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.


cheryl g said...

Obviously no one at Monday Magazine can take the time to read your blog or they wouldn't be so clueless.

I find the caller from the Vancouver hospital even more disturbing. She seems a taco shy of the combination platter if you know what I mean.

Stephanie said...

Your Abott & Costello appointment routine was similar to one I went through last month while trying to make an appointment a clinic in Nanaimo. The receptionist suggested 10:30 on Tuesday. I told her I was coming by Greyhound from Victoria and couldn't get to their office before 11:00. OK, she said, then how about Thursday at 9:00? Again I said I can't get there before 11:00. Well then, how about the following Wednesday at 10:00? No, the bus schedule is the same every day and I can't get there before 11:00.

At that point she gave up and suggested I take some time to look over my calendar to figure out when I was available and she would call back tomorrow. I tried to explain to her that I could make on any day they wanted, as long as the appointment time wasn't before 11!

Do they even listen to the people they are talking to?

Then there was the receptionist a couple of years ago who called and left a message on my answering machine a few days after I had just left town for three weeks. The message said that the doctor was going on vacation so they were rescheduling my appointment for two weeks earlier, on a date before I was returning home. That was followed by a later second message admonishing me for missing an appointment without giving them 24 hours notice.

The Goldfish said...

I always find conversations like that rather comforting; someone, who actually has a job, is even less on the ball than I am. Comforting later on, perhaps. Infuriating at the time.

yanub said...

You probably didn't realize this, but idiots and jerks are like Santa Claus. They know when you are sleeping, they know when you're awake, they know when you have other things that you absolutely must attend to. And they use that knowledge to call you at the most inopportune times and make impossible demands.

Ignore them. Do not make any attempt to meet with the photographer tomorrow. They can use your pictures you sent. Ignore any phone calls from anyone. Put the ringer on silent.

Soon, you'll be on the plane heading for the most fun ever. Have a wonderful couple of weeks.

Lene Andersen said...

Loved the conversation with the hospital! Classic!!

As for the magazine... I've come to realize that people don't respect your time without you forcing them to do so. I'd be tempted to tell them they can use your photos or get none at all, because you have no more time to offer them. Which is nothing less than the truth.

24 hours and you're off! It's so exciting, my stomach's all upset for you (because that's what happens when I'm about to do something exciting)

FridaWrites said...

Elizabeth, awesome, my husband just got the mail and there are manga books from you! My daughter is absolutely delighted--she's read the first Tokyo Mew Mew but we didn't have any of the others, and I've wondered how we're going to supply the "habit." The library didn't have this series. I will save them for post-surgery reading, whenever that is.

We recently bought the first two Translucents and the kids have read them too--I've meant to blog about that but haven't had a chance (long list).

It is amazing how ABs don't get it. I've heard this from friends as well. Scheduling anything and getting transportation/being able to drive is extremely difficult even with more limited disabilities. Why not take a picture at your apartment or just outside of it? This is our world, where we live, at home. Sometimes I think people have a skewed perception of how many people there are with mobility issues because we're not out in the world as much as everyone else--our outings are fewer. It is so ironic that journalists trying to show what life is like don't get what life is like.

I hope the hospital nerve test lady was just sleep deprived or very tired. Very strange! The nerve test sounds awful--I think they only poked me 10 or 20 times each leg, but what they were looking for was specific spine issues/nerve problems, not broader issues. I wouldn't want more!!

Thanks for thinking of us!!

kathz said...

The appointment call sounds horrible but also absurd - do you think she had a script she was expected to follow, like people in call centres? As for assuming you could drive ...? I know that North Americans tend to take driving for granted (I notice that because I can't drive) but surely they should realise that people needing hospital appointments may find driving just a little tricky.

Have you read James Kelman's How Late It Was, How Late, where Sammy, the main character has lost his sight after being beaten up by the police? It has a similarly absurd sequence where he visits a medical centre and people point direction- s to him and the doctor suggests implausible jobs - like going back to work on a building site and climbing scaffolding, etc. Oh, and the doctor refuses to say definitively that Sammy has lost his sight. I used to think this exaggerated but, reading of your experiences, I understand that it's realism. (James Kelman spent some time acting as advocate for people suffering from asbestos-related diseases so I guess he knows about the systems.)

At least you get to leave this behind, I hope, and have a wonderful time in Japan. I hope the trip is a great success and that it gives you all sorts of insights and ideas to share with me and the rest f your readers.

I hope that's a coherent comment - I find it hard to be entirely coherent when I have a cold, however mild, but I wanted to send very best wishes and say bon voyage to you and Linda.

Elizabeth McClung said...

Cheryl: Yeah, I don't think the people at Monday Mag even have time to talk to each other, much less read this blog. Yeah, I do wonder about how THESE are the people who are setting up the pace of my life.

Stephanie: Your caller sounds like my caller - maybe she was replaced there and got a job in Vancouver - let us home there is but one of them.

I also was chastised, for not going to a test, which the specialist never told me about. But have also had calls we were to appear at specialist offices within 2-3 hours, we come back from movie, check messages, and like you, one saying, "we have made this decision and you must obey" and the second saying, "You are a BAD person for not obeying." YES master?

Goldfish: Thank you, that is a comfort, and now I have a new avenue of places to apply for jobs - while I have NO medical experience I CAN tell time and count days on a Calender!

Yanub: No news of today, so I am sure you are right and they will wait until I am sleeping. I will ignore them. Linda is actually LOOKING FORWARD to the trip, which makes me rather ill since I cannot seem to get out of Panic mode - and DOESN'T she GET how many things are out of our control? (someone needs a chill pill: looking at self in mirror).

Lene: I though the converasation was a classic too.

And believe me, if I could USE force on some people I would. Oh wait, is it more subtle than that, like refusal to be at thier beck and call? I like the FORCE idea better.

My stomach is twisting too.

Tom P. said...

This article reminded me of something very important that I need to discuss with you. I'll call you Monday. Please stay by your phone because I have no idea when it will be convenient for me to call.


Have a wonderful time in Japan. I hope it is everything you dream it will be and more.

Dawn Allenbach said...

I'm worn out just reading about it all.

Vancouver chick = dumb.

Monday Magazine people = dumber.

Wheelchair Dancer said...



Anonymous said...

Beth, do you ever sit and think sometimes, "How do these people find me?"
I have that problem a lot...I attract them.

Neil said...

Dilbert lives!!

Unfortunately, it's the pointy haired boss in charge of all your specialists.

Or maybe he's only in charge of the secretaries of the specialists.

Enjoy Japan!


Stephanie said...

Elizabeth, when I get caught up in anxiety storms, worrying endlessly about things that are beyond my control, I sometimes calm myself by accepting and embracing my helplessness. There is nothing I can do about it right now, so there is no point in expending the energy on the problem.

I learned this from a supervisor I used to work with. One day we were filming on location in New Westminster when he got word that there was a giant screw-up that was happening with the preparation of a future location in North Vancouver. The movie painters were repainting a building that was going to be in the background because the director didn't like the colour of it. The owner of the building was on the sidewalk yelling at the painters to stop, telling them that he hadn't given permission for his building to be painted. Nevertheless, the painters refused to stop because they had been told to paint the building.

My supervisor ran off to a phone to contact people to get the situation straightened out. A half hour later he strolled by, whistling. I commented that he must have solved the problem since he was so relaxed.

"Nope," he said. "I called everybody I could but nobody was answering their phones. I left messages, but there isn't anything else I can do, so there isn't any point in worrying about it."

Relax, those things you can't control will sort themselves out, or you will deal with them when and if they come up, not before.

Bon voyage!

Elizabeth McClung said...

Frida: I'm really glad those arrived for your daughter - everyone should have a little manga!

I agree with you that scheduling and transportation is very difficult - particularly more as the heating on buses makes you hit heat exhaustion and pass out in about 15-20 minutes. Same with many taxis (I ASK for the air con and they put on the VENT straight from the engine - sigh).

I don't think I will take a pic of my apartment and put it up as "my world" becuase while that is TRUE, it is also kinda despressing.

Oh, only 20 times EACH leg, okay, yeah, I am SO calm now! Not! What should I say, "You get 1 needle?"

Kathz: Yes, the assumptions are kind of strange, paricularly when you have to go 45 miles (bus 1.5 hours), on a ferry (2 hours) and then another 50 or so miles (1-2 hours?) and I go into shock if I am awake for more than 7 hours or so. So, how do I go to test the test, are they going to take care of the puddle that is called Beth or just push me out the door and getting back is up to me?

I am sorry you have a cold and I am paranoid I will get one (been taking Zinc for cold, asprin for blood clots, echinasia for cold and flu) as that is a very expensive way to stay in another country, if I have like a 2 week flu!

Tom P. - Good one, I am so used to being told this, I was almost ready to send you an email trying to explain when I figured out it was a joke - for some reason, the people who say these things have little humor. By the by, did Monday Mag call today? No - but I bet they will on Monday!

Dawn: I have absolutely no disagreements with your sharp and insightful assessments.

Wheelchair Dancer:

Er......Woo Hoo!

Cat: I think sometimes, that once you get your name out there in medical systems it is only a matter of time. Or maybe it is that I do interact with a lot of people, it is the 10-40% who drive me to distraction that are so memorable.

Neil: So true! What is scary is how a bad receptionist can mess up your life, and the specialist might not even know it!

We are starting to rev the engines (admitly it is slow take off - tomorrow morn to Seattle, then to airport hotel for nap, then rest, then sleep then up monday morn for plane!)

Stephanie: Yes, that is what I am thinking about the train reservations we DON'T have - that's not MY problem, that's Japanese Rail's problem (unless I don't get on the train, then that really IS my problem).

But it is good advice, I will TRY to keep it in mind, and hopefully the body will listen and let me sleep tonight.

FridaWrites said...

This will arrive late, but I meant why didn't the ridiculous journalist and company take a picture at your apartment while you were there. (My language issues.)

Bon voyage!