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.

——————————-

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

Advertisements

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.

——————————-

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

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

Kilimanjaro

I love mountains.

I love looking at them. I love wondering how many people are climbing them at that very moment. I love thinking about how many people have climbed them. I love thinking about how many people will be repeat climbers (or hikers).

Even so I have healthy limits.

I know portions of Rainier are attainable as are Olympus.

Kilimanjaro is off limits.

Really cool, but off limits.

I hate treadmills.

From the first time I was ever put on a treadmill I’ve hated them. For some reason it became the first step to attempting to transition a patient from PT to a self driven exercise program, kind of hard when no one could come up with anything other than a walk on a treadmill.

When the treadmill first came up while at the gym, because we usually discuss to some extent before do, I divulged my hatred for the machine, it bores me to death. I need to be entertained to some extent while on a treadmill.

If I could pull an Oprah and play scrabble on my iPad while walking that could work.

But that would require an iPad.

And the ability to spell.

Maybe that wouldn’t work so well.

So the treadmill is used sparingly, because the word, “bored” is right up there with “can’t” or “no.”

Even so every few weeks or so I get on the treadmill (with the trainer or exercise physiologist standing by because I will get off) because it’s one of the few ways my glute muscles will actually get going (or “fire.” “Firing” muscles are always a good thing, so I’m told)

What is done on the treadmill is usually left for when I’m actually on the treadmill, and most of the time it’s for very good reason:

“I call this Kilimanjaro.”

(I clutched the treadmill to override the urge to jump off of it)

Apparently “Kilimanjaro” means for every minute on the treadmill you increase the incline by one. Then you do it again.

(I think, I deliberately wasn’t watching the settings change. I just walked.)

It takes about 20 minutes.

(The longest I’ve EVER been on a treadmill. EVER)

Do you want to know the most shocking part?

I didn’t die. I didn’t even want to die by the end of it.

I just wanted to be done for the day.

(Which didn’t happen)

I’ve done my Kilimanjaro. What’s yours? Have you done it yet?

*A similar version of this post was written on January 28, 2011

BYOC

What does one do when injured by a chair and needing to be extra careful about posture?

I’m fortunate enough to have a chair that’s build for me, meaning it’s designed as specifically as possible to my unique posture needs.

I’m talking about my wheelchair.

There are additional benefits to having a wheelchair that people don’t think about, and this is certainly one of them.

Having somewhere to sit that you know won’t cause pain or discomfort doesn’t seem like a big deal, but for some people it is.

You’ve heard of BYOB? Sometimes I BYOC

This isn’t a new thing for me, but as the years pass I find more times when it is beneficial.

Once I remembered I had the BYOC option I remembered the 1st time I write about the topic.

____  

The holidays always make me think of recovering from surgery. My last surgery was in September, the one before that January, my SDR was in October, and I even had a large birthmark removed during the holidays one year.

Did you know some surgeons frown on having surgery requiring a long recovery period in the summer? Something about being more inclined to be more active in warmer weather, I think.

Three years ago (almost to the day) I was given the O.K. to stand up. So I did. I’d love to tell you that I strolled out of the clinic that day but it doesn’t quite work like that when you’ve spent months off your feet at all costs.

This wasn’t the first recovery process I’ve dragged my family though but this one has been different than the others, at least to date. This one involved the shouting, “Come get Sarah in the house,” for one thing. And even that became shockingly normal after a few tries.

I thought I’d be “up and around” by Christmas that year. A month was enough time to learn to walk again right? (Plus it wasn’t my first time at this rodeo either) I wasn’t thinking I’d have to maneuver a wheelchair though a house crammed full of people.

But when the day came I was still relying on wheels to get me from point A to point B so my cousins carried me into the house. I rolled in and quickly turned to the left.

Christmas day in my family is legendary. There’s a running joke that if you return for another Christmas you’re probably going to stick around for a while.

We’re the only family (that I know of), that won’t go buffet. It’s “not how Christmas should be,” we all have to sit down at the table and eat, together. The table runs the length of the dining room, literally. So if you walk in the “wrong” entrance you walk into the table.

I’ll admit it’s an intimidating table, and this is my normal.

Trying to fit a wheelchair at a table that’s had to adopt the mantra, “just because a plate can fit there doesn’t mean a person can;” have I mentioned that we have to borrow chairs from other people/places in order to make this work?

So fitting a wheelchair at a Christmas table……

Thankfully my request was honored and I was privileged to sit on an end. It was pretty easy actually.

This one year my cousin brought his girlfriend to dinner. She was trying to be polite asking my cousin questions as quietly as possible. I say she was tying to be quiet because it’s impossible to do anything without someone noticing when you sit that close to each other.

“How many people are here right now?”

My cousin looks down the table and makes an educated guess, but his younger brother (& one of my carriers) and I overhear the guess and feel compelled to jump in, it’s what we do.

“We needed 29 chairs, so there are 30 people here.”

“That makes sense 29 chairs, plus me, so yeah 30 people”

“If we needed 29 chairs then there are 29 people here.”

“No there isn’t, I brought my own, so it’s 30”

I just had to throw a joke in there somewhere, because all of us trying to do math isn’t funny enough.

“There are 29 people here.”

“She brought her own chair. There are 30.”

“No”

“Sarah brought her own chair.”

Error in judgment realized, joke understood, the whole section of the table burst into laughter, girlfriend sits there confused, which is probably part of the reason she didn’t return the next year.

The things I do to get to sit at the foot of the table.*

*To avoid confusion one end of the table is called the “head” and the other is referred to as the “foot.”

*A similar version of this post first appeared on an old blog on November 29, 2012

Quotation Inspiration

Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.
– Saint Francis of Assisi

I noticed this quote in the signature of an email, probably because creative signatures are becoming a rarity.

It made me think of living with CP & working alongside medical professionals for effective care.

Start By Doing What’s Necessary.

My mother “likes”* to tell this story where other moms of kids in my peer group would invite me (and my mother) to their play group. My mother would say that although it would be nice to go to play group but that I had PT at that time (usually). The mother who had invited us to said play group would usually reply, “Can’t you just cancel that?”

My mother’s answer was “No.” Her answer was always “No.”

She’s often said that she didn’t want to sit around and make small talk with moms that didn’t understand why PT was important anyway. She didn’t want to sit around and listen to people brag about their kids either.

I don’t fault my mother for her response. I didn’t even know how frequently she had this conversation with people until a few years ago. If anything I’m glad she kept all of this from me, because I would’ve resented her when she said, “No,” so it all worked out for the best.

Socializing is important, but when you have a disability so is therapy. Therapy allows an individual to learn what they’re typical peers already know. It’s a necessary part of growing up, that is if you want to grow up and be able to keep up with your peers.

There are plenty of other examples that I could’ve used to illustrate the “necessaries” of CP, but PT seemed to be the obvious choice since I had a good story to go with it.

Then Do What’s Possible.

Doing what’s necessary enables you to better do what’s possible, and sometimes enables you to be able to do what’s possible, at all.

You may not be able to do something the same way as your peers but you can do it, and with style!

The cool thing about doing what’s possible is that the more you do the more you can do, even if you weren’t able to do it before.

The best thing about doing what’s possible is…….

Suddenly You Are Doing The Impossible.

This is a dead giveaway given the first 2 points, but I can prove to you that it’s true.

I never took care of myself physically. I did what was necessary, pretty much, but that’s it.

I never took care of myself, until I saw what taking care of myself actually meant.

The only reason I started going to the gym at all was because I had met my post-op PT goals yet I wasn’t able to do much else.  I could dress myself but unable to get clothes to dress myself with. I could get up and down a single stair safely, but only if I had to.

Going to the gym is different than going to PT. It isn’t any easier, but it does change things up a bit. Some goals took longer to achieve than anticipated but I got there. I had every intention of stopping once I was “better” but things didn’t exactly work out that way.

I’ve lost some ground recently BUT in the last few years I was able to do things I’d never been able to do before; I honestly thought some of them were impossible.

So, “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.”

*I say “likes” because this is something she doesn’t bring up at every opportunity but it’s one of those stories that I’ve heard enough times that rolling my eyes each time I hear it has become an automatic response.

*A similar version of this post was written on March 6, 2014

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

One Foot

went in front of the other, and then repeated the process.

shoes

1 year, 1 month & 1 day after I took my last steps.

boots

I haven’t stopped since.

imag0504

*A similar version of this post was written on October 11, 2011

I Don’t Believe In Miracles

One of the things I always admired, and liked, about the Catholic Church, even when I walked away from it, was their necessity to validate miracles. The main reason being, I believe people overuse the word “miracle.”

I’ll give you an example; I’ve had to relearn to walk multiple times (3 or 4, I think). Each time was during a different phase of life with varying circumstances. The only constants were they were after surgery and it was declared a miracle by multiple people.

Here’s the thing, it only looks like a miracle.

There hasn’t been a single time, during any of those, when I’ve gotten out of bed and suddenly been able to walk without some sort of difficulty during any of those time periods.

That would be a miracle. That hasn’t happened to me.

A lot had to happen in 1 year, 1 month & 1 day (for example) for those first independent steps possible.

The hours of PT.

The hours spent doing an at home PT and hoping you’re doing it right.

The hours waiting for and/or attending doctors’ appointments.

The early mornings.

The sleepless nights.

The pain.

The countless days spent trying to appeal insurance denials.

The hours at the gym because you’ve maxed out your insurance.

The co-pays and out of pocket costs.

The time out of work.

The time away from friends and family.

The prayers.

The hope that tomorrow will be better than today.

Calling someone or something they’re able to do a miracle discounts the hard work they’ve put forth to make this so-called “miracle” happen.

I’m not saying that miracles don’t happen. There wouldn’t be a need for The Congregation for the Causes of Saints, for one thing, if there weren’t indeed miracles. But sometimes we’re quick to “cry miracle” without realizing that it took a lot more than you can imagine to make that miracle happen.

So next time you witness a miracle, take a minute and consider what might be behind that miracle before you make your declaration public.

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.