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.

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...

6 Questions on Passion

I've wished in the last year that I'd taken some time to be reflective / introspective about my life and after spotting this meme on Jay's blog I decided to take the opportunity.

What puts a smile on your face?

Following what makes you truly happy is a wonderful way to figuring out what you were put on Earth for. Think about something that you do or that perhaps you used to do that brings you total happiness!

Furry creatures like dogs, cats and horses, NOT mice or squrils or things like that. 18 months ago I was visiting my brother all the way in California and one of his cats curled up on the right side pillow and another curled up behind my bent knees. I tend to toss back and forth and sleep diagional so it was hard to get a deep sleep while trying not to disturb them, but they put me completely at peace. It's also hard to be at a barn with all the dogs and ponies without being as mobile (and short) as I was when I was a tween. It's hard for me to bend over to pet dogs, and it bothers me that over the years I made a consious decision to make my balance worse. I've been longing to bury my head in my ponies neck, but I've been too afraid s/he'll move and I'll fall over. I wish I didn't always feel like I have to keep my distance these days.

What do you find easy?

What we find easy for us to do, will be related to what we are passionate about. It’s very hard to hate something that is very easy for us!

Information and referal. I always pay attention when people mention resources and love, love, LOVE when I can hook someone up with agencies/services that solve their problems and improve their lives.

What sparks your creativity?

Think about something in your life where you seem to always expand its horizon, always coming up with new, fun, and exciting ideas relating to that subject. Whatever makes you creative is something that you are passionate about.

I haven't been super creative in years, since the last time I had an extended hypomanic episode :( It's sad because creativity is one of the things I value the most.

What do you like to talk about?

Most of the time, we aren’t aware of this. A good way to figure this out properly, is to ask your friends. Ask them what they believe you like to talk about the most, what topic makes your eyes brighten up, and changes your entire behaviour.

I like to complain about the injustuces in my world. The lack of housing vouchers, people like nursing facility social workers who purposely hide community resources, lack of knoweldge of affordable health care, for example. When I'm at On Our Own I frequently talk about depression, whether it's the things I'm not doing like dishes, or the things I am doing, like horseback riding and personal trainer appointments, or the rush I get from activism.

What makes you unafraid of failure?

When you do what you are passionate about, you have total confidence in your abilities. This makes you not worry about failing, because in your mind, how can you fail when you do what you love?

I'm always affraid of failing because I've failed so much in my life that I mostly expect to fail. Sometimes though I purposely go into something with very low expectations, like bowling, or horseback riding. I can't fail when I have realistic expectations.

What would you regret not having tried?

If you were at the end of your life, what would you regret not having pursued? What would you have liked to do, that you didn’t get a chance to?

I deeply regret not going back to school and not having been able to finish my degree when I was so close to being done. I wish I wasn't taking an extended break.

I'm a Work in Progress: Work, School, & All That Jazz

I work for a non-profit organization that has 5 different locations. I currently work 2 days at 1 location and I'm on call a third evening a week at another which is much closer to my house. Between all of our locations we're open 6 days a week, but the most any one center is open is 4 days. I heard through the rumor mill that my location would be getting a grant to expand and offer more services, and we would be open more days. Yesterday it was confirmed by our executive director that my location would be open 7 days a week, meaning that current employees should be getting more hours and maybe some on call employees from other centers would get permanent hours. Although he wouldn't say anything specific other then that the expansion will begin in February.

This is really exciting news as another shift means a 50% pay increase which will allow me to be more financially independent, feel more like an adult. They're also the perfect hours for me. I don't have to be at work until 1pm, don't have to leave until 11:45am (to get somewhere 30mins away, paratransit, ARGH!), so I have my alarm set for 10am. It gives me an "excuse" for my chronic fatigue to not be perceived as laziness. "I'm never up that early, I work off hours."

I've also for the last 7.5 years wondered how I'm supposed to work enough to be completely financially independent and still have time to do the things that will keep me mentally and physically able to work. Right now I work Fri/Sat. If I can manage to work Thurs/Fri/Sat or Thurs/Fri/Sat/Sun this would allow me three weekdays for horseback riding, massage appointments, shrink appointments, and personal trainer time AND allow me to pay for them. I also have some meetings related to long term care reform that are conveniently held on my off days. Working weekend afternoon/evenings -- MY DREAM JOB!

I wouldn't mind mornings if they weren't so early in the day!

The problem? I want to work & be more financially sufficient but I also want to go back to school and finish my degree. I can't imagine fitting horseback riding, massage appointments, shrink appointments, personal trainer time AND working 24-35hrs/week, plus keeping up with my advocacy work, even if I take 1 class. I can't see fitting in a class with my current schedule without it being a once a week class. Maybe I could fit in a Mon/Wednes late afternoon class or a Tues/Thurs morning class? But when would I have time to do my homework? Would I have to wake up at 7:30am everyday to study for 2 or 3hrs? Would I have to go to the gym from 8-9pm? Would I collapse from exhaustion from constantly running around and getting a 1hr sleep deficit everyday? Because then I physically wouldn't be able to read, study. So would I have to quit working when I decide to go back to school? Then how do I pay for my horseback riding lessons, massage appointments, shrink appointments, and personal trainer time -- the supports that will keep me in school?

Such are the dilemas of life...

Star Stickers: A Winning Strategy!

I say this now, ask me in a few months...

Last fall/winter I quit all my meds for 6mos. Don't ask me why. Since then it's been a bit of a struggle. Mid May to mid June was abysmal, but from mid June to mid July I can tell you I took one of my meds 80% of the time. Fantastic for me & even my shrink agrees, although the new psychiatrist wasn't so pleased. The other med I've never restarted. Anyway, it's becoming harder to remember how many pills I've actually taken as I've been increasingly running over them. It's a good thing I built up some reserve over the time I wasn't taking it, but the issue is I can't just look at the sleeve and count them.

Back the very end of June I bought a planner. Now sometimes I buy them and sometimes I don't, because I never use them. When you have executive functioning issues, every shrink will repeatedly tell you to use one, but as far as I was concerned, I'd just sit there and roll my eyes. Not my thing. But the thing is that from June-August my horseback riding lessons were few and far between, and my PT appt times are sporadic. Then there've been the Care Congress, more CAG commitments, a few work trainings, "medicaid cost containment" public hearings, MFP subgroup meetings, frequent conference calls, and a botox appt thrown in the mix. I have a history of knowing and remembering exactly when thing A is and knowing and remembering exactly when thing B is, but not realizing until the last second that they are at the same time, and my trainer was doing me a favor and dragging her kids along with her to the barn. The last thing I wanted to do was double book her! Hence the planner...

My shrink, who at this point has known me 4 years, was practically speechless when I showed this planner to her with things written in it. The fact that there's more and more in there, I mean, you should just see the look on her face!

Back to the meds and not knowing when I've taken them, I think you see the connection between that and a planner and the title of this post. She went out of town and my appointments were 2 weeks apart. One of the first things she asked me was "are you still taking your meds?" I looked at her and said "Eh." "How much," she asked. "I have absolutely no idea," I replied, "this time I didn't start with a full pack. But I'm sure it's less then 80%"

I have in the past had a thing for stickers. In my apt I have unopened packs of pony stickers and "Incredibles" stickers that say things like "Good Job!", "Way to go!", and "You're INCREDIBLE!" The thing is that my planner is on the smaller side, as you can see, and they're all too big. So I said to her last week, "You know those gold star stickers, the ones that come in the packs with the silver ones and whatever? As long as I'm actually using this planner, I might as well go buy those [see right]. I just can't seem to get motivated enough to actually go get them."

That's a really good idea!" she said. Now that look of shock and the sound of utter amazement that an idea such as this would ever come out of my mouth, I don't know if I've ever seen that. "Plus, you're giving yourself a gold star for taking them!" OK, *eye roll*, cheezy!

A few hours ago I finally made it to a store that carries them to buy some. FYI, neither CVS nor Safeway carry them. As I can only remember as far back as Aug 20, that's where they start. The stars were $1.68 for a pack of 715 in 5 colors and the neon dots were $1.88 for a pack of 475 in 4 colors. I couldn't decide what I wanted, so I just bought both. That's over a years worth of stickers for $3.56 +tax

Realistically I don't think they'll motivate me into better compliance then say 85%, but they'll give me a nice picture of things that is nice to have. Everyone is always so concerned about my levels. I'm using 3 colors, pink dots for my mood stabilizer, gold stars for exercising (ok, I'm not gonna lie, they do make me smile!), and green stars for my antidepressent. Note above that there are no green stars :( It's too much of a time sensitive med and I'm just not getting it. This is a very accessible strategy, as it doesn't cost much, and even blind people can feel the stickers different shapes. All I have to do is dig up a paperclip and secure them to the front of my planner.

Like I said though, ask me in a few months if I even have a clue where my sticker packs are. My strategies tend to fizzle. If I don't I'll dig them up and mail the leftovers to you for free.

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.

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?

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.

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 :)

A Picture Says 1000 Words

A picture says 1000 words, doesn't it? I pulled this picture [left] out because, actually, I noticed it on my living room floor and said "I need to show this to so-and-so." It was taken of me and Pro (the horse) back in 1997. I was 12. It is one of my favorite pictures of myself.

A few years ago I came across this picture when I was in a depressive state and brought it to my shrink. I told her I saw it and thought longingly of when I was 12. And then I thought, "What am I talking about? I hated being 12. I didn't have any friends. And who likes being 12 anyway?" But at least I had Friday afternoons to look forward to. At least on Friday afternoons I felt like that. "Why can't I feel like that?"

Since I've started riding again I've also started physical therapy again. And picked up a massage therapist along the way. Riding always hurt, but this was unreal. I've really let myself go over the last 2-3 years. I've never fully regretted this decision, my slow decline in physical mobility was brought on by an increase in independence. I think only wheelchair users can fully understand this.

Except that if someone had put it as simply as "all that sitting on your butt you're doing, and all that laying in bed you're doing because you're keeping yourself depressed [I believe that a person can't make themselves depressed, but by not using strategies you know work, you can most certainly keep yourself depressed] you're shortening your already shortened muscles so much that eventually you'll never be able to ride a horse again," I might have thought differently. I think I caught it just in time. I don't care if I can walk, I'm so over that, but I do care if I can ride a horse.

Someone asked me recently why I'm putting myself through all of this. If I'm in as much pain as I say I'm in why don't I just not go. Because I don't know the last time I felt like this.

I Should Have Been Blogging About Freedom Fridays

In this possibly terminal phase of human existence, democracy and freedom are more than just ideals to be valued--they may be essential to survival ~Norm Chomsky

Please consider donating to the 6th Annual Fun*Run for Disability Rights. It's May 1st at Upper Senate Park in Washington DC, the first day of the spring action. Even if it is just $2, all of Maryland ADAPT will be forever grateful. Your money is tax deductible and is split 50/50 between Maryland and National ADAPT.

What does National ADAPT use the money for? Legal fees, hotel rooms, lunch during national actions, copying, bull horns etc. What does Maryland ADAPT use the money for? Pizza and soda, hotel rooms, lots and lots of stamps (surprisingly in 2011 we do a lot of snail mail). If we get enough $ we can apply for federal 501c3 status. The fee is STEEP!

Thanks in advance!

[If you know me IRL you know I of course have to post a photo of PONIES!]

WHAT A WEEK!

My brother got married on Sun, I had a 3 days worth of work trainings the last week in March, I started my work training program Mon, my 26th birthday was Tues & I practically slept through it, I started horseback riding Thurs, and I am EXHAUSTED! So for lack of the ability to write anything, here's a video from the wedding:

My brother's wife is Japanese, her parents don't speak english, and all of a sudden he walks up to the balcony during the last song and takes over! Jason & Megumi unfortunately only caught the last few seconds as they were taking pictures on the moon bounce...

I Should Have Been Blogging a True Story Tuesday

Click on the picture to see the others

In honor of the fact that I have my 1st horseback riding lesson in 2 days, a horsey story:

When I was 5, almost 6, I had my 1st major surgery. I was in a camouflage body cast, as it was 1991, 1st gulf war era, and I can't remember if I ever mentioned that my brother and I were into playing army with our grandpa, who was a WWII vet. But that's neither here nor there.

This story comes after my surgery, when I did a crazy amount of rehab. 12hrs of PT per week, plus my regular hrs of OT & ST. My adductors (inner thigh muscles) have always been and will always be a major area of concern (I'm trying SO HARD not to cross my legs while I am writing this), so I think it was my main PT, but who knows at this point (I was working with 5) who decided to leave this foamish bolster thing (shown right, but without the chain on the end) that she just wanted me to sit on while I was watching TV. Just so I'd get some kind of passive stretch.

But I would have none of it. They wanted me to do more?!?! If I was a little older at the time I would have said,

"HELL NO! LEAVE ME ALONE AND GET THAT DAMN THING AWAY FROM ME!"

Or something like that. Nevermind my parents pleaded with me and tried to reason with me, telling me that she just wanted me to practice so that when my trainer was back in town and my Dr said I could go riding again, I could go riding again. They tried to convince me that if I didn't sit on the thing I wouldn't be able to get on a pony at all. I was just too smart to fall for that.

In desperation my parents tracked my trainer down and called her at her winter house in Florida. They asked if they could drive over to the barn and borrow my saddle until lessons started up again in the spring. Would she let someone know they were coming by? My grandpa, who became an engineer after his stint in the army and loved to build things, came down from New Jersey and built me a sawhorse. If you don't know what a sawhorse is, they look pretty much like the picture to the left. My saddle was perched on top, and somewhere in my parents' basement there are pictures of me sitting on it in the living room watching TV with a big smile on my face.

While I only vaguely remember this, I do remember the excitement of having my saddle in my house! *Squeal of joy* My parents had decided to surprise me! I also remember the first time I got back to the barn that spring, and before I was allowed to get near a pony my trainer made me prove to her that I would in fact be able to get on, and then made a huge deal out of it!

[OK, just noticed all of my TST posts have to do with surgery. There's something wrong with that]

I Should Have Been Posting An Update on Finding a PA

It has been 3 weeks since there has been an update, and in that time, NOTHING has happened. I still don't have anyone. When I discussed the idea of classified ads with my mom, she thought it was a good idea, but when I told her how much they'd cost (you run them more then once of course) she kind of blew me off, told me she'd get back to me later, and I'm still waiting. I could just do it, I'm 26 years old (practically, 2.5 weeks away!), I don't need mommy's permission to decide if I think it's safe or not, but it's a $$$ thing.

In other news, a guy from my support group has offered to drive me for free. So I guess I can't say nothing happened. I'm inclined to take him up on it, but on the other hand I don't really know him all that well. He's just started coming. Yes, I know if I hire someone from an ad I place I won't know them at all, but that is clearly a business relationship. This, I am not so sure. He says he's not in school at the moment (he's college age), and not working, and bored, but I think he has a thing for me. When I discussed this with one of the group facilitators, whom I have known almost 2 years, he said that he thought he was just being nice, and is bored, and he doesn't think he has a thing for me. I should do what I feel comfortable doing.

It'll certainly save me the classifieds fees, although I won't allow him to drive me for free. It's aprox 40mi round trip and I assume 2.5-3hrs of his time and gas is well over $3/gal

[this picture of me and Cadance the horse is 3 years old, not new]

An Update on Finding a PA

So far, NADA. I live within a mile of 2 different schools, both with equestrian teams. One has a barn on the premises and their coach is on faculty full time, so I sent her an email a week and a half ago. I've heard nothing back. 2 days ago I posted on the other school's equestrian team's facebook group and sent something to their gmail. Nothing, but it has only been 2 days.

[this picture of me and Cadance the horse is 3 years old, not new, FYI]

I'm getting nervous, being that it's almost March. I have options of either going the look for a student that can drive but who doesn't know their way around a horse route (sending 2 more emails, which is free) or putting classified ads in both of the school's papers. That gets pricy. One school charges $24 for the first 60 words and the other charges $10 for the first 30. Being that I had trouble getting it down to 60 (see below) I'd probably just submit a 60 word ad there too, which will cost $19. Unless someone can help me cut it down.

Disabled & looking to hire student to pick me up at *censored* at 1:45, EVERY OTHER THURSDAY, starting April 7, drive me to *censored* Horse Center, *censored city*, help me tack my horse, drive me home, 2/3mi from *censored school*. Through 2011-2012 school year preferred, through end of Sept 2011 minimum. Pays $25 cash EVERY OTHER WEEK. Contact via email *censored*

So what would you do? Emails or classifieds?

I'm Hiring My First PA

To follow up from last years Valentine's Day post I will be starting horseback riding lessons in about 6 weeks I hope! I will be starting a temporary part time job and will be saving most of that $ for horseback riding lessons. I can hopefully stretch the $ out for a year by only going once every other week. The problem, which is not a problem is that paratransit only operates within .75mi of a bus/train line and of course barns are in the country and buses typically don't operate in the country.

I was fortunate enough to find a barn in civilization that has both a typical and therapeutic riding program, but of course it is still 0.9mi from the closest bus stop says google maps, and the paratransit scheduler people say it's 1 street too far. Although I could find the closest possible address and huff it, that just isn't my idea of stress relief. That's stress creation, and riding is supposed to be stress relief. So I'll be paying someone (a student) to drive me there and back. There is a state program that could pay back most of the $, but I've heard there's a waiting list, so I'll be paying out of pocket and looking for someone who'll do it for cheap. I have several options of places to look. I'm rather excited!

Any advice for a first time employer?

Another Round Up

ETA: An old post of mine, an old research paper to be exact, Tiny Tims & Supercrips, was quoted here the other day, although in an effort to change the link to this blog from my old one, it no longer works. I still think it's cool, and almost missed it, except that I was reading The Goldfish.

First, I was cleaning out some very old email and found this:

The email said that this was done with a typewriter and that the artist has CP.

Next, I don't remember emailing this poem to someone, or even having read it 2 years ago, but apparently I did. It was recited at the disability pride parade, and is good.

Third, sorry Joe, you non-blogger you, you're off my blog roll because I've added Georgina Dollface (swapped one LP for another... huh... didn't notice that at first) She commented on this blog once, and I must have clicked on her blog then, but somehow I only just now, after doing so again 10mos later, noticed how great she is. You should blog more Joe.

If you want to take part in an amazing love story (I feel like a voyeur reading this blog) check out To the Other Side of Dreaming. I took the last of my disaboom blogs off of my blog roll when I added this amazing blog yesterday.

Fourth, Attila recently wrote about her collaborative craft studio, which employes disabled adults and caregivers / relatives. They make Christmas ornaments, that are the most gorgeous I have ever seen, and I think stuff for Easter too. If I wasn't Jewish I'd have ordered a bunch already.

Fifth, here's another great post from Therese. I'm sorry if you don't like dark humor, but I do.

Lastly, here's 2 more great stories from Joe Shapiro and NPR:

Click here for transcript
A separate story that ran earlier that same day, but wouldn't embed is A New Nursing Home Population: The Young

How to Survive Chronic Depression: Cheryl Style

The theme for this month's disability blog carnival (which will be up on the 21st) is "long nights and what we need to get through them." I thought I'd participate, especially since I've participated in just 1 carnival this calendar year, other then the one I hosted. I used to submit to all of them. So, lets see...

1. itunes
2. caffeine
3. munchy snacks

WAIT! Dave doesn't want to know how to pull an all nighter?

In all seriousness, I've been wanting to put up this list for the last month and a half. I've been depressed most of the last decade, if not longer. The chronic nature of my depressive episodes is why I was for so long misdiagnosed as having unipolar depression. I haven't though been continuously depressed for the last 10 years. I have had some brief breaks here and there, so I'll post my tips, how I got there. If only I would listen to my advice all the time.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

1) Find a good therapist

If for no other reasons then 1. you'll be guaranteed to get out 2hrs a week (travel time counts) and 2. there's 1hr a week where you don't have to pretend to be ok and/or worry about what people will think/say. A good therapist won't tell you to try harder, but will help you figure out how to keep trying. Do you get the difference?

2) Get out at least 1hr/day, preferably during daylight.

There are a lot of hours of my day spent in bed online. This is much easier said than done. Especially if you're on a limited budget. Going places tends to lead to spending $. But I was so proud of myself when I was doing this. It was such a big accomplishment, at the time I think I was radiating with pride. If you're working you're lucky. You're out.

3) Join a PEER RUN support group.

Most people are judgmental about how you got depressed/why you're depressed/ what you need to do/are doing to not be depressed. I've never met someone at OOO who was judgmental of my journey. If they are, they're really good at hiding it. Here, again, is the link to the DBSA.

4) Exercise. How much? What kind? I don't know.

A lot of my friends are obsessive swimmers. I like to run. And ride horses.

5) Spend time with furry creatures. Unless you're allergic.

People are rarely as happy to see me as animals (dogs, cats, ponies) are. When something is that happy to see you, you can't help but be happy too.

6) Shower more then once a week.

I know what you're thinking. If I'm not going anywhere why bother? Because you'll feel less gross. You'll still feel gross, being depressed automatically makes me feel gross, but don't you want to feel less gross? Take one extra 15min shower a week. You'll be amazed. You'll also be more likely to go out. Who wants to smell?

Don't pressure yourself to shower everyday if it's too overwhelming. Just twice a week. I've been there where the thought of both showering AND getting dressed (I could do either or) made me cry.

7) Get someone to do your laundry once a month. More if you don't own a lot of clothes.

Even if you have to pay someone it'll be worth it. Laundry is an overwhelming task, and not doing so will keep you from going out, for fear that your clothes smell. If you don't know a "cleaning lady" to pay, pay a friend. If they say no, they're not really your friend. If they truthfully have OCD and are afraid of germs, they get a free pass.

8) Eat at least twice a day.

Even if you have to order take out from some place like campusfood.com because you're too depressed to go out to buy groceries / take food out / make the food that you have or even get out of bed to go to the other room to get your phone to call in a delivery. Unfortunately, you do have to get out of bed to answer the door when the food arrives. If you don't eat enough you'll start feeling physically ill and that's the last thing you need when you're depressed.

9) Keep on top of your dishes.

Because even if you don't leave all day you can still say you did something.

10) Buy a velour track suit.

This wasn't on the original list, but I went shopping with my BFF 2 weeks ago, telling her that was a necessity. I'm surprised people still wear these. Do they actually, or is it just me? The Juicey craze popped up like a decade ago. I still sleep in my velour pants I got for Chanukah in 2001. They're a MUST if you're depressed, especially in the winter. They're great to curl up in bed in, and if you have to go out you don't have to change to look put together.

I don't know what you do if you're a guy.

PLEASE ADD YOUR IDEAS IN THE COMMENTS. We could all use the extra ideas.

HORSES AND CRIPS!!!!!

It's the BEST combination!!!!!

I was looking at an article on the Baltimore Sun website and they have this little video player thing on the side, as do apparently all newspapers run by this media group, as I saw a similar looking video player on an Ohio blogger's blog. Anyhoo, I guess they have many of the same videos on every site??? This place isn't even in Maryland. But whatev! Things like this are always a double edged sword for me as they make me both happy and forlorn.

"I felt, um, kind of asexual"

As you know, I like horses. I like books about horses, like Colt, which has a crip main character, and movies about horses too. When I was a kid my favorite movie was Dark Horse -- several crip main characters and a crip horse. In Seabiscuit as well, both the horse, Seabiscuit, his rider Red, and another horse are all crips. In Dreamer, Sonador the horse, like the previous 2 movies mentioned, also gets in an accident. I can't remember if there is an accident that occurs in National Velvet. For me, books and movies about crips and horses always peak my interest. But I'm not so sure about this one...

I've written about targeted facebook ads before. This afternoon an ad popped up for the Hallmark made for TV movie After The Fall, about a girl who becomes a paraplegic after a fall during a jumping routine. You can see the 3min 45sec behind the scenes here. There are a few things that bother me from the behind the scenes. Notably the fact that if you become a full time wheelchair user you don't get such a crappy hospital-ly chair. Talk about pain. It seems to me that this is used to make this girl more pitiful-ly. The other thing is when they show the "knight in shining armour" lifting her into the truck. Way to promote pitiful crip... I mean, some wheelchair users really can't independently transfer, especially right after an accident, but I mean assisting with transfers... c'mon!

Then there's this clip above. This character seems to be the "mentor crip," the more experienced crip, the one who gets the cool chair and has confidence, who then promotes the stereotype that wheelchair users are asexual. I don't know about you, but I've never felt asexual even when I had low self-esteem. This message was never one that I got growing up, one of the things my mother did right. I got the message that other people would think I was asexual, but I have never felt asexual. Talking about being stared at and feeling like a freak because of it is a good thing, but to say that the second she popped into a chair in public she felt asexual, and to have this widely distributed on the internet is a public disservice and spreads such blatant ableist lies that I want it off the internet.

But that's just my humble oppinion...