April: The Recap

I feel like my brain in on a loop similar to Groundhog Day, same thing, just a different day, with the exception that April is not March so I’m back to monthly recaps rather than daily posts.

I was wondering what would happen after making myself write for a month straight, whether it would spark something or just beat what little creativity I had left to death.

It turns out neither one happened, but I’m still sorting out what I’m doing here, and even if I belong here at all.

I used to love blogging. I couldn’t get enough of it whether it be writing or reading blog posts. I still like it these days, but I don’t think it would bother me if some other medium were to take over, whether I would partake in a new medium would be a wait and see type of deal.

A few months ago, as recently as February in fact, I didn’t think I had anything left to say; if I did someone else usually put thoughts similar to my own out on the internet before I could get the words through my fingertips.

It turns out I do have stuff to say, but blogging may not be the best place for it. A podcast or vlog could be a possibility, if I had any interest in the production value either of those would require, which I don’t. In fact, I’m pretty sure I would have a Y0uTube channel by now if I cared enough to learn about the production aspects of it. I do like production, but as soon as editing comes into play, I check out. It’s not for me and I don’t want to look for someone to do it for me, but if someone were to offer, I wouldn’t automatically say no.

So, I’ll continue to write. It just won’t be here, unless it belongs here.

Not one, but two positions I applied for a less than a year ago have reopened. I’m wondering if I should apply again or take the first no as a final no. As I sit here now looking at the exact same requirements I did months ago I can’t say I can see why I didn’t get an offer but I can tell you so much has changed for me, at least mentally, that I’m looking at the same thing fairly differently. However, my brain is still screaming “don’t reapply” because it just seems like a weird thing to do.

I’m wondering, again, what the perfect position would look like for me.

It’s not what I thought it would be if you asked me what it would be when I graduated from high school, or college, or at the end of my volunteer contract.

It isn’t even what I thought it would be at the start of this year, if I’m being completely honest.

It’s not like I don’t have anything in the works. It’s the opposite. I have a lot going on, but it’s all on a timeline that has varying endpoints. Meaning at some point there’s a high likelihood that I’ll have little to nothing to fill my days with, again.

So, I’m doing what every other sane person does, or would do, in my situation. Keep looking for more work, whether it be something else on a timeline or something more long term. It’s quite an experience, one that I keep getting thrown into, and it’s not always positive.

Normally I would take every ouch of bad news and hang onto it for a while. It can take me a few days to “level off,” normally.

But lately?

Every piece of information that is less than 100% awesome I just think, this is taking me to something greater, and I’m totally fine with that, at least right now, in this moment.

It wasn’t easy getting to this place, and I don’t think this feeling will last forever, but I’m going to take full advantage of it while I have it.

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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)

Poor Fortunate Souls

Although Cerebral Palsy is the most common motor disability among children (who then become adults) it’s pretty common to hear stories of how having CP makes someone or a family feel lonely. I’d be lying if I said I haven’t experienced it myself

I’ve realized something in these last few weeks. There’s no reason for anyone effected by CP to feel alone, there are people on every social network available to talk to, there are books with medical knowledge and personal stories to draw from.

I know that living with CP could be better, and that it’s getting better, but it could also be a lot worse.

I’m not trying to say that there won’t be times when loneliness won’t occur but people with CP aren’t like some people who have disabilities that make them 1 of 10 people in the world today.

It can take some effort to get to see a specialist, like a long car ride or maybe a flight, but it’s not like we have to fly more than half way around the world to see the one doctor who specializes in your disability and potential it’s complications.

But that’s another kind of loneliness one has to deal with, the medical loneliness that comes with being so rare, even when you’re not.

It’s strange to think that with all that we have at our fingertips these days that we still feel so lonely, that no one else can understand how we feel because we have CP.

The Cerebral Palsy community has its issues, which community doesn’t, but it’s not nearly as bad as it could be. We’re not necessarily a tight knit group but we are a fairly large group so it should be that hard to find someone else who has CP that you can at least try to form a relationship with.

I hope that in loneliness people do something similar to what I (and so many others) have done and seek out community. Look at the blogs, F@cebook pages, Tw!tter profiles, and Inst@gram accounts.

Make connections.

Find your tribe.

Read a few books by people with CP.

Watch a movie about someone with CP.

Be inspired.

Start a journey.

Carve a path.

Lead the way.

Having Cerebral Palsy can make you feel lonely for a variety of reasons but if you try to take an objective look around you will probably see how fortunate you are.

Cerebral Palsy: Movies & TV

Because I compiled a list of books on Cerebral Palsy, and was somewhat happily surprised, I thought I’d see what was out there in terms of film and TV shows. The search wasn’t as successful as the search for books was, not even close.

There are more than a few reasons why I deemed this venture “less than successful.”
1) Selection is limited, or maybe it’s just not that accessible by easy search terms.
2) I wasn’t always able to determine whether or not the actor was “cripping up or not” without the help of the internet.
3) Inspiration porn.
4) Lack of actual story.
5) Heavy on documentaries.
6) Just plain bad production value.

I didn’t realize that I was going to be so disappointed by the lack of material until I watched a majority of what was available to me. I think it’s because I was so surprised by the book search, I was hoping for similar results.

For the record I typed in “Cerebral Palsy” or “Cerebral Palsy movies” into various outlets and saw what came up, some addressed CP as a direct topic some just had a borderline reference.

Now I’ve talked about disability in entertainment before, but I don’t think I’ve done so directly here so I’ll do that now.

There’s always a big debate over whether or not “cripping up” (an able-bodied person playing disabled) should be acceptable. For a long time, I said the best actor should get the job regardless, however because of the lack of diversity in entertainment I now think “cripping up” is not acceptable.

That’s why I think shows like Speechless & Switched At Birth are so important and a step in the right direction.

But they aren’t perfect.

I don’t think every episode should be centered around disability but there should be some acknowledgment of when a disabled person’s life deviates from the able bodied, like going through an airport, for example.

I also don’t think you should put a disabled person in a role just because. There needs to be a reason for them to be there other than “we need a disabled person.” They should be characters, not props.

Do I really need to do into inspiration porn? There are articles and such all over the internet you don’t need my input other than, it must be stopped.

There are a few documentaries out there on people with CP but many of those aren’t of the best quality or turn into inspiration porn.

So nothing is perfect, and this venture just proves it.

I’ll end my complaining with a few recommendations (again none are perfect, but these top the list of “least offensive”):
The Long Green Line
Margarita With A Straw
Music Within

Spread The Word

Normally the “Spread The Word To End The Word” campaign would be today. But there’s been a change to the campaign. Now it’s Spread The Word: Inclusion.

Now I’m a little skeptical about this chance, it’s the first year so I think there’s some wiggle room on this one.

What does inclusion look like? It depends on who you ask.

2019-01-12

I have to say I agree with Emily and John.

An inclusive environment means giving disabled people a chance to reach for the same standard as the able bodied.

One of the most common assumptions that people made when I told them I was on a swim team was that it was a disability-based team. When I tell them that it’s primarily an able-bodied team, I got asked why I didn’t choose a disabled team.

The answer is simple, they gave me a chance to become a teammate.

I’ve been (and still am) part of 2 teams, one disabled the other able bodied. They both have their benefits and disadvantages but if you get down to membership fees and team rosters, you’ll find my name right up there with the able-bodied, you’ll find my name somewhere in the middle thanks to alphabetical order.

People think being a more inclusive environment means reinventing your current environment. No. It may mean making some changes but they, more than likely, won’t cost as much as you think, if anything at all.

Most of us know what we need to be included.

We just need to be let in the door.

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.

October: A Recap

Can someone please explain to me why life seems to happen in 2 months of the year rather than spread out over the 12 that exist?

No?

OK then.

The month went like this, although nowhere near as linier.

person using macbook

Photo by Burst on Pexels.com

person in blue jeans and pink white converse all star sneakers

Photo by Pixabay on Pexels.com

black and white browsing business coffee

Photo by Pixabay on Pexels.com

blonde hair blur daylight environment

Photo by Sebastian Voortman on Pexels.com

adult art conceptual dark

Photo by Pixabay on Pexels.com

apps black blue blur

Photo by icon0.com on Pexels.com

silhouette photography of group of people jumping during golden time

Photo by Belle Co on Pexels.com

aeroplane air aircraft airplane

Photo by Agata on Pexels.com

apartment bed carpet chair

Photo by Pixabay on Pexels.com

How was your month?

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?

Grad School: The 1st Summer After

It’s the first summer of my post-post-grad life. The summer of dreamed of for years has come and is almost over. No, I’m not going back to school, at least not yet. Things haven’t gone how I thought they would. I’d be lying if I didn’t say keeping up this blog is getting harder and hard to do, not because of lack of time, but lack of motivation.

I thought not having school would free my mind, give me the free time I missed, etc.

Lucille Ball was quoted as saying, If you want something done, ask a busy person to do it. The more things you do, the more you can do.”

I think there’s some truth to this, although not the total truth.

I feel like I could get more done in a day then than I can now, even if I can set my own schedule more often these days.

If you follow me on Inst@gram or Tw!tter you can probably guess what I’ve been doing with my self-controlled schedule.

Perhaps getting back into everyday life is more than I bargained for. Perhaps my brain just needs to rejuvenate and heal, yes heal.

Maybe having more to do meant that I had more to write about.

Whatever the reasoning it’s caused me to reevaluate my blogging and social media practices, again.

I’ve been trying to put together my post-post-grad life, because it’s not something that just falls into your lap, unless you’re incredibly lucky, it’s something that needs to be built, and then crafted.

Things have been changing in my life and it only makes sense that other things will follow. It doesn’t matter what I thought the long game would be when I have to take into consideration what the long game looks like it is now, rather than what I wish the long game looked like.