From A Disabled Perspective:
The Tumultuous Life of Darrell Gilkes
By: Darrell Gilkes
Dedicated to my Closest Friends, Who Made Sacrifices to Edit and Read Through My Pain
"A friend is one to whom one may pour out all the contents of one's heart, chaff and grain together, knowing that the gentlest of hands will take and sift it, keep what is worth keeping and with a breath of kindness blow the rest away." - Arabian Proverb
So, you’re probably wondering what you’re reading.
Well, if it makes you feel any better, I don’t know exactly know what I’m writing. No, I’m serious. Well, actually that’s a lie. I do know what I am going to talk about. I just don’t know how I am going to explain it to you. Yeah, I know what you’re thinking. This is going to be some hippie liberal crap that will just go on and on. I promise you it won’t. It’ll be good. You’ll like it. I guess I just have to find a way to tell the story. Or I guess tell you the story behind telling you the story. This would be good, because I am currently telling you that I am telling you the story behind the story in which I will tell you about later. You still with me on this? Good, you’ve just finished the hardest paragraph in this whole book. Anyways, here’s the story behind the primary story:
It was a cold day in November of 2010 when I sat down at my screen. It was late at night, and my family had all but gone to bed. I sat at my screen, peering into the electronic haze, thinking about my life. I was in my throes of being a teenager, dealing with the pressures of high school to conform to their demands, while struggling with my own personal fight for romantic love. It was a fight for independence, but not to find my own identity. In fact, I had known my identity for years. No, this was a fight to be acknowledged and respected amongst my friends as well as my family. I was a man looking for respect, not only on a mental level but also on a physical level. You see, I have a disability called Cerebral Palsy. Cerebral Palsy is a brain injury typically caused by lack of oxygen at birth, which can result in all kinds of side effects. Mental retardation, being crippled, or being unable to control specific muscles can all come from this. I, however was very providential in having a very mild case. I can still use most of my muscles for most functions, and am fairly independent. Yet certain key aspects of life have also been changed for me. I cannot write properly. I cannot walk normally. I cannot have the same mindset as many other kids have, to think that you can be whatever you want in life. These were some of the things that made me furious during high school. But it was on that cold day in November where I felt vulnerable. But being a man who couldn’t let down his guard, I finally realized as I stared at my screen that I needed to channel this emotion somehow.
I finally put my hand on my mouse, and opened up Facebook. No, I wasn’t about to write an emotional status on Facebook like thousands of teens do every day. This felt like something which needed to be bigger. So I sat down, and wrote a note entitled From a Disabled Perspective:
You know I've realized something. Something I've never come to terms with in my life before.
I'm pissed that I'm disabled.
No matter how I spin my life, I always end up with the same conclusion. I thought I had come to terms that I was happy being disabled. I was wrong. After years of trying, the challenges of being disabled have finally caught up with me. Before you think that this note is about me getting people to be sorry for me, or that I'm ranting, I'm not trying to. I'm merely trying to come to terms with stuff I need to get out of my head and placing them somewhere. Being disabled sucks, but it's even worse when you’re in a dog eat dog world like high school. It is a place where men compete for domination whether it be social or physical. I have happily and unfortunately been extracted from this social taboo. I say this because I know I can never compete with men in life, which has its positive and negative cons. The positive is that I don't have to fight like everyone else in society and I don't have to compete with men to feel "superior" to them. However, that's also the negative side too as I cannot compete with others. I have this lingering feeling that I am not only inferior in one or two aspects, but in all aspects of social life. When you can't keep pace with even your friends when it comes to competition, you know you've got to have feelings of inferiority. This inferiority has started to take away from who I used to be. I feel like everything that was good about me 4 years ago has slowly drained over the events of high school. I mean sure, I may be funny and everybody laughs at me being a goofball, but that's not going to take me anywhere in life. So here I am, stuck in the midst of a social jail in the middle of high school, with no way to get out. I feel like I'm on my hands and knees just trying to fight for mere social acknowledgment amongst my peers sometimes. As a result, almost every social experience of high school has become drastically hampered. When it comes to relationships, it might as well be none existent. I realize only now that because I cannot compete with men, I cannot prove myself to any woman or myself. Besides, who the hell would want to date a handicapped person when there's so many better to choose from. People say, "I judge based on a person's heart and how they act.” Like hell you do! Fact is everybody judges on good looks at school. If you disagree with this, let me ask you, would you date a disabled person in high school and not be ashamed of it? Whenever I even try to compete for anything in a social society, it's merely shot down as some kind of joke. I get a laugh when people say that they are "unbiased to love." I've become so alienated to the idea that I don't even try anymore. At this point, the idea of being in a relationship is so far distant that I can't even imagine what it would be like in reality.
Therefore, I have reached my ultimate paradox of being disabled. I can escape the “macho-man” spirit of competition that is so predominant in everyday life on a personal level, but not on a social level. In high school, society demands for this and therefore I am the odd man out. As a result, I have this odd social position in the school. I am able to have a stable social life with everyone in my grade, yet I am unable to garner any kind of respect for any choices or decisions in which I make.
You can call this complaining or whining, but I assure you this is all how I feel about how high school works. I find it quite funny actually in a sadistic way. You can be treated as an equal, but you can't socially exist as an equal. It's all just one bizarre joke now. This either means something or I'm completely insane.
Finally, I had got every little thing out of my mind for once. The feeling felt liberating and empowering. Nobody could understand my perspective, and nobody tried to anymore, so I put it in the most public of places with Facebook. The comments were part of the usual fare that I was “persevering” or “such a great person.” However, there was one comment that stuck out. A high school friend of mine said I should write my own book.
I never had thought of the idea beforehand, but it did intrigue me. After much thinking I decided to write this, whatever this is. I don’t know if there is only one copy of this in existence, or if it is a massed produced book, or if it’s something you found in an attic while cleaning it up. Heck, I may have never released this, who knows? What I did know, however, was that I needed to get my emotions out, and I needed to do it through writing. So I went to it and started writing. There were no plans, no structure, and no place that I wasn’t unwilling to expose within these pages.
I just began to write, and write and write. At first, it was a simple pet project that I wanted to do. There was nothing better to do with my time. I never played sports, and I wasn’t (at that point) a very social person. But as time grew on, it became much more than just a little project. It became a place of isolation and safety for me. As if I could take myself out of the real world for a little while and just explore my own mind. It was as if I had bought myself a small sailboat and just went sailing away through my own conscience. Eventually, the book became a sort of island for me. A place of isolation, peace, and solitude where I could destroy what had choked me in the past. And it was only there that I could slowly deal with the pain, and ship it away in small message bottles into the vast ocean, hoping to never see it again. In addition, I’ve always felt that there hasn’t been enough time invested into understanding a disabled person’s mind, and how it works. So I thought I’d be filling a need in that category as well. However, I do not represent every disabled person’s experience, nor do I claim that this is what “being disabled” feels like for everyone. But this is what it was and in a lot of ways, still is like for me.
When I wrote this book, there was never really a true goal to why I was writing it Most people write books so they can give them to a publisher, and make a few quick dollars nonchalantly off of what they've written. But I didn’t write this for pecuniary reasons. I didn’t write it to gain fame. I didn’t write it to destroy anybody’s image. I wrote it for me, and me alone. I wrote it for sanity, and I wrote it to escape some very dark times in my life. Let me make that clear-I’m not doing this to profit off my experiences, but rather for the audience to understand and learn from them. You’ll find as you read that this is an ongoing theme within my life. I do a lot of things to gain understanding.
Whether you found it in an attic, or bought a copy, or found these pages scattered in a dumpster somewhere, it really doesn't matter. I don’t really care where or how you found it. However I will tell you now, that this is about the life of Darrell Gilkes. It will be told to its truest extent, risking the consequences that what I say can be criticized or viewed as downright damning to some people. Whether you found this in your attic or you need something to read on a January afternoon when you’re home with a head cold, I can only hope that my story will intrigue and entertain you to some degree.
I invite you now to sail away with me to my sanctuary. My island. My place of concord. My place of happiness. My place of pain. I cannot guarantee that what you find will be the things you expected, or that you wanted to hear. In fact, I can almost guarantee that you will be shocked and even scared by some of the things you will find in these pages. I know I was when I wrote it. But, like all great books, the journey of a hero is tumultuous and usually complex in nature. And it takes great pain and suffering, to gain great understanding.
Are you sitting comfortably? Good. Then I shall begin.
Chapter 1- My Birth, My Death, My Life
January 2, 1993 was a day filled with both joy and sadness. I was born on that frost morning at Southlake Regional Hospital. Then I died. Short story, eh? Well, I’m not dead obviously since I’m writing this. But when I was born, I did die, albeit for a few minutes anyways. The doctor appointed to my mother at the time was nowhere to be found during my birth. Without him, a handful of nurses with limited knowledge were the only people available to take care of my mother. For some reason, I began to suffocate and was unable to breathe. My mother had once told me that my head swelled to the size of a watermelon. Whatever happened in those few crucial minutes turned out to be a very bad series of events. Soon, after they had gotten me in a stable condition, I was whisked away via ambulance to Sick Kids Rehab in Toronto.
There are days that go by where I wonder about what happened that fateful day. What specifically went wrong at my birth? Why was the doctor late? There were some days, I debate about strolling up to Southlake and finding my file, so I can find the man who made me this way. From time to time I’d imagine staring at the doctor face to face and asking him, “Why were you late that day?” It’s not that I am bitter about my disability, but I am rather curious about finding the reason that changed my life forever. I know that in reality, I would never do such a thing. I think it's because I already know that the doctor probably doesn’t even remember the day, or even cares about my problems. To him, this event which seemed so insignificant and so meaningless turned out to be life-changing for me, as well as everyone else involved in my life. But, I would just like to stare into the man’s eyes; to see the face of the doctor who gave me the one thing I struggle to deal with every day. I guess I would find it somewhat of a moral victory. I did eventually find out who the doctor was, and as it turns out, he had been my allergist for years. I like staring right into his pupils sometimes, I can sense a small twinge of guilt that gives me a sadistically happy feeling. We’ve never discussed it though. I don’t think I want to. I’d be too scared of the answers he would give me.
Getting back to the story, when I was finally released from emergency, the medical staff placed me in a medical crib. This crib was my home for the next week or so. I can still watch the old videos that my father taped during these days. My mother, father and grandmother are shown in your atypical hospital room, gathered around a glass crib. I was given a personal nurse to tend to my every need and want. There were little toys and dolls sprinkled around my crib. There was a sign above that said “Please be Quiet”- apparently the drugs they gave me after my birth gave me a hangover that a 40 year old would experience. Finally, after about a week, they took me out of the incubator, which by now had been filled with small dolls and toys by my parents and others who came out to visit me. Although I was stable, it was clearly obvious that my future at that point was uncertain. I had tubes sticking out of all kinds of places; my wrists, my mouth, and the top of my head. I looked more machine than I did human. In all my early baby pictures, I had a mohawk because they had to shave both sides of my head in order to get the tubes into my skull.
As I watch these videos, I can't help but notice how all of this had an effect on my parents. Imagine your child, who you carried for 9 months being born. Then, a doctor messes up and a few days later you're in a children’s hospital. You don’t know if your child is going to even survive to the next day. Yet, my mother is sitting there in a rocking chair, looking intently into my eyes, rocking me back and forth. The sight makes me tear up every time I see it. She treated me as if I was going to make it, that there was no doubt my life was threatened. Out of all that chaos, and all that uncertainty, she still kept the most important emotion of all: love. She loved me despite all the things that were happening to her. I was holding on by the most delicate of threads; and yet she still gave her utmost compassion for me.
Being disabled, it’s hard not to look back and constantly reflect on an event that altered your life forever negatively. It’s even stranger, considering that I have no recollection or control of such an event. Yet, that single event had drastically changed my life forever. For example, let’s look at the events of my birth and how it affected my religious beliefs.
As a result of the events that took place at my birth, my entire view of religion and morality are drastically different than others. Now, I will go on record right now to say that I am a Christian, and I do believe in a God, Jesus etc. However, I do struggle with questions concerning religion and disability. On one side of the coin, I can believe in a God. But if I do, I also have to admit that God purposely gave me my disability. Obviously, this could make someone very bitter towards God, and even lead to resentment. I’m going to spare you the “Oh why did God do this to me” rant—that’s not the point I’m trying to get at here. But combining both disabled logic and Christian philosophy in a smooth way is an impossible feat. There are far too many conflicts. I’ll give you an example: if I die and go to heaven, my beliefs indicate that there is no sickness or disease there. When I die, will I not have my disability any more, and if I don’t, have I not lost my identity in the process? If that’s the case, then have I become an entirely different person altogether? What is the point in going to a heaven or a paradise, if you don’t even know who you are? Christians over the years have tried to give me general responses like “The true you will be in heaven”, but to me it’s a very yes/no question.
But let’s look at the secular side. Say I don’t believe in a God, and I believe that what happened to me was just a statistical probability. Then what purpose does my life serve? Do I not just become a statistic, a failure rate, a defective product that got the crappy end of the deal? I cannot continue with that logic either, simply because it is way too damn depressing. I can’t go on with life thinking that I was just that 1 in 500 or 1000 that got screwed over, and it’s just bad luck that it happened to me. What kind of an existence is that? It’s pointless to live your life from that point of view. This is because you would have to believe that your life was purely made by chance, and I would have to believe that my life is just a series of coincidences that dictated my current state. I like to believe that it is not. How could I? It would make my entire existence, my experiences, my emotions, my life, a coincidence and nothing more. I do not want to believe that my entire life and existence was left up to a cosmic coin toss. I must, therefore, believe that there is a reason these things do happen, and that life is more than just a series of coincidences. I use the same logic in my religious beliefs, because it helps give purpose to my life. I’d rather live my life at least believing that my existence is meaningful, than thinking it serves no purpose. Even if that fact is a lie.
You’ll see how my religious views change throughout the years as a result of this struggle. I don’t believe it’s a lack of faith, it’s just searching for the proper answer is all. I’m just looking for a decent enough answer that helps me fuse my disabled life with the belief of a God. I think as people change, so do their beliefs. I completely disagree with the idea that someone should always be loyal with a specific denomination or religion all their lives. It proves to me either 3 things, either a) they’re so brainwashed they’re zealots b) haven’t thought hard enough about existence or c) have magically found a religion that perfectly synchs up with all their experiences in life. C almost never happens though. You have to be real lucky to get C.
I apologize for the tangent. Back to the story. After I was born in Newmarket I was rushed to Sick Kids in Toronto. I had suffered from a lack of oxygen to the brain at birth. The people at Sick Kids are the ones who deserve all the credit. They saved my life, and for that I owe them a debt I can never repay. Once again, this area of my life is foggy, and who knows how many doctors or surgeons took care of me over that period of time. Here’s what I do know: My doctor didn’t show up, nurses didn’t have the legal right to deliver a baby. They told my mother not to push, and because of that I somehow have Cerebral Palsy.
It was soon after my birth the bad news came to my parents. The doctors announced that I would most likely have brain damage. They didn’t know to what extent or to what degree the damage would have on my brain. They explained that it could be a slightly turned in foot. Or, it could be full mental retardation and physical incapacitation. As they discharged me from the hospital, there really wasn’t much detail given to my parents. The doctors only said to continue to do physical therapy every day, and let the pieces fall as they may. I cannot imagine how much stress I put my family through. Day by day, my mother would lie me down on the ground and stretch my legs, my arms, and my hands. Disability doctors came every month or so and did full write ups on me. They literally wrote entire essays on what areas I was weak, and where I was improving. The first months after birth always have a monumental effect on how the disability will be in the future, so this was unsurprising. I was a year old before they officially diagnosed me with Cerebral Palsy. Once they had, these doctors slowly faded away until they stopped coming to my house altogether.
Yet the situation was still bad. I could not walk until I was 3, and even then I would stumble a lot. But this was only a cosmetic change. The real issue the doctor’s were worried about was my mental capacity. Even at ages 2 and 3, I hadn’t developed the ability to talk. Typically, when this happens with babies, it is a sign of being developmentally delayed. Obviously, if your child isn’t talking by the age of 3 and a half, close to beginning kindergarten, it would be a clear sign. Yet, I started miraculously talking around the age of 3 and a half during the summer. Well, actually nobody knows when I started talking. My mom recognized that I could talk at 3 and a half, yet she believes I started talking earlier than that. There was no reason why it took me so long to talk, it just did. It was so sudden that even well into kindergarten, both my mother and my teachers observed how I was learning, and were trying to decide if I was developmentally delayed or not.
My early years were obviously focused on trying to “make the best of my disability.” I would go to speech therapists, physiotherapists, or disability specialists. Most of them gave the same comments to my parents: he needs more time to develop this; he needs to practice to do better at that. Sure they were helping, but it seemed a lot of the time (and even while growing up) that these people saw me as an experiment. I was an interesting or rare case that either didn’t bore the crap out of them, or saw me as something that would help further their career. My parents were constantly condescended upon as idiots, and they felt I became more of a lab rat than someone they were actually trying to help. My dad always resented nearly everyone who came to deal with me doctor-wise. To him it seemed that everything a doctor or therapist did for me had more negative connotations than positive ones. Other than that, my life as an infant was very good. My parents and sister treated me with love, and tried to do the best they could for me. I had lots of toys and lots of people around me, so I was quite happy.
In, my early years was an interesting incident of discrimination. When my mother started going back to work as a teacher, she had to find a daycare for me. There was a local daycare close to where I lived called "The Teddy Bears' Picnic." When my mother tried to enrol me, she had to explain my disability to the organizers. Their response was, “we can’t take care of children like that.” Now remember, I could walk and do most things a child could do at such an age. But, it was the first of many times that my disability would be considered an “inconvenience” for someone. If I had the chance, I would’ve sued the pricks myself, but once again my mom was very passive. Looking back, I guess it is a good quality that my mother instilled within me. I would experience many other occurrences of discrimination, from both strangers and from friends, all with varying impacts.
Without the main source of public day care in Newmarket available, my parents searched for alternatives. They eventually found a small at-home daycare through my aunt, who was friends with them at a local church. And thus, the Baber family was brought into my life. The Baber family was a warm and caring family that always seemed in good spirits. Still to this day, I owe this family a lot, as their influence had a very big impact on my life. They treated me as an equal with respect, and nurtured me as much as I needed. There were a few weeks in which I was so clumsy that I cracked my head open at their home. I remember it happened twice in one month, and the second time they accused the Babers, as well as my parents, of physical abuse. The situation got so bad that at one point they seriously considered keeping me at the hospital and not allowing anyone to take me home. However, the hospital did eventually give me back to my family after there was no evidence of abuse. It was a scary couple of weeks for both my parents and the Babers. I can only imagine what it must have felt like for both of them to deal with such an accusation. I remember when I went to the hospital the second time they put me in an office room in front of a mid-age woman. She started asking me questions like “Darrell, does your dad ever get angry at you”. Or, “What happens when you get in trouble”. I was just really confused the whole time, and I kept getting worried that my parents were in trouble. Obviously they dropped any kind of suspicions, but it was a very strange early moment in my life.
I spent about 2 years at the Baber’s home, and they were filled with good memories. But once again, the doctors messed up a good thing. Since I was not talking, they became worried it was due to a lack of “social stimulation,” which I still disagree with to this day. I had plenty of social stimulation with the Babers, as they had a few other children under their care, but the number was never over five. So, the doctors suggested that I should be put in a more social environment. They placed me in the Grace Church Daycare, as that was the place my sister was going to school. Going to Grace Church was a very strange time for me as a child. I remember having to wear prosthetic braces on my feet, and the day care people had to help me put them on each day. I don’t think there was ever a specific moment when I realized I was different than everyone else. It was something that had been hard wired into my conscience since the beginning. I don`t think at that time I knew specifically I was disabled; I just knew for some reason I was treated differently. At this time kids didn't even seem to think I was that different, and when they did, it was mostly a positive thing. They used to fawn over my braces and how bizarre they were. They looked at me like I was some kind of bionic man. I think at one point I even let a kid try them on, but then the daycare workers found out and scolded me. I`m not exactly sure what kind of social life I had in daycare. I don`t think I had any close friends, or people I hung out with consistently. I would merely ping-pong back and forth between several different groups, and play whatever they wanted me to play. Some of the kids I would become amazing friends with over the next 9 years. The one that truly sticks out in my mind is Matthew Lawrence.
Matthew Lawrence was one of the most honest and compassionate people I have ever met. We grew up alongside one another through elementary school and most of high school. Matthew has always been a reliable and trustworthy person. If there was ever anyone in my elementary class that would take the time to listen to me, or help me out in any way, he was it. If I could give out an award for a person with the purest of intentions, I'd give it to Matthew. Our friendship, however, did not start in daycare per se. We knew each other in daycare, but we weren’t close. I wasn’t really close with anybody back then, nor did I attempt to. I don’t know why, but I never really developed friends until school started. I’m sure my parents were concerned about it. I never thought anything of it at that age. Ultimately, my birth to age 4 was lived with only one goal in mind: to adjust into mainstream life. Sure, I could walk, and I could talk, but did I have any learning disabilities? Could I be social and gain friends in school? Could I even do work? These questions, would finally be given an answer in the next few years of my life.