me?

I went to Badminton tonight because I am having problems with two fingers which are losing circulation and getting frostbite (and turning funny purple and white colours) and I needed to sweat to improve my circulation. Only no one would play with me. Even with Linda with me. I put my racquet in the queue. But it was obvious when I went onto the court and all the people went on the other side of the net to me that no one was going to play with me. So Linda came with me. Our opponents wouldn’t even speak to us. They had a “I can’t believe I queued up to waste my time with this” attitude. So we warmed up and played to 15 points without our opponents saying a SINGLE word to us. Though we talked to them.

My fingers turned very dark and weren’t getting oxygen, and then my nerve cluster went and my hand was useless but I tried using my left hand to play. That didn’t go well so with my right hand locked in a fist Linda jammed the racquet into my fist and they lobbed a "take it easy on her" birdie at me which I smoked back so hard it appeared to hit one of them in the head. I looked across and said, “My SHOULDER works just fine, so don’t take it easy” (we were down like 12-3).

After we lost I left and went to talk to the director and explained about my circulation and decided to put my racket in a queue separate from Linda to FORCE them to play with me. I ended up playing two more games, both with mostly females so those were a better games. Afterward I talked to J. who is tall and takes no nonsense and she was my double partner and has been going to the Y for a few years. I explained that this was the second time I had come to have the guys do a “cluster away” thing. She said to go down and tell the Y because these people need to be reminded that this is RECREATIONAL badminton. Though there is one guy who plays here who plays for Team Taiwan (so kinda competitive!). I said, which is true, “Every time I come, people watch me, and EVERY time I come I have to bring a solid game because otherwise no one will play with me.” I didn’t mention that I was sick of it and that I will play anyone and lose any amount if they will just play the damn game with me and not act like it is a 'waste of time'. The last game I went with J. and no one would join us. Now, I was having a beaten down day but J. was having none of it and went and pulled some people on to make doubles. It if wasn’t for people like J. and boxing coach Ian I think I would have quit trying. I’m not a machine, and though if you prick me actually I DON’T bleed, but I still feel and there is only so long I will continue against opposition.

I get tired of people not getting it on such a profound level. Fuck, get to know me before you either write me off or assume all over me. No, I’m actually NOT 'exactly like you except I happen to be sitting down'; even if I WAS an SCI. And the wheelchair does not dictate what the limits or the attitudes of the person in it so WHY so often does the chair dictate the attitudes and actions of the people TOWARD the person in it?

Tuesday, March 25, 2008

A "No Japan" day (Ha!) and Linda's Japan v. Beth's

I was “forced” to have a day off from Japanese planning today by Linda and the massive amounts of pain I woke up with. Of course, this didn’t stop two loads of laundry getting done as well as a bunch of emails and now I am starting on answering the questions for “The Ultimate Guide for Victoria” the alternative paper is putting out next week (answers by tomorrow). It seems they are doing profiles of various people in different aspects of the city which makes me wonder if I am now going to be a “tourist attraction” or not. Then they talked about sending over their photographer to my apartment (insert small scream). See, between medical equipment, wheelchairs, crap spread about (it is odd but being disabled AND doing housework doesn't go well together) I will be surprised they can find a place that doesn’t look like a Garage Sale in progress.

For today I really should try to come up with a blog that doesn’t involve a) Japan or b) Suicide but the alternative is some sort of assessment of the state of the world which even I find MORE depressing than talking about feeling suicidal. I did find from a news source the ratio of soldiers wounded in Iraq at 15:1 for wounded to dead. That means there are now about 60,000 potential newly disabled individuals (not counting Canadian and UK forces). That depressed me. What depressed me more was that the LAST story at the bottom of the “women’s section” in MSN was “Quarter of U.S. Women Suffer Domestic Violence” which talks about the estimated 2 million injured last year. That was far below; “Orgasmic births”, “Acupuncture and pregnancy” and the number 2 story: “10 diet mistakes and how to fix them!” See, this is why Linda doesn’t allow me a TV. I’m not even going to comment on those two stories because MSN, while it does have a labeled section for “pet health” doesn’t have a disability section. Which means trying to access and interpret US news is a quick trip to some sort of breakdown.

Instead I will do a quick analysis of the difference between Elizabeth’s trip to Japan and Linda’s trip to Japan. You would think that we were going to take the same trip but….SO wrong. For example, we are going to Miyajima, a sacred island across from Hiroshima. You would think we are going because the Itsukushima Shrine, first built in 593 and current buildings date from 1168 are a World Heritage Site. But you would be wrong, we are going because the Torii (gate) is listed as one of Japan’s “three most scenic sights.” See, Beth knows that if there is a photogenic site AND some history, she can likely entice Linda to go see the historic stuff because it promises great pictures. If you want a film on the Shrine and the island, there is a short one here. However in our planning over the weekend THIS is what actually happened:

Linda: “What is that warning on the Miyajima website?”

Beth (reading): “‘Deer may eat paper and cloth. Please be cautious of approaching deer.’ Wait there is a big warning, ‘JR PASSES WILL NOT BE REPRINTED OR REPLACED’”

Linda: “Oh cool! Deer!”

Beth: “WTF? How many deer have to EAT people’s rail passes before they put a warning on the front page.”

Linda: “Do they say where they deer are?”

Beth: “No, no mention of the deer. There is a street tour but there is a bunch of stairs. Oh here is a map of the island.”

Linda: “Monkeys!”

Beth (looking confused): “No. I think, old shrine, Noh playhouse, oldest wooden building in the world and the floating Torii. Heritage!”

Linda: “Click on that one there, it says ‘wild monkeys’” She reads, “It says they are on top of Mt. Misen”

Beth: “Yeah, and the pathway is washed out and not very wheelchair friendly.”

Linda: “But look at the map, there are a bunch of ropeways: gondolas!”

Beth: “They are WAY up there, up that hillside out of town, how am I going to get the wheelchair all the way to the ropeway station?”

Linda: “Hooray! We can go feed the Wild Monkeys!”
And that is how things are going, while we are GOING to World Heritage Sites, and UNESCO sites, what we are visiting while there is still up for debate. Because while reviewing the list of places we are visiting Linda announced that she is “Shrined Out!” Meaning, too many shrines in too short a time.

Here is another example: after finding that dressing as a Geisha in Kyoto requires to be standing for 90 minutes for the layers of the Kimono to be put on without creasing, it was obvious that was out for me (along with the plan of selling the pics of Geisha in Wheelchair as the way to make back all our trip money).

I said: “I sorry we can’t get dressed up as Geishas and have our pictures taken.”

Linda: “You mean YOU can’t get dressed up.”

Beth: “What? You are going to go and do it without ME?”

Linda: “I haven’t decided yet.”

And that is how everything is going. I mean, I guess, love Linda, love her obsession with taking monkey pictures. We are also going to the town of Kobe, the city where all the other nations were kept when trading with Japan to keep them from influencing the country. So there are a lot of old houses from different nations (nine to be exact) as well as a Chinatown. This is purely a walk, wheel and shoot pictures as we are going there straight from Nara (feeding deer AND if there is time, see at least one World Heritage Shrine – notice the priority). The real problem now is that we have to prioritize because a) I am only awake about 2/3rds the time other people are. B) I need to sleep twice a day, at strict intervals and c) combine those two and there isn’t a LOT of night time attractions (except in Tokyo). Which means that Linda will be going solo to see some things like the Ninja Temple in Kanazawa (since it is full of twisting stairs and trapdoors – not a lot of wheelchair ninja’s it turns out). But we want to visit the Samurai area together (picture). So we are trying to decide the TOP things we want to do in each city….before we both go insane.

Let me just say that I am VERY glad more places we are going to DON’T have wild monkeys.

Linda (yesterday): “Hey I read this stuff on the Ghibli Museum….it sounds really good, I think there will be some good pictures there.”

Beth: “Didn’t I print that off for you to read a month ago?”

Linda: “Yes….and now I’m reading it!”
Anyway, we will trade our reservations of only 200 reservations for foreign guests per day for tickets that are actually pieces of film (three frames) of Ghibli films (like Spirited Away, Porco Rosso, or Kiki’s Delivery Service). We keep the tickets as souvenirs. Getting in there was not as bad as the Kyoto English tour of which there are two a day, but not on Saturday or Sunday. We arrive at Kyoto on Saturday and leave on Monday. We got into the second tour on Monday because the first was full and each English tour group only allows…..8 people. And if you aren’t IN the tour, you can’t into the Palace grounds. Ouch!

I did just download a series of shops which do Geisha pics for Linda; since after the film Memoir of a Geisha it is the favorite thing of schoolgirls to come to the Gion district and get dressed up and wander around (about 20 different studios – you can even get the ride in the rickshaw). Apparently the way to tell a REAL Geisha is the speed they can move their legs atop their Geta (wooden shoes atop two tall vertical pieces of wood – the traditional Japanese high heels). But remember, I’m not thinking or working on Japan.

Monday, March 24, 2008

Thoughts of suicide: fighting to stay 'here'

For the past five days I have been battling with, being absorbed by or dealing with thoughts of suicide.

Part of it we can blame on Luna, since I tend to have a “dark” day or two immediately before. But also there has been a constant and unrelenting pressure of both the looming trip to Japan and the daily appointments. Last night it hit hard and I was overwhelmed by the feelings that this whole trip was just another example of me going off tilting at windmills, one which like all of them, was destined to end in failure. Failure is bad enough, but I had staked all my money, Linda’s money, our future earned money and my own health on it. After weeks and months on unrelenting research, I was stuck between feeling that I simply had not done ENOUGH, and that I had given into VAINITY, that this was not a trip I could reasonably make, not in my health.

There is no direct causal effect between the Japan Trip and the feelings of suicide, Japan is merely another stress, one where I have very little control once the trip starts and yet, once started I would have no desire for it to end. Each day, I work and research, info dumps so huge that my brain feels like it is going to explode, and when I can’t take anymore and stare into space, or take hours off then I chastise myself for not doing enough. Linda says this feeling is familiar to her too.

I want to go to Japan

I want to call it off. But it is too late.

There isn’t enough time to see all that I MUST see in Japan, yet, I’m scared to go at all.

I lay in bed last night and felt like beating on the wall, and not about Japan but about (wait for the randomness), organ transplant lists. I read about the waits on transplants lists and how people are being jerked around. It made me realize very clearly that I would NEVER be on any transplant lists, because I have too many systems failing to make it viable to put me on one, and because THERE IS NO TREATMENT. These things are kind of hamster wheels of the mind because if I WAS on some list I would spend all my time calculating the percentage chance I would get the organ before I died. But instead I am frustrated because any major surgery would almost certainly end with my having a stroke, assuming I could come back at all. I am frustrated because my condition, autonomic failure, has been known for 83 years and the amount of understanding, of treatment has not improved an iota (not even random guesses). Perhaps because I have hours daily of chest pain, even with the maximum pain killers is affecting my views. Pain is a very mind altering experience.

So it took me a long time until I started speaking today, until late afternoon. Because if there is no point in my living, then there certainly is no point in talking. Yet, while not speaking, I still spent the time transferring the places we wanted to go from the various books to our Kyoto Map.

I am afraid. I feel like a child left behind in the hills, the wind blowing and the vast, open, empty night spreading as far as can be felt. Not just my days, but my life is running out of my hands faster than I can cup them and no will power or tricks or brilliancy will stop this feeling of fear. And if I accept control of my life, which I MUST do, then I accept all of it; not just the trip planning or the nausea or the breathing problems but the weight loss and that I bruise sitting on the toilet now (fun fact of the day).

Today, I dreamed I was in Japan, and after the sword dance they wanted any women to take the sword. And I got out of the chair and received the sword with a bow. And then reviewed in my mind: choose the angle, attack her outer arm; you are far taller than her, move her arm out of position and go for a closing throat lunge. I guess that is why it hurts so much, because it is all still there, in my head, how to let her attacks as I retreat create the timing and opening; how to attack without exposing, ready for retreat and counterattack. That probably means nothing to you. I used to laugh inside when they would take away my competition epee’s as “weapons.” Because once trained to the level where you consistently hit an opening the size of a dime while avoiding the weapon of your opponent, all while they are either racing toward or away from you: having the right length of umbrella or cane, I or any highly trained epeeist could crush the larynx of half a dozen people in a few seconds if so minded. It is like when they planned to shoot the lit arrow over the Olympic torch to light it, and have it land in a space a few feet deep outside the stadium. It wasn’t the archer who made the successful trial who was selected, because ALL the archers they asked who attempted it succeeded. Doing something considered nearly impossible of humans is what modern competitive sports are about. The Number 2 in Canada eliminated me because I was trained to respond to epee moves that took a fraction of a second; her attack made three moves and took 3/16th of a second. All that knowledge and training is still inside me, it is just I will never use it.

I’d like to run. I’d like to be able to walk to an airport check-in desk with a backpack on my back. I’d like to know how to stabilize my heart, my breathing, to even understand the hours it takes of just being awake where the more I am awake the sicker I get. I want to fence for Canada, even if it was eventually in Master Class. I want to go back to when pain meant I had worked hard, instead of feeling fear and wondering how much sleep I will get tonight.

I want my mind back, and my body back and the ability to use both. I want to receive the rewards I worked for.

Isn’t that what suicide and fear is about: only able to see what was and scared of what is ahead. Well it is with me. Linda said I should think of squirrels. I told her there weren’t interested in me this month. She said that I was putting out the wrong pheromones. I replied, “Thank God. I was sort of hoping I was sending out pheromones for OTHER species” (significant look.)

Anyway, I realized that many of the clothes are packed, that whether I am terrified or not, whether I find a shop to get the “perfect” kimono, whether I get a cold as soon as I get there, whether I get no sleep and end up in a hospital….I am still going. And that when I get back, they will still be lined up to test me, and it will still be up to me to fight along with my GP, to get treatment and specialists to take action to deal with problems while there is time.

It is just, I guess that sometimes I want to live in the past, or grieve, or hide, or give up. But I don’t. It is just it takes energy, emotional pain and time to fight it. I’m not going to pretend that I don’t feel suicidal or have a case of the pity’s or the “not fairs”, or just the shaking unknown terror, because I do. But that isn’t who I am. And I can’t face something by pretending it doesn’t exist.

Okay, I’m scared, and maybe, right now, I want to die. But this too will pass.

Sunday, March 23, 2008

Beth as 'charity duty', I plot mischief and wear a mini-skirt

I have recently been told that person/s visiting me have been commended by Christians on how “kind it is of them to go see that poor girl.” Like seeing me is part of the freaky Scavenger Hunt some Christians seem to think life is.

So I thought I would sort of clear the air and let you know that I have no interest in fools, tedium or being read bible scriptures (unless you let me pick the scriptures…heh heh!). Being disabled has placed severe limitations on how I can see people; that is true. However, if you don’t think the ride is going to be worth the admission, then don’t enter the Elizabeth McClung theme park. You can a) Stay on the side of the screen and read, b) You can enter a little closer to the brain of Elizabeth by commenting, c) we can start emailing (which often has long interruptions because one or both of us have health problems) or d) Total commitment: a face to face meeting!

There are at least five people I can think of in less than 30 seconds that I WANT to meet since I started blogging about being/becoming disabled (probably 10 or more if you give me a minute); and once I secure my private jet/train, I am on the way. Seriously, I am TRYING to figure out how to, a) pay back Japan and then b) Go a couple thousand miles to see them. Do I want to see them because God is going to give me brownie points? No. I want to see them because they are interesting people, people who have a sense of humor (often sick, like mine), who have “passed the veil”, who know what pain and limitations are and know that isn’t WHO they are. I want to see them because I want to be with someone who “gets” me and someone I can have a good time with, even if it is us sitting in our wheelchairs in the same room talking.

I have ex-care workers who I can call up and we drink wine and talk for hours. They don’t come because I pay them (not anymore) but because in the words of one, “You can talk to her about anything.” Or as another says, “IF you can get a word in!”

Please disabuse any notion that you are polishing up a divine resume coming to see me. I can deal with being me, if you can’t, well, I don’t know – why not pray a lot, I tried that for years in order to stop being a lesbian and ended up with a lesbian partner, maybe you will be so lucky.
Okay, now less on you and more on ME: I got up today to a hells brew of weather: wind, rain, flying objects, and probably hail at some point. However, what is going through MY mind? “I have WAXED legs….I am SO going to wear a skirt!” Especially as my Japan wheelchair will have my knees in the air which makes skirt wearing a bit more….um, well, I should put advertisements on my bikini underwear. So I showered with help and got dressed in a new (meaning unpacked from the summer) corset with skulls all over it, and wore my tripp skirt, with leggings and skull socks from Laura (matching the corset), and my skelekitty earrings and headband. My hair is two washes into the “I wanna be pink” attempt. I am of course, plotting something, that is my “Oh, I’m so clever and no will notice I am planning mischief” face.
What am I planning? I am going to take my skirt to Japan. That was the new plan ever since my father saw me today and said, “That’s QUITE a short skirt isn’t it!” It is amazing how those words started an immediate feeling a deep love toward my skirt to grow in my heart. And his follow up line of “You’re not taking THAT to Japan?!” Made me think, “If I just ‘slip it in’ the packing, then Linda will never notice until it is too late.” And lots of pictures of me in it, of course, just to post to him with a, “Having a GREAT time!” message.

I am still losing weight, so actually, I will need to pin it as I am now down to a size Large… JUNIOR MISS. I would sigh, but since junior miss and hot topic have all the best styles of being a rebellious punk and it still obviously STILL works on fathers (even ones who should leave clothing criticizing to the PARTNER of their daughter). I always wanted to know who the women over six foot women were who were buying the size 7 or 9 jeans from Tall Girl? I may soon find out. My torso has lost weight too, so I fill up the space in the corset up top with extra padding and a strapless bra (love the gel packs). I amuse myself. Besides, since I had to wheel two blocks in a huge downpour in my skirt and corset, I know exactly how impractical what I am wearing is in relation to the weather. That’s why I was going “hee hee!” for the entire two blocks. Because, when you can’t afford to live dangerously anymore, well, at least try to dress dangerously once a week!

Here I am, in the total of 45 seconds of sunshine we had today, where it still misting slightly and yeah, this is who I am. Sure, this is part of my “best three hours of the week,” but if you don’t come, if you don’t visit you don’t get those good hours, and even my bad hours are pretty full of sick, sick jokes. I hope you are having a good day and I am looking forward to getting these endless packing lists, buying lists, to contact lists, and other lists finished and get over to where the postcards are (so I can buy them and send them to y’all!). Because, common sense says this is NOT a trip I should be taking. Luckily I have a brain of a supercomputer, the dress sense and maturity of a teenager, the body of a supermodel, (that’s what super-thin means, right, supermodel? Or just model?) and medical equipment in excess of most ambulances.

And, finally, visiting someone with a disability is an opportunity you give to yourself; as I think the entire nation of Japan is about to find out.

Saturday, March 22, 2008

Jesus the disabled: The Easter sermon you won’t be hearing

For the Christian world, this is Easter Sunday, when Jesus (if you want to look at it technically) rose from the dead as Zombie Leader to raise his zombie army, people who, if they ate human flesh (specifically his!), were promised to one day rise from the dead too (I think many churches might call these other names like: The Eucharist, Resurrection, etc). And while I did ask at the video store why they weren’t doing a display for Zombie Sunday, I did not write this post to intentionally offend the 1 billion Christians (who often display a lack of humor regarding exact wording).

No, I wrote this post to point out this, that this holiday, or holy days for the Christians celebrate the act which gave humanity hope: That God in the end, embraced any limitation to reconcile with a rather tetchy and rebellious species…humans. What they don’t emphasis or embrace is that this greatest of all divine accomplishments was done by a person with a disability. Yes, Jesus was disabled, in all aspects of that word.

This is not to say that Jesus wasn’t able bodied before, but then so was I. And it is not to say that Jesus was not made disabled by other humans; which I am sure the tens of thousands of soldiers coming home also can relate to. What interested me, and kept me thinking was that when the three went out that morning to go to Golgotha, only one was so physically disabled so as to REQUIRE assistance from Simon a Cyrenian (Luke 23:26 if it interests you). Now I grew up, well, a type of Christian, I still am, a Christian (a different type), and I knew the “Passion” (ick!) or Crucifixion story backwards and forwards. But until I became myself, DISabled: literally unable to do things without assistance, did I ask myself: Why? Why did Jesus, between standing solemn before the Roman representative and forgiving the people who were crucifying him WHILE they were doing it, need help? I mean, this was supposed to be Jesus, who was God-on-earth’s big moment right? So why, does a person who says he could call a host of angels, NEED help. In fact, need help so badly that if Simon wasn’t there, there would be no big crucifixion scene: because Jesus was disabled.

Now there are a lot of religions but I have to wonder how many of them have a PWD doing the “big act” that the corporate religion is based around? Because that is what Jesus was, a person with disabilities, limitations, needing able-bodied help to do the job, which according to Christians, was saving humanity. A lot happening because of Simon; because an able bodied person and a person with a disability worked together, to save humanity? Now we can say Simon carrying the cross was unintentional, except aren’t Christians the ones who always go on that EVERYTHING Jesus did was intentional, that as GOD, Jesus reeked of intentional. Then that means Jesus WANTED to be, for however short a time, a person with a disability (in fact, if you look at John 20:14-16, Jesus ROSE as a person of disability too – since those are the people given the jobs to tend the graves in that time period – and the reason Mary did not recognize him).

See, that’s the part I keep going over in my head. That Jesus and God had made this agreement on how things would go, and at some point, the Divine decision was that Jesus would not only need God, but would need the assistance of other humans too. That Jesus would, in his, I think we call it “final stages” require a caregiver named Simon. That Jesus knew what it meant to remember what it was like to be able bodied and no longer be that, and to know that wasn’t what mattered. See, didn’t matter. The world was/is saved, by a Jesus the disabled, and while no one is going to go up there on Easter Sunday and preach that sermon, because we live in a world where people with disabilities aren’t seen as truly equal. Of course, Jesus was also a criminal (ex-con) and a labeled traitor by his own population, which also isn’t going to be preached. Because it turns out that 2000 odd years later people who are picked up police are still “probably guilty of something” and “there is free speech and then being a traitor to your people”. And (insert a snorting laugh here), disabled people don’t go around saving the world; they should “consider themselves fortunate” to be in a society which gives them access. Which reminds me, I wonder, how many of those churches tomorrow around the world will have full access, you know, the kind of access JESUS on the way to Calvary would have needed?

I never understood why over the years the church leaders always skipped over parts of the final time of the crucifixion. It was always the long speeches instead of “I thirst!” and waiting while someone brought a drink. Or “Why, why have your forsaken me?” Because these are statements that someone who is dependent, limited, a person of disability makes. Does the idea of Jesus accepting being a PWD and it making not a bit of difference, seem offensive?

Just remember Sunday, if you are an Christian, or even an Easter Christian that it was Jesus the disabled, Jesus who needed caregiving, Jesus who needed Simon to carry the cross upon which he was going to bridge the gap between the human and the divine. The state of the body and who Jesus was did not change for Jesus, did not change for God, and yet, that is not the sermon people will be hearing tomorrow: That Jesus and caregiver (Simon, the most famous caregiver in history!) were enough to get what needed to be done. And so God, in this Christian act of supreme divinity, needed a hand. And did not consider it to lessen the act.

See, that is FAR more radical than the zombies, isn’t it? And sadly, it is all true. The one group which SHOULD be speaking on Easter Sunday, who should be up in front to explain the emotions, the struggles internally, the feeling of dependency, of learning to accept assistance in common needs, of learning to leave the able bodied self behind, are PWD’s. Jesus was disabled. Why do they forget that?

Friday, March 21, 2008

Waxing, the perfect mons, blue extremities versus moisturizer

This morning we were women with a mission: hair removal. See, in Beppu, Japan we are going to a “traditional Japanese Bathhouse” where there are hot springs. In a bathhouse the women go on one side and get naked and then wash outside the “communal water” and rinse before going in. And, according to reports, if you are different (Like you having DD breasts *cough*Linda*cough*) then you may have older women coming over and grabbing or holding them. Seriously. A friend told us that even in department stores women would ask to hold her breasts. See, in Japan, everything is two sizes up, so my A/B’s are now C/D’s (Woo Hoo! I knew if I prayed long enough the day would come!). She also said don’t buy bras there as they are SO padded they made her C’s into like E’s. But then, she was also the one who told us that we HAD to go to a love hotel (Maybe we should have asked a few more details on what her job WAS over there exactly). So, major public nudity means going for a wax.

To avoid the problem of last time (the wax bonding to me and being unable to be scraped off with a trowel), Linda brought a heater to heat up my lower legs. I went first with my months of hair because my care workers won’t shave my legs (nor will Linda, though it turned out as she took off her jeans she had been SHAVING HERSELF – oooooh!). All went fine, and I was glad for the diminished sensation (limited sensation, no sensation?) below the knee, it turns that the closer we get to the…ahem, bikini area, the more I could still feel. Which is good, sex wise, but bad waxing wise. It turned out that wearing my thong bikini leopard print Victoria Secret panties was a BAD idea because the beautician was like, “Oh great, we can go right in!” Right in? Oh yeah, nothing like having hot wax poured a couple millimeters from the labia. Well, nothing until it is RIPPED out in one swift motion. Then she started working down toward the clit and I was thinking, “Oh God, why, WHY did I not take the time for a trim?” Actually thinking that and saying, “WoW!” really slowly which meant, “OMG! If you do that again I am either going to be attached to the ceiling or passed out.” And yes, I was paying for this with money, not some charity event.

Anyway, I get home and go to the bathroom and start calling, “Linda, Linda, come here!” And she opened the door and I was leaning back pointing down going, “Look, I have the little triangle of the Mons, just like those magazines! We should take pictures!” Apparently, Linda camera whore that she may be has limits and while, yes, I had been waxed into the classic nudie mons pubic hair cheesecake triangle, she was NOT going to take a picture of it. Well, fine, I sure hope the people in Japan appreciate the effort I went to for them.

Back at the salon (the same one who told me my hair couldn’t hold pink due to thyroid), the beautician let me know that the four inches or so around my ankles had no hair at all, it had all died off. We surmised that was because Reynaud’s means it isn’t getting enough circulation at the follicle level and the hairs died by.....asphyxiation. I said, “Why is it that every time we come HERE, I find more bits of me that aren’t working?”

Linda said, “Because your doctor doesn’t wax your legs.”

Me: “Good point.”

So after that came the threading in which two threads rip out your eyebrows using friction and high tension. It sounds like a small buzz saw and feels like someone taking an ice pick to your forehead. But it is over quickly and now I was a little shaky but waxed, threaded, hair cut and coloured: ergo ready to meet the wide world. But first I needed to go home and rest because I notice there are several triggers for my “attacks”: Heat, Fatigue, Lack of Sleep and/or Pain, temperature changes, internal changes and talking.

The last one is my new irony: talk so much I risk brain damage by becoming cyanotic (why can’t medical people use “blue” it is a perfectly good word, not, “your fingers are cyanotic” but “your fingers are blue!”). Anyway, by 2:00 pm something funky was happening inside me because my fingers were very, And I did a face plant so I went to bed (Interpret: Linda forced me to bed to try and sleep). Almost immediately my heart did something new, which made under my left armpit and into the heart hurt like someone took a broad dagger, stabbed me, and then a second later twisted it (thus producing two screams). I couldn’t move and Linda had to roll me (I begged her to promise me that IT wouldn't happen again, and she said, "I wish I could sweetie!" - Linda, you got to know when to lie!) and after pain pills I slept, only to wake up choking on my own saliva (called aspirating). I went back to sleep and I think I was aspirating because a) my throat felt raw upon waking and b) My dream was about a clogged toilet and pulling crap like shirts and pants out of it, only I was pulling them out of MY MOUTH. And no matter how much stuff I pulled out, I still couldn’t breath, or I could barely breath. Or you could do some interpretation between that dream and how much I write a day!

I slept about four hours and then got up and got right back on the “Going to Japan” chore list which today was, “Get all the stuff I sold this week ready for posting” along with collecting addresses and the other 1,000 things to do before a trip (1 week: I’m not ready to go yet!). Linda did most of the packages, I just helped with the labels and stuff like that. I also went a little crazy trying to find the pocket Japan dictionary I found three weeks ago and was SURE I put up atop a bookcase. It has decided to hide until the day we arrive BACK from Japan at which time it will be sitting in plain sight. If I don’t find it by Wednesday, I am getting a new one from the bookstore (arg!).

So, no. No picture of a classic sculpted by waxing mons to put up on the blog (Boo! Linda Boo!). Why would I want to do that, many, many sane people would ask? I dunno, I guess the same reason I put up a lot of stuff: a) I’ve never had someone wax it that shape before and b) it looks like a celebrity, or famous women (I’m sure Betty Paige had one that was perfectly triangular!) and c) geometric figures? Hey, sometimes I am not so sure why I do things; they seem a good idea at the time.

Okay, here is your Linda quote for the day which shows a lot about Linda: She grabs my hands and says, “Your hands are completely blue…..and really need some moisturizer.” (she has this whole obsession with moisturizer and hands and feet) – same with at the salon, “You have no blood flow to your ankles....we should use moisturizer.”

I’m not saying she’s wrong, I’m just saying my mind throws a few “AHHH!” or “Oh no!” or “That’s bad!” between “Blue fingers” and then down to “need to be moisturized.” I guess we each have our own priorities.

Thursday, March 20, 2008

Beth acts immature, acts 17 and gets BUSTED!

Today is “Beth is in Trouble!” day.

All because I did one little thing last night I didn’t want Linda to know about and got BUSTED today. Well, plus I am typing this one handed because a) I have been too busy to get Dragon 9 to a useful state instead of repeatedly yelling, “scratch that” due to time lag before seeing my entire document disappear. And b) because I JAMMED my finger bad at boxing showing a move to someone. Isn’t that the way of it, you try to be the coach and you end up the idiot.

First, what did I do last night? Well, I had been looking on Hot Topic at this lush gothic white dress with tulle and a train which Linda says, “Will make someone a great Grad dress.” And I think, will me a rockin’ wheelchair goth dress (particularly if I splash the front with blood).

It was from the super-expensive Lip Service and was half price (or half price of half price). And while I was lying in bed during my afternoon nap I remembered that Linda LEFT OUT her credit card by the computer in order that I could feel “secure” if I needed to get something "essential" (like medial supplies). She thinks this means I WON’T buy things. So, about 12:30 am, I start thinking about that dress. And thinking about how my Manga ended up selling for more than $300 over my highest expectations and yes, it is all for Japan BUT: what is one little $47 dress on super sale going to matter? I, of course, ignored Linda earlier comments (and others comments) that such a dress would be sucked into my wheels in a flash, because this was about the gothic fantasy, of clubbing and somehow, someway, showing up at Starbucks in THAT dress. So I ordered it.

Except I didn’t send it to our address in Canada, I sent it to Cheryl (Free shipping within the USA) who visits us and who I joking sent an email with a link to the dress when I first saw it saying that having THAT dress show up at her Ranger Station in the Olympic Park in HER name would really give people new images of her (she dresses kinda…….practical). She said, “Hey, let them have new images of me, but that dress will get sucked into your wheels and you are on planet fantasy” (something like that). Which to me was translated into “Yeah, send it to me, I'll hold it for you…blah, blah, blah, blah.”

But then, once the dress was in the cart, there was this one LITTLE hoodie which had it’s own arm warmers and since I was ALREADY buying the dress I NEEDED to get this quite affordable hoodie (with free arm warmers) in order to get the free shipping. Actually I got another hoodie and some more things but when I saw the total I deleted a lot because, a) I was going to have to tell Linda at SOME point, and b) the extra money WAS for Japan after all, I was just taking a little. And so I put through the order, which should show up at Cheryl’s office in a few days (Now this WILL change your image, hee hee) if you want to see Cheryl look back a few posts to see Cheryl, M. and I in a row under the cherry blossoms.

Only, I wake up this morning to an email saying, “Hi, this is Hot Topic, we need for the card holder to call us to verify this order that was made last night.”

AHHHH! See, I hadn’t gotten to the part of telling Linda I was buying the dress she said would be “useless,” along with “are you getting married” and a few other choice sarky lines (she didn’t see the potential a splash of blood could do to the front of that dress). I hadn't actually gotten around the PLAN of how I was going to tell her.

But better tell her than let her find out by email so I had to call her, and tell her what happened that I was forwarding the email. I was cringing while I was telling her but she just said, “okay.” I guess you get used to me doing stupid but not TOO expensive stupid things late at night (if you leave your credit card out to make me feel better – and it DID, right until the email came the next morning). On the plus side, this stupid night thing didn't end me at the police station (like OTHER nights).

And yes, I know this sounds like I am 17. But, now, since she was going to call them, I kind of needed to mention the hoodie I added to the cart AND that I MIGHT have gotten a lace long sleeve shrug too. But there was a VERY good reason for that! The shrugs I got LAST year to go with my corsets are Lip Service but heavy cotton, and so for when we go to clubs to dance (which we havn't in 08), in the wheelchair, I am MORE heat intolerant now and will need something sheer. See, see, it was VERY logical buying.
Thankfully, Linda actually thought the shrug was a good idea since we keep saying “We should go out to a club and do some dancing” but we never do (because we are always planning and researching for Japan). So now we have another reason to go clubbing when we get back. That’s how I sold it anyway. Oh God, if only they had taken paypal, I never would have been found out.....till they arrived at Cheryl’s desk. Which reminds me, I REALLY need to send Cheryl an email and soon.

I am sure there is a lesson in there for me, but all I can keep thinking is: I got my dress! I got a hoodie! Woo hoo! So probably need to be grounded.

As for the rest of the day, let’s say that, my shower and dressing person came for only half the time. But she still managed to give me a near hospital trip when I transferred off the toilet after she left and the toilet was full of an oily white liquid that I couldn’t see though and I am thinking, “OMG! I think one of my organs ruptured, maybe a kidney?” And then I remembered I asked her to dump the ice cream from the dying fridge in the toilet. She obviously had not flushed it. I obviously had not looked down when I transferred onto the toilet and so thought I was peeing melted vanilla swirl. Still, a panicked minute.

As for boxing, after jamming my finger, I tried to keep going with my right arm by doing elbow strikes and managed to hit MYSELF in the mouth and have a swollen lip. I have also found that while I may not have micro function or nerve function in two of the fingers in that hand, I have pain sensation in THAT finger. Which means I can’t use the hand (swollen finger, very painful). And I discovered that I had compensated for the loss of micro function and limited macro function by doing everything with two hands, sort of combining the best of both hands. Only I didn’t know this till I tried to come home and get undressed much less pick up a drink or do any other tasks. So, since I can’t wheel with one hand (well, not in a MANUAL wheelchair), I will be housebound tomorrow. That is until Linda told me I have an eyebrow threading and leg waxing appointment in the morning. I do? Oh God, how am I going to do a car transfer with one arm and hand? Guess I will find out tomorrow.

I don’t really expect any sympathy as both the late night buying AND the boxing accidents are things I got into myself, so I will figure out how to get out of them too (sell some of my DVD sets?). I just thought it might amuse you to realize that I seem to have a lot of rebellious (And moronic) teen left in me. As Linda came to kiss me good night, I said, “I’m doing the blog.”

“And how are you going to get your contacts out?” she whispered in my ear.

I said louder, “I’m doing my blog!” And she went off laughing. See the level of compassion around here.

Wednesday, March 19, 2008

Our fridge launches, Fran is second, and going to Japan

Today was one of those days in which many things must have happened but I am darned if I can remember what they were. Most of my thoughts have been intruding reminders about the trip to Japan, which would be more useful if I wasn’t housebound. Linda is off on an all day conference tomorrow and is probably glad to be away from the phone calls from me: “Did you remember to pick up xxxxxx?”

The news of yesterday was that our fridge started making noises that I have heard watching NASA launches as “fire ignition booster rocket” My GOD! Can that thing make noise. This is where actually having a Butch in the family might be useful, as we turned it off and then after a while of various prayers and offerings turned it back on. It seemed to hum but we noticed that it wasn’t freezing anymore. This morning at 5:40 it went back into “Launch mode.” So Linda shut it off for a few hours.

She came home because FRAN, the manager refuses to talk to me, or come up to our apartment anymore (oh, what a horrid tragedy, how will I survive?). Linda filled out a “service request form” and then Fran, refusing to SEE Linda, talked with her on the phone and got a repairman to come TODAY because the other alternative was him coming tomorrow when I was home. Fran said she wouldn’t send in the repairman if I was home alone (I don’t actually EAT people, that’s just what they say on on-line forums). Anyway, the repair guy said that Fran was a piece of work but she wasn’t the worst manager in the city (second worst, ya gotta try harder Fran!). Apparently, the worst was a woman same age who was SURE a tenant was smoking on their balcony and she ran full out, fell down and split her head and broke her arm. Did she stop? No, with blood pouring from her head and her broken arm, staggered up and kept going to break down the door and get the PROOF of the person smoking on the balcony of a non-smoking building. He met her later with the arm in cast and a bandaged head. Okay, I admit it, that beats far.

Anyway, our fan is frozen (no irony here) and our fridge, “Not worth repairing” and while Linda wanted to talk to Fran about it Fran would only talk to the repair guy. So anyway, it seems we are getting a new fridge sometime (expect random phone calls?), and that either Fran has been told to stay away from me or honestly believes I suck the blood of children, or both.

I want to make a final appeal to people if you haven’t send me an email to to do so and you get a nice postcard from Japan (FREE!), as we are doing the stickers this weekend. And here to let you know the first part of the trip details (please don’t come over and rob me!):

April 1: Arrive in Tokyo, take the train directly to Nikko
April 2: Get up to watch the shrine maidens due the sword dance, likely have Linda ‘think’ she is recording it but has just pushed the ‘check light’ button instead while all I see are a bunch of Japanese asses and backs blocking me from the stage viewing. Break down in tears. Then catch the Bullet Train number 20 to Kakunandate. See the landscape and mountains of northern Honshu from the train. Arrive in time for pictures of cherry blossoms at sunset (anticipate rain and more crying).
April 3: See the cherry blossoms and the Samurai houses and then take the Bullet Train back down to Tokyo where we stay for two days. Linda and maybe I are taking a night tour of Tokyo on the river.
April 4: I HAVE the tickets to the Ghibli Museum where I will probably die from anime excitement. Only 300 tickets a day are available. In the afternoon/evening we are going to B-lily, the Yaoi theme café, woo hoo!
April 5: Shopping, culture, who knows? We are still deciding this week, but I am likely to go to Otome Row (Maiden’s Row) where women buy Yaoi and Yuri manga, figurines and all things geek. We also want to do a big department store and see if we can get the gift buying for relatives done AND have THEM do the shipping.

Well, that’s all for tonight. We still have a LOT of planning to do, particularly in the shopping department. As Tokyo is our shopping and “low” tourism site while the rest of the trip (except Beppu) is all about “high” culture. We both have computer flash sticks and Linda said she will post what I have written if I am too tired/ill to leave the room in evening or if there is only a computer in the lobby to access. So we plan to post for the whole trip if we can.

The reason I put all the crying in is because I get these very BLUE times when I go on journeys and then all the anticipation (much like a child) is ruined by rain or is closed or I am too tired or ill and I get GLUM. Like, stick out my lower lip and cry glum. This is usually when Linda finds me and there is a slightly incoherent ramble which will likely be something about how “This was SUPPOSED to be great but I didn’t RESEARCH enough and things are going wrong and now you are thousands of dollars in debt and everyone is unhappy and I don’t know what to do and I am going to go now and solve it all by wheeling into the SEA!” Drama Queen much?

The problem is that things DO go wrong and when you are tired and hauling ALL your stuff every day, things like a missed nap and no food for a while can make things which aren’t that important seem REALLY important. And then I will convince myself that because I am not feeling happy, that I have ruined the trip. So, we know that and we will put me to bed with drugs and then about two hours of TLC and some beer and I’m usually, “well, maybe the WHOLE trip isn’t ruined.” Because, let’s face it, we have planned all these things we want to do and things NEVER go exactly as you plan and instead you are on a 6 hour train trip next to a family that farts continuously. Or who get drunk and start belching while I am trying to soaking in “the amazing and ancient heritage” of Japan which I paid and saved and worked months to get over here. And my health will fail. And I will burst into tears at least once. This is what trips are like. But then I will also be happy, overwhelmingly happy. And I will watch Linda going over the pictures at night like a person counting their gold and I will know that it was right to take this trip. And we will ship painted umbrellas to nieces and buy kimonos (summer ones) and traditional sandals, and maybe some original pottery and ship it all home. We will check into a LOVE HOTEL in Tokyo for an hour JUST to take pictures (how tragic is that a statement about our sex life!). We will wheel through the thousands gates of Kyoto and watch the geisha’s on their Geta clacking to work in the twilight.
I think the most important part of every trip is that the up and down, the wonderful and the horrid: Linda and I experience it together. And later on some program about world heritage sites I say, “Hey, that’s where you got food poisoning.” Or she says, “That’s were you had a tantrum and around the corner I got you a beer and calmed you down” (Linda is a big believer that a slightly tipsy Beth is an easily controlled Beth).

And I hope this time, we can share it all with you too.

Getting pink hair, cherry blossoms, EMT's and squirrels

I have a great need to say something positive on another day which wasn’t very positive. Actually this post was going to be about rape, and how the new home care agency is sending men to female clients (for the first time EVER) for showering and intimate changing UNLESS you specifically have “been raped” added to your file for all workers and schedules and managers to see. And maybe I will talk about that another day but let’s talk about squirrels instead. Actually, though this weekend I fed a few squirrels that seemed to recognize me, every time I would get a few squirrels together, one would start chasing another, and then they would end up going up a tree together. There was something going on as for once, some squirrels were finding OTHER squirrels MORE interesting than peanuts. Sheesh, what is the world coming too? (Linda says it is called “Spring”).
Cheryl was visiting with a friend M. from Port Angeles. Both of them are Rangers and both are EMT’s (and M. is actually registered to run into burning buildings. I don’t know exactly HOW you get on a list to register to run into burning buildings as I have often been STOPPED, but if you know, please let me know, because that sounds like a kick-ass certification to get). They helped me feed the squirrels (see first pic) and then we wandered down to the IMAX film I talked about the other day. When the usher came to get me, I had this whole group traipsing after me, so I was: “This is my Caregiver” (Linda), “This is my heat exhaustion EMT” (Cheryl), “And this is my generic Trauma EMT.” (M.) On reflection, I am quite surprised we were allowed in at all, normally having THREE medical people for one wheelie is BIT much. Afterward, in the spirit of heading to Japan, Linda got a picture of us after we had been saying rude and likely sexual things in front of the Cherry Trees. I am not certain if this is how one is supposed to view the cherry blossoms in Japan but it seemed pretty good for us. (click on the pic to blow up and see all our leers)

Today I went to get my hair cut and dyed, which was an exercise is humiliation and frustration. First because, all I ask is that my hair be pink, as in Anime and Manga girl pink. I am after all going to Japan and after MUCH viewing of Anime, I have determined that I need pink hair to blend in with the Japanese population (either Pink or blue hair). Also, I wanted to take a sword and look like Utena (a lesbian anime character who fenced people and had pink hair). Well, I packed the camera to record the whole process including making my head a giant pink cone. But I left the backpack (with the camera inside) at home. So sucks for me. Anyway, here are some highlights:

Me: “Now don’t use any discouraging words but since my thyroid is dying, can you notice any thinning?”

Stylist: “YES!”


Stylist: “Don’t ask me why, but I am NOT doing layers at this particular level at the back (lower side of my head), just trust me on my reasons.”

Me: “What does that mean?”

Linda goes and looks, “It means, do you want a bald spot or not?”

Me: “NOT!”

Linda: “Then listen to the stylist.”


Me: “I thought you told me I wasn’t getting thinner.”

Linda: “I told your hair looked just as full… the last time, that doesn’t count over six months.”
Me: “What? That makes no sense. So it WAS getting thinner?”

Linda: “I think you are overheating, you should have a drink.”


Stylist: “OMG! I have turned your scalp pink!”

Me: “Good!”

Stylist: “No, I mean, really, really pink!”

Me: “Good!” Sees self in mirror, “Okay…..yeah, that is really pink!

LATER – as stylist is blow drying hair

Stylist (to Linda): “You need to come here.”

Linda goes over and they look at my hair

Stylist: “It didn’t take, some of it took but some of it didn’t take at all. I’ve never had this happen, it must be the thyroid.” (talking about the hair changing colour)

Me: “What, put something else on! Make it pink!”

Stylist: “I put something else on and you have NO hair.”

Me: “And if we bleach it?”

Stylist shakes her head (I bleach hair left).

Me: “So I have……red hair”

Stylist: “Well, there is red and brown and copper all mixed together but no: there is no pink but a deep red.”

Me (not quite in tears): “Suck!”

So, I am NOT going to Japan with Pink hair but reddish hair, a darker red than before and hopefully it says, “I am punk crazy and my dangerous sex appeal with corsets overcomes your odd prejudice about wheelchairs” instead of “I am a mature confident woman.” Because quite honestly, that last statement is the LAST thing I want to project. Here is a pic of me and the hair (the hollow look is partly due to the hair and partly due to not getting enough sleep because…I had a new night care worker)
So, yeah, had this new night care giver, which is always a bit of a stress. On the plus side she didn’t freak when I couldn’t speak. On the down side she doesn’t know how to use oxygen tanks (just like the last one) and she sleeps….a lot. I am starting to realize that most night workers come and expect me (and them) to be asleep by 10:30 pm (the seniors for clients). Only I go to sleep at 1:30 a.m. I figure if the night person is getting the same amount to just sit and read and make sure I breathe until I go to sleep as the people who come and do my laundry and make meals, then they should…stay awake. I noticed that my night worker had stopped coming to check on me, and eventually, wanting to go to sleep an hour later, I went looking for her with my wheelchair. I found her in my bedroom with the lights turned off fast asleep. So, I waited while she woke up and talked her through the various “going to sleep” tasks….several times. At one point I waved my hand in front of her face and called “Hello” because I think she had gone back to sleep (she was supposed to shut the bathroom door and instead stood in it swaying).

Because I talk so much about my care, many could think that I get a lot of care but for daily care, I average about 7.5 hours a week. I am allotted the maximum of 120 hours a month. But because I have problems getting into bed and GOING to bed (Bed is where the PAIN is), that puts a strain on Linda to help me and do her job and the overtime her job requires. So after Linda burned out I changed my hours so about 75% of my home care is in making sure that Linda gets at least two good night’s sleep between Monday and Friday (three if there are extra hours). Any booking of an “overnight” is 10 hours, so at 4.5 weeks a month that is 80-90 hours with 7.5 hours a week during the day making up the other 30. It is just: with the new workers coming (and me having to train them), it gets a bit tiresome as THEY and Linda often get more sleep than I do. But once I find some regulars hopefully things will go back to the efficiency of before. But, to get the extra hours for night care, I cancelled some evening work and added assisted showering to meal prep, and cancelled one day entirely so not everything gets done. This is why, as it has been since March 1 when Beacon took over, every time I am told (daily) that my care is changed or reduced or not coming, that means no shower, or meal as well as a load of dishes or clothes that just…wait. I am not complaining (well, except when they don’t show up or are not competent), what we have works. It is just I think people think I get a LOT of care during the day or evening and that isn’t the case. I have a volunteer which goes to boxing with me (10 pages of liability wavers: no, not joking), and a worker to dress me. But otherwise, I am in the bed or in the wheelchair or in my computer chair. Which is where you see me with my NEW pink scalp and fairly reddish hair.

Um, that’s it. I know a lot of people don’t have care and I am glad for mine so I can use it to make sure Linda doesn’t burn out taking care of me. I am fortunate and acknowledge that (but also can lead to some times where I am literally stuck due to a cancellation, and Linda has to come home from work to give me a shower – which is less than self affirming). The good news is, I am going to have a slightly pink shaded pillow tomorrow! Hope your time in the hair salon goes happier than mine (as I sunk my head to the Stylists table and said, “After everything that has stopped working or is messed up in my body, don’t you realize that is WHY I want pink hair, and now you are saying MY HAIR is messed up too.”)

Oh well, we move on, eh?