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).

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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

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12 Days Of Christmas, Kinda

There are so many reasons why I hate the start of the Christmas season, at least the commercial version of it. I’m not sure when it started but I was ecstatic in college when I was given an Advent calendar that included the Christmas Octave.

My cousin says it’s because I know too much, that may be the case now, but back then I think it was just an annoyance.

I hate having to buy Halloween decorations in early September, that Christmas movies run 24/7 on some TV stations from October 1st through New Year’s, and the supposed “war on Christmas, among other things.

I look for anything for an escape, at least until Gaudete Sunday, so imagine how I felt when my coach told the group about the “12 sets of Christmas” challenge.

I’ve heard stories about swim practices during holiday breaks, “Grinch week” or “hell week” are common terms, although mostly in younger groups. Usually time around the holidays is devoted to fun games that happen to double as technique work or some sort of cross training, so I thought the sets would be like that.

No.

It was going to be unpleasant, to the point where I would probably hate it.

I tried making the argument that it was Advent and not Christmas, at least at the time. I threw out the “Catholic card,” knowing it wouldn’t get very far but it was worth a try. It wasn’t totally bailing on the challenge, just putting it off. Anything that would buy me a few more days without time trials makes for a better practice.

However, the “12 Sets of Christmas” was to be completed in December. Thus, covering both the Advent and Christmas seasons, more or less. So even if my argument had held up it wouldn’t have been for long.

It did get me to focus less on Christmas and more on what I was actually doing, which is a good thing, and an essential for a 400-yard Individual Medley, for time, among other things associated with swimming well, or at least well-ish.

I survived Advent and Christmas, and the associated swim sets, actually, I think the swim sets helped take the edge off the intensity of the holiday season.

Although I think it’s weird that the Valentines paraphernalia made an appearance during Advent.

One Word: 2018

Build. Chance. Providence. Transition. Endurance.

Now?

Flux.

Why?

It just feels right.

It sounds better than “blank”, which is really how I feel right now.

I was going to class it up with “transition,” but been there, done that.

This time feels less formal than a transition, like taking a deck of cards and throwing it in the air kind of formal (as in there’s no order to it, at all).

I’m not completely lost, but things are more or less wide open in terms of my next steps.

It’s not like I wake up every morning wondering what to do with myself, at least not every morning.

It’s more of a discernment thing.

One of my most favorite things to do.

(Not really)

I’m not on the verge of existential crisis or anything, at least not yet, but it can easily go that way, based on past performances.

I’m not in any particular predicament either, but again, it could easily go that way.

I do have a tendency to misjudge situations, like staying in temporary jobs too long or not staying in a position long enough to make it a solid life decision.

Do you see why I chose “flux” instead of “transition” (again) this year?

Similar situation, but far less structured, less direction, more questions that will need answering, at some point.

(I’d like it to be sooner rather than later, but God tends to have other ideas)

One Word: 2017 Review

Endurance

There were a few obvious reasons:

-Attempting to become more of a distance swimmer, because although a 50m doesn’t seem like a lot of work it can be just as hard as swimming a mile. I need the endurance, literally.

*I’ve been focusing on 100s & 200s. It requires endurance but if I pace myself I don’t find them to be as difficult as 50s, mentally or physically.

-Although I’ve made it through the bulk of my degree program I’m really just getting to the hard stuff. I won’t be pushed out of my comfort zone I’ll be blasted out of it, no matter how much I prepare.

*I survived, give or take a mental breakdown. Enough said.

The not so obvious reasons were:

-Starting a search that would lead to an actual career.

*Can we talk about how unfun the searching and applying processes are? But I’m making some progress, it’s better than nothing.

-Basically become better at “adulating,” because I’m (hopefully) going to be an adult for a longer period of time than I was a kid.

*What does “acting like an adult” really mean anyway? How does one measure how “adult” they are?

-The older I get, even though I’m not that old, the more energy I need to get things done. I’m not just talking about physical energy but mental and emotional energy, probably even more so than the physical aspects.

*I love naps. The older I get the more I like them. Ironic considering, I was that kid that never napped in daycare or pre-school. I appreciate being able to go to bed (and fall asleep) early. I’m not envious of people who get to wind down their day at 9pm.

-Developing endurance will give me the opportunity to have more time to devote to one thing at a time, hopefully.

*I don’t have the slightest clue what I meant by that. I’m not sure I’m wired in such a manner than would make that achievable. It is a nice thought though, I’ll give myself that much.

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

Normal Is Nice

Fall means a season of follow ups, and usually a mix of emotions.

The emotions are still there, but I’ll get to that later, or not.

The follow ups are still there, and they will be for the foreseeable future, but they’re different.

I was sitting in an exam room waiting, actually I was staring at the sink, when I thought of a poem.

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Yes, I was waiting a long time. Yes, I do get philosophical the longer I wait.

I remembered waiting to be told I had healed enough that I could stand up, and then feeling pain shoot up my legs as they took on my body weight. It was pain, the very reason why I put myself though all of this, but it was different pain, and I was happy about it.

As the weeks of rehab turned into months my feelings towards standing went from happiness to anger, as happened in every stage of my recovery process.

Every follow up I’d wait, and wish someone would find something that would make me better, a more improved version, faster.

That never happened, at least not yet. And no one ever declared me “recovered,” not officially, that came with some self-acceptance.

I sat in the exam room, again, but with a different expectation.

The expectation of normal.

“Normal is nice,” I kept thinking.

And it was, the follow up went as I expected, and I wasn’t upset or overly happy over it.

It was normal, and it felt nice, to be OK with this (not so) new phase of my life.

Regardless of how you feel about standing, normal is a nice place to be.

Defining normal, that’s the hard part.

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