Technically speaking, it's almost one in the morning and I have to be up at six to go to the hospital for the first of day in a stay which will be somewhere in the two- to four-day range. And for the surgery itself. Mustn't forget that. But I got to thinking about this blog and how I really haven't been updating it like I should be (two back-story entries down, something like eleven to go…and no mention yet of my mindset with the procedure itself imminent) and my ability to write post-surgery can be described best by the word 'questionable.' As a quick side-note, though, I have updated the technical settings of this blog to allow my mother to post updates, which I imagine (I hope) will come throughout the day.
Which is why I'm writing now.
I figure that it doesn't really matter how much sleep I get tonight. After all, they'll be sticking a needle in my arm tomorrow morning (I hate needles) and then it'll be lights out for a few hours. And then I'd assume there will be the traditional post-anesthesia nap sometime in the afternoon. Perhaps some ginger ale to drink, too. Ginger ale after surgery is always a plus.
But…it's tomorrow (well, today, technically…it's after midnight).
My surgery is actually today. Which means that yesterday was the final day of my life when I didn't know what wearing a frame was like, the final day of my life with a crooked and frame-free leg, which, if you think about it, is kind of a bigger deal than it sounds like.
So, Natcher, you're having somewhat major life-changing surgery this morning, about seven hours, in fact. How does it feel?
I don't know. When I woke up yesterday, instead of thinking, "Oh! It's Christmas! Is my stocking in my room or has it been stowed safely downstairs away from the reach of the ever-hungry golden retriever?" I thought, "I'm having surgery tomorrow and I don't know what it will be like." And then, for the first part of the day, going downstairs for a light breakfast and examining the stocking, getting in the car to go to church, sitting in the pew, cramped by several relatively large fellow church-goers, I felt sick, I was so nervous.
As mass continued, though, I did start feeling less sick—it's amazing what Christmas carols and hymns can do. And by the end, when we were leaving, my mother offered to let us light a votive candle. With a prayer for strength and for faith, I lit my candle.
The rest of the day was fairly quiet. I tried to work through some more college applications and am mostly done now (as in, six down with the final application barely started). We opened gifts (I got new scarfs, some money for my Kindle, which should be helpful for the hospital stay, and books, both in English and Latin, which makes me very happy). We tied ribbons on the dogs. We ate dinner. We watched the Muppet Christmas Carol.
Also of note: my family more or less lives on a lake. There's a path which goes all the way around that the city paves in winter. I've made it all the way around on foot something like five or six times (maybe more). Months ago, after the surgery was scheduled but well before the seasons changed and snow arrived, I informed my father we were going to walk all the way around the lake on Christmas Day, seeing as it was my last day walking and all.
So we walked all the way around the lake.
According to my mother repeating the TV weather forecasters said, this year marked the coldest Christmas in Minnesota in something like twenty years. The temperature hovered below a toasty ten degrees or so Fahrenheit. It was cold enough that my mother offered me her warmer, longer jacket to wear and our English Cocker Spaniel, who, if he finds out anybody is going on a walk, will have several heart attacks and a stroke if not taken along, wore a jacket (since he's gained some weight recently, it barely fit). His initial enthusiasm for the walk also seemed to freeze, since less than halfway through he started heading rather decisively for home.
And, yes, it was cold outside. My cheeks, which remained uncovered throughout the walk, were still pink half an hour after coming back inside. The cold easily ate through my jeans, though my feet were protected by a pair of boots. But, really, it was my last chance to go around that lake for the next six months or so. Of course I was making it all the way around.
About the boots, though… The pair I wound up wearing was extremely loose on me. I first put on a pretty tight-fitting pair. Unfortunately, the boot was rubbing up against bone growths on my ankle, which would have made it difficult for me to make it around the lake. So, at the first available bench, my father offered to see if we could switch shoes. As it turned out, the pair I was wearing fit him okay and the pair he was wearing fit me okay and, more importantly, accommodated my ankle.
What I did not account for was a three-mile, hour-plus walk in really loose boots resulting in some fairly substantial blisters on the bottom of my feet (thankfully, really just the right foot, which will be very, very, very non-weight-bearing shortly). Since blisters are apparently cause to cancel surgeries, I'm not supposed to mention this tomorrow morning.
But still. I made it around the lake.
Considering the probable state of my mobility tomorrow, that's something.
Wednesday, December 26, 2012
Friday, December 21, 2012
Almost a Triumphant Return
Well…it's been a while since I last posted (more than two weeks). Which is clearly a bit of a problem. As far as excuses, I don't really have any. An overwhelming amount of schoolwork is the closest I can come, but to be honest, I should have had time. I just had a lot to say, which seemed overwhelming, and I badly wanted to have a long amount of uninterrupted time to just write.
I'm on break now (including today, five whole days which don't involve a surgery). So, time.
First off, I have less than a week to go until 6:30 AM on December 26, when I have to be at Gillette Children's Hospital in St. Paul, Minnesota to begin a two-to-four day stay. The procedure starts at 8:00 AM and will last in the two to two-and-a-half hour range. I will be in the recovery room for about an hour. In other words, by noon I should be comfortably in the hospital room. Part of me wants to look at the upcoming stay as a vacation (I mean, it's a bed outside of home, which is clearly the main component of being on vacation) and most of me just says, "Natcher. You're undergoing a relatively serious surgery. This isn't a vacation."
Regardless of whether my upcoming experience is or is not a vacation, I've come to the conclusion that it is legitimately happening (though I still can't really conceptualize the experience as a whole). This is for two reasons. Reason number one is I am now sworn off of Motrin and Aleve, my two preferred pain medicines, in anticipation of anesthesia. The second reason is this:
My personal system for acknowledging the legitimacy of upcoming dates is that if the day is on or before the expiration dates of the milk cartons at school, it's real. Which is to say, my surgery has been a very real thing for the past week or so. After all, I had the pre-op appointment today and there's a packet of things I should know before surgery sitting on the kitchen table.
Of course, the pre-op was with my pediatrician, not my surgeon. And, of course, the packet of information contains such helpful tidbits as when I can no longer have breast milk or baby formula and not the more helpful bits, such as what pin site cleaning actually feels like and how overly large the sweatpants I'll be in for the next six months will really be and will I actually be able to walk in six months. But still.
This is happening.
There was a time last week where we almost pushed the surgery date back until spring. On Monday (the tenth), I was riding home from school with my father. We hit a patch of ice and started to slide. The car ahead of us was stopping but, because of the ice, we couldn't, and as we were about to hit we turned and the front of my father's car went beneath the bumper of a large green parked truck. We were both thrown forward slightly. I absorbed all the impact (not that much impact, really) through a large bone growth on my right leg which looks like a second kneecap. I still have the bruise.
The front of my father's car looked like this after the incident:
Now, I normally love snow. And ice (ice makes fun sounds when you crack it). But the honest truth of the matter is, a lot of stuff was going on and what if we got into an accident on the way home from the hospital and how would I get into the house and wouldn't it be easier if we just did this in March or April when there is no snow or ice on the ground…
The honest truth of the matter is that there is great legitimacy in those arguments. However, it took me long enough to become convinced that this surgery makes sense for me to undergo. I'm not going to risk convincing myself out of the procedure. I'm aware this experience won't be a pleasant one.
I still think it's necessary.
I'm on break now (including today, five whole days which don't involve a surgery). So, time.
First off, I have less than a week to go until 6:30 AM on December 26, when I have to be at Gillette Children's Hospital in St. Paul, Minnesota to begin a two-to-four day stay. The procedure starts at 8:00 AM and will last in the two to two-and-a-half hour range. I will be in the recovery room for about an hour. In other words, by noon I should be comfortably in the hospital room. Part of me wants to look at the upcoming stay as a vacation (I mean, it's a bed outside of home, which is clearly the main component of being on vacation) and most of me just says, "Natcher. You're undergoing a relatively serious surgery. This isn't a vacation."
Regardless of whether my upcoming experience is or is not a vacation, I've come to the conclusion that it is legitimately happening (though I still can't really conceptualize the experience as a whole). This is for two reasons. Reason number one is I am now sworn off of Motrin and Aleve, my two preferred pain medicines, in anticipation of anesthesia. The second reason is this:
 |
| Note the expiration date (this carton of milk obtained and consumed on Dec. 14, I believe) |
Of course, the pre-op was with my pediatrician, not my surgeon. And, of course, the packet of information contains such helpful tidbits as when I can no longer have breast milk or baby formula and not the more helpful bits, such as what pin site cleaning actually feels like and how overly large the sweatpants I'll be in for the next six months will really be and will I actually be able to walk in six months. But still.
This is happening.
There was a time last week where we almost pushed the surgery date back until spring. On Monday (the tenth), I was riding home from school with my father. We hit a patch of ice and started to slide. The car ahead of us was stopping but, because of the ice, we couldn't, and as we were about to hit we turned and the front of my father's car went beneath the bumper of a large green parked truck. We were both thrown forward slightly. I absorbed all the impact (not that much impact, really) through a large bone growth on my right leg which looks like a second kneecap. I still have the bruise.
The front of my father's car looked like this after the incident:
 |
| Slightly worse than the truck, which literally got off without a scratch |
The honest truth of the matter is that there is great legitimacy in those arguments. However, it took me long enough to become convinced that this surgery makes sense for me to undergo. I'm not going to risk convincing myself out of the procedure. I'm aware this experience won't be a pleasant one.
I still think it's necessary.
Wednesday, December 5, 2012
Frustrations
My hip remains stubbornly unhappy with me despite another helping of Motrin. The joint has been a problem in the past, easily aggravated by motions such as raising my leg or (apparently) being forced into a 90˚ angle a la sitting down or sitting on the floor legs extended or really anything too sudden and apparently the problem has chosen to interfere with my present as well as the aforementioned (and yet-to-be-mentioned, haven't got to that part of the back-story narrative yet) past.
This is, of course, rather irritating.
There is no doubt in my mind that going ahead with the frame is the right thing to do. The potential rewards far outweigh the probable discomfort. I just wish it was a more complete cure. Because, yes, my leg will be straight, but it will do nothing to my one toe which stubbornly clings on top of its neighbor and nothing to the bony outcroppings on my ankle which are ever so fascinating to rub my foot along when I should be trying to go to sleep and nothing about how my fingers aren't normal length (I'm endlessly fascinated by hands that do have normal length fingers) and nothing about how there's a bone growth in my hip which makes any sort of rapid leg motion questionable.
I want to be able to run after this surgery.
Based on where I am at the moment, that won't be happening unless I do something to resolve the hip issues—changing my gait (doable, I walk with a very slight limp as is) or surgery or just trying to ignore the problem (though I've tried that tact before and it didn't work out so well). I always have motivation issues with stairs—they look intimidating and I don't want to walk up them—but today I've been having hip issues with stairs. In track last spring, I had to dramatically decrease the portion of all-team warm-up I did because of the hip, as well as sticking to the most basic shot and disc throws. I wanted to learn the more advanced throws, but the more advanced throws I tried resulted in momentary explosions of hip pain and then a very pronounced hobbling as I moved across the sector to pick up the implement.
This scares me. If I have to majorly adapt how I throw, then what about something like running? What then?
I'm just not sure.
Fixing the hip, from what I understand, involves another major surgery. To put it one way, the take-away phrase from that particular doctor's appointment was "surgical hip dislocation." But the more I think about it, the more it's starting to make sense. From what I understand, the frame process could make the potential hip surgery easier. Not sure what'll happen, but that tidbit is legitimately rather reassuring.
I know that, in many ways, I have it easy. I'm six feet tall and don't need any major limb extensions. My arms and legs are functional. I can walk. I go to a pretty decent school and I have good teachers and a supportive family and live in a nice house and have access to fun things to read and interesting ideas to play with.
And yet—this hip thing is really getting to me. Maybe if I sleep on it things will look better in the morning?
This is, of course, rather irritating.
There is no doubt in my mind that going ahead with the frame is the right thing to do. The potential rewards far outweigh the probable discomfort. I just wish it was a more complete cure. Because, yes, my leg will be straight, but it will do nothing to my one toe which stubbornly clings on top of its neighbor and nothing to the bony outcroppings on my ankle which are ever so fascinating to rub my foot along when I should be trying to go to sleep and nothing about how my fingers aren't normal length (I'm endlessly fascinated by hands that do have normal length fingers) and nothing about how there's a bone growth in my hip which makes any sort of rapid leg motion questionable.
I want to be able to run after this surgery.
Based on where I am at the moment, that won't be happening unless I do something to resolve the hip issues—changing my gait (doable, I walk with a very slight limp as is) or surgery or just trying to ignore the problem (though I've tried that tact before and it didn't work out so well). I always have motivation issues with stairs—they look intimidating and I don't want to walk up them—but today I've been having hip issues with stairs. In track last spring, I had to dramatically decrease the portion of all-team warm-up I did because of the hip, as well as sticking to the most basic shot and disc throws. I wanted to learn the more advanced throws, but the more advanced throws I tried resulted in momentary explosions of hip pain and then a very pronounced hobbling as I moved across the sector to pick up the implement.
This scares me. If I have to majorly adapt how I throw, then what about something like running? What then?
I'm just not sure.
Fixing the hip, from what I understand, involves another major surgery. To put it one way, the take-away phrase from that particular doctor's appointment was "surgical hip dislocation." But the more I think about it, the more it's starting to make sense. From what I understand, the frame process could make the potential hip surgery easier. Not sure what'll happen, but that tidbit is legitimately rather reassuring.
I know that, in many ways, I have it easy. I'm six feet tall and don't need any major limb extensions. My arms and legs are functional. I can walk. I go to a pretty decent school and I have good teachers and a supportive family and live in a nice house and have access to fun things to read and interesting ideas to play with.
And yet—this hip thing is really getting to me. Maybe if I sleep on it things will look better in the morning?
Monday, December 3, 2012
Backstory 2: First Round in the Operating Room
I have spent most of today being irritated with my hip, which has been cheerfully complaining with just about every motion I make, regardless, it seems, of whether or not I've dry-swallowed any Motrin to try and keep the discomfort at bay. Granted, this is a known problem (there's a growth in that joint which has caused trouble in the past), but at this point any pain which is not directly linked with the crooked leg unnerves me just a little bit.
And speaking of the crooked leg—today marks the end of what has become one of the main plotlines for this blog. Yes, the pre-op has been scheduled for December 21st, though, it seems, not with my orthopedic surgeon, just with a pediatric doctor. I've got my fingers crossed for another meeting with the surgeon, though. There is a rather noticeable growth I'd like to ask about removing.
But, long story short, I'm getting closer and closer to the Point of No Return. Yes, in just more than three weeks I will be in the hospital all wonked out on narcotics, adjusting to life with my friend the Taylor Spatial Frame.
As I've said before, this is by far the largest surgery I've ever had.
In some ways, this does feel like the first time I had surgery. Once again, I don't know what to expect, though this time I'm aware of some of the little details, like what anesthesia smells like and what it looks like when you're wheeled into the operating room and it's really less hassle if you just let the doctors inject the anesthesia into you instead of breathing it in. And, just like the first time I had surgery, there is a rather large bump I'd like to have removed.
FIRST ROUND IN THE OPERATING ROOM
In third grade, I had a protrusion (read: bone growth) coming from my rib. During the pre-op, I asked Dr. Abel if he could remove it. Looking back, I really don't remember this growth, other than it was fairly obvious. It was also just beneath the skin. Long story short, Dr. Abel agreed to remove it.
The procedure, if I remember correctly, was to do something with my left wrist and to put a screw in one of my ankles (can't remember which one) for the purpose of trying to get the joints all aligned the way they ought to have been aligned in the first place.
To be honest, my memories of those couple days are isolated to a few snatches of moments, most of which had to do with anesthesia.
I can remember one of the doctor-people, either an anesthesiologist or a resident or an assistant to somebody, letting me smell the scents they'd mix into the anesthesia. I remember this encounter taking place in a small closet-like room. He also told me that the anesthesia would smell like airplane gas. Reflecting on my memories of walking through the hallways of the Richmond International Airport, where, for some reason, the airplane gas smell was rather prevalent, that made sense.
I can't remember going to sleep. I remember trying out the scents and then I was in a bed and I couldn't move and my mother was talking to a nurse (I think) about iPods. The conversation continued and I remained still, very still.
Once I was able to move and communicate, I was moved up to the hospital room where I stayed the night. The patient I shared the room with had the TV blaring all night long. Woozy from anesthesia, I got more sleep than my mother did.
I believe the surgery itself took place on February 2nd. All through that day, I struggled with eating. I sucked on little bits of ice and those didn't irritate my stomach that badly. My father brought up a bag of cheese puffs. Those didn't stay down so well.
The next day was a snow day. I was relieved because I wasn't missing school.
I can't remember the recovery all that well. A wheelchair was involved, which I didn't stay in as long as I was told I'd have to. Instead of going to gym classes, I played Myst on my teacher's computer with another hobbled student. Eventually, I could walk again.
Thinking about it now, I do remember that that time, my wrist was in a hard cast. Perhaps other parts of me were in casts, too. When the cast came off, it smelled strange and felt strange. Vulnerable.
That was the last time I had a cast on. To be honest, I can't say I want another.
And speaking of the crooked leg—today marks the end of what has become one of the main plotlines for this blog. Yes, the pre-op has been scheduled for December 21st, though, it seems, not with my orthopedic surgeon, just with a pediatric doctor. I've got my fingers crossed for another meeting with the surgeon, though. There is a rather noticeable growth I'd like to ask about removing.
But, long story short, I'm getting closer and closer to the Point of No Return. Yes, in just more than three weeks I will be in the hospital all wonked out on narcotics, adjusting to life with my friend the Taylor Spatial Frame.
As I've said before, this is by far the largest surgery I've ever had.
In some ways, this does feel like the first time I had surgery. Once again, I don't know what to expect, though this time I'm aware of some of the little details, like what anesthesia smells like and what it looks like when you're wheeled into the operating room and it's really less hassle if you just let the doctors inject the anesthesia into you instead of breathing it in. And, just like the first time I had surgery, there is a rather large bump I'd like to have removed.
FIRST ROUND IN THE OPERATING ROOM
In third grade, I had a protrusion (read: bone growth) coming from my rib. During the pre-op, I asked Dr. Abel if he could remove it. Looking back, I really don't remember this growth, other than it was fairly obvious. It was also just beneath the skin. Long story short, Dr. Abel agreed to remove it.
The procedure, if I remember correctly, was to do something with my left wrist and to put a screw in one of my ankles (can't remember which one) for the purpose of trying to get the joints all aligned the way they ought to have been aligned in the first place.
To be honest, my memories of those couple days are isolated to a few snatches of moments, most of which had to do with anesthesia.
I can remember one of the doctor-people, either an anesthesiologist or a resident or an assistant to somebody, letting me smell the scents they'd mix into the anesthesia. I remember this encounter taking place in a small closet-like room. He also told me that the anesthesia would smell like airplane gas. Reflecting on my memories of walking through the hallways of the Richmond International Airport, where, for some reason, the airplane gas smell was rather prevalent, that made sense.
I can't remember going to sleep. I remember trying out the scents and then I was in a bed and I couldn't move and my mother was talking to a nurse (I think) about iPods. The conversation continued and I remained still, very still.
Once I was able to move and communicate, I was moved up to the hospital room where I stayed the night. The patient I shared the room with had the TV blaring all night long. Woozy from anesthesia, I got more sleep than my mother did.
I believe the surgery itself took place on February 2nd. All through that day, I struggled with eating. I sucked on little bits of ice and those didn't irritate my stomach that badly. My father brought up a bag of cheese puffs. Those didn't stay down so well.
The next day was a snow day. I was relieved because I wasn't missing school.
I can't remember the recovery all that well. A wheelchair was involved, which I didn't stay in as long as I was told I'd have to. Instead of going to gym classes, I played Myst on my teacher's computer with another hobbled student. Eventually, I could walk again.
Thinking about it now, I do remember that that time, my wrist was in a hard cast. Perhaps other parts of me were in casts, too. When the cast came off, it smelled strange and felt strange. Vulnerable.
That was the last time I had a cast on. To be honest, I can't say I want another.
Saturday, December 1, 2012
Frames on Television
One of the myriad advantages non-school nights have over school nights is the ability to stay up longer (coupled with the lack of work which needs to be done and the knowledge that you can wake up considerably later the next morning, they're wonderful). I don't do anything particularly extreme to take advantage of my Fridays and Saturdays. Ignore homework, watch a couple episodes of television, relax in my big black leather corner chair under a heavy coating of blanket.
Well, last night I watched the local news with my parents (after experiencing the spectacular final half of the 1936 production Dracula's Daughter—gotta love the 1930s). And during the news, they listed some of the stories Nightline would be covering that night.
One story was about a women who endured a controversial series of surgeries to grow 14 inches.
I took that to mean one of two things: 1) hormone modifications or 2) external fixators.
As I think I've mentioned before, external fixators can be used to help badly broken bones heal by holding them in place with the pins. They can also be used to straighten limbs and to lengthen limbs, as I'll be doing (straightening the leg plus gaining a half-inch to even the two legs out).
The story was about a woman, Tiffanie DiDonato, who used external fixators to grow fourteen inches. At age eight, she had her legs extended by four inches and also had frames to lengthen her arms. According to Nightline, four inches is the recommended maximum amount of limb extension to be gained from one round of frames. But at age fifteen, she had another set of frames placed on her legs, extending the legs by a further ten inches. Which is a lot. Then she wrote a memoir, which I'm thinking of reading after my frames are on.
Now, the way Nightline chooses to describe external fixators is "extremely painful, risky and controversial" (without, for some reason I cannot fathom, mentioning the words "external fixator" or "frame" once in the story). This is in the context of limb lengthening, granted, but still. First off, I was unaware of there being any controversy over the frames. My best guess as to why I would be unaware of this supposed controversy is because frames, as medical devices, are really not all that well-known. Furthermore, all of the people they talk to in the program are dwarfs who had limb extensions a long time ago—since DiDonato is 32 now, that means she had her final frame placed 17 years ago, in 1995. Medicine, like all sciences, has made some serious advancements since then. When I was told about the frames, I was told that this was a very low-risk procedure, though it would be notably uncomfortable, the frame would probably be infected at some point, and so on. Which is to say, I question Nightline's conclusions about the riskiness of the procedure. Then again, I'm not having my leg lengthened by all that much, so we'll see. However, my bones will be broken and forced to regrow in the way the surgeons want, so perhaps my situation is vaguely similar to hers? Not as extreme, but shades of similarity.
The second part of the story to comment on is its depiction of the pain associated with the frames. They talk about the pain as being "excruciating," near-indescribable. Anguish, in other words. While watching the story, my mother asked me several times if I was okay, if I wanted to turn it off. Each time I said I was fine. And I was. The first time I ever heard about external fixators, I read that pin cleaning, a necessity considering the high risk of infection, felt like having your leg having a bath in burning kerosene (once again, see the final section of Stephen King's On Writing). This knowledge presented a considerable hurdle for me to get over before electing to undergo this surgery. Clearly, I weighed the benefits and risks and pain and decided to go through with it. Hearing another story about how painful frames are has not changed my mind in the slightest. First off, try as I might, I can never remember the actual feeling of pain. I can remember sights and sounds and the aftertaste of anesthesia, but never pain (though perhaps that's the considerable amount of Tylenol-3 I've taken post-op talking). In short, maybe it'll hurt. But there will be medicine to fight the pain and the comfort in knowing that I won't remember the pain. The other thing is, if I'm scared of the pain…well, I don't want to be that person who risks decades of movement over a short period of pain.
Furthermore, the story talks about one way DiDonato dealt with pain and discomfort: keeping a journal. Every time I've tried to keep a journal in the past, it hasn't worked out so well. After a couple days of really intense journal-writing, I'd abruptly lose motivation for no reason at all. But there's a reason I started this blog.
Also kind of amusing: Nightline remarking that frames have a "lifetime of consequences." Well, yes. Then again, just about every surgery ever has a lifetime of consequences, though those consequences are often not as pronounced. That phrase, "lifetime of consequences," just sounds so negative, doesn't it? Because, you know what, that lifetime of consequences is exactly why I'm doing the surgery. Yes, maybe there will be complications, maybe everything won't go 100% perfectly, maybe (definitely) I'll gain a new set of lifelong scars (though, to be fair, they showed DiDonato's scars and those scars had faded away to a comforting level). But, as I've said before, according to my surgeon, the risks are minimal. And yet I still anticipate experiencing a lifetime of consequences, consequences like being able to run and move and be active and not worry about getting arthritis and needing a knee replacement when I'm thirty or forty and not being constricted to an office chair in fear that I'll beat up my leg and just not being limited. Rising above the myriad rules I have to follow (no running no stressful jumping watch out for wall sits don't step or stand on your leg funny or your ankle's going to twist).
Those are the consequences I anticipate.
I'm not particularly excited about wearing the frames. I've tried conceptualizing what it will feel like but can't. I'm fairly certain it won't be much fun. Then again, this was never about fun. This was never about now. It's about the totality of my life, the totality of the experience I want to get in my time on Earth. It's about rising above my limitations. And maybe, just maybe, getting to run.
Well, last night I watched the local news with my parents (after experiencing the spectacular final half of the 1936 production Dracula's Daughter—gotta love the 1930s). And during the news, they listed some of the stories Nightline would be covering that night.
One story was about a women who endured a controversial series of surgeries to grow 14 inches.
I took that to mean one of two things: 1) hormone modifications or 2) external fixators.
As I think I've mentioned before, external fixators can be used to help badly broken bones heal by holding them in place with the pins. They can also be used to straighten limbs and to lengthen limbs, as I'll be doing (straightening the leg plus gaining a half-inch to even the two legs out).
The story was about a woman, Tiffanie DiDonato, who used external fixators to grow fourteen inches. At age eight, she had her legs extended by four inches and also had frames to lengthen her arms. According to Nightline, four inches is the recommended maximum amount of limb extension to be gained from one round of frames. But at age fifteen, she had another set of frames placed on her legs, extending the legs by a further ten inches. Which is a lot. Then she wrote a memoir, which I'm thinking of reading after my frames are on.
Now, the way Nightline chooses to describe external fixators is "extremely painful, risky and controversial" (without, for some reason I cannot fathom, mentioning the words "external fixator" or "frame" once in the story). This is in the context of limb lengthening, granted, but still. First off, I was unaware of there being any controversy over the frames. My best guess as to why I would be unaware of this supposed controversy is because frames, as medical devices, are really not all that well-known. Furthermore, all of the people they talk to in the program are dwarfs who had limb extensions a long time ago—since DiDonato is 32 now, that means she had her final frame placed 17 years ago, in 1995. Medicine, like all sciences, has made some serious advancements since then. When I was told about the frames, I was told that this was a very low-risk procedure, though it would be notably uncomfortable, the frame would probably be infected at some point, and so on. Which is to say, I question Nightline's conclusions about the riskiness of the procedure. Then again, I'm not having my leg lengthened by all that much, so we'll see. However, my bones will be broken and forced to regrow in the way the surgeons want, so perhaps my situation is vaguely similar to hers? Not as extreme, but shades of similarity.
The second part of the story to comment on is its depiction of the pain associated with the frames. They talk about the pain as being "excruciating," near-indescribable. Anguish, in other words. While watching the story, my mother asked me several times if I was okay, if I wanted to turn it off. Each time I said I was fine. And I was. The first time I ever heard about external fixators, I read that pin cleaning, a necessity considering the high risk of infection, felt like having your leg having a bath in burning kerosene (once again, see the final section of Stephen King's On Writing). This knowledge presented a considerable hurdle for me to get over before electing to undergo this surgery. Clearly, I weighed the benefits and risks and pain and decided to go through with it. Hearing another story about how painful frames are has not changed my mind in the slightest. First off, try as I might, I can never remember the actual feeling of pain. I can remember sights and sounds and the aftertaste of anesthesia, but never pain (though perhaps that's the considerable amount of Tylenol-3 I've taken post-op talking). In short, maybe it'll hurt. But there will be medicine to fight the pain and the comfort in knowing that I won't remember the pain. The other thing is, if I'm scared of the pain…well, I don't want to be that person who risks decades of movement over a short period of pain.
Furthermore, the story talks about one way DiDonato dealt with pain and discomfort: keeping a journal. Every time I've tried to keep a journal in the past, it hasn't worked out so well. After a couple days of really intense journal-writing, I'd abruptly lose motivation for no reason at all. But there's a reason I started this blog.
Also kind of amusing: Nightline remarking that frames have a "lifetime of consequences." Well, yes. Then again, just about every surgery ever has a lifetime of consequences, though those consequences are often not as pronounced. That phrase, "lifetime of consequences," just sounds so negative, doesn't it? Because, you know what, that lifetime of consequences is exactly why I'm doing the surgery. Yes, maybe there will be complications, maybe everything won't go 100% perfectly, maybe (definitely) I'll gain a new set of lifelong scars (though, to be fair, they showed DiDonato's scars and those scars had faded away to a comforting level). But, as I've said before, according to my surgeon, the risks are minimal. And yet I still anticipate experiencing a lifetime of consequences, consequences like being able to run and move and be active and not worry about getting arthritis and needing a knee replacement when I'm thirty or forty and not being constricted to an office chair in fear that I'll beat up my leg and just not being limited. Rising above the myriad rules I have to follow (no running no stressful jumping watch out for wall sits don't step or stand on your leg funny or your ankle's going to twist).
Those are the consequences I anticipate.
I'm not particularly excited about wearing the frames. I've tried conceptualizing what it will feel like but can't. I'm fairly certain it won't be much fun. Then again, this was never about fun. This was never about now. It's about the totality of my life, the totality of the experience I want to get in my time on Earth. It's about rising above my limitations. And maybe, just maybe, getting to run.
Thursday, November 29, 2012
Backstory 1: Reconstructed Memories
As of the moment, still no exciting new developments as I continue progressing to my encounter with the Taylor Spatial Frame. I'm still trying to figure out what academic expectations I'll need to fulfill post-op, still trying to figure out just what the problem with my ankle happens to be (the current leading hypothesis: the ankle is stressed because I favor that leg, seeing as the other one is mildly crooked). I remain fairly relaxed about the procedure. I think a lot of this calmness can be traced to my having roughly zero conception of just what, exactly, wearing a Taylor Spatial Frame feels like, what it entails, what it means.
Other than having a straight leg, that is.
For a week or two I've been meaning to start writing down my backstory, my previous history with legs, osteochondromas and surgeries, figuring that it would be helpful for me and perhaps interesting to know given the general purpose of this blog.
Hence, today's inaugural backstory entry.
RECONSTRUCTED MEMORIES
I had my first surgery in the winter of 2004 when I was nine years old, which is to say, these issues with my legs have been prevalent in my life for a while now. Supposedly, when I was very young, I ran around outside all the time. When my family lived in Virginia, we had a wonderful large yard, complete with several freestanding stone sheds and a gorgeous magnolia tree perfect for climbing. I can remember the yard very well.
I cannot, however, remember pending all my time outside. I have a smattering of memories from that time: an isolated incidence of standing on a Minnesota parking lot, free of context, a small dirty-white dog leaping up to bite my uncle's hand, our larger dogs staring into the house from the porch, me lying on the floor with a marker in my hand, creating construction paper books. But not of running.
My parents say that when we visited people's houses I would run around outside and ask to see their gardens. I have manufactured memories of this, probable images informed by these stories but with no grounding in concrete remembered images.
My surgeon in Virginia had his office in a low-lying building called KCRC: the Kluge Children's Rehabilitation Center, ran by the University of Virginia. The waiting room at KCRC was a wonderful thing. They had piles and piles of magazines to peruse, a row of computers to play on, and, most impressive of all, a large room with enormous windows stocked with everything I adored: a plastic climbing-castle, coloring supplies, a table covered in Thomas trains.
I remember climbing in that castle very well, pretending with my brothers that we lived in the medieval ages while for the most part ignoring the other children, sliding down the anachronistic yellow slide emerging from the side of the structure.
I remember my first orthopedic doctor considerably less well. When I was three, my parents noticed a suspicious lump beneath my knee. Fearing the worst, I was taken in to the doctor's and diagnosed with multiple osteochondromas, a disease I inherited from my mother (the immediate blame, as with many immediate blames, went to my father though eventual testing revealed my mother to be the culprit in passing down my condition). In short, I've been meeting with doctors about the condition for a while now.
The first doctor, if my memory serves, was an old man with white hair. As my mother has remarked many times, he was very apprehensive about operating on me.
Eventually, he left UVa and KCRC and I wound up with a new orthopedic surgeon, Dr. Mark Abel (who was utterly fantastic). My first appointment with Dr. Abel, he suggested operating. My mother left, taking me with.
When we returned, he was less gung-ho about putting me under the knife.
I can't remember exactly how long it took between when Dr. Abel first talked about operating on me and when I was actually operated on. I want to say that it wasn't very long, but to tell the truth, I have no idea. What I've written is entirely reconstruction, a melding together of the stories I've heard from my mother.
I do remember that I was not scared of that first surgery. I had no ability to comprehend what it would entail. It was fun, exciting, a mystery—just think, I'd be the only kid in my grade to have had surgery!
I remember quite clearly sitting on the arm of our big green chair in the library, leg swinging, music playing in the background, very calm, ready to go on the morning of that first surgery.
Other than having a straight leg, that is.
For a week or two I've been meaning to start writing down my backstory, my previous history with legs, osteochondromas and surgeries, figuring that it would be helpful for me and perhaps interesting to know given the general purpose of this blog.
Hence, today's inaugural backstory entry.
RECONSTRUCTED MEMORIES
I had my first surgery in the winter of 2004 when I was nine years old, which is to say, these issues with my legs have been prevalent in my life for a while now. Supposedly, when I was very young, I ran around outside all the time. When my family lived in Virginia, we had a wonderful large yard, complete with several freestanding stone sheds and a gorgeous magnolia tree perfect for climbing. I can remember the yard very well.
I cannot, however, remember pending all my time outside. I have a smattering of memories from that time: an isolated incidence of standing on a Minnesota parking lot, free of context, a small dirty-white dog leaping up to bite my uncle's hand, our larger dogs staring into the house from the porch, me lying on the floor with a marker in my hand, creating construction paper books. But not of running.
My parents say that when we visited people's houses I would run around outside and ask to see their gardens. I have manufactured memories of this, probable images informed by these stories but with no grounding in concrete remembered images.
My surgeon in Virginia had his office in a low-lying building called KCRC: the Kluge Children's Rehabilitation Center, ran by the University of Virginia. The waiting room at KCRC was a wonderful thing. They had piles and piles of magazines to peruse, a row of computers to play on, and, most impressive of all, a large room with enormous windows stocked with everything I adored: a plastic climbing-castle, coloring supplies, a table covered in Thomas trains.
I remember climbing in that castle very well, pretending with my brothers that we lived in the medieval ages while for the most part ignoring the other children, sliding down the anachronistic yellow slide emerging from the side of the structure.
I remember my first orthopedic doctor considerably less well. When I was three, my parents noticed a suspicious lump beneath my knee. Fearing the worst, I was taken in to the doctor's and diagnosed with multiple osteochondromas, a disease I inherited from my mother (the immediate blame, as with many immediate blames, went to my father though eventual testing revealed my mother to be the culprit in passing down my condition). In short, I've been meeting with doctors about the condition for a while now.
The first doctor, if my memory serves, was an old man with white hair. As my mother has remarked many times, he was very apprehensive about operating on me.
Eventually, he left UVa and KCRC and I wound up with a new orthopedic surgeon, Dr. Mark Abel (who was utterly fantastic). My first appointment with Dr. Abel, he suggested operating. My mother left, taking me with.
When we returned, he was less gung-ho about putting me under the knife.
I can't remember exactly how long it took between when Dr. Abel first talked about operating on me and when I was actually operated on. I want to say that it wasn't very long, but to tell the truth, I have no idea. What I've written is entirely reconstruction, a melding together of the stories I've heard from my mother.
I do remember that I was not scared of that first surgery. I had no ability to comprehend what it would entail. It was fun, exciting, a mystery—just think, I'd be the only kid in my grade to have had surgery!
I remember quite clearly sitting on the arm of our big green chair in the library, leg swinging, music playing in the background, very calm, ready to go on the morning of that first surgery.
Monday, November 26, 2012
One Month Remaining
One month from today, I will have major, life-altering orthopedic surgery involving a stay at the hospital lasting multiple days, a stint in the wheelchair, months of struggling with stairs and perhaps the world's least attractive medical device. I feel really quite calm about it, much more so than I did a month ago. Then, I felt like the entire world was piling up and I was trapped beneath a massive wave, an accumulation of detritus and objectives and future stressors.
But now?
Now I'm sitting on my bed in loose-fitting jeans and a comfortable t-shirt. My legs are crossed in front of me. I'm breathing easily. Outside, temperatures have plunged into the realm of uncomfortable (even when one is armed with warm jackets and scarves). But inside four solid walls, I'm really quite comfortable, thank you very much.
Perhaps this calmness is because said procedure will provide a cure to one of my current afflictions. My right ankle currently exists in a perpetual state of twistedness. Most of this twistedness seems to come from my leaping around on stairs like a lunatic. Yesterday, however, I was standing on the stairs. I was not moving. And…the ankle twisted. I'm fairly certain that the geometry of the leg leads to problems with the ankle (the interior of my right shoe is built up to help keep the foot happy). With my friend the frame, the geometry of the leg will be fixed. Hence, no more ankle twisting.
Perhaps this calmness is because I just received hopeful tidings regarding life immediately post-frame. One of my friends' mother recently broke her leg, shattering her tibia and fibula (from what I understand) and had a frame put on. On Monday, the frame was taken off. Apparently life immediately post-frame is somewhat straightforward to adjust to. This bodes well.
Or perhaps this calmness is simply because I just spent five days lounging around the house, trying to chill out. It's telling that my major accomplishment over Thanksgiving was finishing The Stand (1400 pages later and, despite the book very clearly ending, I've spent enough time reading it that I'm not fully convinced I actually turned the last page). Which is to say, I'm rested now.
There are still unknowns ahead. The pre-op appointment has yet to be scheduled. Despite doing my best to read up on how it feels to have your leg impaled by a Taylor Spatial Frame, I'm not really prepared for such an occurrence. I struggle with the idea of being unable to walk.
But…again, I'm calm.
Will the experience be interesting? Undoubtedly. But I should also survive, fairly easily, to tell the tale. And, in the end, my leg will be straighter.
And, hopefully, my ankle will have escaped its current state of perpetual twistedness.
But now?
Now I'm sitting on my bed in loose-fitting jeans and a comfortable t-shirt. My legs are crossed in front of me. I'm breathing easily. Outside, temperatures have plunged into the realm of uncomfortable (even when one is armed with warm jackets and scarves). But inside four solid walls, I'm really quite comfortable, thank you very much.
Perhaps this calmness is because said procedure will provide a cure to one of my current afflictions. My right ankle currently exists in a perpetual state of twistedness. Most of this twistedness seems to come from my leaping around on stairs like a lunatic. Yesterday, however, I was standing on the stairs. I was not moving. And…the ankle twisted. I'm fairly certain that the geometry of the leg leads to problems with the ankle (the interior of my right shoe is built up to help keep the foot happy). With my friend the frame, the geometry of the leg will be fixed. Hence, no more ankle twisting.
Perhaps this calmness is because I just received hopeful tidings regarding life immediately post-frame. One of my friends' mother recently broke her leg, shattering her tibia and fibula (from what I understand) and had a frame put on. On Monday, the frame was taken off. Apparently life immediately post-frame is somewhat straightforward to adjust to. This bodes well.
Or perhaps this calmness is simply because I just spent five days lounging around the house, trying to chill out. It's telling that my major accomplishment over Thanksgiving was finishing The Stand (1400 pages later and, despite the book very clearly ending, I've spent enough time reading it that I'm not fully convinced I actually turned the last page). Which is to say, I'm rested now.
There are still unknowns ahead. The pre-op appointment has yet to be scheduled. Despite doing my best to read up on how it feels to have your leg impaled by a Taylor Spatial Frame, I'm not really prepared for such an occurrence. I struggle with the idea of being unable to walk.
But…again, I'm calm.
Will the experience be interesting? Undoubtedly. But I should also survive, fairly easily, to tell the tale. And, in the end, my leg will be straighter.
And, hopefully, my ankle will have escaped its current state of perpetual twistedness.
Thursday, November 22, 2012
Thanksgiving
Well, today is Thanksgiving, which means I've spent a solid amount of time putting together felt turkey kits from Target. I haven't been any help, dinner-wise, though. This is probably a good thing, as evidenced by the following conversation:
Me: How do you tell the difference between a sweet potato and a potato? You know, with the skin still on?
My mother (holding a sweet potato): Well, these are red and potatoes are brown…
Me (looking at the decisively red potato-object): That would be a fairly easy way to tell.
I did, however, manage to find a reasonably sized turkey at the grocery store and helped taste-test a few appetizers. So some accomplishments, albeit not dealing with actual skills involving food. Apparently at some point before I head off to college in the fall I will be learning how to cook some basic meals. My current food repertoire more or less starts at cereal + milk = breakfast and ends at bread + stuff + more bread = sandwich.
Other activities from today include playing chess with a brother (he made me play to show off his fancy opening-of-the-game strategy which turns out to be an open-the-game-and-end-it-too strategy), playing with the piano, pretending that I'll get some reading done at some point, scrubbing a pot (singular), taking some of the dogs for a walk.
It was a rather interesting walk. We have a tight little loop through the neighborhood and the nearby rose garden we like to take. About halfway through said walk, I decided to let one of the dogs, Charlotte, take the lead. Charlotte completed the loop. Unfortunately, it was a mostly-completion. Charlotte completely missed the turn into the alley our house is on. She then proceeded to wander through the neighborhood and we wound up multiple blocks away from our end destination. She was still going strong when a mutual consensus was made between us humans (us humans here being me and my brother) to head on home. Unlike Charlotte the Shetland Sheepdog, we chose a straight, direct route home. My leg was giving up. I could feel some shards of crookedness.
Now that I'm home and have had some Thanksgiving dinner, with my traditional minimalistic amount of turkey meat and solid heapings of some of the cornerstones of Southern cooking, such as butter, sugar and pecans, I feel much better.
But, of course, the point of this post is not really to comment on the relatively small number of things I have managed to do today. Really, I thought it would be nice to write a little list of things I'm thankful for.
I'm thankful for family and for friends for for everybody who has been supportive. I'm thankful for dogs, those with a sense of direction and those without. I'm thankful for medical technology and a body which is in better shape now because of surgery than it would be without. I'm thankful for the ability to get up in the morning and walk. I'm thankful for contact lenses, which are wonderful things once you get them in your eyes. I'm thankful for snow, which makes the whole world sparkle. I'm thankful for music, for stories, for enjoyment, for laughter.
And despite my fear, I'm thankful for the Taylor Spatial Frame. I don't have it on yet and I suspect it will not be my best friend, but what I'm really thankful for is the knowledge that I'll be able to have an active future. A future where I can walk and move and be me.
That's what's been running through my head, more or less, this Thanksgiving.
Me: How do you tell the difference between a sweet potato and a potato? You know, with the skin still on?
My mother (holding a sweet potato): Well, these are red and potatoes are brown…
Me (looking at the decisively red potato-object): That would be a fairly easy way to tell.
I did, however, manage to find a reasonably sized turkey at the grocery store and helped taste-test a few appetizers. So some accomplishments, albeit not dealing with actual skills involving food. Apparently at some point before I head off to college in the fall I will be learning how to cook some basic meals. My current food repertoire more or less starts at cereal + milk = breakfast and ends at bread + stuff + more bread = sandwich.
Other activities from today include playing chess with a brother (he made me play to show off his fancy opening-of-the-game strategy which turns out to be an open-the-game-and-end-it-too strategy), playing with the piano, pretending that I'll get some reading done at some point, scrubbing a pot (singular), taking some of the dogs for a walk.
It was a rather interesting walk. We have a tight little loop through the neighborhood and the nearby rose garden we like to take. About halfway through said walk, I decided to let one of the dogs, Charlotte, take the lead. Charlotte completed the loop. Unfortunately, it was a mostly-completion. Charlotte completely missed the turn into the alley our house is on. She then proceeded to wander through the neighborhood and we wound up multiple blocks away from our end destination. She was still going strong when a mutual consensus was made between us humans (us humans here being me and my brother) to head on home. Unlike Charlotte the Shetland Sheepdog, we chose a straight, direct route home. My leg was giving up. I could feel some shards of crookedness.
Now that I'm home and have had some Thanksgiving dinner, with my traditional minimalistic amount of turkey meat and solid heapings of some of the cornerstones of Southern cooking, such as butter, sugar and pecans, I feel much better.
But, of course, the point of this post is not really to comment on the relatively small number of things I have managed to do today. Really, I thought it would be nice to write a little list of things I'm thankful for.
I'm thankful for family and for friends for for everybody who has been supportive. I'm thankful for dogs, those with a sense of direction and those without. I'm thankful for medical technology and a body which is in better shape now because of surgery than it would be without. I'm thankful for the ability to get up in the morning and walk. I'm thankful for contact lenses, which are wonderful things once you get them in your eyes. I'm thankful for snow, which makes the whole world sparkle. I'm thankful for music, for stories, for enjoyment, for laughter.
And despite my fear, I'm thankful for the Taylor Spatial Frame. I don't have it on yet and I suspect it will not be my best friend, but what I'm really thankful for is the knowledge that I'll be able to have an active future. A future where I can walk and move and be me.
That's what's been running through my head, more or less, this Thanksgiving.
Wednesday, November 21, 2012
Regarding Breaks
It seems at this point my existence is becoming a long trudge of schoolwork (homework and tests and the like) punctuated by brief breaks. Probably a bit of an exaggeration, but still…it is wonderful to be off of school, even if only for half a week, even with the knowledge that my next break, in about a month, will probably not be super restful, though I will be receiving anesthesia (and probably some pain-controlling narcotics, too) and will therefore be sleeping a ton.
But for now, a no-strings-attached five-day break.
I saw in the paper today that 43.6 million Americans will be traveling today, whether by plane (I imagine what the lines would be like at airports and feel glad that I'm not going that route) or by car (plus: no lines at airports, minus: traffic, second minus: cars are considerably more boring than planes). I'm not traveling at all. My family has decided to take it somewhat easy. After all, winter break will not be relaxing, at least for me. Might as well take what we can get. So we'll be doing Thanksgiving dinner, watching movies, reading. Taking a breath.
Which has been nice. Today, for instance, I woke up, read, cleaned myself up, went outside to sword-fight with my brothers, read some more. Well, technically it's a bout between pool noodles and foam swords, but still. It's nice being able to run around, especially seeing as the weather's quite lovely. To be fair, I wasn't paying much mind to the weather—foam swords have hard plastic cores, so I spent a solid amount of energy defending myself. Also apparently spent a fair amount of energy on getting my jacket covered in bits of leaves…I swear the thing is a magnet for general detritus (which then gets tracked into my room for the cat to eat).
As far as other updates go, I've now managed to get the contacts in with relative ease. Actually, I'm wearing them as I type this. They really are miraculous little things…I keep reaching up to play with the frames of my glasses, only to remember that I'm seeing quite well without needing annoying heavy cumbersome frames which support lenses that too frequently get dusty or fogged up from heat or humidity.
In other, unrelated news, I appear to be nearing the end of Stephen King's The Stand. I tried starting the book four years ago at the recommendation of an English teacher, only to be foiled by an edition with beyond-miniscule font (this despite the story playing out over 1100 pages). While at the bookstore recently, I spotted an edition with larger pages and readable font (over 1400 pages). During my last break, in October, I started the book on a plane. I kind of thought I'd still be trudging through its bulk while in the hospital with my leg skewered by a brand-new Taylor Spatial Frame. Apparently not. I still have 400 pages to go, but I'll have moved onto new and exciting stories come December.
Really, though, I'm just enjoying the ability to move around. To freely navigate the house, to play, to get up from my reading chair to raid the tortilla chips. And I'm finding it kind of hard to imagine life unable to walk, to roam. I know I've done it before, but, honestly, it's been years since I was in a wheelchair, and not in this house.
Should be interesting.
But for now, a no-strings-attached five-day break.
I saw in the paper today that 43.6 million Americans will be traveling today, whether by plane (I imagine what the lines would be like at airports and feel glad that I'm not going that route) or by car (plus: no lines at airports, minus: traffic, second minus: cars are considerably more boring than planes). I'm not traveling at all. My family has decided to take it somewhat easy. After all, winter break will not be relaxing, at least for me. Might as well take what we can get. So we'll be doing Thanksgiving dinner, watching movies, reading. Taking a breath.
Which has been nice. Today, for instance, I woke up, read, cleaned myself up, went outside to sword-fight with my brothers, read some more. Well, technically it's a bout between pool noodles and foam swords, but still. It's nice being able to run around, especially seeing as the weather's quite lovely. To be fair, I wasn't paying much mind to the weather—foam swords have hard plastic cores, so I spent a solid amount of energy defending myself. Also apparently spent a fair amount of energy on getting my jacket covered in bits of leaves…I swear the thing is a magnet for general detritus (which then gets tracked into my room for the cat to eat).
As far as other updates go, I've now managed to get the contacts in with relative ease. Actually, I'm wearing them as I type this. They really are miraculous little things…I keep reaching up to play with the frames of my glasses, only to remember that I'm seeing quite well without needing annoying heavy cumbersome frames which support lenses that too frequently get dusty or fogged up from heat or humidity.
In other, unrelated news, I appear to be nearing the end of Stephen King's The Stand. I tried starting the book four years ago at the recommendation of an English teacher, only to be foiled by an edition with beyond-miniscule font (this despite the story playing out over 1100 pages). While at the bookstore recently, I spotted an edition with larger pages and readable font (over 1400 pages). During my last break, in October, I started the book on a plane. I kind of thought I'd still be trudging through its bulk while in the hospital with my leg skewered by a brand-new Taylor Spatial Frame. Apparently not. I still have 400 pages to go, but I'll have moved onto new and exciting stories come December.
Really, though, I'm just enjoying the ability to move around. To freely navigate the house, to play, to get up from my reading chair to raid the tortilla chips. And I'm finding it kind of hard to imagine life unable to walk, to roam. I know I've done it before, but, honestly, it's been years since I was in a wheelchair, and not in this house.
Should be interesting.
Monday, November 19, 2012
More Information
Slowly but surely, the details surrounding the frame are settling into place. There are still an awful lot of variables (such as how I'll manage to navigate our house, which has an unfortunate number of staircases and an unfortunate number of hallways which might be a bit too narrow for wheelchairs to comfortably pass through), but some of the major uncertainties have been resolved.
Now, these uncertainties have arisen from two conflicting sources of information: my surgeon and the nurse. Generally speaking, what the surgeon tells me hints at a less scary recovery, whereas the nurse generally alludes to terrifying potential realities. I've decided that I'm going to believe the surgeon, for three reasons:
1) The less time I spend in the hospital, the better
2) He's the one who's putting this thing on my leg in the first place
3) The information he tells me is more consistent with what I've heard
So…I will officially spend two to three days in the hospital. Four or five days after the frame is placed, pin adjusting and the actual process of leg straightening will begin. I will be in a wheelchair and completely non-weight-bearing for four to six weeks. I will roughly miss school for the month of January. Supposedly I'll be fully weight-bearing in about eight weeks, but I'm not entirely sure I trust that figure. The frame itself comes off after four to six months. Probably closer to six than to four.
Breaking from speculation involving my future, I've managed to be fairly productive today. Put the contact lenses in (I'm starting to get better at this, which is good, even if I still need a very specific set-up including a mirror which lights up, the dining room table and the presence of my mother). I also started the slow and steady process of trying to figure out what I'll be doing school-wise during the month of January. I've already got some writing projects, in the form of this blog and a story I've been playing around with, to keep me busy, but the sad truth of the matter is I'll still have some sort of academic expectations to fulfill.
As it turns out, though, those academic expectations might not be too bad. First, I'm dropping from a seven classes (the maximum at my school) to five next semester. Second, all of my teachers have been really understanding. The general line has been do what you can do, don't worry about missing content. While I'll definitely have some work to do (you can't just miss a month of Chinese and hope to come back relatively on top of things, and I might translate some Latin for fun), it looks like that part of my recuperation won't be too terrible. Which is good. I think I'll have enough on my plate.
That's all for tonight. At some point I've been meaning to fill in my previous history with surgeries and my particular bone disorder, so that'll probably be the next post. For now, I'm just getting excited for a five-day weekend starting Wednesday. Holidays truly are wonderful things…
Now, these uncertainties have arisen from two conflicting sources of information: my surgeon and the nurse. Generally speaking, what the surgeon tells me hints at a less scary recovery, whereas the nurse generally alludes to terrifying potential realities. I've decided that I'm going to believe the surgeon, for three reasons:
1) The less time I spend in the hospital, the better
2) He's the one who's putting this thing on my leg in the first place
3) The information he tells me is more consistent with what I've heard
So…I will officially spend two to three days in the hospital. Four or five days after the frame is placed, pin adjusting and the actual process of leg straightening will begin. I will be in a wheelchair and completely non-weight-bearing for four to six weeks. I will roughly miss school for the month of January. Supposedly I'll be fully weight-bearing in about eight weeks, but I'm not entirely sure I trust that figure. The frame itself comes off after four to six months. Probably closer to six than to four.
Breaking from speculation involving my future, I've managed to be fairly productive today. Put the contact lenses in (I'm starting to get better at this, which is good, even if I still need a very specific set-up including a mirror which lights up, the dining room table and the presence of my mother). I also started the slow and steady process of trying to figure out what I'll be doing school-wise during the month of January. I've already got some writing projects, in the form of this blog and a story I've been playing around with, to keep me busy, but the sad truth of the matter is I'll still have some sort of academic expectations to fulfill.
As it turns out, though, those academic expectations might not be too bad. First, I'm dropping from a seven classes (the maximum at my school) to five next semester. Second, all of my teachers have been really understanding. The general line has been do what you can do, don't worry about missing content. While I'll definitely have some work to do (you can't just miss a month of Chinese and hope to come back relatively on top of things, and I might translate some Latin for fun), it looks like that part of my recuperation won't be too terrible. Which is good. I think I'll have enough on my plate.
That's all for tonight. At some point I've been meaning to fill in my previous history with surgeries and my particular bone disorder, so that'll probably be the next post. For now, I'm just getting excited for a five-day weekend starting Wednesday. Holidays truly are wonderful things…
Saturday, November 17, 2012
Eyes Minus Frames
My legs are not the only imperfect parts of my body. My eyes need some help, too. Long story short, I've been wearing glasses since the fourth grade. Big, thick, heavy glasses, glasses that did their best to fade into nothingness, glasses which had unfortunate encounters with gravel driveways, glasses which had unfortunate encounters with concrete driveways, glasses which held together, glasses which managed to disintegrate…
My current pair of glasses is one of those pairs of glasses that has issues. Several unfortunate dives to the concrete driveway have resulted in chips in the lens. And then there are the frames. Now, in the best of times my glasses tend to wind up crooked. These particular glasses have managed to exceed all expectations for misbehavior. So without further adieu, my current pair of glasses:
Though a bit crooked and dinged up, in this form they are intact. They stay on my head. This is not, however, how my glasses would like to look.
Note the one leg, mildly detached from the whole. This is a condition which can be triggered by a variety of sources, such as bus rides (I can't drive, so some days I ride a bus which manages to give air on straight, flat stretches of road with no major potholes), mild jolts, accidental brushings with fingers, general happiness, general unhappiness and just because.
Long story short, I got tired of the broken frames and chipped lenses. I decided to spring for contact lenses, picking up my first sets on Tuesday.
In theory, I love contact lenses. They allow me to see better and they get rid of the annoying frames on my face.
That's in theory.
In reality, contact lenses are massive pains to put on. It isn't the concept of potentially poking my eyes that gets me. I'm fine with that. The problem comes with getting them on my eyes in the first place. Apparently my eyes are a bit small and my eyelashes rather long, making it difficult to get those eyes open enough to stick the lens on top. I found this out the hard way on Tuesday. The eyeglasses store had to bring two people out to teach me. I dropped the lenses an impressive number of times. I took breaks. I paced around. Finally, a miracle happened: one lens went in. Then another.
At which point I had to learn to take them out. Surprisingly, that bit went well.
Flash-forward to Wednesday morning. I stand in front of the bathroom mirror, trying and trying and trying to get my eye open wide enough for the contact to get in (hopefully before I need to leave for school). That didn't work out. My glasses returned for the day. The one leg tried to fall off the frame.
Wednesday afternoon. More trying. More pacing. Take a break. Try some more. Pace some more. Give up. Do homework.
Thursday evening. My mother, realizing I needed help, bought me a magnifying mirror. I set it up at my desk and tried to get a lens in. I took breaks. I listened to music to try to reduce the stress. And the thing still would not go in my eye. Until another minor miracle occurred and a lens actually went in. The other lens, though, was less cooperative. Despite chocolates for positive thinking and moving my entire ensemble down to the dining room table, the lens refused to go in and I gave up and went to bed.
This afternoon. Back at the dining room table. Surprisingly, my smallish eyes were capable of being opened wide enough for the lenses to go in. I triumphed.
At the moment, I am not wearing glasses. Though my vision is really quite awful, I am capable of seeing things in reasonable detail. I do not have frames on my face in order for this to occur. I am not entirely sure this ability to see is real.
Long story short: getting out of frames and into contacts? Miserable.
Seeing from contacts? Remarkable.
 |
| (as I prefer them (minus the little flaws, such as crookedness and lens imperfections)) |
 |
| (as my glasses would like to look) |
Long story short, I got tired of the broken frames and chipped lenses. I decided to spring for contact lenses, picking up my first sets on Tuesday.
In theory, I love contact lenses. They allow me to see better and they get rid of the annoying frames on my face.
That's in theory.
In reality, contact lenses are massive pains to put on. It isn't the concept of potentially poking my eyes that gets me. I'm fine with that. The problem comes with getting them on my eyes in the first place. Apparently my eyes are a bit small and my eyelashes rather long, making it difficult to get those eyes open enough to stick the lens on top. I found this out the hard way on Tuesday. The eyeglasses store had to bring two people out to teach me. I dropped the lenses an impressive number of times. I took breaks. I paced around. Finally, a miracle happened: one lens went in. Then another.
At which point I had to learn to take them out. Surprisingly, that bit went well.
Flash-forward to Wednesday morning. I stand in front of the bathroom mirror, trying and trying and trying to get my eye open wide enough for the contact to get in (hopefully before I need to leave for school). That didn't work out. My glasses returned for the day. The one leg tried to fall off the frame.
Wednesday afternoon. More trying. More pacing. Take a break. Try some more. Pace some more. Give up. Do homework.
Thursday evening. My mother, realizing I needed help, bought me a magnifying mirror. I set it up at my desk and tried to get a lens in. I took breaks. I listened to music to try to reduce the stress. And the thing still would not go in my eye. Until another minor miracle occurred and a lens actually went in. The other lens, though, was less cooperative. Despite chocolates for positive thinking and moving my entire ensemble down to the dining room table, the lens refused to go in and I gave up and went to bed.
This afternoon. Back at the dining room table. Surprisingly, my smallish eyes were capable of being opened wide enough for the lenses to go in. I triumphed.
At the moment, I am not wearing glasses. Though my vision is really quite awful, I am capable of seeing things in reasonable detail. I do not have frames on my face in order for this to occur. I am not entirely sure this ability to see is real.
Long story short: getting out of frames and into contacts? Miserable.
Seeing from contacts? Remarkable.
Flaws With My Inner Frog
I've had a long history of not competing on school sports teams. The main reason why I haven't done so is because the vast majority of sports teams require some running and I have been told many times in no uncertain terms that running with my crooked leg is not a good idea.
In my freshman year of high school when I moved from Virginia to Minnesota (halfway through my freshman year, January 2010, to be exact), I decided to just go for it and participate on a school team. I chose to be a fencer, ultimately leaning towards epee rather than foil or saber because epee involved learning fewer rules. As I quickly found out, fencing involves quite a lot of squatting, which means lots of stress on knees. There was also some running involved, not a ton. Long story short, I competed on the team for half a season, half a season meaning half a season of trying to wrap my mind around basic fencing concepts followed by the final meet, at which I more or less charged people without technique, hoping to score points (it didn't work).
I showed up for captains' practice the next season. That went fairly well. By that point, I'd been informed that my leg was not straight and it might need to be straightened. While those practices did help convince me that maybe my surgeon had a point, I remembered the frightening descriptions of life with a frame from On Writing and more or less ignored that possibility. I then went to the first official practice of the season. I learned that I would be unable to do fencing and other cherished activities (i.e., answering trivia questions for points, working on the school literary magazine). And that was the end of my fencing career.
Well, the end of my fencing career until Monday. For the past three school years, I have diligently shown up to sports practices and done my best to participate. Generally, those practices have formed some of my favorite parts of the school year. Because of my future friend the frame, I could very well not be able to go to any practices as an athlete capable of general movement, such as walking without crutches. Which is why I decided to go to the final fencing captains' practice. No commitment, because it was captains' and the coaches wouldn't be there. And because my leg would be frame-free, I would be able to do the exercises.
That was the plan, at any rate.
After classes got out on Monday, I wandered around the school for a little bit, glancing around. The school has a wheelchair lift into the math wing, which looks quite impressive but probably will not fit a wheelchair with a full leg extension. I watched that in action. Then I wandered down to the gym, changed, started practice.
I'm not going to get into a list of mundane specifics of what happened during practice. There were stretches, including some which involved standing on one leg (I'm not that balanced, tragically). There was a dodgeball-like game (yes, running…I started off just fine but quickly tired; oddly enough, it wasn't the leg that was causing me trouble but my hip which was feeling questionable—I'm hoping that the hip troubles reflect a lack of conditioning rather than joint problems). There were crunches (though not good at crunches, I love them dearly).
And then there were the frog hops. Frog hops can basically be described as what you do when you decide to emulate your inner frog in the quest for stronger leg muscles. You squat down, push off using both legs, hope your move forward, repeat, repeat, repeat. The team was told to go across the gym (short way) and back four times.
I made it across the gym and back once. Though my inner frog is apparently not a particularly graceful jumper, being somewhat uncoordinated and with the barest conception of what a real frog in motion looks like, I felt pleased with myself. Athletic participation? Instant triumph.
Round two. I start going. My leg was not feeling good. My mind was shouting about the frame being inserted into my leg within the next several months.
Long story short, I didn't make it all the way across. I stopped halfway to the finish line and stumbled the rest of the way, collapsing onto a chair. At that moment, frog hops joined the List of Activities Which Do Not Agree With Crooked Legs, a list which includes running for more than very long, wall sits for more than very long, squats, squat-jumps and fencing (and others which I am yet to subject myself to).
I more or less sat out the rest of the practice. While everybody else was finishing frog hops, I leaned against the wall to stretch my leg. My left leg (straight) is capable of being stretched. The right leg (not straight) is decisively less capable, probably because of its flawed geometry.
Which is to say, I made an honest effort at attending an athletic practice as a person capable of walking. It just could have gone a bit better.
In my freshman year of high school when I moved from Virginia to Minnesota (halfway through my freshman year, January 2010, to be exact), I decided to just go for it and participate on a school team. I chose to be a fencer, ultimately leaning towards epee rather than foil or saber because epee involved learning fewer rules. As I quickly found out, fencing involves quite a lot of squatting, which means lots of stress on knees. There was also some running involved, not a ton. Long story short, I competed on the team for half a season, half a season meaning half a season of trying to wrap my mind around basic fencing concepts followed by the final meet, at which I more or less charged people without technique, hoping to score points (it didn't work).
I showed up for captains' practice the next season. That went fairly well. By that point, I'd been informed that my leg was not straight and it might need to be straightened. While those practices did help convince me that maybe my surgeon had a point, I remembered the frightening descriptions of life with a frame from On Writing and more or less ignored that possibility. I then went to the first official practice of the season. I learned that I would be unable to do fencing and other cherished activities (i.e., answering trivia questions for points, working on the school literary magazine). And that was the end of my fencing career.
Well, the end of my fencing career until Monday. For the past three school years, I have diligently shown up to sports practices and done my best to participate. Generally, those practices have formed some of my favorite parts of the school year. Because of my future friend the frame, I could very well not be able to go to any practices as an athlete capable of general movement, such as walking without crutches. Which is why I decided to go to the final fencing captains' practice. No commitment, because it was captains' and the coaches wouldn't be there. And because my leg would be frame-free, I would be able to do the exercises.
That was the plan, at any rate.
After classes got out on Monday, I wandered around the school for a little bit, glancing around. The school has a wheelchair lift into the math wing, which looks quite impressive but probably will not fit a wheelchair with a full leg extension. I watched that in action. Then I wandered down to the gym, changed, started practice.
I'm not going to get into a list of mundane specifics of what happened during practice. There were stretches, including some which involved standing on one leg (I'm not that balanced, tragically). There was a dodgeball-like game (yes, running…I started off just fine but quickly tired; oddly enough, it wasn't the leg that was causing me trouble but my hip which was feeling questionable—I'm hoping that the hip troubles reflect a lack of conditioning rather than joint problems). There were crunches (though not good at crunches, I love them dearly).
And then there were the frog hops. Frog hops can basically be described as what you do when you decide to emulate your inner frog in the quest for stronger leg muscles. You squat down, push off using both legs, hope your move forward, repeat, repeat, repeat. The team was told to go across the gym (short way) and back four times.
I made it across the gym and back once. Though my inner frog is apparently not a particularly graceful jumper, being somewhat uncoordinated and with the barest conception of what a real frog in motion looks like, I felt pleased with myself. Athletic participation? Instant triumph.
Round two. I start going. My leg was not feeling good. My mind was shouting about the frame being inserted into my leg within the next several months.
Long story short, I didn't make it all the way across. I stopped halfway to the finish line and stumbled the rest of the way, collapsing onto a chair. At that moment, frog hops joined the List of Activities Which Do Not Agree With Crooked Legs, a list which includes running for more than very long, wall sits for more than very long, squats, squat-jumps and fencing (and others which I am yet to subject myself to).
I more or less sat out the rest of the practice. While everybody else was finishing frog hops, I leaned against the wall to stretch my leg. My left leg (straight) is capable of being stretched. The right leg (not straight) is decisively less capable, probably because of its flawed geometry.
Which is to say, I made an honest effort at attending an athletic practice as a person capable of walking. It just could have gone a bit better.
Facts and Priorities
With bit less than a month and a half to go, I still know very little about what to expect with my Taylor Spatial Frame other than what I was told by the surgeon initially (should probably do some research…). The thing will straighten my leg. At some point it will probably be infected. If (when?) it gets infected, I could need to be re-hospitalized. After the procedure to place the frame on December 26, I will be in the hospital for somewhere between two and five days for pain control. Getting pants on over the frame will become a very interesting game. I will be moving downstairs from my second-floor bedroom so I can move around easier with my wheelchair. My mother is clearing stuff out of my future living-spaces this weekend.
I do have a new piece of information to add to the puzzle. Apparently I will miss about a month of school. Granted, I will miss about a month of the second semester of my senior year with my college apps done, done and done, so the academic pressure will be off, but still. That's a lot of content. So…that'll be interesting.
Really, that's it for new frame-related information. That said, I do have plenty to write about tonight, things I should have written about earlier but didn't have the time to. Now, before starting this blog, I scanned through other blogs and decided I liked them better when the posts weren't super long. Some of the posts here are already pretty long and I don't want this post to become the next War and Peace (or something like Stephen King's The Stand, a book large enough that it was recommended to me for its sheer heft (not to mention the fact that it's legitimately quite a good read)). Which is why I think I'll split today's post into a few mini-posts, each covering a different facet of what I want to cover.
Which is to say, this is the grab-bag post. I'll miss a month of school. And I had an interesting conversation today that's related enough to the general theme of the blog to be worth mentioning.
During Comparative Religion today, I was sitting next to another student whose throat has been causing him trouble, to the point where he's missed multiple days of school and been to the emergency room. Today he's undergoing throat surgery. He was nervously sifting through whatever information he could find online—a YouTube video of transplant surgery (I tried my best not to watch), an article asking whether general anesthesia was safe. Finally, he asked me about what it's like, surgery, whether you feel anything or…
I assured him you don't feel anything, that you go to sleep and the next thing you know you wake up and it's over with.
He asked if you dream, if you have any sense of the passage of time.
I said no. Not in my experience. But I did note the aftertaste is really quite awful.
When I had surgery for the first time, way back in third grade, the anesthesiologist described the smell of anesthesia to me as airplane gasoline. Now imagine airplane gasoline as a taste. That's what sticks in your mouth for days afterward. It's odd…I'm not concerned about waking up during my surgery in December. I am concerned about tasting airplane gasoline for days.
Perhaps I need to reevaluate my priorities?
I do have a new piece of information to add to the puzzle. Apparently I will miss about a month of school. Granted, I will miss about a month of the second semester of my senior year with my college apps done, done and done, so the academic pressure will be off, but still. That's a lot of content. So…that'll be interesting.
Really, that's it for new frame-related information. That said, I do have plenty to write about tonight, things I should have written about earlier but didn't have the time to. Now, before starting this blog, I scanned through other blogs and decided I liked them better when the posts weren't super long. Some of the posts here are already pretty long and I don't want this post to become the next War and Peace (or something like Stephen King's The Stand, a book large enough that it was recommended to me for its sheer heft (not to mention the fact that it's legitimately quite a good read)). Which is why I think I'll split today's post into a few mini-posts, each covering a different facet of what I want to cover.
Which is to say, this is the grab-bag post. I'll miss a month of school. And I had an interesting conversation today that's related enough to the general theme of the blog to be worth mentioning.
During Comparative Religion today, I was sitting next to another student whose throat has been causing him trouble, to the point where he's missed multiple days of school and been to the emergency room. Today he's undergoing throat surgery. He was nervously sifting through whatever information he could find online—a YouTube video of transplant surgery (I tried my best not to watch), an article asking whether general anesthesia was safe. Finally, he asked me about what it's like, surgery, whether you feel anything or…
I assured him you don't feel anything, that you go to sleep and the next thing you know you wake up and it's over with.
He asked if you dream, if you have any sense of the passage of time.
I said no. Not in my experience. But I did note the aftertaste is really quite awful.
When I had surgery for the first time, way back in third grade, the anesthesiologist described the smell of anesthesia to me as airplane gasoline. Now imagine airplane gasoline as a taste. That's what sticks in your mouth for days afterward. It's odd…I'm not concerned about waking up during my surgery in December. I am concerned about tasting airplane gasoline for days.
Perhaps I need to reevaluate my priorities?
Sunday, November 11, 2012
Let's Chat Procedure
Before really starting, a quick
update. Since last time, I’ve managed to submit my first college apps (yay!)
and survive an alumni interview—actually quite fun. I got to chat about roller
coasters and movies and other entertaining subjects. And I got to slurp down a sugary substance (granted,
I paid for said sugary substance, but still). So that’s been good.
But I’ve been looking back on this
blog and I realized that I really haven’t said much about the procedure I’m
going to have. While my hope is to eventually switch to more up-to-date as-it’s-happening
entries, I honestly have done nothing at the moment which warrants an entry. We
don’t even have my pre-op appointment scheduled, nor have we delved into the
wide and wonderful realm of making sure the school is handicap accessible. I’m
pretty sure its handicap accessibility is not as strong as it should be, but
that’s really a topic for when I know more about such matters (and have
pictures of troublesome areas in my school).
Hence my current plan, which is to
keep this blog floating with a stream of backstory, explaining who I am, what I’ve
had done to me before, why this scares me, etc.
Here we go.
So. The first time I heard about an
external fixator was the summer after eighth grade. I was thumbing through my
copy of Stephen King’s On Writing when
I got to the section where King discusses life after his 1999 car crash, life
which happened to include a bone-stabilizing device which was set in his leg,
featuring pins that poked out of his skin. I haven’t been scared much by King’s
books, certainly not at this point (I read The
Shining just this past winter). Then I got to this sentence: “I’ve never
had my leg dipped in kerosene and then lit on fire, but if that ever happens, I’m
sure it will feel quite a bit like daily pin-care” (268).
It was approximately in that moment that
I decided I would never, never, never, never have an external fixator.
Less than a year later, I met my
current orthopedic surgeon for the first time. He took an x-ray of my leg and
immediately started drawing lines on top of it using his fancy orthopedic
surgeon software. Said software told him within seconds that my right leg was
not straight. The solution? External fixator.
I was not amused.
He started describing what the
external fixator had done to other patients of his.
I went out and hid in the hallway
until the coast was clear. Kerosene-dipped legs on fire, I thought.
Kerosene-dipped legs on fire.
This most recent spring, my leg started feeling rather beat up. I was having troubles going up and down stairs (there are a lot of stairs at my school; while there is an elevator, it is a rather slow, scary elevator of doom and I'm quite convinced it's only a matter of time before it plummets to its doom). This was a problem. I returned to said surgeon and, within months, he had me convinced that this procedure was the right decision for my future.
But I have not actually discussed what the procedure is yet, not using clear terms.
So. During the procedure, the surgeons will remove wedges of my right tibia and fibula (the two bones in your lower leg). They will then place the Taylor Spatial Frame onto my leg. I will be sewn up and moved to my hospital room, where I will remain for a period of days for pain control (when the procedure was initially discussed, two to three days, but now I've heard four to five days and am feeling very confused). Before too long, we'll start making adjustments to the frame, which will straighten the bones out and before too long I'll have a straight leg. Then I'll just need to wait to get my frame removed and all will be well.
This will probably make more sense with pictures. I don't really want to attach pictures into this blog that I haven't taken, but I don't see any reason why I can't link to Wikipedia: http://en.wikipedia.org/wiki/Taylor_spatial_frame (NOTE: my frame will not necessarily look like the frame pictured with the article). http://en.wikipedia.org/wiki/Ilizarov_apparatus is also rather helpful for understanding this procedure. Book-wise, the only thing I can think of is the final section of the aforementioned On Writing. King doesn't discuss his frame for very long (or with any fondness), but what he does have is clearly stated and informative, albeit a bit frightening.
That's all for now! Hopefully I'll write again soon…
Tuesday, October 30, 2012
Regarding Pressure
So. It probably would make sense at some point to mention a few things about me. Namely, who I am in a general sense of the word.
Who I am at the moment is a high school senior attending an overly competitive Minneapolis independent school with fewer than 48 hours to go until I submit my first college applications. I also have fewer than two months before my entire academic performance more or less tanks (or maybe not? it'll be interesting…from the looks of things, I'll be missing a solid amount of classes with my friend the frame). Simply put, my expectations for myself are high. Way too high.
At which point it makes sense to mention the first major impact my friend the frame has had on my life. This thing has added so much pressure to my interior expectations for myself. It has added a ticking time bomb to the timeline of my accomplishments.
T-3 months.
T-2 months.
And so on.
What happens when the timer reaches zero, I have no clue (I mean, I sort of know—I'll be put under general anesthesia, wheeled into the operating room and have a frame placed on/in my leg). But what I'll do with it on…well, therein lies the interesting bit.
I don't know what I'll do with the frame on.
Which is why, at the moment, I'm determined to push myself past pushing. Seize the moments I have left for academic performance. Go—go—go—go. Dominate these next seven weeks (or however many it actually is). Build up a reserve of goodwill.
Less than two months and counting.
I wish I could just relax.
Who I am at the moment is a high school senior attending an overly competitive Minneapolis independent school with fewer than 48 hours to go until I submit my first college applications. I also have fewer than two months before my entire academic performance more or less tanks (or maybe not? it'll be interesting…from the looks of things, I'll be missing a solid amount of classes with my friend the frame). Simply put, my expectations for myself are high. Way too high.
At which point it makes sense to mention the first major impact my friend the frame has had on my life. This thing has added so much pressure to my interior expectations for myself. It has added a ticking time bomb to the timeline of my accomplishments.
T-3 months.
T-2 months.
And so on.
What happens when the timer reaches zero, I have no clue (I mean, I sort of know—I'll be put under general anesthesia, wheeled into the operating room and have a frame placed on/in my leg). But what I'll do with it on…well, therein lies the interesting bit.
I don't know what I'll do with the frame on.
Which is why, at the moment, I'm determined to push myself past pushing. Seize the moments I have left for academic performance. Go—go—go—go. Dominate these next seven weeks (or however many it actually is). Build up a reserve of goodwill.
Less than two months and counting.
I wish I could just relax.
Friday, October 26, 2012
First Post: Two Months Remaining
There’s
this image I haven’t been able to get out of my head. It's funny: some days I see it in tones of sepia, sometimes in full-blown
oversaturated color, but the basics remain the same. Some days I look at it and know it's not true and other days I all I want is for my image to be true.
Here it is:
a leg, encased by ropes, drenched by sunlight pouring in through an open window.
What the sunlight reveals is that, beneath the ropes, the leg isn’t straight.
It’s crooked. Deformed. And off in the corner, there’s a lever attached
to the ropes by a series of gears and wheels and pulleys. Somebody
pulls that lever. The ropes tighten. Pieces in the leg rearrange themselves, fit themselves together just like they were supposed to fit in the first place. Problem solved.
The ropes come off and the whole world can see a nice,
straight leg.
Look. I
know it’s a fantasy. I know it’s wish-fulfillment. I know that in real life the
ropes would do nothing, and if they did blood vessels in the leg would stretch
and burst and perhaps the entire thing would need to be amputated.
My leg is
crooked.
I have a
disease, multiple osteochondromas (that’s how I think it’s how you spell it,
though I could be horribly off) that causes my bones to spur off in a multitude
of interesting directions. The spurs look rather fascinating on x-ray, like the
dribblings of half-melted candlesticks or the landscape of some alien planet.
But they also get in the way of joints and in the way of the growth plates in
my leg, resulting in the aforementioned limb crookedness.
Two months
from today, I will be undergoing somewhat elective surgery to try and
straighten my right leg. The procedure involves removing wedges of bone and
applying something called a Taylor Spatial Frame to the leg. More on that
later.
This isn’t
the first time I’ve had surgery. To be honest, I don’t know how many times I’ve
been wheeled back to the operating room to have my body opened up with sterile
surgical knives. I try not to keep track of numbers like that. This is,
however, the first time I’ve had anything like a Taylor Spatial Frame, the first time I'll have a souvenir to lug around post-op other than a swiftly healing incision.
To put it
one way: I’m scared. I think I’m more scared than I’ve ever been in my life.
And that’s why I’m writing this blog. Other people have documented their
experiences with these frames, but I figure the more information out there, the
better. If I can ease anybody’s uncertainty about this process, provide any
helpful tidbits or factoids, well, mission accomplished.
There's another reason I'm writing this. I'm writing because words have power. Perhaps not the power to straighten the leg without a frame, but the power to comfort.
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