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.

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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

Sarah Leaves

I used to have a fairly regimented holiday season, and then things changed.

Taking the advice of a former coworker, when things changed that I couldn’t control I changed what I could control.

I leave.

As my mother keeps telling people “around the holidays Sarah leaves”.

As in claw around the holidays throw my stuff in a suitcase and hit the road, or sky, whatever fits.

In fact, I happen to be typing this while sitting in the back of an RV which sounds far more romantic than it actually is. Being a nomad, even temporally, isn’t for wimps.

Why do I hit the road? Because left to my own devices the holidays are filled with memories of traditions that lasted for decades.  I get out of my long time comfort zone of traditions by not acknowledging any, if I can help it.

Where do I go? Well that depends, it helps that my family has spread out in the last few years. It’s not nearly as expensive and much more relaxed.

If I can get a reasonably priced ticket and a place to crash I’m gone.

This new tradition of non-tradition helps in some ways but other aspects are more difficult.

There’s always lack of sleep to contend with but at the same time it allows me a better chance to think about other things rather than what’s still lodged in my brain. For example, it’s hard to get lost in grief when you’re trying to catch your next flight located across the terminal that’s scheduled to leave in less than an hour.

I don’t travel as much as I used to and truth be told I find it to be increasingly stressful but I do make these “pilgrimages” every year I’m able to.

I still get criticism from people for it but I don’t care.

My sanity must come first when I feel depleted or else I just spin within myself and it just gets ugly.

I don’t really leave. I retreat and recharge by changing my surroundings. I get out of my own head and in some cases out of my own way.

There’s nothing wrong with wanting to take a break of some kind, before, after, or even during, the holidays. It’s overwhelming and overstimulating for a lot of people, self-included, naturally. However, it’s much more common to criticize those who acknowledge that they need a break. Someday it’ll be the other way around, as it should be.

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.

Wheels Of Their Own

Many of us moms with younger kids struggle with the idea of getting a wheelchair for our kids. What would you say to us moms about what a wheelchair is and is not?”
-from Ellen

 The wheelchair choice is as individual as your child is.

Getting a wheelchair is a lot easier to do now than it was years ago so I’m always tempted to say go for it. I got my first wheelchair at 21, up until then I’d had hand-me-downs from other people, which fit horribly. If you think it will be helpful for your child consider it, do your research, it can be a long process, which you can always stop if you change your mind.

The most important thing to remember is that getting a wheelchair is for the sake of your child. Your child’s needs need to come first and foremost. I’ve noticed though talking with parents, reading blogs & doing some research that emotions cloud judgment. How will the child look to the outside world? It’s not about everyone else & what they’d think. It’s not even about the parents or siblings and what they think. It’s about the child who may (or may not) need a wheelchair.

What a wheelchair is is a chance for your child to bloom socially. It sounds counterintuitive doesn’t it? But in many ways it is, both ways.

If you’re too tired from trying to keep up with your friends how are you supposed to enjoy yourself? If you know you won’t be able to keep up with your friends you may say to yourself “why bother” and stay behind.

Yes your child will be seen as being different, because they are different. A wheelchair won’t make that fact better or worse.

Emotionally a wheelchair will probably mean more to parents than it will the child. The only advice I can give is to put your child first & keep your emotions out of the decision, as much as possible.

A wheelchair will not take away or change your child’s identity. Sitting down or standing up, your child is still your child.

Believe it or not but using a wheelchair has become more socially acceptable than it was years ago. We can probably thank new laws for this, but I can’t be too sure. The world is much better suited for the able-bodied & wheelchair users; those who use walkers & crutches often have to fend for themselves more often, from all sides.

The stares you’re worried about your child getting in a wheelchair are much worse with other assistive devices (from my experience). Not to mention the likelihood of being tripped or tripping someone else with crutches. Sometimes it is just easier to use a chair.

 “Often there is a thought that if there is a wheelchair the child will never walk independently, or if it is only used for long distances, then why not get a nice stroller.”

 If your child is not a baby they don’t belong in a stroller, no matter how nice it is. End of story. Before I started acquiring hand me down chairs my mom had purchased (out of pocket) what I can only call an oversized stroller. It served its purpose well, but only because insurance would not approve getting a wheelchair. The insurance company felt the same way I’m sure some parents feel, “she can walk, she doesn’t need a wheelchair.”

What the insurance company failed to realize, as do other people, is that I had far outgrown a stroller. I may have been able to fit in one comfortably but socially & mentally it just didn’t work.

It did help me get from point A to point B more easily, but only if someone was willing to push me there. The independent discovery that comes only from the self-propulsion of a wheelchair does not & cannot happen any other way.

As for the never being able to walk independently, well that’s a load of BS. The truth is most wheelchair users can in fact walk, yet they use a wheelchair for various reasons. So the idea that wheelchair usage means a person cannot walk is incredibly incorrect.

Using myself as an example, a wheelchair user, I have done the following; hiked Mt. Rainier, enjoyed some of the largest tri city fairs on foot, frequently climb multiple flights of stairs on a daily basis. When I use my wheelchair it’s due to various reasons, but almost always purely situational.

Using a wheelchair does not mean your child won’t walk. It’s not some white flag to independent ambulation.

What a wheelchair is not is a reflection on who your child is or who you are as a parent.

What a wheelchair is is furthering your child’s independence & helping your child discover who they are meant to be.

*A similar version of this post first appeared on an old blog on March 27, 2012

Cupcakes, Old Podcasts & Touching Reliquaries

I’ve picked up an awful new addiction during this semester, listening to podcasts, well the listening to podcasts part goes back to after my 1st CNMC but I’ve acquired the habit of listening to podcasts that I no longer in production.

I’ve listened to every episode of The SaintCast & In Between Sundays, some more than once.

I’ve listened to so many podcasts in the last few months that the audio jack, where I plug in a headset, on my computer has ceased to function.

Anyway….

I heard that the body of St. Maria Goretti would be touring the U.S. & wondered if there would be a stop close to me, I wasn’t holding my breath but I knew I’d probably wish I had made the effort if there was the slimmest chance.

If I’ve totally lost you go listen to SaintCast episode 15 and come back later.

I emailed my cousin to see if he’d be interested in going with me.

“How can we NOT go?”

He was right; it was so close, relatively speaking, that we couldn’t not go. I’m not the biggest fan of dead bodies, but how many chances does a person get to see a real saint?

I made the decision to take my wheelchair because I didn’t want to think about standing in a long line (even though I knew full well I’d be playing right into the misconception that people with disabilities have a greater need for prayer and feel more akin to the Communion of Saints). Plus my cousin has 6 kids and I wanted to give him some “off time” from having to keep tabs on another person.

It ended up not being as busy as I thought it would be, but then again we were going in the middle of the week, and in the middle of the day.

We found a parking spot quickly and headed inside, through the handicapped entrance so I joked that we’d probably get to skip the line because we were using a different entrance than most people.

It’s a running joke in the family that going out with me means that occasionally you get surprise privileges, easier parking, and better seating at sporting events, no lines at Disney; although not everyone has had the joy of experiencing it firsthand.

I’m happy (and somewhat sad) to say this was one of those times.

We went in and surveyed the situation. I thought about going to the back of the line but I noticed a priest assisting people off to the side of the main line, and closer to the door.

“Let’s just go up to him. We can probably jump the line” Yes, I do realize how awful that makes me.

We were told to wait until the person in front of us was finished and then we’d be escorted to the reliquary.

I thought an escort was a little much since I wasn’t going to be getting out of my chair. But there are plenty of other times when I wished I had such a privilege so I took it.

We were taken to the front, and I made space for my cousin to be next to me. On the other side of me I hear, “Would you like to touch the reliquary?”

It then occurs to me that this is the closest I’ve ever been to a dead body EVER, so I guess it’s a good thing that the first time was for a saint, there was no way I was going to touch it. I’ve touched one casket in my entire life and that was good enough for me. I might’ve felt differently if there had been some prompting by the Holy Spirit but I think it/he/she knew this was a big day for several reasons & I can only take so many breakthroughs in one day before breaking down.

“Nope. I’m good thanks.”

Yeah, I told a priest “Nope,” cause I’m full of politeness and class and all that.

After spending some time in front of the reliquary we parked ourselves in a nearby pew for some prayer, and if you’re me, people-watching-after-prayer.

I had been to this particular parish before, but I couldn’t remember when, or why. My cousin says we’ve both been there before, and together, so my guess is I was pretty young and passed to a bigger cousin or two.

After some prayer time we discussed whether we wanted to stay longer or leave. The conversation went something like this:

“Do you want to stay longer or are you finished?”

“Whatever you want to do, but if we go now we can get a cupcake.”

“Let’s go get cupcakes.”

There’s a reason why Catholics are referred to as practicing Catholics and not perfect Catholics, and even if that was a thing we’d both fail pretty miserably. And it’s pretty obvious that even though we’re technically both adults, we’re actually overgrown children.

I should also be noted that this is one of only a handful of times that my cousin and I have had one on one time. We both agreed that we had the best time and we should do stuff like this again (Are there any more saints touring the US anytime soon?).

When Normal Is Nice

If you asked me 6 months ago if I thought I’d want to be in a celebratory mood when December came around I would’ve had some kind of major emotional response, and it wouldn’t have been pretty.

The last year, particularly the last 6 months have been almost unreal. Aside from my (un)usual course load and near insane travel plans there has been a lot of navigating uncharted territory, and little of it was pleasant, or good.

I tried burying myself in work and school but it didn’t always work. There were sleepless nights, lots of questions, and even more tears.

One of the more notable things being sitting next to someone’s hospital bed rather than being the one in the hospital bed, normal people would consider that a good thing but coming from the point of view of a professional patient it was uncomfortable.

I was in uncharted territory.

I’m much more comfortable being the one in the bed than next to the bed. I think family, friends, and medical professionals would prefer it that way too. I’m pretty much a pain in the ass when I’m the patient but I’m insufferable when I’m the “family support” (and the fact that I can recognize that should tell you something).

I’ve had those uncomfortable conversations that people like to avoid, all over again, because if I’m ever back to being the one in the hospital bed. I want everyone within a 20 mile radius of my room to know what my wishes are, right down to how I’d like to be dressed, in the event I cannot speak for myself.

Then things changed, again.

What started as relief turned into a whole other series of questions, in the end I had to recognize that this was “the new normal” that people talk about so often; another uncharted territory that required exploring, and then accepting.

I thought I knew where I stood on a multitude of issues, but I was forced to reexamine my motives and change my position on more than a few things.

For example, I never understood how people could say that a loved one was “still there” after suffering a stroke or being diagnosed with dementia. Now, I’ve read My Stroke of Insight and many other books on neuroscience. Intellectually I understand that someone isn’t completely gone but I couldn’t grasp it on any other level, until I encountered it up close and personal.

And it’s amazing to witness (although, admittedly, not always easy).

Like so many others I’ve focused on the quality of my life over the quantity of my life (and then proceeded to project my thoughts onto others silently as well as out loud). It’s not so black and white. There’s a whole lot of grey in the in between that needs to be acknowledged, questioned, processed, and then accepted.

Allowing yourself to able to live in a normal, even if it is a “new normal” is nice, if you let it.

Comfort Foods

I should be really good at this one since I’m forced to watch the food channels at PT as everyone “pre-game” for dinner, even if it does drive me nuts.

Also, I don’t cook, probably for a few reasons, but one of the biggest is CP. It’s hard to balance and cook and I’ve had to catch myself very close to stoves and ovens so I just try and avoid them.

Plus I hate cooking, as anyone I’ve ever lived with. I do much better with assistance from someone else. I do even better when I’m someone else’s assistant.

I will tell you though many of my favorite memories involve food. I’m not fan of eating at parties (like holiday parties) because I feel like I’m being judged for everything I do or don’t put in my mouth by people I may or may not know. Anytime that happens it involved “uncomfortable foods” no matter how much I may like the food being served.

However I do enjoy meals with people, especially people I enjoy spending time with people I love over a meal. I love going to my great aunt’s house for Sunday (or Saturday) dinner especially.

The act of cooking brings me nothing but stress and aggravation.

It’s a 50/50 split when it comes to the actual eating, but that’s dependent on situation.

I like food the most because it’s a way to bring people together, whether you’re eating it or not. It’s also the best way to find out information about people without seeming nosey 🙂

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