Lifeguards Do More Than Save Lives

I always found it odd when people said I was “more than up for the challenge” while I was growing up, especially when I really wasn’t given a choice in the matter. However, those types of voices get fewer as you get older, and I’ve discovered that I really do like a challenge.

One day while leaving the pool I noticed that there would be a swim challenge. After looking at the flyer, and checking my unreasonable expectations at the curb, I signed up.

I’m not the biggest fan of lifeguards, especially ones I see all the time and they act like they can’t be bothered by anything. So, my least favorite part of the swim challenge was that a lifeguard had the sign off on the number of laps I swam each day.

There were a few problems with this:

  1. No one other than the swimmer was counting the laps.
  2. Most of the lifeguards were clueless about this challenge so asking them to sign off came as a surprise.
  3. Keeping the record sheet dry was difficult, to say the least.

I had a feeling from the beginning that I wouldn’t reach the end point of the virtual swim but I still held out hope that I just might make it anyway. At some point, I realized there were few days left and I wasn’t even going to make it to the half way mark. I was really thinking I would make it at least that far.

Feeling defeated I thought about taking my foot off the gas and taking a few intentional rest days, but I also wanted to see just how far I would get by the end date. On one of the last days I got out of the pool and approached the lifeguard after writing in my laps.

Swim Challenge 16 Close Up

I didn’t reach my goal but that lifeguard refueled me, which people need once and a while.  It took some of the sting out of not reaching my goal and encouraged me to try if the opportunity ever comes around again.

Lifeguards are on deck in case a life (or more) needs to be saved but sometimes they don’t just do that, and that’s just as important.

BADD ’17: In Defense Of The Able-Bodied

I’ve wanted to write this post for a long time, but it’s one of those “tread lightly” things, and that’s not my best skill, so I’ve put it off, but I think today is the day.

I’ve written before on whether or not it’s possible for those with disabilities to be ableist towards others with disabilities. While it’s a divisive topic I think it’s an important one to acknowledge and discuss in certain situations.

As excited as I was to join a swim team I knew I wanted to continue when the season was over, which ended up not being in the cards for a few reasons. I also knew the season was really just a start and I needed to find the next step.

I asked people for advice, people who have been around and faced some of the same challenges, but I didn’t exactly go how I thought.

Before I even made a viable connection, people tried to talk me out of what I had in mind.

It didn’t make sense to me, if the end goal was to create a more inclusive environment what was so bad about my plan?

I showed up to my 1st masters swim practice with extreme caution. I wasn’t sure it was going to work, especially after watching the junior team practice, but I needed to give it a try. I had 1 private session with a coach a few months before and I was still reaping the benefits. If I backed out of a chance at team practices I would regret it.

It was a hard practice but everyone seemed welcoming. I’ve kept a list of goals since I started swimming again. I had been steadily chipped away at them but things stalled, until this practice. I ended up crossing off almost everything else on the list.

Then nearly everyone who encouraged me to seek out other opportunities tried to talk me out of it, even when I didn’t ask for their opinion.

It wasn’t good for me to leave people “who are like me” or “could understand someone like me,” at least according to them.

I understand their concern, at least usually, but what confused me was these comments were coming from people actively working towards more inclusive sports. So, why shouldn’t I join an able-bodied team? Especially if it’s a better fit, in almost every way.

I know there are those out there who feel that I’m betraying “my people” but if the ultimate goal is for people with disabilities to be seen as equals to the able-bodied community so we need to become part of the able-bodied community whenever an ideal situation presents itself.

At least that’s what I think.

I’m not going to say that the change has been seamless. It’s been full of adjustments, not so great practices, and at times downright culture shock.

But I can say without a doubt that I wouldn’t be where I am today if I hadn’t made the change.

And that’s made me think a lot more about inclusion.

When we see a chance for inclusion we should take it, we need to take it. It doesn’t always come with the betrayal of the disability community, and if we keep seeing it that way then we probably should change our approach.

Inclusion isn’t a one-sided issue, we can’t just stand around and wait for people to include us. We can’t just yell, and bitch, and moan about it either, there has to be some meaningful effort on our part, and it doesn’t have to be some grand gesture either.

Sometimes “just” showing up and seeing what could happen is enough.

Blogging Against Disablism Day, May 1st 2017

A “Fit” ting Realization

I’ve made a few changes in my fitness routine. I won’t go into the details because I don’t know how much of the new will “stick” and how much of the “old” return, or if at all. It’s also more complicated than just feeling the need to change things up; although that was part of it.

In the midst of all of the change and transition I’ve realized something about myself.

I would make the worst workout partner on earth, possibly the universe.

Exhibit A: I’m on an elliptical next to someone else on an elliptical. I’m barely able to keep the machine going under my own power. That someone else inches from me is going close to 100 rpms (or whatever) while texting full conversations and listening to an iPod, like it’s no big deal.

I realize we look like an exercise infomercial, and he has no clue what he’s doing (and how his actions may be effecting the self-image of others.

I resist the urge to push him off the elliptical, mostly due to my personal safety (balance) than any other repercussions.

Exhibit B: I’ve just finished up a few minutes on the recumbent bike. A feat that would have been laughable not that long ago but now I can keep a steady (albeit painfully slow). The seat also has to be “just right,” pretty much the ultimate short people setting but not quite. I hear a lady behind me say she hates the bike (can’t say I blame her) because she’s too short (she’s actually a little taller than me). I think, she’s going to be pretty surprised when she realizes she’s going to have better luck today.

I watch her out of the corner of my eye and she peddles twice (or maybe it was four times) and quits.

I resist the urge to give her a five minute lecture on how it took me years to do what she just did and she gives in, because she probably surrounds herself with people who allow her to throw in the towel far too soon.

Exhibit C: I get to the pool 5 minutes “late” (5 minutes after opening) so all the official lap lanes are taken. I “trudge” down the pool ramp wishing it was deep enough that I could roll my wheelchair to the edge of the pool and “jump” in.

The lady in the lane next to me is doing “the old lady dog paddle.” She shouts to my mother (who has to bring me to the pool because of a lack of automatic door openers) that she forgot to close the door (the door closed by the time she got back to it). She does 2 more laps before getting out of the pool. She uses the ladder (which happens to be in my lane), she almost kicks me in the head in the process.

I stop myself from wanting to shout at her about noticing an opening a barely open door yards away but she can’t manage to keep her heals within striking distance of my eye.

Exhibit D: I’m using the upper-arm bike trying to keep a pace in the 50s rpm range. I realize I’m actually keeping steady in the mid-60s without much difficulty. Someone is using the upper-arm bike next to me.

It doesn’t take me long to realize I’m trying to out due them, without knowing how far they’re going or who they are. But I did get to 70 rpms.

Exhibit E: Lest we forget why I spend the extra money (which I don’t really have), because I’m not the best person to be left to their own devices. For all intents and purposes I need a “babysitter,” because if you tell me to do 3 sets of 10 of anything and walk away I’ll just make it look like I’ve done 3 sets of 10 & then lie to you about it.

But at least I’m honest about my dishonesty, within reason.

Exhibit F: Even when I win (a board game, cards, anything) I don’t consider it a real win unless it’s by a fairly large margin.

My name is Sarah, and I think I have a problem.

*A similar version of this post was written on October 15, 2014

 

CP See, CP Do

“Breaststroke, drill, 6 count glide.”

My coach says at some point during practice, somewhere between warm up and the time when I wish I was in bed sleeping.

I love breaststroke, even though my stroke is 100% pull and 0% kick, so just hearing the word “Breaststroke” makes me happy (or slightly less unhappy depending on the previous set).

But hearing the words, “Breaststroke, drill, 6 count glide,” at this point makes me roll my eyes (thank goodness for darkened goggle lenses).

Although it’s my favorite stroke the drills are killer.

Why?

I have no back end to speak of, literally I’m working with half of what everyone else has at their disposal, especially in Breaststroke. I’m well aware of this, at this point almost everyone else is too, but that doesn’t get me out of doing drill work, and on the rare occasion it does I’ve at least tried the drill.

But this time is different. I know I’ve done this drill, my brain just can’t pull it up. So, I turn to my teammate, “It’s pull, 1-2-3-4-5-6, pull, 1-2-3-4-5-6, pull. Right?”

She puts her arms in front of her and does the drill using every verbal cue to match the visual cues. My teammates (and coach) also know I do better with visual cues and having verbal cues doesn’t hurt.

I stay behind as everyone else heads to the other side of the pool. I’m sure I know what I’m doing but I want to be really sure. I scan across the lanes and pick someone to watch.

“The goal isn’t to go fast. Make it clean,” my coach says standing behind me. This isn’t new either. Although I took up swimming a few years ago, drills are still new. My brain is used to stop or go, not maximize what you have to use less energy. She’s now used to giving me a single focus, spelling it out before I completely tire myself out trying to do what I think I’m supposed to be doing.

“Don’t go fast. Make it clean,” I say outload and scan across the lanes one more time before I push off.

Pull.

1-2-3-4-5-6.

Pull.

1-2-3-4-5-6.

Pull.

I’m saying everything in my head while I’m doing it. Keeping my neck long and straight with my head down all while my arms wobble erratically in an effort to keep my body balanced. My chest is starting to burn and I can feel my heart beating lightly in my ears. This doesn’t feel like what I see anyone else doing.

I forgot to breathe. When am I supposed to breathe? Oh, yeah. 5-6.

Pull, breathe.

1-2-3-4-5-6.

Pull, breathe.

It’s better but still awkward. Eventually, pretty much an eternity, later, I touch the wall.

“That was a really nice Butterfly pull at the beginning of that last one,” my teammate says with a smile on her face. She knows I messed up & I didn’t realize it. I didn’t do a Breaststroke pull until my 2nd pull.

I’m mad, but at myself. I can’t even do things I like right, never mind well.

I remind myself why I’m here & why I’ve stayed with this group. A few months ago, I would’ve finished out practice and kicked myself until the next day, at least, over it. Now I know no one really cares how I do the fact that I try to do it is enough.

I’m lucky that I’m with a group of people who care about how I do but help me keep my personal expectations in check. I want to do things perfectly the 1st time every time. No one can do that. When someone laughs, they aren’t always laughing at me, they’re trying to get me to laugh at myself, because they’ve been where I am.

I’ve even luckier that I have a group of people I can watch. I can see it before I do it rather than just thinking I know what I’m supposed to do. I have a good idea of who to watch depending on the stroke, distance, and/or drill, and it really does help.

I sometimes joke that my team is a motor planning think-tank because sometimes it’s how I can get the most out of practice.

  • See it.
  • Plan it.
  • Do it.
  • Make needed changes.

Life Without An Off Switch

There are a lot of analogies that can apply to what it’s like to live with Cerebral Palsy.

For a long time my muscles were like a phone dialing the wrong number.

Then I started telling people I was still working with dial up while they had Wi-Fi (thanks to John W. Quinn for that inspiration).

More recently I’ve referred to my muscles, or more accurately my nervous system, as not having an off switch.

All of these analogies can apply to my experience, and I tend to use them interchangeably. However, there are probably a few more that would apply too.

The only time all of my muscles are ever fully relaxed is during surgery, and possibly when I’m asleep but that’s a stretch.

There’s a sense of pride that comes along with being able to say that you’re “firing on all cylinders,” but there’s a downside to it that doesn’t get talked about as much as it should.

Always being “on” means it’s hard to get adequate rest, making you prone to injury (even weird ones) and making it harder to recover from injury.

There’s also the matter of fuel aka food.

If you use more energy you use more fuel to get that energy.

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I often joke with my teammates that although I don’t always swim the same distance they do I’m actually working at least twice as hard as they do, except I’m not always joking.

Asking my body to sprint is like asking a car to go from 0 to 60 with the parking brake on. I start off OK but I’m quickly left in the dust. Honestly if I can see the feet of someone in front of me than that’s a success, at least for me.

Is it frustrating? Sure. But I’ve made such a dramatic change in my training that I wouldn’t have even considered swimming with these people a year ago.

I’ve made so many changes in my life in the last year that being able to be within striking distance of someone else’s feet is really an accomplishment, if you’re looking at the bigger picture here.

Living without an “off switch” can be a challenge and it always seems to be a learning process but being able to put it in a context, for me that means within swimming, helps solidify it more than I ever thought possible.

Things That Make You Say Ow

A few weeks ago, I woke up & I knew something was wrong. I laid still for a few seconds trying to gather up the courage to admit the truth.

My neck hurt.

I hurt my neck, to put it more accurately.

I could turn it slightly, but not without pain, so much pain I wondered if I’d throw up.

I thought back to the week before: what had I done?

Nothing came to mind.

I was hoping it would go away as quickly as it showed up.

I wasn’t that lucky, when I discovered the potential culprit of my injury I felt downright ridiculous.

I hurt myself by sitting in a chair.

No, I did not fall out of it, just the simple act of sitting in a chair caused this annoyance.

People think that ergonomic chairs are good for everyone, well that’s not exactly true.

Ergonomic chairs, just like normal chairs, are built for normal bodies.

A person who is 4’11” and has CP isn’t normal.

Therefore, my spine turned into a pretzel, more than usual, and my neck took the most punishment.

The first thing that came to mind was, How quick can I get this fixed, I have practice.

(Further proof that I have made the shift to athlete)

I hate missing practice, because even when it’s not fun something about it is fun & I need more opportunities to practice than people who don’t have CP.

Having an injury is also difficult when you have CP.

Because your muscles don’t necessarily have an “off switch” it’s harder to heal, much like getting a cold, the recovery time just takes longer.

And it sucks.

It’s also a delicate balance between giving yourself time to heal but not staying so still that spasticity begins to run amuck, making any injury harder to heal from as well.

It’s an easy cycle to get into but hard to get out of once you’re in it.

One of the most “fun” parts of being an athlete with Cerebral Palsy.

There you go, it’s possible to hurt yourself in any way possible when you have CP.

Then to add insult to injury, pun somewhat intended, it’s harder to recover from it.

Athleticism + CP = ?

Personal note: The timing of this post and the events in my personal life are in the realm of “God laughs at me, all of the time.”

Growing up people always seemed interested in whether or not I had athletic aspirations, conversations which never seemed to go how you would expect. I was always picked last in gym class and never could try out for a team. I was somewhat relieved when I went to a high school that didn’t offer team sports, then my answer could be “my school doesn’t have sports” without further questions. But that didn’t mean that I didn’t have athletic aspirations.

I didn’t think I’d ever become an athlete but now I can’t help but call myself one, if asked. Although I do get more quizzical looks now than I probably would have way back when people would ask about my interest in sports.

People think I swim as part of rehabilitation, that’s how it started but that’s not what it is now. Are their rehabilitative aspects of it, sure, but that’s not the primary goal these days.

I’ve made the mental shift from recreation and rehabilitation to athletic pursuits and then the physical shift followed.

As I spent more time in the pool I realized I needed to spend more time in the gym. The more time I spent at the gym has meant, among other things, that I’ve needed to spend less time picking myself up off the floor after a fall.

The more time I spend at the pool and in the gym the more I ate, and the more attention I paid to what I ate. I can’t just eat whatever I want and expect it to sustain me through a 2 hour swim, just one 25 yard sprint makes that point really fast.

Never mind the fact that people with CP burn calories at a faster rate than able bodied individuals, and that certain foods seem to have adverse effects on muscles prone to spasticity.

If I don’t have the fuel I can’t workout. If I don’t have the right fuel I can’t get the most out of my workouts.

Not everyone can be an athlete, but having a disability doesn’t automatically exclude you from becoming one.

People with CP can be athletes. I know, because I am one.

The Week In Review

The last few weeks have been rough for me on nearly all fronts. I won’t go into the details because recounting all of it would just be too exhausting. Let’s just say I could relate a whole lot to a recent recording of Adventures in Imperfect Living.

I either haven’t been able to get anything done or I haven’t wanted to. What I have could get done is my part and now I’m waiting on someone else. I’ve been in a hole and by the time I realized it I was already buried to my shoulders.

The one thing I could count on to attempt to get out of this funk has been swimming.

Are you surprised at all?

Although I must confess my enthusiasm for the sport has waned in the past few months, which should give you a clue as to how buried within myself I was.

I began to make a few small changes.

Things I could control, without question.

I got into the pool and followed that black line up and down, and back again.

I took what I could control one step further and tried what I wanted to do, what I thought I could do.

It’s been fun, even if it hasn’t always worked.

I admit that staring at a black line for extended periods of time sounds boring but I’ve found empowerment in it. I always have. These past few weeks have just proven that for me.

I don’t have to think about what I must do. Often I can’t. I’m occupied with my stroke count or looking at the line at the bottom of the pool.

Or I’m not think at all.

It’s easy to get lost in your own rhythm, literally.

It’s as simple or as complicated as you make it.

Just as people wish life would be.

Digging yourself out of a hole doesn’t make for a good week, at least for me it doesn’t, but having something to look forward to makes the days a little easier to work through.

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.

Becoming A Road Map

Since swimming reentered my life I can’t get enough of it, so much so that I spend far more time thinking about swimming than anything else. The first thing I plan to pack on any trip is a drag suit & pull buoy, just in case there’s a pool nearby.

A visit to my aunt’s place in the dead of winter was no exception, except winter in Florida is like summer in New England. Plus, she lives within walking distance of multiple pools, and we’re not expected to clean a single one, ever. So being asked, “Would you like to go to the pool?” has me in a suit and out the door as fast as my coordination allows.

I learned to swim in her backyard pool (& almost drowned a few times) as a kid so she’s used to my unorthodox methods of navigating in and around a pool. Rarely does she ask if I need help, in fact she rarely says anything, probably knowing how much joy I get from the water.

“You look like a roadmap.”

It’s hard to hide anything physical in a swimsuit. So you can see each and every one of my surgical scars.

The nearly 30-year-old SDR incision is well healed, but still one of my most noticeable scars. The bilateral scars on both sides of my legs from the tendon transfers, that at one point during my Catholic school days, doubled as dress code marker since skirts could be no more than 2 inches above the knee. Then there are the most recent scars that run along my outer thighs that look similar yet distinctly different from each other, proof that a surgeon does have a trademark style of closing an incision. Everything down to the scar tissue that marks where surgical probes were inserted during who-knows-which surgery that gave surgeons information they needed.

It’s not unusual for me to try and hide at least a few of my scars, especially for formal occasions. I want (and would rather) people look at me because I look good, not because they’re wondering why I have 2-foot-long scar along my spine.

I don’t care about any of that, 99.9% of the time, particularly when I’m in a swim suit. My concern is following that black lane on the bottom of the pool, as many times as I can, as fast as I can.

I care more about executing turns and streamlined body positioning than if anyone is wondering about any (or all of) of my scars.

I do look like a roadmap. A roadmap that only tells portions of roads I’ve traveled. In reality they’re just visuals left up to interpretation. I’m sure people see me around the pool and feel pity, or sadness, or courage, or a sense of inspiration. I have no idea. Honestly I think I’d rather not know what people think of me.

I know what I need to know, that without these scars that have made me look like a human roadmap I wouldn’t be doing what I’m doing. I wouldn’t have returned to the pool or found a sense of freedom I’ve missed out on in the not so distant past.

I’ve been asked why I would want to “destroy” parts of myself when I’m perfectly healthy. It’s a legitimate question but the same people who ask such questions don’t know the need for the so called “destruction”.

Each scar was created with the hope of a better future, and in the process I’ve been created to be a map with no known final destination.

It’s like the movies where the main character is given half of a treasure map and needs to find the other half before the story can be completed.

Sitting On Saints

Catholics have an interesting relationship with saints, we ask for their intersession, visit shrines, we may even stand in line to view their relics (which sometimes includes their actual body).

I admit that I don’t fully understand the significance myself. However, I also need to admit that I have also taken an already misunderstood relationship with saints to a new level.

I sit on them.

(Yeah, you might want to read that again and let it sink in.)

It wasn’t something I was planning on doing, but it just kind of worked out that way.

I made an offhanded comment about whether or not St. Joseph of Cupertino would intercede on behalf of the safety of my wheelchair during flight. Because every wheelchair user has at least one airline horror story that’s wheelchair related. He is the patron saint of air travelers, and I have admitted that I often refer to my chair as a person, so I didn’t think such a question was that far out in left field.

 

And before we go any further, my chair does not share a name with a saint, at least not from what I can gather. Besides, that would be a little too strange.

I had this idea to get a patron saint medal and somehow attach it to my chair. But it just didn’t work out. I might’ve had better luck if I was within walking distance of somewhere that has every patron saint medal under the sun, but that was so long ago now.

It the flurry of preparations for my swim meet the thought resurfaced, although I had no idea if there was indeed a patron saint for swimmers. I knew of St. Sebastian, patron saint of athletes, but I wanted to find something a little closer, if at all possible. Because I really could use all the help I could get, even if I doubted it would make a difference.

There seems to be a saint for nearly everything, until you get specific.

It turns out there is a patron saint of swimmers/swimming, Saint Adjutor of Vernon, who, escaped, apparently swimming to freedom.”

Considering my history with swimming and my goal of not drowning during a race it seemed like a good fit.

I embarked on my original mission, with a different saint, get a patron saint medal and somehow attach it to my chair. However, finding anything on obscure saints is a challenge, and if it isn’t, it costs more money than you want to spend given one’s individual needs.

I got the idea of putting something inside my seat instead. Wheelchair seating typically comes in layers so it wouldn’t be completely out of the realm of possibility to slide something under the cover and leave it there. But if the top layer gets wet it tends to seep all the way through, requiring a complete dismantle of the entire cushion, which is if nothing else, annoying.

I found a workable solution however.

Yup, pictures of saints in plastic baggies.

I slide them into my seat cushion and no one knows any difference (well now you do, because I said something).

There you have it, I sit on various saints, albeit in the spirit of intersession & reverence.