September: The Recap

Remember my mini crisis about social media last month?

I attended a 3-day meeting that resulted in my talking at length about the benefits of using social media for greater patient/family engagement for quality improvement in complex medical care.

It was great.

I then sat in a café waiting for breakfast and ended up watching a young family of four eat their breakfast together or rather eat their breakfast while the kids watched their own tablets and the parents were on their phones (if we’re really going to be accurate here).

The children were quiet, just how many people wish children would be in public places, but it was a weird quiet.

It was depressing.

I’m in no position to judge how other people live their lives, in public or private, but watching that family just made me think about things, and here I am blogging about it, so it may seem hypocritical.

Maybe it’s the only child in me, maybe it’s age, but I found the whole experience of people watching incredibly lonely. This family had a perfect opportunity to have a completely wonderful breakfast out, something many people would envy, but here they were watching screens.

Meanwhile everyone else in the café was, seemingly, having meaningful interactions with each other, almost as if it was the time before cellphones.

I stayed off my phone and all social media for the rest of the day.

It wasn’t some sort of protest, but it made me think about how I spend my free time, which is usually on some sort of social media platform.

I, like most people, don’t have a lot of free time. So, what I do with my free time seems to matter more than it used to.

I can’t be the only one who feels that way, or am I?

Social media is amazing. Technology is amazing. But it should be used as an enhancement for people’s lives rather than a replacement for the most basic human skills one should be able to use on any given day.

I have friends I wish I could sit and have coffee with, but I have to settle for emails, texts, video chats, etc. I use what I have available to me to connect with people. Yes, I send texts and emails far too much to people I can see face to face. It’s something I know I need to be more intentional about. I can’t complain about how no one interacts with each other anymore if I don’t do something about it myself.

There needs to be a balance. I wish more people would see the need for it.

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 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 & 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.

Growing Up Disabled

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

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

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

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

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

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

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

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

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?

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

Grad School: The Final Semester

I’m pretty sure a lot of people never thought I’d reach this point, honestly, I had my own doubts at times.

As far as semesters go this one was fairly lonely, like my first one, except this time I was able to recognize the loneliness. I knew a few people in class but not well, and I really didn’t want to make any new friends (yes, I am that kind of person). I wouldn’t go back to last year if given the choice, but I missed comradery, much like last fall.

You’d think I’d have the whole studying routine down by now, but no, there were plenty of nights when I was clicking submit at the last minute. But there were times when I completed assignments a week ahead of time. So yeah, that time management thing went to both extremes.

Although there were times when I wanted to quit, no matter what semester it was, and return to life as a normal person now I don’t know what to do with myself.

I’ve caught up on Netfl!x, which didn’t take nearly as long as I would’ve thought. So much so that I’ve started and finished watching other things.

I’ve even read a book or two, which I swore I wasn’t going to do for 6 months, at least. And by book or two I mean I’ve read a pile or two of books.

I took a short break from swimming, but it was more of necessity than want. And I regretted it within 2 minutes of getting back in the water, the break from swimming, not the swimming itself.

People keep asking me “what’s next?”

Honestly, I have no idea.

Am I cut out to be a normal person anymore?

My face has been buried in books and writing papers for years. I’ve had to turn down more social engagements than I can count, I don’t care to, really.

School has been my excuse to not do things I don’t want to do, but didn’t want to just say no either, so it worked on a few fronts.

I’m sending out my resume again and seeing what’s out there. I’ve been doing it some in the last year but nowhere near seriously.

But that’s not the part that freaks me out the most, although it is daunting.

What will I do with my free time?

I’ve had projects on the backburner for years, but is it time to give them more attention?

That would require some shifting, for sure.

Should I pursue a career based on filling someone else’s shoes or should I continue to forge my own path?