March 03, 2007 at 05:30 PM EST
Monday, July 2, 2007, 07:49 AM
I have this thing about eating in restaurants. I never like ordering the exact same thing as someone else. It upsets my sensibilities somehow. Strange, because when I eat at home I always have the same meal as everyone else. There has never been meatloaf for my dad, salmon for my mom, spaghetti with meatballs for me, and chicken fingers for Danielle. That would be ridiculous. So what's the difference with restaurants?
Anna-Maija and I had lunch and dinner together yesterday. We had the same meal each time. Yesterday was rough.
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February 05, 2007 at 12:12 PM EST
Monday, February 5, 2007, 01:24 PM
This is another essay that I did for my writing class. The assignment was to write about place.
What I hate about it is that I feel a sort of affection for that room. It's not like I look back fondly on my days in rehab but at the same time there's a sense of nostalgia attached to the hospital. I returned to the Shepherd Center in Atlanta almost a year after I was first injured and when I passed by my old room I almost wanted to go in and see who was occupying my bed like a sophomore college student would want to know who was occupying his dorm room the semester after his freshman year. I didn't go in because the situation had so much potential to go wrong and I had no idea what would happen to my emotions if I saw it again.
It was the best bed in the hospital to have. Most of the rooms had four people in them and mine was only a double. The bed spaces were separated by a curtain and my side of the curtain had a window and about 50% more space. It wasn't fair to the two roommates that I had during my stay, but it wasn't up to me so I couldn't apologize for it. I had a Bureau with my clothes in it, the bed, a hospital table, a television that I never watched, and a window ledge that was big enough for all of the cards and balloons and flowers that people sent to me. My view out the window was of beautiful trees that were in bloom with purple flowers on them and the garden of the hospital that was only two floors down. I was closest to the nurse's station and closest to the elevators and the rehab gym where I had my therapy sessions. It was also the easiest to direct visitors to; the first room on the right.
I spent almost the entirety of my first two months post injury looking up at ceilings. Either from a bed or from an electric powered chair that was tilted backwards (for a long time, I couldn't sustain a high enough blood pressure to sit upright and keep from passing out) I got to know ceilings very well. One therapist years before I showed up on the scene taught a painting class to get her patients who started using their arms again to develop coordination and had them paint butterflies on the ceiling panels. Above my bed there were two butterflies. Other patients had more and a few unlucky souls didn't have any. They were in my line of vision constantly. I swear I don't suffer from obsessive-compulsive tendencies but I got sick and tired of looking at those fucking butterflies! Not because they were always there, but because whoever painted them did very shoddy, uneven work. I know it was made by someone who could probably barely use his arms but I couldn't help getting agitated by the paint overlapping and the pattern being about as non-symmetrical as one can get.
Most of my initial, explosive physical developments happened in that room as opposed to in the gym. I couldn't move much of anything below my lips for almost 3 weeks. Gradually I could shrug my shoulders but really nothing more. One morning I woke up in bed and my mother had already made it to the hospital and was getting ready to feed me my breakfast. All of a sudden I realized I was able to lift my arms below the elbow off of the bed almost 2 whole inches. My biceps had kicked in. A few weeks later, while lying in bed at night, I all of a sudden was able to pull back my left wrist. Even before all of that happened I was in my room when my doctor told me that I could take my neck brace off. Try chewing without being able to open your jaw all the way or sleeping without turning your neck and you'll become very irritable very fast.
I always had the curtain closed unless there were a bunch of people in the room. I knew I had the best nurse’s aide on the floor when she came around the curtain one morning early on and literally spun into the room. She was fun. When I picture my doctor, whom I hated, I picture him standing at the foot of the bed with his hands folded as they always were, neatly just below his belly, giving me the same god damn answer he gave to every single god damn question I asked him, "Well, that's sometimes a result of a spinal cord injury." Obviously it's a result of my fucking injury! I need something more specific here!
Why the hell would I enjoy this room?
Actually, I know why. It's funny, I remember all of the terrible, horrific experiences that I've had but for some reason the truly incredible experiences are stronger in my memory. I had so many visitors see me in that room and so many strangers come to give support. Some of those strangers became great friends to me and my family. Considering that I was in Atlanta, Georgia of all places the amount of friends that made the trip down is staggering. One girl came everyday. Every single day.
We had only been going out for three weeks before I hit my head. She even saw it happen. Through a round of crazy circumstances she was able to stay in Atlanta for weeks after the summer was over. Long story. How in gods name were we able to build a relationship in circumstances like that? I had lost 30 pounds, was ghostly pale, had a neck brace on, couldn't move anything, got around in a gargantuan mechanized wheelchair that I maneuvered by sucking and blowing on a straw, and we were just two people who were really into each other.
The scariest fear of all of the shit that comes with this injury is that you won't be able to have normal relationships. No one will be able to love you and see you just as a person instead of a guy in a wheelchair. She wiped that fear away as if it was never present. There was one thing she did that truly told me that things could be okay: she got in bed with me.
I don't mean sex--get your mind out of the gutter! That came later on. We wanted to watch a movie together and we wanted to be close. What amused me at the time and still amuses me is that she was hesitant to get in bed, but not for the reasons you would think. My neck brace was well off at this point and there was no real danger of me getting hurt if she lied down next to me. She was nervous because she didn't want a nurse or somebody to walk in and get us in trouble. How great is that?! Her only wariness was because of rules; it had nothing whatsoever to do with me. It wasn't against the rules at all, or at lease no nurse ever yelled at us for it.
She moved me over in the bed, set up the movie, and got in close. It was totally normal and overwhelmingly exciting. We didn't talk about what we were doing or have a deep emotional moment attached to it. We spoke about how great The Talented Mr. Ripley was and how incredibly underrated Matt Damon is as an actor, especially in that film.
There was a nurse who walked in about three quarters of the way through the film to see if I needed anything before her shift ended. She was a bit startled to see Anna-Maija laying next to me but after a second flashed a knowing smile at us and disappeared behind the curtain. I thought the smile was meant as just a joke but maybe she saw what was really happening. Lying in that bed, in that room, in the heart of a rehab hospital for patients with severe spinal cord injuries, were two kids in their early twenties who were about to realize that they were very much in love.
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January 27, 2007 at 09:19 PM EST
Monday, January 29, 2007, 07:57 AM
I'm taking a writing class at Skidmore this semester titled Personal Experience And The Critical Voice. It's a creative writing class based on developing a student's skills in writing personal essays. When I read the course description I realized that it's basically a class on how to write these posts. The following is the result of an exercise that the class did on telling an important story from childhood through one of the five senses.
I've wanted to be an actor my entire life. Since I was four years old I've answered the question "what do you wanna be when you grow up?" with the same two words: an actor. Actually, sometimes I would say, "I wanna be an actor". So that's five words. It's funny though that the first time I performed in front of a big group of people I wasn't acting. I was dancing. In fact, as legend has it, I was dancing really fucking well considering I was only seven years old and had never been taught to dance in my life.
My family stayed on Martha's Vineyard for half of the summer when I was seven and to keep their children entertained my parents sent me and my little sister to day camp at the Chilmark Community Center five days a week. One day all the cool older kids were going around the camp asking the campers if they wanted to sign up for the talent show that night. They were giving a big sales pitch to my group saying that they could sing along to their favorite song, mouth the words to their favorite song, dance to their favorite song, and a few other suggestions that I don't remember because my mind snapped into focus when I heard that I could dance to my favorite song. My best friend and I were big Michael Jackson fans and we were playing around a few play dates before I went to Martha's Vineyard making up our own dance to Black or White. I signed myself right up.
This part of the day I don't remember, so it's hearsay from my parents. Apparently I told them that I was in the talent show and that I was going to dance and that I needed the song black or white because I was number four on the list. They had no idea what I was talking about, had never seen me dance, had never heard me say I like to dance, and had no idea that there was a talent show scheduled until one of my counselors said she was excited to see me in the show.
Flash to the very clear memory that I do have of that night. I sat with all the other performers on the floor of the gymnasium/auditorium right up close to the stage and right in front of an antsy, nervously chattering group of parents. The folding chairs that they were sitting on were old and every single one of them squeaked at the slightest movement. Little sisters in the audience were screaming to get their parents attention, getting yelled at by their parents for being inappropriate, crying because they wanted to be the one going onstage, and asking a million and one questions about who people were and what was going on.
I remember that the show started with a girl mouthing the words to "part of that world" from The Little Mermaid. I knew that song by heart and was so bored by what she was doing that I closed my eyes and started humming it to myself. When she was done everyone in the room put their hands together in polite appreciation. I think she might have been one of the kids whose mother yelled something obnoxious while everyone clapped like "Yaaaay Jessica!"
During each of the next two performances I zoned out while the kids danced to under the sea, again from the Little mermaid, and now the words to some pop song that was popular that summer. I was brought back into reality at the end of each song by the polite clapping, occasional cheers, and occasional whistles of the proud parents in their squeaky chairs and their restless children in their squeakier chairs. After the pop song my name was announced over the microphone by the coolest of the cool older kids. I ran onstage to the sound of polite parental pre-child performance clapping.
The dance itself is a total blur. The moment I finished dancing is as crystal-clear as anything else in my memory. I was hit and almost blown over by a shock wave of noise I had never heard in my life. The crowd erupted. They were out of their seats yelling, cheering, whistling, and clapping. The noise rose up out of the sea of people and the wave of applause crashed on the front of the stage and enveloped me with pure joy.
The cheers died down and I went back to my seat on the floor. The sound behind me was different now than what it was before I danced. Instead of squeaky chairs and complaining children there was a murmur of intrigue. I heard whispers through the murmur. "How old is he?" "What's his name again?" "Who are his parents?" "This one's got it!"
My mom signed me up for dance lessons that fall. Fucking hell I miss it so much.
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November 20, 2006 at 06:29 PM EST
Tuesday, November 21, 2006, 08:03 AM
Needless to say, it's been awhile. In the year that followed my injury, writing these posts and taking in the responses they generated helped me deal with, validate, and communicate the bizarre, surreal, and horrendous experiences I was having. I don't think I've used the word horrendous before but what else could it have been? Those moments when I'm alone and have nothing to think about except how different life was and how much of my body is gone: horrendous. Those moments when I'm doing something, anything, and the same thoughts and feelings take over: horrendous. I didn't write about those moments all the time because there's more to my life than the depths of despair. Everyone throughout his or her life experiences the existential thoughts and feelings of agonizing frustration, hopelessness, confusion, bewilderment, loneliness, and emptiness. Everyone. This happens to varying degrees at different points in time, but it happens nonetheless. If you're reading this and you haven't ever felt the desire to curl up into a ball and whisper or raise your arms to the heavens and shout, "What does it all mean!?", then don't stop taking whatever drugs you're on because it really sucks. Over this past summer there were new, exciting, and interesting experiences that I was having every day while I was in the beyond therapy program at the Shepherd Center in Atlanta. I wanted to let people know about all of it so that they could understand the day to dayness of my life there and respond to my thoughts about it. I couldn't write it all because I was simply too physically exhausted at the end of just about every day to even think about applying the mental energy it takes to write one of these. So my writing dropped off.
I then came to school, or "College" as they like to call it here, and oh my God so much is going on here. So much that is hilarious, ridiculous, fascinating, horrendous, you name it. I'm back in life and it's incredible. I get to worry about doing homework for class, being late for play rehearsal, what I'm going to do over the weekend, and other normal stuff. But I still want to keep writing these posts. So why haven't I been able to do it? I don't get to use the copout that I don't have enough time. If I want to make the time for something, I'll figure it out. Granted, I don't have tons of time and I do get very tired at the end of every day because I'm constantly on the go, but it's something else. It's because I am back in life and no longer on an adventure that I consider separate from what my life is. I feel like my major issues and problems are personal in a different way now than they were before. This isn't to say that I now have tons of dramatic personal problems that I can't talk about and won't share with anyone in person or in cyberspace but to say that I'm confused about where I want to draw the line. What do I put out there with the knowledge that more than just a few people are going to read it?
I'm working on it. There is something that I do want to put out to the community. Although you haven't read specifically about how successful school has been, take it on faith that it has been very successful. I've stayed healthy throughout the entire semester, I got cast in the main play that the theater department is producing, I have a room with a double bed, an electronics system that allows me to control every light in the room individually, all of the medical supplies that I need, a new computer, nice clothes, two women hired through an agency that serve as my personal care attendants, my standing frame, a new $15,000 electrical stimulation bicycle, a stronger singing voice since I've been practicing with my a cappella group, great classes, great professors, great friends, and a lot of struggle. I put that last one in there to emphasize that I am by no means breezing through this now. It's tough as shit and emotionally and physically draining. I don't do it alone and I could not have done it at all without all of your help. Not a day goes by that I don't recognize that my family and I would be nowhere near as functional and capable as we are today if it weren't for the emotional, organizational, creative, and monetary support we have received from everyone. When I'm out of those moments that slap me across the face with hard reality and am able to look at where I am from a different perspective I see that, all things considered, I'm doing pretty damn well.
Zack
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August 1, 2006
Tuesday, August 1, 2006, 07:31 AM
Being in Atlanta has been doing good things for me. I can feel how much stronger I'm getting, especially in my right shoulder. Aside from being paralyzed in over 90% of my body, weakness in my right shoulder has been a major physical setback. It is not as strong as I want it to be, but it's not as bad as it used to be.
The program is called Beyond Therapy. It is an intense exercise and activity based rehabilitation program that follows the idea of neuro-plasticity. Basically, the brain is still looking to connect to the body and has the ability to reconfigure neural pathways to reach the rest of itself. The brain has the best chance of making these new connections and then developing them to a point where there is functional movement through constant, rigorous activity. We bombard every area with as much stimulation and information as possible.
Because the program isn’t structured around achieving specific functional goals, insurance companies don’t pay for it. Never mind the fact that programs like these have been getting the best results.
I have eleven sessions of therapy each week. Twice a week I get into the pool and work with two therapists for an hour. I have flotation devices put on my body. For some workouts I will lie on my back and do different strokes. For others one of the therapists will hold my knees and spin me around in the water giving me resistance that I have to fight. For example, if she's swinging me to my right side my right arm will come up naturally and I have to pull it down to my side against the water that's pushing against me. The therapists also either prop themselves up on either side of me or front to back and stand me up while I try to keep my balance using the least amount of support from them that I can.
I use a machine called the Giger twice a week. I lay on my back on a mat and have my hands and legs strapped up onto arm pedals and foot pedals. Then, with different levels of resistance, I try to keep the best constant motion that I can.
For another two sessions a week, I do what is called core work with an exercise physiologist. I do a series of shoulder and arm strengthening exercises and depending on how well I can perform each task we use an electrical stimulation machine to fire onto the muscles I’m working out or we use weights to give me more of a challenge.
Three times a week I’m hooked up to a functional electrical stimulation bicycle, also called an FES bike. I'm pretty sure that I have written about it before. I'm strapped into foot pedals with electrodes on my legs that activate and deactivate in sequence to allow the muscles in my legs to do the motion that rotates the pedals.
The last thing that I do is use a machine called the Locomat. This one is very cool. I'm put into a harness around my waist and chest and then hooked onto a pulley system that suspends me in the air over a treadmill. Then, two robotic legs splints are put on to my legs and they move me in a walking motion over the treadmill. These things are about a quarter million dollars a pop. Another component of the Locomat is that there are sensors on both hips and both knees that track the amount of resistance or support that my legs are giving the splints.
Just like I've been doing since the beginning, whenever I'm doing therapy and most of the time that I'm not I visualize my brain and my body reconnecting. I try to move things that don't move, I do my own version of positive energy focused meditation, and I actively remember what it's like to have control of my body. When I'm walking on the Locomat and I focus my energies on one task, such as bending my hip up or kicking my knee straight, the machine registers a response. I have had the slightest, slightest, slightest response in my right hip, right knee, and left knee. Something's getting through. The machine doesn’t pick it up 100% of the time, but I know that I’m making things happen.
Oh, the Botox thing didn't work. That sucks.
Anniversaries are no fun. My neck and I had our first one on July 12. It was very rough leading up to it and in the few days that followed. Actually, on the day I was doing fine. As simplistic and as obvious as this is, the reality just gets too overwhelming and yes I know that “too overwhelming" is redundant. I miss what I had and I want it all back.
I recently saw “An Inconvenient Truth", a documentary about the real, scientifically undisputed threat of global warming told to us by a man who used to be the next president of the United States. Without going into specifics about the causes and effects I will say that without change, the world is going to see catastrophic disasters incomparable to any humankind has ever experienced. This is going to happen so soon that basically anyone who isn't already a grandparent can't say, “Whew, good thing I'll be dead before any of it gets really bad." The good thing is that there are solutions and answers to this problem. The bad thing is that nothing effective is happening. When you think about it in terms of literally saving the world, it's not that hard to do what needs to be done.
I was thinking about the movie a lot after I saw it. One aspect of it touched upon the government’s refusal to take this seriously and of its deceptive tactics to prevent accurate information from being spread. One could say that this is just conspiracy theory but, even if it is, who cares? Things should be done right now regardless of what was done in the past. The only way that dramatic and effective change is going to take place is if the people in the world who hold the most power demand that it happens. Asking everyone to do their part by driving less, using different light bulbs, recycling, and planting trees is all well and good but that isn’t going to stop a glacier from melting. The best chance of anything happening lies in the hands of the government and instead of doing something, they shrug their shoulders and say, like some people I spoke to about it today, “I don't really think all that stuff is true." Yes, it is.
Why was this making me so mad? I mean, yes, the point of the film is to shake you up with the truth, but there was something else. This is a problem that affects everyone, the world, existence, and the answers are there and not much is being done by those who should be doing it. I have a problem and there are no answers. Nothing exists that gives me more than a slight chance of moving much more than I already can. Let’s make a comparison here. Global warming for Earth would be like me developing serious, blatant symptoms of pneumonia (or some other virus that is really terrible). Spinal cord injury for me is like Earth getting hit by the asteroid in Armageddon if Bruce Willis wasn't able to blow it up at the last second. There's an answer to pneumonia. There are effective treatments that will stop me from dying and help me return to my normal, healthy self. There's no way to save Earth once it gets hit by an asteroid the size of Texas.
Wait a minute! Wait just one minute!! True, if Bruce Willis doesn't save us, we’re screwed but that doesn't necessarily hold up for me. There is hope. There is possibly an all-out solution somewhere and again, my government fucks me over. Stem cell research gives me a good chance. It gives millions of people a good chance. Objecting to it on the grounds that cells that could possibly dramatically improve and save the lives of millions are babies is ludicrous. Bush does nothing to help save the world (and I don't think it's too dramatic to say that) and doubly insults me by doing what he can to shut down access to a source of hope. I'm ashamed of his inaction and furious with his actions.
Some could read this and say that I'm good at bitching but I don't do a thing. I'm doing what I can to fight against my injury and the bits of publicity that I've had over the last year aren’t there to build up my ego or to make others feel sorry for me. I know that I'm smarter than most and I have the potential to help cause positive change if presented with the opportunity. When opportunity presents itself, I want people to know who I am and respect who I am so that they listen to what I know to be true. I don't know what my fight is going to be, but I know that I want to do good and that I can do good.
You can't predict the events that are going to shape the course of your life, but you can choose how to respond to them. I'm trying.
-Zachary Weinstein
www.climatecrisis.net
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