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.

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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

Crazy Little Thing Called CP

I can’t tell you about the craziest thing I’ve heard, true or not, about Cerebral Palsy because there’s been so many. Also, I can pretty much guarantee that at least one of my readers has heard something far more ridiculous so I’m not even going to go there.

Instead I’ll share a few vlogs with you:

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.

 

Disability & Body Image

Body image is a big issue and so is disability so disability and body image is a big(ger) issue. I’ve watched a few videos related to the “body image tag” from Robyn, Annie, and Gabby in particular, and it got me thinking (not enough to start a Y0uTube channel mind you). Here are my thoughts, in the hopes that maybe it’ll help someone in some way.

1) Do you think you are “traditionally/mainstream” attractive? Does it matter to you?

I don’t think I’m “traditionally/mainstream” attractive for a few reasons but the one I’d like to mention is because I have a disability. Mainstream society, thanks in big part to the media, doesn’t find disability traditionally attractive. So no I’m not traditionally attractive, but there is “a lid for every pot,” as they say, so I’m attractive to someone (hopefully not in that devotee way).

It doesn’t matter to me that I’m not traditionally attractive. I’ve put too much work into my body to make it functionally and “workable” for myself, but I’d be lying if I didn’t say I sometimes care, even slightly. What matters more to me is the devotee issue. From my experience I struggle with people finding me attractive without some sort of fetish attached to it

2) What was your biggest insecurity when you were a teenager? What is it now? How has your body image changed?

My biggest insecurity as a teenager was that people would notice that I was disabled. In hindsight it seems pretty ridiculous since it’s obvious that I have a disability. I wasn’t big on using mobility aids as a teenager because I wanted to blend in, plus I didn’t think I needed them.

My biggest insecurity is wondering if people are looking at me and why.  I know people look at me. It’s so commonplace in my life now that I hardly notice it but when I do I wonder why they’re looking at me. Are they shocked? Inspired? Unimpressed?

My body image has changed a lot especially in the last few years and it has a lot to do with my last surgery. I know most people think/feel that your self-image should be tied to an event or something else and I used to say the same thing. Then I turned 30 and things became solidified even more. I’ve come to appreciate what my body has become and the work I put into it. I’ve also come to accept that I’m probably not anyone’s idea of “perfect” but I am who I am take it or leave it.

3) How does your style play into your body image?

Style does play a part in my body image. I try to put some effort into my style knowing that in a way how I portray myself will impact how someone else will view people with disabilities. I don’t spend hours getting ready every day but I do make sure my clothes match and are suitable for whatever I have planned that day. Also when I feel like I look good I tend to tend to be in a better mood.

4) How do you define your beauty?

Is it bad that this is the hardest question for me to answer? I know I’m not obviously beautiful and I’m totally fine with that. But it’s not like I can point to one thing and tell you that’s what makes me beautiful either, probably because it depends on the day. I do have this odd sense of satisfaction of seeing a good photograph and realizing I’m either in it or I took it.

Why I: Am An “In-Between-er”

I’m always looking for topics to relate to or give my two cents on. I’d like to say it’s because I like to keep up with what’s going on in the disability community, particularly for those living with CP obviously, but the truth is sometimes it’s just hard to think.

There’s one video in particular that I tend to think of when I’m asked about my physical abilities.

I, like Amanda, am very much an in-between-er.

If you ask anyone who has been involved in my medical care I’m pretty sure they’d agree as well, at least medically. It’s been a case of “this or that” ever since I can remember.

If I stopped to think about it my day to day life hasn’t been much different either.

-I’ve been labeled “too disabled” and “not disabled enough” in the same conversation.

-I may have hiked one of the most famous mountains in the Northwest but I can’t get through the grocery store without some form of pain, and let’s just not talk about discount stores.

-I can navigate some of the biggest airports in the world but I can’t drive myself down the street.

-I can swim faster than most people I know but they can walk faster than I can run, ever.

-I’ve taken care of groups of children with great success on my own, yet I’ve had people doubt my ability to care for a child of my own (and I don’t even have a child, at least not yet).

-People assume I live off the government, which is wrong, I don’t receive any government assistance and I am currently debt free.

-I have a learning disability but I was often in the top percentage of my classmates in my academic career.

-I can cook dinner for a group of friends but I can’t carry a cup with something in it without causing a spill, usually.

-I can lift (and/or press) more than my body weight, but if someone bumps in to me, even slightly, I’ll often stumble.

-I’m seen as young and capable in the everyday workplace but too old and risky in medicine.

-As much as I’ve accomplished I’m constantly having to prove myself.

-I have been judged for being too disabled & not disabled enough in the same conversation.

-I’ve had once in a lifetime experiences that not everyone gets to experience yet I struggle to complete tasks people do every day.

-Just because I can or can’t do something today doesn’t mean I’ll be able to do it tomorrow and vice versa.

*A similar version of this post first appeared on an old blog on September 19, 2013

Suffering, Cerebral Palsy & The Media

There’s a common, and undying, misconception that everyone with a disability suffers daily and suffers greatly. I don’t know when or how it started but I wish it wouldn’t be such a big focal point. I even took a class on the Catholic understanding of suffering in an effort to understand something about why suffering is such a focus for people.

And I have to tell you I just don’t get it, from the point of the sufferer or the observer of suffering, and I’ve been firmly planted on both sides, sometimes simultaneously.

One of the biggest things that annoys people in the CP community is that almost all press we receive starts with “suffers from Cerebral Palsy” or “has overcome Cerebral Palsy.” Now I can’t speak for everyone, although I’m not the first person to say this, but I do not suffer from Cerebral Palsy.

Yes, there are days when I am in constant pain, but I cannot call that suffering. Pain can be a cause of suffering but I wouldn’t go as far as to say this is the case here.

I’ve heard it said, I’ve also read it and said it, that “A disability doesn’t make someone feel disabled, the fact that no one thought to build a ramp does.”

Just what does that mean exactly?

Simply, or maybe not so, disability often it is not the disability itself that causes suffering. It’s other people’s perception of disability that creates the suffering.

I suffer (and so does the rest of the CP community) when people portray us as suffering. It’s not true for one thing and the fact that it’s not true just feeds into the misconceptions the able-bodied community has of the disability community.

Then there’s the idea that we can overcome Cerebral Palsy. No, Cerebral Palsy is part of who we are. You can’t overcome part of who you are, just like you can’t overcome having a certain hair or eye color. You can cover it up but it’s still there underneath.

The other thing is I don’t want to overcome who I am. Wanting to overcome who I am leads people to think that there’s something wrong with who I am and there isn’t. Granted that’s just my opinion.

I know I complain a lot about Cerebral Palsy not getting enough press so you would think I’d be happy to take what I can get.

But I’d rather the media get their facts straight before putting individuals with Cerebral Palsy into the spotlight.

We get so little attention that when we do it can be frustrating when what’s deemed as “facts” aren’t. We’re getting the attention but it’s not in the best way. Because contrary to what so many people seem to think now not all press is good press.

What I’d like to see is for more articles, videos, news stories, etc. telling the real story of those living with Cerebral Palsy. We’re just like normal able-bodied people achieving our goals and dreams, not suffering, not overcoming in spite of our disability.

Tales From A Late Adopter

You know how some people claim to be early adopters?

Well, I’m not, except for maybe blogging, and F@cebook, and neither of those were totally my decision.

My 1st computer was over 7 years old when I decided to get a new one. It was supposed to have Wi-Fi capability when I bought it but I don’t think it really did.

I’m still on my 1st smart phone, which needed to be replaced years ago, and didn’t even know what a podcast was until after attending my 1st CNMC (an ignorance I have since more than made up for). Oh and I still try and build websites in HTML whenever I can get away with it.

And it takes me roughly and hour to make a minute long video that I can just barely stomach watching.

My 2nd computer had Wi-Fi capability but I didn’t actually get Wi-Fi for a few years afterwards, and even then I didn’t use it unless I was in a Wi-Fi only location.

If I’m anything, I’m a reluctant adopter.

So when my computer, my 2nd one, died a quick, yet horrible, death a few weeks ago I just about when bat crap crazy. (1) I’ve never had a computer completely die on me before and (2) I had class starting in a matter of weeks, I had to make a decision, and fast.

It’s really really rare that I wish I was in a relationship but this was one of those times, if for no other reason than I’d have someone capable of making such decisions for me and then getting me settled without causing me stress.

Thankfully I had everything backed up, which I’ve never done before but won’t ever skip that step again, so that was one thing I didn’t have to worry about. But in my rush I didn’t do my usual vetting process.

And while I was waiting for news on my computer I went so over my data limit on my phone that I couldn’t even add any additional data to my plan. I had a big “no” symbol in my notifications for days.

I hadn’t kept up on the software upgrades on my tablet for so long that it took days to get that taken care of before I could even use it effectively.

My new computer didn’t come with office already installed. I realized that in the store but knew I had two product codes at home, so why bother. Well the joke’s on me because now that I need one I can’t find either one of them anywhere.

It also doesn’t have a disk (or rather CD) drive so when I went to look for one I got a little freaked out. How would I install anything?

Also the power button is on the side instead of near the keyboard. Once I found it I wondered what team of people thought it would be a great idea to put a power button so easily accessible to anything. I’ve lost track of the number of times I’ve turned it off without meaning to.

Although I’m a reluctant adopter I hesitate to call in any outside help for anything. I don’t read directions and although I typically purchase additional tech support I rarely, if ever, call them.

I made more calls to set up this computer than I have ever. It makes me feel defeated in a way, because I hate asking for help, especially when it’s something many people easily master. But stress and a tight timeline won out, at least this time.

One of the biggest reasons why I am a late adopter is because I don’t like having to work out the little bugs that come with the 1st generation of so many products. So I usually wait and keep my ear to the ground before making any major purchase.

Until my motherboard dies, then it’s time to run to the store before having a nervous breakdown, because who can live without a computer these days?

I went with the “upgraded” version of what use to be very much the other half of my brain, which is lying closed up in an old dusty box like a technological casket, because I didn’t have the time, or the patience to figure out something new (and I still spend hours on the phone with various tech support people).

Am I happy with it? No. But it probably has more to do with a rushed purchase rather than an unsatisfactory product.

Now my next task? To upgrade my phone and maybe use the gm@il account I created for myself a few months ago.

I need to do something before all of my devices are on the verge of another technological breakdown, and maybe do a better job at keeping up with the rest of the planet.

International Day Of Acceptance

IDoA

When I started gaining attention for being an “adult with special needs” (seriously that’s what I’ve been called, more than one should), I spent time reading other blogs, mainly seeing if there were any common myths out there that needed to be debunked (not many worth debunking, for the record).

I noticed that a few people, mostly CP moms (as in moms who have kids who have CP), would mention something called 3E Love. Curiosity got the best of me so I checked out 3E Love for myself.

I bought my 1st wheelchair heart tee shirt (& sweatpants) at my first Abilities Expo. I LOVE the sweatpants. I wonder how I ever traveled without them.

I bought my dad his first shirt before his first Abilities Expo, and did the same for my cousin (it’s become a tradition I guess).

Several people in my life have 3E Love products; my dad even uses a 3E Love sicker to cover up a ding on his car.

I was able to hear Stevie (also known as Annie’s brother) share the story of 3E Love & speak to him personally a few times.

I never had the opportunity to meet Annie but I have a feeling I would’ve liked her based on what I know about her. Our shared skill of using kitchen tools as accessibility aids notwithstanding, I’m pretty sure she was an awesome person to know.

(I can do a lot with grilling tongs myself)

3E Love & the Wheelchair Heart were created by Annie (also known as Stevie’s sister).

wheelieheart

Stevie & his family started the International Day of Acceptance as a way of remembering Annie.

Join in the movement of acceptance.

*A similar version of this post first appeared on an old blog on January 20, 2014

Proselytizing & Disability

This isn’t exactly a Catholic topic, but there’s three main reasons I wanted to write about it.

  • I like that the Catholic Church isn’t as into proselytizing as other denominations of Christianity.
  • I don’t think I’d be wrong in assuming most, if not everyone, with a disability has a proselytizing story, not unlike prayer related stories.
  • It’s a topic that needs to be discussed from anther, potential, point of view.

I’ve lost track of the amount of times I’ve been proselytized to. Now I typically listen for 15-20 seconds, if that, plaster on a small smile and nod every once and a while. Then the voice of Charlie Brown’s teacher just comes out of their mouth.

The smile & the nod is just an attempt to avoid becoming Peppermint Patti, which doesn’t always work. Yes, I have almost fallen asleep while people are trying to have a meaningful conversation with me.

I hate to say it (well not really) but it’s one of the reasons why I don’t like striking up a casual conversation with anyone I don’t know in public. I know my wheelchair makes me an “easy target” for a lot of things so if I want to avoid being such an easy target I have to be “less friendly.”

I’ve been proselytized to at the public pool and the state fair, and those are just two of the more memorable ones.

Usually I say very little, if anything in return. How can I when I’m not really paying attention? But there are times when I do.

During a state fair an older women using a wheelchair passed me and when were close enough to each other she tried to take my hand (I don’t do that kind of thing so I keep my hands on my rims and pretend not to notice) and said, “You know, someday you and I won’t need these things……”

I responded with “I like my wheelchair, and who I am,” smiled, and went on with my day (hoping I won’t see her again).

Full disclosure moment: One of my biggest problems with Protestant denominations is the emphasis on proselytizing, particularly towards whoever they deem “weak and vulnerable” (which those with disabilities are usually included).

I’m not going to pretend that everyone has my same take on the subject so I’m going to give you my point of view.

One of the biggest issues I have when people proselytize to me is the constant need to compare. It’s a problem I have anyway but add the proselytizing aspect to it and my brain tries to crawl out of my skull until you’re done with your sales pitch.

Most recently, although it wasn’t the first time, nor will it probably be the last, I was compared to Joni Eareckson Tata. Now I’m not going to say I don’t have anything in common with her but I doubt I have as much as in common with her as people thing or that we share the commonalities that people think.

I’ve been told, multiple times by multiple people, that she would be an ultimate source of inspiration for me. That’s a pretty tall order from someone who doesn’t know me and a pretty big burden to put on someone else who isn’t even directly involved in the conversation, nothing against Joni personally.

Think about what you’re going to say before you say it, like prayer, the saints, and in a way miracles, how you say it is more important than that you say it. Individuals with disabilities have a hard time with certain topics for a variety of reasons, which includes but is not limited to, previous unpleasant encounters.

It’s OK to want to share your faith with others but please get to know someone before you start talking about such personal matters that can run so deep. But if you must say something keep it short and sweet and positive. Telling someone to “Have a good day” can mean much more than anything from the “Do you know Jesus?” category.

A Tale Of 10 Toes

I, like most people, assume have 10 toes.

I, however, don’t know I have 10 toes unless I’m looking at them.

This is for two reasons; I have horrible Peripheral vision and low depth perception. I literally cannot see my feet in front of my face. I’ve also had a Selective Dorsal Rhizotomy (SDR) from L1-S2, so I do not have full sensation and/or movement from L1-S2.

At one point I was able to move my toes at will, or as much as possible as someone with CP can. However it was so long ago I have no memory of ever being able to do so.

I few weeks ago (or maybe it’s a month by now) my PT wanted me to try doing Monster Walks. I thought he was insane for suggesting it but I relented and demanded that the exercise be modified.

Placing the band above my knees gave me a fighting chance of not falling on my face after two seconds. In fact I made it one lap around the gym, with support (aka fall prevention) from my PT (and no I have not walked backward, nor do I ever plan to, ever).

I left PT shocked that I was able to do the same exercise I’ve seen countless others do over the past year with practically no difficultly (considering how things could’ve gone).

And then I went to bed, and tried to sleep.

Nerve pain kept me awake for hours.

You know that buzzing noise that comes from the lights in old school gyms? That’s what my legs felt like; a constant flow of electricity running through my legs.

It’s happened before due to different reasons but it’s never fun. Also it always seems to happen after midnight and last for hours (aka prime sleeping time).

It’s painful, although not as painful as spasms, but mostly it’s annoying because I just have to wait for it to go away.

I realized I had two choices: 1) Battle through the nerve pain hoping for some sort of breakthrough or 2) Quit.

The later was really tempting, but given that I wasn’t having spasms and nerve pain simultaneously I went for the 1st option (with the support of my PT).

After a few sessions of monster walks I realized I could feel my 1st & 5th (the big toe & little toe) toes on each foot.

Then I could feel the 1st, 2nd, 4th & 5th toes on one foot and the 1st, 3rd & 5th toes on the other foot. It seems unbelievable and in a way it is, but it’s also annoying.

I didn’t realize how often a bang my toes into things and drop things on my feet without a second thought. Nor did I realize how often I trip over my own toes by rolling them under my foot and then taking a step.

I know what you’re thinking (probably), how is it possible for someone to regain sensation after almost 30 years? I don’t know.

I’m not sure anyone knows (but if you know please tell me).

Will I regain sensation in my remaining toes? I don’t know.

Will I be able to move any or all of my toes at will at some point? I don’t know that either.

At this point I’d settle for not walking into things, or over my own toes, dropping things on them, or scrapping them up (which has happened a lot lately).

I have 10 toes (well 7 confirmed); now I actually know it.