Saturday, March 01, 2008

My mid-disability crisis: post april

My heart is being childish today: playing hide and seek and other silly rainy day games called, “Let’s make Beth’s face turn funny colours again!” This has given me the leisure of lying in bed sleeping, staring at the wall or staring at the ground. My great insight out of all of this: I really need to put some posters on my ceiling.

While this has been a recovery day for me, I am asking myself a question: Where am I? Oddly enough, when I don’t get enough oxygen to the brain I ask this of people around me along with “What year is it?” and “What day is it?” However, what I mean is that the medicos have me so turned around that I can see only two things: The first is how I spent my last year and two months (My year in the chair, my year as the medical test patient) and the second is my trip to Japan.

Now, while I am VERY excited about my trip to Japan and can wax on and wax off about it (a little Karate Kid joke for fans out there), I will return and some form or another of life will go on. I have spent the last year and bit making what seemed the best decisions at the time, but mostly living week to week, trying to sort out wheelchairs, then the world of Physiotherapists, Occupational Therapists, Oxygen Treatment, medical tests (of course), then home care, more tests….I think you get the picture. And this is how a year goes, with months thinking that this will all be a memory, the despair, the hope, the fatigue, the depression a.k.a., the wonderful intro to disability world. But how am I planning to live my life in the future? Surviving seek by week, medical test by medical test, living from one badminton Sunday to another?


That is my backdrop: the boxing, the badminton, the time set aside with Linda but I choose more. I think I am having a mid-disability crisis. I don’t want to return from Japan to a cold apartment, a backlog of medical tests and the post-party blues. I want to return, tired, happy and exhausted but eager to get into…….what? I am open to ideas but I have a few weeks to try and decide what to do with my time and I don’t want to live from writing deadline to deadline, from boxing class to boxing class, I want to start something: a dream, a vocation? Not just writing, or a book, which yes, is part of it, but more!

Now, does anyone think that for someone who is having problems consistently breathing this might be a WEE bit ambitious? But then again, has anyone noticed that I would rather try big and fail than decide it is too risky to try.

Think of this as my spring cleaning. You can join in to!

How about a degree? I’ve always wanted to become a lawyer. Down side being that I have problems seeing and even more problems reading. Or maybe finish off those plans to write the academic papers and get them sent off, start myself my own little academic factory here with a few conference applications thrown in: I can’t wait to see their faces where I roll through the door!

My night care person has not transferred to the new Victoria care giving agency, Beacon, she finished her degree and has to move on. I told her, truthfully, that everything I KNEW, everything I relied on as being absolute about who I was as a person is gone or going. I wasn’t much of an athlete but the one thing I had was that I could endure, no one, seriously, no one could out endure me, because I would rather be unconscious or hospitalized than give up. Slow and steady doesn’t win the race, but it keeps you in the game (that’s why I did marathons for example). And the other thing I knew, absolutely knew, was that my brain was maybe not the best on planet earth, but while I stilled lived, I would continue to keep trying to make sure it was (Ego much?). Now, I have problems remembering words, problems reading with greater frequency and problems understanding what is being said to me.

Yesterday, I had great difficulty speaking. In trying to instruct my home care I was having longer and longer pauses between words. Then, as my home care was going out, I asked her, without a pause IN FRENCH, if she was going down to check on the laundry? Oh, okay, could you please bring up the first load; (I caught myself and made an adjustment for using the wrong sentence order) and then smiled and waved, “Merci!”

Now, you would think that lapsing into speaking a language I haven’t spoken since I took two different French classes, at age 19 and at 24 would be great, EXCEPT, I was attempting to ask her those questions in ENGLISH. Luckily my home care worker looked confused and then just said, “I’m going down now….” and fled. As Linda said when I told her, “Well, your brain seems taking some very curious routes to try going around the blocks.” Yeah. Do I have French fluency now? No, I remember about as much as I did two days ago, which is mostly swear words and one short phrase which I re-memorized WHILE speaking it. Great, I’m learning French from fucked-up head days. I can’t wait until the Latin comes back, that should get some of my home care workers calling a priest for an exorcist since most days I look like one of those possessed girls (arcing backwards, eyes rolled back, face green, bad hair day – now I am spouting latin at them, perfect!).

Wait, there was a point. Ah, this is it, I no longer have control on whether I am going to win the “biggest brain on the planet” race – mine is shorting out. So I can’t BE who I KNEW I was either physically or mentally. But, last I checked I am not dead, which means I am STILL HERE both physically and mentally. I can still type, and when I can’t I have Dragon 9 (once I figure out how to make it stop blowing up my computer). And quite honestly, shaving a significant percentage off the old cranium isn’t going to change my work ethic (work till you drop, then use the dictaphone) but will be giving me a new point of view – let’s write about it! Let’s do something with it! Yes, okay, we can have a sad little picnic at the graveyard for part of Beth’s brain, but afterward, let’s find something to DO!

Linda asked me one of those personality tests she got paid over $100 to do as part of her work this week and in one question you had to answer what you wanted most of all. And in my heart, what I always wanted was answer three: “To be accepted and valued as part of the group.” Yup, that’s my secret desire. But I always give it up for what was answer one: “To make an impact.”

Kind of sad isn’t it, if I gave up the one (making an impact), I could probably fade into being part of a group, because I wouldn’t constantly pushing the boundaries, poking my nose where it isn’t wanted, making waves and that whole bag. Oh well, next life I will be one of the mushrooms in a circle and get my desire until I am found, picked and served up at an exclusive LA restaurant. For now, April is rolling towards us and when I get off that plane, I want a twitch in the fingers and a glint in the eye which says, “I know where the gasoline is.....”

Well, that metaphor got away from me. What I mean is I want a plan, one that DOESN’T involve prison. One where I look forward and not back at “The year that was.” Okay, had that year, the Doctors all had fun and good for them. I expect I will keep seeing them for the rest of my life. Look beyond that. Yes, on oxygen, funky failing heart. Look beyond that. What do you see? Tell me, because I need to see it too.


cheryl g. said...

Hmmm, goals - let me think on it...

You mean all that Latin I took may finally come in handy? I also have some French so it seems that we will still be able to communicate even as your brain maps out new paths.

kathz said...

Years ago I knew a man with very serious cerebral palsy who qualified and worked as a lawyer. It can't have been easy, especially as there weren't computers in those days - at least, only in very lucky university departments or very rich companies. So law is a possibility.

Perhaps your sudden shift into French suggests learning another language would be good (not French, if it has bad associations, although a vocabulary of swear words is always a good starting point). You could go for a series of language qualifications - and another degree, perhaps. The internet is fabulous for maintaining languages. If you want to prompt your Latin to return, try Vikipaedia . Mind you, I'm hooked on Wikipedia in Scots.

As for what I see in you: someone who won't stop fighting and campaigning, someone made angry by hatred, cruelty and injustice, someone who hasn't stopped learning and growing, someone with delight in the world and a capacity for love and friendship, someone who will always seek out the next challenge, someone I like to think of as a friend.

Lene Andersen said...

"next life I will be one of the mushrooms in a circle and get my desire until I am found, picked and served up at an exclusive LA restaurant."

Love that even in your metaphors, you shoot for the moon. No being munched by a woodland creature for you! ;)

Will get back to you on the future thing. Too medicated to prognosticate.

Gaina said...

Of course it's a wee bit ambitions, it's downright madcap! But nobody ever achieved anything of note by staying inside their comfort zone. As for making an impact versus belonging to a group? Well the people who've made the biggest impact in many areas were part of a movement - Emmaline Pankhurst, Nelson Mandela, Edvard get the idea :)

I was really scared when I started my Art and Design degree - I knew I liked mucking about with photoshop but I couldn't really get my head round 'Gaina the Artist'. I nearly quit the week after 'Freshers'! I realised at that moment, that I didn't know who I was, and hadn't done so for quite a few years.

However, I just decided I had to let the panic wash over me and continue and I'm so glad I did because I do believe I'm having one of the most rewarding experiences of my life so far. It's taken me 35 years (OMG! am I REALLY that old!?), but I have found something that really moves and excites me, and I have made a very special set of friends who will do what they can to help me get as much out of this course as possible. The journey can be difficult, at times painful and there will be people you love who just don't get what you're trying to do, but it's all worth it, trust me.

What are you truly passionate about? What's your 'Hot Potato'? (everybody has one). Start there and work at finding people who share that passion and are willing to facilitate your envolvement with it, because they do exist!

I'm as excited about your new enthusiasm as you are! You're always welcome to email me if you fancy chatting about it, I'm full of ideas (...or is that full of shit? **shrug** maybe both. LOL)

em said...

I believe that good can come from anything. Anything. Note the word can. I don't think it always does, and I'm not arguing for shitty experiences. I know this probably sounds trite. But it's coming from my life, which includes some Very Bad Experiences. Even the worst experience has given me gifts.

I'm just a lemonade from lemons sort of person. I think that stems from the uncontrollable desire to have power in my own life.

So one thing your last year has given you is access to another part of yourself that was occluded by your two biggest traits, endurance and intelligence. You are trying to find out (to sound like a hippie) who that person is.

This is the part of your post that stopped me:

Linda asked me one of those personality tests she got paid over $100 to do as part of her work this week and in one question you had to answer what you wanted most of all. And in my heart, what I always wanted was answer three: “To be accepted and valued as part of the group.” Yup, that’s my secret desire. But I always give it up for what was answer one: “To make an impact.”

It stopped me because another thing I believe is that following the secret desire is a positive move. And also because in my obsessive find-something-good-in-the-badness view, this looks like something the last year could give you: a chance to let yourself have your secret desire.

I can't tell you what is going to light your fire, in fact it's arrogant as hell to even write this much. But I hope that you take your secret desire into account as you make your decision. Personally, I think you are going to make an impact no matter what you decide to do. That seems to me to be who you are. A person can make an impact while working as part of a group too.

Neil said...


You were right when you answered "my question:" you ARE Gonzo! (the muppet, I mean.)

Being part of a group is okay, but since you seem to automatically bite off more than you can chew (or as much as you can chew), you're probably going to be the leader (or among the leaders) in any group. Like this group of us, for instance. :)

You could take up animation, and do a completely over-the-top autobiography as an educational tool for those who have a similar disease (syndrome? Symptoms, there's the word) a la John Cleese. Yeah, he has done educational videos: Dr. says "you have X. Here, watch this Cleese video (in which he explains X clearly, calmly, with humour when needed, and intelligibly) then come back and we'll discuss your treatment."

Cleese's videos save time for the doctors - they don't have to spend time explaining the same thing to every new patient with X, and for each video, Cleese did a GOOD job of interviewing experts in the field of the disease he discussed. Never saw any of them, just remembering a CBC interview with the man and his MD researcher partner.

Or. God help you, you could go into politics. Or lobby the Feds for the rights of the disabled. I bet you'd do well at that.

Darn, I wanted to be brief here. (sigh)

qw88nb88 said...

TAG! You're it!


yanub said...

Presenting papers at academic conferences has an ego-inflating cachet, but the truth is that it is wallet-deflating. Unless you have an institution subsidizing you, it can be quite expensive since you have to cover costs of going, staying, and conference fees. On the other hand, presenting keynote addresses can be lucrative, and the fact that you can't really speak right now shouldn't be a deterrent. Stephen Hawkings can't speak either, but he gives paid presentations. I know I'd pay to see you.

elizabeth said...

When I get drunk I can speak Spanish fluently. Kind of funny.

I like the idea of animation. Disabled anime?

Anything you decide - I can't wait to see you do it.

Dawn Allenbach said...

At the risk of sounding all guru -- no one can decide your future but you. Any suggestion I could make would be colored by my own experiences, and those don't ring for you. You need to look inside yourself and find that secret desire that Em mentioned. Do what you've always wanted to do, and to hell with anyone who would poo-poo it. Following your dream will quite likely take you out of your comfort zone (mine moved me to a city 1000 miles from home where I knew NO ONE) -- and THAT'S when you'll know you're on your right path!

shiva said...

You could do a degree in disability studies - that's my "one way out of this shit" perseveration at the moment, for better or worse...

Actually, the mention of "disabled anime" reminded me of something you might be able to identify - my anime fan friend showed me a video called "AMV Hell", which basically consists of clips from anime spliced with bits of music for "hilarious"/bad-taste/headfucky purposes. We were slightly drunk.

Anyway, one clip in it featured a girl in a wheelchair with bright pink hair, who apparently had some sort of lightning or electricity-zapping powers. My friend didn't know what it was from, so i was wondering if you might have any idea... ?

Michael said...

Keep doing what you want to do until you can't do it anymore: feed the squirrels, play badminton. Catch up on all of the movies that you've missed. Write your biography. Throw yourself a wake -- are you Scottish or Irish?

What have you always wanted to do? Skydive? Undersea diving? Ride an elephant? Take on hang gliding?

Like Em said, you are the only one who can decide what you're going to do.

Just remember that we will all be here behind you, supporting you.


Elizabeth McClung said...

Cheryl: while you may know mass, I know lots of latin swear words and dirty lines since OUR final was to translate the rude things scrawled on the walls of Pompeii.

Kathz: Sadly, form of dyslexia means that my written and spoken languages have to be learned seperately, and only at grad level do they tend to do that. But yeah, why not a law degree? Cool, I think of you as a friend, and yes, I guess I do want to ride a horse into parliment and plant a flag of some sort - maybe I could become a souless bottom-feeder....I mean a lobbyist!

Lene: Yes, well, it might be considered sad that the closest I can think to "group bonding" is a ring of mushrooms - will await your wisdom on my future.

Gaina: I think the question I take from you is "What I am most passionate about?" Because while I have always done things becuase they interest me, that isn't quite the same thing as being passionate. So hmmm, what would WANT to make me get out of bed?

I also am intrigued by this idea of a movement because you look at like Rodin and he seemed so alone in many ways and yet now we group him as part of a "movement". Hmmmm, lots to think about.

Em: I don't think it is arrogent at all. The truth is, that either I get frustrated because groups take so long so I subtly take over or to be honest, I don't know if I ever truely make the leap and commit myself to a group project, becuase I don't know how to trust anyone creatively besides me (now THAT sounded arrogent) - so can I become bigger than myself if I take the leap into group work? I don't know.....but I will think about it. I still don't think I will fit in or be accepted. It just isn't to be as Linda's test said, there are people called, "Masterminds" who while 90%+ see things from earth, they are SO far out there, that hardly anyone understand WHAT thier point of view is - Linda said, "That's you." I said, "No need to be nasty!"

And you are right, I need to answer the question: who am I without these two things I have relied on my whole life. I think that is more than a 15 minute puzzle.

Neil: Yeah, I am Gonzo - so totally! The interviews are a good idea actually because I seem to have an odd knack of getting people to tell me almost anything (including secrets they having told anyone) within about 10 minutes of meeting them. Usually because I say, "Oh you used that word XXXXXX, that's an usual word, why did you pick that one?" And out come the life story.

I could do politics, do a sort of "reform party: WE advocate for a Canada which is designed for PWD's but accessible for many, or perhaps some able bodied people (depends how closely you conform to being a PWD)"

Andrea: Thank you I will try to do this on Monday and no touch a single book until then so as not to rig the event to make me look smarter.

Yanub: yes, I mean, I would need to do two factories, one for academic papers and one for grant proposals (do you think they would notice if I 'cut and paste' the majority of the proposal?). Considering the state of my health and speak, I am thinking - why not comedy? Comedy clubs? I have noticed however that able bodied people often don't get disability jokes, the real "in jokes". And there is ALWAYS the erotic sector, in fact, I think I might START a new fetish, like I don't know, hitting people with a nerf bat FROM a wheelchair and end up with hundreds of people with the wheelchair nerf fetish. Something I could tell my mom over tea!

Elizabeth: Actually I was going to write a letter to Ghibli and ask him to DO a story about disability in anime - since he loves movies about flying and when I am helpless in bed, with only my mind left to me, I tell linda, "Look, I'm flying."

Dawn: What does a gal with high enthusiasm but a short attention span do? Find the passion - okay that is my theme, I will ask Linda as she knows what makes me truely passionate and what I might have talked about doing for years, and hey, no time like the present for new start (ack! I sound like an infomercial - shut me off!).

Shiva: yes, a degree would give me structure and focus (and deadlines!) - I am interested in that anime which sounds like FLCL but she has a moped not a wheelchair, I will find out - the early co-director with Ghibli did a film based on an automated wheelchair/hospital bed for the elderly that goes out of control - not available in North America but I saw it and will try to find the title for you as there is a girl who is there. Hmmm - will comment back when I have more details.

Michael/Racoon: Thanks, well Japan is the big one - always wanted to go, always put it off, joined the JET program then stopped when they wouldn't put Linda and I together (didn't recognize our 'marriage'). But beyond that, I think, quite honestly, I would like to do either film making or scriptwriting or both. The problem is that I don't get excited by panning through buildings or this effect or that effect, I am more, 'What do I want to show? What do I want the person to feel?' and go from there. Getting funding for that might be a WEE difficult, but maybe getting a script done - or in a partnership, is a first start. Obviously I would like to do more novels and write, but right now, knowing the effort and months that would take, in total isolation, I don't know if I could hack it. I think I am an interesting writer, but is a fair chunk of the rest of my life the price to pay for writing the best thriller in 50 years (since there is one particular book I simply can't out-write, it is too good)? Dunno. About the writing, I don't mean that I would MAKE the best thriller, I just mean, when I write, I always aim to write the best that has been done, it seems odd to aim lower, since I am pretty sure I will end up lower anyway and eventually have to say, "This is it, I can't do any better in the time I have"

kathz said...

No-one has to speak Latin or Classical Greek - and, as I enjoyed learning Greek more than anything, I would recommend it. (You get to read Aesop's Fables and bits of Herodotus within weeks of starting.) But I don't know how you'd find learning a new alphabet - it would depend on your form of dyslexia, I think.

And riding a horse into parliament and planting a flag sounds a great idea - do you mean the parliament in Ottawa with the miniature British Museum Reading Room nearby? I've been there and it looks like an excellent place for flag-planting. You'd look way better than the statue of the queen on her horse. (But I still think there'd be something to be said for a chariot, like Boudicca, especially since Linda - and Cheryl perhaps - could accompany you.

Incidentally, if I'm a Muppet, I'm Animal. I have always known this.

em said...

Well, since I'm being arrogant, (thanks for saying I'm not) I'm going to say this one more thing. In your answer you said that you don't know how to trust anyone creatively besides you. Well, I suspect that is because you are meticulous in your pursuit of excellence. And yet, there are others who have that skill. I believe what Linda said about your long view of things. It's obvious in your writing. I don't know... follow the trust for a bit and see where that leads. Maybe?

And if I'm a Muppet, I'm Beaker. Deeply anxious, shock of red hair, and always messing things up. Yep.

Dawn Allenbach said...

*waves hands* See? See? Scriptwriting! I'm totally freaking serious!