September: A Recap

This is going to be an attempt at a recap of the past 30+ days. I say attempt because I’ll probably forget something or get the order of events wrong.

Blogging: I haven’t done much, obviously. I intended to make some sort of cutback, but I never made a solid plan. I would sit down to write and not finish anything, and then it just became more natural to not write anything. I needed a break more than I thought I did. I’m not sure if it will continue or not but I’m pretty sure I’ll have peace no matter what conclusion I come to (or stumble towards). I have no idea how I kept up a blogging schedule with full work and school schedules.

Social Media: Every morning I (usually) lay in bed while checking email and scrolling social media. One day I found myself wondering why I followed some people because I found myself on an emotional roller-coaster that I had no intention or even interest in being on, yet there I was. The end result was going through all of the people I follow and unfollowing a good number. I can’t say I feel better, but things feel more manageable.

Books: I’m enjoying making use of public resources, and my bank account appears to be thanking me for it. I have slowed down my reading consumption but I’m still going at a somewhat steady pace. After checking out the wrong book, not once but twice, keeping up to date on Good Reads has become somewhat essential.

Clothing: I have a dwindling wardrobe, on purpose. I was looking for a pair of pants in my closet, and similar to what happened with my social media accounts, I ended up donating half of the pants I owned. I don’t know why I had so many pants because I think I only wear 3-4 pairs on a regular basis. The same thing happened with my sweaters soon after. I’m hoping this trend occurs with the rest of my possessions. Why did I feel I needed so much, because I clearly don’t need most of what I have even after a purge?

Ministry (or whatever you want to call it): I’m still working on my capstone project, even though it’s not really a project anymore. It hasn’t gained the traction I had hoped for and granted I haven’t been able to bring what I had in my head to the web, but it doesn’t feel right to just let it go.

Christmas: I have a fair amount of my shopping done. I don’t claim to be one of the “Christmas crazies” that enjoy starting the countdown to the big day in July, but I find it much easier to have a “shop as you go” approach to gift giving, rather than scrambling for the perfect gift closer to a deadline dictated by a calendar.

Work & Career: This could probably be two separate things but I’m making it one. I’m on the job hunt still writing cover letters and sending out my resume. Things are happening slowly but surely, and that’s fine with me. I made the decision to stop accepting speaking and educational engagements that don’t offer some sort of compensation. I can’t live solely off warm fuzzies an thinking I’m making the world a better place, so I needed to stop doing it.

Friends: They’re all off being amazing and doing amazing things, like this one, so I’m watching things happen wherever I go.

Podcasting: I’m considering a return of sorts so stay tuned, if you’re interested. I am listening to more podcasts, most notably The Catholic Family

Swimming & Other Physical Pursuits: The short of it is, same coach different environment. It’s been an adjustment, and a bigger one than I bargained for so I’m trying different things, for the sake of motivation, until something clicks. I have no idea how professional athletes change coaches and or environments semi-often and seem to not miss a beat.

So that was September. How was your month? Did I miss anything that I should have covered?

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Everyone Needs A Rabbit

There’s a term in swimming called “being a rabbit.” It comes from dog racing, I think. The idea being to have 2 swimmers race each other, making one push the other to be their best.

I never thought I’d ever have a rabbit so forget about being someone’s rabbit.

At least until a few weeks ago……

I had a few pool-mates heading to a big competition and with nothing on my calendar, at that point in time, I was taking it easy focusing more on technique than speed. The coach was trying to get someone to focus when the magic words came out of my mouth.

“Do you want me to be her rabbit?”

It was an idea. I didn’t think anyone would take me up on my offer.

I spent the next hour “playing rabbit,” a position I never thought I’d be in. Needless to say, I probably wasn’t the best rabbit, because I was focused on my own speed rather than the person I was a rabbit for. Normally this would be an ideal situation (I think) but this was one of those rare times when I probably should have stayed a few stokes ahead rather than more than a few yards.

I considered my time as a rabbit as a “one and done” deal, not because I’m probably not the most ideal candidate, but because of the circumstances. Usually I’m preparing for a meet alongside everyone else, and in all likelihood that’s a more probable situation in the future.

Some time later I watched Cody Miller’s vlog where he specifically mentions the need for a any swimmer to have a rabbit:

Everyone does need a rabbit at times, someone to push you when the motivation isn’t there, when the focus isn’t where it should be, when you just need someone to race (or whatever the equivalent happens to be).

Be willing to see the benefits of having a rabbit and be willing to be a rabbit for someone else.

May The Choice Be With You

I’m finding out that the older I get there’s so much more to learn than I ever thought there would be. I’ve often told my dad that, the older I get the dumber I feel, and most days I mean every word. Surviving Sandy was no exception.

I’ve lived through hurricanes before. This wasn’t my first evacuation either (and if I never have to do it again that’s fine with me). But there’s always room for another first.

I’ve always considered myself a tough person, kind of, when a lot of people tell you something, you start to believe it.

Up until recently my dad was an engineer for a major power company; I grew up knowing that having electricity is a right as well as a privilege.

I learned at an early age that there’s no master switch at your power company that someone uses to turn your power back on.

Going to work with dad often meant hanging out with a crew of linemen and bringing them coffee.

During major outages when it’s “all hands-on deck” my dad even worked as a lineman.

My parents (although largely my dad) have always stressed being prepared. Although a situation may not always be ideal do everything in your power to make sure you can in fact survive.

During my service orientation the concept of “no energy days” was brought up. I thought it was an interesting idea, but I was already giving up internet, cable, and who knew what else at that time. I didn’t want to jump on the bandwagon before I actually moved into the house or talked to my housemates.

Sometime later and over dinner we discussed bills. It was suggested that one person in the house handled the bills. We agreed, but also wanted to be kept in the loop. I for one didn’t want one person telling me what I could or couldn’t do just because they paid the bills.

“No energy days” were appealing. We were all curious as to how far we could stretch ourselves in certain areas. The volunteers from the year before had “no energy days” regularly; I figured we could do it too, and better (although it wasn’t a competition, my brain often made one between the two groups).

I don’t remember many of the details of our “no energy day,” or how many we had. But when it came down to it it didn’t make much of a difference to us as a community, we were already unplugging things when they weren’t being used, we embraced, the fireplace, wearing layers and blankets before turning to the thermostat.

I also lived with a Montanan. For those of you who have never lived with a Montanan let me explain to you just how this impacts your life. They’re like the boy scouts on steroids, at least from what I’ve experienced.

And repercussions of such never leave you; like deciding to stay home in freezing temperatures because you have a mummy bag, plenty of stored up water, reading to catch up on, and a headlamp to read by.

Fast forward to Sandy. Honestly, I should’ve been able to handle it better. I have the skills and the know-how. Living without power, for example, for an extended period of time isn’t ideal but its doable, people survived without phones and TVs and such for hundreds of years after all.

Somehow in the personal debriefing of the situation, and unpacking, and organizing, a thought crosses my mind.

Choosing to go without has a purpose behind it, like self-discovery or solidarity or simplicity.

Going without do to circumstances beyond your control requires more out of a person. It requires just one more thing for you to do without, but it’s the biggest thing most people don’t want to give up.

Control.

Next time you find yourself going without, in whatever form that takes, may the choice be with you.

One More Thing: Next time you have a power outage & you see a crew of linemen out there working to restore your power bring them some coffee (or a thank you card). They not only work hard but long hours (12-16 during major outages) & many of them wouldn’t dream of doing anything else.

*A similar version of this post was written on November 13, 2012

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.

I Wish I Was A Unicorn

On a recent episode of The Accessible Stall Kyle & Emily talked about employment/unemployment. Naturally this topic hits close to home at the moment, so I gave it a listen, naturally.

2018-04-25

You should give it a listen when you’re done here.

Both Emily and Kyle acknowledge that they’re both in the unique position of being gainfully employed but that’s not the part that stood out to me, although it should be noted that it’s highly unusual for two normal (meaning not really that famous) disabled people to be financially self-sufficient.

They called themselves unicorns.

Then it hit me.

I wish I was a unicorn too.

I want to be a unicorn.

I do have a dream job in mind, several actually. I’d like to achieve my dreams but right now I want to be a unicorn.

I am already a unicorn, in a sense, but I don’t feel like a “full unicorn.” I have no upward mobility in my current job. Some days I feel like I’m just filling a spot until someone else comes along or I leave my position. So, I’m more of a non-unicorn than the actual unicorn I wish I was.

There you have it, I’m still looking for a job. If it happens to be my dream job than that’s a bonus. But more than anything I want to be a unicorn, not because I want to be a unicorn, but because I don’t think anyone should go around wondering or knowing if they are the unicorn of their workplace in the future.

#ILoveMyDisability

There was a time when I’d spend my nights reading blogs, but these days I’m more likely to read threads of hashtags.

#SayTheWord & #StopAbleism2015 are two that kept me up late at night scrolling though people’s thoughts. #ILoveMyDisability is just the latest one.

I thought I’d share a few of my favorites, in no particular order, for no particular reason:

 

To Successfully Succeed

Confession: I can’t believe I haven’t written about this before. If I have and someone knows where the post is, would you be kind enough to post the link in the comments section. I’m not that great at virtual organizing so even if I did write something I can’t find it.

 Katy asked,
“How do you define success?”

 My answer to this question has very little to do with the fact that I have Cerebral Palsy, but I’m sure it colors my answer to some extent. I hope my answer gives you more insight into the fact that people with Cerebral Palsy are more like those without Cerebral Palsy than they are different.

This is question that’s like, “Describe your ideal summer vacation,” the answer changes depending on where you are in life. At 5 your ideal summer vacation is going to D!sney World. At 25 you’re just hoping you’ll be able to afford a summer vacation (we won’t go into how I feel about summer vacations these days).

If you asked the pre-college me & new college student me I would define success as being famous and having everything that goes along with it, or at least all the good parts you can think of (not the bad parts).

If you asked my recent college graduate self what my goals were she’d tell you she just wanted to finish the final projects and graduate. I never wanted college to end but I wanted to workload to end. I guess I’ve been a sucker for community longer than I thought.

These days my definition of success has changed a lot. I don’t want to be rich or famous. Nor will I feel unsuccessful if neither of those things happens, especially since that’s not how I chose to define myself anymore.

These days success comes in a variety of different packages.

A work day that involves minimal paperwork and I’ve reached daily goals I’ve set for myself as well as reaching the staff wide goals? Success. Making positive strides to live my word for 2013? Success. Networking to further my business? Success. Being able to pay my bills and have my insurance pay what they’ve promised? Success.

Things seem simpler now, not to mention more depressing now that I’ve written it, but it’s not really. My priorities have changed. It happens with most people, I’m guessing. It would be awesome to be able to travel more or take more “time off” but it’s not in the cards, at least in the recent future.

In terms of concrete things that I would like to be successful at, I would love for my business to do well enough that I’d be able to quit my day job and still be able to support myself. It would be nice to be able to be in a healthy relationship and maybe have a family, but right now I’m not planning anything other than being able to take care of myself. I’d really like to be one of the few small business success stories out there (Inquire if you dare!)

On the first day of classes every semester at least one of my friends would write, “I will do my best to successfully succeed,” it’s been something of a manta ever since. There are days when success is smaller than others, but it’s still success. What I really want is to succeed successfully throughout my life, meaning I want to do well without causing harm to anyone else, self-included.

*A similar version of this post was written on March 20, 2013

Summer Shedding

My summer has been full, as usual (but more on that later). My room is full of files of stuff that just reinforces my fullness (and lack of organization). But there were 3 shirts in particular that just kept sticking out to me, and recently I’ve had enough.

By the end of the day I ended up getting rid of nearly half of my clothing & shoes, starting to dispose of old prescription medication, and cleaning out my inbox.

I felt better that the deed was finally done but the piles seem to have reappeared, or maybe these are just the piles under the piles.

I’m sure you’ve heard of spring cleaning but this is more like a summer shedding.

I started with the three shirts and by the end of the day there was a mountain of clothing and shoes at the top of the stairs, and some of my drawers still can’t close easily.

For a long time I was worried about getting rid of a lot of things all at once because I had be told, and multiple times, that if someone gets rid of the majority of their belongings at once it’s a sign that the person is contemplating suicide. (I recognize the flaws in this logic upon hindsight, and current trends of minimalism)

Although I’ve gotten rid of a lot of stuff I still plan on doing it again, and soon, sort of a “round 2,” in case I changed my mind on something(s).

Truth be told there’s a lot of stuff I would like to rid myself of but I can’t, at least not anytime soon.

As much as I was dreading getting rid of so much stuff at once I felt much better about it once I got started. I did get sentimental about things but I was able to get past most of that and see the bigger picture.

Not to mention wonder why on Earth I saved so much stuff. What was my reasoning for it, at one point in time?

I kept finding myself jealous of people who have had to move multiple times in their lifetime.

I’ve been fortunate to be able to have a “home base” my whole life so even when I have moved I haven’t had to worry about taking everything with me (or worry about having somewhere to put it all when it came back).

What’s that they say about the grass being greener?

I don’t think much of my life will change from this experience, other than the fact that I’ll probably do deep cleanings more frequently, but I’m close to embarking on the next step of my life. I can’t have a bunch of “stuff” to leave behind if the opportunity presents itself.

Acknowledging Your Personal Puzzle

There are a fair number of analogies of what it’s like to live with a disability, I find some more accurate than others, but countless people disagree with me, which is why there are so many analogies.

There’s also something to be said for basic language around disability, person first, identity first, whatever.

There’s so much to be said about so many topics that divide the disability community but I think I’m starting to find a common thread in all of them.

The path to self-acceptance or one’s own disability.

While I sometimes forget I have Cerebral Palsy, it took me a while to accept the fact that I had Cerebral Palsy, and that it did in fact inform every aspect of my life.

Once I figured that out I thought my life would get easier, at least somewhat, mentally, but it’s not really like that. It can actually be hard to be conscious of how your disability is integrated into your everyday life, especially if you find yourself thrust into the world of activism.

At what point do you highlight your disability, especially if it isn’t visually obvious?

How do you identify as disabled?

To what extent do you bring attention to your disability?

The Cerebral Palsy community is an interesting one, for various reasons, but not limited to how much a person allows CP to be part of their life. It’s always a piece of the puzzle, but the size of the piece is the question.

Some get to make the choice, others don’t, to some extent.

Making the conscious decision to embrace it, and all the opportunities that come your way because of it is a completely personal decision.

As someone who didn’t embrace their disability until their 20s I wonder just way I waited so long. I’ve gone back in my head wondering what and/or when I would’ve done something differently multiple times and I can’t come up with and I can’t come up with something, anything, that I would willingly change.

I guess that’s one of the pieces of my own puzzle.

An Ode To Sweet Caroline

Almost a year ago I (finally) met my new comrade, named Caroline.

Caroline

Yes, my wheelchair has a name.

You honestly didn’t think I’d let a CP Awareness month go by without a post about wheelchairs, did you?

I came across a vlog recently that sums up some of how I feel about wheelchairs, and the choice to use them.

I don’t know why people have such strong feelings, that they feel need sharing, about something that should be a personal decision. For me, a wheelchair isn’t a hindrance. Instead its independence.  Part of the reason why I gave my chair a name is to make it (or should I say her?) more approachable. A wheelchair isn’t a symbol of loss, it’s a symbol of modification.