Sign of the Times?

A shorty to get back in the swing of things... If anyone will even see this...

Today I had a session with one of my two therapists & for the second time in a row I walked in & handed her my phone immediately. Cued up to a Facebook/G-Chat I wanted her to read so we could process them. Conversations that when I started seeing her 6 years ago I wouldn't have been able to have, because I didn't have the interpersonal skills to steer them anyway whatsoever. Now I can. I can be in control and express my feelings clearly. We can discuss if what I was able to express what asking for of that person or how I responded to what the other person was asking of me.

I don't view it as a boundary issue (between me and whomever the conversation was with) because I'm not spreading them around. I'm 28, maybe that's why. It's been very helpful to be able to process this at a deeper level then we used to be able to do before my smartphone.

Her: "What EXACTLY did they say?"
Me: "I...don't...know..."

A lot of times what I hear is not what they said. A lot of times 5 days later, I just don't know what either of us said. And then she can't really help me if I have no words.

Now I have ALL THE WORDS. Several hours long conversations she can read entirely in about 10mins. Something 6 years ago we couldn't do because I was just starting to text. On a phone where I had to push a button 4x to get an S. I'm pretty sure G-chat hadn't yet been invented.

I'm in awe of the technology, a sign of the times, and wondering what you think? Do you think it's a boundary issue, because the other person doesn't know I'm sharing a 3hr conversation (don't share them with ANYONE else). Is this something you do? Just curious... I've forwarded emails to her for YEARS.

Voice Recognition Sure Has Changed Since 1998

My grandparents brought us our first computer in 1990, an Apple IIGS, when I was in kindergarten. We were the only family we knew with a CD player and a computer. This post is totally making me feel old.

The computer was really my computer. My parents wanted me to learn how to type. They thought it would be easier than writing. That turned out not to be true, as my lack of depth perception made finding keys on the keyboard really difficult. So much so that I used to get exempt from typing papers and was allowed to hand write them in middle school.

By high school though I had spent enough time on AOL Instant Messenger that my typing speed had improved enough to be able to type my papers. It turned out what I needed was a lot of practice. I remember I was bored once and my father looked at me and said "go in the basement and play some video games. They're good for you." He was thinking about the benefits to my eye hand coordination. If only he knew how much IMing did the same thing but more practically -- I might have gotten more computer time.

It was somewhere in that time period that I got my first computer that I didn't have to share. My parents figured since typing was so difficult I should try voice recognition software. They took me to LINC (now V-LINC) for an AT eval. I think we ended up actually buying Dragon, but I don't remember ever using it. I couldn't get past the training paragraphs. You had to say every word exactly the same every time, and I have CP so that's never going to happen.

A second round of vision therapy (I was really trying to learn how to drive) and all these years of blogging have improved my typing speed a little more. I've gone from it taking at least an hour to type a double spaced page to taking closer to 30 minutes, maybe 45 rarely. I've always been curious how long it takes somebody without CP, so please feel free to leave a comment. Have you ever timed yourself?

When I was a high school freshman I tried dictating my English essays to somebody else. But I'd just get distracted & start talking to them. I've come to believe over the years that I really can only think in my head, and not at all out loud. And I've become quite pleased with the 30 minutes per page typing speed.
 
Until I started using a smartphone in June. When I type I use only 4 fingers. My index, middle, and thumb on my left hand, and only my index finger on my right. But on a touch screen phone I'm pecking with just my left index finger. At least with a keyboard phone I was using 2 fingers. I haven't timed myself on my phone versus a computer, which I need to do, but frankly it's getting frustrating. My new phone has swype, meaning I never have to pick my finger up, which has made it a little faster I'm sure, and also Google Voice on it.

I've been hesitant to try Google Voice, as "I can only thinking my head," but finally decided to start giving it a go sporadically. I've been satisfied enough that I decided to write this whole post using my voice. It's interesting that I even have a cold on top of my CP voice, Google Voice needs no training paragraphs, and that last sentence needed no corrections. neither did that 1, or this 1. Although some have. I Like that 1. It first thought although was also.

Some things I still can't figure out is how to get Google Voice to capitalize the word at the beginning of a sentence, how to get one instead of 1, and 2 times instead of 2 *, or the word period instead of a . When Someone calls or texts me their facebook picture shows up. I have numbers, emails, and profiles linked. For some reason my phone can't "call Mom," But if I say "call Wendy," her numbers pop up and they all say Mom. The first phone I had that had voice dialing, a flip phone, wouldn't call anybody.

Sometime in the future I may go back to V-LINC for another AT eval. Because this AT finally doesn't make me want to scream, and I can just imagine how much better then this the programs are these days that have training paragraphs. And maybe I can think out loud.

Coming Back

I've just been notified that I'll probably be hired probably within the next 6 weeks to do some writing, for money. So in preparation, I'm dusting off the cobwebs from this part of my brain, and rejoining the writing world.

Over the last 6 months I've worked 2 jobs, and then 1, now 2 again soon (this 1 is connected to the job I had over the summer), stopped horseback riding unfortunately, and my psych meds, but continued with therapy, art therapy, massage therapy, my support group, and my personal trainer. I also briefly took up chair yoga, and was in a popular YouTube video at the latest ADAPT protest. I'm happy to say I finally got Medicaid so I can stop feeling like a poser every time I chant "MY MEDICAID MATTERS!"

Glad to be back, hope I still have some readers.

testing

testing with Google Voice for Android

I Forgot Child Life Month!

It was back in March. Well anyway, I found this video, and I think it's totally awesome! To learn more about child life, click the tags below.

Emotions and CP

I have been thinking a lot about anger lately, how it feels, what it means, rage vs anger, etc. My art therapist was like, "What does anger look like?" and hands me a box of oil pastels. Um, yeah, ok... huh? I have no idea. Good thing we ran out of time! But I've been thinking a lot about emotions lately and other things along with it since then. I've also been taking melatonin when I'm not tired just to go to bed because I don't want to do anything else. Not the greatest of things to do...

So the other night in a fit of frustration about wanting/not wanting to take that, I decided to do "BORED" instead of angry; because bored was easy. It took me a few hours to do, because my motor skills aren't the greatest, but I'm more then satisfied with the results. Except that well, I spelled lonely wrong. OOPS... The fact that the TE got cut off of INCOMPLE(TE) was completely accidental, I didn't have the spacing right, but I think that's GREAT!

Then because I liked itand was still in an introspective mood, I did "DEPRESSION" the next day. Notice the difference in color. Significant I think, although not entirely thought through in that way.

And then I kept thinking about it, because I want to do "ANXIETY," but it's not entirely thought out yet. I thought about how if you did a quick word association with me things would come out not making any sense, because the first thing I think of these days when I think of depression is "atrophy."

This is something I don't think I've ever written about on this blog before. How for everyday you just lay around and don't weight bare (just walking to the bathroom and back doesn't count) it takes 3 days of moving around to gain back the muscle mass you lost. How nobody told me this, but I learned years ago when I was hanging out on Disaboom that using a wheelchair in general is a risk factor for osteoporosis, and that there were people with CP in their 50s that were still somewhat ambulatory that were falling and breaking things like 80 year olds fall and break things.

I didn't used to automatically think of "atrophy" when I thought of "depression," but somewhere in the last 4 years these thoughts got burned in my head, so that instead of getting myself out of bed, the last time I went through a decent depression I started taking calcium because I was concerned about what it was doing to my bone density. I don't want to break a hip when I'm 54; 54 is too young. Laying in bed all day, I'd concluded, was no different then sitting in a wheelchair all day.

So here's how it goes:

You say: DEPRESSION

I say: atrophy

You say: ANXIETY

I say: PAINFUL!

You say: MANIA

I say: EXHAUSTING!

Try looking those symptoms up in the DSM. They won't be there. But if you read these 2 old blog posts in combination with this one (if you haven't already), you'll begin to understand how my CP manifests itself in my mood disorder.

If a Tree Falls in the Forrest

Mania

I've come to the conclusion over the last few years that I'm the epitome of "atypical" when it comes to bipolar. But what can I say, other then I'm ME! and I'm odd.

When You Least Expect It...

I was talking to a friend maybe 3 weeks or so ago, give or take, and I said, completely without thinking about it, "There still might be something there, eventually, but in the meantime, it's his loss. I need to start looking, because I have something to offer someone." Or as I like to put it (there's a cute story behind it for another time) "Some Guy."

If I was someone who gasped, I would have let out a gasp right then. Who is this person uttering those words, "I have something to offer someone"? Not me. Not the person who used to sit in her room and cry because no one would ever love her. Not the person who used to think using a chair made her a burden. Not the person who has been consumed with apathy for well over a year. Not the person who always uses her failures as data to prove she's always going to be a failure. (THANKS former shrink!)

But yet I can't deny the fact that I did say it, when I least expected it. "...it's his loss. I need to start looking, because I have something to offer someone (Some Guy)." Where that sudden burst of self-esteem came from I might never know, but it gives me some hope that maybe over all these years I've made some progress somewhere.

Now if only I could make some progress in the laundry/dishes department I might get my life somewhere...

Triggers

Thursday I participated in market research. I watched some TV commercials for a website that hasn't yet been launched, and answered questions about them. It was just one hour, and I was compensated with a $100 visa gift card. Easiest $100 I ever made!

They said to turn your phones off. I put mine on vibrate. When we were just about wrapping up, someone's phone went off.

They said to turn your phones off! I thought

Then I thought

Maybe her ride is here.

Then I thought

Maybe that's an alarm.

Then I thought

Shit! I never took my meds today! and immdeiately reached for my keys to get them...

On Privilege Part 3 I think

I wanted to write about this 2 weeks ago, and am getting to it on the eve of a much needed massage appt. I said in an earlier post that I probably wouldn't write about the national action, but I guess in a sense I am. National actions are generally painful for a lot of people. I can't speak for other disabilities, but with CP, a chronic pain condition, being out all day with limited positioning options for days at a time in unpredictable weather can increase spasticity to the point of being near tears.

I stayed in a room with 2 other people with CP and a PA. I of course was in some pain, but I'm not sure I mentioned it. I'm in pain everyday; if I mentioned it to people everyday I'd be such a debbie downer! However, unlike a former friend, I do sometimes, and don't look down on other people who feel the need. I'll most likely empathize with you. And complain with you if your doctor is an idiot. If certain anti-spasticity pills aren't working and cause side effects you don't like, try something else! Although I don't know whether or not this person asked...

Anyway, I feel privileged that I know how my body works; that I ask questions frequently and can make decisions that benefit me. I feel for the people that either cannot, or do not know how. I empathized with the person who told me she was in pain. "My hips hurt. It hurts all the way from my hip to my ribs, and I know I didn't walk at all..." She was having the bad kind of muscle spasms, the kind that pulse if you know what I mean; the kind that make me actually cry.

"Well of course you're hips hurt! (and of course your ribs hurt I thought in my head) They hurt because your not walking!"

She was in shock that I said such a thing; that I could respond that way. I'm the first person who ever has. Apparently everyone else says "but you weren't even walking!" Except I know that your hip flexors attach to your pelvis and then cross under your abs diagonally and attach part way up your spine. I also know that the back my chair, unlike most peoples, has the ability to shift from a 90 degree angle all the way to 180 degrees flat, and is drivable up to 125 degrees, allowing me to change the position of my hips back and forth throughout the day. Most people have tilt, which counteracts gravity or some such thing, but doesn't change the way your body is bent. Your head goes closer to the floor, your feet go up in the air, but your back and your hips are bent the same way all day. I'll wait while you come to a logical conclusion...

Which brings me to my massage. I'm privileged enough that I have control of 42% of my income, and I'm privileged enough that I have a total income that is over 300% of SSI. A lot of disabled people don't have incomes that high and don't have any control over the little that they do have. I'm privileged enough that as of July when I started working I have a 15% increase in my income and that I don't have to use it on food, clothing, or shelter. I'm privileged enough and educated enough to be able to use this extra resource to pay for non-reimbursable medical expenses. Not everyone can get all they need. For a long time I couldn't, but now I can.

Depending on how you look at my monthly expenses, I spend half of my paycheck every month on massage appointments. I don't view it that way. I view it as 10%, as I shifted money from other things to cover it, but it comes to 7.5% of my income either way you look at it. It would be 45% of an SSI check.

I'm privileged enough that I know how to use the internet, can research and ask questions, and was able to find a massage therapist who is walking distance from my apartment -- she's not even a block! I don't have to deal with paratransit to get there! I'm privileged enough that she treats me sliding scale, and that we didn't have to have an awkward conversation about it.

I'm privileged enough that I was able to schedule a massage appointment 24hrs before I left for DC, and less then an hr after I got home. I was lucky enough to not be in nearly as much pain as I was in the fall, and wanted so badly to give this person my appointment. Except her group home controls all of her money, and I've never met a massage therapist that would treat someone for free. It's exhausting work, and imagine what would happen if that got out! Plus this person lives aprox 20mi away, and paratransit's a bitch!

And so I sit here contemplating my privilege once again, and once again I feel guilty about it. I'm a "have" who knows way too many "have nots." This isn't a luxury. It's a necessity and an injustice.

"It isn't visitable"

I've been trying to get online to write this for a few days. On Thurs I came back from my 6th ADAPT National Action in DC (which I'm pretty sure I won't write about, so here are the official action reports) dropped my stuff off in my living room, and left again. I had 2 appointments and somehow managed to time things perfectly. My 2nd appointment was with my new art therapist, which might have been a mistake, because anyone who has ever been to a national action knows it's impossible to focus your brain on anything else over the next few days, other then how much we kicked ass (non-violently of course). She might have thought I was manic, I dunno.

Anyway, a standard activity to start art therapy with is "draw a house, a tree and a person," so the little I was able to focus on doing art, that's what I did. There's a lot you can tell from these three images, not that I know exactly what that is, but if the tree is full of leaves, has bare branches, fruit, a hole in the trunk, that all means something.

My whole life, all the houses I've drawn have been a variation of the house on the right. That isn't the house I grew up in, but it's down the street. Thanks google images. Thanks real estate websites. The house I grew up in had a 2 car garage, so the lines coming off both sides of the house were different, but the main house, the 2 upstairs windows, family room window downstairs left with bushes out front (ours were bigger), steps on the right that lead to the front door, all that is the house I grew up in. Complete with those railings, which were actually a selling point my parents once told me. They didn't have to install any for me.

I'm lucky it was such any easy house to draw. I was compelled to look it up, being that I don't have any pictures of the house and I thought I must have mis-remembered how square it was. I didn't. Looks a bit like a milk carton doesn't it? You know, those little ones you got with your lunch in elementary school...

Usually when I draw a house it's just that milk carton shape with the 2 upstairs windows, curtains instead of the fake shutters, and the front door ends up in the middle, so the family room window is usually missing because of lack of space. About 50% of the time the bushes are there. The garage never is, because years and years ago I decided garages were too hard. I think it had something to do with the roof line. Nothing blog worthy really, you're probably bored, but I had to set everything up you see.

What is blogworthy is the person. When I draw houses I always start with the grass, then the house, then the tree, then the... OH CRAP... Being that I'd literally just gotten back from DC my first thought was to draw the accessible parking spot guy, but all I'd drawn was grass, no sidewalk. Pushing on grass is impossible, at least to me. When I was done she asked me if I wanted to draw anything else. I said no. I wasn't interested in the drawing, didn't like it because of the chair on the grass, but looking back maybe I should have added someone in a powerchair. That way he could have gotten a tow :D

The next thing she asked me was if this looked like the kind of house this person would live in. "No," I said, with kind of a gasp, "it isn't visitable!" Then she looked at me with a look of "HUH?" while I said to myself, "I drew a two story house with steps... why...???" Forget about the fact that I lived in that house with the steps for 19 years and kept my chairs in the garage. This guy's a full timer, and this house doesn't even have a front walk, so forget about an accessible garage.

"Single family homes aren't covered under the ADA, because they're private property..." I said to her. "We've been trying to pass a law for years that says all new construction has to have one no step entrance (front, side, rear, garage, doesn't matter), and a half or full bath on the main floor with a wide enough doorway and walls strong enough to handle grab bars should you choose to install them. That way it's visitable."

Except then I looked at my drawing (man I wish I had it) and realized that it didn't have any steps outside. None. Not one. "Well, wait... and it could have a stair lift..." I realized that none of the other 100 "milk carton" houses I've drawn in my life have ever actually, in reality, had steps outside. Steps are too hard to draw a front view of. This fact had not however prevented me from adding steps to all the other 100 milk carton houses in my mind. Because, you know, all houses, including the one the "milk carton house" was based off of, have steps. So like of course this house has steps! Except it doesn't! Like I said, I wish I had it to post. I had a hypothetically barrier free environment (she told me to go back and add sidewalk and I didn't feel like it) and I had unconsciously added barriers to it.

What does that say about me? What does that mean? Does it say more about society, more about overt ableism then anything about me? Is it an outcome of internalized ableism and oppression, or is it an outcome of realism, my realistic view of society? I've been mystified for 5 days...

Access and Hypocrisy

I feel like I must preface this post by reminding readers that I am a die hard ADAPTer. My commitment flows through my veins 24/7, even if my constant depression and other issues make it almost impossible for other people to see it. However, two things happened over the course of a little over a week that I feel have questioned my credibility. Right now I'm up not able to sleep because of a few things, one of which is that I'm trying to reconcile the values I've developed as an ADAPTer with the positions I'm putting myself into.

The first thing that happened was that over the winter I decided I wanted to see an art therapist. I never liked doing art in my youth; my visual and fine motor deficits causing me to put up walls due to frustration, but after I spent 7 weeks in the summer of 2007 taking Intro to Art Therapy, art became my #1 strategy for avoiding my overwhelming anxiety. I say avoiding because instead of facing my anxiety head on I would spend hours with crayons and markers in an effort to ignore/push aside how uncomfortable I felt. This actually made my anxiety worse.

I created some great art though, and while my art will never hang in a professional gallery, I can no longer say I am "bad at art." I haven't touched my art materials in 2 years though, which is a good thing. A conversation with a friend once went like this:

"You want to come over and do art?"

"I'm not in the mood."

"You don't have to be in a good mood to do art."

"No, I have to be in a bad mood."

However, I noticed some patterns when I was doing art and I don't understand what they mean. I've been wondering all these years and finally over the winter started seeking out an outpatient art therapist.

The second thing that happened was that I decided to pursue an opportunity at work. There has been a recent staff turnover, and I can, most likely, pick up a few hours a week helping to develop our transitioning age youth program, which in 3+ years has never gotten off the ground. I've had some great ideas that the people running it agreed were good, but then nothing happened, and I decided it wasn't wise of me to strong arm them. I decided I wasn't willing to work on this unless I was being compensated.

What do these two things have in common? Both are located in inaccessible offices. The art therapist works within a group which is located in an older building, and her office has 1 step outside. Just 1 -- it'd be easy to ramp. If I ignore the issue, I have to be careful of where I am coming from or going to. I obviously can't bring my chair with me. While I have that "luxury," for lack of a better word, of deciding to do this, I don't feel right about it. In the 5 years I have been seeing my other shrink I have gone to appointments from places like our state capital, or gone straight from her to an ADAPT mtg, lugging bottles of soda on the back of my chair.

The organization I work for operates programs in 5 locations. I already work at 2 of them. One I bring my chair to 6 months out of the year because it's so close to where I live that rolling to work is faster then waiting for paratransit. The other I have brought my chair to twice over the last 10 months, both times because I was coming from somewhere. Out of all 5 locations, my new position, should I choose to ask for it, will be located where our executive offices are. The only location that is completely inaccessible. Not only are there steps up to both of the outside doors (one without any railings), but the main floor, the one where all the programing is, is divided in half by 3 steps. In the two years I have worked here I've rarely had to go there, so I decided not to pick this battle, but if I'm going to be working there regularly, I really don't feel that I need to not go places because I won't be able to get into work afterwards.

The easiest thing to do would be to state that they must move the program, however I don't feel like this would be fair to my new boss (I'd have 4). I'd only be working a partial shift, but with the staff turnover her hours are being expanded so that she's working a full shift that day. If we move locations it cuts into her hours. So I guess that means that I ask (demand?) that ramps be installed. The thing is that 1, I'm not sure it is possible to ramp the inside steps, meaning that if we ramp one set of the outside steps we'd literally be doing half the job, making only half the place accessible. I could get out of my chair and struggle with the inside steps, but not everyone can. A half job is not OK with me. The other thing is that they're not legally required to do this. I have a good enough sense of our finances to know that they can claim "undo hardship." Is it my responsibility to find a way to get ramps installed at a discount, or theirs? This I don't know.

My first inclination was to ignore both of these access issues, push them to the back of my head and pretend that they're OK. I've realized that I can't bring myself to do this, which is actually a relief. I won't spend all my time feeling like a hypocrite. I won't spend all my days feeling like a sell out. I won't be limiting how I plan my days. However if I bring these issues up and they can't be resolved, am I limiting myself in other ways? Am I limiting my ability to knock down my psychological barriers? Am I limiting my ability to develop valuable work skills? I'm not OK with that either.

Which is leaving me at a loss, and is contributing to my insomnia. Anyone know where I should go from here? That is if you've gotten this far...

I Can't Believe He Came Here Like That

Today I had the pleasure of making an unplanned trip to Wegmans. Have I ever said how much I like grocery shopping? Well Wegmans is at the top of my list. If you know me and know my eating habits of the last 6+ months, you wouldn't have been surprised to see me buying 6 Green Giant veggie boxes. People always ask me if I need help when I'm reaching for frozen food, being that most of the time the angles that they are placed into the cases make me have to shift around a lot in order to reach them. I only stand up as a last resort, sometimes passing on something that is too high up, as I'd have to place my basket on the floor in order to do so, and picking it back up if it happens to be full is way more of a challenge then reaching the food while sitting down.

I noticed voices to the left of me, a family discussing which veggies to buy, but as I was both heavily concentrating on wiggling free a box of broccoli with cheese sauce and totaling up the cost of my basket, I didn't pay them any mind. Besides, I didn't get the vibe that there were little children staring at me and they seemed too involved in veggie picking to bother to ask me if I needed help (a relief).

Like any good driver though, when I had my 6 boxes and backed away from the case I turned my head left to make sure I wouldn't run into them. Standing there with his parents was a boy around 14 using a reverse walker. I didn't look at him long enough to notice what his clothes looked like, if he was wearing AFOs, or if the hand grips of his walker were red (they most likely are). I only noticed out of the corner of my eye that he most definitely has CP. I was too focused on repeating "$18.71, $18.71" in my head to think I cared.

[image description: the walker with the red handles, although mine didn't have those hip positioning pads]

Except I did care. The first thought that came into my head was I can't believe he came here like that. The next was, no wonder they understood that I didn't need help... Then I wondered why I thought such a seemingly negative thing about the boy. It was totally a transference thing. Did his parents force him to go grocery shopping against his will? Was he insecure and embarrassed, is he sick to death of preschoolers staring?

I would never have gone out in public using a walker without putting up a fight. People might think I'm r------d. People I'll never see again... But that used to matter to me. I wasn't that kind of cripple, and I didn't want anyone thinking I was.

Then on my way home more thoughts came into my head: Did his parents force him there? Did they force the exercise on him? Doctors have "prescribed" grocery shopping to me in my life. Does he not like his chair? Has he used a walker since he was a toddler so that after over a decade he's OK with it? I have used one only here and there. Did he like not walk until he was 10; has he bought into the "people who walk are better, I'll use my chair over my dead body" rhetoric? Been there done that.

Then I felt sorry for him. Wegmans is the biggest grocery store I've ever been to. As I have trouble finding things and often have to walk back and forth around the store or up and down the same aisle three times in order to find things, I have gone there on foot and left not being able to stand for the rest of the day. Does he not have a powerchair? Is he mortified at the thought of his parents pushing him in public? I most certainly was at that age. He doesn't have to go home and collapse tonight. I didn't.

See what I mean, transference? I was having flashbacks to 1999. All I can hope was that they were flashing forward, noticing that I was alone, doing my shopping independently, and wondering how I got there. Did I drive, take paratransit? I actually had rolled the mile and a quarter from the last place I was, and then took the train to the bus and rolled the last 2 blocks home.

Do his parents have more hope for his future now then they did before we bumped into each other? Do they see less dependence for their son and more independence? Do they wonder if I live alone? The only exchange we had was the mom offering to close the freezer door for me as I was backing away "Oh, I've got it," I said for the 9001th time. That was before I saw her son. Neither of us said anything after. Was the kid looking at me in horror, swearing to himself that he'd never be caught dead grocery shopping in a chair? Flashback, 1999: I would have said that exact thing to myself.

I've certainly grown in the last half of my life, as I obviously don't think that now, and for that I am thankful. But it makes me wonder why all these thoughts came into my head so quickly. Why my memories of these things are so vivid, while memories most people treasure, like summer camp are harder to bring to the surface. Is this a shared experience among people who were born with their disability? Because I thought only people who had serious trauma have flashbacks...

Acceptance

My stepfather is turning 60 and my brother is turning 30 five days apart. My stepfather didn't have any children until he was 54 (us) so you should see him doing family stuff. All he wants for his 60th birthday is to go to Las Vegas with his family, me, my brother, his wife, my mom, and my grandma. It's kinda sad he doesn't want his family to come too, but that's another story.

After the debacle where we went to Hawaii in 2010 and all we took was my dilapidated Quickie, every time this idea has been mentioned, all I can say is "my chair, my chair, my chair..." Having traveled twice independently with a powerchair (all the other times were with a manual), most recently 5 weeks ago, I know the drill and can do this confidently.

I'm happy to report that my parents are ok with this; that they've thought through some of the logistics and recognize the importance of my independence. They understand the utter frustration I felt in Hawaii, and care that I can enjoy myself as much as possible.

My mobility has declined over the past 4 years, and I feel like my ability to walk was somewhat subconsciously tied to my independence. At least it was in my head... I'm concerned that my mother is upset with me on some level. She put a lot of time, energy, and money into something I'm letting slip away. Am I leading the life she wanted for me? I think so, but it's different then either of us could have imagined.

We sat at dinner and my parents (who have been to Las Vegas, I haven't) told me of all the places I would need my chair. It sounds like I'll be sitting all day. I can't just use it to get somewhere and then dump it in the corner -- it was $13,000 afterall. And they're ok with that, which leaves me kind of shocked. Oddly I am not ok with it. I am thinking of the physical pain this causes, the exacerbation of my spasticity. But I'll figure something out. My brother doesn't take his ritilan when he goes on vacations, and he's always had fun with this stuff. He can drive my chair.

Over the years my chair has become a part of me, an extension of my independence, and after all I did to actively fight it, I guess I'm still surprisingly having to revaluate my identity to include it. Why else would I think this was so odd?

I'm a wheelchair user, and that's ok.

A Positive Observation

[Image description: The chicken boxty I had for dinner. Boxty is a very delicious Irish dish.]

My parents stopped to take me to dinner the other day on their way home from visiting my grandma, as I'm not at all out of the way. We decided to go someplace new to them, someplace I hadn't been in about 4 or 5 years. Right as we pulled into one of the accessible spots a minivan pulled into the other one. I watched as an older lady and a PA got a manual wheelchair out of the trunk. For those of you who don't know, I check out chairs like some people check out cars. It was a very crappy chair, which was obviously custom (a shame... If you're going to go through insurance approval and all...) as the frame was blue, and it was an Invacare. I didn't notice if it was a foldable chair or a rigid frame as I was concentrating on getting out of the car, but as it had swing away foot rests and a sling back I imagine it was foldable. I didn't get a chance to see the wheelchair user.

We went into the restaurant and got seated, and they came in right after and got seated diagonal from us. I checked out the woman in the chair, who must have been in her 40s. "Why isn't she in a powerchair," I thought? I'm not sure if she has CP or if she had a TBI or a stroke when she was too old to have it classified as CP, (when babies have strokes they call it CP) but I imagine she has CP, and regardless would be perfectly capable of handling a joystick.

As soon as the three of them got settled, the woman turned to the person who seated them, and asked him what his name is. "My name is Wendy, she said in perfectly understandable "CP speech," if you know what I mean. "I'm very happy you're here." To which he replied, "I'm very happy you're here."

She repeated this exchange as soon as the waitress showed up, even before she had a chance to say anything, and again when another restaurant staff showed up.

Hmmm... I thought. What a clever idea. I also noticed out of the corner of my eye that her PA had put on a bib. I'm sure being in your 40s and wearing a bib, coupled with the fact that you're being pushed by a PA wearing scrubs (ICK! if I had a PA I'd make them wear jeans to go out to eat) often if not always puts her in a situation where she's ignored. Where people look at the people she's with as if she's not even there and ask them what she would like to eat. Although my CP is significant enough that there's no way I'd ever pass, I seldom find myself in this situation, and found it to be a great way to break down a frustrating communication barrier... which leaves me wondering if any of you use this strategy or a similar one? Just curious...

A Quote

Found on the main page of the website of a therapeutic riding place somewhere in the state of Maryland. I won't out them. Also found in at least one of their newsletters (I only looked at one).

Although many afflictions cannot be “cured”, nearly anyone may be healed.

I'm speechless...