Saturday, January 30, 2016

Conversations with strangers: When it's more than just saying hi

      I got a lot of interesting feedback a little while ago when I shared a story about something that happened to me. I guess you could say it wasn't particularly unusual, as people exchange pleasantries and have conversations in public all the time. A man was sitting beside me at the bus stop on my way to one of my weekly volunteer positions, and he said hi. I know, SHOCKING, right? But what happened next perhaps was more unexpected.
      He saw all the travel stickers I collect on my wheelchair of different places I've been. He saw one from Abbey Road and asked me if I had indeed been there. I told him I had, and I told him we had local professors in some of the places to guide us around and show us more of the local experiences rather than just tourist attractions.  I told him how much  I love the Beatles, and even though I  wasn't that annoying tourist who  stopped and took a picture at the road, but I enjoyed the experience nevertheless. I told him how horrible the traffic was coming out this way, but today wasn't too bad. He asked me what I do now, and instead of it being like that,  I just mentioned that I'm blogging while looking for full-time work, and I hope to produce some more videos soon. When my response to “do you post every day?” was a chuckle and an enthusiastic “I wish,” he found me here online.  I don't know if he is reading this today, but, to the guy on the D line, hi, and thank you.
      I realize it's kind of ironic that I'm thanking a stranger for having an everyday interaction with me, when the whole point of my blog and some major campaigns in the mainstream news media is to promote inclusion of people with disabilities. And while the message is there, I realize that sometimes it can have an adverse or unwanted effect. So that got me thinking, we should talk about how we do (or don't) talk about disability.
      I have been of the thought personally for a long time that it is okay for curious people to ask questions. I usually don't mind answering them. That said, there should probably be some thought put into how you ask or what you say to a person. Yes, my condition is probably going to come up in conversation, and that's great! But, does the first thing you say when you see me really have to be “What's wrong with you?” ?  I don't think so. A simple “Hi, how are you?” or a comment about the Seahawks getting pummeled 2 weeks ago will do just fine.
     The thing about this that I don't understand is that  awareness campaigns, like this one or this one, while they share my overall message,  seem to make people even more uncomfortable than they usually are about talking to me. They acknowledged me!!  Now what do they do????  It usually starts with “Oh, my grandma had a wheelchair,” or “My sister has XYZ..." or my personal favorite “I really don't want to offend you, but......"  I'm not offended by your curiosity, and if I am you will know about it.  Does that mean I want people to  stop asking questions at all? Absolutely not!  Do I exist to be the Wikipedia page for my disability? No!  Will I answer your question? Yes,  most likely! Is it sometimes nice to have a random interaction with a stranger free of being praised for existing and crappy wheelchair jokes that I've heard 1000 times? You bet!
     And that is why I thank the guy on the bus the other week. Go ahead, ask about disability.... it's not a curse word  (trust me, I know lots of those, too!), but there are also so many other things you can ask about also. Travel, music, movies, books, sports, your destination, the latest meme on the internet, ANYTHING, really.  Disability can be part of the conversation, sure, but there is much more when you are trying to get to know someone, even briefly.
     Bottom line: I know that  none of us interact with every single person we see anyway. If you are going to interact with me, please let it be because you would have done so anyway, not just because you thought it would make me or you feel good because I'm disabled, or because someone told you to  talk to me for no reason. If you're a nice person, that's great, and I appreciate it, and if you don't want to talk to me, that's fine too.
     But, if you do, just put some thought into how we interact and it will make the experience more enjoyable for everybody.

Monday, January 25, 2016

Blurring the Lines, Part Two

Ok, I realized I did Part One and never actually finished the series. So, here goes. Be prepared for two more exciting updates!

First, what actually happened....

For more medical background on the issue, read this.

 I realize that I don't normally share about medical stuff but since I started this series so long ago I should finish it, and also, many interesting thoughts on the subject keep coming.

 As some may know, CP is not a progressive  condition per se, but it can  adversely affect the way that our bodies deal with aging, stress, and multiple other factors. Mainly,  by producing extreme spasticity, or high muscle tone. To illustrate this, I will share a story that happened one day. My brother wanted to play with his new football. He knows that I can't throw well at all, but  I obliged him anyway. Of course, my throw flopped on the floor about a foot in front of me.
"What the heck?!  You throw like a girl. Actually you throw worse than a girl. S (my sister) can throw better than you,” he said.

 Upon hearing this, my dad comes over and puts the ball in his hand. He told him to throw and then proceeded to hold his arm back with as much strength as  my brother's arm could handle.  “ Now try it.”

 My brother protested about how it wasn't fair but he understood. Normally I don't advocate for any kind of simulation, because it's not going to be accurate, but this is the best idea I can think of.

 So, going into this process, most of the major muscles in my entire body felt this way most of the time. It is usually very confusing to explain this to people, as it is not painful, exactly, it is just that this state of not being relaxed feel so normal it doesn't feel like anything. You are used to  your muscles fighting against you every single time.

 After a series of not entirely unpleasant but less than pleasant interactions with my local therapy clinic at the time, in 2013,  they decided that the only way that they would continue providing services was if I agreed to do the trial process for intrathecal baclofen therapy, as described above, more commonly known as the baclofen pump.  Now, I had taken the medicine as a kid in liquid form, and it helped somewhat, but let's just say  I was an extreme space cadet and could not focus at school or on anything else. Where I was growing up, they did not have any specialists who could implant these permanent devices, and, with the serious risks of withdrawal, it was put off for a number of years, until I could decide if I wanted it for myself.

 Well, at this time of interaction with the therapists, I was plenty old enough to decide, and grudgingly agreed to the trial process, as it was temporary only, before receiving the implantation surgery. I was told to expect anything from retaining my normal function and improving function, to falling flat on the floor and not being able to move because all of my muscle tone function would be taken away. The effects are so varied in different patients that no one can say for sure until you do it.  Believe me, my friends knew how many nights I lay awake thinking about this, and sometimes, I still do.

 On testing day, I did as instructed and did not eat or drink. I will say that the actual spinal injection hurt less than putting in the IV for fluids, which they had to do about 3 times, I don't know why. After about an hour, they came back and said “how do you feel?”  I said I felt very strange, but I couldn't explain why. It was just an incredibly still feeling, and my entire body was warm. I would think that this would be because blood is flowing freely and not constricted by tight muscles  or blood vessels.

 And then, the fun part happened. They did all the functional tests and asked me to raise my arms and move my fingers etc.   And  there it was, I was able to do it with absolutely no resistance from my arm whatsoever. I could flip my left hand completely over flat and hold something in both hands, something that I can only do on my good side on a daily basis. This was amazing! As long as I felt fine for the rest of the day and my function didn't actually decrease, I would be a great candidate, and this would change my life!

After several more hours of observation, which included me finally being able to get out of bed (which went way better than expected), I was told I should go home and take my medicine as directed that night, as I usually do. My other aide put me in her truck, which  she remarked was so easy to do because I bent, and we were going to head off to Costco to go grocery shopping, but first, she made a special stop at Ezell's  fried chicken for the occasion.

 The thing is, I don't actually remember eating the fried chicken because I was so tired I couldn't sit up in the car or keep my eyes open.  When she finally woke me up so we could get out of the car, she said I was a complete dead weight and asked me if I was drunk, because she couldn't understand my words, which are usually pretty clear unless I'm excited.

 “No,” I mumbled. “This would be  the baclofen hangover. It does this, every single time.” It felt like somebody had punched me in the face and knocked all the wind out of me. The doctors assured me that the side effects would wear off in 2-3 hours.  So we decided that after that I would go home and sleep it off because that was all I had the energy to do,  in the morning  I would be good to go!

 Except I wasn't. This feeling of drunkenness lasted more than 24 hours, at which point I called the doctor's office. They said it was probably because I had taken my medication as instructed. But also probably because I am hypersensitive to the dosages of this medication. All I knew was that I was glad it was summer because if I had to be writing any papers or working right then, forgetaboutit! I was somewhat   fortunate and  unfortunate enough to have my second level ASL evaluation two days later, but at that point I was unsure if I could keep my eyes open. Luckily, we all know how that turned out!

 Turned it out that upon my follow-up about a week later, there would be more complications to receiving the procedure as originally planned, so I put it off, hoping that someday it might be available at that same facility with new doctors, at a time when I was not working and was free to experiment with this. But that's for another post, after all it has been two years and I still haven't made my decision.

 Stay tuned for Part Three........

 (Image: me smiling from a hospital bed after the spinal injection trial began, July 2013. I'm wearing a hospital gown and my left hand is bandaged from being attached to an IV pole. My right hand features the 17 jelly bracelets that I once wore in various colors. I am holding my cell phone and a lunch menu. )

Wednesday, January 20, 2016

Homeless in London

      A lot of times, we end up talking about social class, income  inequality and gentrification, especially here in Seattle, where there are constant tech markets and others, popping up and literally no place to house them.
      I don't know if this is an observation of me being white, or disabled, or both, but I tend to get approached a lot by homeless people when I am out and about on the streets. And, as there are increasingly more of them, these interactions happen more and more.  I am not one to carry around physical cash, and so usually I don't have anything to offer people right away, but I often feel guilty. Perhaps it is this combined with my own desire to protect myself as an easy target while out alone.
     The thing about traveling to another country that is well-developed, a world power, and constantly being colonized or jostled around is that it is not much different in London. However, there is a different perspective somewhat on how they handle the homeless situation. And what study of contemporary British culture would be complete without putting this directly in front of your face?
 Or so said our Contemporary Britain professor for the seven years  leading up to that point.  He had met  a homeless woman and her dog in his travels, and every term thereafter, invited her to speak to his class about what it was like to be on the streets.  The difference is, that while here in the US, the laws about loitering and property damage, in Britain it is actually illegal to ask for money  on the streets  in any situation, as it is in most of Europe, and the police may repossess anything that they assumed to have been given to a person as any kind of donation. I remember this woman said that her biggest obstacle was that her dog, her only companion after leaving a long-term partner and before that a very violent situation, had a lot of health problems and was not allowed in any shelter or housing space. Rather than give up the dog, she put anything she was given first to her dog, and then to herself. As of this program, she had been  through a program aiming to clean up the streets for the 2012 London Olympics, almost without warning. She had tried to find employment in vain, despite being well-educated, because she didn't have an address, and then,  of course, there was the dog. She often talked about getting little sleep, and being awake before the police came to chase them away. She said that she had often slept in accessible bathrooms, which were usually locked somehow. I admit that this made my privileged self cringe a little, but it made a lot of sense, often they were the nicest and cleanest places in the area.
       The whole point of this is that, as I go about my daily errands, this could be the story of any one of the people here. Despite the difference in law to some extent, the same catch-22 exists. And,  the fact that, for job searching me, this could often be too close to reality to worry about other people. For years, I swore I would never give money to random people, instead choosing to volunteer my time in other ways where people can benefit, such as the food bank. But stories like that of this woman and her dog often make me wonder why I didn't offer to buy a cup of coffee  for that guy on the corner. While I may not have cash, in a few weeks when I have the means to do so, I will do something else. And for that, I thank her, and her dog too.

I don't think this is what Rick Steves meant when he said "Through the Back Door"

     It was the evening before our last play, which would turn out to be a serial killer love triangle vampire drama  with a set that would later be used by Lady Gaga in her recent Oscar  performance  We were looking for dinner as usual, and I was on the hunt for some of the best Mexican food in London.  I forget how it happened, but somehow we decided that The Rainforest Café was our best option.  My friend  went inside to ask about accessibility, because the entrances were very confusing. They told us that their lift (elevator) was out, but assured us  that there was another way to get in the restaurant. So, after about 10 minutes, the waiter apologized and came out of the side door. They explained that they actually   freight entrance to gain access to the secondary elevator. We went through a maze of  hallways clogged with cleaning supplies and various instruments that made it look like the back stage prop room of an urban musical, or as  my friend would later aptly describe “the set of an edgy urban horror movie.” Needless to say, this “accessible entrance” was actually so inaccessible because several doors and important pieces of equipment had to be moved out of the way by staff members, and it looked scary enough that this was questionable. Now, I've been through some interesting entrances in my day, and it usually adds character to the place, but it was only about to get worse from here.
      About 10 minutes later, we did manage to end up in the downstairs floor of the rainforest Café. Now, this was the first time I had ever eaten at the Rainforest Café. All I knew about was the kids cups and the store full of giant stuffed animals on the first floor. I was completely unaware of the sound effects and giant animal costumes or statues that might occur. Anyone who knows me knows that I still (yes, really) have an irrational fear of  mascots or people in large costumes touching me, or basically getting within five feet. I can handle this, but it still weirds me out, stemming back from when 5-year-old me  thought Donald Duck was a stalker at Disney World.
      So anyway, there were some very lifelike gorilla  animated creatures in the corner of this basement space, and here we were, sitting, eating  our nachos all alone, which could have used more cheese, by the way. And, suddenly,  thunder started booming and lightning flashed throughout the rainforest scene, accompanied by a cacophony of shrieking animal sounds. Anybody who knows anything about CP knows that one thing that we never get rid of is called the Moro, or startle reflex. It is common in babies up to 3 months old, I believe, and is usually grown out of. In my case, however, it caused me to spaz out of my chair and utter a few choice words then, and about every  10 minutes thereafter, even when I knew it was coming. I also have issues with suddenly switching strobe lights (i.e. "lightning"). Maybe this is why I don't go clubbing! Anyway, these two  elements combined with the straight up creepy factor of a plastic gorilla staring you down while eating do not lead either of us to recommend this place for people who have trouble with loud noises, seizures, PTSD, dizziness, or creepy plastic figurines. Although the food was decent, it was also the most expensive meal for two  we ate on the whole entire trip.
     I would like to say that this was the weirdest element of our night, but I would have to say the sadist pedophile vampire love drama was still even creepier. What a night that was!