Lessons From a 39-Year-Old Girl Living With Muscular Dystrophy

Coming to the last year of my 30s has been a wild ride. My body feels ancient, but my mind feels like I’m still a teen. High school feels like it just happened yesterday. I say that even though I realize that my 20th high school reunion is next week, lol. It makes me wonder what I would have told 18-year-old me if I ever got the chance. If I did, I would tell her the following 10 things that I have learned over the last 39 years.  

1. Be More Serious About Your Health: So, growing up with muscular dystrophy, there isn’t really a handbook that tells you when you are going to decline health-wise. It varies from person to person. Some people are like me and start with symptoms as a baby, while others might not show symptoms until they are well into their adulthood. It is a game of odds where you don’t know if you are winning or losing. I was hoping that I would be in my 50s before my body broke down, but it wasn’t in the cards for me. I would tell my younger self to be more active in physical therapy or to get a personal trainer. It wouldn’t have stopped the decline, but it might have slowed it down or at least helped me maintain a healthy lifestyle before my muscles deteriorated further. 

2. Change Takes Action: I had a deep-seated anger for a while about not pursuing a writing career. I went after a graphic design career and hated everything about it. I thought life was over. It wasn’t until a psychologist pointed out to me that life doesn’t end when things don’t go your way. If you don’t like something, then take action to fix it. In my case, if I wanted to write, there was nothing physically stopping me from writing. I could go back to school, take an online class, or just get back in the habit of writing on my own again. I felt silly when the therapist said that to me because it was something so simple and actionable, yet my mind was blown. I wasted so much time thinking negatively instead of looking at all the options I had open before me to achieve my dream. 

3. Pivoting Is A Part of Life: Some experience this more than others. I found that having a debilitating illness forces you to change directions all the time since my muscles gradually started failing me. I had to find a new way to do things. You could see it as a constant hindrance. However, I found that it has helped me to learn to be flexible and adaptable to most situations. Adaptability is definitely important when you are working with people. I would tell myself to utilize it sooner so that the heartbreak would be less painful when my circumstances constantly changed. 

4. Never Stop Trying to Find Your Tribe: It was easier to make friends when I was in school because we all had at least one central location to meet up at. However, when my disability got worse, it was harder to put in the effort to try, and I isolated myself. However, humans are social creatures and need to be around others. Even though my disability prevents me from going out, there are still online ways to find people to connect with. 

5. The Power of “No”: I always hated saying “no” because I hated being in the center of conflict. However, I learned saying no doesn’t mean that you are always being difficult. It is also a way to set boundaries so people won’t take advantage of you. Learning the difference between compromising and setting limits with people is a game changer and can help you grow further as an individual. 

6. Never Stop Reading: Finding time to read was hard, especially after leaving college. I went from reading thousands of pages a week to 0. It was scary how much it was a gradual change instead of something instant. I didn’t realize how much I would miss it until recently. Reading not only gave me access to other words, but also allowed me to explore different perspectives than my own. That is why books are so important: knowledge is power, and it allows you to explore things you wouldn’t have even believed to be possible. 

7. Don’t Limit Yourself to One Thing: Society dictates that we pick a lane and stick to it. I did that for a while and was about to do it on Substack. There are tons of articles that state that you need to focus on one topic in Substack in order to be successful. However, I realized after a while that this wasn’t me. People are not just one thing. Millions of different moments formed who we are today. I love reading, writing, anime, and talking about my journey with MD, and I shouldn’t just have to pick one to talk about. We should embrace variety instead of limiting ourselves.

8. Travel While You Still Can: You never know when your health will deteriorate. When you have the opportunity to go somewhere, take it. I would love the opportunity to travel to Canada, Japan, Australia, and New Zealand. I am not able to do it now, but I hope that one day I can get the chance. 

9. Don’t Stay In A Place That Negatively Affects Your Health: I stayed in places due to fear of making the wrong choice. However, those places made me mentally and emotionally exhausted every single day. It made me realize that staying in a place that mentally, emotionally, or physically breaks you is not worth it. Life should be full of wonder, excitement, and joy instead of dread and existential crisis. It is okay to want better for yourself. 

10. The Grass Is Not Always Greener On The Other Side: I would spend lots of time on social media being jealous of other people’s lives. I felt like I was behind on so much in my adult life. However, I realized that Instagram, Facebook, and other social media only give you a part of someone’s story. You don’t know the hardship that another person is going through or what they have to deal with daily. The only thing that matters is what you can do going forward. Only you have the power to create the future you desire. 

I hope that 18-year-old me would listen to what I have to say and not be scared off like the girl did when her future self sent her a warning on The Twilight Zone episode “Spur of the Moment”. An older woman tries to confront her younger self to prevent her from making a bad decision, but her younger self would run away from her in disbelief. I like to believe that my younger self would have found my advice helpful back then, and I hope it helps you guys too.