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 28 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. (I probably should let you know here, that I have cerebral palsy. I have to use a wheelchair and I need help to do the most basic of activities.)
Here is the part that no one understands
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. Here is a short video that goes further into my cerebral palsy, and how cerebral palsy effects me.
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 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 use a manual 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 a bartender to buy her a drink. What am I supposed to say to the lady? “Perhaps I could interest you in a little scoliosis?” I have tried. It doesn’t end well.
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. Thanks, cerebral palsy. 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 a little after 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 don’t have the ability to, ummm….how to put this nicely? I don’t have the ability to help myself blow off steam in other ways, either. If your mind is in the gutter, good, that’s where I intended it to go. I can’t even do that!!!!
(Yes, I went there. Deal with it.)
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 of living. I mean, I always have to think thirty-seven steps ahead. Just going to a movie with friends feels like planning a wedding. We have to align schedules, I have to make sure someone can drive me or pick me up at a specific time, I have to make sure I get “changed” before I leave…yada, yada, yada. Nothing is spontaneous. Every piece has to be planned. When you are counting on other people it makes this infinitely harder. I can’t ever just do anything on a whim. Everything has to be coordinated. It is like herding sheep!
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 the way cerebral palsy effects me, I have had thirteen 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. Depression is a part of my daily life. Not only have I seen all types of medical doctors and surgeons to help 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 to mitigate my depression. 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. It’s like my depression strengthens. 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 minute of every day, trying to somehow replace the physical activity my body can’t perform. Depression man, it’s no joke.
What does depression lead too?
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 short period of time, but for some reason Tim stuck by my side.
Freshmen Year of High School 2003
So fast forward to my freshmen 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 of a cramped storage closet. It did have enough room for a makeshift changing table. 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 accidentally 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 wasn’t myself. Tim could tell that something was wrong, before he could even say anything, 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 round 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 too. He fell into a deep depression. He would cry himself to sleep and not want to wake up. He said he felt worthless, and didn’t see a reason to be on this planet. Tim sharing about his own struggles and depression really hit home for me. Even though he was 15 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, in some ways it still does, it’s like I’m 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 the Keep On Keeping On foundation to help others living with severe physical disabilities. People heard about our story and wanted to know 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 two-man live stage show called, “Handicap This!”. We have traveled all over the country spreading awareness and laughs. Making a real difference for all types of audiences. Getting to share our 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. Maybe they get inspired or understand differences better, maybe they are motivated to make a big change or to accept people for who they are. The bottom line is we are changing lives with each presentation. We like to say we are making Minds handicap accessible, but it is more than that. We open eyes and hearts to what to matters the most.
We talk about some serious stuff in the show, like I have shared here. Sometimes, I highlight my depression. Sometimes, I don’t. Sometimes, Tim dives into his depression and sometimes he doesn’t. Regardless, 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 with two things, 1) my humor. I laugh at everything I can. When you are armed with a strong sense of humor you can get over almost anything. 2) a simple motto – Improvise. Adapt. Overcome. When you use both to your advantage it makes the tough days much more tolerable.
If I am being honest though, there are definitely still times when my mind travels to those same dark places I described earlier. I’m certainly not cured of the almighty depression. To this day I still ask myself why am I still here? But this darkness is somewhat rare, and I try not to let it hold me down too long. Some days are better than others. When I answer that question, I am flooded with people that have gone the extra mile for me. My loving mother, my unbreakable bond with my brother, my crazy and ultra-supportive dad, and my amazing friendship with Tim. It’s all these relationships, that make my will to survive greater than my will to surrender.
Rollin’ to a town near you,