Now that I know I can get better--all the way better!--my world is expanding daily with new possibilities for the future, some of which (rollerblading, my first job, driving) I had completely forgotten about. Along with all that comes the wrenchingly joyous process of dismantling my life as I currently know it.
The biggest question is what to do with this blog. Blogging started as a way for me to vent at times when my firends couldn't stand to hear about pain anymore but I needed a listening ear; now, it is one of my favorite hobbies and soemthing I look forward to each day. I will no longer be able to call the blog "A Normal Teenage Life, with Pain", because I will be pain-free; "Normal Teenage Life" doesn't quite sound right either, because the courage, strength, and patience I have gained over this past year are far from normal. I'm thinking of a title along the lines of "Life after Pain". Life will continue; and I will be free; but I suspect that past, present, and future pain may remain at the forefront of my thoughts for a long time to come.
So. If I can figure out how to retitle this blog, I will do that after treatment; otherwise, see you on my new blog (again, after treatment): "Life after Pain"!
Sunday, November 30, 2008
Wednesday, November 26, 2008
Curable
Yesterday I saw Dr. Sherry at Children's Hospital of Philadelphia...I can be cured. I am curable. Through an intensive physical therapy program (inpatient, six hours a day, seven days a week) I will definitely regain function and have a ninety percent chance to wind up pain-free. I will be able to run and jump and dance and play and everything I ever wanted...if I really get completely well I'll feel better than I've felt since sixth grade. This is amazing...and incredible...and everything I ever dreamed of. I can hardly wait. Thank You, God, for the miracles You have seen fit to work for me. Thank You.
Monday, November 24, 2008
Continuing my List...
7. Avoiding Triggers: This one is simplest to implement and hardest to remember! It's a lot easier to try to ameliorate pain once I'm in it than avoid it in the first place, but avoidance really is key. This is why I no longer socialize in the evenings (to my sorrow) or attend noisy school events.
8. Hugs: Yes, a big, warm hug from someone I love genuinely can make me feel better.
9. Writing: Writing about the pain certainly does not let me focus off it, but it does diffuse anxiety and tightly wound-up nerves, which in turn decreases the pain a bit.
8. Hugs: Yes, a big, warm hug from someone I love genuinely can make me feel better.
9. Writing: Writing about the pain certainly does not let me focus off it, but it does diffuse anxiety and tightly wound-up nerves, which in turn decreases the pain a bit.
Sunday, November 23, 2008
"This miracle God gave to me / Gives me strength when I'm weak..."
[Title from "In my Daughter's Eyes"; don't know the artist]
I love my rollator...it actually keeps me feeling good! I find the scale of one to ten inapplicable and useless, but if I used it I'd rank myself at a three or four right now...consistently. My dad took me shopping for a new coat today; I used a wheelchair around the store and managed to keep myself feeling good. Hey, "Dave", "John", and anyone else who carries me: I'm not falling down anymore! (At least until I get worse again, but we won't think about that.) You may never have to carry me again! HOORAY!
In other news, I am enjoying being home and relaxing. I miss all my school firends terribly, and want to be back with them. I will, however, be meeting up with one friend (haven't seen her for three months) on Wednesday, and another (haven't seen her for seventeen months) on Friday, so it's all good and I'm very excited.
I forgot what it was like to feel this good...thank God for rollators.
While I'm in this good mood, I am starting a project that will hopefully carry me through the hard times as well. I am starting a list of things that help my pain; by the end of the year (12/31/08) I hope to have 100 coping strategies listed here.
1. Lying Down: listening to music, reading, or sleeping, particularly if my feet are on top of the blankets, not under them.
2. Taking off my Shoes: This is the simplest one, and the one I forget most often. Wearing shoes actively hurts my feet; taking them off removes that particular trigger.
3. Theater: Since July, I have not felt better than I did while I was in the play.
4. Having Fun with Friends and Not Talking about Pain: Distraction always helps; fun distractions are even better.
5. Laughing Really Hard: Laughter releases endorphins, which always decrease pain. On occasion, I've managed to laugh myself out of pain.
6. Self-Hypnosis: This one is complicated. As I go deep into myself, my pain gets worse before it gets better; it has to be low enough to begin with that I can stand for it to get worse, then relax enough to make it better. So this one only helps up to a point. Since it definitely helps somewhat sometimes, however, I am including it here.
I love my rollator...it actually keeps me feeling good! I find the scale of one to ten inapplicable and useless, but if I used it I'd rank myself at a three or four right now...consistently. My dad took me shopping for a new coat today; I used a wheelchair around the store and managed to keep myself feeling good. Hey, "Dave", "John", and anyone else who carries me: I'm not falling down anymore! (At least until I get worse again, but we won't think about that.) You may never have to carry me again! HOORAY!
In other news, I am enjoying being home and relaxing. I miss all my school firends terribly, and want to be back with them. I will, however, be meeting up with one friend (haven't seen her for three months) on Wednesday, and another (haven't seen her for seventeen months) on Friday, so it's all good and I'm very excited.
I forgot what it was like to feel this good...thank God for rollators.
While I'm in this good mood, I am starting a project that will hopefully carry me through the hard times as well. I am starting a list of things that help my pain; by the end of the year (12/31/08) I hope to have 100 coping strategies listed here.
1. Lying Down: listening to music, reading, or sleeping, particularly if my feet are on top of the blankets, not under them.
2. Taking off my Shoes: This is the simplest one, and the one I forget most often. Wearing shoes actively hurts my feet; taking them off removes that particular trigger.
3. Theater: Since July, I have not felt better than I did while I was in the play.
4. Having Fun with Friends and Not Talking about Pain: Distraction always helps; fun distractions are even better.
5. Laughing Really Hard: Laughter releases endorphins, which always decrease pain. On occasion, I've managed to laugh myself out of pain.
6. Self-Hypnosis: This one is complicated. As I go deep into myself, my pain gets worse before it gets better; it has to be low enough to begin with that I can stand for it to get worse, then relax enough to make it better. So this one only helps up to a point. Since it definitely helps somewhat sometimes, however, I am including it here.
Saturday, November 22, 2008
Loving my Rollator!
I just started using my Dad's rollator (from when his arthritis was bothering him years ago...it stopped bothering him, and he's now one of the only two able-bodied people in our home...now it's my rollator!) in place of my crutches, and I love, love, love, love, love, love, LOVE it! Think I love it? I DO!
A rollator is like a walker, with three "corners" instead of four, big wheels, and hand brakes. It can collapse partially to fit through small doorways, and is significantly more supportive than crutches. I can't do stairs with it, but since I usually prefer to crawl when forced to use stairs anyway, that's not really an issue.
I LOVE my rollator; if I use it all the time, I can actually feel halfway decent, which is GOOD! I may never collapse again, meaning "John" and "Dave" would never have to carry me again, which I'm sure they'd like and I'd like too. This is AMAZING; I never imagined feeling this good again before treatment. I LOVE, LOVE, LOVE my rollator! Yay, FREEDOM!!!!! *metaphorically running around in crazy circles right about now.*
(Follow the link below to see a picture of a rollator, if you're interested.)
http://www.ionmeds.com/Winnie%20go%20light%20aluminum%20Rollator.htm
A rollator is like a walker, with three "corners" instead of four, big wheels, and hand brakes. It can collapse partially to fit through small doorways, and is significantly more supportive than crutches. I can't do stairs with it, but since I usually prefer to crawl when forced to use stairs anyway, that's not really an issue.
I LOVE my rollator; if I use it all the time, I can actually feel halfway decent, which is GOOD! I may never collapse again, meaning "John" and "Dave" would never have to carry me again, which I'm sure they'd like and I'd like too. This is AMAZING; I never imagined feeling this good again before treatment. I LOVE, LOVE, LOVE my rollator! Yay, FREEDOM!!!!! *metaphorically running around in crazy circles right about now.*
(Follow the link below to see a picture of a rollator, if you're interested.)
http://www.ionmeds.com/Winnie%20go%20light%20aluminum%20Rollator.htm
Friday, November 21, 2008
Home for Thansgiving
The airports and planes actually weren't as hard to manage as I'd been expecting. I was certainly in major pain by the time I made it through security, but I had no one next to me on my first flight and I was able to just stretch my feet out (OK, actually curl up across two seats) and rest, which was nice. My four hour layover in Detroit meant I was sitting for a good long time, so long that I even managed to get up once or twice and walk a long way to find a newsstand to get something to eat. I did have to have my feet down during the second flight, but ended up in a very interesting religious discussion with my seatmate. That conversation distracted me enough that I didn't suffer as much as I would have otherwise, and in fact was feeling much better by the time I got off the plane.
By the way, I really dislike a certain type of airport personnel. I guess I should say I dislike this type of person, but I never encountered more of them at once than I did in the airport yesterday. I'm talking about the kind of person who talks to me more slowly, more gently, more sweetly, more loudly, and closer to my face than they would talk to others, just because I'm disabled. There is nothing wrong with the brain connections that have to do with me understanding speech. I realize my pain stems from a brain connection, but that is the only thing wrong with my brain. I can understand everything everyone says. Always.
In keeping with the original purpose of this blog as how I manage my life...here is a segment on living in a house with stairs.
The steps in my house are narrow and steep and hard to go up and down. I certianly don't want to be doing that more than once or twice a day, at most. So, I get up, get dressed, and put everything I need for the day in one plastic bag and one tote bag. I come downstairs with my bags, and I don't go back up for the rest of the day. How to handle stairs? Avoid them.
By the way, I really dislike a certain type of airport personnel. I guess I should say I dislike this type of person, but I never encountered more of them at once than I did in the airport yesterday. I'm talking about the kind of person who talks to me more slowly, more gently, more sweetly, more loudly, and closer to my face than they would talk to others, just because I'm disabled. There is nothing wrong with the brain connections that have to do with me understanding speech. I realize my pain stems from a brain connection, but that is the only thing wrong with my brain. I can understand everything everyone says. Always.
In keeping with the original purpose of this blog as how I manage my life...here is a segment on living in a house with stairs.
The steps in my house are narrow and steep and hard to go up and down. I certianly don't want to be doing that more than once or twice a day, at most. So, I get up, get dressed, and put everything I need for the day in one plastic bag and one tote bag. I come downstairs with my bags, and I don't go back up for the rest of the day. How to handle stairs? Avoid them.
Thursday, November 20, 2008
Going Home...
I will shortly be on my way home for Thanksgiving, and I just have to say that I hate airports. Airports are almost as bad for me as a school day, and they happen all at once, so they're harder.
How different my experience of going home for break is from other people's. Others can pack, clean, and study the night before they leave, take their final the next day, hang out with friends, and head home--and still have energy to be excited. I packed yesterday, was too exhausted to study properly, and fell asleep triyng not to scream as my pain jumped around; cleaned today, and was too exhausted to focus on my final; and have spent the last hour sitting on my bed desperately trying to regain some energy so I can manage the airport.
Ever wonder why I'm not hanging out with my friends nearly so much anymore? Yeah. This is why.
Happy Thanksgiving, everyone!
How different my experience of going home for break is from other people's. Others can pack, clean, and study the night before they leave, take their final the next day, hang out with friends, and head home--and still have energy to be excited. I packed yesterday, was too exhausted to study properly, and fell asleep triyng not to scream as my pain jumped around; cleaned today, and was too exhausted to focus on my final; and have spent the last hour sitting on my bed desperately trying to regain some energy so I can manage the airport.
Ever wonder why I'm not hanging out with my friends nearly so much anymore? Yeah. This is why.
Happy Thanksgiving, everyone!
Monday, November 17, 2008
Random Meme
This came from someone else's blog; since I'm not really in a creative mood today, I thought I would just blog this.
What I was doing ten years ago (I have a feeling this was meant for somewhat older people, but here goes anyway):
In November 1998 I had just started Kindergarten. My family had moved to Binghamton, New York eight months before, one month after my fifth birthday. My favorite activities at the time wer eplaying with my dolls and my dollhouse. My two-year-old brother liked to come in my room and take my things. I had a very early bedtime, which made it hard for me to fall asleep in the summer when it was still light out. I didn't like being in the basement at night. (Still don't particularly, unless there's something I want to watch on TV.) I enjoyed playing outside.
Five things on my to-do list today:
1. Study for my Algebra final.
2. Study for my Bible final.
3. Call home and talk to my mom.
4. Retrieve my laundry from upstairs (this one might or might not actually happen today).
5. What, I'm supposed to have time left?! It's finals week! Sew a bit, I suppose.
Snacks I Enjoy:
1. Ice cream
2. Chocolate
3. Potato Chips
4. Crackers (Wheat Thins, Triscuits, Saltines...)
5. Cheese
Things I Would Do if I Were a Billionaire:
1. Finance my younger brother's education.
2. Sponsor a child through WorldVision.
3. Create a product line to raise RSD awareness.
4. Travel to Israel.
5, Finance my own education.
Five of my Bad Habits:
1. Picking my fingers
2. Crying too easily
3. Wondering whether or not my friends actually like me
4. Procrastinating when I should be studying (read: right now)
5. Threatening to hit people with my crutches ;)
Five Places I Have Lived:
1. Houston, Texas (born there)
2. Youngstown, Ohio (17 months-4 1/2-ish).
3. Youngstown, Ohio (different house, 4 1/2-ish-5 years)
4. Binghamton, New York (5 years-14 1/2)
5. Greensboro, North Carolina (present)
Five Things I Love to Do:
1. Act
2. Write
3. Sing
4. Sew/Knit
5. Read
Five Things that Bug Me:
1. Judgmental people
2. Neat freaks
3. My bad habits
4. My past
5. My pain
Five "Little Known" Things About Me:
1. I had a pretty horrible elementary school life. As a result, I only fully trust one person (outside my immediate family) in this world, and I'm not even completely sure about him.
2. Plans from "before" (i.e. before pain): I wanted to play basketball for AHA, and someday join the military.
3. My absolute most favorite person in the world ever is my younger brother, "Leo".
4. I do curse, much more often than I should.
5. I once wrote a "porno/romance novel/story of psychiatric illness", but I never finished it. It was just about the most perverted thing I could imagine at the time, and quite fun.
What I was doing ten years ago (I have a feeling this was meant for somewhat older people, but here goes anyway):
In November 1998 I had just started Kindergarten. My family had moved to Binghamton, New York eight months before, one month after my fifth birthday. My favorite activities at the time wer eplaying with my dolls and my dollhouse. My two-year-old brother liked to come in my room and take my things. I had a very early bedtime, which made it hard for me to fall asleep in the summer when it was still light out. I didn't like being in the basement at night. (Still don't particularly, unless there's something I want to watch on TV.) I enjoyed playing outside.
Five things on my to-do list today:
1. Study for my Algebra final.
2. Study for my Bible final.
3. Call home and talk to my mom.
4. Retrieve my laundry from upstairs (this one might or might not actually happen today).
5. What, I'm supposed to have time left?! It's finals week! Sew a bit, I suppose.
Snacks I Enjoy:
1. Ice cream
2. Chocolate
3. Potato Chips
4. Crackers (Wheat Thins, Triscuits, Saltines...)
5. Cheese
Things I Would Do if I Were a Billionaire:
1. Finance my younger brother's education.
2. Sponsor a child through WorldVision.
3. Create a product line to raise RSD awareness.
4. Travel to Israel.
5, Finance my own education.
Five of my Bad Habits:
1. Picking my fingers
2. Crying too easily
3. Wondering whether or not my friends actually like me
4. Procrastinating when I should be studying (read: right now)
5. Threatening to hit people with my crutches ;)
Five Places I Have Lived:
1. Houston, Texas (born there)
2. Youngstown, Ohio (17 months-4 1/2-ish).
3. Youngstown, Ohio (different house, 4 1/2-ish-5 years)
4. Binghamton, New York (5 years-14 1/2)
5. Greensboro, North Carolina (present)
Five Things I Love to Do:
1. Act
2. Write
3. Sing
4. Sew/Knit
5. Read
Five Things that Bug Me:
1. Judgmental people
2. Neat freaks
3. My bad habits
4. My past
5. My pain
Five "Little Known" Things About Me:
1. I had a pretty horrible elementary school life. As a result, I only fully trust one person (outside my immediate family) in this world, and I'm not even completely sure about him.
2. Plans from "before" (i.e. before pain): I wanted to play basketball for AHA, and someday join the military.
3. My absolute most favorite person in the world ever is my younger brother, "Leo".
4. I do curse, much more often than I should.
5. I once wrote a "porno/romance novel/story of psychiatric illness", but I never finished it. It was just about the most perverted thing I could imagine at the time, and quite fun.
Sunday, November 16, 2008
Keeping Busy
(Please note: I gave this entry the most neutral title I could find. Depending on what kind of person you are, it could also be titled "Productivity", "Dawdling", "Staying Sane", or "Going Insane", just to name a few.)
Situation: For an entire weekend, almost every step you take causes an intense, flesh-eating burning sensation. This is actually better than the last school week has been, but it is by no means good enough to convince you to leave your room for anything unnecessary. By Saturday afternoon, you are bored, claustrophobic, and irritable. What do you do?
If you spend time feeling sorry for yourself, leave this blog.
If you find a creative solution, read on.
I am majorly good at creative solutions. Mine was in two parts:
1. Spend four (Four!) hours on Saturday rereading the entire 220 page Jewish History textbook in preparation for Monday's final. Do not just skim it over; reread the entire thing thoroughly, such that you have a firm grasp of the material and understand how it all connects. Spend three (Three!) hours on Sunday rereading all relevant parts of the European History textbook. Again, read thoroughly and slowly, such that you understand the material and a vague historical overview. By this time your brain will be dead; start praying that you will pass your finals.
2. Spend three to four (can't exclamation point this, because I don't know exactly how long it actually took) making...a tote bag. This is not as random as it sounds, I promise. I have been wanting a tote bag that I can hang from the handle of a crutch for a long time. All the ones in stores are expensive, and who wants to sanction a free market (read: slave labor) economy anyway? I am, however, going home for Thanksgiving in a week; I need something to use for my carry-on in the airport.
Below is a picture of the finished tote bag. All seams are double-sewn. (That may or may not be the correct, technical term, but I bet you can figure out what it means.) The strips that comprise the handle are sewn together with a row of running stitch, then a row of whip-stitch, and finally another row of running stitch; each end of the finished handle is attached to the tote the same way. The bag close with a row of four small buttons. (What can I say? I accidentally bought tiny buttons.) Inside is a "secret" pocket. The finished tote bag:
Situation: For an entire weekend, almost every step you take causes an intense, flesh-eating burning sensation. This is actually better than the last school week has been, but it is by no means good enough to convince you to leave your room for anything unnecessary. By Saturday afternoon, you are bored, claustrophobic, and irritable. What do you do?
If you spend time feeling sorry for yourself, leave this blog.
If you find a creative solution, read on.
I am majorly good at creative solutions. Mine was in two parts:
1. Spend four (Four!) hours on Saturday rereading the entire 220 page Jewish History textbook in preparation for Monday's final. Do not just skim it over; reread the entire thing thoroughly, such that you have a firm grasp of the material and understand how it all connects. Spend three (Three!) hours on Sunday rereading all relevant parts of the European History textbook. Again, read thoroughly and slowly, such that you understand the material and a vague historical overview. By this time your brain will be dead; start praying that you will pass your finals.
2. Spend three to four (can't exclamation point this, because I don't know exactly how long it actually took) making...a tote bag. This is not as random as it sounds, I promise. I have been wanting a tote bag that I can hang from the handle of a crutch for a long time. All the ones in stores are expensive, and who wants to sanction a free market (read: slave labor) economy anyway? I am, however, going home for Thanksgiving in a week; I need something to use for my carry-on in the airport.
Below is a picture of the finished tote bag. All seams are double-sewn. (That may or may not be the correct, technical term, but I bet you can figure out what it means.) The strips that comprise the handle are sewn together with a row of running stitch, then a row of whip-stitch, and finally another row of running stitch; each end of the finished handle is attached to the tote the same way. The bag close with a row of four small buttons. (What can I say? I accidentally bought tiny buttons.) Inside is a "secret" pocket. The finished tote bag:
Saturday, November 15, 2008
How to Dispel Self-Pity
Self-pity is an absolutely useless emotion. Period. Useless. There is nothing wrong with recognizing that one is in difficult circumstances, and allowing oneself to feel sad and angry at times is necessary and healthy; but wallowing in it never did anyone any good. Here is how to get rid of it, at least what works for me:
1. Identify the emotion: I am almost never able to sit back and declare, "I am feeling sorry for myself." More often, I will find myself crying more easily, feeling more irritable, sleeping more, and randomly getting angry at people. I know that even if I think I have reason to be angry at someone, I am usually actually indulging in self-pity, because I don't get angry easily.
2. Figure out what one is missing: Tonight, I was feeling trapped. I haven't felt good enough to leav emy room for anything fun in days; I'm tired of being trapped here. Spend enough time in any room, no matter how lovely, and you start to feel claustrophobic; and I'm not exactly the neatest person on Earth to begin with, so my room is far from lovely.
3. Experience/Replace what one is missing: I did in fact leave my room for about five minutes and take a very short walk, but it wasn't enough. Now the question came: What to do to make myself happier in current circumstances? You see, fighting a situation only makes it worse. I needed to accept and make the most of being stuck in my room.
I really enjoy sewing, so that's what I decided to do. I would make something. And, to make it even more fun, I would watch the 1939 version of "The Little Princess" with Shirley Temple (I found it in fourteen clips on Youtube an dsaved them all) while I did it.
4. Schedule the chosen activity: I find it best to do what will make me happy as soon as possible; the self-pity doesn't tend to go away on its own. I had planned to study for two finals today, but I had already spent the day reading for Jewish History and my brain was pretty much dead anyway. So I quickly finished my book, went on Youtube and found my movie, and started sewing.
5. Keep going with your projec tuntil you feel better: This is most important. It took me at least an hour before I stopped feeling trapped.
Am I still feeling confined? Sure. Do I want to be able to hang out with friends? Of course. Did I want to tonight, and did I miss being able to? You better believe it. But at least now I can fall asleep with a nice memory of something rpoductive, rather than being left with memories of killing time and growing more and more irritable.
1. Identify the emotion: I am almost never able to sit back and declare, "I am feeling sorry for myself." More often, I will find myself crying more easily, feeling more irritable, sleeping more, and randomly getting angry at people. I know that even if I think I have reason to be angry at someone, I am usually actually indulging in self-pity, because I don't get angry easily.
2. Figure out what one is missing: Tonight, I was feeling trapped. I haven't felt good enough to leav emy room for anything fun in days; I'm tired of being trapped here. Spend enough time in any room, no matter how lovely, and you start to feel claustrophobic; and I'm not exactly the neatest person on Earth to begin with, so my room is far from lovely.
3. Experience/Replace what one is missing: I did in fact leave my room for about five minutes and take a very short walk, but it wasn't enough. Now the question came: What to do to make myself happier in current circumstances? You see, fighting a situation only makes it worse. I needed to accept and make the most of being stuck in my room.
I really enjoy sewing, so that's what I decided to do. I would make something. And, to make it even more fun, I would watch the 1939 version of "The Little Princess" with Shirley Temple (I found it in fourteen clips on Youtube an dsaved them all) while I did it.
4. Schedule the chosen activity: I find it best to do what will make me happy as soon as possible; the self-pity doesn't tend to go away on its own. I had planned to study for two finals today, but I had already spent the day reading for Jewish History and my brain was pretty much dead anyway. So I quickly finished my book, went on Youtube and found my movie, and started sewing.
5. Keep going with your projec tuntil you feel better: This is most important. It took me at least an hour before I stopped feeling trapped.
Am I still feeling confined? Sure. Do I want to be able to hang out with friends? Of course. Did I want to tonight, and did I miss being able to? You better believe it. But at least now I can fall asleep with a nice memory of something rpoductive, rather than being left with memories of killing time and growing more and more irritable.
Friday, November 14, 2008
Aaaaack.
Aaaack. Finals start Monday. Aaaack. I haven't been able to study because I felt too icky this week. Aaaaack. I'm not prepared. Aaaack. Aaaack. Aaaaack.
And having my feet burn indefinitely isn't helping anything, either.
And having my feet burn indefinitely isn't helping anything, either.
Informative Link
Finally, FINALLY, I found a page that lays out all the information on RSD in an accessible, easy-to-read format! Do read it; it's informative. I didn't know all the information on this page. It also answers some of the questions I get asked most frequently.
http://www.awinninglifewithrsd.com/id15.html
http://www.awinninglifewithrsd.com/id15.html
Thursday, November 13, 2008
Trapped by my own Body
I was in so much pain today I literally collapsed: we're not talking just fell; no, I was lying on the ground with my eyes closed. It must have looked pretty dramatic, because "John" thought I was dead or unconscious or something and started yelling for help, at which point I opened my eyes and spoke just enough to let him know I was conscious. I could tell he was pretty scared; sorry about that, "John"!
In that kind of pain, I literally cannot respond to anything. I can process everything going on around me perfectly as normal. I know who is speaking to me, what they are saying, and how I am supposed to respond; my sense of humor has not changed and I laugh (on the inside) just as easily; I see and remember everything I normally would. But I do not have the energy to respond to people. I cannot talk or smile or even look at people without tremendous effort. I am pretty much just stuck, trapped inside a body that cannot move and will not respond to the world.
Furthermore, I cannot trust any of the messages I get from my body in that state. I cannot know whether I am hungry or thirsty, cold or hot, in or out of pain; about the only thing I can be sure of is whether or not I have to go to the bathroom, and responding to that one requires walking down the hall, which I cannot do when I feel like that.
I understand that this afternoon was scary for my friends. But picture how much scarier it must have been for me.
In future, for those of you who want to reach me through that kind of pain should I end up there again (I am certainly not insisting or even encouraging you to go out of your way to do so, but I could tell people were trying today and really wanted to reach out to me), here's how. (Again, this is for the kind of pain where I can't even move my eyes to look at you.)
GENTLY, very GENTLY, touch me and say something. Move into my current line of vision so I can see you. Hugs are always welcome, but a lot of people talking/surrounding me at once is overwhelming when I'm feeling like that.
In that kind of pain, I literally cannot respond to anything. I can process everything going on around me perfectly as normal. I know who is speaking to me, what they are saying, and how I am supposed to respond; my sense of humor has not changed and I laugh (on the inside) just as easily; I see and remember everything I normally would. But I do not have the energy to respond to people. I cannot talk or smile or even look at people without tremendous effort. I am pretty much just stuck, trapped inside a body that cannot move and will not respond to the world.
Furthermore, I cannot trust any of the messages I get from my body in that state. I cannot know whether I am hungry or thirsty, cold or hot, in or out of pain; about the only thing I can be sure of is whether or not I have to go to the bathroom, and responding to that one requires walking down the hall, which I cannot do when I feel like that.
I understand that this afternoon was scary for my friends. But picture how much scarier it must have been for me.
In future, for those of you who want to reach me through that kind of pain should I end up there again (I am certainly not insisting or even encouraging you to go out of your way to do so, but I could tell people were trying today and really wanted to reach out to me), here's how. (Again, this is for the kind of pain where I can't even move my eyes to look at you.)
GENTLY, very GENTLY, touch me and say something. Move into my current line of vision so I can see you. Hugs are always welcome, but a lot of people talking/surrounding me at once is overwhelming when I'm feeling like that.
10 Things
Saw this on someone else's blog I was reading (the question, that is; the answers are my own), and thought it was interesting.
What are ten things you've done that most other people probably haven't?
1. Begged my parents for a pair of crutches, then a wheelchair.
2.Force fed myself because I was too tired to eat.
3. Memorized "Battle Hymn of the Republic".
4. Written sonnets, sestinas, free verse, and prose on a fairly regular basis.
5. Done my laundry by crawling around.
6. Driven an hour and a half to see Doctor Number Five, who couldn't help.
7. Set off the metal detector at the airport by touching the sides. (What if you're just really fat?)
8. Been to the Metropolitan Opera in New York City four times: La Boehme (Boheme? Boehm?), Carmen, Marriage of Figaro, Tosca.
9. Learned all of Latin I (a year's worth of high school Latin) in three and a half weeks one summer, then forgotten nearly all of it.
10. Walked around school singing as loudly as I please.
What are ten things you've done that most other people probably haven't?
1. Begged my parents for a pair of crutches, then a wheelchair.
2.Force fed myself because I was too tired to eat.
3. Memorized "Battle Hymn of the Republic".
4. Written sonnets, sestinas, free verse, and prose on a fairly regular basis.
5. Done my laundry by crawling around.
6. Driven an hour and a half to see Doctor Number Five, who couldn't help.
7. Set off the metal detector at the airport by touching the sides. (What if you're just really fat?)
8. Been to the Metropolitan Opera in New York City four times: La Boehme (Boheme? Boehm?), Carmen, Marriage of Figaro, Tosca.
9. Learned all of Latin I (a year's worth of high school Latin) in three and a half weeks one summer, then forgotten nearly all of it.
10. Walked around school singing as loudly as I please.
RSD Videos
One of my biggest "pet peeves" regarding RSD (other than the pain itself) is the fact that no one I love, apart from my mother, can understand what this is. So, in the name of awareness and answering questions, here are links to illustrative Youtube videos. You may notice that the second video says, at the end, "also known as complex regional pain syndrome". CRPS is the more correct term and the one used by the medical community. Yes, it does mean "pain that does not stop, in one area, that we don't understand". I'm sad to say that's an actual diagnosis of an actual syndrome.
http://www.youtube.com/watch?v=S1Qn5rus4Gg
http://www.youtube.com/watch?v=CNX33BOpWBA
http://www.youtube.com/watch?v=iJu4DOPbrT4
These two are a Discovery Health Segment (watch both) about RSD.
http://www.youtube.com/watch?v=7OgAzmgX28w&feature=related
http://www.youtube.com/watch?v=5oNxBe6LiLI&feature=related
This is actually about Ehler Danlos Syndrome, not RSD, but the general message still holds.
http://www.youtube.com/watch?v=4H4MCI55Y9Q
Why the usual treatment strategies don't work for chronic pain:
http://www.youtube.com/watch?v=kmdYt0OAJbs&feature=PlayList&p=5E942714B67E8A62&index=2
These next two are about pain in general.
http://www.youtube.com/watch?v=QIfohCubP88&feature=PlayList&p=5E942714B67E8A62&index=0
http://www.youtube.com/watch?v=qii33KVIl2g&feature=PlayList&p=5E942714B67E8A62&index=1
Enjoy (?) Watch any or all of them, or ignore this coompletely: your choice. Just to reiterate, so I clear up any confusion, RSD and CRPS are the same thing.
http://www.youtube.com/watch?v=S1Qn5rus4Gg
http://www.youtube.com/watch?v=CNX33BOpWBA
http://www.youtube.com/watch?v=iJu4DOPbrT4
These two are a Discovery Health Segment (watch both) about RSD.
http://www.youtube.com/watch?v=7OgAzmgX28w&feature=related
http://www.youtube.com/watch?v=5oNxBe6LiLI&feature=related
This is actually about Ehler Danlos Syndrome, not RSD, but the general message still holds.
http://www.youtube.com/watch?v=4H4MCI55Y9Q
Why the usual treatment strategies don't work for chronic pain:
http://www.youtube.com/watch?v=kmdYt0OAJbs&feature=PlayList&p=5E942714B67E8A62&index=2
These next two are about pain in general.
http://www.youtube.com/watch?v=QIfohCubP88&feature=PlayList&p=5E942714B67E8A62&index=0
http://www.youtube.com/watch?v=qii33KVIl2g&feature=PlayList&p=5E942714B67E8A62&index=1
Enjoy (?) Watch any or all of them, or ignore this coompletely: your choice. Just to reiterate, so I clear up any confusion, RSD and CRPS are the same thing.
Wednesday, November 12, 2008
Torture
I will never, never ever, be able to find words for what I went through today; it was Hell, a firey torture that by definition must remian locked inside forever. This poem doesn't even come close, but it's the best I could do.
Heartbreak
I start off bright-eyed, just like every day;
But this day I am doomed to sob and scream.
The only thing that I can do is pray,
And hope that someday, I wake from this dream.
I watch them sink one more triumphant shot;
Cradled by the hard floor, I am alone.
I feel the fire rising, burning hot;
It’s not enough to shiver. I must moan.
The little girl in me is knocking hard;
She wants to be let loose to run and shout.
I feel her bang her head against the guard;
Believe me, if I could I’d let her out!
“Mother!” I scream, as I succumb to pain;
“Hurts!” is my cry as I seek out God’s name.
Heartbreak
I start off bright-eyed, just like every day;
But this day I am doomed to sob and scream.
The only thing that I can do is pray,
And hope that someday, I wake from this dream.
I watch them sink one more triumphant shot;
Cradled by the hard floor, I am alone.
I feel the fire rising, burning hot;
It’s not enough to shiver. I must moan.
The little girl in me is knocking hard;
She wants to be let loose to run and shout.
I feel her bang her head against the guard;
Believe me, if I could I’d let her out!
“Mother!” I scream, as I succumb to pain;
“Hurts!” is my cry as I seek out God’s name.
Sign my Petition
To ensure that it does not get buried, I plan on posting the link to my petition once a month. Here is the November reminder:
http://www.PetitionOnline.com/a1s9d4f6/petition.html
Please sign! It takes two minutes at most. I am hoping to get 50,000 signatures (I'm well aware that there are only 7 right now), at which point I will send it to the US Surgeon General.
http://www.PetitionOnline.com/a1s9d4f6/petition.html
Please sign! It takes two minutes at most. I am hoping to get 50,000 signatures (I'm well aware that there are only 7 right now), at which point I will send it to the US Surgeon General.
Tuesday, November 11, 2008
Hurts!
I hurt so much tonight...but in a weird way, I'm completely dissociated from it. My first clue that I was hurting enough to take notice of was when I slumped involuntarily from kneeling to sitting while watching a basketball game.
Speaking of which, no more watching basketball games. I'm upset because I have both male and female friends who play, and I had promised myself that I would see one girls' game and one boys' game. Today was the girls' game; I was really hoping to be able to watch the boys as well.
Why am I so frightened of this pain? OK. I spent large portions of the game curled up on the floor. When I got on the elevator after the game, I actually screamed. Walking out, I fell to my knees, and couldn't even sit because my body wouldn't move. People carried me back; at one point my hands slipped and I stopped holding on. I couldn't even eat dinner because the taste would have overpowered me. I forgot what I was doing while washing my hands in the bathroom. Oh, and at one point tonight, the spaces in between my toes were hurting. Spaces are not supposed to hurt; that's kind of why they're spaces.
Speaking of which, no more watching basketball games. I'm upset because I have both male and female friends who play, and I had promised myself that I would see one girls' game and one boys' game. Today was the girls' game; I was really hoping to be able to watch the boys as well.
Why am I so frightened of this pain? OK. I spent large portions of the game curled up on the floor. When I got on the elevator after the game, I actually screamed. Walking out, I fell to my knees, and couldn't even sit because my body wouldn't move. People carried me back; at one point my hands slipped and I stopped holding on. I couldn't even eat dinner because the taste would have overpowered me. I forgot what I was doing while washing my hands in the bathroom. Oh, and at one point tonight, the spaces in between my toes were hurting. Spaces are not supposed to hurt; that's kind of why they're spaces.
Monday, November 10, 2008
"I have read a fiery gospel writ in burnished rows of steel..."
(First off, how does one spell "fiery"? F-I-E-R-Y? F-I-R-E-Y? I think the first way is correct, but it should be the second way.)
I thought this title appropriate for sliding back into pain. I had a really great weekend physically, adn was able to visibly remind everyone why they are friends with me in the first place. My infectious joy at living came back; I felt good enough to crunch through leaf piles and shower standing up; and I had this boundless energy that needed to be expressed through (loud) song. In short, I became the person I was before pain.
But now I'm sliding back into it. It's not bad pain, yet, but I always forget the sensation when it goes away, and then I have to get used to it and learn to process/ignore it all over again. Three days makes a difference and I've grown unaccustomed to the endless burning...today was just a constant, "OwWwWw..."
Also, today was the anniversary of Kristallnacht, otherwise known as the November Pogrom, usually considered the official start of the Holocaust. We had a nic ememorial assembly (better than last year's) as a school. We listened to a dramatic reading describing the night, and I broke down crying at the section about an angry mob attacking a hospital for "crippled children".
You see, I am a "crippled child". By the Nazi standards, I am a "useless eater"; that's what they would have called me and then I woul dhave been dead. Sixty percent of my family would have been dead as soon as we arrived at the camps, if not before; three fifths of us would have stood no chance of survival.
Am I a "useless eater"? What makes a person useless?
I thought this title appropriate for sliding back into pain. I had a really great weekend physically, adn was able to visibly remind everyone why they are friends with me in the first place. My infectious joy at living came back; I felt good enough to crunch through leaf piles and shower standing up; and I had this boundless energy that needed to be expressed through (loud) song. In short, I became the person I was before pain.
But now I'm sliding back into it. It's not bad pain, yet, but I always forget the sensation when it goes away, and then I have to get used to it and learn to process/ignore it all over again. Three days makes a difference and I've grown unaccustomed to the endless burning...today was just a constant, "OwWwWw..."
Also, today was the anniversary of Kristallnacht, otherwise known as the November Pogrom, usually considered the official start of the Holocaust. We had a nic ememorial assembly (better than last year's) as a school. We listened to a dramatic reading describing the night, and I broke down crying at the section about an angry mob attacking a hospital for "crippled children".
You see, I am a "crippled child". By the Nazi standards, I am a "useless eater"; that's what they would have called me and then I woul dhave been dead. Sixty percent of my family would have been dead as soon as we arrived at the camps, if not before; three fifths of us would have stood no chance of survival.
Am I a "useless eater"? What makes a person useless?
Sunday, November 9, 2008
Closing Night
Tonight's performance was not as good as last night's. There were more mistakes, some of which were definitely noticeable to the audience. In order:
"Dani" and "Stuart" went to their places too soon. This was partly my fault; we weren't sure whether the lights were down or not, I didn't want them to be late (that happened at the dress rehearsal) and I told them to go--while the house lights were still partially up.
I was tense when I came on, both because of the previous screw-up and because it was the last night, as well as because the lighting was different and I could actually see the whole house. I didn't screw anything up, but my monologue wasn't as good.
"Dani" and "BJ" came out too early, which meant they had to come on too early, which meant they had to surpise "Lisa" by banging on the cube before she had a chance to sit down. She covered it, thank God...but I be tit looked awkward.
I came up the step too early, again.
"Muggy" dropped her line, "Everybody fails math," but Stuart still said his, "...and for your information, I got a B+ in trig." I am sure the audience was wondering how that connected too anything.
All that being said, I had a whole lot of fun tonight (I think I just hate opening night) and I'm very sorry that it's over. There had better be another play I can be in, soon!
"Dani" and "Stuart" went to their places too soon. This was partly my fault; we weren't sure whether the lights were down or not, I didn't want them to be late (that happened at the dress rehearsal) and I told them to go--while the house lights were still partially up.
I was tense when I came on, both because of the previous screw-up and because it was the last night, as well as because the lighting was different and I could actually see the whole house. I didn't screw anything up, but my monologue wasn't as good.
"Dani" and "BJ" came out too early, which meant they had to come on too early, which meant they had to surpise "Lisa" by banging on the cube before she had a chance to sit down. She covered it, thank God...but I be tit looked awkward.
I came up the step too early, again.
"Muggy" dropped her line, "Everybody fails math," but Stuart still said his, "...and for your information, I got a B+ in trig." I am sure the audience was wondering how that connected too anything.
All that being said, I had a whole lot of fun tonight (I think I just hate opening night) and I'm very sorry that it's over. There had better be another play I can be in, soon!
Opening Night
I really think last night went well, as performances go. I was a bit distracted and upset because someone I love wasn't there (turns out he got the time wrong and thought he'd be able to come tonight), but oh well. I heard the audience start whispering in the scene where I broke down crying, and they all turned expectantly towards me whenever I came onstage.
Did I notice mistakes? Sure. "Dani" (I am using names of characters for this blog entry) missed a couple lines of her first monologue, and relied too heavily on the phrase "funniest thing you ever saw" to hang things together, when it was only supposed to be there once. She also had a line, "Why don't you go back? Eat a pizza for us!" That she just dropped. She and "Stuart" screwed up their hugging scene. "Muggy" spoke much too fast. I came up a step too early. Are these mistakes the audience noticed? No, of course not. (Except fo rthe stair, which was still probably not noticed.) Hence they do not matter. People hav ebeen complimenting me all night and this morning.
Now...all that being said, I think I honestly prefer rehearsing to performing. I act because I love what it does to me inside; it's for me, not for anybody else. Audiences throw me. However, performances are worth it because rehearsals are so much fun.
One more show tonight!
Did I notice mistakes? Sure. "Dani" (I am using names of characters for this blog entry) missed a couple lines of her first monologue, and relied too heavily on the phrase "funniest thing you ever saw" to hang things together, when it was only supposed to be there once. She also had a line, "Why don't you go back? Eat a pizza for us!" That she just dropped. She and "Stuart" screwed up their hugging scene. "Muggy" spoke much too fast. I came up a step too early. Are these mistakes the audience noticed? No, of course not. (Except fo rthe stair, which was still probably not noticed.) Hence they do not matter. People hav ebeen complimenting me all night and this morning.
Now...all that being said, I think I honestly prefer rehearsing to performing. I act because I love what it does to me inside; it's for me, not for anybody else. Audiences throw me. However, performances are worth it because rehearsals are so much fun.
One more show tonight!
Thursday, November 6, 2008
"As he died to make men holy, let us die to make men free..."*
What would you die for? There are no answers, just a self-administerable quiz to make you think. I've been thinking about this recently. (Please be aware that not all of the self questions apply to me.) There are five categories, with five questions each. Those of you who, like me, want a scorin gsystem, that makes each question worth five points. Ten bonus points if you can answer the teaser at the end such that it stops driving you crazy.
SELF:
1. Would you kill yourself if you knew you had to be in pain for the rest of your life?
2. Would you kill yourself if you knew the pain would eventually kill you, anyway?
3. Would you kill yourself if the Nazis were coming for you?
4. Would you kill yourself if you accidentally killed someone else?
5. Would you kill yourself if you murdered someone else?
LOVED ONES:
1. Would you take a bullet for a friend? For a family member?
2. Would you throw yourself on a grenade/landmine for a friend? For a family member?
3. If your friend were in constant pain, and it woul dstop if you died, would you kill yourself? What about a family member?
4. Would you be willing to burn to death for a friend? For a family member?
5. Would you be willing to drown for a friend? For a family member?
COUNTRY/NATIONALISM:
1. Would you go to war, knowing you might be killed?
2. Would you undertake a dangerous spy mission only you could complete, knowing you would probably be caught and killed?
3. Would you undertake a (for the sake of argument, completely ethical) necessary suicide mission for your country?
4. Would you die under torture, rather than give up your country's secrets?
5. Would you take a bullet for the president?
RELIGION:
1. Would you let yourself be killed, rather than "admit" your God is false?
2. Would you die rather than break one of the Ten Commandments?
3. Would you die rather than convert to another religion that worshipped the same God? (think Judaism to Christianity, or vice versa)
4. Would you undertake a (onc eagain, for the sake of argument, completely ethical) suicide mission for your religion?
5. Would you go to a warzone or other dangerous situation to minister to those of your religion who were cut off from leaders?
MISCELLANEOUS OTHER CAUSES:
1. Would you die if it meant a cure for cancer?
2. Would you die if it meant there woul dnever be a war again?
3. Would you die if it meant starving children in third world/developing countries would suddenly start thriving?
4. Would you die if it meant an end to the underground slave trade?
5. Would you die if it meant animal testing would stop?
TEASER:
Assume it is right or moral or obligatory to die in order to stop a loved one's suffering. Assume it is right or moral or obligatory to love yourself. Are you obligated to commit suicide in order to stop your own suffering?
I scored a 45. Apparently I am the self-preserving type. Oh, and I can't figure out the teaser, either.
*A note about the title: This title is a line from "Battle Hymn of the Republic". I am aware that the song is a Christian hymn about the Second Coming. It is also the most powerfully beautiful song I have ever encountered, and has approximately fifteen lines that are good for blog titles.
SELF:
1. Would you kill yourself if you knew you had to be in pain for the rest of your life?
2. Would you kill yourself if you knew the pain would eventually kill you, anyway?
3. Would you kill yourself if the Nazis were coming for you?
4. Would you kill yourself if you accidentally killed someone else?
5. Would you kill yourself if you murdered someone else?
LOVED ONES:
1. Would you take a bullet for a friend? For a family member?
2. Would you throw yourself on a grenade/landmine for a friend? For a family member?
3. If your friend were in constant pain, and it woul dstop if you died, would you kill yourself? What about a family member?
4. Would you be willing to burn to death for a friend? For a family member?
5. Would you be willing to drown for a friend? For a family member?
COUNTRY/NATIONALISM:
1. Would you go to war, knowing you might be killed?
2. Would you undertake a dangerous spy mission only you could complete, knowing you would probably be caught and killed?
3. Would you undertake a (for the sake of argument, completely ethical) necessary suicide mission for your country?
4. Would you die under torture, rather than give up your country's secrets?
5. Would you take a bullet for the president?
RELIGION:
1. Would you let yourself be killed, rather than "admit" your God is false?
2. Would you die rather than break one of the Ten Commandments?
3. Would you die rather than convert to another religion that worshipped the same God? (think Judaism to Christianity, or vice versa)
4. Would you undertake a (onc eagain, for the sake of argument, completely ethical) suicide mission for your religion?
5. Would you go to a warzone or other dangerous situation to minister to those of your religion who were cut off from leaders?
MISCELLANEOUS OTHER CAUSES:
1. Would you die if it meant a cure for cancer?
2. Would you die if it meant there woul dnever be a war again?
3. Would you die if it meant starving children in third world/developing countries would suddenly start thriving?
4. Would you die if it meant an end to the underground slave trade?
5. Would you die if it meant animal testing would stop?
TEASER:
Assume it is right or moral or obligatory to die in order to stop a loved one's suffering. Assume it is right or moral or obligatory to love yourself. Are you obligated to commit suicide in order to stop your own suffering?
I scored a 45. Apparently I am the self-preserving type. Oh, and I can't figure out the teaser, either.
*A note about the title: This title is a line from "Battle Hymn of the Republic". I am aware that the song is a Christian hymn about the Second Coming. It is also the most powerfully beautiful song I have ever encountered, and has approximately fifteen lines that are good for blog titles.
Tech Week
Most of my friends are not in theater, cannot understand my panic, and probably don't want to hear about it anyway. Hello, faithful blog readers.
We (the school play, "Pizza with Shrimp on Top") open in three days. Today is our last rehearsal. Saturday night is our first performance. We are not ready.
Scratch that: We the cast are ready. Everybody is automatic on most of their lines. We have almost memorized most of our blocking, and it looks good. We no longer miss cues. We are as ready as we can ever be.
But. One actor keeps staring at the lights, smiling vacantly, and dropping character. Our guitar player forgot to put the clip on his guitar yesterday, and I could not get my music cue. (I sing quite high, as human voices go.) We have no stage left staircase, which means all stage left exits are currently being done stage right, which means we have far too many people using our stage right staircase. I need to remember to keep my chin up. My crying scene is only good enough sometimes. (It's good always, but not good enough.)
Half these things have already gone wrong, which either means they definitely will go wrong again or guarantees that we can stop worrying about them. But the other half...
Oh, tech week, how I love thee!
We (the school play, "Pizza with Shrimp on Top") open in three days. Today is our last rehearsal. Saturday night is our first performance. We are not ready.
Scratch that: We the cast are ready. Everybody is automatic on most of their lines. We have almost memorized most of our blocking, and it looks good. We no longer miss cues. We are as ready as we can ever be.
But. One actor keeps staring at the lights, smiling vacantly, and dropping character. Our guitar player forgot to put the clip on his guitar yesterday, and I could not get my music cue. (I sing quite high, as human voices go.) We have no stage left staircase, which means all stage left exits are currently being done stage right, which means we have far too many people using our stage right staircase. I need to remember to keep my chin up. My crying scene is only good enough sometimes. (It's good always, but not good enough.)
Half these things have already gone wrong, which either means they definitely will go wrong again or guarantees that we can stop worrying about them. But the other half...
Oh, tech week, how I love thee!
Wednesday, November 5, 2008
"The Whole World Lit Up"
"He has sounded forth the trumpet that shall never call retreat;
He is sifting out the hearts of men before His judgment-seat;
Oh, be swift, my soul, to answer Him! be jubilant, my feet!
Our God is marching on!
"Glory! Glory! Hallelujah! Glory! Glory! Hallelujah! Glory! Glory! Hallelujah! His truth is marching on."
(Title from a Blue Fringe song; opening lines from Battle Hymn of the Republic)
Thank You, God...Thank You, God...I feel so much better! I still hurt a lot, can still feel objects four inches away, but that's as far as it goes! I am awake, and focused, and alert, and present, and alive; I have hours of homework tonight and I am fully confident (albeit somewhat delusionally) in my ability to finish it all. I can love, and I can laugh, and I can care that Obama just won the election! Items that only rank four or five on my "to care about" list are actually getting attention! Scratch that; item six is getting attention! Item seven is getting attention! I can care about seven issues all in the same day!
(For the record, the list of things to care about contains, in this order: Theater, Schoolwork, Rest/Health, Friends, Politics, Songs/Singing, Craft Projects. On a really bad day [think Thursday-Monday], I only manage to care about the first three. Yesterday I managed the first five. Today I can make it all the way through the list!)
So. Quotes from songs:
"I can see clearly now; the rain has gone. / I can see all obstacles in my way. / Gone are the dark clouds that had me down. / It's gonna be a bright, bright, sunshiney day!"
He is sifting out the hearts of men before His judgment-seat;
Oh, be swift, my soul, to answer Him! be jubilant, my feet!
Our God is marching on!
"Glory! Glory! Hallelujah! Glory! Glory! Hallelujah! Glory! Glory! Hallelujah! His truth is marching on."
(Title from a Blue Fringe song; opening lines from Battle Hymn of the Republic)
Thank You, God...Thank You, God...I feel so much better! I still hurt a lot, can still feel objects four inches away, but that's as far as it goes! I am awake, and focused, and alert, and present, and alive; I have hours of homework tonight and I am fully confident (albeit somewhat delusionally) in my ability to finish it all. I can love, and I can laugh, and I can care that Obama just won the election! Items that only rank four or five on my "to care about" list are actually getting attention! Scratch that; item six is getting attention! Item seven is getting attention! I can care about seven issues all in the same day!
(For the record, the list of things to care about contains, in this order: Theater, Schoolwork, Rest/Health, Friends, Politics, Songs/Singing, Craft Projects. On a really bad day [think Thursday-Monday], I only manage to care about the first three. Yesterday I managed the first five. Today I can make it all the way through the list!)
So. Quotes from songs:
"I can see clearly now; the rain has gone. / I can see all obstacles in my way. / Gone are the dark clouds that had me down. / It's gonna be a bright, bright, sunshiney day!"
"תודה על כל מה שבראת.
תודה על מה שלי נתת.
על יום של אושר,
תמימות ויושר,
על יום עשוב שנעלם"
"You gotta stop, and smell the roses. / You gotta count life's many blessings every day. / You're gonna find the way to heaven is a rough and rocky road, / If you don't stop and smell the roses along the way."
"...saw a flash in the sky, and the whole world lit up."
"Sing unto God, sing a new song, oh, sing praises to God, give thanks with all of your heart; sing praises unto the LORD thy God...Sing unto God, sing a new song, oh, sing! Sing unto God, sing a new song, oh, sing! Sing unto God, sing a new song unto God! Sing unto God, sing a new song unto God!"
Thank You, God; I have left the ranks of the living dead and rejoined the ranks of the living! (Of course, I now have massive cleanup to do on relationships, schoolwork, etc.)
Tuesday, November 4, 2008
Breaking the Cycle?
I got in an extra hour of sleep last night, bringing my total amount of sleep from about seven hours to nearly eight hours, and it has made such a difference! I was not in such a "fog" this morning: still very tired but able to function. My pain level was more even throughout the day, which of course meant I felt worse in the morning than usual, but when I crashed it was slightly less awful, for slightly less time. I'm still in a lot of pain most minutes; still exhausted, drained, and sluggish in my thinking; but if I can continue to get extra sleep (doubtful), I may not need to take a day off from school next week. As of now, I am too drained to be properly excited about this, but I feel better, so much better! I can't wait to tell "John".
In other news, it's tech week, so naturally I am busy indeed. I love tech week--so much excitement and panic!--but it means I have two hour rehearsals, then dinner, then I call my mom, then study hall, then I get ready for bed, and then if I'm lucky I have a few minutes to work on a certain someone's Hanukkah surprise. I find I no longer have the energy to care so much about politics; pain has forced me to pick and choose the causes on which I expend emotional energy, and the ones that are right in front of my face come first. So I currently care about theater, schoolwork, and resting, and most other issues escape my notice. If any of my friends have been feeling neglected, I'm sorry.
In other news, it's tech week, so naturally I am busy indeed. I love tech week--so much excitement and panic!--but it means I have two hour rehearsals, then dinner, then I call my mom, then study hall, then I get ready for bed, and then if I'm lucky I have a few minutes to work on a certain someone's Hanukkah surprise. I find I no longer have the energy to care so much about politics; pain has forced me to pick and choose the causes on which I expend emotional energy, and the ones that are right in front of my face come first. So I currently care about theater, schoolwork, and resting, and most other issues escape my notice. If any of my friends have been feeling neglected, I'm sorry.
Monday, November 3, 2008
Downward Spiral
In the hopes that I will be able to start on my homework after venting a little (we have an hour and 28 minutes lef to study hall, and counting down), I will describe my rather annoying daily "pain routine".
I seem to be caught in a downward spiral touched off by trying to take the PSATs with my feet dangling. (Those of you who like to take care of me, you can stop saying "I told you so;" lesson learned.)
Pain is exhausting in and of itself, and seems to linger now far into the night; I believe the quality of my sleep has been compromised. I wake up evrey morning in a fog of exhaustion that makes thinking and even moving difficult. This fog lasts until lunchtime-ish, and to add to the annoyance, it makes it difficult to proces spain properly, so I hav eissues judging where my limits are.
About half an hour after lunch (yay for delayed reaction), I am gradually slammed into an unbelievable amount of pain. Just to recap: my pain BURNS, as if my feet are being immersed in fire. That's a description of normal-bad. The kind I'm describing now feels like my feet are melting, or exploding, or being torn off and burned, or burning with out skin so the fire is directly licking flesh. This pain continues to climb until I come back from school, after which it slowly subsides.
By evening I am exhausted again, and it takes effort to get my work done.
If anybody who has daily contact with me is reading this, it would help tremendously if you stopped asking whether I was OK. I am never OK; if I look not OK, I am negative OK. OK? I absolutely appreciate you're concern, and I am happier than words can say to be loved so much by so many.
One hour and twenty minutes to go...homework time. (?)
I seem to be caught in a downward spiral touched off by trying to take the PSATs with my feet dangling. (Those of you who like to take care of me, you can stop saying "I told you so;" lesson learned.)
Pain is exhausting in and of itself, and seems to linger now far into the night; I believe the quality of my sleep has been compromised. I wake up evrey morning in a fog of exhaustion that makes thinking and even moving difficult. This fog lasts until lunchtime-ish, and to add to the annoyance, it makes it difficult to proces spain properly, so I hav eissues judging where my limits are.
About half an hour after lunch (yay for delayed reaction), I am gradually slammed into an unbelievable amount of pain. Just to recap: my pain BURNS, as if my feet are being immersed in fire. That's a description of normal-bad. The kind I'm describing now feels like my feet are melting, or exploding, or being torn off and burned, or burning with out skin so the fire is directly licking flesh. This pain continues to climb until I come back from school, after which it slowly subsides.
By evening I am exhausted again, and it takes effort to get my work done.
If anybody who has daily contact with me is reading this, it would help tremendously if you stopped asking whether I was OK. I am never OK; if I look not OK, I am negative OK. OK? I absolutely appreciate you're concern, and I am happier than words can say to be loved so much by so many.
One hour and twenty minutes to go...homework time. (?)
Picture from the Sadie Hawkins Dance
Because this is the internet, and it is not and never will be fully safe to post pictures, I have added a black box over my date's face. Otherwise htis photo remains unedited.
Sunday, November 2, 2008
The World that Hurts
I wrote this poem just now; it's meant as a dialogue between a "normal" teen and me. Yes, it was based off an imagined conversation with a specific friend, but most of these interchanges have not actually taken place.
The World That Hurts
“The waving grasses, lush and thick.”
(The needles that slice past my feet.)
“The loud music that makes us dance.”
(The sound waves—HURT!—wash over me.)
“High school basketball: school spirit.”
(Huge booms that cause me pain for days.)
“The gorgeous woods dressed up for fall.”
(It hurts even to think of them.)
“Whatever you want; follow your dreams.”
(Oh, how deeply I wish I could!)
The World That Hurts
“The waving grasses, lush and thick.”
(The needles that slice past my feet.)
“The loud music that makes us dance.”
(The sound waves—HURT!—wash over me.)
“High school basketball: school spirit.”
(Huge booms that cause me pain for days.)
“The gorgeous woods dressed up for fall.”
(It hurts even to think of them.)
“Whatever you want; follow your dreams.”
(Oh, how deeply I wish I could!)
Dignity--A Meaningless Word?
In this post, I want to explore the word "dignity", what it means and how it applies in the life of a disabled teen.
Let me start by saying that nothing, but nothing, is too undignified if it makes my life easier. I don't just mean taking the elevator or using crutches; I mean sitting on the floor of the shower, crawling down the hall and up the stairs to do my laundry, letting people carry me.
If dignity can be equated with self-sufficience, however, then it is more dignified for me to do my laundry crawling than for me to ask someone else to do it. Problems arise when I cannot get down the hall to the bathroom, and someone offers to carry me.
Which is more dignified? Not showering? Refusing their offer and desperately trying to crawl, whimpering all the way? Or saying, "Yes, thank you; that would be so helpful!"?
"It's not fair to the other girls in the house..." So is it fair to me? Forget being fair to the person who (insisted she) carries me; is it fair that I need carrying? Fairness is definitely an obsolete term in my life.
Disabled people need some extra help. Period. If I can't get down the hall to the bathroom to shower before Shabbat, and somebody offers to carry me, I really don't have a whole lot of choice. Sometimes I wish people could be me for just one day, just so they could begin to understand. Just imagine being fifteen and needing help with just about everything: getting around, carrying things, getting food.
I am not as self-sufficient as I'd like to be, and maybe it isn't fair to the people who (offer to) help me, but it sure as heck isn't fair to the person trapped in this body. It sure as heck isn't fair to me.
Let me start by saying that nothing, but nothing, is too undignified if it makes my life easier. I don't just mean taking the elevator or using crutches; I mean sitting on the floor of the shower, crawling down the hall and up the stairs to do my laundry, letting people carry me.
If dignity can be equated with self-sufficience, however, then it is more dignified for me to do my laundry crawling than for me to ask someone else to do it. Problems arise when I cannot get down the hall to the bathroom, and someone offers to carry me.
Which is more dignified? Not showering? Refusing their offer and desperately trying to crawl, whimpering all the way? Or saying, "Yes, thank you; that would be so helpful!"?
"It's not fair to the other girls in the house..." So is it fair to me? Forget being fair to the person who (insisted she) carries me; is it fair that I need carrying? Fairness is definitely an obsolete term in my life.
Disabled people need some extra help. Period. If I can't get down the hall to the bathroom to shower before Shabbat, and somebody offers to carry me, I really don't have a whole lot of choice. Sometimes I wish people could be me for just one day, just so they could begin to understand. Just imagine being fifteen and needing help with just about everything: getting around, carrying things, getting food.
I am not as self-sufficient as I'd like to be, and maybe it isn't fair to the people who (offer to) help me, but it sure as heck isn't fair to the person trapped in this body. It sure as heck isn't fair to me.
Saturday, November 1, 2008
What a night!
OK, so tonight was the Sadie Hawkins dance, and it was quite possibly the most fun I've had in thirteen months.
I went with a boy whom I will call "Will". I spent twenty minutes before the dance getting dressed etc.; one girl did my hair and another did my makeup. We were all taking pictures when "Will" showed up at the door. My fellow said no boy was taking one of her girls to a dance without coming in and getting his picture taken, so we did that, then went to the dance. We hung out for a while, but it was lame, so we went on a hayride. It was still lame, so we sat and talked, then went on another hayride. By the time we came back, our various friends were there and the music was actually halfway decent (I guess they gave up on the country/farm theme).
I managed to dance through four songs. For the fast ones, I toned down the leg motions about ninety percent, and danced on crutches. For the slow ones, "Will"'s forearms became my crutches, and we danced together. In between, I sat and rested and talked to "John".
At one point, I was sitting and resting, and suddenly all the dancing caught up to me. I felt the smile slide off my face as pain surged, and I dropped my head onto "John's" shoulder. He patted me and said, "Stay awake, Sarah."
I looked up and said, "If I were smart at all, I'd go back now."
He understood that what I wanted was confirmation that I wasn't just cheating myself of something, and said, "Go back. Don't cause yourself pain needlessly."
So "Will" and I left together. As we were walking back, I said, "Should we kiss or not?"
He responded, "I don't know."
"Well, let's sit down and talk about it." (We sat.) "If we kissed, would you wake up tomorrow feeling regretful or happy?"
"I don't know. Last time I kissed, I didn't really go to sleep."
"Would you mind kissing me?"
His look softened, and he said, "No."
So we kissed. And then we kissed again. And then we walked back to his house and kissed again. And he says he thinks we can work out in a relationship; it will just take some time.
I'm so glad I waited for my first kiss. Everybody always told me it would be gross no matter what, and I maintained that with the right person, it wouldn't be. I was right. I mean it was wet and sticky, but that was just par tof the experience.
I randomly feel like crying now, but I think I'm just tired. I will NOT start questioning the validity of this relationship; whatever it was was real at the time.
I went with a boy whom I will call "Will". I spent twenty minutes before the dance getting dressed etc.; one girl did my hair and another did my makeup. We were all taking pictures when "Will" showed up at the door. My fellow said no boy was taking one of her girls to a dance without coming in and getting his picture taken, so we did that, then went to the dance. We hung out for a while, but it was lame, so we went on a hayride. It was still lame, so we sat and talked, then went on another hayride. By the time we came back, our various friends were there and the music was actually halfway decent (I guess they gave up on the country/farm theme).
I managed to dance through four songs. For the fast ones, I toned down the leg motions about ninety percent, and danced on crutches. For the slow ones, "Will"'s forearms became my crutches, and we danced together. In between, I sat and rested and talked to "John".
At one point, I was sitting and resting, and suddenly all the dancing caught up to me. I felt the smile slide off my face as pain surged, and I dropped my head onto "John's" shoulder. He patted me and said, "Stay awake, Sarah."
I looked up and said, "If I were smart at all, I'd go back now."
He understood that what I wanted was confirmation that I wasn't just cheating myself of something, and said, "Go back. Don't cause yourself pain needlessly."
So "Will" and I left together. As we were walking back, I said, "Should we kiss or not?"
He responded, "I don't know."
"Well, let's sit down and talk about it." (We sat.) "If we kissed, would you wake up tomorrow feeling regretful or happy?"
"I don't know. Last time I kissed, I didn't really go to sleep."
"Would you mind kissing me?"
His look softened, and he said, "No."
So we kissed. And then we kissed again. And then we walked back to his house and kissed again. And he says he thinks we can work out in a relationship; it will just take some time.
I'm so glad I waited for my first kiss. Everybody always told me it would be gross no matter what, and I maintained that with the right person, it wouldn't be. I was right. I mean it was wet and sticky, but that was just par tof the experience.
I randomly feel like crying now, but I think I'm just tired. I will NOT start questioning the validity of this relationship; whatever it was was real at the time.
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