Judgement

It's the end of the year. My insurance has an out of pocket maximum, after which point you no longer have copays for visits of any sort or medications. I received a $13,000 powerchair at the end of April, and unlike last year when we met the cap in Dec, this year all of a sudden in the beginning of July my whole family got practically free healthcare. We still had to pay the monthly premium, but we all began thinking up ways to capitalize on this. I continued to go to physical therapy past the point where it was useful, because it was free and a trainer costs $. After 6 or 7 years of talking myself out of getting new AFOs, because most years I've worn them less then half a dozen times, so what's the point, I got casted for a new pair last week, just under the wire. I also decided to try out a new primary care physician, since it'd been 14mos since my last physical, even though the plan had been to wait until April. I also managed by fate to get my annual follow up with my physiatrist moved from January to December.

Oddly both of those appointments, although not originally scheduled this way, ended up being yesterday. I really like my new primary care physician (PC), and even though I never plan on seeing her because I am the healthiest person I know, it's nice to know that I found someone I am comfortable with. Although I noticed slight judgement in her voice. If both of those appointments hadn't ended up on the same day I wouldn't have noticed the same judgement from my physiatrist, whom I have seen just over half my life.

PC doc who saw me walking down the hall, came in and almost immediately said "the baclofen & valium are for muscle spasms from cerebral palsy?" which wasn't noted on my paperwork because there wasn't a line next to "other."

"yes."

"What's the lamictal for?" I was a little surprised she didn't ask me if I had seizures, as 1 in 3 people with CP do. Maybe that was on the list and I didn't check it

"bipolar." That wasn't listed on the form either, so I had checked both depression and anxiety instead.

The next question she asked me was who my psychiatrist is, and then she asked me how I was doing in respect to that. My physiatrist asked me the same question although the conversation went like this. "J. M---. I have a new one again and I don't like her all that much either." And I got a look, which was fine then, but not the next one, when she asked me how I was doing. Actually, it was really the tone in her voice when she asked me. She has every right to give me all the looks she wants. I didn't name this blog "Uppity Crip" for nothing. She knows half the time she tells me not to do something I do it anyway. Flashback to my Aug appt: "You really should have consulted me before you did that." "I did. I didn't like your answer." :-)

Anyway, the tone in her voice was the same tone I'd gotten that morning. It was as if to say that I'm not capable of doing what I should be doing, that I don't know. It was as if to say that people with this diagnosis don't have the capacity to make responsible, smart decisions. That we're all a mess 100% of the time. PC doc doesn't have a right to make that judgement. The other one knows just how much of a mess I've been over the years, but I'd still like some credit.

I mentioned this to my shrink this afternoon in less words, and she gave me a look. It was a different look. It maybe had a hint of exasperation. So I replied with "I know what I should be doing..." Infer from that what you will, but I do try.

This isn't enough to send me looking for another PC doc, because it was a tone of concern from both of them, not a tone of fear. Not a tone of "all people with this diagnosis are violent," but to me it was still a tone of well meaning prejudice.

Well meaning prejudice, you ask? How can there be such a thing as a well meaning prejudice? Well meaning prejudices are "permissible prejudices," statements or thoughts that are so ingrained in society that they are taken for granted as truth. Mary Johnson does a fantastic job of discussing permissible prejudices as they relate to disability in her book Disability Awareness -- Do it Right! The inferiority of black people used to be a permissible prejudice. Now even racists know that society frowns upon them even if they don't give a damn about it. See this page for the definition of a permissible prejudice as it relates to homophobia. In my google search I noticed people referring to homophobia as the last permissible prejudice. What about prejudices against fat people? What about ableism, which encompasses every disability, including this one? I beg to differ with that blanket statement.

It rubbed me the wrong way, being judged by smart people who I'd hope would know better. But if they really don't know better, if they had no clue they were giving off a vibe, is it really right for me to judge them for judging me? It's what I'm trying to figure out, but I so far have no conclusion. Because if you really know me and you judge me on the basis of me being me, you might be right, even if it doesn't feel good.

You Know You Have CP When...

So I was getting a massage this morning, which is a regular thing now that I've found steady (part-time) employment. Something I'm insecure about, only because I feel like most people don't understand that I've lived with a chronic pain condition my whole life, and if I mention it I feel like they'll delegate me to the category of "spoiled," which is not what this is about.

But that's neither here nor there. I'm probably in the minority of massage goers in that I can't imagine myself ever falling asleep. I find myself too interesting, I guess you could say. I like to pay attention to what hurts how much. It's useful to know. If a problem area hasn't been bothering me and it hurts less then usual, it's nice confirmation. If it hurts just as much, I wonder what's going on. I also think I'm in the minority of massage goers in that even as a kid I paid attention to orthopedists and physical therapists, and I took anatomy and physiology both senior year of high school and sophomore year of college, so I have a decent understanding of what muscles are where. I generally know what she's working on, even if I don't remember the names of 100% of the muscles.

Often, like this morning, when something is particularly painful, I'll go "What's that?" I couldn't quite tell if she was working on my lower back or the top of my pelvis, which is kind of the same thing, but it was something she hadn't worked on before. I could tell she was right at the insertion point of whatever it was.

To get to the punch line of this story, she says "your glutes and your hip rotators." And the only thing I could think of in my head was "If this hurts that much, I've gotta have a firm ass. At least I won't be like 80 years old and have a saggy butt. Score one for spasticity!"

LOL...

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.

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.

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?

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'"

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 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]

On Willowbrook

At about 45 secs in Geraldo says "...the tragic result of Bernard's being incorrectly diagnosed as mentally retarded, though his actual condition is cerebral palsy. There is nothing wrong with Bernard's brain."

Someone needs to tell Geraldo that CP is a brain injury.

As you can see, this video is fully captioned. Thanks NDRN!

True Story Tuesday: "Grandpa you're a WUSS!"

Click on the picture to see the others

I'm renting Breaking Bad, and I've watched the first season so far. I haven't had access to cable most of the time it's been on, so it's the first I've seen it. I don't know why I'm watching it. It's bizarre. Actually, I do. The son in the show, Walter Jr, played by RJ Mitte, has CP, and he's a real honest to g-d cripple in real life. Unfortunately, I found out from IMDB that the show has made him 'crip it up,' as I like to say. But whatever, he's still authentic, and I'm not sure you could train yourself to have a pronounced 'CP slur.' That's what impresses me the most, he's on TV and he even sounds like a cripple! I find that groundbreaking, because they don't portray him as a supercrip, he's just a 15 year old mainstreamed high school kid.

A big part of the show, from the first episode onward, is the premise that his father is diagnosed with stage 3A lung cancer. In the first 4 episodes he refuses treatment, so in the 5th the family holds an intervention. When it comes to Walter Jr's turn to speak, he says

"This is bullshit ... I'm pissed off ... I-I'm pissed off. 'Cause you're being -- You're being... Y-you're -- You're a pussy. You're, like, ready to give up ... What if you gave up on me, huh? This here [he picks up one of his crutches], all the stuff I've been through, and y-you're scared of a little chemotherapy?"

That little speech gave me a flashback. Brought me right back to when I was 8 years old and my grandfather, 67 at the time, was diagnosed with prostate cancer. They cut it out and he was fine for the next 10 years, until he died of a massive heart attack.

I remember sitting in my grandparents kitchen, his surgery had been scheduled, but I don't know how long he had before the date. It could have been the next day, it could have been scheduled for a month later. Anyway, people were talking, and he was scared. I just looked at him with the innocence only a young child could have, and stopped him right in his tracks.

"Grandpa you're a WUSS!" I shot back.

I think I was too young to know the word "pussy."

He didn't even know what the word wuss meant. Never heard it before. I was too flabbergasted at the fact that he'd never heard it before to explain to him what it meant. My mom had to.

I had already gone through my first surgery 2 or so years before. Hamstring transfers that left me in a spica cast for the following 8 weeks. [man I wish they had this cast cooler thingy 20 years ago, or even 9. It's a good pic of a spica] So many months of physical therapy. My grandpa had none of that. What's a little prostate surgery to an old man, I thought? C'mon!

I don't remember if I was scared of that first surgery or not by the time it came. My parents put me into a few months of psychotherapy before. But, if I was, by the time I was 8 I didn't remember being scared at all. Bitter still at that point, very much so at the surgeon who had lied to my face about the outcomes, but NOT scared. I was 5, you're 67. Man up!

Certainly gave him a different perspective...

My Non-Existent Trauma

I'm writing this for someone I know in real life; someone who reads this blog and comments profusely. This person lives across the street. I'm not usually this obvious in calling people out, but in this case I need to be. You still wouldn't be able to google her and have this pop up, so I feel her identity is adequately protected. I am writing this because I don't know what else to do. Repeated conversations over several months have not worked. Maybe a blog post will? I can't say you haven't gotten the hint because I haven't been hinting. I've been straight up. [BTW, I welcome comments from anyone]

I am going to say this for hopefully the last time, because I'm getting very frustrated--

I DO NOT HAVE A TRAUMA BACKGROUND.

Period. The end. I spent most of my last therapy appointment discussing this (you're not the only one who has mentioned trauma in relation to me) and

I DO NOT HAVE A TRAUMA BACKGROUND.

Ok, so that wasn't the last time I said that because I just said it again... but hopefully now it is.

My shrink (who I have been seeing faithfully for the last 3.5 years) said that she has actually been quite surprised that I don't have a trauma background given everything that has happened in my life (both disability and non-disability related). I've got a long list of things that could have had a lasting traumatic imprint on my soul that haven't. I guess you could say I'm rather resilient, which is not a word I would have ever thought to pair up with Cheryl until just now. Not a part of my identity at all. She said

"It's not something that's ever entered my mind with you."

This however has not been enough to end the incessant badgering. It's where I'm at a complete loss now. Because when I asked my shrink what I needed to say to this person, she said "Tell her I've had extensive trauma training and it's not something that's ever entered my mind with you."

I know, I keep repeating myself, but maybe if it doesn't sink in the first time, it'll sink in the 3rd? She got it the first time by text immediately following my appt while I was waiting on paratransit. That first time I (we?) was (were?) immediately invalidated, and that's something you just don't do to me. It's one of, if not my biggest pet peeve, invalidating me, what I feel, what I experience, how I perceive things. If you want to talk trauma, this is my trauma. And this. This too (the first paragraph only) is all connected. Same person involved. These are the incidences that have led to panic attacks and nightmares.

I've thought about this continuously over the preceding 8hrs before starting to write this. Maybe I have experienced trauma. Fine. I give up. I'll tell you what you want to hear if it'll make you stop. Being brushed off for seven years, when I knew I needed more extensive and/or differently tailored psychiatric treatment caused trauma. This woman above caused trauma. Maybe the physical therapist who dismissed my pain (that was bad enough to make me cry) as me wanting to get out of therapy, when I actually had a post surgical complication caused trauma. She got fired FYI. Oh yeah, there was that 5th grade art teacher too (I needed a hell of a lot of psychotherapy to deal with him)... But it's not the forced therapy or sending me to the vice principal that caused trauma, it's the dismissiveness. If you can't see it, it's not there. NOT TRUE!

My friend, not wanting to listen to me, seems to want to think that having a physical disability, and everything that comes along with it, is deeply traumatic in and of itself. NOT TRUE EITHER! How do I explain this? It took me another 4hrs after my appt to come up with it.

Saying that experiences directly related to cerebral palsy -- PT, surgery etc -- are inherently traumatic is like saying experiences directly related to being black -- learning how to style black hair (which I hear is difficult), having someone cross the street when they see you coming their way on the sidewalk -- is traumatic. Now, I am clearly not black, so correct me if I'm wrong, but in relation to the CP stuff, my shrink and I said the same exact thing at the same time (that's a first for that)

These things weren't traumatic, they were MY NORMAL.

Having twice weekly physical therapy starting at 6mos old, needing to be taught how to roll over and sit up and walk up and down stairs wasn't traumatic, not unless you count having to go to hebrew school on Sunday mornings as "traumatic." Or having to do the dishes, or sitting through 10th grade geometry class as "traumatic." All kids have to do things they don't want to do. Heck, all adults have to do things they don't want to do. It's just the way life is. It's not "trauma." This is trauma.

And no, I am not diminishing my trauma. Hell, why would I do something that is my own pet peeve? Don't you do that to me. PLEASE!!! Would you tell a black person that the fact that they are black means that they experienced trauma? Would you tell a proud black person, who cherishes their identity and culture that they are denying their trauma? Then why do you continue to disbelieve me?

Friends

I've been thinking since Sunday that I don't have a lot of friends, and I don't like that I don't have a lot of friends. Not that I need a lot of friends, having to keep up with and coordinate plans with 50,000 people would be overwhelming and EXPENSIVE! 10 I've decided would be a nice number.

Making/keeping friends has always been hard for me, as I'm sure it is for most people with psyc disabilities, but surgeries and physical therapy are added barriers when you're a kid. There was a long period of time known as high school where I would consider that I had 2 friends.

College was easier, I think mostly do to proximity (except for the year and a half I commuted from home and had no friends). College kids live on top of each other. It's almost impossible not to make friends. Throughout the times I lived in the dorms I'd say I had 6-12 good friends (6 was a little low, I still felt somewhat isolated and alone, but I was unmedicated during that time). Some of them drifted in and out, some of them were continual. But, as happens, we drifted apart and I don't speak to a single sole.

It wasn't ever a transition where I had no friends, but there was a significant dip, and now, I realized Sat night, I have just 4 good friends. Not that I'm not thankful for my 4 good friends, I'm incredibly grateful, but I feel like I could be monopolizing, unloading on them too much. I think a bit of depression is making me focus on this, but this isn't a bad thing, taking stock of my life. I decided 10 was good. There was enough to go around.

The situation is this: I've never had a problem hanging out with people in structured groups, such as youth group [outside link] in high school, and camp when I was there, but it's always been hard for me to make that jump to deeper friendships outside of those structured times. What would you call a relationship that's in limbo right between an acquaintance and a true friend? I guess you could say that over the last half of my life I've had quite a lot of those, whatever they are. Still do.

What I don't have, what I'd like to have, is a larger network of people whom I wouldn't mind if they showed up at my door in a crisis at four in the morning (FYI, if you try to be polite and call first, I'll probably turn off the phone); whom I wouldn't feel like I was imposing on if I called them up at 7pm on a Saturday night and told them I was packing 2 changes of clothes and calling a cab because I couldn't be alone (did that once a few years ago).

Unfortunately, some of those people, who are not in the counted 4, live in Chicago (Shari Lynne & Sean are SO CUTE [shameless plug for their new blog] together) and Austin [picture right is Shari Lynne, Chicago, and Sarah, Texas] and I only get to see them every 6mos to a year at national actions. I'm not much of a phone person depending on my moods and find it difficult to keep up with people when they're not in easy transportation distance, which, being a non-driving crip, isn't very far. I cherish my weirdness and they cherish their weirdness, and that's hard to find.

Which, you know, leaves me with 4 true friends unless I decided to move. I doubt I'm living in Baltimore for the rest of my life (if you told me that 4/5 years ago I never would have believed you) but I'm not moving anytime soon.

Last week Therese did a post on 12 ways to make (good) friends, and I think that's really what put this in my head. It took 6 days to get it planted in my head and now I can't get it out. Joining OOO really did wonders, that's where I got 2 of the good friends and a gazillion acquaintance-friends (or whatever they're called) but when they stop coming we stop talking. I have in the past "stolen" friends from other friends, as Therese put it, but you have to have enough friends to "steal" from. I wouldn't call it stealing actually as it just created a larger network that hung out in a bigger and bigger group...

I didn't sleep well last night so my mind won't let me come up with a cohesive ending thought. So I guess I'll just end it here unless you have any "cross talk" as we call it at OOO...

CURE PITY!

I realized the other afternoon that it's October, disability awareness month, it's 2/3 over, and I've done nothing for it. We can't have that! So without further ado, here's a video from Gillette Children's Cure Pity campaign. There's a bit of subtle ableism in there, but I still think it's great.

Privilege

A lot of feminist blogs talk about privilege. This is not something I've ever talked about before, probably because disability ranks so low on the kyriarchy (I just learned what that word means) that it's hard to think of it within this context. But there can be privilege associated with disability. There's healthcare privilege.

I've been privileged to have great healthcare throughout my life. For example, my powerchair cost us a $10 copay. A multi-thousand $ surgery cost us a $10 copay. Of course that was just the surgeons' bill, anestesia and PT, and the actual bed and meals all had their own copays. As did the multiple copays/week for the rehab that took over a year. But the point is, even though the total costs of that surgery (including prescription copays) was thousands of $ or maybe 10s of thousands of $, it didn't cost the million $ that it most likely would have had my parents been forced to pay out of pocket. I wouldn't have been able to have the surgery I needed had I not had top notch health insurance that didn't have a cap on how much $ they'd pay out/year or stuck firmly to the number of visits/year (we still had to fight to get enough, put the point is that we got it).

I'm writing on this topic now because even though I've had just OK health insurance in the interim, for the last 15mos I've had kick ass federal insurance that I can be on for the rest of my life. The day before I went on my vacation a few weeks ago I went to pick up a refill on my valium as traveling aggravates my spasticity. As 30 2mg tablets of generic valium costs just $11.99 without insurance coverage, my copay with my kick ass insurance cost just 53 cents. As I opened up the change compartment of my wallet and counted out my 53 cents, I couldn't help but think about my privelge and about the 100s of thousands of people in this country who have to choose between groceries or medication.

My local grocery store honors rite aid, target, kmart coupons that come in the Sunday paper and get you a $10 gift card for every new or transfered prescription. So in essence the store paid me $9.47 for getting my prescription filled there. I went and bought hair clips and eye shadow with my $10. That is a luxury, as I have enough $ that I don't have to spend it on food. That to me is the highest form of privlege.

Aimee Mullins ON DISABILITY

IT'S EVEN CAPTIONED! Found through the blog Born Just Right, and then a few days later on Ryn Tales Book of Days, and then Terrible Palsy. It seems to be floating around mommy bloggers lately. I have no comments, this needs none; it should speak for itself.

I Wish There was Some Way to Impress Upon Kids who Have to go Through Absolutely Horrible Torturous Therapy...

that I now choose to do absolutely horrible torturous things to myself by my own free will. That really, when they are 20 or 22 or whatever, they will be oh so incredibly thankful for all of that suffering. There isn't anything anyone could have ever said to me whether it had been a physician (I think I am in the minority here in that I have mostly had positive experiences with doctors. I've very rarely been treated like an "object") or some random 20 or 22 year old college student who had CP. You'd think if "your own kind" tells you things that it might sink in. Nope. Not when it comes to absolutely horrible torturous therapy. It would not have worked, I guarantee it. I can see myself at 10. "So what. So I am going to be thankful when I am older. I don't care. I don't want to do this. I don't want to do this!" There is one really bad thing that comes out of tons of therapy. I spent so much time alone with adults, I never really learned how to interact with my peers. But the rest I think is good, for the most part.

There was one thing that I once said to a 10 y.o. kid who I think was an incomplete quad (I'm not allowed to know, HIPPA) that I think actually got through to him. I was playing UNO with him when it was time for him to go to PT. He kept looking at me like I was supposed to stop the CNA from getting him out of bed and into his wheelchair. So I said "What are you looking at me for? I'm not going to stop her. When I was younger I had to go to physical therapy, speech therapy, and occupational therapy, and I didn't want to go. Nobody cared. Nobody's gonna care that you don't want to go either." That is what a 10 y.o. needs to hear. I'm sorry it sucks, but too bad. It doesn't just suck for you, it sucks for everyone else too. Not, you'll be glad you did it when you're older.

Why am I thinking of this now? Well I can think of 2 things that utterly shock me. The first is that as late as high school my PT would put me on the treadmill backwards going 0.5mph. I b!tched and moaned. She said too bad, it's good for your glutes. I go to the gym semiregularly now and I like walking backward on the treadmill. It's not just good for my glutes. Since I am going at such a slow pace I can concentrate on kicking my abs into action which in turn both decreases my waddle and straightens me out. I LOVE that I stand so much straighter now. I spent 22 years hunched over and only 6 months straightened out and I can't believe how crappy I felt when I got depressed and stopped going to they gym. OMG how I love being straightened out. It feels SO GOOD. Also, now that I can walk backwards at 1.0mph I really have to hold on. I kind of push down like if I was using parallel bars and it really works out my lateral delts, which is good because I haven't really concentrated on that area.

For Chanukah my mom gave me horseback riding lessons. That is my most favorite thing to do in the whole wide world. I rode from when I was 3 until I was 16 and the divorce lawyer got my horseback riding money. It's been 6 years since I've really ridden. I suck. I've almost completely lost my form. I'm leaning to the right so much that I feel almost like I might slide off one day. It's a complicated mess of CP reasons why I'm leaning so much, but I used to not really lean. It took years of being tortured by my trainer to get me to not lean all that much.

[This picture of me was taken in 1988, when I was 3. I scanned it in for a school project & I think I look cute, so I added it.]

This new trainer is either going easy on me or is not as good. I was just getting in the shower when a light bulb went off. "I know what to do to stop leaning! I need to ride without stirrups." Oh how I HATED riding without stirrups. I spent at least 3 months straight spending probably half an hour riding without stirrups 1-2X a week. Oh how I b!tched and moaned. When you are riding without stirrups and lean as much as I lean, you don't just feel like you are going to fall off -- you do fall off. If you don't want to fall off, you stop leaning so much.

When my trainer wanted to be really mean she would put my horse on a lunge line (kind of like a really long leash that attaches to the saddle) so I didn't have to worry about my horse running me straight into the wall, take away my stirrups, make me drop the reins, make my horse trot, and then say "Put your arms out, and pretend like you are juggling. Juggling helps you learn how to sit up straighter. I wouldn't put my arms out. "I am going to fall off," I whined. "You are not going to fall off," I got. "I don't care how long I have to stand here, I'm not helping you get off until you do it and you can't get off by yourself."

Now I am going to go to my next lesson and tell my new trainer that for the last 10 mins I want her to help me get my feet out of the stirrups. I am flabbergasted. I even want to juggle too. One step at a time though.

I feel better both physically and mentally doing these things. I know that I need to "torture" myself now more then ever, or I won't be able to survive my life. I don't mind torturing myself. Surviving my life is worth the sacrifice. How do you tell that to a kid though? I have peers who have CP who are just fed up with everything. They've had enough of everything so they just flat out quit and sit on their butt all day. It's a shame.