It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Tuesday, July 26, 2011

Disbelief! (a Repost)

I was going through some old posts, and my linked within widget lead me to the below posted college entrance essay, originally written in 2003. I wrote it for the MC Scholars program (I didn't get in). You had to write the book jacket from your memoir you just finished in 2025, when I am 40. I thought I'd repost in honor of the fact that for the second time in just over a month I participated in the beginning stages of writing disability related federal legislation that will affect the lives of millions of people. Today was related to the Caring Across Generations campaign, in June it was the latest version of the CCA. At the time I never in my wildest dreams thought that would really happen. The original post has a bit more on how my life is really turning out vs what this says would happen.

Triumphs Over Struggles: The Ups and Downs of Life with Cerebral Palsy is an ordinary book about an ordinary person who fought for ordinary things. It is the autobiography of Cheryl *censored*, a wife, mother, and social worker at Gillette Children’s Specialty Healthcare, a hospital that services pediatric orthopedic and brain disorders exclusively. She has spent her whole life fighting. Although most people associate segregation with the 1950’s and 60’s, the 1980’s and 90’s were filled with just as many battles for Cheryl. It was the age of the Americans With Disabilities Act, but Cheryl was still continuously denied access to life. She fought for both the right to attend a local preschool as well as her neighborhood elementary school, which contained 32 steps down to the playground. An avid horseback rider, Cheryl was also almost refused the right to attend a local horseback riding day camp.

Besides all of the adversity Cheryl has faced in her life she has been able to triumph over it all. Cheryl endured eight reconstructive operations on her legs during her childhood which resulted in her having to relearn how to walk four times. Through all of this, Cheryl, whose parents were told would never amount to anything, remained an honor student in school. She attained her associates degree in psychology through Montgomery College’s Scholars Program and then finished her bachelor’s degree through Hofstra University’s Program for the Higher Education of the Disabled (P.H.E.D). Cheryl later received a master’s degree in social work at The University of California, Berkeley.

Through her advocacy for people with disabilities, Cheryl has made a significant impact on the education of mainstreamed disabled students. Cheryl started lobbying local disabled rights organizations in college. Since then she has been interviewed by many media giants, such as NBC’s Today Show, Good Morning America, and The New York Times. The Cheryl *Censored* Education Act is a Federal education bill aimed at setting a national standard for the education of students like her. It is currently being reviewed by the House Education Committee.

Cheryl lives in the suburbs of St. Paul, MN, with her husband Matt of twelve years and three adopted special needs children, April, May, and June, ages 9, 8, and 6, whom she has had since infancy. She has two dogs, Eloise, and Puck; a cat, Mizzy; and a horse, Apple Blossom. Cheryl and Apple Blossom are in training for the 2028 summer Paralympic Games in Rome, Italy. They have won many ribbons for dressage in both local and national disabled riding shows. When not in training, working in the hospital, or lobbying Congress, Cheryl enjoys shopping, running 5ks for charity, and working as her synagogue's high school youth group advisor.

Friday, July 22, 2011

I've Finished March!

...and half of April! Back in May I told you I'd be back posting, and I'm finally half way into April, which will post directly to the 2nd page, as some of my March posts have. Posts from March 13, 14, 19, 23, & 29 all actually posted in the last 3 weeks, and are on the 2nd and 3rd pages. July's posts also did not go up on the date shown. Some of the earlier ones actually posted after later ones (July also isn't done). So come take a look and see what you missed!

Wednesday, July 20, 2011

You Know You Have CP When...

I've decided to follow in Emma's footsteps, or treadmarks more accurately...

I got a new powerchair almost 3 months ago. I know, I know I have to back post the whole saga of how this came to be. It's rather comical. My new chair looks like this picture but not exactly. It is a Quantum Q6 Edge, just like the picture, but as most of you know everything is super customized.

Over the past 3 days there have been almost 2 dozen emails going back and forth between a Pride employee (they make the chair), my WHEELCHAIR dealer, the repair guy, their purchaser, my PT, and now a friend and my Dr, because I need some outside advice, about A JOYSTICK MOUNT. I know what you're thinking and it is totally ridiculous.

Tonight, like every Wednesday night I went to On Our Own and when it was my turn to speak during the support group I started out with
I had PT at 3:30 right before I came here, and there's all this drama with my dealer
Then I realized, I went OMG in my head, what that sounded like and very clearly changed the end of my sentence to
about my joystick mount for my chair. And there were so many emails she made me miss my bus and I had to call a cab, and I still got there on time but...
Humorous isn't it? My life is never dull.

Tuesday, July 19, 2011

You Know You're a Life Long ADAPTer When...

A quick one this time...

So I get off the elevator for my PT appt and one of the people who work at the desk, he's the scheduler person, sees me walking towards there to sign in and says
Uh oh. Here comes trouble...
To which I say
You have no idea how much trouble I am. I protest the government. My friends handcuff themselves to the White House fence... and I stayed around the corner :( because my parents are stupid and will un-cosign my lease if I'm not careful :( ...
What are we protesting? Medicaid reform. Or rather stupid Medicaid reform. We're the anti-block grant brigade.

He seems like a cool guy, although I've only known him 4 weeks. I wonder how he picked up the vibe?

Sunday, July 17, 2011

Quotes from PT: You Know You're a Life Long ADAPTer When...

Haven't had one of these in a LONG time!

So I started PT, a recommendation I got through 2 ADAPTers, so I like to wear my more interesting shirts to keep her more entertained. Like my "shiny things distract me" shirt, where a pair of hand cuffs are portrayed as bling. That's one of my 3 favs.

Recently I wore another one of my favs, it has our logo really big, and then below it it has a quote:
A good friend will come and bail you out of jail... but a true friend will be sitting next to you saying, DAMN... THAT WAS FUN!
It got a chuckle. A bit into my time another PT looks at me and says he's trying to read my shirt. I smooth it out so he can. Then he says, "I would ask if you've ever been bailed out of jail, but I think I'll leave that alone." To which I respond without missing a beat, "You're not allowed to bail out. It's against the rules. You have to wait."

A while later my PT is trying to get some measurements of my ROM and in order to do that on one side she has to climb up on the big mat/table I'm on, between me and an older gentleman. She looks at him and says, "Don't worry, I won't bite, if you behave." The man jokingly goes "If I behave... those are the key words. Has [his PT] been telling you stories about me?"

To which I look at all 3 of them and say, "That's no fun. Who wants to behave? Behaving is boring. My favorite shirt (the 3rd of the 3) says 'well behaved women rarely make history'"

Saturday, July 16, 2011

Next White House Disability Call

In order to help keep you more informed, we are hosting monthly calls to update you on various disability issues as well as to introduce you to persons who work on disability issues in the Federal government.

This call is open to everyone, and we strongly urge and ask that you distribute this email broadly to your networks and listservs so that everyone has the opportunity to learn this valuable information.

If you received this email as a forward but would like to be added to the White House Disability Group email distribution list, please visit our website at and fill out the contact us form in the disabilities section or you can email us at and provide your full name, city, state, and organization.

The next call will take place on Wednesday, July 27 at 1:00 PM Eastern.

The call will feature information on technology, Section 508 of the Rehab Act, independent agencies, emergency preparedness, employment, budgetary issues and other topics.
I would encourage you to call in about five minutes early due to the large volume of callers.
The conference call information is below.

Dial in for listeners: (866) 298-7926
Title: White House Disability Call (use instead of code)
Date of Call: 07/27/2011
Start Time: 1:00 PM Eastern (dial in 5 minutes early)

This call is off the record and not for press purposes.

For live captioning, at the start time of the event, please login by clicking on the link below. Please be respectful and only use this feature if you are deaf or hard of hearing.

Again, please distribute widely.

Wednesday, July 13, 2011


Yesterday I went to the Caring Across Generations Washington DC Care Congress. It's all about getting more rights for domestic workers, including PCAs. I wouldn't consider myself a labor advocate, but ADAPT was a big sponsor, so they wanted a showing. Initially I felt guilted into going (I have standing Tuesday afternoon plans), but I am so glad I went.

On the Caring Across Generations site you can watch the morning portion of the Care Congress (Warning though, I think it's four hours), see all the religious, labor, elderly, and disabled activist groups that sponsored (there are tons), listen to personal stories, and look up where/when your local care congress will be held over the next 13 months.

To give you a little background on what it took for me to get there, up until my 20s I had panic attacks in Target. My directional sense is horrible, I still cannot ever seem to find the front of the store, but now that I'm a chair user the anxiety has dissipated. I'm not wearing myself out like I was. Nor do I seem to care when I get out of there.

I started off my day from my parents' house, being that they live an hour closer then I do, and hopped on the bus to the metro. Turns out the elevator was out at the stop, so I hopped on another bus to the next stop (making me late, but so what), rode the metro where I needed to go, got off, rolled half a block down the correct street, noted that the numbers were going down, not up, turned around, and found the hotel without any trouble.

I couldn't help but beam. That was something I was never completely certain I'd be able to do, and I didn't even bat an eye (I think that's the expression) when I did it. It was a good start to a very long and tiring 19hr day, as I hadn't slept a full night in 5 days at that point.

It was more then nice to see and relax with some super awesome activist crips and labor activists whom I either just met or hadn't had a chance to see in a couple of months, as they live all over the country. It was also a good chance to be myself and to be viewed as an individual with enormous potential to affect change in the lives of millions of people, even though I don't know nearly as much about labor issues as others there. I felt smart, I felt accomplished, I felt valued, and oddly enough I didn't feel inferior to anyone there. I've had an inferiority complex for YEARS.

After giving it some serious thought before I made a comittment to go, it turns out I also didn't give a crap that I ditched my shrink appointment to go. I didn't need to go. I needed to be there. I needed to find the hotel alone without having a panic attack, to navigate both me and a friend through the metro to a resturant I'd never been to before, and to have social interaction beyond the walls of the local nuthouse (where OOO uses donated space). So I texted her at about 10pm. Old habits die hard. I told her I felt [a word I refuse to use in relation to myself], for lack of the ability to find a more appropriate word at the time. I had more fun Tuesday night then I can remember having possibly ever, and later came up with those words that had alluded me at the time.

I felt HAPPY. I felt CONTENT.

"Life is what happens when you're not at your shrink." True that!

I don't know if I've ever felt content in my life. I don't think I've felt happy in 3 years (well, maybe at National Actions). I can't remember when I didn't feel inferior. I mean, I grew up a cripple. I didn't have any happy and content crip role models growing up. I'd never met a confident, content wheelchair user until 3 years ago. I knew it was possible, but man did I have some roadblocks.

I've known for years that I needed more then just medication and therapy to keep me stable and functional, but I didn't have have the resourses to access what I needed. This dramatic development didn't happen on it's own in issolation. So I'd love to keep going, but this post is long, and I already talked about that a little. Maybe there'll be more tomorrow.

Monday, July 11, 2011

On Rolling In the Street: the Saga

Yet another horsey post. You're just going to have to put up with them, I can't help it! Lately I've been thinking about horses more then I think about botox, which is really hard to do, because when I think about Bentley I think about botox and how we can change it up so I can "get back in the saddle" again (I've been riding bareback) without feeling the need to cry. I wish I'd actually paid attention to "you have to stretch your adductors or you won't be able to ride a horse." They actually weren't kidding! But enough with the tangents...

Therapy Doc wrote a post yesterday that was very loosely about horses (and posted pictures like the one to the right that made me go OOOOO PONIES! and squeal a bit in my head, like I used to do out loud when I was 5) and a bit less loosely about riding her bike on the shoulder of a busy road.

Riding in the street and ponies: 2 things that are very closely related in my life. If I have the choice, of course I roll places on the sidewalk, but sometimes you are just completely stuck. Some scenarios: Say you get to the end of a block and a curb cut is either completely missing or being torn up by a construction crew. The one on the other side is fine. What do you do? Go home or roll back half a block to a driveway and then dash as fast as you can?

Snow is the worst because people tend to shovel snow into curb cuts and the amount of snaking back and forth between street and sidewalk is maddening. My mom lives in what could by some be considered a remote area, but really it touches one of the biggest cities in the state. So it's a little woodsy. I have no sympathy for you mom. I live in a more urban area compared to her, even though I'm not in the city. She once commented to me about how much easier it must be for me in the snow. I said "You have no idea. You have a car! People don't shovel sidewalks and bus stops!" The aftermath of snomagedden had me constantly praying for my life. The bus stop outside my building always gets cleared ASAP but when I got somewhere I'd discover their bus stop had 5ft of snow on it and so the bus couldn't pick me up to go home.

Some information: Paratransit will only drop you off within 0.75mi of "fixed route transit." That means a bus/light rail/subway/metro stop. It was designed to make accessible what is available to the able bodied and less disabled public. If somewhere isn't reasonably accessible to them (0.76mi, they're strict) paratransit won't go there.

Which brings me back to ponies. Ponies don't generally live close to bus routes. Can you imagine a horse trying to catch a bus? I was thinking of riding at ROSES but they're way out of range. Found this other place, called up twice and said "Can you tell me if you go to this address?" Twice I was told yes. But then I tried to book a ride. A no go. A google maps investigation revealed that they are 0.9mi from the closest bus stop. So I looked into getting a PA. He moved after a few weeks, which is just as well, because he had a thing for me and it was awkward. Must do a back post about that.

In the few weeks he was around, I stared at bus stops and buildings along the road. One day I spoke with a friend, a wheelchair user who likes to describe herself as being the size of an 8yo. "I think I found a place," I said, "but it is still 0.3mi up the road." I figured car drivers have a harder time seeing her, and if she would do it...

"You can't roll 0.3mi in your new chair?" was the response.

"Well there's no sidewalk, but the shoulder is really wide and the road isn't all that busy."

I would never roll in a lane. I'm nuts, but I'm not suicidal. I also would never do this in the dark, but this was May, or would never get dropped off at the closest place they would take me (0.1mi closer) because it is across the street, and I would never cross traffic in the middle of the road. This place is on the same side of the street, and it's actually next door. It borders on their hayfield. ARGH! They refuse to take me next door because although their property is well within limits, their driveway isn't!

"So what's the problem?" she asked.

"[I listed some people] will freak out."

"Well don't tell them."

Except how are the people at the barn not going to find out? They did freak out. But what would YOU do? Look for a new PA to pay $3o to drive you round trip or pay paratransit $3.70. You know what I'd do... We're trying to figure out how to get some sort of bubble placed around the place since their property is within limits. If it wasn't I'd let it go.

In the meantime I was convincing drivers to drop me where I was really going instead of next door, explaining the situation. Most of them were cool and understood to keep it on the down low. Until the last week of June when someone thought she was being helpful and called the address change into her supervisor. I'm lucky they didn't kick me off, but they're watching me, I'm on their radar.

So for now my trainer is picking me up from next door, but I'm still OK with rolling down the street. It's not rush hour, it's not busy, it's broad daylight, and the choice was pay a PA or get half hr massages, so I won't feel the need to cry [see 1st paragraph]. What would YOU do?

Sunday, July 10, 2011

Need Advice From Female Wheelchair Users: To Switch or Not To Switch?

Back in 2006 I did a 10pg research paper on physical and sexual abuse of women with disabilities. I'll try to post some references tomorrow. While what I read didn't surprise me, it sure did scare me. There were multiple categories I focused on such as spousal/PA abuse, abuse by parents/relatives, and what scared me the most, although I am pretty mobile and this is unlikely to happen to me, is the possibility of abuse by medical professionals. One or two articles I read talked about women who reported being refused access to their mobility aids until after they were taken advantage of.

When I aged out of my pediatrician, I went 5 years without having a physical, which scared me. I've heard of people who caught serious medical conditions before they were symptomatic, just from a routine well check up, and if I'm going to have a serious medical condition, that's how early I want to find it. I wasn't so worried about abuse as I was about some Dr being annoyed by me. I have inconvenient spasticity issues for some exams, if you catch my drift, and I was worried that if things took more time they might not be so receptive to having me as a patient. I didn't want to just pick someone out of my insurance book and go in blind.

Then one day I met 2 married wheelchair users, and some time later in the middle of a conversation I realized hey, I should go to their doctor. At the time her office was less then 2 miles from where I lived, now it's across the street. Being rolling distance, now walking distance, is definitely a perk.

In the little over 2 years since I got that referral I've been over there 3 times. I don't have much use for a primary care doc other then relieving my constant anxiety that I have some kind of cancer and I have no idea. The 1st time she was OK, and it was a big relief that she was, of course NOT phased by my spasticity. It was a very trusted recommendation.

The second time I went I thought maybe I had strep, and that's when I realized she must double or triple book. I waited a ridiculously long time even though I had called ahead, and then saw her for less then 5mins. Turns out it was just a cold.

When I went for my second physical I also waited way over an hour for an appt scheduled in advance, and she definitely rushed that appointment. By the time I finally saw her I was cutting into her lunch hour.

Back in March I thought I had a serious reaction to one of my meds (I didn't) and my psychiatrist never got back to me even though I emailed him pictures and called him to let him know I emailed him pictures (so I ditched him, it wasn't the 1st thing he did, it was the last straw). I was trying to avoid the ER. When I couldn't make the one time I was given, her office staff never got back to me with an alternative. I went to the ER.

I read recently in Urbanite Magazine that a very local community hospital is doing some revamping in preparation for the implementation of the ACA. If you don't want to read the whole article, basically in a few years if practices change certain things in regards to the treatment of MediCARE patients the government will give them a bonus. They're really doing an aggressive campaign and since I've been typing this post I've heard their radio commercial about their brand new satellite primary care offices twice.

I'm by the main hospital once a week. And by by I mean across their parking lot. The only thing that separates their parking lot from the other parking lot is a parking gate. So besides across the street, this is the most convenient you can get. I should also mention that during the warm months I roll over there.

My current primary care doc takes my insurance but I'm pretty sure not mediCAID, and as I recently qualified for the buy-in and it will soon be my secondary, I'm evaluating who I see. It's part of the reason I ditched my psychiatrist. While I'm not planning on a physical for 9 mos, their incessant radio commercials have me thinking. If they don't take mediCAID and they're so closely linked to a hospital, that's pretty shitty. Their primary care/family physician website says that they accept most insurance plans including mediCARE.

I may call/email over their and check, and I also plan to check and see if they have adjustable height exam tables. My current doc does not, and I would switch just for that. It conveys a certain philosophy of inclusiveness. Besides that though, I would be picking someone blind without anybody else's experience to go off of. That anxiety about my spasticity making a doctor uncomfortable is creeping up again. I don't need to deal with someone like that. On the other hand, although I am pretty comfortable having more intimate exams with the doctor I have, I'm not comfortable with the fact that I feel my time is not respected. The article says that the hospital is in the process of switching their physicians to a salary from the current fee for service, so that hopefully won't be an issue.

If you've managed to get this far, what would YOU do? I'm really interested in opinions. And thanks Jay for the picture.

Friday, July 8, 2011

Frustrated, Or, It's My Blog and I Can Rant if I Want to

I forced myself to go to bed early (10pm) last night by taking a melatonin so that I would get up early before work and fold some clean clothes. Yeah right. I've been online for the last 2hrs or so, and I've been in a bad mood. I woke up that way. My new position is an adjustment, but it's not even that. I'll definitely grow a skill set from this job. I should view it as a challenge, but this morning all I can view it as is a drag, and it's not even the job that's dragging me down.

My problem is an all to common problem for those of us who don't drive. My problem is PARATRANSIT

My problem is that I've recently expanded my world greatly beyond the <3mi I usually try to stick to, and while it's GREAT for my depression that I'm out and about and interacting with more people, it's almost not even worth it to me. Notice I said almost

Because I can't drive:
  • my 1hr shrink appointments, 15mins away, take at minimum 3hrs, once 3hrs 45min
  • My first shift at work last week, a 30min drive, was just 5hrs, but took up 8+hrs of my Friday
  • My half hour horseback riding lessons, about 35mins away, take up at minimum 3.5hrs, but in the half dozen times I've taken paratransit out there, they once dropped me off 50mins after the time I said I need to be there (always 30mins early, I'm not stupid), took forever to get me home, and the whole ordeal lasted probably 4.5 or 5hrs. I'm lucky that the guy who dropped me off had his dinner break in between, was actually assigned to take me home, and decided he'd just sit their and wait for me. Otherwise, I can't imagine.
  • The only place I can get to in a reasonable amount of time is my new psychiatrist. A 40min roll in the warm months will only take me 60mins with paratransit in the cold months. BTW, her office is about 2.5mi away.
So forget paratransit altogether.
  • A trip to the grocery store, a <5min drive, is a 20min roll each way
  • A trip to my PT/Massage therapist (2 different people, same location) is a 15min drive, but takes 2 buses and I try to be at the 1st bus stop (directly outside my door, great apartment score!) 60 or 45mins (cuttin it close) early
  • That 2.5mi, 40min roll to my psychiatrist mentioned above, I'm sure that doesn't take more than 10mins in a car.
I know I'm not the first, and certainly not the last, but I've still had it up to here! [picture my left hand way above my head]

PS. Unfortunately I don't seem to qualify for state run programs that help cover the cost of PA services (the state does pay for PAs to drive people places) because I'm not at risk of institutional placement if they don't.

Thursday, July 7, 2011

On Mindfulness: How to Exercise with Spastic Legs, Post 1 of Many

I think I'm going to start a series, "How to Exercise with Spastic Legs", but I don't own a camera, it requires pictures of me, and even if I did own a camera I can't take pictures of myself. People I know IRL read this blog. Anyone volunteer?

Today I went to the gym for the first time in so long I don't want to mention it. What precipitated this unusual event? I think my dosage of one of my meds is now too high and I'm a bit worried that it'll take me in a direction I don't want to go. I've been telling my shrink for 4 years that if I just got myself back on a horse (and found a massage therapist and an acupuncturist, and went to the gym) I could take myself off them. Then I realized that's probably dangerous, but feeling like I need to lower my dosage wasn't unexpected.

horse ✓
massages ✓
gym ✓
acupuncturist, not so much

Anyway, horseback riding precipitated my general desire to get back into shape even if it didn't get me physically to the gym.

The point of this post though isn't that I went to the gym for about 50 minutes today, but that I went in there with an entirely different mindset then I ever have in the 10 years I've been gyming on and off. I started physical therapy 2 weeks ago for the first time in about 4 years I think, a referral I got from a close friend (so why did I find myself in a gym? My goal is to exercise 30-60mins 7 days a week, as opposed to the 2-3hrs 2x a week I used to do) and I think it's this PT that used to tell my friend to "respect the pain." I used to take long gym breaks and then go back to my exact same workout I was doing before, thinking that lower weight or lower speeds would be ok. Except I always ended up pulling muscles in my legs several gym sessions in a row.

This time I decided to "respect the pain," and not do anything potentially dangerous. I stayed off the weights. I only biked for 5mins, I stayed on the tredmill for just 5mins, backwards (a GREAT exercise that works your abs, adductors, glutes, hamstrings, gastrocs, upper arm muscles, and every muscle in your back) and did a modified floor routine: 75 crunches, 20 "girl" push ups, 15 hip bridges, and 30 of my shoulder stretches.

And to my surprise I ended up practicing mindfulness. Mindfulness has been big in psychotherapy for at least the last decade. It's what the picture (right, isn't it odd that I found a picture with a horse) says it is: "Being still, becoming aware, living fully in the present moment." Mindfulness is big in eating disorder and anxiety treatment, among other things, although it's not something I've ever delved into in therapy, despite my anxiety issues. Either it isn't my therapist's "thing," or she caught on rightfully that it isn't my thing. I shy away from anything new agey.

If you want to learn about my particular subset of mindfulness, Body Sense, or Embodied Self-Awareness, check out this post from Psychology Today. Today when my abs felt the tinyist bit sore (a 0.5 on a pain scale) I stopped what I was doing at the end of that set, put both hands on my stomach, and took 10 deep breaths in and out, counting them and focusing on what my breath felt like. Then I kept going.

I'm focusing intensely on my adductors and my abs, so after my hip bridges, I laid flat on my back on the floor (I was already down there, so why not), my body aligned completely straight with my legs hip width apart, put my hands on my hip bones, which I wasn't even able to feel until I was 13, and concentrated on how my back felt against the wood floor and the 0.5 degree of pain in my right adductor, and I just breathed. I may start taking baclofen before my workouts. It's always been the tightest muscle in my entire body and if just that little bit of a stretch causes any degree of discomfort I don't want to risk going further and doing damage.

Mindfulness was an unexpected change, and something I hope to be able to continue, although people sometimes get concerned if you're lying on the floor at the gym. As someone with spastic CP, I typically spend all day "scrunched up." I'm sitting in my powerchair right now hunched over slightly, I tend to end up sleeping with my legs crossed, I stand crooked with my legs bent at the knees. For the last half of my life since my hip flexor surgery and my subsequent back issues I've tried to spend a few minutes at night in bed laying on my stomach. I figure your body wasn't designed to be scrunched all day long and it's the least I can do for myself.

But this was different, besides the fact that I was able to fight the urge to cross my ankles. This centered me, and I owe it all to Bentley (the horse). It's something I'd recommend to all the spastics out there, even if you can't completely unscruntch yourself. Start a little at a time :)

Monday, July 4, 2011

"Freedom is the oxygen of the soul" ~Moshe Dayan

I picked up my apartment building's July newsletter and discovered they had another column of Freedom Quotes this year as well. The quote above inspired this repost, originally from May 2010.

On Wednesday at OOO someone mentioned that they had seen this documentary on public television where someone interviewed people of various backgrounds about their personal definitions of freedom. I don't remember if they were famous people or not, although I imagine they weren't, or if they were from different countries or not, although I imagine they were. Anyone see this thing? All I remember from Wednesday night (I'm depressed, remember) is that this documentary made quite an impression on my friend, and she in turn made quite an impression on me. Nevermind I can't remember a single word she said.

I knew instantly what my definition of freedom is, although I did not bring it up because I would have gone off on a thing. Quite frankly, I can't remember a word I said either... Anyway, I'm choosing to share it here.

Freedom is...
The wind blowing through my hair.
[FYI this picture, left, is from this past June in Chicago at AYS, not from DC, but see, wind in my hair :D]

Freedom is the ability to get into my chair and
GO! Whenever and wherever I feel like. Freedom is the ability to turn up my ipod so loud I'm going to lose hearing (an acceptable consequence) and the ability to sing at the top of my lungs while I'm whipping top speed down the sidewalk towards my destination. I've had my Jazzy for 7 years and I have never and will never lose that joy that comes with passing other people by, and the joy of how good it feels to create your own wind on a gorgeous spring day (we've had a lot of those lately).

I was going to write a Thankful Thursday a few weeks ago, because it was on a Thursday during that time where I was still barely "functionally non-functional" that I woke up super early and anxious and decided that I just wasn't going to school, because I just didn't want to. It took 2.5hrs and 3.5 episodes of Grey's Anatomy for me to be able to drum up enough sheer willpower to drag my butt out of bed, put some clothes on, and still get to class in plenty of time.

I remember I rolled just outside my building (I live about 1mi from school, or a 12-15min roll) and stopped to detangle my headphones and set myself up, as I always do, either just outside or in the lobby, flipped down my sunglasses, and TOOK OFF down the driveway. I'm not even sure I was all the way down the driveway when I smiled and thought
"Thank g-d for ipods. And thank g-d for old Grey's Anatomy DVDs (THAT was really what it took to be able to get to the point where I could reason myself out of bed). And thank g-d for my Jazzy, my freedom, my ability to get around."
I often think about -- especially on bright and sunny days -- the fact that in Maryland, Medicaid will not pay for a powerchair if you are in a nursing facility. 'Cause, you know, where are you going? If you're leaving on an HCBS waiver, they have this thing about not delivering it to you until the moment you're discharged. G-d forbid something goes awry and you're still there, can't have that.

I think about this because there are a
ridiculous amount of nursing facilities surrounding me, one as close as 2 blocks, and I think about how every time I rolled into one, people would eye my chair and want to know how I got such a beautiful thing. Doesn't matter how much dirt is caked on, or how many scratches and dents there are (it's well worn). When I said I have private insurance the whole group would look forlorn.

So lately I think about this everyday, because everyday lately I've spent several hours willing myself out of bed, but everyday, eventually, I put on my headphones, flip down my sunglasses, and roll down the sidewalk to somewhere. I think about the freedom I have to roll down the street, and about how great it feels to have the wind blow through my hair, and I long for a time when people don't have to fight so hard to have these feelings too.

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