4.28.2007
The Secret Life of Weirdgrrl
The lure of sites like Post Secret and Hidden Lives has made me realize that the way I project myself to others is somewhat misleading. I mean, I know we all keep parts of ourselves secret and I know we all feel like the world just doesn't understand us sometimes, and that's part of what I'm talking about but not all of it.
I write a lot of fluff on this blog. But if you read between the lines, especially my poetry and the music that I talk about, you might see that the fluff is simply a costume that I feel comfortable wearing in front of others.
No, I didn't write about Virginia Tech even though I'm working on a film to commemorate the Montreal Massacre that happened almost 20 years ago and that I still remember like it was yesterday. I don't write about a lot of what's going on in the world even though these issues are ever present in my mind and weigh heavily on me. I can't even bring myself to write about Canadian poltics much of the time because I get so frustrated that I become incoherent. I vent about President Bush's foreign policy by posting cartoons and clips from The Daily Show, not by offering up the deep political analysis that I know I'm capable of.
Why? I'm not entirely sure. I think it's partly because of my health. That I want to seem like a happy person because I really feel like a burden and I don't want to inflict my burdensome self on someone else. And I think it's partly because of my art. That when I talk about these things in every day life, I'm less likely to have passion to unleash when pen hits paper to write a poem or a script.
Since I've mentioned my health, I'd like to take a moment to talk about it. I've mentioned before that I have various health conditions: Systemic Lupus Erythematosus, secondary Sjögren’s Syndrome, Hashimoto's Thyroiditis with intermittent Hashitoxicosis and the occasional bout of IgA nephropathy. And let's not forget the migraines.
A lot of people compliment me on the positive attitude I have towards my life. Not to say that I don't actually possess a certain amount of optimism, but I feel anything but positive on the inside most of the time. It's not that I'm repressed or trying to be fake, I just can't stand talking about it anymore.
My rheumatologist likes to show me off to her residents as an example of someone whose lab results indicate that I should be non-functional and yet I "present like a well woman." What I can't bring myself to say to her is that I present that way because I have completely changed my diet, my lifestyle and my goals. I am incapable of holding down a job that requires regular hours. I need a minimum of nine hours of sleep a night which is very tricky as I am also an insomniac. It takes me at least one hour (if I'm lucky) to fall asleep. I'm thrilled if I sleep for four hours in a row; two and a half to three hours at a time is more likely. And then I have to try to fall asleep all over again.
I wake up in the morning feeling like I've been hit by a train and it takes a good hour for my morning meds to kick in, but because of the assortment and timing of my meds I can't actually take them all right away. So I'm not really functional until around two hours after I wake up. So there goes more than half of a 24-hour day. Then I need to take breaks every couple of hours so I don't hit the wall of mental and physical fatigue. Needless to say, this is very limiting.
I used to dream of competing in the Olympics as a member of the Canadian Three-Day Eventing Team until I developed my first autoimmune symptoms at the age of 19. I'd hoped that I would eventually figure out how to manage them and still compete, but unfortunately that didn't happen. Then I went to vet school. I figured if I couldn't compete, I could at least treat the top-level event horses. But in my third year of vet school, my Lupus took over my life and I needed to take a leave of absence. I was never able to go back.
Last year, I became involved in the film community here in Calgary. I was working as a freelance writer, text editor and graphic designer at the time and I come from a theatre background, so this wasn't much of a stretch for me. I threw myself into it with abandon because it had been so long since I'd felt such enthusiasm for something, anything. And I've recently realized that I have to accept that I will never be physically capable of directing the feature film that I'm writing. I'm not coping very well with that conclusion.
I hate it when people ask me how my health is because good days are very few and far between. Basically, I struggle with my symptoms every day but I get sick of hearing myself talk about being sick and I also get sick of lying and saying I'm fine.
I hope this doesn't sound like a pity party and I really didn't mean to go on about it for this long, but I guess seeing another dream elude me has been a little too much to bear.
I write a lot of fluff on this blog. But if you read between the lines, especially my poetry and the music that I talk about, you might see that the fluff is simply a costume that I feel comfortable wearing in front of others.
No, I didn't write about Virginia Tech even though I'm working on a film to commemorate the Montreal Massacre that happened almost 20 years ago and that I still remember like it was yesterday. I don't write about a lot of what's going on in the world even though these issues are ever present in my mind and weigh heavily on me. I can't even bring myself to write about Canadian poltics much of the time because I get so frustrated that I become incoherent. I vent about President Bush's foreign policy by posting cartoons and clips from The Daily Show, not by offering up the deep political analysis that I know I'm capable of.
Why? I'm not entirely sure. I think it's partly because of my health. That I want to seem like a happy person because I really feel like a burden and I don't want to inflict my burdensome self on someone else. And I think it's partly because of my art. That when I talk about these things in every day life, I'm less likely to have passion to unleash when pen hits paper to write a poem or a script.
Since I've mentioned my health, I'd like to take a moment to talk about it. I've mentioned before that I have various health conditions: Systemic Lupus Erythematosus, secondary Sjögren’s Syndrome, Hashimoto's Thyroiditis with intermittent Hashitoxicosis and the occasional bout of IgA nephropathy. And let's not forget the migraines.
A lot of people compliment me on the positive attitude I have towards my life. Not to say that I don't actually possess a certain amount of optimism, but I feel anything but positive on the inside most of the time. It's not that I'm repressed or trying to be fake, I just can't stand talking about it anymore.
My rheumatologist likes to show me off to her residents as an example of someone whose lab results indicate that I should be non-functional and yet I "present like a well woman." What I can't bring myself to say to her is that I present that way because I have completely changed my diet, my lifestyle and my goals. I am incapable of holding down a job that requires regular hours. I need a minimum of nine hours of sleep a night which is very tricky as I am also an insomniac. It takes me at least one hour (if I'm lucky) to fall asleep. I'm thrilled if I sleep for four hours in a row; two and a half to three hours at a time is more likely. And then I have to try to fall asleep all over again.
I wake up in the morning feeling like I've been hit by a train and it takes a good hour for my morning meds to kick in, but because of the assortment and timing of my meds I can't actually take them all right away. So I'm not really functional until around two hours after I wake up. So there goes more than half of a 24-hour day. Then I need to take breaks every couple of hours so I don't hit the wall of mental and physical fatigue. Needless to say, this is very limiting.
I used to dream of competing in the Olympics as a member of the Canadian Three-Day Eventing Team until I developed my first autoimmune symptoms at the age of 19. I'd hoped that I would eventually figure out how to manage them and still compete, but unfortunately that didn't happen. Then I went to vet school. I figured if I couldn't compete, I could at least treat the top-level event horses. But in my third year of vet school, my Lupus took over my life and I needed to take a leave of absence. I was never able to go back.
Last year, I became involved in the film community here in Calgary. I was working as a freelance writer, text editor and graphic designer at the time and I come from a theatre background, so this wasn't much of a stretch for me. I threw myself into it with abandon because it had been so long since I'd felt such enthusiasm for something, anything. And I've recently realized that I have to accept that I will never be physically capable of directing the feature film that I'm writing. I'm not coping very well with that conclusion.
I hate it when people ask me how my health is because good days are very few and far between. Basically, I struggle with my symptoms every day but I get sick of hearing myself talk about being sick and I also get sick of lying and saying I'm fine.
I hope this doesn't sound like a pity party and I really didn't mean to go on about it for this long, but I guess seeing another dream elude me has been a little too much to bear.
Labels: film, health, odds and ends, writing
Comments:
First of all, (((huggg))). Secondly, everything you said resonates very deeply with me. Both of my sisters suffer with severe fibromyalgia and other maladies, as well. Neither of them can do much for very long before they must rest and take meds. I admire them both for what they do manage to accomplish each day. I admire you, too. No one knows what it's like to live with a chronic illness - until they do. I appreciate you taking the time to share just a tiny fraction of your day-to-day life as you know it with us. I'm so sorry another of your dreams will not come to fruition, but please know that by sharing yourself as you do with all of us out here, and with all of those you come in contact with on a daily basis, you are impacting people in deep and meaningful ways, which is much more than most people accomplish in their lifetime. I, for one, appreciate it very much.
Wow I don't know where to start! I'm amazed that you can do as much as you do with auto immune illnesses. As Leigh said, unless someone has a chronic illness, they really can't understand what it's like.
Props to you for doing what you can, with what you have. It's more than a lot of people with perfect health do.
Props to you for doing what you can, with what you have. It's more than a lot of people with perfect health do.
Thanks Levanah. Sometimes it's easy to forget the things I have actually managed to do. So thanks for the reminder.
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