Hear My Cry

I devote the month of March to posts about Cerebral Palsy awareness, since March is Cerebral Palsy awareness month & I have Cerebral Palsy it makes sense.

There’s only one problem.

I have no idea what to write about.

No.

Idea.

At.

All.

Part of the problem is that I’ve written a fair amount about Cerebral Palsy already.

There isn’t an endless well of ideas to draw from, contrary to what many writing teaching and consultants will tell you.

It’s almost February, which means it’s almost March, so I need to get working.

I have a few options, like repost previously published material; but been there done that, will probably keep doing it on occasion.

I try updating material that I’ve already published on the off chance I’ve changed my thoughts and opinions, but that seems unlikely for a few reasons.

I troll the internet for ideas, but most blogs I’ve followed for ideas have long been abandoned for one reason or another, and I’ve probably drained them for ideas already.

I compile some guest posts, I’ve done it before so it’s not completely out of the question, but I’m not the biggest fan of a marathon of material not written by me on something that belongs to me. I would need to vet people and posts, something that takes time and energy, possibly more than if I just wrote for myself.

And the option I like most of all, I open up the floor, meaning I take suggestions.

So, I’m taking suggestions, answering questions, welcoming the idea of potential contributors, and anything else.

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International Day Of Acceptance

IDoA

When I started gaining attention for being an “adult with special needs” (seriously that’s what I’ve been called, more than one should), I spent time reading other blogs, mainly seeing if there were any common myths out there that needed to be debunked (not many worth debunking, for the record).

I noticed that a few people, mostly CP moms (as in moms who have kids who have CP), would mention something called 3E Love. Curiosity got the best of me so I checked out 3E Love for myself.

I bought my 1st wheelchair heart tee shirt (& sweatpants) at my first Abilities Expo. I LOVE the sweatpants. I wonder how I ever traveled without them.

I bought my dad his first shirt before his first Abilities Expo, and did the same for my cousin (it’s become a tradition I guess).

Several people in my life have 3E Love products; my dad even uses a 3E Love sicker to cover up a ding on his car.

I was able to hear Stevie (also known as Annie’s brother) share the story of 3E Love & speak to him personally a few times.

I never had the opportunity to meet Annie but I have a feeling I would’ve liked her based on what I know about her. Our shared skill of using kitchen tools as accessibility aids notwithstanding, I’m pretty sure she was an awesome person to know.

3E Love & the Wheelchair Heart were created by Annie (also known as Stevie’s sister).

wheelieheart

Stevie & his family started the International Day of Acceptance as a way of remembering Annie.

Join in the movement of acceptance.

*A similar version of this post first appeared on an old blog on January 20, 2014 & January 20, 2017

When I Grew Up

I don’t think I can come up with the full list of things I wanted to be when I grew up. So obviously none of the have panned out. However, I’m still waiting to “feel grown up,” never mind actually be grown up, so something could pan out eventually.

There was that time that my high school guidance counselor assumed that I would become a nurse because my mother’s a nurse. My mother then asked the guidance counselor if she had ever even met me before this one meeting, because if she knew anything she knew I would never be a nurse.

Point: Mom

Then there was that one time I was reviewing my health history with a nurse practitioner when he jokingly asked why I never considered become a physical therapist, my answer was “because I wanted to learn something new,” obviously.

I think I’ve had similar goals for why I wanted to be whatever I wanted to be at any given time.

I wanted to make a difference in people’s lives and maybe help them see things a little differently.

It’s hard to say if I’ve achieved this goal but I’m working on it.

I’ve realized I spent a lot of time (probably far too much) trying to be something I’m not. It wasn’t that obvious, it was certainly subtle from my prospective, but with each change I’ve made I feel like I’m getting closer to what I’m supposed to be as grown up.

The funny thing is, if you have a weird sense of humor, I feel like who I’m meant to be as a grownup has been following me around for quite a while just waiting for me to turn around and embrace it.

So, what did I want to be when I grew up?

If you can think of it it’s probably something I thought I wanted to do for at least 5 minutes. None of it has panned out as of yet, somewhat thankfully I admit.

And let’s get real for a minute, I have CP I can’t just have any job I wanted (actually that applies for everyone regardless of ability). So, there were countless things I wanted to be when I grew up that I knew would never happen, so let’s all be thankful I was never interested in Ballet, for example.

I did want to be an Olympian. That was one of the few things I convinced myself I could do, even with CP. I just figured I’d automatically be one of those heartwarming human-interest stories you see between events and commercials.

This was before being rejected from even trying out for the swim team & before I knew there was this thing called the Paralympics for athletes with a variety of disabilities. I don’t want to close the door on my dreams of Olympic glory, but it may be a little late to make a run for Rio (and I’ll probably be too old for Tokyo?)

When it comes down to it I wanted to make an impact on people’s lives. I wanted to make them see things differently or think of something they’ve never thought of before. I never wanted to be someone’s inspiration, but if that happened along the way who am I to disagree.

Now all I have to do is grow up

*A similar version of this post was published on November 21, 2014

Why I: Am Choosing The Back Burner

I’ve been joking for a while that anyone who’s actually following my blog is watching its slow demise.

Honestly, I feel like I’m stringing people along instead of just making a decision (NOTE: if my intuition is correct tell me, especially if you have any strong opinions either way).

Here’s the truth, I’m really enjoying school. Like, if I have any free time at all I want to spend time working on assignments, at least 90% of the time anyway. Why bother putting off “little” assignments that you can get done pretty easily, if you had the time.

The exception being major papers, midterms, and finals, I’m not that far gone. And does anyone really look forward to that stuff?

If it were up to me I’d go to school full time and continue to freelance, because that’s been awesome too. Plus, my advisor, professors, and formation director are fully aware of my goals and more than ready and willing to support my simultaneous pursuits.

It’s a great ideal but it’s just that, my ideal. I have to work in order to make the rest of this work.

It’s a lot to fit in in any given day, but I’ve been able to make it work. In fact, my time management skills have improved greatly (although there is still plenty of room left to grow). So it’s not that I don’t have the time. I could make the time for something if I made it more of a priority.

Here’s the thing, my blog and who I am as a blogger needs to shift or maybe transition would be a better word. I’ve shifted topics from here to there and back again, so that’s not new to me. But I’m not getting the feeling that “Keep Calm & Blog On” is the approach I should take here.

I don’t want to stop blogging. That doesn’t feel right either. I would just be leaving a bigger gap where I’ve tried to fill a void. Nor do I want to overfill the void by telling you everything that’s been filling up my life and how it relates to having CP. I’d rather share the soapbox, if I have to stand on one at all.

So, I need to figure out what I’m doing here and more importantly why, at least when it comes to blogging.

Ideally, and I think what I’m heading towards, is more of an integration of all of my projects. Just how to go about that, if that’s really what’s meant to happen, is the challenge here.

But there’s one thing I have to do first, step back and think.

I’m choosing the back burner, because it feels right.

*A similar version of this post was published on December 30, 2014

On Being An Activist, Not An Inspiration

Typically I write and schedule my posts ahead of time. For someone with some of the worst time management skills on Earth, coupled with ADD, it’s just a better system (and why I can’t manage to post every day without some sort of help).

When the news broke that Stella Young died unexpectedly I changed my plans.

She wrote a letter to her 80 year old self, that people shared all over the place. I read it at my earliest opportunity, which happened to be the night I heard of her death. (I’ll spare you my philosophical and emotional thoughts on that).

Although I never got the chance to know Stella personally I feel a sense of loss with her death. I don’t want to go all, “We few, we happy few, we band of brothers,” but it wouldn’t be the biggest stretch of the imagination since the bonds of the disability community seem to run deeper than the everyday population.

There’s this thing that happens when you’re asked to give a speech, at least if you’re anything like me, you spend more time watching other people give speeches (and thanks to the interwebs this can go nonstop for days on end). You don’t really listen to the speeches either; instead you’re watching their posture, movements, what they do with their hands. Seriously, what to do with my hands always puzzles me.

I really wanted to find wheelchair (or crutches, walker, cane) users giving speeches & how they handled their time in the spotlight. What do they do with their hands? What’s their mic set up? Do they use note cards or have notes on their computer from behind a podium?

And I found Stella.

I watched how she presented herself AND her topic.

She made me laugh, not just because she brought humor to her talk but because there are some experiences that everyone with a physical disability seems to share, and if you don’t laugh about it the inner angry cripple isn’t going to become the outer angry cripple.

She’s also the one who introduced me to inspirational porn.

It’s also nice to see someone else out there who has a similar outlook on life and similar thought process, and has a bigger platform no less.

One of my favorite quotes from Stella is this, “I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people.”

I don’t like living in a world where working incredibly hard to regain your physical baseline is seen miraculous. It’s not fair to the person with a disability or the one(s) claiming miracle, not to mention a big fat lie.

Stella wouldn’t like it if I ended this by calling her one of my inspirations, so I’m not going to do that. She’s not an inspiration, but she’s shown so many how to advocate and be an activist. That cannot be overlooked.

I read that Stella considered herself to be an atheist ever since she heard that there was only a stairway to heaven. So wherever she is now, if anywhere, I hope it’s universally designed I know many of you out there have no idea who Stella Young is so I wanted to give you a chance to get to know her the same way I did.

17 Things Stella Young Wanted You To Know

How Stella Young Wanted To Be Remembered:’Strong and fierce, not sweet or fragile’

*A similar version of this post was published on December 10, 2014

Labeled

The concept of labeling can be a complicated debate especially when you have a disability. For a long time, I avoided being labeled like the plague, partly because I wanted to avoid any discussion of my disability at all costs. My thoughts on labeling have changed a bit since then (as you’ll see from the rest of this post). All labels have their place but I wonder if we’ve gone too far in both directions, yes at the same time, meaning we want to label everything and we avoid labeling so much that it’s almost ridiculous, and I wonder if it’s becoming dangerous.

_____________________________________

Do you ever find yourself being shoved into a label that just doesn’t fit?

Do you want the short answer to that question or the long one?
The short answer is…….
Y-E-S!

The long answer goes something like this……
Here’s just a list of labels that have been applied to me:
Cerebral Palsy, Palsified, CP-er (which I hate), Premature, Special Needs, Special Ed, Disabled, Handicapped, Crippled, Dyslexic, Stupid, Slow, Dumb, Learning Disabled,
Different thinker, Adapter, Creative, Problem solver, Easily distracted, Attention Deficit Disorder, Bouncer-backer, Inspiration, Survivor, Thriver, Independent, Stubborn, Pigheaded, Closed off, Loaner, Anti-Social, Social Butterfly, Fast talker, Quiet, Courageous, Deep thinker, Over emotional, Latch-key kid, Damaged goods, Teacher,
Motivation, Friend, Enemy, Nice, Hard ass, Sweet, Sassy, Tree hugger, Hippy, Weird,
Conservative, Driven, Closed minded, Free thinker, Catholic, Addict, Artistic, Heathen,
Atheist, Non denominational, Christian, Miracle, Scattered, Fighter, Free spirit, “Mom,” Flighty, Lover, Hater, Lazy, Boring, Amazing, Spastic, Spaz, Athlete, Introvert, Extravert, Warm hearted, Cold blooded, Caring, Mess, Demented, Retarded, Big mouth, Planner, Over reactor, Disorganized, Volunteer, Recruiter, Person
…….and on and on and on

These are just a few labels I’ve been given in my lifetime. Do I feel like any of them fit me? Not really. No. None of them “fit” me. I feel like I get forced into at least one of these labels at least once a day. Other people have given them to me and force me into them, but sometimes I force myself into them for lack of knowing what else to do. No matter how much I don’t like labels they do help make things easier. I find myself relying on them in new situations or when I find myself too frustrated to be able to explain things to the best of my ability.

My favorite saying for a long time was “Label jars, not people.” It’s still a favorite but I don’t rely on it for wisdom as much as I use to. It was a title I used for an old blog, now I rarely think about it.

Even though it is a statement I rarely use anymore I still believe in it.

Things need labels.
People do not.
People are so much more than any label can describe.
If you need to label someone than you’re showing off your insecurities.
If you want to label someone label yourself, just know you’re selling yourself short by doing so.

*A similar version of this post was published on November 4, 2008

SDR: Thoughts 30 Years Later

I kept telling my family that I couldn’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 couldn’t wait because I’m 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.

Here are some basics:

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. My room had wallpaper with clowns on it, which is probably one reason why I fear clowns, practically clowns in hospitals.

 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.”

It was done at local hospital by a surgeon who had just arrived. I was his first patient. We didn’t go anywhere else because it was the best fit for me and my family.

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

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 it wasn’t as intense as PT. 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.

I remember the first time I stood up and saying that my legs felt like Jell-O would be a bit of an understatement.

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?

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.

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’d like to say “Yes” because I know my life would be drastically different. 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. 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.

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 similar version of this post was published on March 7, 2016

World CP Day

Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.

Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.

CP, formerly known as “Cerebral Paralysis,” was first identified by English surgeon William Little in 1860. Little raised the possibility of asphyxia during birth as a chief cause of the disorder. It was not until 1897 that Sigmund Freud, then a neurologist, suggested that a difficult birth was not the cause but rather only a symptom of other effects on fetal development. Research conducted during the 1980s by the National Institute of Neurological Disorders and Stroke (NINDS) suggested that only a small number of cases of CP are caused by lack of oxygen during birth.

Types Of CP:
Ataxic
Athetoid/dyskinetic
Hypotonic
Spastic

All types of cerebral palsy are characterized by abnormal muscle tone, reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticities, spasms, other involuntary movements (e.g. facial gestures), unsteady gait, problems with balance, and/or soft tissue findings consisting largely of decreased muscle mass. Scissor walking (where the knees come in and cross) and toe walking (which can contribute to a gait reminiscent of a marionette) are common among people with CP who are able to walk, but taken on the whole, CP symptomatology is very diverse. The effects of cerebral palsy fall on a continuum of motor dysfunction which may range from slight clumsiness at the mild end of the spectrum to impairments so severe that they render coordinated movement virtually impossible at the other end the spectrum.

CP is not a progressive disorder (meaning the brain damage neither improves nor worsens), but the symptoms can become more severe over time due to subdural damage. A person with the disorder may improve somewhat during childhood if he or she receives extensive care from specialists, but once bones and musculature become more established, orthopedic surgery may be required for fundamental improvement. People who have CP tend to develop arthritis at a younger age than normal because of the pressure placed on joints by excessively toned and stiff muscles.
(information taken from Wikipedia and reorganized/edited by me)

Why am I telling you all of this?

Because there is no cure for CP.

But I have to be honest that’s quite fine with me, most days anyway.

That doesn’t mean there can’t be a collective of sorts. Stats are one thing.

Personal stories are another, and even better.

Which is why I collected all the personal stories I could find and put them in one place.

If you have a CP blog, have one that you like, or just know one, leave a comment with the URL

Remembering Jack

From a school in Copper Valley, to a legacy of thousands.

As the story goes a group of Jesuits and some of their Sister friends went to Copper Valley to open a school for Native Alaskan children.

60 years later the legacy continues to make a world of difference.

One of the Jesuits from that Copper Valley School decided to walk to Bethlehem in the name of peace.

He and his fellow pilgrims arrived in Jesus’ birthplace on Christmas Eve, or so the legend goes.

(Did you think I meant the Bethlehem, Pennsylvania? So do most people when they hear this story)

That same Jesuit joined me in a buffet line one spring in Seattle and invited me (and my community) to a meal at the local Jesuit residence.

Just like people do every day, except this was only the 2nd time I’ve crossed paths with this Jesuit. Typically, this kind of gesture, although nice, would seem odd to me.

Except for the fact that this Jesuit seemed to possess a level of generosity and kindness of spirit that I hadn’t encountered before, and haven’t since. I knew he meant it.

This kind Jesuit with a boundless spirit and unforgettable sense of humor has touched many, a goal many reach for but very few achieve.

People thought he was nuts. I’m sure there were times he though his own ideas were nuts too. But he went for them anyway.

I laugh to myself whenever I wonder if I’m about to embark on something people think is nuts. Jack would probably be one of those people too, the only difference is, He’d tell you you’re nuts with a smile on his face, then tell you to go for it.

What the Lord can do with a restless spirit is truly amazing, and only something the Lord can do.

I have been truly blessed by his example.

fr-jack-greeting-card

Father Jack Morris S.J.
1927-2012

“Our human task, if you like, is to not flee from the ill-being but to transform it.”
–Jack Morris, June 2012

*A similar version of this post was written on September 28, 2016

Review Session

I’ve been riffling through my past writings, for various reasons. I can’t say it’s been all fun rereading everything but it has been interesting.

——————————-

Two years ago I was pre-surgery*

One year ago I was post 1 round of Botox*

*I did indeed have to search the archives to remember this

This year the MDs & Ph.D.s are pretty much hands off.

Progress indeed.

Things aren’t prefect.

But a CP body isn’t your typical definition of perfect.

“It doesn’t get easier or harder. It just gets different.”

The idealistic picture I had in my mind two years ago is a distant memory. As in so distant I barely remember the picture, other than I had one.

The real picture is coming into focus.

I’m sure there are things that could use fixing. In fact I know there are. They’ve just been put in the “wait and see” category, and it looks like they’ll be staying there.

Do I want them fixed?
Of course.
But I don’t know how much difference it’ll make overall.

Plus I’m in pretty awesome physical shape.
Going in for more work would mean “tearing down” my hard work.

That’s the biggest negative for me.
Further improvement would come at a cost.

I’m not 100% with how things are.
I’ve made that pretty clear to a lot of people.

But who is really, truly, honestly happy with themselves 100%?

Even if I can still see room for improvement that doesn’t mean I have to bow to the surgical gods for it.

A big revelation for me I admit.

I can manage my own trajectory.
Modern medicine will always be there.

*A similar version of this post was written on September 2, 2011