ACHF Youth Council
The first things that come to mind when hearing about mental health are assumptions and stigma. There remains a plethora of untold stories because of this. The fact that depression stories are no longer being shadowed in shame is something that we are all proud of here at the Alberta Children’s Hospital Foundation (ACHF). The strength and courage needed to speak up about mental health is an admirable display on its own. On the other hand, that is not the only mental health issue that exists. My story with mental health involves a little disorder called “tactile defensiveness”. This disorder is unknown to some, but is well known by the parents of those who have it. My family is no exception.
Tactile defensiveness is known to be associated with those who fall somewhere along the autism spectrum. It is characterized by a blatant uncomfortable reaction to otherwise mundane stimuli, such as touch, sound and temperature. Those affected often experience discomfort walking barefoot on sand or grass. Some are born with it and some are not. Your body is always on guard and ready to initiate a fight or flight response. I am unsure about my own case. However, if I was affected at birth, then it was a mild case. (Some fabrics were better than others though.) What I know for sure was that it grew in intensity when my father was hospitalized.
Do not touch me, at least not now at this point in my life. It stresses me out. When my friends found out, they would occasionally poke me in the back during class. I would violently spur out of my chair, disturbing the entire class, causing me to apologize afterwards. Back then, I actually enjoyed it a little. It was amusing, but it was easy to see that my teachers were not impressed. They knew it was wrong. I remember meeting their faces of concern and pity with solemn confusion. Wasn’t it all in good fun?
During social gatherings, if I try to endure it out of courtesy, I feel the aftermath of someone’s touch lingering on my body, like a persistent and invasive insect I am unable to brush off. If I think hard enough, I can recall that violating feeling in certain places on my body even now. Some of my other non-related experiences have given me poignant panic attacks. For those who have never experienced one, the only word I can use to describe them is petrifying. They make you feel as if you are isolated and dissonant, even in a room of excitement and liveliness. Everything is surreal, almost warped so that things might not be as close or as far to you as they are, while you stand there absolutely petrified. There is nowhere to run, but all you want is an escape. If there was an escape, you would be too petrified to move, as you feel yourself getting smaller and smaller. They are the zenith of helplessness.
Paired with tactile defensiveness, I would shiver after someone touched me after another violent jerk. This would be especially noticeable at church during prayer. Reactions such as “What is wrong with that kid?” or “Get away from me! You weirdo!” were met with an ironclad resistance, while knowing full well that by no means were they untrue.
When I was younger, I remember clinging to my mother for affection, but now I jerk my body away if she attempts to brush my hair out of my face. As the child of a widow from an arranged marriage, I have often wondered if I was my mother’s first true love. As I prepare to graduate from high school, I’ve become incredibly aware of how much my mother cries. I feel guilty as if my condition breaks her heart, now that she is unable to hold me like she once could. To you mom, I am so sorry, but I just can’t do it. I will always love you regardless.
There are some benefits. My reflexes are impeccable. Good luck hitting me in dodgeball. I can hear from farther distances and I am aware of my surroundings. I’d probably make an awesome ninja. Considering my love for being swift and agile, maybe I should take up training. A condition doesn’t have to be all bad, at least not to me. I had believed that it made me special before and I still do. Some of the most successful people fall somewhere on the autism spectrum and have employed who they are to achieve greatness. They are perfectly capable of living normal lives. Tactile defensiveness is a part of who I am and I would not have it any other way.
We hear that mental health affects people, families and communities. That is merely a sentence. On its own, it means nothing. However, from talking and writing sentences together it becomes a story. We here at ACHF encourage you to tell your stories, whether it be to a friend, family member or other trusted adult and we are so glad that we are not the only ones who think so. If I chose not to, I would not know what would have happened. Tactile defensiveness is remarkably simple to treat, but not if I had remained silent. What you just read is only one story. 1 in 5 people will have a mental health issue at some point in their lives. How many friends do you have on Facebook? Our work is poised to allow other kids to not only tell their stories, but find out how to allow their stories to flourish and prosper in the future. Progress is being made and you should definitely be a part of it.
-RL
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