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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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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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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Many of you know that one of my biggest problems in terms of my body's reaction to the spinal cord injury has been bladder control. Many people experience constant incontinence (a.k.a. wetting your pants), and although that's happened to me a number of times a bigger problem has been an inability to pass a catheter into the bladder. This is a result of what is called detrusor-sphincter dyssynergia. Basically, when a catheter is passed through the urethra it has to push past the sphincter in order to get into the bladder so that urine can drain out. With me, when the catheter reaches the sphincter the muscle spasms and tightens up and it can sometimes take up to 20 minutes to get the catheter through. I have other bladder problems but they've been alleviated by medication my urologist prescribed.
This morning, I had a procedure done that will hopefully allow a catheter to pass through without unnecessary resistance. It's called a Botox Injection. Yes, that's right, it's the same stuff they use to make old people think they look younger. Supposedly the injected Botox will paralyze the sphincter so that when a catheter reaches the muscle it will relax and let the tube do its business.
I'm very excited about the potential of this procedure because it's an alternative solution to a permanent surgery. There are other options available that involve creating a tract where one could catheterize through their belly button or through a hole that will be made slightly above the hip or with a permanent indwelling tube that exits the body about half an inch above the pubic line. The Botox wears off after approximately three to four months. If it works, I just have to see a urologist every three to four months to freshen up my supply. If it doesn't work, or it only works for a certain amount of time, then I simply let it run its course and consider other options. I know that it's way too soon after my injury to seriously consider any permanent solutions.
I did get a kick out of it when doctors told me that creating a separate tract isn't very invasive; they just take the appendix, the body's most useless organ, and build a makeshift bridge inside the urinary system. This would all be well and good except for one teensy complication: I have no appendix due to it having been surgically removed during Memorial Day weekend when I was 13 years old. They told me that was fine too, they would just use parts of my small and/or large intestine. JUST use part of my intestines! What a bizzare existence I lead now that my doctor can nonchalantly discuss cutting and pasting my bowels so I can take a leak.
Chances are very high that the Botox injection will be a great success for me and in about four months I'm going to get it done again. Before I went on to the operating table my doctor told me that November is 2-for-1 month at the clinic. So if you know or are a middle-aged suburban trophy wife please contact me about how to get rid of those crows feet absolutely free!

--Zachary

P.S. My Dad, Anna-Maija, and I are flying down to Atlanta tomorrow so that I can begin a hardcore, intensive, physically rigorous rehabilitation program at the Shepherd Center.

P.P.S. The best sign I've ever seen in a bathroom: WE AIM TO PLEASE. YOU AIM TOO, PLEASE!


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Tomorrow! Tuesday, Fourth of July! 10:00 p.m.! 10 o'clock news! Fox 25! Television piece on me and a therapy program that I'm involved with!

So there's that and another thing that I haven't posted yet. I'm going back to the Shepherd Center in Atlanta over the summer for an intensive rehab program. I leave on Saturday the eighth of July and will return probably sometime in mid-August. How's that for a vague end date? So that be the plan. Then college in September.

--Zachary



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