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

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

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

Monday, December 31, 2007

The Stare & Wisper

Yesterday I experianced something that I have experianced many times before, and that I will continue to experiance for the rest of my life. Many of you have shared this experiance as well. I went grocery shopping because it is one of my favorite things to do and it is one of my mom's least favorite things to do. I have 2 wheelchairs, crutches, and AFOs, but I do not use them most days, including yesterday. I left my cart at the end of the isle and walked towards the apples. A very little girl (small enough to still fit in the front of the shopping cart) was staring at me. I am in dire need of botox, so my walking even feels awkward to me--of course she was going to stare. Usually with little kids I smile, give a small wave, and say hi, but I was frazzled and didn't take the two seconds to do so. As I turned to walk back to my cart the little girl turned towards her mother and said at a normal volume "Why is she walking like that? Why does she walk like that?" I was a little ways away from them so I did not hear the answer; it was said at a wisper.

This brought to my attention a problem I have been having for awhile. I'm hopeing other disaboomers will be able to help me with it, I have been in school working towards being certified as a child life specialist. I will be working with children in who are in the hospital, helping with their psychosocial needs. It is almost impossible to become certified as a child life specialist without a plethera of volunteer hours. I have been volunteering for 2.5 years at different hospitals, depending where I am living at the time. There is an issue that I have been having that for some reason I have not addressed with either a supervisor or my advisor at school. By the time I would be able to speak with them, I've almost forgotten about it.

The hospital that I have done most of my volunteer hours at is a speciality hospital. They are a pediatric rehab hospital meaning that the inpatients I work with were either born with developmental disabilities and are there for intense therapy following "routine" orthopedic surgeries or were in accidents and were transfered there from shock trauma, also for intense therapy. There are other cases, but that's the gist of it. My problem is when these kids turn to me and ask me why I walk funny. At first I found it odd that any kid that was there would need to ask, but it's happened a lot, so I've gotten over that. Because of privacy laws I am not allowed to know why any of the kids are there, but once even a girl who very ovbiously has CP asked me why I was walking like that (I found that VERY odd). Somehow I was apprehensive about using the words cerebral palsy, as I was affraid it would be crossing a line or something, but then later regretted the choice. If you have an oppinion please share.

What I'm having a problem with is trying to come up with an appropriate answer without much of a pause. I don't want there to be a pause where the kid feels awkward and then feels ashamed about asking. I'd rather they ask then stare (people in general need to get that in their head-- staring is rude, asking politely is not). I've done A LOT of advocacy work over the last 7.5 years speaking to kids as young as 9 all the way up to professional groups where some were in their 60s. Bigger kids aren't a problem. But what about when a 3 or 4 year old asks me why I walk funny? I don't really have experiance with little kids. How much can they comprehend? If I simply say "I have cerebral palsy" they are going to look at me funny. I have tried "I was born this way/like this" and I feel like I am being too short with them, like I am not answering the question. My other problem is with patients with cognitive delays. Say they look 11 (or even 17) but have a cognitive age of 6. I feel like it's taking me too long to adjust for that in my head, comming back to the awkward pause.

I hope you all can help and am looking foward to receiving the replys to this post. Somehow I feel like I will get a better response from those who live this experiance daily, rather than those I work with who are only spectators into our lives.

Saturday, December 29, 2007

I Hate my Brain

I was trying really hard to keep this blog strictly about serious disability issues, not about me whining and b*tching (who wants to read that), but I'm having sort of a hard time right now and I don't have an available shrink at the moment (on vacation until after New Years and I'm also an hour away from her right now) and I need to get this off my chest right now. That and I wanted to blog tonight about creature discomforts but both Terrible Palsy and eureka street have already blogged about the campaign. I kind of feel like yet another blog entry (as I am sure that there are even more out in cyberland that I have not seen) would be pointless and overkill. Besides, I just gave it the obligatory plug, so I feel good knowing that I have done my duty to get the word out.

And now to the new topic of my blog post for the week...

Do you remember that commercial from the mid-90's where there's this teen with a frying pan and an egg and she says "this is your brain." Then she smashes the egg really hard with the frying pan and goes "this is your brain on drugs." I seriously do not know how that commercial made its way from my subconscious back into the realm of my conscious, but I would like to replace the words with "this is a normal brain. This is a brain with a mood disorder." I like that I know that I am bipolar, because now I can do something about it, but right now I wish that I wasn't. Right now I wish that I had a stable brain. Right now it is 1:30 in the morning and I am wired (again) and all I want to do is go to sleep like a normal person at normal person hours. That is my Christmas Wish (can Jews have Christmas wishes? I've never heard of a Chanukah wish, so I think I will borrow from another religion... hey, whatever works at this point). I'm not sure the last time I slept normal. The end of Sept, beginning of Oct probably. Mid-Oct I went manic and was exhausted from doing so much, but then would surprisingly wake up after less hours then I need on a not exhausting day. Early Nov I crashed and was so depressed I couldn't get out of bed. It was Thanksgiving weekend when I started going to bed really late and then consequently getting up really late as well. I'm still doing that and I have a 9am class next semester. Can you say PROBLEM? It's the only time it is given. I have what is known as a phase shift. I sleep fine and I sleep a regular amount when I sleep, but when (as in what time of day, not how often) is the key word. This is not the only reason I hate my brain, but it is the #1 reason at the moment.

I am just all over the place right now. I am freaking rapid cycleing and I feel sorry for everyone I am close with. I feel sorry for them because I am just impossible to live with right now. I'm starting to annoy myself, and that is when you know things are bad--when you are getting to yourself. You can't live with me because either I am depressed and irritable and snapping at everyone and everything or I am manic and talking a mile a minute 24/7 and driving people crazy, which is what I am doing at the moment. I came home and my mom was out of town. She came home and was here for only 18 hours when I got "I want to kill you, I can't stand you, and I'm about to send you back to Baltimore."

I was trying to figure out why all of a sudden I came home and felt so much better than I've been feeling. Was it a) because I just doubled the dose of my new medication? No, that couldn't be it. It's still very low. Or could it be b) that I'm home now and I do LOVE my house. I love my house, but I just don't think my house could make me feel this good. No it's because I wasn't taking my old medication for the last 3 weeks and then I came home and started taking it again because I am just starting to get on a normal sleep schedule and now I'm up at the right time to take it. I didn't believe my therapist that it was making me manic. I believe that antidepressants can make people manic in general, but with me it takes just 1 pill apparently. I don't see how it could happen this fast, but as this is the second time in the last 3 months, I am going to have to concede that maybe she really does know what she's doing.

The benefit to this is now I know how to make myself manic on cue. I told my psychiatrist that I wanted her to make me manic, but she doesn't think that that's a good idea. I'm going to have to disagree. It is very helpful when I have a big paper due or something like that. I also really like manic Cheryl. Manic Cheryl gets things done and manages her time. Now I know how to do this myself, so I don't need someone else to do it for me. If only this was the right time to be manic. I don't have any big papers due or anything like that. It's after finals. I have 5 more weeks of intersession to do nothing, which is a waste of manicness if you ask me. Anyone have any ideas of what I can do with this? I might as well use it to my advantage.

Wednesday, December 26, 2007

Label Jars?

I'm home alone with nothing to do (other then trying to locate the spare pair of sneekers I keep here), so I thought I would write an early blog post.

Label Jars, Not People

The above picture appeared both on the slide for the final Jeopardy question of the Disability Jeopardy that I made for my workshop and as my facebook picture for close to two months. I almost didn't put it there and I'm still not sure why I did, because I absolutely do not agree with that statement. Well let me change that. I do agree with it, but only to a degree. I agree with it to the degree that if anyone ever says "people with CP (or insert other disability here) can't..." I am going to beat them up. CP is so variable that there is absolutely no way to make a blanket statement like that. What someone with CP can and cannot do really needs to be decided on a case by case basis. I'm sure that the doctor who diagnosed me never in her wildest dreams ever thought I would go to college. At 22 I already have an AA degree and am working on my BS in family studies. I have one friend with CP who is in grad school, another who is graduating in 2 weeks with an MS in speech pathology, and know of another blogger Dave with CP who is in college. On the other hand, a friend of mine is currently working as a part time PCA for a girl with CP who needs major assistance, is nonverbal, and is significantly cognitively impaired. But we call it the same thing (I've been wondering about that).

Where I do not agree with that statement is when parents will not get their kids tested or evaluated because they think that the label of a disability or disease will do them more harm than good. I had a friend freshman year whose mom always suspected that something was up (since like the 1st or 2nd grade) and finally broke down and got her tested in the 11th grade. Turns out that she has dyslexia. But she went around for 11 years before that having a negative self-concept of herself and thinking she was stupid. Guess what she's doing now? We don't talk anymore, but according to her facebook she's in grad school. I used to know this man who had mild CP as a child (now a full time wheelchair user) who's parents just told him he was clumsy. I kind of get that only because he's about 60 now, but he did not find out until he was an adult.

I want to go on the record as stating that I fully support the use of labeling when labeling is used correctly. How are you supposed to help someone with an issue if they don't even know what that issue is? I am so glad that I finally found somebody who was like, you know what? I think your bipolar. Why? Because I got my meds switched a month ago and I think they are finally starting to work and now maybe I can start to have a transcript with some sort of consistency. Before that I was just so frustrated at having to take classes over when I knew that I could do it. I can handle college level work. I had one semester where I got a 3.83 (I now realize I was manic that whole semester) and this last semester I had to drop my classes because half way through I could no longer get out of bed. Every previous attempt at trying to figure out why I was sort of bouncing back and forth got me nowhere. If I did not have the "label" of bipolar I would just be stuck and mad at myself for the rest of my life. Now I can start working on developing a plan for success instead of beating myself up.

I do not support using a label as an excuse, ie like me saying something like "I'm going to make you do my laundry because I have CP and it's too hard to carry my dirty clothes to the washing machine." Seriously, that's a bunch of bull. I walk and I have decent enough motor skills to be able to figure out how to get my laundry from point A to point B. And if I couldn't I could call my old OT and she would come up with something in 5mins or less.

But where labels really help me is in giving me a sense of validation and an explanation / reason. Take for example, the gym. Now every person should do some sort of exercise on a regular basis disability or not, but most people don't. If I were to not go to the gym eventually I would not be able to walk. As I said in a post over in the forums, I did not spend my childhood in the hospital so that I would not be able to walk as an adult. It takes as little as a month of sitting around for me to start falling frequently. So I go to the gym because I have CP. If some doctor told me to go to the gym just because I would be like "yeah, uh huh... no."

I would really like to have some sort of conclusion to wrap this whole thing up, but I do not, so I am going to throw it out to all of you in cyberland. What do you think about the issue of labeling? Do you agree with me or not? Please comment.

Saturday, December 22, 2007

What Does Bowling Have in Common with Art?

I have CP. In addition to the fact that I can't walk fast and that people can hear me coming from a mile away because I'm so heavy on my feet, or the fact that I seem to be incapable of eating like a grown up person being that I'm usually walking around with some leftovers on my clothes (right now more than some because I stupidly decided to eat macaroni on the couch and I know better) I also can't see so well. It's somewhat of a curious problem in that I do not need glasses. My eyes are perfect. It's my brain that's caused me not to have any depth perception. I do not have any concept of how long 2in is or what 3c of water looks like in a pot. My brain won't let me. I also cannot tell time and I am 22 years old. If a clock has all 12 numbers and all of the ticks in between I'm pretty good, but take away the ticks and I'm sunk. Where is the hand pointing? I LOVE digital clocks. So there are things I just cannot do, like catch or throw a ball (mostly) or bowling. I suck at bowling. I think my highest score is a 54. But somehow I really enjoy bowling. Why? When I go bowling I step up to the lane with every intention of getting a gutter ball. I never ever expect to knock down even 1 pin. So when every couple of frames my ball does manage to make contact I'm ecstatic. It's a great endorphin rush.

So what does any of this have to do with art? Well... I suck at art too. I hate art because I can't do art. I can't do art because people expect me to be able to have skills like perspective and the ability to look at something and copy it exactly or to glue things onto a poster straight. I have compensated for my lack of ability in that area by taking theatre classes to fulfill art credits and microsoft office classes to fulfill tech credits (me+power tools=BAD idea) so that I can steal other people's clipart and make kick ass powerpoints for presentations instead of posters and awesome flyers and brochures for projects that I am involved in.

Then this past summer I called my mom and begged her to pay for me to take Intro to Art Therapy in summer school for fun. It was the first time the class was being offered and there was no guarantee that it was ever going to be offered again. This might be my only shot. I knew who was teaching it and I'm very interested in alternative methods for pain management. 3 weeks before the first class I received the following email "If time permits, we will create art during our first class period. Please bring the following items: crayons, markers or colored pencils, glue or tape, scissors and a photo of you that you don't mind cutting and/or pasting." One single word stuck out at me and I went into a panic. OMG I did not think this through before I signed up for this class. What did I think I was doing taking it? She wants me to WHAT??? SCISSORS? I don't do scissors. I suck at scissors. Then I calmed down. This was art therapy for family studies majors. Not art for fine art majors. No need to panic... I had every reason to be confidant that she would be reasonable, unlike a past traumatic art teacher I'd had for 2 years.

This class was the single most amazing class I've taken in college. Tied for second are parenting class and small group dynamics. What I've realized I've done was to take my outlook on bowling and transfer it to art. So what if I will never bowl a 200? It can still be fun. So, my art will never hang in a professional gallery. So what? Does that mean that I cannot enjoy the process of making it, or that looking at the outcome cannot still make me happy. This makes me gag, because I have heard it so much, but art is not about the outcome, it is about the process.

The last 2 months for me have been HARD. I planned the most amazing disability awareness workshop as an independent study, and then I lost it. Completely crashed. Stopped going to class b/c I couldn't get out of bed. Then I've been sleeping ok, but at the wrong time. It's 1:30 AM and I'm completely wired right now. But I'll sleep til 3pm whenever it is that I do sleep. So I still couldn't get out of bed to go to class. I had to withdraw from classes. Ws are better than Fs. I was diagnosed with type II bipolar. Finally after 7 years someone agrees that there is something not so right going on in my head. But it is absolutely incredible what you can do if you just open up your mind, let your guard down and just are. I've created some of my most favorite pieces of art during the time that I have not been sleeping.

butterflies, half in night and half in day

This 1st piece is entitled The Two Extremes of Me. It was not supposed to look like this. The entire circle was supposed to be filled with butterflies. But after I drew the 1st 5 I realized that I had drawn them too small and that I would have to draw more butterflies then I wanted; it would look too cluttered. So then what color blue do I use for the sky? What if I use both blues? Oh, that would look cool... Not only is the night side depressed me and the day side manic me, but I realized the butterflies kinda represent a 5 point likert scale. Rate my mood on a 1-5. Goal: maintain a 3, or a pink butterfly. And slightly off topic, what is the white blob on the day side? No one has gotten it yet. No it is not a snowman, casper, or a lamb. Can anyone get it?

circle with yellow circle in the middle with multicolored squiggly lines coming off of it

This next piece is called bloodshot eyeball. I started it with the specific intention that I was going to draw something that didn't look like anything and see what came out. Interesting that this is what came out on my 2nd week of not sleeping.

sunrise, grass and a path to nowhere

The last piece, done around 4:30 in the morning the following week was also supposed to not look like anything at all. I thought, wouldn't it be interesting since I am obviously going to be up for sunrise to do something kind of abstract that looks like sunrise. But well, my visual perception is off and I drew my stripes too small and I had no more sunrisey colors and I didn't want to repeat. So I thought, ok, I'll make the rest grass. But then the grass looked so empty like it was missing something. So I drew a path--a path to nowhere. A path to nowhere at a time when I thought my life was going nowhere. When I thought I had no purpose and I was just kind of taking up space.

I never make new years resolutions. I think they're stupid. But I am going to make one right now. I am going to make it a goal to work on applying my bowling outlook to the rest of my life. I need to open my mind. I need to let go. I need to go with the flow. Because that's when I do my best work. So what if it is going to take me 6 years to graduate? I'll still graduate. So what if I have to take less classes in the spring? It's what's best for me right now. So my gpa is a little low. It will go back up. I will get into grad school. I will be ok. So I can't hit as many pins as my friends. I can still hit pins. I can do this. I can...

Saturday, December 15, 2007

What Does Disability Mean to Me?

For my first real post I am going to copy and paste an essay I wrote this past July, seemingly out of nowhere. I'm currently finishing up an independent study where I spent a year planning a disability awareness workshop for the Department of Family Studies & Community Development at Towson University (isn't that a mouthful), Disability & the Human Service Worker. I had been doing a lot of reading and thinking about ableism so that I would feel competent about being in charge of this HUGE undertaking. And then this just came out...

I have shown it to quite a few people already and have gotten such varied responses as "it's too anxity" and someone else emailed and told me they appreciated the humor. I know it's more than a bit long, but if you can get through the whole thing, I'm curious to hear what you think of it.

I was getting ready to get in the shower when a seemingly random train of thought interrupted the mindless spacing out I engage in several times a day. I think I like myself better (at least somewhat). I think I’m more confident, more self-assured and more self-aware. I think, at least for the moment, it doesn’t bother me that after 6.5 surgeries (having my hammer toes straightened wasn’t real surgery) I’m going to have to bring my crutches with me when I go into the city on Friday with my friends.

Why? I think I have a better sense of where I come from. Every person has a culture. Even if your ancestors came to America on the Mayflower, you have that. Every culture has a heritage, symbols, customs. Children are bathed in their culture from the moment they are born. Our parents can’t help it; it’s usually so ingrained that it’s second nature. You may not know why you do some of the things you do, but if you go back a few generations a seemly frivolous habit may have used to carry a quite serious connotation.

What happens when you grow up in an environment completely devoid of your culture? You grow up lost—without a strong sense of self. With no one to look up to, to aspire to, to emulate, you try to emulate those in the dominant culture that surrounds you. It doesn’t work. It’s like a square peg trying to fit into a round hole. Trying to find your own way, with no one like you to guide you, is like climbing Mt. Everest. A select few manage to come out unscathed, but many others die horrible deaths—in this case the death of their sense of self. For many, it seems so unattainable that they just give up; they never even try.

I grew up with a very strong sense of what it meant to be Jewish. I went to preschool at my shul; I went to a Jewish camp for 6 summers, to Hebrew School for 12 years. I was the co-president of my high school youth group for 3 years and still work for them on and off whenever they need an extra hand. For the last 9 years my mom has worked for my shul. For the last 3 years she’s taught Hebrew school. Even if I wanted to deny that I was Jewish (which I never would) I couldn’t. It would be too hard to escape.

But my Jewish heritage isn’t my dominant culture. It’s not what I’m judged against at first glance. If I didn’t want someone to know that I’m Jewish then they’d never have to, I just wouldn’t tell them. But, um, deny the cerebral palsy? Virtually impossible. I’ve traveled halfway across the country and had the best medical interventions money can buy, but the waddle is still too obvious. And the 29 or so scars I’ve got? I’m not about to cover them all up when the heat index is over 100. “What happened to your knees?” I get often enough. My rectus femorus transfer scars are my most prominent.

“Nothing,” I say to avoid the question. It’s not a lie. It’s not my knees that are messed up after all. It’s my brain.

Very few people know what it’s like to be me. There have been people who have traveled through my life very closely with me, like my mom, but at the end of the day, no one stares at her. She can drive, she can use a regular can opener, she can get up from the middle of the floor like it’s the easiest thing in the world. I can’t emulate her. So I’ve been lost for years. I used to deny my disability. If I wasn’t around other people with disabilities (the special ed kids) then maybe people wouldn’t notice? Foolish thoughts, but I was 7. In high school I directed my anger at it. I didn’t have any friends because of my disability. I don’t have a boyfriend because people are scared of me. I couldn’t get rid of it; I realized I couldn’t deny it anymore, but there was no one around to teach me how to embrace it. So I hid on the couch and watched tons of TV.

Most of what’s above didn’t come to me until I put my fingers to the keys, so to speak. It just poured out amazingly like a tsunami out of nowhere. What came next in my train of thought was, what is disability? If it is my culture like I am proposing, then what does it mean to me? Everyone attaches their own meanings to their culture. Ask 2 Jews what it means to be Jewish and you’ll get 2 completely different answers. Ask 2,000 Jews and you’ll get 2,000 answers. Well, 3 things came to mind. They’re not in order of importance, being that I don’t know what that order would be, but rather in the order that they popped into my head as I was in the shower.

Disability means being creative. It means figuring out how to take my knee immobilizers off after my dad put me to bed, even though the straps were too far away for me to reach. Of course I got caught more times then not, I was 5, but I give myself an A for effort. (For the life of me I couldn’t figure out how to sleep unless I was all curled up.) It means tricking people into believing that I didn’t know how to walk up stairs (I was 4) or that I couldn’t walk without holding their hand (I was 6) even when I could. I call those creative solutions for doing something easier. It means figuring out when the lift is broken that a mounting block can be used to help climb up to the even higher trunk, because mounting blocks are still WAY too low to mount a horse from. It means realizing that I have to take my crutches to class because I’ve decided to walk and I’m running late and the quickest way to get to the Center for the Arts from Millennium is to jay walk. The only problem? They don’t put curb cuts in convenient places to jay walk and I don’t do curbs. Well, I do with crutches.

Disability means being a fighter. There is the more obvious fighting, like fighting to go to your neighborhood school or fighting with insurance to get more physical therapy visits, but then there is also the ever present fighting with yourself. The guilt over not going to the gym that turns into the worry that 6.5 surgeries are going to be for nothing if I don’t get off my butt, which then eventually turns into dragging myself to Burdick gym. You would think the fight would end there, but every so often I get down on myself and feel extreme bitterness about the fact that I have to spend 4hrs at the gym every week. Yeah it’s great that I can now do 175 crunches, that today, for the first time, I did 35 push-ups and when I started I could barely do 10. It’s great that at my best I could run a 13:20min mile (right now it’s about 14mins) when 5.5 years ago my mom swore to me I’d never break 20mins. But none of the other gym rats I see at the gym all the time are there because they have to, because they’ll become completely dependent on a wheelchair if they don’t. They’re there because they want to. And that’s a big difference.

Lastly, disability means being resourceful. It means knowing everyone, and therefore by extension everything. It means never burning your bridges because I never thought that I’d need my old Occupational Therapist, whom I haven’t seen (professionally) since I was 9, to help explain to a very ignorant 9th grade science teacher just why it is almost impossible to do graphs. It means knowing that I am never told about 90% of the services I’m entitled to (because none of those services are funded) but also that because I know absolutely everyone, all I have to do is start asking around and eventually someone will get to the bottom of it and come back to me with the answer that I need. It also means knowing that no one else is told about 90% of the services that they are entitled to either, so I have to keep an ear out to save someone a lot of trouble if I already know where to send them. It’s the least I can do.

What does any of this have to do with me liking myself better? Well I still don’t have anybody to emulate, but I think I am somehow managing to gain a sense of self regardless. Maybe I’ll come off Mt Everest alive (it’s been touch and go if you catch my drift). Maybe also, (I hope) I’m becoming someone other people want to emulate, and that’s a pretty cool thought to ponder.

Test Post

This being my 1st ever blog post, I'm just trying to figure out what this looks like when I post it. If any veteran blog posters have tips for me I welcome them. If you want to learn more about me, click the about section. What I hope is to have a new post up every Saturday. We'll see how that goes...

Me in a black sweater with a cute smile

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