My Name Is… And This is My Story
Ever since I was young, I knew I wasn’t like the other kids. I always felt alone and had no one to talk to. When you’re growing up with an obvious physical disability and then add an invisible disability, you can’t help but feel isolated and alone.
When I was 13 years old, I learned I was HIV positive. I was at SickKids, a regular occurrence for me, but this time felt different. My dad, a social worker and my doctor were all in the room and there was an awkward tension. It felt warm and everyone was looking at me, it seemed like I did something wrong, but I didn’t know what. I started to smile and laugh a little as you do when you feel a bit awkward. It was uncomfortable, and I didn’t know what to do.
Then the social worker asked me “Why do you think you take medication? Do you understand why you come to SickKids?” I said, “Yah, isn’t it obvious? For my legs, right?” There was a long pause, I felt like I had failed a test I didn’t know I was taking. Then, they asked me if I knew what HIV was. I remember having a puzzled look on my face, almost the same look I got when solving a rubix cube for the first time. It wasn’t just my face, all of me was puzzled. I looked at my Dad, then my doctor, then the social worker. They told me I come to SickKids because I am HIV positive. Like most kids would, I turned to my Dad, knowing he would have the answers, but he didn’t make eye contact with me. Was he scared too? Was he embarrassed? I didn’t understand.
Next, they jumped into what it all meant. It felt like they were giving me so much information at once that I blanked it all out. I didn’t know what to say or do, I just went… numb. One of the craziest things I remember is that I went back to school right after. My life changed in an instant, and I was back in a classroom with a bunch of kids who had no idea.
As a 13-year-old, how do you understand and manage such a massive change? It was hard. Fast forward 3 years and I’m 16 years old. Everything was going wrong in my life. I was feeling depressed. Spending a lot of time thinking about my Mom (she passed away when I was young) trying to understand the things HIV made me feel. I turned to unhealthy coping mechanisms, I started smoking hoping it would help me, but it never did. I started eating more and gained a lot of weight. I felt like I had no one to talk to. I was alone again. Who could understand this?
Then, I was told about The Teresa Group. They had a group for youth who were affected by HIV called Leading the Way. I figured why not? Maybe I could find some people who could get what I am going through. I thought maybe there is hope and I could find my people.
At first, I found it hard to open up. They were brand new to me, I didn’t know them, and I didn’t know if they would judge me or not, even if we had this one thing in common. It didn’t take long for me to realize that Leading the Way was a safe space to share whatever I needed to share. In one way or another, we found ways to relate to and support each other.
Now, they are my tribe. I love them and the friendships we have built. They are the ones I really trust, and I know that I can safely say anything to them. The biggest thing we could share with each other has been shared and is out of the way. We can focus on where to go from here. I have left my self-destructive acts in the past, and I feel better than ever.
Now, I am 17. I have been through three Leading the Way Groups, I got to attend Summer Camp as a counsellor in training, I have stood up in front a group of strangers and shared my experience at The Teresa Group Annual General Meeting. I have found my community. Life isn’t perfect, but I know I am not facing it alone.
Here’s a way that I have found to explain things that have happened in my life. If God sat every human down at this huge poker table to play this large game called Life, and he shuffled the deck and gave out the cards, some people would be extremely lucky and get handed double aces or kings and queens, then others, like me, would get twos and threes, trying and failing to win one hand. I would think “why would God put me in this terrible spot only holding on to a couple of chips?”. I’ve figured it out. He would tell me to keep pushing and find a way to beat everyone in the game. With The Teresa Group having my back, I’m the real winner.
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