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.

The Empowerment of Choice

Yesterday I did one of the coolest things ever. I walked to Starbucks. And then I walked to Barnes & Noble too. The whole time I was walking there all I could think about was how cool it was that I just decided I wanted to go there, got dressed, grabed 2 books, my wallet, keys, phone, and crutches, and headed out the door. I didn't have to tell anybody where I was going, why I was going there, how long I was going to be there, or wait for, ask, or beg someone to take me there. I just went. It was a much better thing to do then sit in my apartment alone all day. I think if I would have done that I would have lost my mind, even though all I did was read and I would have done that anyway, even if I didn't go out. A change of scenery is always good for the mind.

When deciding to go out I had to first plan out my route. I couldn't cut through buildings on a Sunday, so I had to figure out how else to get there. Then take an inventory of all my different mobility aides to detirmine what was best to use in this instance. My choices were:

1. Nothing (bad idea)
2. UCBs (to the right)-- they look something like that, except they end before the toe and they're purple, not pink
3. UCBs and crutches (crutches to the left)-- mine are black w/polka dots that I painted on last fall
   
4. AFOs (to the right)-- I think that's the closest thing to what mine look like, except that they only have one foot strap and they're supposed to look like jeans.
5. AFOs and crutches
6. Jazzy (to the left)-- that's my chair model in teal like mine, but I have a black seat. Isn't it pretty?

I think those were enough choices, don't you?

The thing about choices such as this one is that you have to make it by yourself. There is no possible way that someone could have made it for me. A few months ago someone who should know better started a sentence with "People like you..." in relation to bipolar issues I was having. Don't you just hate that? There are no people like me. CP is so variable that it would be impossible for anyone to tell me which one(s) I should use. No one has my exact spasticity issues. Everyone with CP has fatigue issues, but some people get more tired then others. And in response to that person, having CP and bipolar disorder is a whole other ball game then just being bipolar.

So yesterday I needed to decide where to go and then what to use to get there. It all depends on the type of pavement, whether it was relitively flat or extremely hilly, the weather, what I did yesterday or even the day before, and what my plans were for today or tomorrow. Deciding whether or not to take the chair to the library today wasn't such a thrilling decision, but somehow the act of deciding to wear my UCBs and take my crutches to Starbucks to go read was thrilling. I think that was because there was more to consider in going to Starbucks and it was also out of the norm of my daily activities, so it wasn't as automatic a decision as today's decision was.

This summer a lot of things I have done have been rather empowering. For example, meeting a friend for a "secret excursion" and dinner down the street or meeting a friend at the mall on a rough day, was empowering.

Deciding to ditch my new laptop and force my shrink to hold the power cord for ransom (I can't get it back until April I decided) was empowering because she never asked, forced, or coerced me to give it to her. Rather, I simply walked into her office, handed it to her, and told her I didn't want to be anywhere near it. And since I made her take it, I decided when and how I'm getting it back from her. Pretty much all by myself.

Making doctors appointments specifically when and where my mom can't go is empowering. I'm 23. Most 23 year olds get themselves to their own appointments. Why should I be any different?

Now I feel like a 2 year old. 2 year olds do 2 things. They ask "what that" so many times that I might want to scream, and they want to do everything themselves, whether or not they really can or whether or not it's safe. They learn from doing and exploring their world. So do 23 year olds apparently. I've been relishing in the self-detirmination--deciding, what I want, when I want it, and how I need to go about getting it—it’s taken to learn that.

It's something I think most adults take for granted--not having someone telling you what to do all the time. Or even deciding what it is you want, but not being able to do it because someone else thinks they know what's best for you, or just doesn't want to/feel like helping you. On the subject of help, achieving self-detirmination doesn't mean that you do everything by yourself. That's impossible; even for ABs. It just means that you're in charage of the help that you get. It means that you're directing it. As human beings self-detirmination may very well be the most powerful tool we have. You feel better about yourself and I bet accomplish more when you have control over your life. Because I am a PWD self-detirmination took longer to achieve. I still don't drive, so deciding where I wanted to go and when I was going to get there always revolved around my mom's schedule, for example.

The most empowering thing from yesterday was that I was physically able to choose to walk to Starbucks and then to Barnes & Noble and back. It was about a 2.5mi round trip and not something that I was physically able to do 2 years ago when I tried, or even last year I tried to go half way. Both times I ended up feeling like death. But yesterday I thought I could do it and decided to try. The name of the game was let's see how far I can go before I sound like I'm about to lose a lung. I never did. My breathing never went above normal from my extra energy exertion. It was cool because if I was with someone else they might not have let me try and I would never know that now I can do something I used to not be able to. It was cool because I chose to walk all that way and forgo the gym today. Next time maybe I will choose to take the chair so that I can walk to class instead.

More and more as I am getting older I am given more responsibilities. Just like everybody else. But unlike everybody else, each time I am either given a choice or forcefully take it from someone (I can be very explosive at times) I start to appreciate my choices that much more. Even a choice that may seem small to an outsider: crutch it or chair it? That's really rather big.

I've had a Tiff Moment

My experiences at the grocery store (click here & here) are nothing like Tiff's (click here & here). No one was talking directly to me. This, however...

Classes start tomorrow. I have Death & Dying at 11am (insert sarcasm YAY!!!!) I had a Drs appt up here on Wednes and the plan was to stay here, but plans change and I just got here at 6:30. Not much time to get ready is it? But now I’m going off on a tangent.

I was lucky when I had to scramble for housing last Aug that I found a room for rent in a house that a) had no stairs to the front door and b) had a room on the first floor that also had a stall shower. The house is owned by a widow with a double mortgage who doesn’t have much income. It is a 2-floor house but someone who lived here before her added a bathroom and 3 bedrooms in the attic. So there are 6 bedrooms and rooms in the basement, which has a separate entrance. She has 2 daughters and then there were 2 other college students here and 3 women in their mid-late 20s. I come to find out tonight that one of the college students moved out while I was gone over winter break and some woman around 40 moved in (weird I know). About 2.5 hours ago I came out of my room to heat up some dinner and she was in the shower. When she got out of the shower she put on her robe and came over to say hi. “Hi I’m (I already forgot her name) and I just wanted to introduce myself. I’m in the blue bedroom and I just wanted to introduce myself since we are going to be floor mates. Have you always been in a wheelchair…?”

“No, I hardly ever use it. I’m just sitting in it right now because it’s really comfortable.” Truth is my only choices of where to sit are my manual chair (not comfortable at all), my bed, or my Jazzy. The wireless here sucks and my best option is the Jazzy. Anyway…

“My husband’s a paraplegic. I’m recently separated. I’ve been married for 18 years. Are you a paraplegic?”

“No.”

“Do you have CP or…”

“Yes.”

My crutches are currently leaning against my bed. “Oh do you walk with those?”

“Yes.” I wasn’t about to get into it that the only day my class schedule warrants using them this semester is Tues and that other then that I walk unaided. What’s the point?

“My husband uses those crutches too. I’ve always had a lot of sympathy for—oh well, you probably don’t consider yourself disabled.”

“Yes I do…” HELLO??? I have 2 wheelchairs, a pair of crutches, and my AFOs out that she could see. I also have a pair of shorter orthotics I wear most days. What am I??? This is not something like ADHD that could arguably go either way.

"Well let me know if you need any help..."

SYMPATHY??? SYMPATHY??? No wonder she’s getting a divorce. Has she learned nothing form living with a paraplegic for 18 years? Come on…

Medications

I have written previously about my recent sleep problems. They haven't gotten any better and I've decided that I just do not want to be doing what I've been doing--sleeping pills. I agreed to try sleeping pills because I have a 9am class next semester and right now I will do anything that makes me be able to get to it. This is the second time I am taking this class and there is not going to be a third time. There just isn't. So if taking sleeping pills means that I will be able to get up at 7am then I'll take sleeping pills. But I haven't been completely comfortable with the idea of taking sleeping pills. Why? CP is almost synonymous with fatigue. It flat out takes me more energy to do anything, which means that I am almost never not tired. I am already on one medication that has the side effect of keeping me more awake; it isn't sitting well with me to then take one to put me to sleep. I feel like I'm being controlled by my medications. They dictate when I am going to be awake and when I am going to be asleep instead of me dictating when I am going to be awake and when I am going to be asleep. I need to have control over what I do and do not do, not some inanimate man made object. Besides, they're not solving the problem anyway. The last 2 days I've had my alarm set at 7am to practice and both days I slept right through it. I'm completely dead to the world. That isn't seeming to fit with a 9am class. I tried taking half the dose, which worked for a few days, but then that wasn't enough, and one is obviously too much. So now what do I do?

I have 2 choices. One is to take nothing and be up the entire night. I have a feeling I'll get tired around 6am. The other is to take some valium. I have valium for when my back acts up, and it knocks me out but not enough that I will not hear my alarm. I'm not going to say that I have never used valium as a sleeping pill before. I'm only human after all. The way I figure it, 30 pills lasts me about 14 months, so if once in a blue moon I take one to put me to sleep, who's going to know? That was a fine idea until I came to the absolute decision that yes, medication is absolutely ruling my life, but that no, I didn't have to let it. So while valium is certainly a better option than seriquil, I have decided that I am going to stay up all night. I have decided that I am going to go to bed every night (or morning) at whatever time I finally feel tired, but that my alarm is going to stay set at 7am and I am going to use everything I've got to drag my butt out of bed and directly to the gym. After a few days of very little sleep I've got to be able to go to bed at a reasonable hour.

I've been doing a lot of free thinking since I've started this blog, trying to keep my brain open to whatever the next thought is that happens to wander in. I was thinking about the idea of having medications control my life and I came upon something I think is very profound. I decided that medications are an aide in the same way that my orthotics are. They are an aide that I use to allow myself to be able to reach my greatest potential. If I didn't have orthotics my feet would hurt all the time and I wouldn't be able to go places and do things because I would be so uncomfortable. So you see I'm not opposed to medications in their entirety, just the ones that do not enhance my life. Sleeping pills do not, so they are out.

What about the medications that I do find beneficial? I seem to go in phases with those. Sometimes I take them and sometimes I don't, kind of on a whim. If they are an aide that is supposed to enhance my quality of life, wouldn't I always take them? I never leave my house without my orthotics in my shoes. I would never dream of it. I wear sneakers with formal wear because that's what they fit in. I don't like doing that, but I have to. It's just simply a fact of my life. Why then have I not made medication a "fact of my life?" Logically speaking I should be more likely to take pills then to wear orthotics. I flat out asked for the pills. I never asked for braces--I got my first pair when I was a baby. My orthotics make my feet sweaty all the time. I haven't had any negative side effects from the medications I'm on now. The whole thing just flat out doesn't make any sense.

I like to say that I don't need things. I don't need left handed desks, I said in 9th grade (even though I was having painful spasticity related issues in my left arm). I got broken down and my parents made my school order left handed desks. My arm hurt less. I don’t need to bring my old crutches up to school. I didn’t have 7 surgeries to have to use crutches I said. Well of course there were plenty of times last semester where the construction made the on campus paratransit take too long and I just didn’t have the time to wait for it. I needed my crutches. I am most likely going to need to use a wheelchair when I get my first job in a hospital. I don’t have the stamina to spend 30ish hours a week on my feet. I prefer to ignore this fact. Why is it always so wrong to use these things but not wrong at all to have orthotics in my shoes? Nobody gives a crap if I take medication. All of my closest friends take medication for something. It doesn’t make me different. On the contrary it makes me fit in more.

How do orthotics enhance my life in an acceptable way, but these things enhance my life in an unacceptable way? Why do I push so hard against having to use something, anything (except orthotics of course)? I wasn’t always so willing to wear orthotics. How did I get won over? Orthotics make me feel good. Left-handed desks and crutches and wheelchairs do not make me feel good. They have good points and bad points. They can decrease discomfort and make me more self-sufficient and independent, but they can also cause discomfort and make me more dependent. I can’t carry anything when I’m using crutches, for example, and that bugs the crap out of me. I’m a glass half empty kind of gal. I tend to fixate on what I don’t like about using something. I can’t think of any bad things about wearing orthotics. I don’t notice the sweat anymore and even if I didn’t wear them, I would still have trouble buying dress shoes. I have wide feet. Pills make me feel good too, that’s what I’m on them for after all. I turn assignments in on time when I take my pills. For a while I thought maybe I didn’t like feeling good. I’ve spent so many years feeling bad—I’m really used to feeling bad. No, I do like feeling good. I turn assignments in on time when I feel good. But you know what? Looking at the last time I felt good, I was pretty glass half full. I would still hate using crutches but I would tell myself why using crutches was OK.

Feeling good takes too much energy. Energy that I don’t have because I have CP. Turning assignments in on time means that I have to do assignments. Being ok with using crutches means that I am going to use crutches, which means that I am going to walk far often. I can’t do feeling good very long. Feeling good is too exhausting. Not doing assignments and not walking far is very obviously not exhausting. Not exhausting is just so much easier to do then exhausting. Yes I’m still tired when I don’t feel good, but tired is not absolutely utterly exhausted. So I don’t take my pills because taking them is just too much for me. Yes, that makes sense. But if (other then being exhausted) I like feeling good better then feeling bad, what am I supposed to do?