Story by Mike Berkson
Artwork ‘Soaring’ by Kimberly Gust
Saturday nights are made for partying, right? Or is it fighting? Doesn’t really matter, neither apply to me. I am not much of a drinker, I don’t go to clubs, I pretty much keep to myself at home. Not your typical 26 year old. To say that I am an enigma would be an understatement. But, my twin brother was throwing a party for his girlfriend at a bar, downtown. I was obligated to go. I really like my brother’s girlfriend, I just dislike going to bars. Plus, this totally takes me out of my routine. I usually go to bed around 11:30pm and I start that process around 10:45pm or 11:00pm. Taking various pills, and the whole hygiene thing. Going downtown for a party is the last thing I want to do. The party doesn’t even start until 10pm. I live in the burbs. I know lame. But, it kind of works for an enigma like me. I just have to accept that my routine will be obliterated. Every once in awhile, I guess it is okay to shy away from my routine. It’s just that when I do that, it takes away the little control that I have. You see, not only is David my identical twin brother, he is my “able-bodied” twin brother. Me on the other hand, well I have been dealt a shitty hand of cards. Shortly after birth, I was diagnosed with cerebral palsy. The kind of cerebral palsy I have affects me in a myriad of ways, it is called mixed quadriplegia, which means I virtually have no control over my limbs or my torso. I have to have help for every basic human need. Someone literally has to feed me, dress me, and change my diaper. Not the best collection of attributes when you are trying to impress the ladies. Let me paint you more of a picture. My arms are permanently bent and extended, if that makes sense, I look like a scarecrow, or actually like a deformed Jesus on the cross. I am slouchy, have branch-like arms, thick glasses, and I may or may not be drooling…and it isn’t because of the short skirts the hoochie mommas are wearing these days. (Not my brother’s girlfriend of course, she’s a classy chick. But I digress…) I am in a wheelchair. I don’t use a power chair, mostly because I have no dexterity in my arms to control the damn thing. I would crash into walls, people, and that is before drinking any alcohol. So therefore, If I want to chat up a pretty young thing, I have to literally have someone push me over to her, inconspicuously mind you, and somehow get her attention from a seated position. I can’t even motion to the bartender to buy her a drink. What am I supposed to say to a lady? “Perhaps I could interest you in a little scoliosis?” I have tried. It doesn’t work. So you can see my plight, and you can see why I would rather stay home and watch Law and Order. Law and Order is easy, it’s predictable, it has a high level of enjoyment. Going downtown to a bar has none of those things for me. I already have anxiety…put me in a room full of able-bodied people drinking, and that level of anxiety goes way up. I am comfortable around people just not crowds, unless I am in front of them, not a part of them. More on that later. I go to the party. I do not have fun. I leave early. My Dad comes and picks me up. It sucks. I don’t have the stamina to stay out late, and I know this party will be going way past 2am. I can’t do it. Having my Dad pick me up and take me home by Midnight makes me feel inadequate, it makes me feel worthless. I can’t do anything for myself. Except think.
All I have are my thoughts. My mind tends to fire rapidly and I can’t shut off where my mind goes. Often times it goes to some pretty dark places. I can’t help it. Unlike most people, I don’t have the ability to blow off steam through physical activity. I am too self-aware, which makes it difficult to let things go. It takes so many people to help me complete the simplest of tasks. That really takes the joy out lf living. I mean, I always have to think thirty-seven steps ahead. Just going to a movie with a friend feels like planning a wedding. We have to align schedules, I have to make sure someone can drive me at a specific time…yada, yada, yada. I am tired just thinking about it. On top of that I am in constant physical pain, there isn’t a day that goes by that I am not in some sort of pain. Because of my condition, I have had over 13 different surgeries in my life. For someone who doesn’t move much, my body has taken more hits than an NFL lineman. It seemed that I would always be recovering from one surgery until the next one was right around the corner. It’s all so depressing. I’m not just saying that either. Another thing to lump on the cerebral palsy sundae is that I also battle severe clinical depression. Not only have I seen all types of doctors and surgeons to help with my body, I have seen just as many “head” doctors to help tackle my mental health as well. Psychologists, Psychiatrists, anyone who might offer help. I have even tried meditating but I can’t keep my mind still long enough. It only speeds up what I am trying to slow down. Nothing works. All these factors are a weight that I am tired of lifting. Why is life so friggin’ hard? Enough is enough. At least once a day, I fantasize about blowing my god-damn brains out. That one simple act of pulling the trigger would end all the complications that make my life hell, in just one split second. But understand this…the sad irony is, If I even could pick up that gun, and if I could pull that trigger…I wouldn’t want to. Think about that, if I could, I wouldn’t want to. How sick and twisted is that? Because my mind is constantly firing, my thoughts are exhausting. It is like my mind is running wind sprints every hour of every day, trying to somehow replace the physical activity my body can’t perform.
I remember the first time I told another person about my suicidal thoughts. I had first met Tim Wambach back in 2001, when I was in 7th grade and he became my one-on-one aide. Although I was 12 and he was 27, we became instant friends. He understood me and we always had fun together. He didn’t just see my wheelchair, he saw me as a person. My previous aides all left after a set period of time, but for some reason Tim stuck by my side. So fast forward to my freshman year of high school, and I have to go to the bathroom. However, I can’t use a traditional bathroom, so they gave us something that was more like a cramped storage closet. Now, first keep in mind that the whole concept of high school freaked me out. Couple that with the fact that at any moment a girl I’m crushing on could accidently walk in this mop room and see a grown man changing my diaper. Not sure that would win me a prom date. But by now Tim was a pro, and knew how to help me past the anxiety. He would always make me laugh by doing impressions or telling stupid jokes, whatever it took to take my mind away from what was happening outside that door. So one day we are in the “bathroom”, and I just lost it. Tears streamed down my face like no tomorrow. I could barely talk. Tim put his arm around my shoulders and asked what was wrong. I told him that I didn’t want to live anymore. I felt invisible rolling through those hallways. Seeing all these kids my age running around without a care in the world struck me hard. It was like a constant reminder of what I would never be able to do. It somehow felt like every able-bodied student was just rubbing it in my face. I love learning, but I hated how limited school made me feel. Tim was crying too. I could tell he wanted to say something. He shared with me that when he was younger, there was a time when he had suicidal thoughts as well. He said he often felt worthless, and didn’t see a reason to be on this planet. Tim sharing about his own struggles really hit home for me. Even though he is fifteen years older, I felt like we were equals. He knew what I was going through. He lived it too. Although he was nowhere near my physical state, he was in my mental state and deep down that is where I needed help the most.
My life until then had felt like a burden, as if I was nothing more than an inconvenience or an eyesore to those around me. Tim finally opened my eyes to the fact that there are people who truly care and want the best for me. And in return, I somehow inspired him to do more with what he has. It was like we gave each other purpose. Since that day in the “bathroom”, our relationship has blossomed into so much more. In 2005, Tim decided to run from Orlando, Fl back home to Chicago to raise awareness for cerebral palsy. After he returned we then started a foundation to help others living with severe physical disabilities. People heard about our story and wanted to learn more. We started getting asked to give speeches. Audiences loved hearing about our journey together, not to mention my handsome-face and quick-wit! Our message was resonating. So much so, that in 2008 we decided to turn our story into a live two-man stage show called, Handicap This! We have traveled all over the country spreading awareness and laughs. Getting to share my story on stage with Tim has been a huge gift. I mean, we have been able to make a career based around our life story. How cool is that? But more importantly, our story is helping people all over the world. We like to say we are making minds handicap accessible. We talk about some serious stuff in the show, like I have shared here. What we have seen is that audiences start to have honest conversations after we perform. These conversations create a ripple effect, and help promote understanding and acceptance. After each show, I am often asked questions about perseverance, such as ‘how do you stay positive?’ Or ‘what gets you through a bad day?’ I always respond by repeating a simple motto I live by – Improvise. Adapt. Overcome. When you are armed with that type of attitude anything is possible.
If I am being honest though, there are definitely still times when my mind travels to those same dark places I described earlier. To this day I still sometimes ask myself why am I still here? But this darkness is rare now, and I don’t let it hold me down long. Maybe it’s because of my loving mother, my unbreakable bond with my brother, my crazy and ultra-supportive dad, or my amazing friendship with Tim. Actually it’s all these reasons combined that make my will to survive, greater than my will to surrender.
Artist Kimberly Gust, Chicago IL
I have been working with oils since I was 14 years old. I enjoy painting pictures of gardens and natural fields, marshes, bogs, fens, rivers and oceans.
I paint in a very fast pace, laying down colors, filling in forms, setting the foundation, underlay of color. I layer color over color, creating texture and form. Then when I finish a step I analyze the painting to make sure each every element is represented; Color, form, line, shadow, and impression. My first memory of producing artwork would be coloring in a coloring book on the floor of parents home, surrounded by my father and mother and my brother and sisters. My primary medium is oil painting; I was introduced to this medium when I was a high school student in the early seventies. I experimented with different styles and I was very interested in producing works of art that I was familiar with and that would be apart of my nature and my own familiar surroundings. I wanted to tell a story about my early years by laying down the things that influenced me the most. My grandmother’s and my mother’s flower garden would be my inspirations for many paintings, many beautiful gardens. One season would be the daffodils lazily shifting in the breeze or it would be the brilliant array of phlox magically impressing themselves on us. I went college, UW-Madison, and explored my love, Horticulture. It is something I treasure everyday, it has been a big part of who I am as an artist and a scientist. My love of gardens and painting them has grown into the choices for my paintings. I love to walk in the woods and see the specific elements that a tree or a plant has offered to us this season. I am also, a photographer, and I love to share with you some of my favorite photos, on my website, www.kimberlyjogallery.com, My third favorite things is my pottery, I was able to learn how to throw when in High School, and later in England where we lived for a while. I am taking pottery, and I love the glazing process, I consider it a painting process, mixing chemicals and glazes to come up with a very different palette. I have worked with Raku firing, and soda firing. Each unique and beautiful.