A headache

I know when my body tells me to take care of myself better. I have to eat regularly. Sleep on a right schedule, keep hydrated. And yes, I also need my caffeine fix. It happens every few weeks, that between all the planning,  strategizing, staying up and stressing I forget to follow these simple rules and I end up paying for it. If I sleep too long or too little, if I don't eat and drink quickly after getting up I'm ending up with a migraine. And I know at that point over the next few hours it will grow stronger and stronger eventually putting me out of commission for a day or two. It sometimes helps if I grab a meal and nap some more, but a lot of times it's just something I need to get through. Eating, sleeping and relaxing. No big project to get to, no email to write. If it wasn't for the headache the day wouldn't be half bad. I know how it starts. With a piecing pain under my eye that spreads pulsating to my forehead and I feel it in my sinuses. When I was younger I would just power through it. Go out, get some food in me, drink some coffee, I might feel better. But then the pain just grows stronger, it's harder for me to ignore it and focus, I get sleepy, sensitive to light and I'm very uncomfortable. Last time this happened I decided to grab a hot dog and almost dozed off while eating and then couldn't finish it. And I ended up feeling nauseous. I used to be hellbent on not letting it ruin my day, but today I decided to take it easy. I got up late, then my law practice partner called me from Jerusalem and I skipped breakfast. Big mistake. A rookie mistake. I tried sleeping, eating, drinking water, drinking coffee and sleeping some more. Clearly my body wasn't cooperating, so I ordered cheese stix from "Five Star Pizza" and went through my DVR.  I was really hoping to join  my friends for karaoke tonight. Tuesdays and Thursdays are my nights to socialize, have fun and drink. And then I had to sit this one out. There's always next week. The world can wait until I feel better. I guess that's a new notion for me, not having to prove that I'm stronger than this, that the mind always has to win over matter. I hate feeling like this, being grounded, giving in to weaknesses, not being able to do what I planned because of something within me to stop me in my tracks. But I can't fight it. So today, body, you win. Let's make a deal though- Thursday morning I expect to be a 100%.

This is not a diary.

"If you're lonely that you need to pour your heart out, come back home"- said my mom after mentioning she went over some of my posts. I'm neither sad, depressed or lonely, but it got me thinking- is this what people who read them see me as?  How could people, and those closest to me be so wrong at trying to get me? How did ever get so misunderstood? Part of it is of course that my family's English is not as good as mine. They may not be able to catch certain nuisances. But the bigger issue is that they have a very limited glimpse into my life. They live in Poland, I'm in America. I call home typically on the weekends, these days I should say every other week. When I do I don't really want to bore them with every single aspect of my day. I'm more interested to hear what's going on back home. Whatever it is that they miss in trying to figure out how my life is doing they get from here. And my blog is not a diary. I don't post simply because something happened to me and I need to vent. I try to present different aspects of my live with disability. Things that I think about happened to me at some point, yes, these are emotions I felt, but these are not issues on my mind right now, front and center. I try to bring up things that I experience or have experienced, but I see rarely discussed. Most of the time these are features on particular aspects, rather than day to day chronicles. I try to give every post a concept or a theme. A lot of them revisit some experience from my childhood. How I felt and what I remember. Often, I contrast it with a perspective from my adulthood. My life is timeline that I skip back and forth. Many times I think of things to write days in advance. Of course on some occasions I have something strange or mean or funny happen that I just have to share with my readers, that pushes back all the upcoming ideas that I have. The "2 Blonde Girls" from last week is a good example. I've experienced a lot of drunk rudeness earlier that night and then went home and wrote about it. Yes, I was angry and annoyed, but mostly it was meant as a point of discussion about how people behave rather than my feelings and attitudes. That I was angry for an hour matters to me less than being able to show you- this is how certain people behave in context of disability. I try to talk about things that I see as issues. Because the more I talk about how my disability affects me, how I see it, how I see others the more you can understand me. My mom thinks that my blog is depressing. And perhaps she has a point insofar you don't see me talk about a fun night I've had at a bar somewhere, met great people or had an amazing dinner. Maybe I should think of incorporating some lighter stories into it. I certainly don't want you to think that I think about Conductive Education all day or visit establishments looking for missing ramps or bikers blocking wheelchair access. But I like spreading awareness. This blog is something I do three times a week. And sometimes I really don't think I have a good topic to discuss. Sometimes I write about something requested or inspired by others. And sometimes it gets in the way. Right now I'm in the middle of something. Let's call it Project X. You may find it silly, but I can't talk about it yet. I feel I only have one chance to announce it properly and I need to have all my ducks in a row.  For now, rest assured I am not depressed. A man walked up to me tonight, and although I didn't quite catch who he was he patted me on the shoulder and said "I read your blog all the time, you're a good guy". Well then, at least somebody likes it.

Fingerprint me

Scan all your fingers, separately, one by one, three times.. Then roll them. Not too fast, not too slow. Then put your entire hand on the surface. Easy enough, right? When you have a disability all those small task you wouldn't give a second thought become major obstacles. It may sound simple- when I was applying to the Florida Bar I needed to have my fingerprints read into their data base. I think immigration was using the same system. Lord knows, I've had the very same problems because nobody made any provision for people like me. They used a machine connected to the computer that looked like an oversized slide projector. Getting it down so I can reach it was challenge enough. Those things were usually on the table, with a cable too short to put it somewhere else and lower it for me. To even start, one person would have to grab it and hold at angle for me, while other person dealt with my hands. Everything was fine until we got to my spastic right hand. To put it simply- my wrist and fingers get stiff and tense. The more nervous I get, the more it intensifies and I can't control it. The more I can't control it, the longer I'm stuck in front of the machine hoping this time it goes through. And with every attempt I get more nervous, because whatever we're trying, is not working. It's not as simple as putting your fingertips on the glass- you have to do it at the right angle, at the right  speed, pressing at the right moment with the right amount of force. With rolling I had people working the machine turning my fingers for me, side to side, because I couldn't do it. But that's not all. Not only do your images for every finger have to match with each other, but they also need to fit with the capture of all five fingers at once. If we don't get it, we have to do it again. And again. A few times it felt like we've scanned all the fingers, but then it didn't go with the image of the entire hand. More grabbing, more pulling my hand, more moistening my fingerprints for a better read. Thankfully, despite my spasticity I can separate my fingers. But that doesn't help if they get tense I just can't control it. I'd assume people were usually in and out there in ten, maybe fifteen minutes. With me, it was usually an hour, an hour and a half.  And it was something that was getting me worked up even as I was going there. Not only did I have to go get my fingerprints captured for USCIS with every immigrant petition I filed all the way to Jacksonville. Once I had to go back because although we thought we got it right- the system thought my prints were unreadable. The same thing happened with the Florida Bar. And imagine this- with immigration it's their day job, that's all they do. With the Florida Bar the scanner machine was typically in the back of a gas station or in one case, a furniture store. This is something they did for a quick and easy way to supplement their income. Little did they know, but they bared with me for as long as it was needed to get the job done.Same thing happened when I took the exam- they were fingerprinting me, this time in ink, but when it wouldn't produce a proper print, we'd have to do it over. And you tell yourself: just relax your hand, just relax your darn hand, but there is nothing you really can do to turn off your mind and have them do with your hand what they will

2 Blonde Girls

"F... you, I hope you're disabled forever" said one of the two girls who decided to lounge in the wheelchair accessible cabin after I told them that I was waiting for a really long time and this was the only bathroom  at the restaurant I could access.Poor thing, she didn't know, that I have no perspectives at all to ever not be in a wheelchair and that I'm fine with it, as long as there were places and bathrooms I could use. And here I was- about to write off Tuesday night as mostly uneventful. Drinks with a few friends I bumped into at the bar, strangers telling me of their latest great idea that will revolutionize the world and everybody so eager to get me a beverage. It's Tuesday night at The Top- a lot of familiar faces and a bit of a weekly tradition for me. And a fun night, for the most part. People blocking the wheelchair accessible bathroom is not a new thing. And I'm trying to be considerate. After all, we've all had a couple of drinks. I usually say: "Look, I've been waiting for a long time, this is the only place I can go and the regular men's/ladies' room has been free for a while, if I could go there I would". Most of the time people get embarrassed. Some just frankly say it was free, so I got in. But never before had I gotten as much attitude from someone as I did Tuesday night. I always try to use the restroom before I head home, otherwise  I may be in trouble. I don't drive, I don't take the bus or walk. I wheel home. That is a whole upper body workout. As you move around, your muscles get tense and you feel a lot of pressure on your bladder. Quite frankly at that point you hope you make it home in time. I always try to visit the restroom before I leave. I do it way before the establishment closes, because with all the transferring from and to my wheelchair I never know how much time I may need and I hate being rushed. Yet, I was sitting in front of the cabin for a while now, waiting for the person inside it to leave. I've heard voices. I figured she was on her cell phone, clueless that a person was waiting outside. Laughing, screaming- they made me wait quite a while. Sounded like a party.  "A private textroom"- as the doorman often calls it. Finally the door opened, but instead of one girl I saw two. Young, bleached blonde women if I had to guess, college age, possibly in some sorority. It was clear that with their drinks and their laughs they were not in need of a toilet at all, they just wanted some privacy. "For future reference- just use the regular ladies' room". "This is the ladies room" one of them said. "No it's not- it's across the hall"- I explained. "You know, I'm disabled too- one of them continued- I have a plaque and everything" "Me and my father are the only ones in the WORLD who have this". Well, do you need grab bars?- I asked- because this is the only bathroom in the place that has them.  ,"Yes I do"- she said, all the time standing straight and walking just fine.   And even had she had any kind of condition at all, wheelchair accessible bathrooms are not like disability parking spaces. It's not about who needs it more or who is certified as with a disability. She has the option of using  any toilet of her choice. I would if I could, but I'm not physically able to. I can't walk and I can't stand without something to lean on. It's not because I feel special for having a disability. She left me with her final remark and I guess she won't be bothered by her conduct at all. I doubt she will even remember. She walked on steadily towards the bar, an amazing task given all the alcohol she consumed. I was not able to use the restroom as the bar was closing. As I was leaving people were saying I should have had the last word, the last remark, something like, "I will always be in a wheelchair, but you will always be a...". Alcohol makes it hard to think on your feet. I was mostly amazed how vile and mean people get to excuse their own conduct. As I was on my way home I thought of a million good comebacks. But I'm glad I didn't say anything. A street musician who I always meet on the corner asked me as usual how my day was and I told him this story.  "It's her mother"- he summed it up -"This was the best she could do, raising her daughter". And I couldn't help but smile.

Disability envy

I guess we all get used to our disabilities at some point. We all end up learning how to work our bodies, our senses for our advantage, how ever limited in some respects we may be. This is the one life we are given, we better make the most of it. We get familiar with ourselves, we figure out what we can and can't do and how to do certain things differently.  Every disability it seems, comes with a different limitation, and it almost feels like a trade off- some people are able to do one thing but can't do something else and many that I have spoken to get so for the lack of any better word- comfortable with what they have over time, they would not trade it for a different condition. I have Cerebral Palsy. This means that with my extent of my condition  I have control over all of my body, I can use my legs and my arms but all of them are somehow affected. I can sit and I can move, but my posture isn't very good. I can ride around in my wheelchair, but I'm not as fast as I'd like to be. I grab things with my right hand, but it will never be as precise as my left one. I can use my legs to adjust myself, transfer or stand for a bit, but my knees are too spastic for me to walk. At the same time if I wan't to get out of my wheelchair and get on the carpet I can do it easily. Or get up on knees or crawl. If I feel like sitting on my couch if I so desire. And of course I have all my senses. At the same time I'm not as strong or as fast as people with some other disabilities that have to compensate by developing a really strong upper body (although mine really gotten stronger over the years).  One of the questions that I usually get (among other less polite or intimate variants going in the same direction) is "Can you feel your legs" to which I sometimes I say: You just saw me move my foot, did you not? Sometimes I get "Is it painful" to which I say "No my legs are not in pain". I don't mind my disability. But doesn't mean I don't notice it or that it doesn't frequently get in the way. Yes, I suppose it's true that it's easier that I was born with it and it's all I know. But then, growing up in Poland where there were stairs, stairs and more stairs everywhere I was always aware of how limited I was and would always be. How there are people, places I'd never get to see unless somebody takes pity on me and carries me up somewhere struggling with my weight. Just because I was born with it, doesn't mean I don't see how some people react to individuals in wheelchairs, that I don't realize that I live in the world of body-abled people, who run and dance and do many other things I will never get to do, not really. Just because you are "born with it" doesn't mean  there aren't times I don't feel different, that I don't feel like I don't belong. I'm happy with the limited mobility I have- a bit of everything, none of it really that good, you may say. I'm also blessed not to be in any major pain, at least for now.  Do I wish I would sit more straight? Of course I do. But then I know there are people who could do with their bodies and brains as well. I remember how one of my school friends told me when we were kids: "I envy you, I wish I had your smarts". This was maybe 22 years ago and it made me think how we all struggle with something we have. To me studying came effortlessly most of the time and it felt obvious, something that just came to me. I guess it was like getting up and running to him, something he didn't even think of.  And it makes me think even today, how we focus on what we don't have, how we dwell on what we are lacking, rather than applying what we do

Being a human being.

Isn't strange how you seem to be invested so much in your cause that it is all that people see? I bumped into a friend I have known for many years last night at a bar who was with a group of other people. I was not planning to be out that late, but after a brief conversation, I said- why not, to a suggestion that we should step into a bar. A few drinks later my friend told me that I was one of the few people they respected and admired as much. And I thought to myself: What an interesting choice of words. I didn't hear that I was fun or that they were happy to see me. Or that I was fun to be around. that I had a great smile, that I was a sharp dresser or even that they liked me. Yes, I'm a hard worker. During my years at the Klausner Foundation I was sleeping,  eating, breathing Conductive Education. That's how much it mattered for me that people knew what it was.I needed to make it work.If I had to do it myself, I would. Every little blimp, email, offer and idea felt ground breaking to me almost as if I have fused with this concept into one. I will never make that mistake again, but I guess I brought it on myself. But sometimes you want to be seen as more than just a cause you stand behind. You are more than your disability and you have you're entire life's worth of experience to prove it. But sometimes you just get too excited, too involved to get a proper perspective. Have I scared everybody off? Is that all they will me know me as? I don't mind being an activist or what you may call it. I'm first and foremost a human being, not just a poster child, not a cause and not idea. As you get a proper balance in your life, as much you bored your friends in the past with this you want them to see that. You want them to like you, not to be impressed by you, when you're having a drink. And be appreciated just for being around. Changing the world can wait till morning

Picking my battles

Last week I went to the local farmers market and I've decided to take a friend who never went to it with me. An elderly couple looked at my manpurse and then turned to him. "Is he with you"- they asked- "His money looks like it's about to fall out". They were not talking to me, they were talking over me. Like I wasn't even there or as if I were an object or a child. The odd thing was, I'm a few years older than my friend. But of course they didn't know that, they didn't know who we were and why we were there. My friend thought it was funny and to my surprise, I didn't care. A few years ago I would have gotten upset or have said something back, but I just rolled my eyes and rolled on to the next stand. I believe I said :"I'm fine, thank you for your concern".  I could waste a lifetime getting upset over every single thing that happens to me. I can invest a lot of time and energy correcting every single person I meet. Or I can live my life. The thing is, I really don't feel better either way. If I blow off and point it out  to them I make them feel bad. And then I get worked up over nothing. And I'm the angry one. The "unreasonable cripple". If I let it go, then I will never make an impact Often it's just not worth my nerves.  Truth of the matter is, there will always be insensitive people. I'm sure I have been insensitive to others in some scenario I don't remember just last week. It's human to be imperfect. And I'm sure I lose out either way. In situations like these, people most likely don't remember interacting with me the next day, be it when they block the only wheelchair cabin, when they give me money, if they ask me if I'm lost while I'm next to a bus pole. Unless I say something mean or point their erred ways to them they just move on. It's no big thing. To them. Yet, I'm stuck with the aftermath. How should have I behaved? Did I do the right thing? If I'm not firm enough, people don't treat me seriously. Just the other day, I pointed out to my neighbors that they should not let their dogs run loose in the complex, because if something happens they can get sued. I should know, I'm an attorney. Also, they are in breach of their lease. Their reaction was that I'm threatening them. Truth be told, I'd gladly take a case like this and people, dog owners, don't really see what could happen and how they could be liable for something they can easily correct today. But I guess, given the two evils, I'd rather be the guy people stay clear of and are afraid of than dismiss.  Being in a wheelchair I'm not that intimidating if I don't say anything and if I'm not firm enough, it just doesn't get through. But if I lose my cool I loose altogether. Let it go or be the crazy one... I'm much better at picking my battles, what I'm not yet that good at is figuring the right tone for every circumstance. So, that in the end I don't feel like I'm the one defeated.