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Facing the Challenges in My Life With Limb-Girdle Muscular Dystrophy

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Growing up, I was never very athletic and always thought I was just klutzy. I attempted to play sports in elementary and middle school, but I continuously felt as though I was too uncoordinated to join any type of organized sports team. I started walking on my toes sometime in my early teen years, and then in high school, I found myself falling up the steps.

While I wanted to believe I was just an extreme klutz, there was always something in the back of my mind telling me that I was not “normal.” In 2003, I had the grand idea to start running to get in shape. I didn’t make it a quarter of a block before I was on fall #3 in a matter of minutes. At that point, I began to listen to the little voice inside that knew something wasn’t right. It was time to talk to a doctor, and I knew just the person to turn to.

My brother Paul was diagnosed with limb-girdle muscular dystrophy many years before me. I immediately went to him and said, “Something is wrong and I need to see your doctor.” Paul quickly made an appointment for me, and soon we found out we had much more in common than we ever anticipated. At the time, we were both diagnosed with an unspecified myopathy. It was not until 2015 that we received a firm diagnosis of LGMD 2J (titinopathy).

I find the most challenging factor about living with LGMD is that my mind and my body are just not in sync. My mind says, “Go!” and my body screams, “What are you thinking, you can’t do that.” In my mind, I’m able to climb stairs, wear a killer pair of heels, gracefully walk down the sidewalk, carry groceries and run a marathon. But my body disagrees. I avoid stairs at all costs; I have to wear flat shoes. Simply walking down the sidewalk without someone next to me causes an unexplainable sense of anxiety. Carrying a load of groceries into my house feels like I’m trying to move a mountain with my own two hands. And running a marathon would be as difficult as trying to house-train an elephant. My mind says I am fully capable, but my body refuses to respond accordingly.

I also experience a tremendous amount of fear when I get an invitation somewhere I have never been before – especially if I am going alone. When an invitation arrives to attend an event, I have a meeting for work or have to go somewhere I have never been before, I find Google Earth is my closest ally. I will Google Earth the layout of buildings. Where is the parking lot? How far do I have to walk to get to the front door? Is there a step or a slope at the entrance? Is there anything that could potentially prevent me from navigating the terrain?

Although research is helpful, the fear that comes along with “new places” is only slightly diminished by these preemptive measures – the reality is that there may be an unanticipated obstacle on site once I arrive. For me, that’s when the real fear sets in. Even more so than each of the concerns/fears above, my biggest challenge is admitting I need to ask for help. As the days, months, and years pass, I have realized that the most straightforward tasks have become increasingly difficult. Taking out the trash, changing a light bulb, going up/down stairs without a railing, stepping up onto a sidewalk without something to hold on to, getting out of a chair, even just walking across the room creates a tremendous amount of anxiety.

It’s hard to ask for help when your mind tells you the task at hand is a standard, everyday part of living. I want to prove to myself that LGMD won’t win – that there is a way I can outsmart this disease. When the scary and tough moments arrive, I push myself way too far – I do things I know will ultimately land me in bed and in pain for periods of time. For me, this disease is cyclical. The more I do, the more I hurt. The less I do, the more I beat myself up for not being fully capable – which leads to me pushing my body too far once again.

Many people have asked me what I believe my most significant accomplishments have been since my diagnosis. On a physical and mental strength level, my most notable achievement was completing a 5K Color Run in 2013. I may have said, “I can’t go any further,” more often than I said, “I can do this.” I may have been the last person to cross the finish line – but I started and completed the race without cutting a single corner.

On a personal level, I’m incredibly proud of my recent move. Having LGMD can require a lot of help from others – and as time goes on, this need will only escalate. While I accept this, I don’t allow it to define how I live my life. I recently picked up and moved by myself nearly 900 miles from everyone I know. I left my “muscle” behind, I packed everything up, and I decided I had to truly fly solo to discover just how able-bodied I really am.

Professionally, I’ve been named a Top 100 Women in Maryland and Top 100 Minority Business Enterprise Owner. Maintaining my professional identity as my MD progresses has been a priority for me from Day 1, so I’m incredibly proud of my work. I was also honored to receive the MDA Courage Award in 2016.

All too often, I am met with the question, “How does LGMD impact your life?” Having LGMD has dramatically affected my compassion and empathy for others. I fully understand the meaning of not feeling well. I know that hurting and being in pain on a constant basis can be draining. Although I lose my patience with myself on a regular basis, I believe having LGMD has afforded me a deeper patience with others that I didn’t have before being diagnosed.

With all of the challenges that come with this diagnosis, I work hard to maintain a sense of humor about my limitations. If I’m able to lighten the emotional and physical load on my family and friends (and admittedly, myself), I do my best to with statements like, “Today I feel like an octopus trying to get in a thimble,” instead of “I feel terrible today.”

LGMD has also cultivated my ability to approach situations with creativity. Granting little power to that small voice that whispers “I can’t,” I try to turn everything into, “I may take an unconventional route, but I can do this.” I may not get from Point A to Point B the same way an able-bodied person can, but I’ll find a way to get things accomplished regardless of how outrageous my method is.

If I could share a few things about having LGMD with the world, the very first thing that I would say is that I’m not “an inspiration.” Just because I’m living each day with LGMD does not mean I’m an inspiration to all people everywhere. Could I inspire someone living with LGMD to approach the diagnosis with humor and determination? Sure – but I’m not innately inspiring just because I have LGMD and continue to live my life.

I am a woman who has LGMD, and I am adjusting to my circumstances just like everyone who has to adapt to life’s many challenges. Someone who breaks their arm has to learn how to do things differently for a short period of time. Similarly, I’m learning each day how to adjust and readjust. The only difference between a person with a broken arm and me is that eventually their cast will come off and they will regain full functionality of their arm. LGMD is progressive which means I will always be in a time of readjusting as things progress.

The most important message I can share with others regarding muscular dystrophy or any other kind of physical or mental limitation is not to make assumptions about my (or anyone’s) abilities. Reserve judgment when you see someone who appears “normal” when seated – you never know what challenges that person faces upon standing. When you see someone in a wheelchair or using an assistive device, please do not assume we are hard of hearing, that we need to be coddled, or that we want any grandiose display of sympathy. What you see is our “normal,” and while it may be challenging, there is no need to treat those of us with limitations any differently than you would anyone else.

Please don’t assume I need (or want) help. Living with LGMD means that sometimes I will need to ask for help with seemingly simple tasks. That said, assuming I need help is insulting. Sure, I may not be able to do something as quickly or as gracefully as you desire. But that does not mean I can’t do it. Let me try – if I need your help, I’ll ask. It’s that simple. And if I want to push myself to try something you don’t think I can handle, let me! So what if it doesn’t end well? To me, that’s not a failure. It means I tried – and some days, that is enough.

Most of all, please don’t be afraid to ask questions. Knowledge is power. Knowledge is understanding. Knowledge is compassion. Questions about MD are not offensive. It’s offensive to see you staring at me and knowing you’re wondering what my life is like, and even more offensive to watch as others make assumptions regarding what I must struggle with on a daily basis. Just as I am not privy to what your daily struggles may or may not be, please do not create a vision in your mind as to what hurdles I may or may not face throughout the day. I don’t expect you to understand my challenges. You don’t know – you’ve never lived with LGMD … how would you know?

Ask me anything! Surrounding myself with people who are knowledgeable about MD makes my life a little bit easier, but you can’t and won’t know if you don’t ask. Don’t look away and pity me – introduce yourself and ask whatever burning question you may have. You never know, I might inspire you to be more gentle with not only others but also yourself.

Originally published: October 6, 2019
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