An Ode To Sweet Caroline

Almost a year ago I (finally) met my new comrade, named Caroline.

Caroline

Yes, my wheelchair has a name.

You honestly didn’t think I’d let a CP Awareness month go by without a post about wheelchairs, did you?

I came across a vlog recently that sums up some of how I feel about wheelchairs, and the choice to use them.

I don’t know why people have such strong feelings, that they feel need sharing, about something that should be a personal decision. For me, a wheelchair isn’t a hindrance. Instead its independence.  Part of the reason why I gave my chair a name is to make it (or should I say her?) more approachable. A wheelchair isn’t a symbol of loss, it’s a symbol of modification.

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

They Forgot Me On A Train

I do not enjoy train travel and my most recent experience didn’t help matters, which is probably a dead giveaway given the title of this post.

I travel to NYC once a year. People think because I’m so close I do it all the time. 1) It’s not that close and 2) the logistics involved are beyond ridiculous.

I know a lot of wheelchair users who prefer to travel by train, but I’m not one of them.

A few years ago, it was announced that all railcars would soon be fully accessible, meaning no need for bridge plates and worrying about finding a car with a wheelchair space.

Years later not all railcars in use are accessible, and even the accessible cars require the need for bridge plates, which means you need a conductor to get the bridge plate for you.

And therein lies the problem.

I knew I would probably need the bridge plate once getting to my arrival station so I parked myself next to it and informed the conductor. Once the train stopped at my arrival station (also the last stop of the night) I let everyone else disembark ahead of me and waited for the conductor, especially after I saw the size of the gap between the train and the platform I knew I shouldn’t even try to hop over it.

I’m waiting a long time so I see if the bridge plate was left unlocked. It’s happened before, but not this time.

My mother decided to stand in the doorway to prevent it from closing and hopefully flag down a conductor who might be passing by, no luck.

The starts closing and unlike elevator doors they don’t stop when met with resistance.

My mother is standing on the platform and I’m still on the train with no way to open the door.

I don’t see anyone who is still on the train or a phone number, instead I just see an emergency intercom.

My mother is trying to find someone without wondering too far from the train.

I press the button on the intercom & start screaming for help. It’s late, pitch dark, and I have no idea if or when they’ll turn the lights off on the train.

Nothing.

I press the button again & scream.

Nothing.

Again.

Nothing.

At this point I’m panicked and just want the door to open.

I try the intercom again.

Still nothing.

Finally, a conductor walks through the car, doing the final walkthrough, my screams weren’t heard.

He tells me that he told the other conductor, the one my mother saw walk off the train but she couldn’t get his attention, that I would need assistance. He asks if I still need the bridge plate.

(I want to scream again, but this time for an additional reason)

He opens the door, puts the bridge plate over the gap, and wishes me a good night.

My panic has been replaced by fury but because it’s so late at night all offices are closed and I’m forced to just go home.

I go over the whole thing in my head and then again, on the ride home.

There was nothing I could’ve done differently, and that’s what I still find to be the most frustrating.

The world isn’t always a friendly place for people like me.

That’s just not acceptable.

Not to mention worse than being forgotten on a plane.

They Forgot Me On a Plane

Feel free to watch before you continue reading.

My experiences traveling are different than Mike’s although there are enough similarities to relate.

Here’s the thing about traveling with a disability (from my experience), no experience is ever the same; even with something as standard as TS@ procedures.

I have family settling in North Carolina (with Florida being a close 2nd) faster than should probably be allowed. I need to figure out streamlining my air travel to anywhere in North Carolina or else my wallet would continue to be emptied in BWI out of sheer boredom.

There’s also the matter of traveling from point A (my home) to point B (North Carolina) could take anywhere from a 2 hour flight to an 8 hour day (if more than 1 flight & layovers are involved).

I got lucky when I remembered that Charlotte is a hub for a major airline (you can probably guess the airline that shall remain nameless).

At least I thought I was lucky (see: title of this post).

I did everything possible to prepare airline staff of my needs. I told them what I needed & asked questions for further clarification. I got nervous when I boarded the aircraft; due to its size, but sitting by the window helped. I slept the entire flight thinking I was in the clear.

I like to sit towards the back of the aircraft for two reasons, it’s easier on my spine & the ground crew needs time to retrieve my wheelchair, sitting towards the back allows them to do this without agitating me.

As I approached the door of the aircraft to deplane I caught the eye of one of the flight attendants.

“Oh no. We forgot you were onboard. Will you need a ramp?”   

 You what? Will I what?

I look out the door to see a flight of airplane stairs & they’re steep.

I guess that’s what that ‘do not walk behind the wings of the aircraft’ warning was all about. And come to think about it no one asked about whether I’d need assistance upon arrival.

Now I know to bring it up before leaving the departure gate before boarding……

I was tempted to ask the flight attendant just how she thought they’d set up a ramp safely now that half the plane was empty and the other half were waiting, but I held my tongue. I told the person I was traveling with to go in front of me so I would have a better grasp on spatial awareness (by looking at her shoulders instead of the stairs).

I made it down the stairs & I looked for my wheelchair, which was placed (brakes on, to my surprise) in front of the wing, just barely.

While waiting for my luggage to be unloaded I snapped a picture of the plane to send to friends & family, with not so comical commentary, to let them know we had arrived safely. Not long, maybe 3 seconds, after I press send I start getting replies.

“How did you make it down the stairs?”

“Didn’t you tell someone you needed help?”

“What if you couldn’t walk?”

The last question was the one that really got to me. I’m fortunate that I have good enough mobility that I can make do when unexpected situations arise. As unpleasant as being a forgotten passenger was the situation could’ve been worse. I could’ve been stuck on the plane until they got the ramp, however that would’ve happened.

Getting into the terminal was another challenge. I was told, and I’ve also read, beforehand that the Charlotte airport was going though major renovations. I hope this is true, because if things stay as they were the accessibility is pretty terrible.

I hope that eventually, meaning sooner rather than later, that every flight can be given a jet-way that leads straight into the terminal so stairs and/or the need for additional ramps isn’t even a thought.

I’ll probably use the airline & the airport again. It wouldn’t be my first choice. If there is a next time, for whatever reason, I’ll be better prepared. I hope the airline will be as well.

When I’ve retold my experience to others they’re shocked that the flight crew forgot I was on board. It wasn’t the first time it’s happened & it probably won’t be the last. I do my best to express my needs and concerns to who needs to know, and maybe a few who don’t. That’s all I can do. But that doesn’t make it suck any less.

Do you have any interesting travel stories?

*A similar version of this post was written on May 20, 2013

Am I So Different Now?

One of the best things about relaunching a blog (and pulling down another one) is the ability to not only look back on previous material but also edit it if it feels right. The post I’m sharing is one of the 1st I wrote and kept (there are countless others that hopefully will never be found again). I was planning on editing it so it would make more sense for here and now. After reading it fully, I decided not to. This was one of the first (and at the time few) posts I wrote about disability.
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Last year I got my first wheelchair. It wasn’t my first first but it was the first one built specifically for me. I was so excited the day my rep brought it to my house I practically knocked him over at the door.

As excited as I was to have a wheelchair I could call mine I needed to learn how to use a piece of equipment that was meant for me. Not only did I need to learn how to use something that was meant for me. I needed to learn how to use it correctly, and in the manner, that it was meant to be used. All of this is more involved than you would think. My chair is smaller than any chair I’ve had before, even though I’m bigger. Aerodynamics is a great thing but it can also bite you in the butt.

To help my chair and I become more of a team I went back to P.T. for mobility training. After all, the main purpose of ordering a wheelchair for me was to increase mobility. I couldn’t very well accomplish that without knowing how to get around in a non-wheelchair accessible world in a wheelchair. I spent hours learning how to go up and down curbs (safely), how to propel myself up steep ramps, if you can think of it we probably at least discussed whether I should learn another skill set or not.

Another important thing I had to do was strength training. If you’ve seen a full picture of me, or know me in person, you can see that my upper body is more than twice as strong as my lower body so you wouldn’t think strength training would be something I’d have to be concerned with, as far as my upper body is in question. The truth is the muscles you need to get yourself up a curb are the very ones that are underdeveloped in my body. I don’t know about you, but I found it to be kind of funny.

Not only did I learn proper wheelchair mobility. I learned to hate a completely new set of gym equipment; the arm bike can bite me.

The extra P.T. sessions weren’t enough. It’s one thing to maneuver a P.T. curb. The real world provides extra challenges that P.T. can’t prepare you for (sorry to all the recent spinal cord injury people out there who might be reading this). So I had to enlist someone else to help me out, so I wouldn’t flip myself over into the street.

I’m getting to my actual point now, I promise.

I went on a “walk” with my mom down the street. We live in a quiet neighborhood, at least now it is, so worrying about running into someone I knew was going to be extremely rare. It’s mainly why I agreed to go on a walk in the first place, until that day I had just practiced around the rehab where things wouldn’t seem so out of place. Shallow, yes, but everyone has a shallow moment now and then, even if I had been waiting to have my own wheelchair for who knows how long. It’s an adjustment. I still have moments these days.

Not too long into our walk I see someone I think I know, but she ran right past us without a second glance, so I let it go. Not too much longer after that the same person comes back down the street, walking this time. I quickly decide not to say anything. My mom doesn’t either because she doesn’t remember who’s walking toward us, thank God because she has a knack for calling attention to situations when I’d rather just ignore everything going on, like most mothers.

Unfortunately, the person walking towards us realizes she knows me and by the end of our interaction I’m very angry and wishing either she or I were dead so the whole thing would never have a chance of happening again.

This person I ran into happens to be the mother of one of my best friends in grade school. My weekends were either spent at her house or her daughter, my friend, was at my dad’s house. Therefore, my mother does not know her well. They rarely crossed paths, almost never.

What shocked me about our short reconnect was that she talked to my mother rather than me. My mother. She doesn’t even know my mother’s name! Yet she talked exclusively to my mother and she doesn’t even know my mother’s name. So, that last statement isn’t exactly true.
She did talk to me. Like I was a toddler!

Just because I’m lower than your eye level doesn’t mean my IQ has gotten any lower. If you know me talk to ME, not the person I’m with because you think I’m somehow damaged and will interpret your clearly lacking social skills as acceptable.

She then goes on to tell me that her daughter, my former friend, graduated from a very prestigious school with a very high paying degree and how she’s living in New York doing paralegal work, not her field of study, because she’s “trying to find herself.” She then adds that my former friend is also living in one of the best areas of New York City in penthouse with a friend, for free, because this friend is so filthy rich her parents pay for everything. She never thought about asking me, or my mother for that matter, what I’d been up to. She never even asked the customary “How are you?” anywhere in the conversation.

This was when I finally got why my mom was, and still is, against playgroups. Or at least I finally understood her theory on playgroups and why she doesn’t like them. Who the hell wants to deal with all that bragging from people who think you’re less than they are?

Normally this wouldn’t bother me so much. I’m use to people treating me differently when I’m using a wheelchair and when I’m walking around. It’s become water off a duck to me. I just let it roll of my back. People are too ignorant to make the effort worth much. Although rolling over their foot is always an option.

What made this time different was that this was the same person that treated me like I was an adult when I was 9. Now that I’m 23, at the time of the event, she treats me like I’m 2. She knows I have a brain in my head and that I’m capable of expressing myself. She was even the one who pointed out to my father that I needed more structure and stimulation in my life because of my critical thinking skills. She also made sure my dad got me interested in activities higher than my grade level because I needed it to feel good about myself. But on this one day she forgot everything she ever told my dad, and me. She completely made me think twice about who I thought she was, and under minded my respect for her.

I still have a bug in my underwear about it, as you can probably tell.

I was so offended that I had to go home and be alone. If I had talked to anybody after this conversation I would’ve taken out my frustrations on someone who had nothing to do with why I was so mad and didn’t deserve to have to deal with my wrath because of it.

Is it society’s perception about people with disabilities that makes almost everyone act this way? What’s it going to take for people to see that people with disabilities are just as much individuals as people without disabilities?

I am not my disability.
I am not your idea of my disability.
I am a person.
See me as a person.
Treat me like a person

*A similar version of this post was written on November 2, 2008

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.

 

Working In A Wheelchair

I had another steroid injection a few weeks ago, which was followed by activity restrictions, all I’ll say about that is that is it’s worse than the injection itself. You wouldn’t think that would be the case given that I’m a wheelchair user, but the truth is it’s rare that I use my wheelchair on a daily basis. I don’t use it at work, mainly because the building isn’t accessible.

Let me back up: I have used my wheelchair at work in the past so I have an idea of what works and what doesn’t but it was years ago and with employee turnover it was going to feel like the 1st day of school, which I did not account for. What I thought would be a no brainer actually required thought, at times more than it should.

I decided to bring my wheelchair with me to work, here’s what happened.

In a lot of ways it was easier to get around (and easier to explain why I couldn’t do something). The work days didn’t suck, at least not any more than they would usually. However, there were moments of pure frustration.

-I was able to complete some tasks in a fraction of the time I can do on my feet.

-I can do these same tasks faster than my coworkers.

-I’m on a different level, which is good and bad.

-It’s harder to reach the phone.

-Computers are at the wrong level, unless I want to practice typing with my chin (or my tongue).

-People worried I had a “setback” or “regressing” (for the record CP itself does not change like MS).

-People thought I was ill.

-People wouldn’t talk to me, instead they’d talk over me, literally.

-People made an extra effort to speak with me.

-I backed over one person’s foot.

-People thought I’d deliberately run into them (prior to the foot incident).

-I got asked “Do you have a license for that thing?” so many times I got annoyed with being annoyed by the question.

-My hip was really sore by the end of the day, but my back didn’t hurt.

I wish I could tell you I learned something new and more importantly profound about the whole experience but it just affirmed what I already know because I’ve already experienced it before; the difference being this was in a microcosm of society.

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.

 

Planes, Trains, And Automobiles

I love traveling, or at least I want to love it.

Don’t be surprised if there’s a part two for this; which would probably include Boats, Buses, and Piggybacks.

Here’s the funny thing about my traveling experience.

I don’t really have any.

I’ve traveled to various places in the United States but I’ve barely been out of the country. I’ve had a passport for years but it’s empty, I’ve used it solely for identification reasons.

What’s really insane is that every time I’ve had the opportunity to travel, particularly overseas, in the last few years I’ve looked for reasons not to go. Actually it hasn’t been that difficult, which is probably part of the problem in itself, I have limited finances, I can’t get the time off, or some other reason contingent on the situation.

Rumor has it I may or may not have come from gypsy stock but my direct ancestors really like to stay put. Personally I find the whole thing incredibly boring, but the funny thing is it takes a lot more for me to travel than most people.

Traveling by car may seem like the easiest and most obvious choice for a lot of reasons. I have a love/hate relationship with it. If it’s over 6 hours & there are more than 4 people in the car, it really should be a minivan. It’s not physically uncomfortable as much as it is mentally taxing.

However, there is something to be said for setting your own pace. Like stopping whenever you’d like to take care of any need(s) that may come up. Like a dire need to pee without having to worry about one small bathroom everyone else has used in a small time frame. Naps on the road are also more conducive, as are discovering local awesome places to eat, and music to set the mood.

Whenever you find yourself on the verge of a road trip be sure to have a travel buddy. It makes the trip much better, or worse but usually better.

Train travel. This is the mode of transportation I’ve most frequented. I pretty much know it backwards, forwards, and sideways. I also have plenty of stories to prove it. I’ve been on everything from the subway to national train lines. Each has their positives and negatives, like most things. Most times it’s a choice between riding the rails and taking flight for most people. If you’re big on people watching the train is the way to go, by a landslide.

However frequent delays and overcrowding is always hanging over your head, at least if you’re me. I’ve found it’s often a lot easier than one would think for people with disabilities (the actual stations are often another story). But regardless you need to do your research, not all cars have ramp access for example. And if you’re going on a longer trip via train it’s always a good idea to give people a heads up since wheelchair spots are located close to the oversized luggage compartments & they’ll want to have an actual space for you.

Travel buddies are optional. I’m not one to make a habit of it on a train but it helps the trip be “less stale” if you frequently take the same route.

Lastly my personal favorite, up into the wild blue yonder, flight; however, this is when most bad experiences happen. Basically the best advice I can give is plan for the worst (& every possible contingency) & hope for the best. I’ve traveled with and without my wheelchair as well as with and without AFOs so no experience has been the same. Regardless of when & how I fly I try to be as direct & clear as possible with all the staff I come in contact with.

When I was preparing to fly to the west coast I deliberately booked a nonstop flight. It may have cost more but it was a big trip so I wanted to remove as many travel barriers as possible, like missing a connecting flight.

I had originally planned on shipping my chair since I pictured getting though a crowed airport to be easier without it as long as I had the physical stamina. However, one of my contact people told me it would be better to carry it on my person than ship it because there was less of a chance of damage. I understood his point once I saw my frame had scratches after deplaning & my luggage was “lost” after another trip.

If I have to have connecting flights I request someone meet me at the gate to take me to my next flight. For one I don’t want to get lost. Another reason it’s a lot easier to ask for when booking your flight than when you get to the airport, and since it’s only accomplished 50% of the time, just plan ahead to avoid arguments with airport staff.

When flying to my cousin’s wedding in the Midwest I had a connecting flight & little room for error. I requested someone meet me at the gate to take me to my connecting flight. After waiting for everyone else to deplane & having the flight attendant page someone to the gate no one showed up. I was prepared to get to my next gate myself since I was told it wasn’t very far away. Instead the pilot (from my 1st flight) took me to my next gate. Up until then I had no preferences for certain airlines but I do now. How many pilots do you think would do that? (I only wish I had gotten his name to send him a thank you card afterwards)

I’ve done more flying alone than I have with someone(s) else so that’s my comfort level. But if I’m flying with someone(s) I prefer that they’ve flown before. First time flyers take more mental effort from me than I’m usually willing to give.

Traveling with a disability is possible, sometimes enjoyable, and often memorable. It may take some more thought & effort on your part than your peers but it’s defiantly worth it.

I plan on traveling more in my lifetime, once I run out of excuses.

*A similar version of this post first appeared on an old blog on March 8, 2012

Standing Is Stupid

Being the occasional reader of What Do You Do, Dear? I came across a poem by Shel Silverstein, not surprising since Mary Evelyn is an elementary school librarian, that made me laugh and shake my head in agreement. I don’t remember if I ever heard or read it during my early school days, but even if I did I think it takes on a different meaning for me now.

It goes….

“Standing is stupid,
Crawling’s a curse,
Skipping is silly,
Walking is worse.
Hopping is hopeless,
Jumping’s a chore,
Sitting is senseless,
Leaning’s a bore.
Running’s ridiculous,
Jogging’s insane-
Guess I’ll go upstairs and
Lie down again.”
Shel Silverstein, A Light in the Attic

I don’t know why, or when it happened, but for some reason standing, and walking even more so, became “the line in the sand” for people with Cerebral Palsy but it is.

I regularly get emails asking if I can walk, or asking at what age I learned to walk, or if I think someone else (often whom I’ve never met) will ever walk.

I am not a doctor, although I’ve always thought it would be cool to play one on TV.

I need to also tell you that doctors, although smart, do not know everything; nor can they inconclusively predict the future. Plus, technology and medicine is growing so much more quickly than it did even just 5 years ago, even I have trouble accepting a conclusive prognosis of anything.

I’m not saying that if you’re told your child or yourself will never walk to accept that and move on. It takes a lot to learn to walk when you have a condition that makes nero-muscular coordination difficult, so not only does it take a lot of work it takes time and money and often it does take a village. I’m not saying it’s not worth the effort but it will come with some sacrifices with no real guarantees of the desired end result. So it’s worth weighing the pros and cons, and often more than once.

Walking isn’t always all it’s cracked up to be.

In fact, able bodied people spend time trying to figure out ways how to walk less but when you have a disability that’s all anyone seems to want to focus on.

I used to say to people, “I use a wheelchair but I can walk,” even when no one asked; even I felt like I had to tell people that I can walk.

I no longer volunteer such information because a person’s ability to walk or not does not give their life value. Because a person can walk does not mean their life is more meaningful than the life of someone who cannot, or even makes the conscious decision not to for the good of one’s own health (in my opinion).

The fact that I can walk around the grocery store doesn’t mean much if I’m in too much pain to put away the groceries when I get home.

The ability to board an airplane without an aisle chair is fantastic but it doesn’t help me when I have 20 minutes to get from one gate to another if the terminal is the size of the small city.

The capability to walk down the sidewalk isn’t worth much if every time you do it you’re at risk for falling and hurting yourself, or getting blisters on your feet so large that you shouldn’t put on shoes for a few days afterwards.

Being able to enjoy a rare lunch out with friends loses something if you know you’re going to end the day early in part to the side effects of high powered pain killers and pure exhaustion.

The idea that you can do something doesn’t always mean you should, and yes that does apply here as well.

If the use of one’s legs was really so important to someone’s daily life, then wouldn’t they become lifeless the moment their legs couldn’t do anything? You need a brain, a heart, lungs, and a host of functional organs to live. If you really think about it, your legs don’t have to be able to allow you to stand up, walk, or run, in order to live.

Wheelchair users, or anyone else who uses assistance for mobility, can and do live full and productive lives, and they’re happy while they’re doing it too. A wheelchair doesn’t automatically confine a person or make them “less than.” In fact, for many people using a wheelchair, or crutches, a cane, or a walker, opens up a world of opportunities.

So next time you’re thinking about what makes a life more or less meaningful consider the words of Shel Silverstein and then try and learn something about someone who doesn’t walk as much as you might.

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