You Need Legs To Run

For some reason I’ve found myself in the company of runners (at least in the last decade and a half). Occasionally someone would make a comment about my ability (or lack of) to run and I’d brush it off with an accompanying reason, like, “I’m not interested enough to invest that kind of money in a track chair, especially since they’re not covered by insurance.” It wasn’t a lie, but it wasn’t exactly the truth either.

All of the questions/comments were innocent but not all were eloquent, for example, “Blind people run marathons,”

Because blindness and Cerebral Palsy are right next to each other on the wide spectrum of disabilities…..

“You need legs to run. That’s basically my weakest body part,” was the only remotely sensible thing I could think to say (but “ARE YOU OUT OF YOUR EVER LOVING MIND” almost came out instead)

Now I know you don’t really need legs to complete a marathon. Tatyana McFadden has proven that again and again and probably will again. But running using my legs were the context of the conversation so I went with it.

It’s the less than eloquent comments that make me think, am I doing too good of a job assimilating into able-bodied society? (I’m sure there’s a more eloquent way to state that, but I’m just going with my 1st instinct here).

I’ve always thought I wanted people to see past my disability, but do I really? Does seeing past disability mean that it doesn’t exist? If it does I don’t want what I always thought I wanted.

I used to think it was a compliment when someone told me they didn’t see my disability. These days I have 2nd thoughts.

I want to be seen as me “warts” and all; although I don’t see my disability as a “wart” (for the record).

Trying to not see someone’s disability, when it’s clearly visible, seems like a noble goal but it’s far from realistic.

If I’m going to go out with a group of friends “seeing past” my physical limitations can prove disastrous, both with and without my wheelchair.

The goal, for lack of a better word, for anyone and everyone is to be seen as who they are; not ignore or give any more attention to any part of themselves over another.

So are those with disabilities doing a bad job representing themselves if people forget that they have a disability? Is the able-bodied community overcompensating by telling people with disabilities that they don’t see their disabilities?

You may not need legs to run but you need to be seen as your whole authentic self in order to be successful.

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The Practice Of Unremembering

Anyone who knows me knows that fall is probably my least favorite season (yes, I’d even take a snownado before saying yes to fall). The pumpkin spice craze is enough for me to give the season two thumbs down.

It’s been my least favorite season for as long as I can remember, but in the last few years it’s gotten worse. I had surgery in the fall, which was a positive, but many days recovery literally meant not leaving the house (or even bed).

1 year, 1 month, and 1 day after surgery I took my first independent steps; a good day, but a long time coming (so not as great as one might think).

Then people started to die.

I made a conscious effort to remember all these important days and it’s draining as hell. I’m not the biggest fan of crying, even in private, and there I’d be sobbing as soon as I walked in the door.

I was so concerned that I would forget something so “important” that I was slowly destroying myself emotionally.

I thought this year would be different.

Then a close family friend of close family friends died. Someone I barely knew when I knew them, yet I spent many nights reading comments online and looking for memorials.

I was trying to remember someone I barely knew.

I realized I had to change my thinking or I was going to drive myself crazy, perhaps literally.

I need to learn the practice of unremembering. It’s OK to remember, but to attach it to a specific date forever means (for me) that I’m living between sad moments to other sad moments, that somehow I can’t allow myself to be happy just because something else came before and took that spot on the calendar.

Fall may never become my favorite season but maybe I can make things a little easier on myself.

Do you have any hang-ups that you need to let go of?

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.

World CP Day

Every year I struggle when World CP Day comes along. I thought I’d skip it this year, but when I noticed it fell on Wednesday (the day I typically post) I figured not writing about it would be weirder, at least this time.

To be clear I have no problem with World CP Day in terms of playing a big part in the achievement of a goal. I want more people to know about Cerebral Palsy so being against World CP Day would be counterproductive.

But I do find it to be counterproductive, not to mention confusing, that World CP is in the fall and Cerebral Palsy Awareness Month is in March. The CP community needs more community, having a “CP Day” & “CP Month” feels like being forced to choose between friends (or overkill having to commemorate both).

So what is one to do?

Jump on every awareness bandwagon that comes by, at least for now.

So what do I write when I’m hesitant to write?

Before going to Atlanta for the CNMC I was thinking of ways to expand my platform. However after hearing Greg Willits’ keynote I realized (more like I was hit over the head) that I’m just not in the position to branch out right now. I have the plans. It’s just not the time to execute those plans. Therefore I’m just going to keep jumping on the community bandwagons, in my own way.

I’ve noticed that a lot of CP Vloggers have done a “CP Tag.” Starting a Vlog or even just a few videos was something I was considering. But when you consider my limited track record with videos is roughly 1 hour of recording for 1 minute of usable footage any recording just isn’t in the cards right now. So you’re just going to have to settle for the written version.

CP Tag
Tag Questions

1) What kind of CP do you have?
I have Spastic Diplegia Cerebral Palsy, which means my CP effects my lower limbs, aka legs.

2) How did you get CP?
I’m not exactly sure; I don’t know if anyone could be, because if we knew the cause wouldn’t there be a cure? I was born prematurely (32 weeks) so there’s a good chance that that played a role.

3) How did you feel about a growing up?
Truthfully I can’t remember. Does that make me old? I knew I was different from everyone else growing up, but the words “Cerebral Palsy” were rarely mentioned. There were times when I didn’t like it and there were times when I didn’t mind it at all, usually it revolved around what class I was being pulled out of for in-school PT and/or OT. My parents (and the rest of my family) tried to keep my life as normal as possible so I wasn’t given much of a chance to feel anything other than normal.

4) How has CP impacted your life (good and bad)?
I can’t really answer this question since I have nothing to compare to on a personal level.

However CP impacted my life negatively because I was teased endlessly throughout school, particularly middle school. What I didn’t realize then, but I now do, is that I was the easiest to pick on because I was the one who was “most different.” I was perceived to be the “weakest” of the herd, therefore the easiest target. It sucked, but I’ve tried to put that behind me, and what I haven’t I’ve tried to use for positive purposes.

CP has impacted my life for the good because I’ve been given opportunities I wouldn’t have if I didn’t have CP. I wouldn’t have the same career, and certainly not the same vocation.

5) Do you ever think about your life without Cerebral Palsy?
I do, but not in the way people might think. When I find myself in certain situations, like after giving a talk or attending a conference, I catch myself thinking, I wouldn’t be here if I didn’t have Cerebral Palsy, so that’s pretty cool.

6) How was schooling with Cerebral Palsy?
I’ve had horrible and amazing experiences in terms of schooling with Cerebral Palsy, bullying aside. I was in a special education classroom in pre-school (ages 3-4) and then moved to mainstream classrooms (with an aide) for elementary school. I ditched the aide around 1st or 2nd grade (I told her to get lost). I was in public school until 5th grade. I was in private (Catholic) school from 5th-8th grade and received no services or accommodations during that time.

I attended public high school with no additional services or accommodations, other than gym class, because the school is so small; in fact I often ignored what the administration put in place for me and did my own thing with no objections (and the accommodation for gym was more for my safety related to size rather than ability.

I attended 1 year of public university with one accommodation (a room on a lower floor), which was a big fail, but none of that was on my part what so ever. My last 3 years were spent at a private university with the same housing accommodation and accommodations for note taking. I didn’t think I needed any accommodations at all but thanks to a great relationship with the staff at the Disability Student Services offices I was willing to give their suggestions a try and my college experience was so much better for it.

Now I attend a private post-grad institution through an online program (although I am required to be on campus for part of the summer). I have no accommodations and I don’t foresee needing any in the future (but you never know). Thankfully the school is incredibly small so the community is incredibly accessible and supportive when/if needed by anyone.

7) How has your disability changed throughout your life?
Cerebral Palsy itself does not change over time (or so the people with medical degrees say). However it does change how it affects your life, at least from my experience.

People with CP tend to age more quickly than our able-bodied counterparts since our muscles work harder (I’ve heard somewhere around 3-5 times harder). We’re also more likely to develop arthritis or osteopenia.

I’ve had less surgery as an adult than I did as a kid but I think that’s mainly because there aren’t a lot of studies on the effectiveness of surgery on older individuals with CP. Also a lot of the surgery I had as a kid was to help direct or redirect the growth process. Let’s not forget that medicine/science has developed a lot in my lifetime so that also plays a role I’m sure.

I can’t exactly say when things changed, nor can I explain how each time. But I can tell you that (for me) when some things get worse other things get better. It doesn’t make any sense but that’s just how things are for me.

8) How will things change for people with disabilities?
I can answer this in two ways, the way I’d like things to change or the way I think things are going.

I think things are changing for people with disabilities, obviously, but I wonder if things are going in a positive (or “right”) direction. The disability community is getting more exposure and being included in mainstream society. There’s rarely a day that goes by that I don’t see an able-bodied person sharing a disability related news item on social media. It’s exposure but is it always good exposure?

For example, the “in disability” right now seems to be Down’s syndrome (particularly during Fashion Week) but every article about someone with DS seems to have the same tone. They’re “beautiful,” “always smiling” and have a “bubbly personality,” but not much else.

What does that say to other people, in particular children, with other disabilities? That they’re not beautiful enough? Or that their personalities aren’t as “bubbly” so people won’t give them the time of day?

Cerebral Palsy isn’t much different when it comes to getting media attention. We all seem to “suffer,” “overcome obstacles.” We sometimes are classified as having a “disease,” which couldn’t be more wrong.

All stories attempt to highlight individuals, however so many of them say nearly the same thing.

Yes, things are changing for people with disabilities and a lot of the change is positive but I fear that much of it is venturing into “inspirational porn” territory and that isn’t the kind of change the disability community is looking for, at least I’m not.

9) Do you believe in God? Does that help you deal with having CP?
Yes I do. I wouldn’t say my belief in God helps me deal with having CP directly, but it does play a role in how I live and see my life (much like having CP does)

10) If there was a pill or cure for CP would you take it?
No.

Well this post ended up being longer than I anticipated, oh well.