November: The Review

I saw something on social media that mentioned that there’s one month left of the decade. I tried not to be freaked out about it.

Instead I put my head down and went to work in every form one would think possible, and some not.

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shallow focus photography of white camera

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Onto the last month of the decade………

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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.

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……

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……..

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.

 

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.

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.

A Question About Questions

Another good question from Arleen:

CPQuestion#2'19

This answer is coming from a completely personal point of view, because this isn’t something I’m comfortable speaking for everyone.

What’s appropriate?

It depends on the situation.

What’s not appropriate?

It depends who’s asking the question.

A good rule of thumb is if you wouldn’t ask an able-bodied person don’t ask the disabled person (much like offering help).

I don’t mind talking about my Cerebral Palsy, or living with a disability in general, I make a substantial portion of my annual income doing it so it would be hypocritical to say I don’t enjoy it on some level.

However.

Timing.

Is.

Everything.

If I’m standing (really sitting) in a room full of people giving a talk and there’s a Q&A there’s a pretty good chance that nothing is off limits.

All in the name of educating the next generation Afterall.

If we’re friends, there’s a good chance that the limits of acceptability eb and flow. It also depends on the environment and topic of conversation.

If you’re a friend of a friend, ask them, the mutual friend, what they think about your asking the question. If they’re anything like my close circle of friends they’ll set you straight, if necessary, and quickly.

If I’m out at the store (for example), because most sought after “teachable moments” happen while I’m out doing the most mundane things.

Do Not:
-Tell me you’re praying for me.
-Pray over me.
-Tell me someday Jesus will come and end my suffering.
-Verbalize your wish for me to be cured.
-Tell me I’m too pretty to be disabled.
-Ask me if I can have sex.
-Ask me how I have sex.
-Ask me if I ever get upset that I’ll never get married.
-Ask me how I’ll have children.
-Question my fertility.
-Tell someone I’m with that they’re “being so good” to me.
-Tell me you don’t know how I manage to have such a positive attitude.
-Ask me how I manage to have a positive attitude given my circumstances.
-Ask me if I’ve ever been in a relationship.
-Ask me how I manage to be “so cute.”
-Tell me about some miracle supplement that will help my condition.
-Assume anyone I’m with is a healthcare provider, nurse, parent, etc.
-Ask me how my disability affects me on a daily basis, I need more detail oriented question.
-Ask me about the state of my mental health.
-Hand me prayer cards.
-Tell me I should see (insert name of some spiritual healer here).
-Tell me that you know how I feel because you broke your leg in 2nd grade.
-Ask me if I’ve ever been to (insert some spiritual pilgrimage site).
-Suggest I should go to (insert some spiritual pilgrimage site).
-Ask me how I go to the bathroom.
-Tell me you don’t mind if I need your assistance with some sort of personal care need.
-Ask how fast I can “go in that thing.” It’s a wheelchair not a racecar.
-Tell me about someone you know with a disability.
-Ask me if I know (insert famous disabled person). We don’t all know each other.
-Provide assistance without asking for permission. That’s assault.
-Ask me about the Americans With Disabilities Act.
-Ask my feelings about a particular political issue.
-Ask what happened to me.

Basically, use your common sense, if you wouldn’t want to be asked a question in public than don’t ask that question to someone else.

That Thing About The Road To Hell

The first question I’ve been asked comes from Arleen.

CPquestion#119

I’m going to say something that people may seem mean.

If you aren’t asked, don’t help.

I’ve written before about the issues people fact when asking for assistance, but this is going to be more practical advice (hopefully).

I know that there’s a common assumption that random acts of kindness are dying out but I’m going to push back on that.

It depends on your definition of “random acts of kindness.”

A good general rule for whether or not you should offer to help someone is, would you make the same offer if they weren’t disabled?

Meaning, is your primary motivation for offering help is because the person is disabled?

If your answer to the first question is “no” and/or the answer to your second question is “yes,” then don’t offer.

People with disabilities are more like the able-bodied than they are different. Also, people with disabilities don’t exist to make you feel better about yourself. Don’t project your feelings onto them either. You don’t know what it’s like to have people come up to you on a regular basis, sometimes multiple times a day, asking you questions more involved and personal than “do you need help?”

We want to be able to go about our day without intrusion, just like anyone else.

If you do ask someone if they need help and they say “no” they mean “no.” It’s not personal.

But it is personal.

It’s not personal in the sense that it’s against you.

It’s personal in the sense that people with disabilities sometimes have to ask for help on a daily basis from a variety of people. So being able to do something on our own can be liberating, to have someone assume we need help can come off as insulting.

Just because we can’t complete a task in the same manner doesn’t mean it can’t be done, it’s just done differently.

If someone does accept an offer of help follow up with, “how can I help you?”

Not all help is helpful.

You could hurt someone by offering to help without asking for permission and how to go about helping.

It seems unbelievable if it’s never happened to you. When it has it’s often the first thing that comes to mind when someone asks to help, especially if you don’t know the person.

Speaking from personal experience, I’ve hit my head, pulled muscles in my back, thought I dislocated my shoulder(s), I’ve fallen, been dropped, and those are the more major incidences which don’t include the minor bumps, bruises, and scraps that often occur.

There’s a popular saying, “the road to hell is paved with good intentions,” please don’t let your good intentions lead someone else down their own road of personal hell.

So in short:
-Just because someone is doing something that looks difficult doesn’t mean it is.
-No means no.
-Don’t just ask if you can help but how you can help.