On Ice Buckets

You can probably guess what this post is going to be about and you’re not wrong, at least not totally.

I admire what the Ice Bucket Challenge has done to bring awareness to ALS. However I am completely and utterly over seeing videos over take my social media feeds.

I’d don’t have objections to “fundraising stunts,” I really don’t. Anyone who has ever been involved in soliciting donations knows anything that can get money (and attention) is good, almost.

I know funds from ALS research are at an all-time high. I’m not going to try and tell you that I have a problem with that, because I don’t (you’d have to be a certifiable loon to have a problem with raising money for underfunded research).

However the whole thing seems so backwards to me.

The object is to NOT want to pour ice water over your head. Therefore you donate money.

Your F@cebook feed SHOULDN’T fill up with videos of people dumping ice all over themselves.

Right?

Well apparently not.

There’s also the issue of ALS awareness, as in, what ALS actually is.

It, like CP, is greatly misunderstood.

(What is it about neuro –muscular conditions? It feels like “misunderstanding” is part of the conditions themselves.)

While I’m not the biggest fan of disability simulations on the whole I think any fundraising “stunt” should bring awareness to the actual condition. ALS does not make you cold as ice/ice water. It does however rob a person of any and all muscle usage.

I should also tell you that the (F)JV that’s still alive and well inside me has a real problem with wasting water, especially when areas of the country are experiencing severe drought. It’s probably not as drastic as one of those “cutting off the nose to spite the face” deals, but I think you get where I’m going with this, if not just think about it for a while.

I have watched (and posted) few ice bucket challenge videos (or relevant posts) so I’m not entirely blame free here. So watch Father Kyle Sanders’ video & read Maria Johnson’s post if you want to know what I consider “cream of the crop” of all this mess.

I’ve heard rumblings of wanting to do “ice bucket challenges” for other illnesses/conditions. While it’s tempting to “strike while the iron is hot” there’s also the danger of “fundraising fatigue,” not to mention lacking originality and creativity.

Save your ice water and buckets for summertime fun, putting out actual fires, or gardening.

Get out the checkbook (or debit card) and give your money, and better yet, your companionship.

Expanding Boarders, More Connection

I took one of those quizzes on F@cebok that tell you how “fill-in-the-blank” you are. I don’t usually take them, but I was working on a paper, so I was primed for any and every distraction possible.

Plus this quiz was “How much of a Washingtonian are you?” Even though I haven’t lived in Washington for a few years (and it wasn’t for very long), I wanted to see if I still had “it;” that Washington spirit that rubs off on you and then runs through your veins before long.

Congratulations, you are a true Washingtonian! You are tough when the going gets tough, and outdoor activities are the norm for you. You have the “Bring it On” attitude regardless of the situation, be it with nature’s challenges or adventures in the city. You are familiar with “Hempfest” and why you shouldn’t bring children to it. You are LOUD & PROUD for your sports teams, and know what it’s like to be a 12th man fan. You display pride in your beautiful state and exude spirit only seen in a true Washingtonian!

Yup, still got “it.”

I went to the most recent Abilities Expo in Boston Yes, another one, but there probably won’t be a typical post about it, because this expo was different than the others for me.

I have a capstone/thesis/dissertation (whatever it’ll be called by the time I have to do it) on the horizon. I was advised to think about what I’d like to focus on since it’s best to tie it to an interest or two (also it helps to try and tie things together as you go). So I not-so-jokingly called this expo “a fact finding mission.” Since there’s not much point in doing a major project based on next to no information with months to go. If info is scarce I’d rather start looking now thanks-so-much.

In the midst of my fact finding I met a fellow “Spokane Girl” (except she was born and raised in Spokane).

I also ran into one of my best friends from college (who I haven’t seen since graduation) who was there with a fellow classmate who sustained a SCI before our senior year. I’d be lying if I didn’t admit that I thought the whole thing was a dream when she walked towards me.

I also caught up with old friends and made a few new ones, of course. Who doesn’t at an Abilities Expo?

I’ve been finding it slightly ironic that most people are becoming more disconnected as connecting becomes more convenient. Yet some communities are becoming more connected, just as social media intended.

And then there’s me, whose life has become an offshoot of “6 degrees of Kevin Bacon,” with and without the help of social media.

I’m not complaining, just pointing out an oddity.

Expanding of boarders, of any aspect, can be scary. We can thank the recent Ebola outbreak for giving us a very real reminder of that. However it’s pretty amazing who you run into just by chance, if you believe in chance.

I’m starting to believe, for real this time not just in the greeting card fashion, that if you’re meant to cross paths with someone you will. It’s only a matter of time, it’s just not up to you.

Welcome To The 1st Day

Have you ever been somewhere and someone tells you, “Welcome to the 1st day of the rest of your life?”

I don’t remember ever being told that directly, but there have been plenty of times when I’ve said it to myself.

5 years ago was no exception.

I wanted to have surgery to save the life I knew and save me from the life I was slipping into. It sounds dramatic, but I promise you it’s not that far off.

I remember getting to my room and being asked whether I’d prefer to lay on my right or left side. I said, “I want to face the window for something to look at.” Once I was “properly propped” I thought, Welcome to the first day of the rest of your life.

I didn’t sleep much the night before; I suspect it had something to do with being heavily sedated for most of the previous day, or the fact that it had occurred to me that I’d have to learn to sleep on my back for the foreseeable future. At some point I found myself staring up at the ceiling (wishing someone had the foresight to decorate the thing) before rounds and I had the same thought, Welcome to the first day of the rest of your life.

I don’t think it’s all that uncommon of a statement to think to yourself; however saying it twice in a twelve hour period is a bit excessive (I blame the drugs).

I’ve been thinking about the “welcome to the 1st day” mentality more than usual lately (for many reasons that need not be listed).

If you (or I) woke up every morning and thought welcome to the 1st day of the rest of your life, would that change anything? What would you do differently, if anything?

Would you hurry or move more slowly?

Would you greet the day with excitement or a sense of impending doom?

Would your goals be different or just their timeline?

Would you make a “bucket list”?

Would you stop doing anything altogether?

I don’t consciously do anything differently 5 years later (or maybe more like 4 since a post-op period should be taken into consideration).

I’m sure I do just by virtue of the fact that I’m not in pain 24 hours a day 7 days a week. Living like that for any period of time, really messes with your head just as much as it messes with you physically.

Things aren’t perfect. It would be nice if they were but it would’ve been a wildly unrealistic request.

Instead I looked out the window of my hospital room and put the pressure on myself to make the most of what I’ve been given.

I think back on my life 5+ years ago & I wonder why I didn’t run into the hospital.

In Which I Cussed Out My Shoes

I went shopping this summer. It’s not really a monumental accomplishment until you take into consideration that the list of things that I hate shopping for keeps getting longer.

The good news is……I finally bought new shoes

ShoesSideSideBottom

Years overdue, obviously.

The bad news is…….they broke.

I was lacing up my shoes for work (because that’s what you have to do sometimes). I heard something rip, well more like pop, and I realized one of the lace holes broke.

It’s hard enough to find one pair of shoes, so obviously I don’t have another pair just lying around & having a lace hole break isn’t an everyday occurrence, so I wasn’t sure how I should handle this situation.

I even wondered if I should call out sick.

I mean, doesn’t the “no shoes. No shirt.” thing apply to the workplace?

Fortunately (or not, depending on your take on this) my mom thought of a workable solution until she could try sewing the hole back together.

I’m walking around with a safety pin in my shoe, just in case the threads can’t hold things together.

Needless to say I’m feeling the slightest bit ridiculous.

I keep looking down at my feet to make sure the pin is still there.

I keep looking down at my feet and cursing the hell out of my shoes (sometimes not that quietly).

Then I curse the factory that made the shoes.

Then I wonder who the hell would design such stupid shoes and think “that’s an awesome idea!.”

I avoid looking down at my feet for too long because I’ll notice the AFO that’s overstayed its welcome & it the main reason for my limited footwear.

And then I inevitably descend into a level of body-shaming that’s just not OK.

I should just stick with cursing out my shoes before this goes even further.

I should really write a letter of dissatisfaction and see if it makes any difference.

Life On Campus

I always thought if I went to grad school I’d live on campus, or close enough that it’s basically campus. Once I realized how impossible that was I knew grad school wasn’t for me (it was just one reason that sealed the deal really). I loved living on campus, so much so that for 30 seconds I considered going back to school just to live on campus (I was delusional, clearly).

I don’t want to say I settled for online learning, because I didn’t. It’s more like reality came knocking. (Gotta love that.)

I prepared myself to settle into a life of online learning (and essentially isolating myself) for the foreseeable future. My best friend had recently finished an online degree program, so I knew it wasn’t like the glossy commercials and print ads.

I was excited when I heard that distance students were encouraged to take part in classes on campus over the summer. It was an incredible experience which surpassed every expectation (and then some) but it wasn’t without some worry.

I was lucky to have visited campus last summer so I had an idea of the lay of the land already. I knew what questions to ask and what to ask for. I also knew I’d be spending the majority of the week in my wheelchair. It would be easier and it does make the most sense.

I ambulated my way through undergrad sans wheelchair. I had one, at home, thousands of miles away, I thought about bringing it with me once, maybe. It wasn’t really mine, but a hand-me-down. I should’ve used it. But at the time it caused more pain than it was supposed to relieve, and I really didn’t want to explain it to roommates (I had yet to grow into my advocacy after all).

Plus campus wasn’t gigantic or busy. Its geographical location was, but not campus itself. Campus was (and to my knowledge still is) a tiny bubble of relative bliss in one of the county’s busiest cities.

Grad school is much different, but not in the ways you’d expect. It’s in a major city, but it’s not a hotbed of activity. Campus is small, in fact it’s tiny. I could in fact get around campus sans wheelchair as well, without much difficulty at all.

However, I am 10 years older than I was when I first started navigating campuses. I also have a wheelchair that I call my own and I have no problem with people seeing me in it.

Using my wheelchair also cuts down on the number of potential situations where I’d consider asking for help, like carrying a tray with food items. It also cuts down on the amount of stress on my spine; my backpack hangs off the back of the chair instead of off my body.

There’s also the matter of proper seating. Standard chairs aren’t designed for short people (very little in the world is) so my feet hardly ever touch the floor, unless I’m sitting on the edge of the chair, neither of which is good for you, especially in daylong classes. Sitting in a chair measured for me is better, it just so happens to have wheels on it.

It may seem a little extreme, but it works for me.
(My own mother even asked why I was using my wheelchair “so much, so if you’re questioning me I’m not surprised)

And there’s always the reason I use a wheelchair in the first place, going long distances. A large part of campus life is exploring life off campus. Without my wheelchair I’d probably keep to a block or two off campus, if that.

Was it completely stress and care free? No.

It always takes a day or two to get myself though doors without looking like I’m completely helpless, for example.

And there was that one morning when I was almost locked out of the classroom building because I couldn’t find the door access & the doorperson was late.

Housing is another matter in itself.

I requested an ADA room. I don’t always need a specific room but I’ve found it’s better to request one than get somewhere and wish I had; although I don’t bother requesting something on a lower floor anymore (but full disclosure being ten stories in the air, or higher, makes me a little panicky).

I know what you’re thinking, why bother put that much thought into a place you’re only going to be a week?

Well the strange thing is I probably wouldn’t have put as much thought into it if I were staying longer. I’d have time to acclimate myself and go to the store for anything I might need. Having a room for a week is more like staying in a hotel; it’s better to get it right once.

I’d like to go into a room and know I can shower with little difficulty, not hope against hope that I won’t break my neck at some point in the process. The same goes for getting into or out of bed since beds seem to be getting higher and higher and my text books don’t provide much height.

Life on campus can be great, if you’re ready for it.