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.
1 hour ago