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.

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?

I Pulled My Armpit?

I’ve been having issues with my right arm for months. I figured it was just lingering from my unfortunate encounter with a chair a few months ago. It would get better for a while and then not, and then get better and then not, and you get the idea.

I’m sure it’s not that big of a deal for most people but when your legs aren’t normal on a good day and your arm is sub-par you’re basically down to one fully functional limb on any given day.

I’m normally sore for a while after a trip too.

So, I just waited it out.

Until I thought maybe I should stop waiting.

I mentioned it to my trainer and he found a fairly large trigger point in the region of my scapula.

I texted a friend with a rehab background after my session to find out what she knew about it.

“Um, serratus anterior?……Basically the muscle on your side below your armpit.”


Wanting to know more about what I’ve gotten myself into I came home and looked it up for myself.


How someone can find an injury within this mess without the aid of additional studies is beyond me but I’m glad it’s possible, especially so early in the “Medical New Year” when I avoid any doctor related anything like the plague.

Being a swimmer with CP I’m realizing I have to be a different kind of careful when it comes to my upper body.  

Why I: Don’t Feel Obliged To Advocate

A tweet came to my attention recently that I feel I should address.

However, I must issue a warning that it hit a nerve (or more like stomped on it) for me.  It might even have ventured into “trigger warning” territory with me but you’d have to check with Mac & Katherine on that one to be absolutely sure.

Now it’s an honest question and if I wasn’t part of the CP community in the way I am now, if I were a parent instead (for example), I might have the same question.

As someone who has Cerebral Palsy and is pretty high functioning I’m probably going to get some kind of backlash for my answer, but might get some sort of support too.

In short, I do not feel an obligation to reach out to those who are more severely effected by CP.

Now if we’re talking about reaching out in terms of forming friendships with those who are more severely affected; I’ve felt like people tried to force the issue when I was younger whereas it’s virtually nonexistent now. I don’t think you should be friends with someone just because you share the same disability. For me it would be like everyone with brown eyes being friends. More goes into a friendship than one commonality.

If we’re talking about reaching out in terms of community advocacy, my answer is still no, but longer.

We are one community but we don’t act like it, more importantly (from my point of view) we aren’t treated as one community.

The way I see it we’re 3 major parts of 1 community, and each part has an element of self-involvement, which is its biggest asset but it’s also the biggest obstacle for greater unity in the CP community.

In case you’re wondering, the 3 major parts (again according to me) are:
1) Parents of kids with CP
2) Parents of adults (who can’t advocate for themselves) with CP
3) People with CP

There’s a reason why I listed them in the order that I did with CP often receive the least amount of support (based on my own experience).

I’m sure you’re heard the saying, “secure your own oxygen mask before assisting someone else.”

My whole life I’ve not been what someone or an organization was looking for:
-I couldn’t get a wheelchair as a child because I could walk.
-I couldn’t try out for any age group swim team because I was disabled.
-I couldn’t receive intensive post-operative physical therapy (ordered by my physician) because I wasn’t disabled enough.
-I can’t learn to drive from anyone other than someone appointed by the state because I’m too disabled.
-I can’t receive job searching assistance because I’m not disabled enough.
-I can’t qualify for assistance grants because I can work.
-I don’t receive the most basic medical care because I have a disability & I’m considered too old.

I was in my 20s before I realized help wasn’t going to come and find me, like it seems to do for countless other people. I had to go find it and even finding help doesn’t mean that I’m going to get help. It’s always been a running joke that I’ve never really fit into a mold or set of rules, but this was real life and not a joke.

I don’t feel obligated to reach out to those who are more severely affected by CP because there are more resources out there for them. Also I can’t advocate for everyone in the CP community because it is so diverse. I stick to what I know best, but if that ends up helping more of the CP community than great.

I need to put on my own oxygen mask before I can help anyone else.

The Practice Of Unremembering

Anyone who knows me knows that fall is probably my least favorite season (yes, I’d even take a snownado before saying yes to fall). The pumpkin spice craze is enough for me to give the season two thumbs down.

It’s been my least favorite season for as long as I can remember, but in the last few years it’s gotten worse. I had surgery in the fall, which was a positive, but many days recovery literally meant not leaving the house (or even bed).

1 year, 1 month, and 1 day after surgery I took my first independent steps; a good day, but a long time coming (so not as great as one might think).

Then people started to die.

I made a conscious effort to remember all these important days and it’s draining as hell. I’m not the biggest fan of crying, even in private, and there I’d be sobbing as soon as I walked in the door.

I was so concerned that I would forget something so “important” that I was slowly destroying myself emotionally.

I thought this year would be different.

Then a close family friend of close family friends died. Someone I barely knew when I knew them, yet I spent many nights reading comments online and looking for memorials.

I was trying to remember someone I barely knew.

I realized I had to change my thinking or I was going to drive myself crazy, perhaps literally.

I need to learn the practice of unremembering. It’s OK to remember, but to attach it to a specific date forever means (for me) that I’m living between sad moments to other sad moments, that somehow I can’t allow myself to be happy just because something else came before and took that spot on the calendar.

Fall may never become my favorite season but maybe I can make things a little easier on myself.

Do you have any hang-ups that you need to let go of?

The Road To Recovery

More than a few years ago, and at the same time it feels like last week, I was lying in a hospital bed recovering from surgery (actually I thought I was dying but that’s a minor point at this point).

I was just beginning my road to recovery.

And having to answer the question, “Did it work” or “was it successful,” for those of your in the healthcare field.

I have to be honest. I’m never sure how to answer this question, especially since a lingering quad strain came into the picture.

Did it work? Yes.

Was it successful? Yes.

All major goals were met and there have been no complications as direct result of the surgery.

But did I get everything I wanted out of the recovery process? No.

I was warned that one of the outcomes of surgery would be uncovering weaknesses that were, in a sense, hidden by my miserable malalignment (yes that is indeed an actual medical diagnosis) and boy were they right.

Sometimes I feel like I have monoplegia instead of diplegia. Which you think would be a good thing but it’s more like my right leg feels more like an added after the fact limb (maybe like a prosthetic?).

Sometimes I feel like I have hemiplegia, because my arm is hell bent, sometimes literally, on trying to compensate for my leg.

I wish I didn’t have to stay in an AFO, never mind even go as far as to get a second one made. Sometimes I feel so defeated by this one fact alone, but it’s really just accepting reality.

I’ve had to adjust to taking prescribed medication on a daily basis. I’m amazed how hard it is to remember to keep up on refills and orders for more refills, for just one medication.

I have more trouble with some of the most basic things, like climbing stairs, kneeling, putting on my shoes easily, etc., than I did before.

But I’m not in nearly as much pain as I was pre surgery. That alone is worth its weight in gold. Yes, I do still deal with pain on a daily basis, but I rarely shrink back at just the thought of running into the grocery store for 5 minutes. I still hate going to the grocery store, but it’s a pet peeve thing.

So when people ask me if “it worked” of if I’m “better” it’s not an easy answer.

It depends on what your definition of “worked” is. Also I will never be “better,” assuming by “better” you mean “cured.” I started my life with CP & I’m going to end it with CP.

I didn’t have the recovery process I envisioned. But it could’ve been a lot worse. The surgery itself could’ve completely backfired no matter how much hard work I put into the recovery.

Although, if I’m being honest here, I do wonder what would have been possible under the original plan. Where I’d have as much PT as my body could take and my outpatient post-op care team was well coordinated as my pre-operative and hospitalization teams. I was facing an uphill battle even if I had had the best possible circumstances so when things didn’t go, and wouldn’t be going, as planned I started to panic.

The recovery process may technically be over but I’m still figuring things out, the good, the bad, the ugly, and the in-between.

Most importantly I’ve seen what it takes to get what you want. It’s not always easy but it’s worth it, one-hundred times over.

The road to recovery is a lot like closure. You want it and work towards it but it never ends up being how you pictured it so you just keep going, because there’s always more road to travel ahead.

Needles, And Tape, And Meds, Oh My!

Remember when I wrote about getting Botox and trigger point injections. Well last week I went for a follow up and follow up trigger point injections.

Yes, I willing went to get stuck with needles at the full digression of a medical professional.

No, I am not insane. I promise.

So I had trigger point injections (no Botox).

It’s never the most pleasant experience but if you get the desired results it’s worth it, even this time which was highly unlike all the other clinic visits (but I’ll spare you the details).

We also talked about the possibility of changing up my meds, for muscle management since I’m finding that I’ve becoming more “loopy, droopy, and stupid” but I’m not getting much in terms of less tightness and spasms in my legs. I guess it is possible to build up a tolerance (which I could’ve guessed but I wish someone had come out & said it anyway).

The problem is every medication has its drawbacks and there’s no guarantee that any of them will work any better. In fact I wouldn’t be surprised if none of them work well for me, at all. I mean, anyone who saw me during the short time I took B@clofen calls it “the crazy stroke drug.”

A few weeks ago I got into a discussion at PT that ended with my ankle being taped up, for therapeutic purposes, so I snapped a few pictures for the appointment for a visual, because my brain is fried.

He supports the tapping since it can have really great benefits. I’m not sure how I feel about it long term but we’ll see how things go. Knowing how my body has been the last few years, who knows?

Once we figured out how long the effects of the trigger point injections lasted a plan was made and out came the needles (well needle).

Normally I go sans any anesthetic, because I’m all badass like that.

Actually it’s more like I hate cold sprays or creams and get post-anesthetic headaches like it was my job (that last part I had forgotten about until I was half way home and the car spun about 180 degrees, thankfully not literally).

And I am a badass like that.

But my doctor wanted to make sure my muscles were “jumpy” because he was in a trigger point and not because he stuck a needle in my leg. So I sucked it up and took the spray, begrudgingly.

A few minutes later it was done and I was out the door, all except for the fact that one of my socks looked like it belonged to Curt Schilling.


Apparently I was going to be a bleeder too; again, not my usual M.O, but it’s not like I can control it.

The bruising is more than usual as well but that’s always an unknown.

The plan from here is to go back in the fall for follow up and the possibility of Botox and/or Trigger Point injections then.

All About That Botox

I’m not the biggest fan of Botox injections. It’s not because of the needles or even the insurance battles, although neither of those helps matters.

For me, Botox is like a popular movie or fad; it’s never lived up to the praise or expectations.

Thankfully my doctor feels the same way, at least in terms of using Botox as a treatment option for me.

However last year we agreed (he suggested while I rolled my eyes) to try another round of Botox injections. Maybe I didn’t need them on a regular basis but once a year would be good enough to keep the potential for more serious issues at bay.

I thought I had a “get out of jail free card” in the form of scheduling issues which just wouldn’t work with insurance requirements. However since my insurance had changed in the last year there were no such requirements to coordinate with my schedule.

Less than 5 minutes later I was getting Botox injections. I went with it, but I kept my expectations low, as in bargain basement prices sort of low.

But it worked, if we’re talking about if the intended goals were met.

I sat through 3 hours of class for 5 days straight with minimal discomfort. Because who can sit that long in class and be perfectly content for the entire thing? But I think we can blame lack of sleep for the discomfort, because who can be perfectly content when overtired?

I kept up with my classmates and managed to stay, fairly, well rested without much difficulty. And honestly that last part can be difficult to achieve even during my regular schedule, or at least as regular as my schedule gets.

So we agreed to revisit the “summer Botox only” once summer got closer.

Because my goals for summer are a lot more direct, in a sense, than during the rest of the year. And if something goes “less than ideal” then I have a more ideal compensation plan (aka long periods of sitting).

Knowing my fondness for Botox injections I also inquired about doing trigger point injections as well (because my track record with those is great too so why not ask for more unpredictable factors that just might not work out so well).

Although it should be noted that sometimes an injection of Botox “doubles” as a trigger point injection if the point of injection for Botox is in a trigger point, or something like that.

I hate the maintenance that Botox requires, however I’m hating having trigger points just as much so yes I did ask to be stuck with a fairly large (for the needle-phobic, anyway) needle more.

However I think if we were to rid my legs of every trigger point at one time I probably wouldn’t be able to stand up, but don’t quote me on that one (because anything is possible, or not).

Things have worked pretty well this summer too.

The bigger problem was having a morning class & an afternoon class, both requiring lengthy and heavy reading. The more tired I got, the more uncomfortable I got, which is pretty par for the course regardless of the situation.

People often ask me what I think about Botox injections as a treatment option for managing Cerebral Palsy and I always struggle with how to answer without worrying that I’ll sway someone’s opinion (especially if they’re acting on behalf of someone else). Botox works great for some people and that’s great for them. But for me it’s always a roll of the dice, at least we’ve found one situation when it can be beneficial.

Stress? What Stress?

Did you happen to read my last post about how possibly busy I’m going to be soon? Now you want me to talk about how I manage stress?


Honestly I’m not that great at escaping stress on my own. It usually takes someone else to pull me off the metaphorical ceiling.

I am not good at managing stress. In fact I think I have at least one nervous breakdown before getting anything important done, like large papers or presentations.

I try to take at least one day a week “off” to give myself some rest time, so I don’t have a complete meltdown every week. But that doesn’t mean that that method works all of the time.

I’m incredibly lucky to have friends and family who will help me de-stress whenever and wherever necessary.

Even if that means me showing up on their doorstop on a semi-whim partly seeking to take shelter in their guest rooms (aka my 2nd home) hoping to never be heard from again.

Seriously I’ve gotten some of the best sleep in those beds, including but not limited to a 12+ hour night’s sleep before or after a 3 hour nap during the day. Yes, my body needs a lot of sleep at times & I love to indulge in it whenever possible.

That being said it should come as no surprise that one of my favorite (and best) ways to de-stress is to spend time with family and friends, especially since that’s one of the first things to be dropped when I get busy.

I especially like going on road trips with people I really like. I don’t enjoy being trapped in a car for a long time, and I have little to no interest in traveling across North Carolina ever again, but it’s usually a good time solely for the company, the conversation, and of course, the music.

I’m not the best when it comes to stress management (or avoiding stress at all) so I love when I can unload my stress for a while.

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).