I started my new MS treatment almost two months ago. So far, not so good. I’m not surprised. This is the fifth different treatment I’ve been on that hasn’t helped. Well, maybe it’s helping in minuscule ways to prevent further relapses and more scars from forming in my brain, but my day to day experience leaves a bit to be desired.
Every couple of minutes my left eye goes completely out of focus and I cant see more than a blur of anything. My mouth distances itself from control and I feel as if I’m speaking with someone else’s dead tongue. That’s a bit morbid, oh well. My wife says I don’t sound that bad and she can understand me. Still it’s not an enjoyable experience.
The most frustrating part is calling the "helpline" provided by the pharmaceutical company that makes the medicine. I described my symptoms to the nurse and she politely replied:
"Well, I am not in a position to provide you with any medical advice. The issues you have described are not on our list of expected side effects. You should really discuss this with your doctor."
Aren’t you a nurse? Shouldn’t you be trained and prepared to assist the patients that call with problems? Tell me again why they call it a "Helpline"? I'm confused.
The last time I saw my neurologist, he basically told me:
"You have a degenerative neurological disorder. There is no cure and it's only going to get worse. You just have to be positive and get used to it."
Needless to say, that chapped my hide more than a little bit. I’m still seething from that and it was over two weeks ago.
Fortunately I have a wonderful wife and kids who are helping me deal
with it all in stride. I'm more lucky than I deserve to be.
I can also escape into my writing. I can give my pain away to some unsuspecting fictional character and never get sued or arrested for it. Someone else will absorb my vertigo and disorientation into their fabricated world to meet some grisly end or find a spectacular love that can save the inter-dimensional multi-verses from destruction. Who knows. It's all up to where the fingers of my left hand decide to land on the keyboard.
Escape. Sometimes we all need to. The real world is our harsh mistress. She beats us bloody and doesn't have the common courtesy for a reach around. Stories take us away from all the bullshit that makes us feel like crap. Movies, tv, cartoons, books... We slip the headphones on, close our eyes and immerse ourselves into Bach, Beethoven, Radiohead or Woodkid, it doesn't matter what. Get me out of here! At least for a little
while.
There are some of us drawn to creating our own escape. Writers, painters, musicians, film makers... We're all storytellers. Escape Artists.
Creating is as essential to life for us as breathing. It is for me. I don't view
it as leaving everything behind. It's my escape into the reality hiding inside my head and heart.
Are the images in our heads not real simply because we can't physically touch them? They are no less ephemeral than a telephone conversation we might have with a friend. The words float over the line and soon after, their sound disappears. How are they real? Sorry. I’m getting all Matrix now. Red pill or Blue pill?
I guess the good thing about dealing with all of this suckyness is that I have a new story in the works that I’m excited about. Don’t worry, there are no demented squirrels this time. I can’t promise that other friendly woodland creatures won’t venture into some demented, nightmare territory. What would be the fun of that if they didn’t? I’m working on a handful of short stories that I’m looking to try to publish in the next few months as well. Cross your fingers and your spleens!
Every couple of minutes my left eye goes completely out of focus and I cant see more than a blur of anything. My mouth distances itself from control and I feel as if I’m speaking with someone else’s dead tongue. That’s a bit morbid, oh well. My wife says I don’t sound that bad and she can understand me. Still it’s not an enjoyable experience.
The most frustrating part is calling the "helpline" provided by the pharmaceutical company that makes the medicine. I described my symptoms to the nurse and she politely replied:
"Well, I am not in a position to provide you with any medical advice. The issues you have described are not on our list of expected side effects. You should really discuss this with your doctor."
Aren’t you a nurse? Shouldn’t you be trained and prepared to assist the patients that call with problems? Tell me again why they call it a "Helpline"? I'm confused.
The last time I saw my neurologist, he basically told me:
"You have a degenerative neurological disorder. There is no cure and it's only going to get worse. You just have to be positive and get used to it."
Needless to say, that chapped my hide more than a little bit. I’m still seething from that and it was over two weeks ago.
Fortunately I have a wonderful wife and kids who are helping me deal
with it all in stride. I'm more lucky than I deserve to be.
I can also escape into my writing. I can give my pain away to some unsuspecting fictional character and never get sued or arrested for it. Someone else will absorb my vertigo and disorientation into their fabricated world to meet some grisly end or find a spectacular love that can save the inter-dimensional multi-verses from destruction. Who knows. It's all up to where the fingers of my left hand decide to land on the keyboard.
Escape. Sometimes we all need to. The real world is our harsh mistress. She beats us bloody and doesn't have the common courtesy for a reach around. Stories take us away from all the bullshit that makes us feel like crap. Movies, tv, cartoons, books... We slip the headphones on, close our eyes and immerse ourselves into Bach, Beethoven, Radiohead or Woodkid, it doesn't matter what. Get me out of here! At least for a little
while.
There are some of us drawn to creating our own escape. Writers, painters, musicians, film makers... We're all storytellers. Escape Artists.
Creating is as essential to life for us as breathing. It is for me. I don't view
it as leaving everything behind. It's my escape into the reality hiding inside my head and heart.
Are the images in our heads not real simply because we can't physically touch them? They are no less ephemeral than a telephone conversation we might have with a friend. The words float over the line and soon after, their sound disappears. How are they real? Sorry. I’m getting all Matrix now. Red pill or Blue pill?
I guess the good thing about dealing with all of this suckyness is that I have a new story in the works that I’m excited about. Don’t worry, there are no demented squirrels this time. I can’t promise that other friendly woodland creatures won’t venture into some demented, nightmare territory. What would be the fun of that if they didn’t? I’m working on a handful of short stories that I’m looking to try to publish in the next few months as well. Cross your fingers and your spleens!
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