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.

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.

7 Questions: A Few Years Later

A few years ago, in my 20s, I did an interview on another blog. I thought it would be a good idea to update my answers. Plus, I’m running out of topics.

Tell everyone a little bit about yourself.

I’m in my 30s. I have a master’s degree in theology. I work full time as a speaker and writer. I also contribute to medical education and improvement of medical care for people with complex and chronic health conditions. I also have a few part time positions. I live on the East Coast and still prefer to keep things low key. I have fully embraced my introversion and often don’t get out of my PJs to get work done.

Can you share a little bit about your CP, and what kind of therapy was most helpful for you growing up?

I have Spastic Diplegia. I’m a GMFCS level 2 (last time I checked). I had PT at least twice a week from roughly 1-15 years old. I can’t say how helpful was or not because I didn’t have the opportunity to try anything else. These days I swim (on my own and with a coach) and go to the gym (with a trainer) 1-3 times a week, depending on my schedule.

How has having CP affected your life, do you think?

It’s still hard to say how CP affected my life growing up but I do think it affects my life more now than it did even a few years ago. Part of it is by choice, because I make a living by talking about the fact that I have Cerebral Palsy. The other reason is that although CP doesn’t get worse it does make aging more interesting. I have more difficult days with joint pain, spasms, etc than I used to have (I think). I’m doing more to manage my CP than I had been, just to keep myself in the best shape possible.

What’s been your greatest success?

I still think I’m waiting for my biggest success but getting a post grad degree was a big success. Also being able to use my live with CP to improve the lives of others with CP means a lot to me.

And what’s been your biggest challenge?

My biggest challenge depends on the day, if I’m in a lot of pain my biggest challenge can be getting out of bed, other days it’s trying to figure out the best way to get to a speaking engagement, sometimes it’s the metal challenge of getting through a swim practice or workout. Luckily my schedule is flexible enough that I can make adjustments when needed.

What’s your biggest aspiration?

My biggest aspiration is to have a career where I can sustain myself with as little assistance as possible. I really like being involved in medical research and education from a patient prospective, so I’d like to stay involved in that in some aspect. I also may teach at some point in the future, what I’ll teach is still a work in progress, but it’ll happen.

What advice would you have for parents raising kids with CP?

They probably don’t realize they’re disabled as much as you do so treat them like a normal kid as much as possible. Don’t lower your expectations just because they have CP. Don’t take what other people, like doctors, as gospel truth. There’s a lot going on in terms of care and treatment for people with disabilities and chronic medical conditions so what you were told five years ago may not be true five years from now. Seek out multiple opinions and do what’s best for your child don’t be sold on the “in thing” to do.

So, there you go, some of my answers are different, some are mostly the same. I’ve learned a lot more about myself and about Cerebral Palsy in the last few years. Oh, to be in my 20s again, or not, sometimes being young and stupid can double edged sword.

Cerebral Palsy & Aging In Community

This is probably going to be more like a “patchwork post” so bear with me this could end up going anywhere.

Having Cerebral Palsy can be a lonely experience, especially if you don’t have any friends with CP or know anyone older than you who has CP. Things have changed thanks to social media but there are times when that’s not enough.

I didn’t have any serious friendships with people with CP until my 20s but I knew of people with CP so that was enough for me, until I got older. I’m not sure what changed but something tells me it has to do with post college life (and it seems like it doesn’t matter what your ability/disability is).

I had a great group of friends in college, especially during the second try, but they were always down the hall, in class, or in the same social circle. The majority of them are/were able-bodied and the fact that I had CP wasn’t really high on the list of topics.

But as our careers as undergrads were coming to an end we were warned, and I should have listened, like even a little.

Once I graduated my bubble was gone, I had to look for my community. I couldn’t just wander down the hall or into the dining hall and interact with people who I knew and knew me. I had to work for it (and I still do), add in introversion and it’s a tall order.

Life after college is where things really started to be different, almost all of my able-bodied friends found “a place to land” whether it be grad school, full time jobs, or ministry. But I moved back home, the last place I wanted to be, and tried to start my life after college.

I never thought of networking my way through college, like some do, and didn’t even consider how being disabled would factor into my future and how networking may have helped (and in all honestly, I don’t think anyone else ever brought it up either).

So, I would sit in front of my computer for hours on end seeking out community (and a job). I did this for two reasons, 1) social media was picking up steam and 2) I didn’t actually want to put forth the effort to go out and meet people face to face, again introvert.

I found a community I had been ignoring because of the internet but I’ve still lost the immediacy of community that I had in college (and by extension my 20s). It’s a “six of one, half dozen of the other” situation, but it doesn’t have to be that way for everyone.

I don’t regret anything I’ve done (or not done) in my life but if I had to give any advice to someone else who can identify with some portion of my life, I have to say I agree with the advice that got my wheels turning when I thought to write about this.

You have to put more effort into what you want to maintain once your environment changes, social bubbles are great, but they don’t last forever; lay the groundwork when and where you can before it all poofs away.

Cerebral Palsy Awareness Month: 2019

If you follow me on social media you can probably guess what I’m going to say because I’ve been posting annoying Inst@gram Stories and tweets on Tw!tter for the past month.

Today is the start of Cerebral Palsy Awareness month.

I’ve done this before, and I want to do it again.

I’m going to write a series of posts pertaining to Cerebral Palsy, but I need your help.

What do you want to know?

What questions do you have?

What have you heard, that could be fact or fiction?

What do you know about Cerebral Palsy?

What do you wish you knew, or even had the slightest idea about?

What do you wish other people knew about Cerebral Palsy?

What would you like to share about living (and/or working) with Cerebral Palsy?

I know parents of kids with CP & young adults with CP read my blog. Both groups have questions and opinions (I would too if I were in their place).

I may not have all the answers to every question or myth that there is out there, but I believe I can provide guidance and provide inroads.

I’ll be the first one to tell you that I’m not in expert in Cerebral Palsy, but I do have live experience to draw on, and that’s not something I take lightly.

I’m open to feedback for the entire month, so if you can’t think of anything right now never fear there’s still 20-ish days that need material (just contact me).

February: Recap

Do you ever feel like you need another day in the week? That’s how I feel about February. Leap years make me happy because I have 24 more hours to fill before the calendar turns over.

The last 28 days have been close to a blur.

It’s been 28 days of illness and/or injury, and if not either one of those, swim meets.

Doing anything while riding out a virus can be difficult, trying to train though that can be a tricky balance. Do I swim or do I rest? I can’t tell you whether I made the best decisions or not, but I will tell you that next time I decide to enter 3 swim meets three weeks in a row I’ll be sure to have a better training base.

Work was slow this month so while my bank account is a little less full than it would be at this point in the year, I was afforded the time to recover from my various ailments without having to miss out on much, if anything.

I spend the first half of the month thinking March was a week away and the later half of the month thinking I had a few weeks before I had to plan out what’s next. Now March starts tomorrow and all I have to show for it is a bunch of blog posts in various states of completion.

I watched a lot of entertainment related items this month, there’s only so much one can do under the constant haze of Ben@dryl. Unfortunately, a lot of them required subtitles so it was more than I bargained for in terms of the brain power required, on the plus side I retained more Spanish in my six years of study than I could have guessed.

I’ve been looking through boxes of old school papers, like from the 90s old. It’s strange what was considered an accomplishment back then. I have more than one certificate to congratulate me for having a good day in school. And people complain about having to deal with a generation of “snowflakes.” I wonder how that possibly could have started? Could it have been because we started giving out certificates for just getting through the day? (I vote yes)

I still don’t have a clue how my word for the year fits into my life. I’ve given up any means of discerning what it could mean after 2 months of basically journaling my brains out. But there are 307 days to sort something out, wait for the heavens to open, or a lightning bolt to strike my in the head.

Don’t get me wrong, there’s been plenty of “new” this month, but it feels forced, like I keep trying to make something happen that isn’t meant to be.

I’m not going to say that I’m excited to see how the next month unfolds, I haven’t been excited for that kind of thing in who knows how long. However, I hope that next month brings more productivity and peace.

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.

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?