Review Session

I’ve been riffling through my past writings, for various reasons. I can’t say it’s been all fun rereading everything but it has been interesting.

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Two years ago I was pre-surgery*

One year ago I was post 1 round of Botox*

*I did indeed have to search the archives to remember this

This year the MDs & Ph.D.s are pretty much hands off.

Progress indeed.

Things aren’t prefect.

But a CP body isn’t your typical definition of perfect.

“It doesn’t get easier or harder. It just gets different.”

The idealistic picture I had in my mind two years ago is a distant memory. As in so distant I barely remember the picture, other than I had one.

The real picture is coming into focus.

I’m sure there are things that could use fixing. In fact I know there are. They’ve just been put in the “wait and see” category, and it looks like they’ll be staying there.

Do I want them fixed?
Of course.
But I don’t know how much difference it’ll make overall.

Plus I’m in pretty awesome physical shape.
Going in for more work would mean “tearing down” my hard work.

That’s the biggest negative for me.
Further improvement would come at a cost.

I’m not 100% with how things are.
I’ve made that pretty clear to a lot of people.

But who is really, truly, honestly happy with themselves 100%?

Even if I can still see room for improvement that doesn’t mean I have to bow to the surgical gods for it.

A big revelation for me I admit.

I can manage my own trajectory.
Modern medicine will always be there.

*A similar version of this post was written on September 2, 2011

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On 2 Years

8 years ago my life was at a turning point in my life. I had been in pain for so long and I couldn’t take it anymore. I had to do something about it. 2 years out I wrote about the progress after the turn. I thought I would see my life more differently 8 years after than I would 2 years later, although there are a few things that are different now the general sentiment is pretty much the same.

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A lot of people see scars as defects, at least detection of defects.
I look down at my scars and see differently.

Improvement.
Teamwork.
Hard work.
Skill.
Courage.
Faith
Obedience.
Accomplishment.
Risk
Hope

Just to name a few.

It took a long time to even get to that point 2 years ago.
Lucky for me there are times I’m like a dog with a bone.
Although I did feel like quitting plenty of times.

All I wanted to do was be who I was.
Rewind the clock.
Not be in constant pain.

It didn’t even occur to me that a fixed body would mean possibility & ability to actually become better. Even when the idea was presented to me I had my doubts, actually I didn’t think it was possible, just someone being hopelessly optimistic.

To borrow a line from Soul Surfer, “I don’t want easy, just possible.”
Well someone did, it just wasn’t me.
I was just waiting until I felt back to normal.

But when I wasn’t paying attention I was getting better.

Climbing up stairs without pulling myself up or using a handrail
Stepping off a curb
Being able to dress myself without falling over
Jumping
Walking backwards & sideways
Stopping at a street corner before crossing
Finally learning to walk with my heals with some consistency

All things most people without much thought at all.

It took a lot to get this far:

1 failed Baclofen trial
10 hours of surgery
Months of PT
Months of Pilates
Self-motivated pool sessions
Weekly one on one gym sessions
2 rounds of Botox

But I did it.

Everyone kept telling me the hard part was going to come after. I have to say they were right, as I’ve said; two years ago, the hardest thing I had to do was take a 10 nap while everyone else either worked or waited on me.

“We’re done,” meant “Your turn kid.”

But like the getting better part, the hard part happened when I wasn’t looking.

As Hemmingway wrote in, The Sun Also Rises, “Gradually, then suddenly.”

If I did this, what else can I do?

*A similar version of this post was written on September 13, 2011

Grad School: The Last Summer

This summer was bananas, all kinds of emotions going full throttle bananas.

I can’t believe I’m actually writing about this.

I learned during my first summer than students often mark their time by summers, and there’s a certain satisfaction that comes with saying “this is my last summer.”

I’ve watched many of my classmates go through their last summer, each has been different, each having their own positives and negatives. I knew what I wanted to do and what not to do. I wanted to end on a good note and have the best experience possible.

I even consulted people and made a plan to have a full yet enjoyable summer.

Very little of the plan went according to plan, as is usually the case.

This summer went much like last summer in the respect that a lot of my classmates and I had the same classes so we spent plenty of time together over a short period of time (although not really because we started courses around the same time).

One thing people get wrong about distance learning is that it’s isolating. Yes, there is an element of that but, if it’s a small program you’re anything but isolated. In fact, I think there was only one person I didn’t know before class began (and I kept referring to her as “the new person” which is completely false in terms of remaining course load).

The first week was fairly relaxed, compared to previous years, it was the only time I didn’t have a morning class. A luxury I had been wanting for years but the opportunity never came about & I chose to forgo the meal plan again so while people were down at breakfast and/or hurrying off to class I was still in bed indulging in well overdue Netfl!x binging.

And by noon I was bored out of my skull.

I took care of a few things, like tuition, scholarship requirements, etc. It was nice to get all of it out of the way but it didn’t take very long so it was shaping up to be a long week and it was only day one.

I did the majority of my course work before arriving and my first presentation wasn’t until the end of the week so I was able to watch everyone’s and make adjustments (and practice, over and over).

If you follow me on Inst@gram you saw how much detail I put into my presentation, although it may have come off fairly low-key.

The week closed well but I couldn’t help but keep thinking about my presentation. It could have been better, I think, so there was plenty of work to do before I turned in the final project (hell there’s still a lot to do & grades are in).

The weekend was pretty low key considering how much work lay ahead. I think what helped was the fact that we were all in the same boat so if someone was struggling (which I was, I just didn’t know it) there were other people to pick you up (and in my case 3 or 4, I can’t remember).

Pro tip: Make friends with someone who can pack anything (& nearly everything) in a suitcase without

Because my presentations (or really practicum requirements) were scheduled for the beginning of the week it meant that I had a lot to do in the span of less than a week. I wasn’t a big fan but at the same time I liked the idea of being done on Tuesday, because the 2nd week of classes came with a mandatory early wake up & Theological Reflection at night.

This summer was unlike any of my previous summers for many reasons but mainly because there were many group activities outside of class. Meals, for the most part, were together. We saw more of the outside world, together. Whenever someone was going to do something they asked who wanted to come along. In one way, it was how we made the most of our final time together.

This was the summer I couldn’t wait to have, my “final summer.”  It’s something that gets hyped up in one way or another by everyone, even yourself. There are certain rites of passage that you don’t get to have until that “final summer.” What often gets overlooked as the emotions that come along with it, at least for me.

While I’m not done with school yet the experience is certainly coming to a close. The blessings have been given the good byes (even if just temporary) have been said.

It’s time for a new group to start their countdown to their own last summer.

Summer Shedding

My summer has been full, as usual (but more on that later). My room is full of files of stuff that just reinforces my fullness (and lack of organization). But there were 3 shirts in particular that just kept sticking out to me, and recently I’ve had enough.

By the end of the day I ended up getting rid of nearly half of my clothing & shoes, starting to dispose of old prescription medication, and cleaning out my inbox.

I felt better that the deed was finally done but the piles seem to have reappeared, or maybe these are just the piles under the piles.

I’m sure you’ve heard of spring cleaning but this is more like a summer shedding.

I started with the three shirts and by the end of the day there was a mountain of clothing and shoes at the top of the stairs, and some of my drawers still can’t close easily.

For a long time I was worried about getting rid of a lot of things all at once because I had be told, and multiple times, that if someone gets rid of the majority of their belongings at once it’s a sign that the person is contemplating suicide. (I recognize the flaws in this logic upon hindsight, and current trends of minimalism)

Although I’ve gotten rid of a lot of stuff I still plan on doing it again, and soon, sort of a “round 2,” in case I changed my mind on something(s).

Truth be told there’s a lot of stuff I would like to rid myself of but I can’t, at least not anytime soon.

As much as I was dreading getting rid of so much stuff at once I felt much better about it once I got started. I did get sentimental about things but I was able to get past most of that and see the bigger picture.

Not to mention wonder why on Earth I saved so much stuff. What was my reasoning for it, at one point in time?

I kept finding myself jealous of people who have had to move multiple times in their lifetime.

I’ve been fortunate to be able to have a “home base” my whole life so even when I have moved I haven’t had to worry about taking everything with me (or worry about having somewhere to put it all when it came back).

What’s that they say about the grass being greener?

I don’t think much of my life will change from this experience, other than the fact that I’ll probably do deep cleanings more frequently, but I’m close to embarking on the next step of my life. I can’t have a bunch of “stuff” to leave behind if the opportunity presents itself.

Email Chains & Religion Humor

The days of email forwards are pretty far gone at this point, but there’s one I still quote on a regular basis. Not because it’s profound but because it’s really funny, it’s probably not entirely appropriate but I still like it. I was wishing I still had a copy of this very email and lo and behold I do (one of the benefits of being a long time blogger is that there’s a good chance you’ve published something, at least similar, somewhere).

– We like to keep Mass interesting. We sit, stand and kneel, in no particular order. Probably just to keep the blood flowing.

– It’s not merlot and Ritz they’re serving; it’s the Flesh and Blood of Jesus. No, really.

– Forget a big meal afterwards, just pick up some of the breakfast tacos they’re always selling after Mass

– Purgatory.

– We all have 20 cousins. On each side of the family.

– Infant Baptism isn’t dumb; it’s after-life insurance.

– $5.00 in the collection basket is the epitome of generosity. Anything more than that, someone has just hit the lottery.

– A missal is a book, not a weapon. However, it has been known to pull double duty.

– The signs we make aren’t just a mark of respect, they’re a lot of fun to do.

– Every Catholic Guy tries to sit next the really hot girl they like at Mass. This is because they really want to hug during “Peace Be With You” and hold hands for the “Our Father”

– We really like statues. A lot.

– After every confession, everyone hits themselves on the head. This is because they have realized that they forgot that really big sin, and they know that it’ll hang over their head til the next time.

– Contraceptives? Why?

– The 14 Stations has nothing to do with TV.

– “Peace Be With You” is just a way to meet pretty girls.

– We’ve always been taught that celibacy til marriage is the only way to go, forever and ever, amen. That being said…

– “Sin on Saturday. Pray on Sunday. Confess on Monday”.

– The Virgin Mary is not a God and we don’t treat her as such. But she is without sin, gave birth to Jesus and did it without having sex. That warrants more than a little respect.

– We actually get all the jokes in Dogma.

– There are two very different, irreconcilable factions in every single church in the world. They are known as the Saturday or Sunday Mass bunch.

– St. Patrick drove all the snakes out of Ireland. SNAKES.

– Bake Sales are a way of life.

– Priests have been giving us alcohol since we were little kids. No wonder any one of us can drink Protestants under the table.

– Mass is nearly unchanged after almost 2000 years. We’re a little stubborn.

– Catholic School Girls.

– The Catholic Our Father is different. And longer. And better.

– We all know Da Vinci code is bogus and inaccurate. Yet we’ll still read it if nothing else is goin on.

– We have Midnight Mass so there are no interruptions on Christmas morning

– There’s no way to explain it, but Catholic girls are just scorching hot.

– There’s no need for impromptu prayer; you can always fall back on the Rosary

– It’s not uncommon for just one family to take up an entire pew or two.

– Boondock Saints is the greatest movie ever. E-Ver.
– Confession. Enough said.

– When in doubt, say a Hail Mary.

– Who created Family Guy? Oh yeah, a Catholic!

– Whenever anyone in Star Wars saga says “May the Force Be With You”, we get the urge to say “And Also With You”

– The Pope does indeed wear a funny hat. But it’s way more interesting than Joel Osteen’s suit and tie.

– We’re the oldest Christian religion. Period.

If you appreciated, chuckled or even smiled at some of these, you’re not a wacko. You’re just probably a member of the one of the oldest and largest religions in the world. Open to all Catholics around the world.

*A similar version of this post was published on July 17, 2007

10 Minutes, 10 Hours, 10 Days, 10 Weeks, 10 Months, 10 Years

The memories that pop up on social media seem relentless this time of year.

I don’t mean that in the negative way that it sounds either, but I’m not sure I can really come up with more adequate words.

August is the month I flew to Portland and made my way to Washington State.

August is the month I made my final preparations for a full year of rehabilitation.

August is the month friends got married and others took their first vows, on the same weekend no less.

August is the month I first went Chicago for a week, not knowing that it would become a yearly event.

August is the month friends took their final vows.

August is the month I’m buried under numerous deadlines, and social engagements to juggle on top of that.

It’s so many memories crammed into on month that it’s hard to keep track of how long ago they each were.

Whether they were 10 weeks ago, 10 months ago, or 10 years ago…….

They all seem 10 minutes, 10 hours or just 10 days, away.

It’s getting harder and harder to remember when they all occurred, other than it was August; I’m not sure if that’s a good thing or not.

I’m sure at some point it will all even out, but that’s not the case, at least right now.

For now, I’ll let the memories run together, until others join them.

I Can See (It’s Not A Miracle)

I put my goggles on the same way each time, or at least I try to, it’s part habit, part superstition. So, when someone asks me about my goggles, like my coach did in the fall, it sometimes catches me off guard.

“Are those prescription goggles?”

I look down at my rainbow-colored goggles that clearly don’t have prescription lenses.

“You should get some, they’ll change your life.”

I’ve worn glasses since I was in preschool but I’ve always made do in the water; the back line was always wide enough and black enough to see, and after a few laps I can judge my approach pretty well, I know what numbers look like all blurred so I wouldn’t get into the wrong lane, or so I thought.

I looked up prescription goggles online and they aren’t any more expensive than the non-prescription ones, but I still put it off, for some of the seemingly irrational reasons available.

Like, not knowing what my prescription actually was. Honestly, until this process of goggle buying I did not know anything about my glasses. I have a guy who knows and I’m more than cool with that. After I called him and sought his advice I made a reluctant purchase, because they weren’t going to be my ideal goggles.

When they arrived, I looked at them with displeasure; they looked like the goggles most people wear (and now I know why). I spent money on something I didn’t really want and now I was just going to lose them, it was only a matter of time.

I wore them to practice, and I could actually see. I could see the clock, the lane numbers, I could see the walls from further away, and it turns out that black line wasn’t so clear before after all.

(It reminded me of Shelly’s post about her son’s experience with goggles)

I can even see the board after a race, which I always wanted to be able to see, but I really have mixed feelings about it.

But things still weren’t perfect. I still wanted my old goggles for one reason, they’re mirrored.

I’ve worn mirrored goggles since their invention, or close enough. It’s what I like best, and it turns out they do have added functional benefit, like keeping lighting glare out of my eyes. So, I bought another pair of goggles.

They still aren’t what I want but they’ve made things so much clearer for me, literally, so I really shouldn’t complain about it. Truth be told I’d probably still be wearing the same rainbow-colored goggles if my coach hadn’t noticed such a seemingly tiny detail.

Free The Feet (part II)

I’ve readjusted to life with an AFO, I guess. I’ve found a few positives to it too. Like having “walking shoes” and “sitting shoes.”

It may seem like every shoe loves dream but it took a little accepting from me. I hate having shoes everywhere so the fewer shoes to have around the better.

When my friend was ordained a few months ago I knew I needed to buy shoes, because I literally had nothing (and when a friend is getting ordained you make exceptions for them).

I found a pair of shoes I actual liked and didn’t worry about whether or not I could balance in them. I just made sure they fit my feet and I could get them off quickly if I did have to get someone in the event of an emergency.

They aren’t the perfect fit but they did the job and with any luck they’ll continue to do the job on future occasions (which is another requirement for me when it comes to footwear).

A common topic you’ll find around the internet is CP & footwear; in fact, there are blog devoted to it.

There are many other factors to consider besides, “do they have my size?” or “these are a nice color.”

In fact, those are often the two things at the bottom of the list of requirements.

Can I afford to buy two pairs of shoes? (Because sometimes bracing requires a bigger shoe, or your feet are literally 2 different sizes).

Can I manage to fit into one pair of shoes? (See above reasoning)

Can I modify them as much (or as little) as I need to without extra cost?

Can they last me more than 5 minutes?

Can I walk in them comfortably?

Can bracing fit in them without much added time or damage?

Can I wear them safely without added support? (Because sneakers aren’t exactly dress wear)

Do they have any potential for creating pressure wounds?

And on and on, and on……

While I may never have a “Cinderella moment” with any form of footwear I’ve learned to appreciate the “little victories” when I can get them.

On The ADA Anniversary

I’ve often wondered if the ADA creates more problems than it solves for some, if not all, people with disabilities. It helps A LOT, but it also causes a lot of headaches.

I’ve come to realize however, that the ADA isn’t really for people with disabilities. It’s for the people who can’t even imagine what life is like to live with a disability.

Kind of like how birthday parties really aren’t for the people they’re thrown for but for the people that go to them.

Kinda.

Without knowing it I managed to grow up just as the ADA was finding its “sea legs,” which probably explains why so many aspects of my life have become, in a sense, easier even though my mobility had had an endless ebb and flow.

I once heard it said that, “those who don’t need the law are truly freed from the law,” or at least that’s the best my brain remembers it as.

The idea being (I think) that we wouldn’t need as many laws (or any) if everyone operated with the same level of moral decency.

As great of an idea as this is I doubt it will ever happen, ever. Sorry all of you who dream of world peace.

It would be nearly impossible for someone to be able to imagine what it’s like to live with a disability, unless they do in fact live with a disability themselves; besides the fact that imagining it and living it are two different things.

That’s why the ADA is so important.

It gives people a clue into what’s needed in order for people with disabilities. Although it should be pointed out that what’s deemed ADA compliant doesn’t mean it’s accessible for those who need it to be, but it’s better than nothing.

(So if you don’t know anything about the ADA feel free to read up)

As much as I (and countless others) benefit from the ADA there always seems to be something new to learn.

Such as how many loopholes there are.

Like the loopholes for already existing buildings and/or religious institutions.

As a Catholic who works in a building that’s been “grandfathered in” (multiple flights of stairs and no elevator) I curse such loopholes often.

It would be nice if there were less (or no) loopholes in the ADA but that’s only a short term dream. Someday I’d like it if the ADA was an afterthought, making it in a sense unnecessary because access for all is a natural thing.

It seems so wildly unrealistic, but I can hope right?

*A similar version of this post was written on July 22, 2014

Free The Feet

One of the interesting things about rebranding a blog is that you have something of a stockpile of posts to pull from, whether it be for memories, new ideas, or even reposting. I wrote the following 7 years ago, almost to the day:

-I don’t like shoes.

-I don’t like feet more than I don’t like shoes.

-My dislike for feet has nothing to do with how unattractive my feet actually are.

-My college campus was the land of flip flops, even more than most schools.

-I have a friend who promises his children won’t wear shoes until they’re at least 5, and even then not in the home.

-More than one of my friends gave up wearing shoes for Lent, and no one was fazed by it.

-I use to know someone who never wore shoes, even in the dead of winter.

-I can only wear sneakers.

-Only on rare occasions can I wear shoes that are not sneakers.

-I use to require getting a new pair of sneakers each month.

-My current shoes have lasted over 6 months surprising my exercise physiologist and new physiatrist, but for different reasons.

-My friends use to declare “free the feet” days during college.

During my last post-op visit I had several things on my mind. I’ll spare you the nitty gritty but having met with my physiatrist the day before & having opinions from the exercise physiologist weighed heavily on my mind. One of the biggest reasons I moved my Orthopedic care to Boston was that things are more comprehensive and having to coordinate my own care for the last few years had become exhausting and seemingly unnecessary. But I still have trouble letting go and not hand delivering mounds of paperwork to each doctor and/or specialist during each visit (I have printable files I regularly update as well as the “official” stuff) or putting my two cents in here and there in the form of, “Well ___________ said that_________________________ and it makes sense to me so……….”

I’m a rare crossbreed of nosy, self-controlling, snitch-of-a-sponge. But 9 times out of 10 I will deny this fact.

At my first post-op appointment, I was given a prescription for a new AFO, a “downgrade” for the one I had been wearing for the last few years. I wasn’t happy about it because (1) I actually liked the AFO I had and felt it only needed an adjustment or two (because I’m a professional after all) to be able to carry on, (2) I REALLY didn’t want a new AFO after all the work I had done. But I relented with the understanding that within a year I’d hopefully be able to rid myself of AFO(s) altogether.

“Can I stop wearing the AFO at least sometimes because….(I’ll spare you the pleading)”

“Well let’s see.” (I hop off the table take barely 2 steps) “Yeah, you’re fine. But after the Botox you’ll want to put it back on…… (tra la la)”

So I went out and bought new shoes, because an AFO can stretch out a shoe like nobody’s business. They aren’t my favorite looking but the fact that I’m wearing them AFO-less puts them at the top of the list by default.

Not really remembering that I’ve worn an AFO for years meant I was grossly under prepared in the sock department. I think I have 3 pairs that don’t come up to my knees. No matter how many I actually have it’s not nearly enough. Lucky for me my mother has an abundance of socks. Well not really, but she has a good number she doesn’t wear so I’ve become the proud owner of them, again by default.

I’ve adjusted to life without an AFO pretty easily & rather well I might add, but that all ends on Monday when I get injected with Botox.
I’m hoping going back to the AFO is only a short term deal, or else these last few weeks have been a major tease.

At least I’m not going back to lock-up. That was an experiment that I will never repeat for as long as I live, and neither will my orthotists.
For now I’ll be eagerly anticipating my next “Free The Feet” day.

*A similar version of this post was written on July 16, 2010