Cerebral Palsy Awareness Month: 2019 (Review)

Cerebral Palsy awareness month ends this weekend, which means today is the last day for my month-long marathon of posts. I always say that it gets harder and harder to come up with topics each year, and this year was no exception.

However, this year I managed to stir up more controversy than usual. It’s not something I intended on doing but I’m not 100% sorry for anything I’ve said either. So, I’m in a different position this year than I have been in years past. I’m happy to have a blogging break but I’m taking what I’ve learned this month and I’m going to use it in my future endeavors, in some fashion.

Rather than try and sun up the month with some grand conclusion I’m just going to outline all of the posts I’ve written this year and include some others.

As for next year, we’ll all just have to wait and see what happens.

2019 Posts:
Cerebral Palsy Awareness Month: 2019
That Thing About The Road To Hell
A Question About Questions
Spread The Word
End The Word
Back To Basics
Growing Up Disabled
Cerebral Palsy: Blogs
Cerebral Palsy: On Twitter
Cerebral Palsy: On Instagram
It’s Not Easy Being Green
Cerebral Palsy: Books
Cerebral Palsy & Aging In Community
Difference Is OK
Cerebral Palsy: Movies & TV
7 Questions: A Few Years Later
Cerebral Palsy Awareness Day
Poor Fortunate Souls
Chase Dreams, Change Dreams
Cerebral Palsy In The Future

(Previous posts)

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Chase Dreams, Change Dreams

When I was younger, I wanted to be an Olympic Swimmer. It never occurred to me that it was highly unlikely because I was slower than everyone in the pool every single time I was in a pool. I also had no idea the Paralympics existed, even then I think I would’ve still shot for the Olympics.

I quit swimming in my early teens, like most girls who stop showing an interest in sports, but I still watched it whenever I found it on TV.

I didn’t want to quit swimming but there only so much letdown a person can take, never mind a hormonal teenager, so I quit anyway and watched from the sidelines.

What I didn’t realize until I started swimming again is that it’s OK for to chase your dreams even when they’ve changed, to whatever degree.

It would have been awesome to make an Olympic (or Paralympic) team but it’s just as cool to be able to swim as well as I do at my age, which isn’t old overall, but up there for a competitive swimmer.

Plus, I now have actual goals, times, standards; things that are measurable, rather than a huge goal with no road map to get there (and people to help me get there, and sometimes they draw the map).

That may be the best part.

I’ve heard and read many stories about parents who feel like everything changed as soon as their child received a diagnosis. I have no personal experience with it, but I can guess what that might be like, but I want to push back on the idea that everything must change based on a diagnosis given on one day.

Life, regardless of disability or ability forces us to change.

How many of you have the dream job they envisioned when they were 5 or 6?

My guess is not many.

There’s nothing wrong with that. Life happens and you changed.

Please don’t put expectations on your child’s life before they’re born (or soon after).

Your life changes as soon as you become a parent, so I’ve been told, so it’s OK if your idea of the child you will parent changes too, because it probably will.

You are part of your child’s life, especially in the beginning. But eventually they’ll have their own thoughts and dreams for the future and you’ll probably have to negotiate how much of a say you’ll be able to have in their life, especially considering how much CP impacts their daily life.

One day does not determine whether or not dreams die or live to see another day, especially when it comes to the dreams of (or for) a disabled child. If one day does become the one determining factor then you’re probably selling yourself, and your child, short.

It’s OK to have dreams and to chase them with all you have in your control but it’s also OK to change your dreams and chase those just as intensely.

Growing Up Disabled

Some people don’t like to admit it but there’s a difference between how people treat people who were born disabled verses those who became disabled as a result of injury, age, luck, etc. (I won’t go into the differences. I just wanted to point it out for further context).

Since people are born with Cerebral Palsy it can create an interesting set of challenges. One being that people we grew up around get so used to us that it’s almost like they forget that we’re not able-bodied.

Because Cerebral Palsy is a brain injury that effects movement and coordination it also effects the day to day lives for those who live with it. It’s not something most people who have Cerebral Palsy consider on a daily basis, or even on an occasional basis, because it’s not like we’ve lived a previous life that we can compare our current one too.

I was the one who knew how long it took me to get to every one of my classes in college. If I left somewhere 2 minutes late to get to class, I knew I had a higher likelihood of being late than my classmates. Because I can’t “just walk faster,” to make up for lost time.

I’m the person that lays out their outfit for the next day (or longer) because I can’t just throw my clothes on and walk out the door. I’ve often gotten trapped in a pant leg or sleeve because of one wrong move. And the faster I move the more likely I am to get slowed down by the most basic thing.

And then there’s shoes, if you wear AFOs (or even just one) it’s not that easy to get your foot into a shoe. It’s something you get used to, to the point where you don’t really consider how long it takes you, unless you compare yourself to someone else’s ability to do the same task.

Then there are the times when friends are waiting for you, for what feels like forever, and you know that they’re waiting for just you.  Or even worse encourage you to “hurry up” because they’re excited to embark on your plans. Do I really have to explain (again) that I can’t “hurry up”?

Growing up disabled is an ongoing process, especially if you have Cerebral Palsy (or any other disability typically associated with children). It’s not just something you have to come to accept but your family and friends have to go through a similar process as well.

One Word (2018): Review

Would you believe that I’d forgotten my word for this year?

Rereading my original post from January wasn’t an eye opener as much as a reality check. I had no idea what was ahead of me this year but if you read it with the benefit of hindsight you may think I was slightly psychic.

Particularly when I said, 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).”

Specifics aren’t that important, especially considering I’m always looking for more topics to write about. So let’s just say this year has given me plenty of reasons to generate content, it’s just a matter of timing before the content gets created.

 However, when I read that I actually wrote,
“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.”

I had one of those “did I actually write that” moments.

I thought I sounded like a complete idiot, but that’s with the benefit of hindsight, if realizing your idiocy can in fact be a benefit.

I do wake up most mornings wondering what to do with myself. It wasn’t planned, and it’s not ideal but it is what it is. My time may be filling with meetings but that’s about it as far as structure goes. I don’t schedule the meetings, set the agenda, or work out the logistics (at least not yet), so I just have to show up, listen, and maybe put in a cent or two here and there.

Other than that, I wonder what I’m going to do with myself most days.

Given the benefit of hindsight I realize I go all in on things if the stars align. If they don’t then I struggle with focus and personal drive.

It’s there, but I have to be hooked in.

School was an easy thing to get hooked on, once I acclimated, if I wanted a degree, I had to earn it (and boy did I, on both counts).

Competitive swimming was another easy one. When it’s something you’ve wanted to do so long you can’t remember your first thought about it the “buy in” is a given. I’d be at the pool all day everyday if I could. However, being a competitor more nuanced you must train for it. Meaning you can’t just show up and swim. Having changed pools and workout groups I’ve discovered the “buy in” I have doesn’t work in the same way wherever I find myself training.

Then there’s the continuing need to keep building a career for myself. The hook keeps shifting. I need money to live and I need to be passionate about something. Those are two completely different hooks, at least at the moment, and I would like these two hooks to turn into one. If I’m being honest money isn’t always the best hook for me, it works, but in the short term, and being disabled is expensive so packing a bag and venturing off into the unknown like Eat. Pray. Love. or Wild isn’t an option. An Into The Light thing would be cool but I doubt anyone in my family would be down for that, for a variety of reasons.

I knew flux would be a good word for this past year because of the obvious unknowns, what I never factored into the equation when coming up with this word was just how many unknowns would come up in addition to the ones I knew about. My year of flux made for a long and frustrating year, so much so that I can’t wait to put the whole thing behind me.

November: A Review

November, the month when life was supposed to be spaced out. No back to back to back meetings in one day, meaning I’m at risk of falling asleep while on Z00m.

Turns out it doesn’t matter how few meetings I have via Z00m there’s still a good chance I’ll wish I could take a nap during the meeting. It doesn’t matter how interested I am in meeting topics. 20 minutes in and I’m struggling to not zone out.

I’m hoping my systems are just trying to recover from the chaos of the last year

I’m hoping that’s what it is, but the pessimist in me is saying that it’s not that simple.

My life is hardly ever that simple, so I don’t expect one of the hardest years of my life to be any different.

Somehow, I blinked, and the month was over, which has both good and bad points.

The holiday season is in full swing, which is usually a huge stresser for me, but this year I’m seeing it as being closer to the end of the holiday season.

More pessimism indeed.

Thank goodness I plan my gift purchasing early or else I’d just be browsing flash sales on Amaz0n during my restless, pretty-close-to-sleepless nights.

It’s been almost a year since I finished school and I’m thinking about going back, unbelievably. I’m not sure why if I’m being honest. I don’t want to spend all my free time writing papers or trying to find time to fit in reading a few pages of an utterly confusing text. But it gave me structure, guidelines, nonnegotiables, that’s the part I actually miss.

I can’t believe I miss saying, “I can’t. I have a paper to write.”

And then procrastinating on actually writing said paper(s).

I think I got too used to writing that I’ve lost what little social skills I had.

This month has brought an increase in debates and disagreements. I can’t say I regret anything that’s happened because I don’t regret anything I said or did that led to said disagreements. People have differing points of view and that’s OK.

What’s not OK with me and makes me want to keep an increasing distance from people is that people feel that because we don’t agree there must have been some misinterpretation, that something was read wrong, taken too personally, etc. Why can’t people disagree and have all parties involved be OK with it?

The year is coming to an end. I can’t wait for it. I can’t see what’s on the horizon either so things are bound to be interesting.

11 months down, one more to go.

Telling The Story You Have Ownership Of

During my Q&A in my capstone presentation I was given a piece of feedback that is still sticking to me, like flypaper.

“It would be nice if you incorporated more stories in your website like the ones you just shared with us.”

This wasn’t the 1st time this was suggested to me, so I responded appropriately (or what I felt was) inside I was like this:

inside-out-riley-eye-roll

I understand stories need to be told but if they don’t belong to you, you have little, if no right, to tell them.

Although I read it all the time, it makes me uncomfortable when stories are told about someone, a child, sibling, spouse, etc is being told without their consent. I wonder what they would think if they knew?

Mostly I wonder what a child will think about their parent telling everyone about their lives before they ever knew what they were doing.

I understand that stories need to be told, I won’t be a writer if I didn’t, but where’s the line?

I feel like anyone with a keyboard can call themselves a writer these days.

giphy

It sounds great, but what’s the real price tag?

At what point does sharing information become exploitation?

There’s an argument that true journalism is dead. I wonder if blogging has contributed to this. These days it seems like everyone has an agenda, meaning impartiality is gone.

I’m not saying that we shouldn’t tell stories. What I’m saying is that you should tell your story, especially when it comes to blogging. A child, for example, is under your care but when they grow up they’ll have to handle what you’ve said about them, because if it’s on the internet it’s quite possible that it won’t go away.

Tell the stories that you have full ownership of, yours.

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

Why I: Survived Bullies

I’ve been called an old soul a few times, as most recently as a few weeks ago. This makes me laugh because I am nothing of the sort, at least I don’t feel like it.

It’s true I use to play At@ri, jumped on the St@wberry Shortcake/C@re Bear bandwagon before my peers, and I counted down until the premiere of the new D@llas series because I’ve watched nearly all the episodes of the 80s series; but I think that hardly qualifies me as an “old soul.”

I’m my parents’ only child; however they come from big families themselves so my extended family is vast, yet fairly close.

My aunt grew up taking care of my dad, because that’s what kids in big families do. Their birthdays are a day apart (and a few years), which just adds to their closeness.

My childhood was filled with family events and play dates of every type, shape, and size available.

For the most part I was around boys my own age or people who were older (& I won’t be saying how much in case some of those people ever find this blog). Plus only children are pretty much “grown up” by 7 since they spend so much time around adults, or so I’ve heard.

It’s all ingredients for an interesting childhood. As Opr@h says, “It’s what I know for sure.”

(This also explains why the first time I lived with girls I was almost 20, and had a really hard time with it all. And the first time I moved into a house with people I barely knew I was not-that-secretly happy that one was a dude. It’s an absolute myth that girls are cleaner, at least when it comes to bathrooms…..especially when it comes to bathrooms)

I’ve been more or less “at the end of the line” when it comes to development (CP aside). When everyone’s babies became kids, I was the baby. When the kids became teenagers, I was the kid. When everyone had school years in the rearview mirror I was looking at colleges.

Let’s not forget I was the little kid for all the big kids to practice parent, and just flat out have fun with. Although there was one time during the flood of “how are things going at school” emails and calls when an older cousin was having something of a midlife crisis and decided to share it with me, when I was 18 and trying to not flunk out of school.

The funny thing is, if you want to call it that, was that I don’t ever remember telling anyone I was bullied (except for begging my parents to let me transfer schools). My all knowing babysitter knew, but her younger sisters went to the same school and had classrooms on the same floor, so she had an exclusive to my preteen/teen torture.

If I ever said anything no one ever made a big deal out of it. It would’ve made matters worse anyway. Instead I was almost always given advice that didn’t pertain to the moment, it was lifelong advice. It would’ve been nice to have someone go in an “have a talk” with one of the bullies but what I got instead ended up being exactly what I needed.

Proof that there’s a light at the end of the tunnel.

And some pretty great people I get to call my family.

I survived being bullied because I knew the “b!tchy girl phase” doesn’t live in everyone forever. I saw enough of it in my home life to look past it in my school life, and when I couldn’t someone managed to get some sense into me one way or another.

*A similar version of this post was written on September 26, 2012

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

Sarah Leaves

I used to have a fairly regimented holiday season, and then things changed.

Taking the advice of a former coworker, when things changed that I couldn’t control I changed what I could control.

I leave.

As my mother keeps telling people “around the holidays Sarah leaves”.

As in claw around the holidays throw my stuff in a suitcase and hit the road, or sky, whatever fits.

In fact, I happen to be typing this while sitting in the back of an RV which sounds far more romantic than it actually is. Being a nomad, even temporally, isn’t for wimps.

Why do I hit the road? Because left to my own devices the holidays are filled with memories of traditions that lasted for decades.  I get out of my long time comfort zone of traditions by not acknowledging any, if I can help it.

Where do I go? Well that depends, it helps that my family has spread out in the last few years. It’s not nearly as expensive and much more relaxed.

If I can get a reasonably priced ticket and a place to crash I’m gone.

This new tradition of non-tradition helps in some ways but other aspects are more difficult.

There’s always lack of sleep to contend with but at the same time it allows me a better chance to think about other things rather than what’s still lodged in my brain. For example, it’s hard to get lost in grief when you’re trying to catch your next flight located across the terminal that’s scheduled to leave in less than an hour.

I don’t travel as much as I used to and truth be told I find it to be increasingly stressful but I do make these “pilgrimages” every year I’m able to.

I still get criticism from people for it but I don’t care.

My sanity must come first when I feel depleted or else I just spin within myself and it just gets ugly.

I don’t really leave. I retreat and recharge by changing my surroundings. I get out of my own head and in some cases out of my own way.

There’s nothing wrong with wanting to take a break of some kind, before, after, or even during, the holidays. It’s overwhelming and overstimulating for a lot of people, self-included, naturally. However, it’s much more common to criticize those who acknowledge that they need a break. Someday it’ll be the other way around, as it should be.