What FSH Muscular Dystrophy Has Given Me

Learn, let go, and find beauty in new places
By Meredith L. Huml, Raleigh, North Carolina

As a muscular dystrophy sufferer—I was diagnosed with FSHD at Duke University’s Muscular Dystrophy Association (MDA) Center in 2003—the best advice I could offer someone who is newly diagnosed would be, “Don’t hesitate to educate yourself on your affliction.” Figuring out what exactly you are dealing with and how you can help yourself and your loved ones will make the situation easier to cope with.

Connect with advocacy groups and other patients

Fortunately, awareness of muscular dystrophy continues to grow. Scientists continue to produce more findings, and hopefully one day there will be a cure for every type of MD. As our world becomes more connected, it is easier to read up on updates in research, learn the symptoms and causes of your malady, and connect with others through social media.

Patient advocacy is vital in fighting muscular dystrophy, as it is with any medical condition, especially those with limited awareness and no cure at this point in time. There is always the option of making a donation to organizations that fight against MD, setting up a fundraiser for the cause, or working at a summer camp for children afflicted.

Using your voice is an important tool as well. The Muscular Dystrophy Association provides a page on which you can find your elected officials who pass important pieces of legislation affecting muscular dystrophy patients and their families.

Ask for help when you need it

As a patient, I understand that this disease comes with more than just physical side effects. It can be humiliating, frightening, stressful, disheartening, and confusing. I was diagnosed with depression in high school after I began to accept the changes going on in my body and when I began to try to accept and recognize my limitations.

Even without the daily struggle of coping with muscular dystrophy, it can sometimes be difficult and embarrassing to admit our weaknesses and ask for help when we need it. We want to be independent, we want to take care of things ourselves, we want to say, “I did this for myself. I didn’t need help.”

As the years have passed, I am still learning how to ask for help. I am learning how to undermine my stubbornness, to talk about and admit openly the simple truth that I am physically weaker than most people I encounter. I am learning to offer a compromise when invited to do things I may not have the strength to do, or learn how to tell others I’m going to have to “sit this one out.” And I am learning to watch others run and dance and climb with joy instead of resentment, jealousy, and anger.

Try exploring new pastimes

It is easy to feel cheated when you don’t have the same opportunities, and it is easy to feel excluded.

I began studying dance when I was three years old. I fell in love with it. It was a way to be active in a fashion that I felt coincided with my very soul. It was a way for me to get stress out. I took tap, ballet, hip-hop, and modern/contemporary classes. Being in a studio was like being at a different kind of home.

When I was forced to take a lower-level dance class as a sophomore in high school, the same one I had taken as a freshman, I was angry. I couldn’t physically keep up with the higher-level classes, and it tore at me. I had been a dancer for years and years; I could choreograph a routine in a short amount of time. I knew how to do all the moves and heard counts and beats in every song I heard. I daydreamed routines in my mind and couldn’t listen to a song without wanting to move some part of me.

After sophomore year, I admitted defeat to myself. I stopped dance altogether. I canceled my subscription to my dance magazine and shoved my tights and leotards into the bottom of my drawer. To give up something that seems like your life, something that you’re passionate about, is torturous. It brings about some of the emotions I previously mentioned.

As someone with muscular dystrophy, you are most likely able to relate. To give up something like that, and on top of that, sometimes even simple daily tasks, is a complete life changer. And seeing others accomplish things you wish to as well is frustrating.

Enjoy simple pleasures

There is, however, good news. There is always a silver lining if you choose to look closely enough. You did not choose this. Your loved ones who suffer from muscular dystrophy did not choose this. Blaming yourself, blaming others, and being angry are things that will cripple you even more.

Let any anger you feel serve as motivation for something great, or throw it away. You may be unable to run down the soccer field or climb mountains by yourself. You may have to give up things you find hard to. There are other things you can try, other hobbies you can find.

I threw myself into art and writing, and found that I have somewhat of a talent for both that I am working on further developing. Negative emotions are hurtful, but you can put them into words that others may relate to, let them flow through a paintbrush, or sing them for a loved one.

There is still a beautiful life that you can fit into just as easily as anyone else, and you are no lower than anyone else just because maybe you need help reaching for that cup on the top shelf.

You have a unique perspective as a person with muscular dystrophy. You may possess a greater appreciation of the simpler things in life, or be less judgmental as you understand that all people have their own struggles in life, and that just because you can’t always see or understand them does not mean they do not exist.

You may be more compassionate due to the fact that compassion toward yourself is greatly appreciated, so that when someone asks for help, it might mean the world to them just as my friends piggy-backing me up hills without annoyance or frustration means the world to me.

You may develop better coping skills from having to deal with so much yourself on a daily basis.

I struggled many years with worry about what I later discovered were rather silly things. People who truly love you do want to help you, even if they don’t always know the right way, the right things to say or do. While I was generally embarrassed and felt sometimes annoying, I’ve been told many times things like, “It’s not even a big deal. It’s cute anyway! I’d give you piggy-back rides regardless if you wanted.”

It takes courage to be open. Walking in public places might get you many stares or whispers. I’ve heard countless mentions of how thin I am, or how my gait is slightly off. While it is sometimes hurtful, I’ve learned to either address the situation by using it as an opportunity to politely educate someone, or simply ignore it. What others say of you says more about them than it does about you.

Some people simply haven’t heard of muscular dystrophy. It doesn’t necessarily mean they are uncaring or cruel. A girl I once sat by in a class of mine used to tell me nearly every day that I should eat more because I looked sickly. For several weeks I either laughed it off or mumbled back things like, “Yeah, maybe.”

After a while, I finally mustered the courage to tell her that I was only thin because of my condition, and I actually ate more than a man going through college. Not only did she feel extremely guilty (which wasn’t my goal), but she also learned something new and started helping me gather my things after class, offering to carry my books if I needed

Smile the best way you can

Never take situations like this personally; you are beautiful no matter your capabilities or your appearance. Living with any disease is hard. Muscular dystrophy has posed many obstacles for me, brought many tears, and made me question things I probably normally wouldn’t without it.

I am growing a greater appreciation for muscular dystrophy every day, however odd that may sound. It has taught me compassion, forgiveness, humility, courage, and appreciation. Life does not often go as planned, and we must learn to accept that and use it to our advantage.

So while people telling me to smile bigger has always bugged me due to the fact that I’ve lost some muscles in my cheeks, I urge you to smile in the best way you can.

It is okay to hurt, to cry, to feel sad and lazy some days. It will rain some days. Just remember the good weather, and know that it is coming. Don’t be afraid to let others help you, and don’t be afraid to offer your help to others.

I wish you much peace, plenty of love, and safety in your journey.

Reprinted with permission from Muscular Dystrophy: A Concise Guide, edited by Raymond Huml. Springer 2015.