The day I stopped walking.

Hi everyone,

This is my story about the day Duchenne Muscular Dystrophy took away the use of my legs. This is a bit of an emotional subject for me.

I stopped walking overnight...

It was August 1991, I was 9 years old. I remember I had to get up in the middle of the night to use the bathroom and everything seemed fine. I climbed back into bed and went back to sleep. That was the last time I ever used my legs. For a couple years before I was gradually losing strength in my legs and walking was becoming increasingly difficult. I was falling a lot and I couldn't climb stairs without help but I could still do it. So in the morning, I tried to get out of bed and my legs were not cooperating and were like "nope we're all done" and I fell back on the bed. I kept trying and I just couldn't do it. I started to cry because I was scared and couldn't figure out what was going on. I called out to my grandfather to come and help me. He came in the room and asked what I needed and I said I can't stand up. He tried to help me up and he was getting me to my feet where I could stand but whenever I tried to take a step my legs gave out and my grandfather had to catch me. My grandfather was becoming emotional because he felt helpless but also he knew this day was coming eventually. I too knew someday that I wouldn't be able to walk but I wasn't ready for that. I wanted to keep being able to walk. I kept saying I wasn't ready and I want to keep walking. He didn't know what to do because my grandmother was out and my mom was working so he tried his best to comfort me and he was doing a pretty good job. For the next couple weeks I used the wall to move around the house and hoping maybe it was temporary. Eventually I gave it up and accepted the fact that I was never going to walk again and I began using my manual chair in the house because the scooter was too big. I adapted pretty quickly which is something I'm good at, adapting. This was one of the many things taken from me over the last 30 years because of this illness. I think it affected my grandparents and my mom more than me. They knew it was coming sooner or later and I did too. It still sucked for all of us though. Being able to walk one day then unable to the next is traumatizing especially to a child.   

People with Duchenne Muscular Dystrophy can't do too much physically but we are grateful for the things we can still do and are grateful to the people in our lives who make us happy. Life is short and we try to share that short time with the people we love and care about. Keep those people close to you!💚

Just a little about my grandfather, Francis. My grandfather was born sometime in 1924. He enlisted in the US Army during the Second World War but, due to being hit in the eye with an arrow as a child, he was discharged because he couldn't aim the M1- Garand rifle. After that Francis married my grandmother Patricia in 1950, had 7 children in the next few decades, and  worked his ass off as an amazing mechanic as well as a couple other jobs to take care of his family. He was a great man who loved me and my mom as well as his other children and his wife. I think the stress of my disease progression may have accelerated my grandfathers dementia and led to the subsequent alzheimer's disease. It was really sad as a child and eventually a teen to watch him slowly lose his memory and forget things that were second nature to him. Eventually he didn't know who any of us were and one time asked me why I was in a wheelchair. He passed away in March of 2000 of pneumonia with my grandmother, his wife of nearly 50 years, by his side in a Veterans Affairs Hospital in Bedford, MA. Grandpa we miss you! Thank you for your military service despite it being short and thank you for your service of taking care of your family!💖🙏

Thank you for reading!