Last night, due to my early release from the hospital, I was able to attend a cabaret in LaCrosse that my brother completely envisioned from nothing and created: I’m talking promoted/produced/directed/choreographed/starred. He procured funding from patrons. He asked old college friends to come back and star, and they turned out in full force—trekking across country to join in. He asked my dad and sister to play guitar and drums, and another childhood friend to lend her talents on the keyboard, and I got to sit in the front row and watch this magic come together.
It was called Turning Point.
I watched him take these disparate songs and people and ideas and meld them into a cohesive show. There wasn’t a “plot”—just songs from different musicals performed in rapid-fire succession—but the intention and purpose was clear all the same. This was a show with a message.
And it spoke to me.
I heard it almost subliminally, through waves of emotion and buzzes of energy. The spirit of the show was raw and beautiful, like a fresh wound soothed by balm. That spirit infused everything, too—it was obvious in the love the performers shared for each other, for their craft, for these songs. I felt like I was watching something so intimate, so personal, that I was almost embarrassed—like I had walked in on something I wasn’t meant to see. And yet…there it was: laid bare on a stage, that display of emotion, ugly yet pure, to let those who watched it know that they are not alone.
Art is born of suffering. It must be so to connect. Suffering does connect us—I learned that this past year.
The purpose of art is to let others know that they are not alone. It gives hope. It comforts. It uncovers darkness and shines its light upon it.
I hope to someday create something that beautiful, with a message so powerful that it radiates and suffuses the darkness in hints and suggestions, through tiny cracks, much like sunlight.
Let the sunshine in.
Sunday, January 25, 2015
Wednesday, January 21, 2015
Sweet Freedom: Epilepsy Monitoring Unit, Day 3
This morning, when the nurse came in to check my vitals (after six whole hours of sleep!), she asked me a bunch of questions to see how “with it” I was, and she asked me if I knew what day it was.
Ohhhhh, I knew.
I knew because one year ago today, on January 21, 2014, I had a seizure while driving home from work. That incident completely changed the trajectory of my life.
And today, one year later, on January 21, 2015, I was told that I am being released (earlier than expected, even!) from the Epilepsy Monitoring Unit in Rochester later this afternoon.
Funny how that came full circle, on today of all days—a good omen, I hope.
These tests proved that I am actually epileptic. There was a concern that I might not be—that there might be something else wrong instead, some new horror. So that’s good. And it also means that I don’t have to change the title of my blog. (Whew.)
They found that in addition to seizures, I am also having these unexplainable “spells.” (The doctors could not describe them any better than that. My body seems to act like it’s having a seizure, but my brain waves were not showing any seizure activity, so…?) They want me to come back for more testing if the spells do not improve.
Some of these “spells” happened while I was on that second medication, so I didn’t actually have any seizures while on the Vimpat like I had thought. (Which is good news. They prescribed a combination of Keppra and Vimpat for me to try, and hopefully, that helps.)
As for the spells, they are most likely stress-related. (I have been a nervous wreck since I was diagnosed—I live in constant, sometimes paralyzing fear that I’m going to have a seizure, and I’m sure that has taken its toll on me.) The doctors said that I might have to have further testing in a spells clinic someday, but in the meantime, they told me to try Cognitive Behavioral Therapy to try dealing with them. This means I need to try talking through my problems with someone.
Or, better still, writing about them.
Yeah. The doctors actually told me to write.
It sometimes seems like the whole universe is telling me to just…write.
So I’m going to get back in that habit, and let writing save me, and hopefully, a year from today, I’ll have some more awesome, life-changing news to report.
Ohhhhh, I knew.
I knew because one year ago today, on January 21, 2014, I had a seizure while driving home from work. That incident completely changed the trajectory of my life.
And today, one year later, on January 21, 2015, I was told that I am being released (earlier than expected, even!) from the Epilepsy Monitoring Unit in Rochester later this afternoon.
Funny how that came full circle, on today of all days—a good omen, I hope.
These tests proved that I am actually epileptic. There was a concern that I might not be—that there might be something else wrong instead, some new horror. So that’s good. And it also means that I don’t have to change the title of my blog. (Whew.)
They found that in addition to seizures, I am also having these unexplainable “spells.” (The doctors could not describe them any better than that. My body seems to act like it’s having a seizure, but my brain waves were not showing any seizure activity, so…?) They want me to come back for more testing if the spells do not improve.
Some of these “spells” happened while I was on that second medication, so I didn’t actually have any seizures while on the Vimpat like I had thought. (Which is good news. They prescribed a combination of Keppra and Vimpat for me to try, and hopefully, that helps.)
As for the spells, they are most likely stress-related. (I have been a nervous wreck since I was diagnosed—I live in constant, sometimes paralyzing fear that I’m going to have a seizure, and I’m sure that has taken its toll on me.) The doctors said that I might have to have further testing in a spells clinic someday, but in the meantime, they told me to try Cognitive Behavioral Therapy to try dealing with them. This means I need to try talking through my problems with someone.
Or, better still, writing about them.
Yeah. The doctors actually told me to write.
It sometimes seems like the whole universe is telling me to just…write.
So I’m going to get back in that habit, and let writing save me, and hopefully, a year from today, I’ll have some more awesome, life-changing news to report.
Tuesday, January 20, 2015
Sleep Deprivation: Epilepsy Monitoring Unit, Day 2
I am really freaking tired.
But I’ve had 5-7 seizures, so I have good reason—seizures are tiring. I push a button when I feel them coming on, and then a bunch of people come running into my room and ask me a bunch of questions while it’s happening: Where are you? What’s your name? Where’s the ceiling? Can you read this? (Then they hold up a piece of paper that says something about whiskey and water being a popular drink in Texas, and I have to read it aloud.) I’ve been partially conscious during these episodes, so I remember doing these things. It’s weird to be both aware and unable to control yourself.
It doesn’t help that they are depriving me of sleep, too, in an attempt to trigger more seizures to collect more data. I was kept up until 2 am and woken up at 6. And they keep bringing in exercise bikes and treadmills and making me use them (while strapped into that stupid jumper, which is pretty much like wearing a sweat belt). I love getting up and moving around (I am sick and tired of laying around), but I wish I didn’t have to wear the jumper/safety harness.
But I’ve had 5-7 seizures, so I have good reason—seizures are tiring. I push a button when I feel them coming on, and then a bunch of people come running into my room and ask me a bunch of questions while it’s happening: Where are you? What’s your name? Where’s the ceiling? Can you read this? (Then they hold up a piece of paper that says something about whiskey and water being a popular drink in Texas, and I have to read it aloud.) I’ve been partially conscious during these episodes, so I remember doing these things. It’s weird to be both aware and unable to control yourself.
It doesn’t help that they are depriving me of sleep, too, in an attempt to trigger more seizures to collect more data. I was kept up until 2 am and woken up at 6. And they keep bringing in exercise bikes and treadmills and making me use them (while strapped into that stupid jumper, which is pretty much like wearing a sweat belt). I love getting up and moving around (I am sick and tired of laying around), but I wish I didn’t have to wear the jumper/safety harness.
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| 1. This is the thingy that my headdress wires are plugged into, and this thingy is hooked up to a computer. Don't ask me how it works--I have no idea. 2. This kind fellow refills my conductor gel and itches my scalp for me. 3. The second drug they had me try. (I'm not sure if it worked, though. I had two seizures in two hours after taking it.) |
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| 1. Getting my exercise. 2. The "motivational" (and highly ironic) calendar in my new room: I can't move, thankyouverymuch. At least, not without assistance, so thanks for the "encouragement." 3. Several times a day, they make me get my "move" on--no matter how tired I am. |
Monday, January 19, 2015
My Adventures as a Cyborg: Epilepsy Monitoring Unit, Day 1
So, here I sit—confined to a hospital bed for the next 4-7 days, restricted to button-down tops and blue gowns, with what feels like a thousand electrodes glued to my scalp (and hair). I’m in the epilepsy monitoring unit (or EMU) in Rochester for an extended seizure study.
I’ve tried two (sort of three) epilepsy drugs now over the past two years, and they have failed. Since switching to Keppra alone, I’ve been suffering very frequent seizures, but they have been minor, so I haven’t really been writing about them. They’ve just become part of my routine. I’m tired afterwards, but I am not convulsing or hurting myself anymore, so…? Not a whole lot to say.
I’m here at the EMU to pursue other treatment options, to see what is possible, because I am coming to terms with the fact that I really am disabled, and that I will not be able to do much as long as things are this way.
It’s a pretty shitty realization, let me tell you.
I had a 7:00 check-in this morning, and hubby was my rock—I love that man. He got me here last night, watched Downton Abbey with me and found me apple pie and ice cream after 9 pm—quite a feat on a Sunday night—and then he snuggled me to sleep in the Kahler Grand Hotel (a historical relic—the amenities reflect its age, but it’s still a cozy place). He carried my luggage, checked me in this morning, ordered me breakfast, asked the nurses and doctors all the right questions, and he helped me to the bathroom twice (I cannot get out of this bed without assistance—frustrating—and now that they have reduced my medication, I require this contraption that looks like a baby jumper, lest I fall and sue the hospital for neglect—see pictures). He also watched several morning talk shows with me, told me I looked like a sexy cyborg, hugged me the best he could given my headdress, and kissed me goodbye.
Sexy is a stretch, but cyborg may be accurate. I have dozens of colored wires glued to my head and that are all hooked up to a computer. (This is why I am bed-ridden—well, that, and in case I have a seizure. They don’t want me to hurt myself.) That’s the purpose of this study—to have seizures. They’re reducing my medication to increase the likelihood that I’ll have one, so they can capture my brain’s activity using this nifty headdress thingy and try to figure out what’s going on inside my head.
I’m not sure I want to know, to be honest.
But I must be brave and find out.
1. Me, pre-Frankenstein. 2. The electrode headdress. 3. Dots made by blue eyeliner to mark electrode attachment points. 4. Gluing on the electrodes. (This smells horrible.) 5. Finished product.
1. Doctor's orders--I need help to get up. Ugh. 2. Sliding my arms through the baby-jumper thingy. 3. The ceiling track that helps catch me if I fall. 4. Bathroom selfie. (It was very, very hard to pee wearing all these wires.)
I’ve tried two (sort of three) epilepsy drugs now over the past two years, and they have failed. Since switching to Keppra alone, I’ve been suffering very frequent seizures, but they have been minor, so I haven’t really been writing about them. They’ve just become part of my routine. I’m tired afterwards, but I am not convulsing or hurting myself anymore, so…? Not a whole lot to say.
I’m here at the EMU to pursue other treatment options, to see what is possible, because I am coming to terms with the fact that I really am disabled, and that I will not be able to do much as long as things are this way.
It’s a pretty shitty realization, let me tell you.
I had a 7:00 check-in this morning, and hubby was my rock—I love that man. He got me here last night, watched Downton Abbey with me and found me apple pie and ice cream after 9 pm—quite a feat on a Sunday night—and then he snuggled me to sleep in the Kahler Grand Hotel (a historical relic—the amenities reflect its age, but it’s still a cozy place). He carried my luggage, checked me in this morning, ordered me breakfast, asked the nurses and doctors all the right questions, and he helped me to the bathroom twice (I cannot get out of this bed without assistance—frustrating—and now that they have reduced my medication, I require this contraption that looks like a baby jumper, lest I fall and sue the hospital for neglect—see pictures). He also watched several morning talk shows with me, told me I looked like a sexy cyborg, hugged me the best he could given my headdress, and kissed me goodbye.
Sexy is a stretch, but cyborg may be accurate. I have dozens of colored wires glued to my head and that are all hooked up to a computer. (This is why I am bed-ridden—well, that, and in case I have a seizure. They don’t want me to hurt myself.) That’s the purpose of this study—to have seizures. They’re reducing my medication to increase the likelihood that I’ll have one, so they can capture my brain’s activity using this nifty headdress thingy and try to figure out what’s going on inside my head.
I’m not sure I want to know, to be honest.
But I must be brave and find out.
 |
1. Me, pre-Frankenstein. 2. The electrode headdress. 3. Dots made by blue eyeliner to mark electrode attachment points. 4. Gluing on the electrodes. (This smells horrible.) 5. Finished product.
 |
1. Doctor's orders--I need help to get up. Ugh. 2. Sliding my arms through the baby-jumper thingy. 3. The ceiling track that helps catch me if I fall. 4. Bathroom selfie. (It was very, very hard to pee wearing all these wires.)
Saturday, January 17, 2015
An Apology to my Body.
Dear Body,
I’m so sorry. I’ve treated you like shit for the last 32 years and I’m sorry. It’s a wonder that you’re still with me.
I’m sorry for hating you. I am sorry for thinking such ugly, toxic thoughts about you. I’m sorry for all of the awful things I’ve said about you—in private and to others—and I’m sorry for never thinking you were good enough. I’m sorry for comparing you to impossible, unrealistic standards and shaming you for not being able to meet them. I’m sorry for starving you, for feeding you garbage, for trying to force you to change, to be something you were never meant to be. I’m sorry for not recognizing your beauty.
I’m sorry for the times I’ve ignored your needs. I’m sorry for the times that you were trying to tell me that something was wrong with you and I ignored you and pushed you farther than you could go. I’m sorry for forcing you to wash one more sink of dishes or do one more load of laundry when all you needed was to rest. I’m sorry for pushing you to the point of exhaustion. I know that I have caused a lot of your troubles and pain by expecting too much of you. You’ve had a rough couple of years, and I haven’t been sensitive to that change. I keep expecting you to function as though you were completely healthy—you’re not. I know that. And you may never be again. I’m sorry for putting those unrealistic expectations on you. I’m sorry for getting so easily frustrated with you. I know I need to accept that and help you learn to function in this frustrating new normal: seizures and side effects and migraines and exhaustion.
I’m hoping that—since you are still with me, miraculously—the future can be better for us. I hope to learn to listen to you and give you what you need. I hope to take better care of you. I hope to learn to love you just as you are, even though you are not what you used to be. I hope to help you keep faith. I hope to learn patience and practice it on you. I hope to appreciate you and be proud of you. I hope that we can learn to be strong together.
Please, don’t give up on me just yet.
I need you.
I’m so sorry. I’ve treated you like shit for the last 32 years and I’m sorry. It’s a wonder that you’re still with me.
I’m sorry for hating you. I am sorry for thinking such ugly, toxic thoughts about you. I’m sorry for all of the awful things I’ve said about you—in private and to others—and I’m sorry for never thinking you were good enough. I’m sorry for comparing you to impossible, unrealistic standards and shaming you for not being able to meet them. I’m sorry for starving you, for feeding you garbage, for trying to force you to change, to be something you were never meant to be. I’m sorry for not recognizing your beauty.
I’m sorry for the times I’ve ignored your needs. I’m sorry for the times that you were trying to tell me that something was wrong with you and I ignored you and pushed you farther than you could go. I’m sorry for forcing you to wash one more sink of dishes or do one more load of laundry when all you needed was to rest. I’m sorry for pushing you to the point of exhaustion. I know that I have caused a lot of your troubles and pain by expecting too much of you. You’ve had a rough couple of years, and I haven’t been sensitive to that change. I keep expecting you to function as though you were completely healthy—you’re not. I know that. And you may never be again. I’m sorry for putting those unrealistic expectations on you. I’m sorry for getting so easily frustrated with you. I know I need to accept that and help you learn to function in this frustrating new normal: seizures and side effects and migraines and exhaustion.
I’m hoping that—since you are still with me, miraculously—the future can be better for us. I hope to learn to listen to you and give you what you need. I hope to take better care of you. I hope to learn to love you just as you are, even though you are not what you used to be. I hope to help you keep faith. I hope to learn patience and practice it on you. I hope to appreciate you and be proud of you. I hope that we can learn to be strong together.
Please, don’t give up on me just yet.
I need you.
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