August: The Recap

It’s difficult to know what to say about this past month. I’m (still) trying to rehab my shoulder. I know it could be taking longer than it is, but it still seems too long. I’m trying to take things slowly, but I’ve learned firsthand the double-edged sword of rehabbing as an athlete. Being goal orientated isn’t the problem; being patient and taking the time it needs to take to reach goals successfully is the problem.

I was out of the pool for a month. It went faster than I thought but it was still a long time away. I’m slowly working up to what will hopefully be full workouts sooner rather than later.

I had planned on staying away from the gym too, that is until my legs looked like they were having episodes of Clonus, at least to the untrained eye. I never thought I’d look forward to “leg day” but here we are.

Since my schedule has been cleared (basically obliterated) it’s given me more time to do other things.

And by other things I mean not leave the house and toll the internet for anything that pops into my head, which ends up being a lot of stream of conscious thinking.

I’ve been able to really look at the content that’s out there. A lot of it is great. A lot of it is a complete dumpster fire.

A while ago I wondered if I was screaming into the void known as the internet. Now I’m seeing a lot of people screaming, and it’s not into a void, it’s at other people.

While I’m enjoying countless Tw!tter threads and the exchanges happening (good, bad, and indifferent) I’m mostly enjoying them as a spectator. I want nothing to do with it as a participant. I have no desire to defend or deflect anything on social media.

It got me thinking, if this is the nature of social media now, do I have a place out there?

Of course, everyone has a place online, and if there isn’t one, you can make one for yourself. But that doesn’t mean you’ll get noticed or be accepted by others.

I’m at this crossroads of my digital life. There are plenty of people out there doing what I want to do, and I support them as much as I can, because they express themselves better than I ever could. Add into that that I’m finding social media is causing me anxiety and my lack of desire to engage in dialogue in a “public square.”

I’m finding more enjoyment in being a spectator than being an active participant, and that’s just fine with me.

I’m hoping once I get back to a more normal schedule things will just fall into place. If it doesn’t, I’ll figure it out. The internet isn’t going anywhere and it’s not like you can go “off grid” that easily these days.

Other that, Mister Lincoln, the play was great……

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July: The Recap

I finished my steroid pack for my pinched nerve.

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I was feeling loads better, but not 100%. I figured it would take some time, since it typically takes six weeks to fully recovery and I did seek treatment on the earlier end of the timetable, so I figured my muscles needed to catch up with the nerve.

I tried to take things easy by lightening up on the dryland lifting and yardage in the pool, but I had a feeling something was up.

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I made an appointment with the provider I had originally tried to get to treat the pinched nerve. He had some different ideas about my injury, like that it’s possible that they are injuries. Getting right to the point here. No swimming until further notice.

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Which I refused to accept on face value.

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But they did put in a referral for a provider I’ve been trying to see for over a year. So that’s happiness.

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I scheduled a PT eval at the first possible opportunity. I don’t have time to waste.

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I haven’t gotten a timetable for when things should resolve themselves other than if I’m patient and do exactly as instructed it should take too long, two things I’m really good at.

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If you’ll excuse me, I have to get back to recovering myself, even though I am completely and utterly over it.

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June: The Recap

What can I say about June?

I thought it was my first summer without a class schedule. I guess it’s possible to completely forget about an entire three-month period because that’s exactly what happened. If you asked me two years ago what I hoped I’d be doing now the last think I probably would have said is, “be taking classes.”

Right now, that’s all I want to be doing.

Because God’s a comedian.

So, what has the month looked like for me as a normal person?

Not much is different on the work or sports fronts, so I’ll skip to other stuff.

Reading: I’ve discovered the joy that is K!ndle Unlimited. I’ve read a lot about people who have either gotten lost at sea or decided to sell everything and sail to various points around the world.

Travel: Flights to Australia and New Zealand are cheaper than I would have guessed they’d be.

Podcasts: I haven’t recorded any new episodes and there’s nothing in the works to start up again, at least not at this point. I have been listening to more podcasts, Catholics of Oz, Raising The Betts, and St Dymphna’s Playbook are my newest additions. Sean’s back in production with Just A Catholic Dad, and I’m loving it.

In the Netfl!x department: I caught up on The Casketeers and watched Dead To Me in one day. Both could be viewed as pretty morbid, but I enjoyed them both in their own ways. The Casketeers made want to see how much a fight to Auckland would be. I’m curious to see what season 2 of Dead To Me will look like because I think it could have been a one and done series. I started watching A Wrinkle In Time but keep stopping it. I don’t want the movie to wreck the book for me, I think.

Books: I’m cleaning out the mounds of books I’ve accumulated over the years. I’m not getting rid of as many books as I would like to or thought I would I thought I’d end up with 2 piles “keep” and “donate.” Instead it looks like I’ll have at least 3 piles “keep,” “donate,” and “haven’t read yet.” It turns out there’s a pretty big pile of books I’ve accumulated that I never got around to reading. I’m not sure I want to at this point, but I might as well while they’re still in my possession. Maybe something will spark me.

Blogging: It’s pretty obvious that I’ve slowed down my own substantially in the last few months, but my reading of other people’s blogs has picked up. Most of them are written by celebrities, at least allegedly, as much as I’m enjoying reading them, I think I like the inner workings of “normal people” more.

Health and Fitness: The month ended with a bang, or rather a pinch. A pinched a neve in my neck, we think. I did the same thing during college and I was told it would likely reoccur often so making it over a decade before a 1st re-occurrence is an accomplishment, although a weird one.

Onward to July……..

May: The Recap

Would you believe I almost forgot to write this post? I was looking at my calendar to calculate my work hours, one of the many perks of consulting, and I realized that it was the end of the month.

Here are a few highlights, in no particular order whatsoever:

I cohosted another podcast for Special Chronicles. It was a long hiatus, but intended and if you listen to the recording, I think you’ll understand why. I may be back for more in the future. I may not. Time (and content) will decide for me.

I spend nearly a week in the Nation’s Capital. The longest I’ve spent there since undergrad over a decade ago. It was an awesome trip, but I wasn’t prepared for it. I found myself doing things, like getting on the metro, that I used to do multiple times a day, that felt familiar and foreign all at once. At times it felt like the planet shifted on its axis a few degrees.

Short course (Swimming) season has more or less ended. I’m happy that I ended the season on a high, but I’d be lying if I didn’t say that I’m a little frustrated to be feeling like I’ve hit my stride, or stroke, only to have a break now. But it only gives me more to work for next season.

I met a lot of new people, more than I thought my introverted brain could handle, and loved nearly every second of it; even if it did take me a while to recover from all of it.

I also met Heather, behind Family Synapse. We’ve been following each other on Tw!tter for years and we somehow managed to sit at the same table and talk to each other for hours before realizing who each other was. Then we were able to take on the city with each other (when I really didn’t want to on my own). It was probably the best surprise of the week.

Once I got home, I tried to get right back into the swing of my everyday life while taking in everything I learned the week before. I felt like I was back in school. There’s still so much to read and more emails to send even now. It’s a lot to manage but in a good way.

If I didn’t have to sleep, I’m pretty sure I’d be one of the happiest people on the planet right now.

I finally broke down and bought a new tablet, after having a basically nonfunctional one for years, I should have pulled the trigger a long time ago. I don’t know how I ever managed to get as much as I have done without the ease of use of a tablet. Not to mention I can now work from bed, or any other more comfortable environment, much easier.

I’m not really sure how this past month with play into the rest of my life but I can’t help but feel like it was some sort of turning point. I’m just trying to sort out what (or where) the turning point is and where to turn once it’s been identified.

It probably won’t be the easiest thing, because very little of my life is ever easy, but what’s that saying, “I don’t need it to be easy, I need it to be worth it.” Is that the saying?

Whatever happens I’m oddly optimistic about it for the first time in a long time.

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.

 

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)

Cerebral Palsy In The Future

This topic makes me a little nervous, although the title implies some level of boldness, so let’s hope that’s the direction in which this is going to go.

Cerebral Palsy in the future, what will it look like?

Selfishly I hope it’s still around in 20, 30, 40, 50, or more years from now.

Why?

Because I don’t see the need for a cure.

Living with Cerebral Palsy isn’t a walk in the park by any means but I rarely, as in almost never, wish I didn’t have Cerebral Palsy.

I’m not saying that some cases of CP shouldn’t be prevented if there’s a direct case and effect for it, like an infection that then results in injury that results in a diagnosis of CP.

What I’m saying is I don’t think all Cerebral Palsy should be eradicated.

Cerebral Palsy is a disability not a disease that needs to be treated, unlike something like polio, for example.

I don’t see CP in itself a problem, the comorbidities that can accompany it are a different story, the problem with living with CP is more about faults in the healthcare system rather than the diagnosis itself, from my point of view.

I wish more doctors knew about Cerebral Palsy and were willing to have people with CP as their patients. I want to get the same quality of medical care as my able-bodied peers. I don’t want to keep seeing the glazed over eyes and quizzical faces when I go over my medical history, just because I have the most common motor disability in children.

I would rather curing efforts go towards something like epilepsy, which can improve the lives of many people with and without CP.

I also wish there were more studies on CP past the point of the early teen years. I wish I knew more of how my life could look like 10 or 20 years from now. All this effort goes into the pre-adult years but not what happens after. I’ve said it before, and I’ll say it again. Children with CP grow up and become adults with CP so we need to know what we may be facing in the future.

The lack of treatments for adults is another issue that’s probably too complicated to go into here and now, especially with the way things are progressing in medicine at this point in time.

Plus, eradicating something like CP feels like taking a step towards designer babies in a sense. I’m not sure why I can’t put many words to why I feel that way, but it is something I have thought about.

I hope Cerebral Palsy is still around 20, 30, 40, 50, or more years from now. The one thing I do hope for CP in the future is that we have better education and care by the healthcare system that often leaves us looking for somewhere to go or feeling like there’s no place for us.

I don’t think we need to be fixed but we do need to be treated better than we are now.

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.

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 Awareness Day

I’ve made no secret that I’m not the biggest fan of awareness days, yet I feel obligated to participate in them. Today is National Cerebral Palsy Awareness Day in the US, not to be confused with World CP Day which occurs during the fall.

Last year there was (finally) a senate resolution officially designating March 25th as National Cerebral Palsy Awareness Day.

I’m not one to keep up the daily goings on of the senate, or any other governing body, so I don’t usually read official documents, but I read the resolution to see what it entails.

S.Res. 400 is a bit of a disappointment, unless I’m misunderstanding the purpose of senate resolutions, and if that’s the case someone please feel free to explain it to me.

All it says is what we already know, or information that can readily be found during a basic internet search.

I was hoping for something more, even just a little bit more.

I know the government is deeply divided but if this has become standard operating procedure in order to get our elected officials to agree to known facts than maybe we need to reexamine how things are run and who we are electing to run things.

So the government needs to agree that a condition that’s been around for 100s of years before agreeing that it needs recognition. Does this not sit well with anyone else, or is it just me?

We have a resolution that says today is National Cerebral Palsy Awareness Day. But what does that really mean? More importantly, what comes next?

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*A similar version of this post was written on March 25, 2016