Sunday, February 28, 2010
It's different in my imaginary social life, though, where my dear friends come to visit me and we have mugs of peppermint tea and I have other things to talk about besides my long school days and my frustration with my doctors. Man, there are so many people I really, REALLY miss. I just committed to an all-day Broken Social Scene led concert at the Toronto Island this June! I will see Florence and the Machine in April... Wow. What am I getting myself into? This is kind of crazy, but I don't know... I feel like I NEED to have fun. Fun has been largely missing from my life. I often avoid fun situations because I know they'll make me feel worse, but there are times like these when I need to have fun anyway.
I think I'm actually craving an escape more than fun. I need an experience that will require me to test my physical limits, to party with healthy, energetic people. As excited as I am to hang out with my friend at this day-long concert, I can't help but wonder how I will handle the heat, the activity, the excitement. I already have a game plan: I will bring an umbrella (if that's allowed), wear one of my floppy hats and loose clothing and bring lots of layers. I will drink a lot of water. If my legs get too weak and sore or my heart gets too crazy, I will rest through a song or two. I will warn my friend that I may not be my fun, upbeat self for the whole day.
I can't help but think that maybe I plan things so far in advance not just because I'm nervous it won't go well, but because I don't have much else to think about. Well, I do. I'm just too preoccupied with what I'm going through to care about much else. Anyone who knows me will tell you I love music. Nothing comforts me more! By the way, I'm STILL obsessed with Florence and the Machine's album "Lungs."
I've also been listening to Bjork, Radiohead, Yeah Yeah Yeahs, Neko Case and the Strokes a lot. When I have a burst of energy, I use it to bop around to music. Sometimes I even sing along, especially to the ridiculously catchy "Hairspray" motion picture soundtrack.
Anyway, I slept in late, so I don't know if I can sleep yet, but I must try! I have to get up again in six-and-a-half hours.
Saturday, February 27, 2010
I like to practice writing my name by experimenting with different fonts. I imagine how I would write if I was a wealthy British man. Would my handwriting be any different than that of a wealthy British woman? Or how about a poor British woman? Or how about a dog? How would a dog write its name? Oh! Speaking of dogs, I am reminded of an incident that took place a few weeks ago.
I had enrolled in an acting class at the local community centre and for our first exercise we were asked to pretend to be dogs. Naturally, the over-enthusiastic artsies began howling and licking themselves – and I mean licking. These freaks actually sat their on the floor, licking their hands, or “paws”. One guy actually tried to lick the face of the girl beside him. The shy, nervous folk just sat quietly, occasionally muttering an “Arf” and the “too-cool-for-school” group sat together in a corner, pointing and laughing.
I tried to portray my neighbor’s male standard poodle in a dignified manner that I felt would do his well-disciplined, high society demeanor justice. So, like a seasoned actor, I took a few moments to get into role, and then I experimented. First, I got on all fours, stuck my head up high, and pranced from one end of the room to the other. I stopped because it was painful and difficult. Plus, I realized that his highness wouldn’t prance – he wasn’t that high-strung. So to make him appear more relaxed, I incorporated a little strut into his – my – wobbly gait. I raised my head about thirty degrees, spread out my hind legs – my legs – and began to slide on my hands and knees, swaying my hips and shoulders in opposite directions. This walk didn’t seem particular to Winston, either, so I gave up and sat down on my human bum.
“Very nice, class” our lovely instructor said. “I especially liked your impression of one of the Queen’s corgis, Ziggy” (That’s my name, not the dog’s) And that’s when I came to realize that if Winston (THAT’S the dog’s name) was a human, he would probably be British. I began thinking about this more thoroughly:
If Winston was a person, he’d definitely have a British accent, and if he’d come from England, he’d probably lived in a mansion back home, since he was no doubt born into money – being a stuck-up poodle, and I’ve always thought that wealthy people – wealthy dogs -- in Britain lived in mansions, like mini Buckingham Palaces. So if he lived in a mansion, he’d probably think my community, with its post-war bungalows and strip malls to be quite tacky and pathetic. But wait. If he did have money, he wouldn’t live in this area, and if he didn’t live in this area, he wouldn’t have come to this community centre. Oh! I’ve got it! It’s all making sense now! He wouldn’t have come to take acting classes at this community centre in the first place because these classes are really cheap and he could afford to pay a really classy stage actor who would come to his mini-Buckingham Palace to give him private lessons!
“Alright class,” the instructor announced. “Now I am going to show you how I have interpreted my standard poodle’s walk.” (Oooh, she has a standard poodle too!) She crouched, looked down to the floor, took a deep breath, then raised her head and howled. I guess this was her way of “becoming” her dog. Then she got on all fours and walked. One foot – one paw – in front of the other. Very mechanical. I was so shocked by this gross mis-representation of the distinguished standard poodle gait that I got up, put my coat on and walked toward the door.
“Where are you going?” The teacher asked.
“Home,” I said.
“Because a poodle would never come to this class, let alone walk like that.”
I walked out of the room and slammed the door behind me.
As I walked home, I began to wonder just how exactly Winston would speak if he could talk. Now, certainly a number of things must be taken into account here: he must have the vocal cords of a human and the cognitive ability to understand language and string words together cohesively. But if Winston had the capacity to speak language, what would he say? Would he indeed have a British accent? So many things to think about!
I’ve watched movies and television shows where animals talk as humans do, but only to each other (this includes dogs, cats, birds, rats – whatever) and only other animals, regardless of species, can understand. But they do not talk out loud. They look at another animal, think about what they want to say and somehow the other animal receives the message and responds in the same manner. There’s nothing vocal about it. How could this possibly happen? Can animals communicate telepathically with one another? Would dogs speak the same language as their owners?
Ah, none of this makes any sense. It couldn’t possibly work. So if a dog cannot speak, surely he can’t write. I mean, even if he could write, he doesn’t have the proper digits. Not even a poseable thumb! He’d just scribble, I guess. Or maybe he could do a loose drawing of some kind. It would look likely something I tried to draw with my left hand.
Yesterday the sidewalks and the parking lot at my sister's apartment building were pretty snowy, but not calve-deep. It was deep enough that it required more work to walk through, as if on two balance beams -- one for each of my feet -- in ankle-deep water. Horrible simile, I guess. Walking through snow and/or on ice has always made me feel insecure because it seems to make my balance and fatigue issues more pronounced.
I remember having to stay indoors during recess in elementary school because it was too dangerous outside for me. I used to slip and fall easily. I simply wasn't able to catch myself. A fall could dislodge my shunt or break it if I hit my head.
I didn't mind staying indoors because I felt so nervous outside on the snow and ice. Plus, it saved me from having to get my boots and snowsuit on -- tasks that were difficult for me and took me a long time to do for many years. My teachers would let me start getting dressed earlier than the other kids, so I could leave on time. Snow and ice made me more aware of my disability. It also alienated me from my peers who went outside during those recesses and seemed to be able to get dressed in a flash and play in winter wonderland with ease.
I could have let myself resent this season for making me feel different, for making life more difficult for me, but I didn't. I still loved the snow. My sister and I used play together in our snowy backyard all of the time. My mom would put the Aladdin soundtrack on cassette in a tape player, then put the speakers out the window so we could dance around to it. I also loved to toboggan down the small hill in the park of my elementary school and the big hill where my future high school was. These are wonderful memories.
The flakes are still coming down, but they're much smaller now. There is less wind, too. The naked branches in front of my bedroom window are relatively still.
Wednesday, February 24, 2010
in branches that fall from trees
and don’t have to wave with the wind,
but instead crack beneath the feet
of those who step on them.
Victims are interested
in leaves that turn brown, orange and yellow,
then blow into piles
that children jump into.
Dried out, lifeless, part of the ground,
tree droppings wait for snow.
Tuesday, February 23, 2010
I went to the side of the house where my dad keeps his tools. I examined his variety of sledgehammers to try to find the heaviest, bluntest one I could find. I was going to finish this pathetic animal off with a single blow to ensure the slightest amount of suffering possible. I picked up my weapon of choice using both of my hands, spread them apart and lifted the sledgehammer into the air before forcing it into the ground. I knew that sledgehammer would do the trick.
I walked past the side of the house towards the pool, where my sister had told me I’d find the near-dead animal. Sledgehammer propped on my shoulder, I half-triumphantly climbed into the trench between the garden and the pool and followed the trail of feathers to a quivering pigeon that was missing the back of its head. I climbed up into the garden and decided that it would be most humane to slam the sledgehammer into his head, rather than another part of his body. I tried to stand tall, but my legs were quivering so badly by this point that I couldn’t. I aimed the sledgehammer for the head, lifted it into the air and closed my eyes. As I lowered the sledgehammer, I hoped that I would pound where I’d aimed and wondered if I would do a lot of damage to the body. I opened my eyes. The pigeon was not damaged further and still quivering, it’s right eye wide open. Damn. I aimed again, lifted into the air. Bam. I opened my eyes. No more quivering, eye still open.
I am proud that I was able to put my emotions aside and put the pigeon out of its misery. It had to be done. I just wish I was able to express my fears about the killing to my mom and sister, who seem to think that it was easy for me to ram a sledgehammer into the pigeon. I should have told them that my heart was pounding out of my chest and I couldn’t hit the pigeon hard enough the first time because my sweaty hands were sliding along the handle of the sledgehammer. But I put the sledgehammer back in storage, went inside to my devastated sister and mom and said “It’s done,” before going upstairs. I didn't let them see me rub my sweaty palms against my pants.
Sunday, February 21, 2010
It worked! She was completely surprised! Of course, she bawled when she saw us all. After the surprise, I immediately relaxed. Then I poured myself a glass of red wine! It had been a tough week and I was happy to get a buzz. My heart wasn't so happy, though. It went pretty fast. I counted 140 beats per minute at rest. So I didn't drink anymore after that. I also didn't have any of the pizza we ordered because my heart had gone insane the previous time I had had fast food. It could have been a coincidence. Anyway, that night I tried to sleep with my heart going at 170 beats per minute.
One of my mom's friends, whom Mom hadn't seen in 40 years, has had heart problems too. After mom told her about mom about my heart, her friend warned me that alcohol is bad for it. She said two glasses give her palpitations. I figured racing on only one glass was fine until I read on the internet that one glass of red wine a day is supposedly good for the heart. Over a year ago, my cardiologist told me to "live" and have a few alcoholic drinks at New Years if I wanted. Whatever. I don't know what to think. This woman LOVED me and she said she wanted to adopt me because I'm sweet and nice. She also said she felt instantly connected to me and said "You have a heart of gold, but you have to take care of it." I think that's really nice. A virtual stranger concerned about my health. I appreciated her honesty, especially about the connection she felt with me. I didn't tell her my heart was racing. I'm very modest about it.
I was trying to ignore my heart. I was having such a good time at the party. There were so many people there I don't see much! I just couldn't ignore it, though. I was really uncomfortable and I felt weak. I was on my feet for most of the night and they got really sore and fatigued. I'm sure being on my feet/doing work for the party also contributed to the heart racing. I must confess that I wanted to leave the party hours before it ended because I felt I needed to rest. I DIDN'T want to leave, though, because I was having a lot of fun with everyone. I find my body and mind are usually in conflict like this. It's so frustrating to have to hold back or at least feel like I need to or should. It's no way to live, but what can I do?
I don't want to imply that I'm unhappy now. I'm happy that everyone had such a good time at the party. I'd told the guests that the party would be until 5:30 p.m., but it ended up going until 10:00p.m.! Surely this was due to my good hosting and entertaining. Seriously, my family and neighbors and friends were meeting each other for the first time, but getting along like they'd been friends for years. It was beautiful. My mom connected us all!
I'm relieved that I don't have to hide from my mom anymore! Ah, but I'm ticked that I have to do homework today....
Thursday, February 18, 2010
My average school day goes from 8:30 a.m.-3:30 p.m. Those are just my classes. My day is longer with preparation for school and the commute there and back. It really tires me out and by the time I get home I usually feel worse, so I go have a nap and wake up in the evening. Then I stay up all night to listen to music, write for pleasure, write assignments, etc. I've been a night owl for years, but this is the first period in my life that I feel I have no choice but to be nocturnal. I don't see how I could come home and avoid napping. Without recharging first, I wouldn't have the energy or ambition to do my homework.
I cried hard last night after I woke up still feeling sick. And I had developed a crick in my neck to top it off!
Today I have an appointment with one of my instructors who also co-ordinates my program. He wants to meet with each of us to discuss our assignments and get feedback on how we like the program. I didn't do very well on my assignment. There were loads of awkward sentence structures and grammar and punctuation errors. I also didn't do well on another assignment I submitted that week. I was feeling nasty that week. I'm still upset about this confirmation that I don't work well when I'm sick. I feel like I've let myself down. I must tell my instructor about my health situation. I have six instructors and I've only so far told one about what I'm going through. I just want to buck up and get on with my life, but now I see that's not always realistic.
I think I'm nervous about my meeting with my instructor because I feel like I'm about to admit weakness -- defeat, even. I don't want him to think I'm less capable of doing the work than I should be, but I also don't want him to think I'm being careless orthat I'm not smart enough. I just don't see the point. I'm also nervous to tell him about some problems I have with the way my classes are run. There are two classes a week for 6 of my 7 courses. This seems excessive. There's a lot of repetitive or seemingly pointless busy work; some instructors don't provide examples of documents they want us to create... There's other stuff too, but I'd better not get myself all riled up before school...
Anyway, I refuse to ask for extensions because it will make my workload accumulate. Also, I'd have to go to my family doctor to get a note. He's ignorant about post viral syndrome and Dandy Walker syndrome. There doesn't seem to be much point in telling my instructors I'm sick.
It's going to be another long day...
Wednesday, February 17, 2010
3:30-7:30 -- Went to my bedroom and napped in my own bed. No jingling tags or prospect of puppy in danger to wake me, but instead loads of sunlight through my big windows adjacent to each other. In my head I cursed the sun.
7:30 -- Woke up feeling rested, but cursed the late hour as I knew I would be up all night.
7:30-8:00-ish -- Wrote in my diary about how foolish I was to nap.
8:00-10:00 -- Listened to Florence and the Machine, Madonna and Fleet Foxes and contemplated plucking my eyebrows.
11:00-ish -- Walked around the block with my sister and the puppy so he would defecate. Lately, he refuses to do it on our front lawn.
11:30-ish-2:30 a.m-ish -- Wrote letters to my professor friend, my old drama/english teacher/play director; ate fruit and scrambled eggs and read random stuff on the internet.
2:30-3:00 -- Jotted a few notes down for my Project Management presentation today and rehearsed it.
3:00-4:30 -- Lied in bed and tried to sleep.
4:30-6:30 -- Realized that it was impossible to "try" to sleep, so played The Simpsons Game on my Nintendo DS and read the Diary of Anais Nin: Volume 1 to alleviate the boredom.
6:30-6:50 -- Wrote a blog entry about the ridiculous turn of events.
Sunday, February 14, 2010
I loved walking around downtown Toronto in summer 2008 after a day of work at the Spina Bifida and Hydrocephalus Association of Ontario. My favourite span of the walk was from Bathurst and Queen to the Eaton Centre mall. So many cute shops and packed restaurant patios to look into. It was always fairly crowded, but there were few enough people that I could walk briskly without having to slow down to get past people. Almost every day that summer it was sunny and hot. I loved wearing my light, flowy dresses with nothing on my shoulders unless it was windy or rainy. I felt beautiful like a movie star.
I walked for an hour and a half nearly every day after work, usually past the hospitals and into the University of Toronto as well. It was often taxing physically because the combination of heat and activity was hard on my inadequately medicated heart. I walked even when I was dizzy or weak because I loved it so much. I felt that if it was really bad for me, I wouldn't be physically able to do it. I knew my heart was strong and there was no irregular rhythm, so I felt kind of invincible.
My current situation is also not life-threatening, but I don't feel invincible like I did then. I think it's because I knew I could ease my arrhythmia by increasing my medication. In this case, there is no treatment. Maybe the long duration of this illness has prevented me from feeling invincible. I've become jaded. Over these past eight months I have spent a lot of time reflecting on previous illnesses and symptoms -- some mysterious, some explained by my variety of conditions. I just feel like, why should I bother getting excited about getting over the future end of this? I'll still have to deal with everything else.
I hope I learn to feel invincible and undaunted by activity again.
Friday, February 12, 2010
I also had my follow-up with the neurologist. I wasn't relieved that my MRI results are fine because I knew they would be. I was just hoping that the doc would be able to help me feel better. After getting me to walk heel-to-toe, he said my balance issues weren't bad and that if I saw a physical therapist he/she would just ask, "Why are you here?" I told him the balance problems weren't constant. Also, I can often walk heel-to-toe, even during periods where I tip over and have to catch myself or strain to try to keep my feet from rising from the ground. Doc doesn't know why my balance issues aren't constant. I still can't figure out what he DOES know, at least about my Dandy Walker.
He thinks I'm probably dealing with a combination of the Dandy Walker and post-viral syndrome and that my neck condition might also contribute to my disequilibrium. I'm sure my rapid heart rate plays a role too, but yeah... he said these are all just hypotheses. The problem is that it's impossible to know how much of a role each of these is playing in my current condition. Doc said symptoms are "just part of having a body." Really? Because there is no presence of disease, I am "normal." How reassuring. I'll try to think about that the next time I feel myself falling or when the pain makes me cry or when a flight of stairs exhausts me.
This is the second time I've seen the neurologist and both times he's assured me that I'm fine. I keep telling him and other doctors that I know I'm fine, but I feel awful. Doesn't that mean anything? The neurologist said for the second time that "You don't want a diagnosis because that means there's something wrong." Of course I want a diagnosis! I want an explanation for what's been making me sick for the past 8 months. I want to know when I'll get better and how I can help myself feel better. I can't get that information without a diagnosis, but anyway, there's no treatment.
Is there at least something that could help me feel better? Maybe. Time will likely heal the post-viral syndrome; doc says massage therapy could help my neck; orthotics could relieve the feet pain and perhaps support stockings could ease the swelling. I'm sure better treatment for my heart problem wouldn't hurt either. Again, it's a combination of issues, so a combination of therapies is in order, I think. At least I'll know that I'm at least trying to help myself.
Doc said to be patient, which I can do. If I'm not better by June, when I have my routine appointment with the neurosurgeon, I'll ask him for advice. Maybe he'll actually be knowledgeable about Dandy Walker syndrome. My neurologist doesn't know much and doesn't know anyone who would. That's reassuring, isn't it? At least it's nothing that requires treatment, right? At least I'm not seriously ill, right?
The doc made me feel that he didn't consider my quality of life an issue. He had this attitude like I was neurotic and just wasting his time.
Mom and Dad are very supportive. They just want me to feel better. Maybe I will! A lot of symptoms have disappeared like the confusion and bad short-term memory, so my neurologist thinks the other symptoms will improve too. I can only hope and wait! Well, I'll try other things, but I'm far too jaded to bother getting my hopes up.
Tuesday, February 9, 2010
When I want people to know I'm a creative hermit, I wear this. I bought it in England during the summer after university. One of the first of many! It was a big deal to me since we hadn't been allowed to wear hats inside my high school.
I don't really wear this out. I just thought it would be funny to put it up here.I actually did wear this hat out.
Sunday, February 7, 2010
They hurt! And I felt pretty wobbly today. It's like this: anytime I lean in any direction, to any level, while I'm standing, I feel myself start to tip over... Like a teapot, kind of. I keep tipping for a second and then I jolt myself upright into a 90 degree angle to avoid falling. Sometimes I grab onto a door frame or wall for support. Basically my main problem is that I don't compensate well for a change in posture.
I can get pretty wobbly when I walk, like I can't keep my back straight. So I have to concentrate to avoid swaying too dramatically like a pendulum. Not only would I look stupid by swaying like a pendulum, but such dramatic changes in posture would even further increase the likelihood of me losing my balance and having to catch myself or worse: falling. It hasn't happened yet, though, despite the ice and snow outside! Pendulum walking would also hurt my back after a while. When I stand and sometimes when I walk, I can't seem to keep my feet firmly on the ground. I feel my weight shifting to the back and my toes rise up off the floor.
Until I figured out the mechanics of my balance problem, I didn't really think it was significant because I can stand on one foot and often even walk heel to toe, as if on a tight rope. I felt that surely I didn't need a cane because I could walk and stand unassisted. Yes, sure I can, but it shouldn't be as uncomfortable and difficult as it is.
Lately I've been imagining myself walking and standing with a cane when I feel myself tipping or my legs aching. I've also been noticing people's canes and how they use them. Many people with canes seem to limp or walk gingerly. I've also seen people walk a bit without using the cane -- some people don't rely on it completely! I know my Granddad uses a cane when he's out of the house, but he can walk without it. My old boss, too. She wouldn't use it inside the office or to and from the washroom. I would never accuse them of using their canes for attention because I know they have mobility issues. So why do I assume that people will think I'm using a cane for attention? I'm so gosh darned insecure!
I see a lot of those black canes with the "7" shaped foam-padded handles. I think that's the kind of cane I would like to use. Not those hook-handle canes, like what Scrooge McDuck had. Those look hard on the hand. Oh Scrooge... I love you. I have glasses now too, so I can dress up as you for Halloween again, like I did when I was five! I just need a top hat, which is fine because I LOVE hats. When I was little and in love with Scrooge McDuck, I LOVED his accessories. I thought they built so much character because he used them as props: adjust and take off the hat; take off the glasses; tap the cane on the floor to get someone's attention. I STILL think these make great props and I imagine that if I get a cane, I will wrap some sort of chain around it. That way I can shake it and bang it on the floor to get some percussion out of it when I go out with friends and there's music and/or dancing. There are also canes that can be made into seats. That would be good when I have to wait in line for things, like my concert in April to see Florence and the Machine!
Or hey, I could also get a pretty cane for special occasions. A friend of mine sent me this website called "fashionable canes" and there are some with crystal-like handles. Oooh! I'd love this one if it wasn't pink:
http://www.fashionablecanes.com/74640a.html -- I still don't know how to make hyperlinks on here!
How theatrical is this cane! It seems so contradictory, though. I don't want a cane because it will draw attention to my issues and perhaps make people think I'm looking for the attention, but if I do get a cane, I want to use it as a prop, or to get a fancy cane as an accessory!
Let's go back to my first point on the contradiction because I've never explored it before in this blog. See, if I use a cane, people I know and strangers will probably look at me in shock. "Oh my God! What happened? Are you okay?!" Then I'll have to explain why I'm using it -- that I have a Dandy Walker Variant that makes me lose my balance and causes leg fatigue and pain. So the cane will make visible issues that have been mostly invisible. Damn. I'm too modest to talk about myself that often! I think it will upset me to hear myself describe the condition and symptoms regularly.
It could be liberating to talk about everything, though. Perhaps after I keep talking to people about it, the phrases "Dandy Walker" and "neurological condition" will stop feeling so strange coming out of my mouth. Maybe the cane would help me feel more comfortable talking about my issues. It could also be liberating to have a cane because it would make my issues obvious to people. With a cane, my difficulty and suffering won't be as invisible as they are now.
Wow. And I thought I didn't have anything left to write about my health and disability issues! This was one of those beautiful occasions where writing makes me think. Then the thoughts just keep coming, seemingly from nowhere, spilling out of my brain faster than I can type them.