Michelle Ballasiotes – Growing up as a stroke survivor
Michelle, a stroke survivor, is an American Heart Association/American Stroke Association volunteer and advocate.
Having suffered a stroke before birth, I’ve never had a “new normal”. I’ve only had my normal, which is living with right hemiplegia (right side weakness) while trying to be a typical kid. I realize that my family’s life was changed after my birth, but I don’t really know how many sacrifices they’ve had to make. We never really talked about what “could have been”. For me, going to physical and occupational therapy every week for over ten years was just something my mom and I did. Leaving school to go to doctor’s appointments occurred quite often. I quickly gave up the idea of perfect attendance at school.
When it came to social interactions, those things took some getting used to. I wore a plastic brace on my right leg during my elementary school years. I grew up in the same area until I was 10, so I vividly recall the early interactions of people asking me what that thing was on my leg. I remember was my mom telling me to tell people that it helps me walk better and leave it at that. My friends saw the brace as a part of me and didn’t think anything of it. It wasn’t until I moved to Georgia, right before 5th grade, that I had to start all over explaining my brace to people. At that age, kids were more aware of their surroundings and already had their cliques and didn’t want to be friends with the new girl who wore a plastic thing on her leg. At first, I was very quiet about my stroke and sometimes told people I broke my leg to seem less out of the ordinary.
Two years later, when I was 12, we moved to North Carolina. This time, I decided I was going to be more open about my stroke and tell people that’s why I walk with a limp (doctors told me that I could get out of my brace at that time). I had some friend drama, but things were pretty good in North Carolina. I really found my niche by joining marching band. You might be wondering how I could possibly march and hold an instrument. Well, I didn’t. For concert band, I found that I could play the baritone with my left hand, so I played that through middle and high school. For marching band, I played the keyboard with just my left hand standing with the rest of the front ensemble. My band director was more than willing to find a way to let me participate and for that, I will always be grateful. Band is where I found my best friends in high school.
I made other sports work for me as well. I played softball when I was young, and my dad put a wire through the right mitt so that it could stay open. Sure, I ran a little slower across the bases, and I can’t even remember if I ever actually hit the ball. I decided I wanted to try soccer in elementary school. My mom was hesitant, but she knew it wouldn’t be super competitive at this age. The people on my team were really accepting and I had fun; the only bad part is that I would get a bad blister on my foot from my brace after each game. As I got older, I wanted to get more in to swimming. This was difficult. It was hard to find an adaptive swim team where I could have fun with kids my own age. When I tried out regular swim teams, I would be placed on a team with no one I knew, and I would be the oldest and slowest swimmer. While I do still swim on occasion whenever I can fit it in my busy college schedule, I found yoga with a physical therapist to be the most beneficial. This really helped stretch all my muscles that get tight from my hemiplegia and she knew how to work with me. I’m still trying to find a consistent exercise form that I like doing here at college.
All this is to say, I’ve figured out how to make things work and I’ve been able to lead a normal life. At least it has seemed normal to me. My stroke has resulted in my life and my family’s life being different than most typical families, but it is a life that I wouldn’t trade for anything. I found my passion for health policy and occupational therapy through my stroke and I plan to go to grad school to become an occupational therapist.
If you’re an older survivor or parent just starting out on this journey, I want you to know that just because you might have a new normal, it doesn’t mean that it has to be a negative new normal. Make your new normal a positive experience. Your child and your family will be glad you did. Sure, there will be challenges along the way, but you all will cherish the triumphs you’ve made together. My advice to parents of children that have had a stroke would be don’t hold your child back because you are afraid. Push them to keep trying so that they can take full advantage of their new normal.