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?

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Proof Of Disability

I’m one of those lucky individuals whose state issued identification and handicapped parking permit expire at the same time.

I know it happens, so I knew it was going to happen to me, eventually.

I wouldn’t have to do this if the state had kept their policy of lifetime handicapped parking permits.

What’s that they say about bad apples?

Anyway, back to the paperwork……

Naturally one can not just get another parking permit at will, because that would be just too easy, and make too much sense.

Instead I have to prove that I am still disabled.

Stupid, yes. But not the stupidest part.

Knowing about the paperwork I tried to plan ahead, tried being the important word here.

I wanted to bring it to my last PM&R appointment, but it was too early, you know because disability, even permeant ones, come with a timeline.

So that leaves me with one viable option, the fax machine, and hope nothing lapses.

Why are we still using fax machines?

Is it wrong to think that life would be just a little bit easier for everyone if we eliminated fax machines?

I understand why the policy change had to happen, but I also know it’s ridiculous. There’s no way I’m going to become able-bodied, no matter how hard I work at trying to change it (if I really wanted to).

Bottom line: having to prove disability is necessary, having to prove it again and again is redundant and pretty pointless.

Think for a minute of the life cycle of paperwork:
-I take it, fill it out and send it to my doctor
-My doctor’s assistant, or someone else, passes it on to my doctor
-My doctor has to take time out of his schedule to fill out said paperwork
-My doctor’s assistant, or someone else, sends it back to me.
-I receive the paperwork, review it, and send it to the DMV
-The DMV reviews the paperwork and sends me a new parking permit, that is if they don’t loose the paperwork or forgets to mail my new permit

It’s 3 pieces of paper that could eat up hours in the day of multiple people, time that could probably be spend doing other, and possibly better, things; like things that affect everyone, not just those with disabilities.

I understand the need to prove my disability, because the scams run wide and deep, but do I really have to keep proving it?

12 Days Of Christmas, Kinda

There are so many reasons why I hate the start of the Christmas season, at least the commercial version of it. I’m not sure when it started but I was ecstatic in college when I was given an Advent calendar that included the Christmas Octave.

My cousin says it’s because I know too much, that may be the case now, but back then I think it was just an annoyance.

I hate having to buy Halloween decorations in early September, that Christmas movies run 24/7 on some TV stations from October 1st through New Year’s, and the supposed “war on Christmas, among other things.

I look for anything for an escape, at least until Gaudete Sunday, so imagine how I felt when my coach told the group about the “12 sets of Christmas” challenge.

I’ve heard stories about swim practices during holiday breaks, “Grinch week” or “hell week” are common terms, although mostly in younger groups. Usually time around the holidays is devoted to fun games that happen to double as technique work or some sort of cross training, so I thought the sets would be like that.

No.

It was going to be unpleasant, to the point where I would probably hate it.

I tried making the argument that it was Advent and not Christmas, at least at the time. I threw out the “Catholic card,” knowing it wouldn’t get very far but it was worth a try. It wasn’t totally bailing on the challenge, just putting it off. Anything that would buy me a few more days without time trials makes for a better practice.

However, the “12 Sets of Christmas” was to be completed in December. Thus, covering both the Advent and Christmas seasons, more or less. So even if my argument had held up it wouldn’t have been for long.

It did get me to focus less on Christmas and more on what I was actually doing, which is a good thing, and an essential for a 400-yard Individual Medley, for time, among other things associated with swimming well, or at least well-ish.

I survived Advent and Christmas, and the associated swim sets, actually, I think the swim sets helped take the edge off the intensity of the holiday season.

Although I think it’s weird that the Valentines paraphernalia made an appearance during Advent.

One Word: 2018

Build. Chance. Providence. Transition. Endurance.

Now?

Flux.

Why?

It just feels right.

It sounds better than “blank”, which is really how I feel right now.

I was going to class it up with “transition,” but been there, done that.

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).

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.

It’s more of a discernment thing.

One of my most favorite things to do.

(Not really)

I’m not on the verge of existential crisis or anything, at least not yet, but it can easily go that way, based on past performances.

I’m not in any particular predicament either, but again, it could easily go that way.

I do have a tendency to misjudge situations, like staying in temporary jobs too long or not staying in a position long enough to make it a solid life decision.

Do you see why I chose “flux” instead of “transition” (again) this year?

Similar situation, but far less structured, less direction, more questions that will need answering, at some point.

(I’d like it to be sooner rather than later, but God tends to have other ideas)

One Word: 2017 Review

Endurance

There were a few obvious reasons:

-Attempting to become more of a distance swimmer, because although a 50m doesn’t seem like a lot of work it can be just as hard as swimming a mile. I need the endurance, literally.

*I’ve been focusing on 100s & 200s. It requires endurance but if I pace myself I don’t find them to be as difficult as 50s, mentally or physically.

-Although I’ve made it through the bulk of my degree program I’m really just getting to the hard stuff. I won’t be pushed out of my comfort zone I’ll be blasted out of it, no matter how much I prepare.

*I survived, give or take a mental breakdown. Enough said.

The not so obvious reasons were:

-Starting a search that would lead to an actual career.

*Can we talk about how unfun the searching and applying processes are? But I’m making some progress, it’s better than nothing.

-Basically become better at “adulating,” because I’m (hopefully) going to be an adult for a longer period of time than I was a kid.

*What does “acting like an adult” really mean anyway? How does one measure how “adult” they are?

-The older I get, even though I’m not that old, the more energy I need to get things done. I’m not just talking about physical energy but mental and emotional energy, probably even more so than the physical aspects.

*I love naps. The older I get the more I like them. Ironic considering, I was that kid that never napped in daycare or pre-school. I appreciate being able to go to bed (and fall asleep) early. I’m not envious of people who get to wind down their day at 9pm.

-Developing endurance will give me the opportunity to have more time to devote to one thing at a time, hopefully.

*I don’t have the slightest clue what I meant by that. I’m not sure I’m wired in such a manner than would make that achievable. It is a nice thought though, I’ll give myself that much.

When I Grew Up

I don’t think I can come up with the full list of things I wanted to be when I grew up. So obviously none of the have panned out. However, I’m still waiting to “feel grown up,” never mind actually be grown up, so something could pan out eventually.

There was that time that my high school guidance counselor assumed that I would become a nurse because my mother’s a nurse. My mother then asked the guidance counselor if she had ever even met me before this one meeting, because if she knew anything she knew I would never be a nurse.

Point: Mom

Then there was that one time I was reviewing my health history with a nurse practitioner when he jokingly asked why I never considered become a physical therapist, my answer was “because I wanted to learn something new,” obviously.

I think I’ve had similar goals for why I wanted to be whatever I wanted to be at any given time.

I wanted to make a difference in people’s lives and maybe help them see things a little differently.

It’s hard to say if I’ve achieved this goal but I’m working on it.

I’ve realized I spent a lot of time (probably far too much) trying to be something I’m not. It wasn’t that obvious, it was certainly subtle from my prospective, but with each change I’ve made I feel like I’m getting closer to what I’m supposed to be as grown up.

The funny thing is, if you have a weird sense of humor, I feel like who I’m meant to be as a grownup has been following me around for quite a while just waiting for me to turn around and embrace it.

So, what did I want to be when I grew up?

If you can think of it it’s probably something I thought I wanted to do for at least 5 minutes. None of it has panned out as of yet, somewhat thankfully I admit.

And let’s get real for a minute, I have CP I can’t just have any job I wanted (actually that applies for everyone regardless of ability). So, there were countless things I wanted to be when I grew up that I knew would never happen, so let’s all be thankful I was never interested in Ballet, for example.

I did want to be an Olympian. That was one of the few things I convinced myself I could do, even with CP. I just figured I’d automatically be one of those heartwarming human-interest stories you see between events and commercials.

This was before being rejected from even trying out for the swim team & before I knew there was this thing called the Paralympics for athletes with a variety of disabilities. I don’t want to close the door on my dreams of Olympic glory, but it may be a little late to make a run for Rio (and I’ll probably be too old for Tokyo?)

When it comes down to it I wanted to make an impact on people’s lives. I wanted to make them see things differently or think of something they’ve never thought of before. I never wanted to be someone’s inspiration, but if that happened along the way who am I to disagree.

Now all I have to do is grow up

*A similar version of this post was published on November 21, 2014

Why I: Am Choosing The Back Burner

I’ve been joking for a while that anyone who’s actually following my blog is watching its slow demise.

Honestly, I feel like I’m stringing people along instead of just making a decision (NOTE: if my intuition is correct tell me, especially if you have any strong opinions either way).

Here’s the truth, I’m really enjoying school. Like, if I have any free time at all I want to spend time working on assignments, at least 90% of the time anyway. Why bother putting off “little” assignments that you can get done pretty easily, if you had the time.

The exception being major papers, midterms, and finals, I’m not that far gone. And does anyone really look forward to that stuff?

If it were up to me I’d go to school full time and continue to freelance, because that’s been awesome too. Plus, my advisor, professors, and formation director are fully aware of my goals and more than ready and willing to support my simultaneous pursuits.

It’s a great ideal but it’s just that, my ideal. I have to work in order to make the rest of this work.

It’s a lot to fit in in any given day, but I’ve been able to make it work. In fact, my time management skills have improved greatly (although there is still plenty of room left to grow). So it’s not that I don’t have the time. I could make the time for something if I made it more of a priority.

Here’s the thing, my blog and who I am as a blogger needs to shift or maybe transition would be a better word. I’ve shifted topics from here to there and back again, so that’s not new to me. But I’m not getting the feeling that “Keep Calm & Blog On” is the approach I should take here.

I don’t want to stop blogging. That doesn’t feel right either. I would just be leaving a bigger gap where I’ve tried to fill a void. Nor do I want to overfill the void by telling you everything that’s been filling up my life and how it relates to having CP. I’d rather share the soapbox, if I have to stand on one at all.

So, I need to figure out what I’m doing here and more importantly why, at least when it comes to blogging.

Ideally, and I think what I’m heading towards, is more of an integration of all of my projects. Just how to go about that, if that’s really what’s meant to happen, is the challenge here.

But there’s one thing I have to do first, step back and think.

I’m choosing the back burner, because it feels right.

*A similar version of this post was published on December 30, 2014

SDR: Thoughts 30 Years Later

I kept telling my family that I couldn’t wait until I’m 33 years old.

And it has nothing to do with it being referred to as your “Jesus Year” in some circles.

I couldn’t wait because I’m be able to say “My SDR was 30 years ago.” For one thing it makes the math easier for me and the resident(s).

Because when I give them the year I had my SDR or how old I was when I had it a look comes over their face like I’ve just asked, Train A, traveling 70 miles per hour (mph), leaves Westford heading toward Eastford, 260 miles away. At the same time Train B, traveling 60 mph, leaves Eastford heading toward Westford. When do the two trains meet? How far from each city do they meet?”

I should also tell you that I often have to then explain what an SDR (short for Selective Dorsal Rhizotomy) is because they aren’t as popular as they used to be (due in part to the Intrathecal Baclofen Pump, I think). It’s funny because I didn’t know what it was for a long time, even thought I had it done, so I’ve had to educate myself because I realized I had to educate others. I even have a short description of every surgery I’ve had with my list of pervious surgeries. 1) To give people a heads up while they’re reviewing my records before an appointment. 2) I can’t spell Rhizotomy (neither can spell check).

I have mixed feeling about getting old, but this is one thing I’m looking forward to more than others.

Here are some basics:

I was 3. I remember it being around Halloween because my grandma decorated my room which included a very large, to a 3-year-old, Happy Halloween banner. My room had wallpaper with clowns on it, which is probably one reason why I fear clowns, practically clowns in hospitals.

 I don’t remember much about that but the surgeon who performed my surgery told me that he got a call from my mom once I was home asking what he had done because she found me either sitting on top of our piano or I had something in my hands that was previously on top of the piano and when she asked me about it my answer was “I climbed.”

It was done at local hospital by a surgeon who had just arrived. I was his first patient. We didn’t go anywhere else because it was the best fit for me and my family.

I was told I was getting “new legs” so when I looked down and saw my “old legs” still attached, because who wouldn’t want to see what new legs on your body looked like, I was confused. I was even more confused when people would come to visit and look at my back

I had PT Monday-Friday for a year at the outpatient facility associated with the hospital where my SDR was done, as well as a home program. I had OT as well but it wasn’t as intense as PT. Once the post-operative obligations and goals were met I went back to my normal PT routine of twice a week at a private PT practice closer to home.

I remember the first time I stood up and saying that my legs felt like Jell-O would be a bit of an understatement.

What I Thought I Knew Then:

I thought I was getting new legs, literally. It’s kind of weird how comfortable I was with the idea of having a different set of legs attached to my body. I mean, I didn’t wonder where they were going to get the new legs from?

I thought what was done was done. My SDR left me with decreased sensation in my legs and toes and some decreased or no movement particularly in my feet and toes. After my last surgery (fall ’09) I began having some feeling in my thighs and just last year I started to experience intermittent sensation in some of my toes. I don’t know how this happened or how common it is but it’s been interesting.

I thought everyone knew what was happening. It wasn’t until people with cameras started taking pictures of me during PT and asking my mom questions that I wondered what the big deal was. What I didn’t know then was that SDR was relatively new and I was the 1st patent in the state to undergo SDR surgery.

What I See In Retrospect 30 Years Later:

Would I have it done if it were my choice? I’d like to say “Yes” because I know my life would be drastically different. But in the last few years I’ve really started to question and think about what my life might’ve looked like if I hadn’t had an SDR. I don’t hold any bad feelings towards anyone but I do wonder, especially since my SDR was more extensive (from L1-S2) than what’s being done now.

I wouldn’t be as independent as I am now without it. I use a wheelchair on occasion for mobility, but I probably would be a full-time wheelchair user without it, and would probably need to rely on others more for care. In my opinion people focus too much on the ability to walk after SDR. Walking in itself does not make a life more meaningful. As I’ve said before and I’ll say it again, using a wheelchair has opened up my world more than it would be if I used crutches or used no mobility aids at all.

There you have it, my SDR experience decades after the fact, but if I’ve missed something you’re curious about let me know.

*A similar version of this post was published on March 7, 2016

Here I Go Again, I Guess

Remember when I said my future as a podcaster was up in the air?

Well it still is, I think.

Dan and I recorded a podcast mainly discussing the future.

If you listen to it you know that we tackle the quality content vs the content for content sake discussion.

And the time it takes to put a podcast together.

Then there’s the matter of throwing something into the void and hoping someone hears you.

But if nothing comes back to you it becomes like screaming into a void, eventually you get tired.

The thing is I’m not just talking about podcasting either.

I have a blog (which you’re reading).

A career.

A ministry to devote time to.

I love creating content for people but I’ve come to realize that I’m not a content creating machine, at least not in the literal sense.

Like many podcasters who recently took hiatuses, like Sean & Greg & Jennifer, I realized I need to take time for myself and things I enjoy rather than focusing all my attention on what others may want to hear about without actually knowing for sure.

I am not a factory if my heart’s not in it people can tell so I need to focus on quality of content rather than quantity of content.

So, for now, or forever, podcasting will be lower on the priority list (for me anyway).

Things could change however.

Here’s how:
-Send feedback whether it be on the podcast or my blog.
-Send topics, again whether it be on the podcast or my blog. It’s a lot easier to create content if you have a topic you know someone(s) is interested in hearing about.