Why Discipline Is an Important Value to Learn With Duchenne

When I was a toddler, my parents would sit me up in my highchair in front of a big bowl of broccoli. It was around dinner time, while they were still preparing the food, so I was a very hungry baby.

I could only eat the rest of the meal once the broccoli bowl was licked clean. It became so ingrained in my head that I needed broccoli that in elementary school, I wrote it was my favorite food, much to the shock of my peers and teachers.

I didn’t know then what I know now: that broccoli, despite its bitter taste, is full of vitamins, antioxidants, and fiber. Although I had to force myself to eat it, I was doing a favor for my body, and it would continue to pay dividends later because I still make healthy choices, whether in the college cafeteria, or while eating out with friends or planning my own meals.

My parents have always instilled in me the virtues of discipline and delayed gratification, and as I’ve gotten older and become a real-life adult, I’ve begun to understand why it’s important not only in my professional life, but also in managing Duchenne muscular dystrophy.

Recommended Reading

August 17, 2021 News by Marisa Wexler, MS

FDA Grants Fast Track Status to Edgewise’s EDG-5506 for BMD

I’m a self-diagnosed procrastinator. I like to wait until the last possible moment to write a story, conduct an interview, or write this very column. While I like to think a looming deadline makes me write efficiently and quickly, deep down I know that stretching out my assignments only gives me more anxiety.

So lately, instead of turning on my gaming PC when I know there’s work I could be doing, I’ve been pushing through the temptation of instant gratification and stopping myself from reaching for that entrancing blue LED power button. And on the weekend, when I feel happy about what I’ve accomplished, I’ll enjoy my gaming sessions even more.

That to me is the definition of discipline. It’s hard. I’ve even reverted to having my parents unplug the power cable to my gaming PC during the week because I’m unable to plug it back in on my own. And the more I employ that discipline, the easier it gets and the more accomplished I feel.

This idea applies to managing Duchenne as well. I’m more disciplined in some areas than others.

One example is daily physical therapy. It’s quite annoying to spend 30 minutes at night spread out on the massage table when I could be relaxing, working, or gaming. At the same time, I give this routine a lot of credit for helping maintain my ability to walk because I’m not working against my own taut muscles.

You’ve heard about the dreaded BiPAP before. I’m not at all disciplined in that area, and it is causing me problems. This machine essentially breathes for me at night, which gives my whole body a nice, relaxed rest cycle.

On paper, it sounds great. But when I go to put the mask on, which reminds me of a fighter jet pilot’s oxygen apparatus, I feel suffocated. I have trouble allowing it to breathe for me, plus it’s uncomfortable, so I take it off at night.

Then the morning comes, and I feel like I’ve been run over by a truck. I feel like I have to take a nap during the day, or else I’ll fall asleep at my desk. This could have been avoided if I had employed the discipline I know and stuck with it through the night.

Being disciplined and understanding delayed gratification have paid off in my life. In social settings with my friends, I’m not anxious about the work I didn’t complete when I should have. I have more fun knowing what I accomplished during the week.

Part of the reason I’m doing well is because I’m disciplined with what I eat, how I manage my time, and the amount of rest I allow myself. The lack of it is also the reason why I’m on low power mode throughout the day.

Discipline is not the only reason for my success in dealing with Duchenne. It is just one of the tools in my arsenal, like my faith, friendships, and open communication, which I can use to overcome this terrible disease.

***

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.