On Privilege Part 3 I think

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

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

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

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

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

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

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

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

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

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

Acceptance

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

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

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

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

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

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

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

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...

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

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

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

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

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

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

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

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

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

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

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

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

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

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 :)

Becoming Proud and Powerful

I had most of a long post on spasticity done for today when it got erased. So here's a video, because I don't have time to write it again.

Moms & Botox: What's the Deal? Or, Botox is Relatively PainLESS (and Botox Day is Like Christmas)

I've been meaning to post this since October when Tanis posted about Jumbly's botox appointment. She called the post The Steel-Toed Boots of Motherhood. I read it and thought about other moms that have written about botox, like Ellen and Kathryn. All three of their children have cerebral palsy, all three write about their children's botox appointments with angst, and I wonder why. I am somewhat flummoxed. I thought I wrote a post over a year ago, Botox Day: It's Like Christmas, but apparently I never did. OK, I don't know anything about Christmas (remember, I'm Jewish), but as my appointment gets near I start counting down the days.

In her next post Tanis writes that the day of the appointment was a soul crushing day for her. In 2009 Ellen wrote about being scared for Max. I don't know why Max's doctor puts him under general anesthesia for botox, I've never heard of that. I have heard of using conscious sedation for little children, like what was done with Ellie.

Kathryn thinks that people who think botox is not painful are out of their mind [look at the picture below, it's a teeny, tiny needle]. Jenni and I must be out of our minds then. Kathryn, have you ever had botox? How do you know? She seems to think that the pain produced from a botox shot is 100x worse then a tetanus shot. No, Kathryn, it's not. Tetanus shots are worse. To me, botox shots hurt about the same or less then a flu shot.

I understand that these kids are 7 and 8, and that when I first started getting botox regularly I was 20. I did have botox a few times when I was somewhat younger and unconscious, during surgery, but doing it that way makes it hard to determine whether improvements are from botox or surgery. I also had botox once when I was 18, although hardly any, I think just in my thighs and opted for the numbing cream.

I fully support the use of numbing cream, conscious sedation, distraction like bubbles or I Spy books, or sheer bribery like ice cream, money, or a trip to the toy store for little kids. I might suggest calling in a child life specialist. Getting upwards of 8 shots is a lot for a kid to take. I would have been a wreak at 7 and 8. But for the last five years I haven't opted for anything for pain management. Botox is my pain management. It's a g-d send. I just don't have the patience for EMLA. Having to wait for paratransit to take me to/from my appointment tries my patience enough. Waiting for Emla to kick in might put me over the edge.

OK, OK, I'm being rather misleading. Botox is injected all over my body every 6 months. I get it in 8 muscles, and because they are rather large muscles my physiatrist spreads the shots out and injects more then 1 spot. Of course I feel it. Of course, just like getting blood drawn or a flu shot, my natural CP reaction is that my whole body tenses up even before the needle even hits my flesh. Try telling someone with spastic CP to relax. It ain't happening.

Fortunately, I was told by Dr Gormley, of Gillette, that in the case of botox, tensing the area actually makes it easier for the physiatrist to find / access the correct muscle. Score one for spasticity! Of course it hurts when the needle is in my flesh, but as soon as it is out there is no longer any pain. It doesn't linger. I don't walk out of the hospital in pain. There is some very minor discomfort, but as my current physiatrist suggests, going for a walk afterwards not only helps work the botox into your muscles and helps it to take effect sooner, it also makes that discomfort go away sooner. What do you do if you can't walk? I don't know. Ask your physiatrist.

I always wonder why my doctor always has this look of guilt or something on her face when she is giving me botox. I'm sure the look on my face isn't pretty. I do always utter multiple OWWWs during the appointment. But I always wonder why she doesn't focus on the tremendous amount of pain that she is saving me. Or why she doesn't focus on the giant smile that I'm sure is plastered on my face most of the times she walks into the room. She's there to give me BOTOX! I'm a botox junky. Dr. Alter is one of my favorite people. She's totally got me strung out on the stuff :-)

She should hear the way I talk to other people anticipatorily about botox, with that smile on my face. Or maybe I should tell her that in the weeks leading up to "botox day" I go to bed thinking about botox the way most Christian kids think about Santa Claus (I think I have told her that actually). I'm sure little kids getting botox don't think of it this way, but I know of at least one other person my age (coincidentally a patient of Dr. Gormley) who looks forward to it, although I'm not sure if she looks forward to it as much as I do.

So I wonder why these moms look at botox with such angst, while I look at it as somewhat joyous in a way. Yes, I am injecting diluted botulism all over my body, almost from head to toe (from shoulder to calf), and yes, I'm fully aware that botulism in it's pure form is a lethal form of food poisoning, having done a report on it 8 years ago for 11th grade chemistry class. But the pain I otherwise have, especially from panic attacks, is unbearable. Although I'd like another option, I've rationalized the food poisoning. Why can't mothers?

On Being Hit On

I can't believe that in almost 3 years I have never written about this. The drunk men who have hit on me at karaoke bars and on the bus, the completely sober guy who hit on me while I was waiting for my ride outside the hospital I used to volunteer at, the numerous cab drivers, and the seriously manic group member. [for those of you who don't know, mania, in some cases, can make someone hypersexual. Frustratingly continuously aroused.] There was also the bus driver who would ask me inappropriate questions, but I'm not sure if he was actually hitting on me or not. I was a regular on that bus and the only one on the bus sometimes. Maybe he just wanted conversation?

Only once (or maybe twice, it's been awhile since I've gotten hit on at a bar, I've stopped going to bars) have I ever been brushed up against, by a drunk man on the bus at about 10am. This man then got off the bus at my stop and asked me out to lunch at McDonald's. I said "I'm going to work," and then sped up as fast as possible in my powerchair so that he couldn't catch up. It was the same day I got hit on by the manic guy -- a banner day for me. *end sarcasm*

Most recently, yesterday, I got hit on by a guy at 7-11. I'm not in the best mood and he looked at me (I did not make eye contact with him) And told me to smile. He said I looked like I have a very nice smile. I'm always flattered by it, even if the man is clearly not in his right mind, has no idea what is coming out of his mouth, which he cannot control, and which he would be embarrassed about if his meds were tweaked right. This guy was not manic or drunk. So I started to smile (still not making eye contact) and then decided not to give the skeevy guy any satisfaction. Or at least I tried not to -- I couldn't get my spastic muscles to wipe the half smile off my face quickly enough.

I'd like to think that men would still find me attractive even if they weren't drunk or manic. They just would have the sense of mind to keep their mouth shut about it. I'm not picking up a guy at 7-11, certainly will not give a cab driver my number, but yet these are the only men that have the courage, or the idiacy? to give it a shot. How much of it is because of my good looks, how much of it is that because of my disability these men think that I'll settle for anything? Because I'm "damaged." How much is the lack of interest by other men because of my disability, or is it my weirdness, me being intimidating because I heckle the president for fun? It's something to think about.

In the meantime though, I'll continue to smile to myself when the drunkards and the manic group members shamelessly hit on me, politely, or not so politely, turning them down. I have too much self-respect not to wait for the man who finds heckling the president with me to be a turn on. He's out there somewhere.

Let's Talk About SEX Baby! A Repost

This was originally posted 2.5 years ago on January 6th, 2008 and was only my 11th post to this blog way back when it was hosted on Disaboom. It's so old that it took me forever to find, as I could not remember when in 2008 it was from and could not figure out which tag to click. So I'm sure no one has read it. It is on a topic I have subsequently discussed several times, the most recent of which frequently appears through my linky tool. I'm guessing that one was popular. I'm bringing this back in its unaltered original form because the sentiment at the end of the post came up in conversation with a friend recently and I thought I would pull it up for reference. ENJOY!

Like any normal, healthy, well adjusted 22 year old I spend a fair amount of time thinking about sex and talking about sex with my friends. Frankly, I would be worried if I wasn't. This past July I got an IM from this guy I used to know. I went to camp with him for 1 summer and the last time I've spoken to him was at my 16th birthday party. I don't think that he knows I have CP, but I'm willing to bet he's spent some time in my wheelchair. My wheelchair was at camp for the purpose of off camp field trips, but other then that it had a nice home behind the rock climbing wall. For the first few weeks of camp no one knew it was there, but one day I finally needed it and for some reason everyone immediately thought it was the coolest thing in the world. Most nights people would take it out from behind the rock climbing wall and take rides in it. Most of the 10th and 11th graders as well as our associated staff that summer took multiple rides in my chair.

So the guy IMs me and very quickly into the conversation says "I don't mean to sound rude or f*cked up or anything, but can you have sex?" To which I replied "You're not rude, yes I can have sex, but I choose not to." My friends were more outraged about it then I was. The way I feel, if people have questions I'd rather they just be upfront and ask.

I've never doubted that I could have sex. I have the same parts "down there" as everyone else. They look the same as everyone else's and they work the same as everyone else's. Mostly I just wondered about who I was going to have sex with. I'm not the kind of person who is going to go out and have sex for the sake of having sex. #1 getting an STI is not my idea of fun and #2 I want it to mean something. In order for sex to mean something that means that I'd have to be in a relationship with someone. But who would want to be in a relationship with me? I can't drive so every time we went on a date he'd have to pick me up. And if we ever went on the kind of date where I needed my wheelchair, he'd have to put it in the trunk for me. I can't lift it. He'd have to do everything, and who'd want to do that? Now of course that's not true. I'm not completely helpless, but it sure felt like it.

Then my thoughts focused on the practicality of having sex. I have inconvenient spasticity issues. The tightest muscles in my entire body are my inner thigh muscles. So the only thing I could think of was how painful sex would be for me. But I just decided I wasn't planning to have sex any time soon (back to that boyfriend issue) so I would cross that bridge when I came to it.

For Chanukah I got a $30 gift card to borders from my mom's cousin. I was waiting for that to get 2 books that I've really wanted. The first was The Rider's Fitness Program and the second was The Ultimate Guide to Sex and Disability, which was FINALLY rereleased a little over a month ago. They came in the mail from Amazon on Friday. I've read a few chapters of The Ultimate Guide to Sex and honestly, the book hasn't told me anything about sex that I haven't already heard. I took Sexuality in a Diverse Society. I didn't have a choice, unless I don't want to graduate. But The Ultimate Guide to Sex does have one very important thing in it that my sex class textbook doesn't have--real stories about real people with disabilities who have real sex lives. I don't have the book with me, but I believe my sex class textbook has two paragraphs about CP in the chapter that talks about disorders that lead to sexual dysfunction. How's that for an ego boost? The Ultimate Guide to Sex talks about people with disabilities who have lesbian sex, who have threesomes, I could go on, but you get the idea. And the authors didn't just interview one person for the book, they interviewed a lot of people. Defiantly a confidence booster. If people wanted to have sex with all these people then someone's bound to want to have sex with me eventually.

Usually when I go somewhere where there are lots of cute single Jewish college boys I find a chair against the wall or something and hope that no one looks at me or talks to me (other then the people I went with of course). Maybe next time I'll actually talk to someone. Not that I've really done much the last 3 days, unless grocery shopping counts as something that is, but I've been feeling very sexy. In reality I'm not as bad of a catch as I've spent years thinking that I am. I'm smart, I work out frequently, I know where I want to be in my life (even if I'm far from there right now), I've been told that I'm witty, and as I've recently started dressing better and putting on makeup more often, I've decided I'm really good looking. So I have a waddle. It probably attracts attention to my butt. That could work for me...

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.

If a Tree Falls in the Forest...

and no one is there to hear it, does it make a sound? If I have a nightmare and wake up in the middle of a horrible panic attack, did I really have a panic attack at all? You know, cause if no one saw me, I must not have had one. [image description: a fallen tree in the forest]

I haven't done a bipolar post in awhile, so I think I shall.

To continue from my last post, I thought I'd comment on another note in my DSS file, this one from September 2008, written by the current person I am working "with" from there. I copied the note originally because it contained reasoning for the denial of a note taker due to my need to leave class during panic attacks (the justification at that time makes some sense). I must have just stopped reading it there, knowing I needed it in order to be able to succeed at properly overturning that decision. It wasn't until I was flipping through my papers in the cab on the way home that I noticed what was written further down in that note. I almost started laughing in the cab, but I had to contain myself.

I was laughing because the note was written by someone who is an LCSW-C (licensed certified social worker clinical). The note actually says that "no faculty have reported witnessing 'panic attacks'." (the words "panic attacks" were in quotes throughout the entire note). It was as if to say that since no one has ever seen me have a panic attack I must not have ever had one. Especially with that whole quotes thing going on. I'd really like to know who it was that decided this person should be licensed. They should have that ability taken away.

Take a look at the diagnostic criteria for a panic attack. How many of those can you actually see? You only need to have 4 symptoms out of a list of 13; it is therefore entirely possible for someone to have repeated panic attacks that no one ever sees. The fact of the matter is though, that with me you can see it. You just have to know what you're looking for. But until you have the training and experience to notice the difference in my spasticity levels without even looking at me (I have a doctor who could notice me in the tiniest corner of her eye); until you can spot the difference between how my hands and arms are positioned, the decrease in the range of motion in my knees as I attempt to be able to exit the room; until you realize that my neuromuscular disorder impacts the presentation of my panic attacks; until you realize that I'm 24 and not 5 and I have the sense to leave the room before I start hyperventilating, you need to just keep your damn mouth shut. The people that pass me out in the hallway ask me if I'm ok. Maybe you should consult with them?

I laugh every time I so much as think about the notes in my file from that woman, because if you can't laugh at the absurd situations in your life you will never survive. This situation is absurd because what LCSW-C doesn't know these things? It's absurd because of all of the other interactions I've had with this woman. It's absurd because of other notes she wrote in my file, such as the one from this past May, where she talks about counseling me about "being emotionally available to learn."

I just looked at my shrink, "Can you tell me when I'm going to not be bipolar, because that date would be helpful for me to know."

I need a BREAK! I'm going on STRIKE!

[Image description: a framed painting of Cosmo Kramer that was on one of the episodes of Seinfeld]

3 posts in one day is a lot for me. I'm not sure I've ever done this before, but if I have it was only once or twice. Usually I write very long posts (although not recently) and I have better things to do with my life then write a million long posts. But I need this today. I really need this. It'll bring my spasticity, heart rate, respiration, blood pressure back into normal range.

This post was originally going to be titled Books! There are books everywhere to be read and it seems as if my list keeps growing. It's getting out of hand. But I just LOVE crip lit. What can I say?

[image descriptions: All images are book covers taken straight from Amazon.com . All links lead to the book's respective Amazon page]

My first book to read was The Short Bus: A Journey Beyond Normal, by Jonathan Mooney. It may be the best book I have ever read. At the very least it is in the top 5. I have 1 post about it so far and will hopefully get around to some more. I like it that much. Things spoke to me.

The next book I am going to read is CauseWired: Plugging In, Getting Involved, Changing the World, by Tom Watson (see image in sidebar). I feel like a fraud. When I signed up for Blog Action Day the first 100 people could get this book sent to them for free. GREAT! I'm a poor college student. I'm always up for anything free. Why I feel like a fraud is because I never ended up participating in Blog Action Day. School got in the way. Anyway I sent away for the book and completely forgot about it. It showed up here in the beginning of Jan when I was home. I picked it up yesterday which was good timing as I just finished The Short Bus Sunday. I hope it is good. It sounded good, but the cover makes it look like a textbook, and textbooks are boring. Don't judge a book by it's cover though. I am going to read the whole thing either way. I might learn something.

3rd on my list is is a book about community organizing that ADAPT uses. A dear friend lent it to me. When I go get it and remember what the title is I will list it and get a pic.

Next on the list is Nobody's Perfect, by Marlee Matlin and Doug Cooney. I just LOVE her and loved Deaf Child Crossing, the first in the series. I haven't bought Leading Ladies yet because it is only in hard cover and I don't want to spend the extra $. I do hope it comes out in paperback. Also, I heard a rumor that Marlee will be coming out with a 4th. Can anyone confirm that?

5th on the list is I Am Potential: Eight Lessons on Living Loving, and Reaching Your Dreams by Patrick Henry Hughes, Patrick John Hughes, and Bryant Stamford. Just by looking at the title, I don't think I am going to like this one either, but the cover is good. Patrick is blind and doesn't walk (can't find his diagnosis) and played trumpet in the University of Louisville Marching Band. He's been on TV a lot. His book was just recently published. I got the book because a local Borders closed and I went there a few days before hand to see the deals. The book was half price and I had a $10 coupon. It cost me $2 and change. Not a bad deal, so it won't kill me if I don't like it. And Hey, it was written by a crip.

6th (I told you there was A LOT) is not a crip book (what a shocker) but it was written by a local. The Urban Hermit: A Memoir by Sam MacDonald. I saw it a 2 weeks ago when I came into the library. Sounded interesting. I like weight loss too, and it's an interesting concept. I read 70 something pages one day when I was hiding out in the library trying not to get any work done. It's ok and worth finishing one day.

7th is That Went Well: Adventures in Caring For My Sister by Terrell Harris Dougan. I don't know how I feel about sibling of crip stories. Probably not worth buying but I found it on that same shelf on the library. I had to read Secret Girl by Molly Bruce Jacobs last spring when I took Family Law & Public Policy and I did not like it at all. Molly made her adult sister with MR seem perpetually childlike. In case you decide to disregard my review and read that book anyway, I am very happy to report that as of June Rosewood residential center will be officially closed. The last of its residents are getting moved to community placements as we speak.

8th on the list is Reading Lips and Other Ways to Overcome a Disability by Diane and Philip Schaper, even though I am totally offended by the title. I'm sorry but no one overcomes their disability. They learn to work with it, around it, but disabilities don't just go away as the word seems to imply. It seems ableist to me. I found out about the book because Diane is an English professor (who got Polio) here at Towson University and she and her book were featured on our website. One of these days I am going to email her and tell her what I think of the title as I know her email address because all faculty emails are the same. The book is currently in a glass case displayed in the library, but by the time I get to it it should be out of there I hope. I also hope I don't graduate before I get to book #8. I don't want to buy it.

*EDIT* I forgot all about Voluntary Maddness: My Year Lost And Found in the Loony Bin by Norah Vincent. I found this book through an Amazon "If you bought this book you may like" email. I like. A lot. I think... I'm either going to sit in barnes & nobel a lot and read it for free because I'm low on book buying $ or if it takes long enough, because this book list has grown to be ginormous, use Chanukah $.

Why the title off this post though? Because school has me really stressed out right now and I need to take an escape and get away from it. I get to hang out with my best friend's dog (a toy fox terrier if you are wondering) every Thursday night but that is not enough. So I think I am going to designate every Saturday as "don't get out of bed and read a book" day. It's the only way I'll get through this list, and I can forget about school while I read. Besides, do you remember the episode of Seinfeld where Kramer decided he would live in his shower? Well if I could live in bed permanently I would be a happy camper. And no, I am not depressed, I just like my feather bed and I have always loved sleeping and being lazy.

So this weekend I am going to forget all about school and get no work done. In addition to reading books I will be making dinner for the families at Johns Hopkins Children's House on Sunday and after that I will have my APhiO meeting to go to. The first of the semester.

Let's Talk About SEX Baby!

Like any normal, healthy, well adjusted 22 year old I spend a fair amount of time thinking about sex and talking about sex with my friends. Frankly, I would be worried if I wasn't. This past July I got an IM from this guy I used to know. I went to camp with him for 1 summer and the last time I've spoken to him was at my 16th birthday party. I don't think that he knows I have CP, but I'm willing to bet he's spent some time in my wheelchair. My wheelchair was at camp for the purpose of off camp field trips, but other then that it had a nice home behind the rock climbing wall. For the first few weeks of camp no one knew it was there, but one day I finally needed it and for some reason everyone immediately thought it was the coolest thing in the world. Most nights people would take it out from behind the rock climbing wall and take rides in it. Most of the 10th and 11th graders as well as our associated staff that summer took multiple rides in my chair.

So the guy IMs me and very quickly into the conversation says "I don't mean to sound rude or f*cked up or anything, but can you have sex?" To which I replied "You're not rude, yes I can have sex, but I choose not to." My friends were more outraged about it then I was. The way I feel, if people have questions I'd rather they just be upfront and ask.

I've never doubted that I could have sex. I have the same parts "down there" as everyone else. They look the same as everyone else's and they work the same as everyone else's. Mostly I just wondered about who I was going to have sex with. I'm not the kind of person who is going to go out and have sex for the sake of having sex. #1 getting an STI is not my idea of fun and #2 I want it to mean something. In order for sex to mean something that means that I'd have to be in a relationship with someone. But who would want to be in a relationship with me? I can't drive so every time we went on a date he'd have to pick me up. And if we ever went on the kind of date where I needed my wheelchair, he'd have to put it in the trunk for me. I can't lift it. He'd have to do everything, and who'd want to do that? Now of course that's not true. I'm not completely helpless, but it sure felt like it.

Then my thoughts focused on the practicality of having sex. I have inconvenient spasticity issues. The tightest muscles in my entire body are my inner thigh muscles. So the only thing I could think of was how painful sex would be for me. But I just decided I wasn't planning to have sex any time soon (back to that boyfriend issue) so I would cross that bridge when I came to it.

For Chanukah I got a $30 gift card to borders from my mom's cousin. I was waiting for that to get 2 books that I've really wanted. The first was The Rider's Fitness Program and the second was The Ultimate Guide to Sex and Disability, which was FINALLY rereleased a little over a month ago. They came in the mail from Amazon on Friday. I've read a few chapters of The Ultimate Guide to Sex and honestly, the book hasn't told me anything about sex that I haven't already heard. I took Sexuality in a Diverse Society. I didn't have a choice, unless I don't want to graduate. But The Ultimate Guide to Sex does have one very important thing in it that my sex class textbook doesn't have--real stories about real people with disabilities who have real sex lives. I don't have the book with me, but I believe my sex class textbook has two paragraphs about CP in the chapter that talks about disorders that lead to sexual dysfunction. How's that for an ego boost? The Ultimate Guide to Sex talks about people with disabilities who have lesbian sex, who have threesomes, I could go on, but you get the idea. And the authors didn't just interview one person for the book, they interviewed a lot of people. Defiantly a confidence booster. If people wanted to have sex with all these people then someone's bound to want to have sex with me eventually.

Usually when I go somewhere where there are lots of cute single Jewish college boys I find a chair against the wall or something and hope that no one looks at me or talks to me (other then the people I went with of course). Maybe next time I'll actually talk to someone. Not that I've really done much the last 3 days, unless grocery shopping counts as something that is, but I've been feeling very sexy. In reality I'm not as bad of a catch as I've spent years thinking that I am. I'm smart, I work out frequently, I know where I want to be in my life (even if I'm far from there right now), I've been told that I'm witty, and as I've recently started dressing better and putting on makeup more often, I've decided I'm really good looking. So I have a waddle. It probably attracts attention to my butt. That could work for me...