BYOC

What does one do when injured by a chair and needing to be extra careful about posture?

I’m fortunate enough to have a chair that’s build for me, meaning it’s designed as specifically as possible to my unique posture needs.

I’m talking about my wheelchair.

There are additional benefits to having a wheelchair that people don’t think about, and this is certainly one of them.

Having somewhere to sit that you know won’t cause pain or discomfort doesn’t seem like a big deal, but for some people it is.

You’ve heard of BYOB? Sometimes I BYOC

This isn’t a new thing for me, but as the years pass I find more times when it is beneficial.

Once I remembered I had the BYOC option I remembered the 1st time I write about the topic.

____  

The holidays always make me think of recovering from surgery. My last surgery was in September, the one before that January, my SDR was in October, and I even had a large birthmark removed during the holidays one year.

Did you know some surgeons frown on having surgery requiring a long recovery period in the summer? Something about being more inclined to be more active in warmer weather, I think.

Three years ago (almost to the day) I was given the O.K. to stand up. So I did. I’d love to tell you that I strolled out of the clinic that day but it doesn’t quite work like that when you’ve spent months off your feet at all costs.

This wasn’t the first recovery process I’ve dragged my family though but this one has been different than the others, at least to date. This one involved the shouting, “Come get Sarah in the house,” for one thing. And even that became shockingly normal after a few tries.

I thought I’d be “up and around” by Christmas that year. A month was enough time to learn to walk again right? (Plus it wasn’t my first time at this rodeo either) I wasn’t thinking I’d have to maneuver a wheelchair though a house crammed full of people.

But when the day came I was still relying on wheels to get me from point A to point B so my cousins carried me into the house. I rolled in and quickly turned to the left.

Christmas day in my family is legendary. There’s a running joke that if you return for another Christmas you’re probably going to stick around for a while.

We’re the only family (that I know of), that won’t go buffet. It’s “not how Christmas should be,” we all have to sit down at the table and eat, together. The table runs the length of the dining room, literally. So if you walk in the “wrong” entrance you walk into the table.

I’ll admit it’s an intimidating table, and this is my normal.

Trying to fit a wheelchair at a table that’s had to adopt the mantra, “just because a plate can fit there doesn’t mean a person can;” have I mentioned that we have to borrow chairs from other people/places in order to make this work?

So fitting a wheelchair at a Christmas table……

Thankfully my request was honored and I was privileged to sit on an end. It was pretty easy actually.

This one year my cousin brought his girlfriend to dinner. She was trying to be polite asking my cousin questions as quietly as possible. I say she was tying to be quiet because it’s impossible to do anything without someone noticing when you sit that close to each other.

“How many people are here right now?”

My cousin looks down the table and makes an educated guess, but his younger brother (& one of my carriers) and I overhear the guess and feel compelled to jump in, it’s what we do.

“We needed 29 chairs, so there are 30 people here.”

“That makes sense 29 chairs, plus me, so yeah 30 people”

“If we needed 29 chairs then there are 29 people here.”

“No there isn’t, I brought my own, so it’s 30”

I just had to throw a joke in there somewhere, because all of us trying to do math isn’t funny enough.

“There are 29 people here.”

“She brought her own chair. There are 30.”

“No”

“Sarah brought her own chair.”

Error in judgment realized, joke understood, the whole section of the table burst into laughter, girlfriend sits there confused, which is probably part of the reason she didn’t return the next year.

The things I do to get to sit at the foot of the table.*

*To avoid confusion one end of the table is called the “head” and the other is referred to as the “foot.”

*A similar version of this post first appeared on an old blog on November 29, 2012

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Unliked Questions With Disappointing Answers

I don’t like being asked two questions:
”What does having CP mean to you?”
”How does CP effect you?”

I don’t mind being asked them, if that’s how you feel you can best verbalize yourself. It’s just difficult to answer. I, like most people don’t like talking about myself, but blogging works somehow.

The first question sounds like I should be in the middle of the interview portion of a special needs beauty pageant. I really want to respond “world peace,” because doesn’t someone use that answer at least once in pageants?

I don’t subscribe to the school of thought that says, “I may have CP, but CP does not have me.” For a very complicated reason, that I won’t get into now, that kind of response leaves a bad taste in my mouth.

But my actual answer to, “What does having CP mean to you?”
It’s part of who I am. Not who I am.

Now on to,” How does CP effect you?”
This is the most generic question you can ask.
Sounds like the best way to leave the door open for sharing right?

Here’s the problem.
Expectations come with the question.
The “asker” has an agenda, usually looking for commonality.

Parents want to know what older CP people were like at their kid’s age; to see the light at the end of the tunnel now. As much as I can understand the need for it I don’t think there’s much thought behind the motivation for asking. CP is vast and varied, I’m wary of what I tell people, especially at first interaction, because I don’t want my successes (or failures) to dictate another kid’s life, and I try to make the point to keep the door open for many possibilities.

I was born in the 80s. SDR was becoming common. There was PT, OT, ST, and a few other things. There was no Botox, Baclofen pumps, Anat Baniel, Feldenkrais, Conductive Education, ABR and CME, (if there was it certainly wasn’t popular) and that’s just the short list I’m guessing.

I should also take the time to mention that my parents made stuff up as they went along, because there were few or no options. My father made my first set of crutches, toe clips for my tricycle, weighted my push toys so when I used them to stand up they wouldn’t land on me, and made adjustments to my AFOs in the kitchen with a blowtorch.  (In his defense, as much as mine, he’s an engineer). My first “official” crutches were pink, because they only came in pink, blue, and silver.

There are more options now. For that reason alone you can’t really compare my experience to a child today, although there are parallels. We’ve come along way!

When I answer the “effects” question I’m happier when I happen to discover the family first, usually though blogging since I’m a big lurker. I get context that helps me give answers.

I could give a standard rundown of “me” but it would probably be my GMFCS level, surgical history, list of current medications, GPAs though school, SAT scores, extra curriculars, highest level of education, current job, future career goals, and a 5 year plan.

But that doesn’t tell you how CP affects me. More importantly, it’s not me. I’m not facts, figures, and statistics. I’m a person. I want to tell you about me, and who your child, any child, can become. Leave the facts and figures for the medical pros

Parents aren’t the only ones at fault either. Recently I’ve formed a friendship with another girl with CP (I don’t say CPer, another thing that leaves a bad taste) and during our first conversation she asked, “How does CP effect you?” I had to be honest with her, as another person with CP; I never know how to answer the question. She then shared the same sentiment. So as much as the question isn’t preferred we often fall into the same trap.

Make no mistake. I don’t mind answering questions, within reason of course. I know I’m a rarity, particularly when it comes to blogging. If I don’t take on the responsibility, there are very few people that will. Ask what’s really on your mind. I don’t mind, and if I do, I will tell you.

Now that I’ve gotten off my soapbox, are there any questions?

*A similar version of this post was written on December 1, 2011

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

Practice Makes Almost Perfect

I was sitting on the side of the deep end of the pool looking at the bottom. The last time I attempted any sort of dive was at least 10 years and 2 surgeries ago. I knew it wasn’t impossible I just couldn’t picture it, but here I was about to attempt it.

“The worst that can happen is that you fall in the pool.”

That is the worst thing that could happen, God willing. I spent a few summers at camp practicing water safety so I know what to do to if I fall into a pool and do my best to protect myself from serious injury. Plus, I was sitting next to a woman who had worked at the same camp so although we don’t remember each other from back then we can find some common ground when needed.

We figured out the mechanics the best way we could without actually doing it. I made the remark that it’s been so long since I’ve done anything like this that I really wasn’t sure it could happen, physically. She agreed that I was different physically since so much time had passed, but said nothing about the tight muscles, metal plates, screws, etc.

“I have to worry about normal people stuff too!?!” came flying out of my mouth, and I meant every word. I joined this swim club to have more disability/ability focus so I wasn’t thinking normal body mechanics (thanks to puberty) would come into play.

One of the most common challenges for people with Cerebral Palsy is motor planning, something I’ve alluded to a few times already, so executing multiple moves in the span of a second, or in this case less, isn’t something that comes easily (and on the rare occasion when it does you hang onto “your way” as hard as you can).

There are a variety of ways one can execute a dive in the world of Para-swimming. The trick is finding what works for you.

I knew a standing dive was out of the question, between my spasticity and startle reflex there would be little chance for consistent conditions to get the most out of practice.

I knew what kind of dive I wanted to do. It seemed like the best of the possible “happy mediums” to be able to maintain correct posture and come off the wall as quickly as possible without expending a lot of energy, but that was out of the question too (thanks to high riding patellas).

That left me sitting on the side of the pool trying to find my “sweet spot” the place where I would have the best balance and having the longest dive possible. And if that meant falling into the pool a few times that’s what I would have to do.

It wasn’t the worst time of my life but I can’t say it was all that pleasant either. I was able to figure out what works, what doesn’t, and what I need to fine tune.

A few days later I was at the gym and explaining the mechanics of diving to my PT, which basically comes down to three-ish parts.

“That’s a lot to do in a split second.”

No kidding.

Now I’m not saying learning something new isn’t impossible but it can be tricky when motor planning is pretty much the exact opposite of your forte. It’s important to practice, obviously. But it’s also helpful to practice with someone who knows what they’re doing better than you do, if possible, so they can provide the needed feedback, in my humble opinion.

I know how things are supposed to look but I don’t know how things are supposed to feel in order to achieve that look, my brain just can’t compute. In all honesty I can’t imagine how normal brains are capable of processing something like a dive with less difficulty, maybe some aren’t, I have no idea.

That’s where the need for practice comes into the picture.

I was once told, “Doing something once is easy, repeating it is the hard part.”

Once I’ve gained a skill, of any sort, I have to practice it in the most ideal conditions in order for it to stick. Then I need to practice it in slightly different conditions to plan for the unexpected, as much as possible.

I can’t speak for everyone but it’s mentally and physically tiring, and usually my mental stamina gives out first because it can be just so boring. I’m not even going to get into the frustration of seeing someone achieve the same goal and knowing you’re going to have to work at least twice as hard, but I will say that this is where having smaller goals towards bigger goals helps.

I’m sure you’ve heard the saying “practice makes perfect,” and it’s true. However, when you have Cerebral Palsy you might have to redefine what makes perfect “perfect.” People with CP are wired differently than our able-bodied counterparts, and I mean that pretty literally. The whole world is running on Wi-Fi and we’re still trying to function with dial up, and when that doesn’t work, fax machines.

From Here To There

I’ve given you my thoughts on SDR 30 years later, but what I don’t think I really told you is what that can sometimes mean for me when it comes to daily living.

Having Cerebral Palsy means my brain can’t always communicate with my muscles effectively, or at all. Not only do I have to think about every move I have to make but sometimes I have to think about every step of the process. As John Quinn says in his book Someone Like Me it’s not uncommon for me to have to think out how to walk, as in ‘Go. Pick up left foot. Put left foot down. Pick up right foot. Put right foot down. Stop.’

Now because I’ve had a SDR there’s always some extra thought in the process, especially if I’m doing something new, requires correct form, or it’s hard for me to see my feet. I have pretty good spatial awareness given my deficits but it can take a while for my brain and the rest of my body to get on the same page.

I’ll give you three examples:
-If I’m asked to move my feet laterally I have to be looking at my feet in order for even the most remote chance that this could happen.
-If I’m going to be prone on an exercise ball I often ask someone to “set my feet” before I start any exercise, because being able to look at the position of my feet and stay balanced on a round movable object and then move my feet if necessary. I have gone to check the alignment of my feet only to find one-foot laying parallel on the floor and the toe of my other foot pointing to the other one. When you can only feel pressure in your feet it’s pretty easy to think you’re balancing on your toes.
-If I’m going to cross my legs I usually have to pick up one leg and cross it over the other, unless I want to chance flinging myself out of a seated position by allowing my legs to move under their own power (which has happened).

” Does that make sense?”

“Up here it does, but who knows what’ll happen when it gets down there.”

This isn’t an uncommon interaction between a physical therapist (or trainer or coach, etc.) and myself; you see it’s not so easy to get instructions from here:

To travel down here:

Spine

To end up here:

boots

And get the desired results.

Yet it happens every day, multiple times, more than any of us can probably count.

So we should all count our blessings for each time traveling from here:

To there:

shoes
(or anywhere else)

Is successful.

Because sometimes it ain’t so easy.

*A similar version of this post first appeared on an old blog on February 23, 2010

SDR: Thoughts Almost 30 Years Later

I keep telling my family that I can’t wait until I’m 33 years old.

And it has nothing to do with it being referred to as your “Jesus Year” in some circles.

I can’t wait because I’ll be able to say “My SDR was 30 years ago.” For one thing it makes the math easier for me and the resident(s).

Because when I give them the year I had my SDR or how old I was when I had it a look comes over their face like I’ve just asked, Train A, traveling 70 miles per hour (mph), leaves Westford heading toward Eastford, 260 miles away. At the same time Train B, traveling 60 mph, leaves Eastford heading toward Westford. When do the two trains meet? How far from each city do they meet?”

I should also tell you that I often have to then explain what an SDR (short for Selective Dorsal Rhizotomy) is because they aren’t as popular as they used to be (due in part to the Intrathecal Baclofen Pump, I think). It’s funny because I didn’t know what it was for a long time, even thought I had it done, so I’ve had to educate myself because I realized I had to educate others. I even have a short description of every surgery I’ve had with my list of pervious surgeries. 1) To give people a heads up while they’re reviewing my records before an appointment. 2) I can’t spell Rhizotomy (neither can spell check).

I have mixed feeling about getting old, but this is one thing I’m looking forward to more than others.

Andi at Bringing the Sunshine shared her thoughts about SDR some 10 years later. I wondered if people would be interested in thoughts from someone who had the same procedure almost 30 years later. Andi’s answer was a resounding “yes” so I’m taking that as a sign that others might be interested as well.

Here are some basics:

-How old were you when you had it done? I was 3. I remember it being around Halloween because my grandma decorated my room which included a very large, to a 3-year-old, Happy Halloween banner.

-What was she able to do/not do before/after? I don’t remember much about that but the surgeon who performed my surgery told me that he got a call from my mom once I was home asking what he had done because she found me either sitting on top of our piano or I had something in my hands that was previously on top of the piano and when she asked me about it my answer was “I climbed.” My surgeon told my mom, “Well you have a climber now.” So I could climb things and get into trouble, like most 3 year olds.

-Where was it done/who did it? Why did you go there instead of (fill in the blank)? It was done at local hospital by a surgeon (who will remain nameless because I didn’t clear mentioning him beforehand) who came from NYU after training with Dr. Park and/or Dr. Peacock. We didn’t go anywhere else because it was the best fit for me and my family.

-What was the recovery like? Honestly? Confusing. I was told I was getting “new legs” so when I looked down and saw my “old legs” still attached, because who wouldn’t want to see what new legs on your body looked like, I was confused. I was even more confused when people would come to visit and look at my back (especially my cousins who are roughly my age). I remember asking why people kept looking at my back and then reaching over and feeling large plastic things coming out of my back. I remember wondering if I looked like a Stegosaurus because they felt like scales. My mom told me I had staples in my back and she says when she saw how wide my eyes got she realized that maybe someone should’ve mentioned that surgery was going to be on my back and not actually on my legs. I stayed in the hospital for what felt like a long time, but was probably more like a week.

-How much physical therapy rehab was required? What did they do? I had PT Monday-Friday for a year at the outpatient facility associated with the hospital where my SDR was done, as well as a home program. I had OT as well but I don’t think it was as intense as PT. I don’t remember anything in particular that stands out from that time, balance work, coordination exercises; basically I had to relearn how to my body worked because things were so different. Once the post-operative obligations and goals were met I went back to my normal PT routine of twice a week at a private PT practice closer to home.

-How quickly did you see a difference? Honestly I can’t remember much of that other than people telling me I looked “good” or “better” which can be taken in a host of ways even when you’re 3. I do remember the first time I stood up and saying that my legs felt like Jell-O would be a bit of an understatement.

-Did your insurance cover it? Yes, but in order to do so my parents had to sign agreements that they would be committed to the recovery plan and I’m sure a few other things in order for it to be covered.

What I Thought I Knew Then:

I thought I was getting new legs, literally. It’s kind of weird how comfortable I was with the idea of having a different set of legs attached to my body. I mean, I didn’t wonder where they were going to get the new legs from?

My new doctor was the one making the decisions. I didn’t realize the decisions my parents had to make prior to having surgery. I thought everyone was in agreement. I didn’t learn until recently that that wasn’t exactly the case.

My dad, and maybe my mom, thought I would need any other surgeries in the future. I don’t think the thought ever crossed my mind, for whatever reason. I had two other major surgeries, at age 12 and then again at 24. I’ve known people who have had more than 2 surgeries after SDR & I’ve known people who have had none after. With CP you can never say never, growth spurts can be detrimental.

I thought what was done was done. My SDR left me with decreased sensation in my legs and toes and some decreased or no movement particularly in my feet and toes. After my last surgery (fall ’09) I began having some feeling in my thighs and just last year I started to experience intermittent sensation in some of my toes. I don’t know how this happened or how common it is but it’s been interesting to say the least.

I thought everyone knew what was happening. It wasn’t until people with cameras started taking pictures of me during PT and asking my mom questions that I wondered what the big deal was. What I didn’t know then was that SDR was relatively new and I was the 1st patent in the state to undergo SDR surgery.

What I See In Retrospect 30 Years Later:

Would I have it done if it were my choice. I have no idea. I’d like to say “Yes” because I know my life would be drastically different if it weren’t for Dr. L. I no longer see him on a regular basis but he’s always been there if I needed his advice, like the decision to have Botox injections or what to do when I wouldn’t feel my left arm for a week during college. But in the last few years I’ve really started to question and think about what my life might’ve looked like if I hadn’t had an SDR. I don’t hold any bad feelings towards anyone but I do wonder, especially since my SDR was more extensive (from L1-S2) than what’s being done now.

I wouldn’t be as independent as I am now without it. Yes, I use a wheelchair on occasion for mobility but I probably would be a full time wheelchair user without it, and would probably need to rely on others more for care. In my opinion people focus too much on the ability to walk after SDR. Walking in itself does not make a life more meaningful. As I’ve said before and I’ll say it again, using a wheelchair has opened up my world more than it would be if I used crutches or used no mobility aids at all.

So there you have it, my SDR experience decades after the fact, but if I’ve missed something you’re curious about let me know.

A Tale Of 10 Toes

I, like most people, assume have 10 toes.

I, however, don’t know I have 10 toes unless I’m looking at them.

This is for two reasons; I have horrible Peripheral vision and low depth perception. I literally cannot see my feet in front of my face. I’ve also had a Selective Dorsal Rhizotomy (SDR) from L1-S2, so I do not have full sensation and/or movement from L1-S2.

At one point I was able to move my toes at will, or as much as possible as someone with CP can. However it was so long ago I have no memory of ever being able to do so.

I few weeks ago (or maybe it’s a month by now) my PT wanted me to try doing Monster Walks. I thought he was insane for suggesting it but I relented and demanded that the exercise be modified.

Placing the band above my knees gave me a fighting chance of not falling on my face after two seconds. In fact I made it one lap around the gym, with support (aka fall prevention) from my PT (and no I have not walked backward, nor do I ever plan to, ever).

I left PT shocked that I was able to do the same exercise I’ve seen countless others do over the past year with practically no difficultly (considering how things could’ve gone).

And then I went to bed, and tried to sleep.

Nerve pain kept me awake for hours.

You know that buzzing noise that comes from the lights in old school gyms? That’s what my legs felt like; a constant flow of electricity running through my legs.

It’s happened before due to different reasons but it’s never fun. Also it always seems to happen after midnight and last for hours (aka prime sleeping time).

It’s painful, although not as painful as spasms, but mostly it’s annoying because I just have to wait for it to go away.

I realized I had two choices: 1) Battle through the nerve pain hoping for some sort of breakthrough or 2) Quit.

The later was really tempting, but given that I wasn’t having spasms and nerve pain simultaneously I went for the 1st option (with the support of my PT).

After a few sessions of monster walks I realized I could feel my 1st & 5th (the big toe & little toe) toes on each foot.

Then I could feel the 1st, 2nd, 4th & 5th toes on one foot and the 1st, 3rd & 5th toes on the other foot. It seems unbelievable and in a way it is, but it’s also annoying.

I didn’t realize how often a bang my toes into things and drop things on my feet without a second thought. Nor did I realize how often I trip over my own toes by rolling them under my foot and then taking a step.

I know what you’re thinking (probably), how is it possible for someone to regain sensation after almost 30 years? I don’t know.

I’m not sure anyone knows (but if you know please tell me).

Will I regain sensation in my remaining toes? I don’t know.

Will I be able to move any or all of my toes at will at some point? I don’t know that either.

At this point I’d settle for not walking into things, or over my own toes, dropping things on them, or scrapping them up (which has happened a lot lately).

I have 10 toes (well 7 confirmed); now I actually know it.