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What My Wedding Day Helps Remind Me About My Life With a Chronic Illness

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I recall the morning of my wedding day. It was a crisp November morning. There was frost on the grass and a cool fall wind swept up the leaves. I knew it was going to be a beautiful day, but I also knew it wouldn’t be easy to make it to the finish line.

My muscle strength, especially in my legs, is like a ticking time bomb, waiting to be reduced to nothing. Just the thought of getting hair and makeup done and getting situated in my dress was a tiring thought. I did make it; I sat during the ceremony and danced through the pain. I ignored the weakness and fought like hell — but I made it. In a way, I was relieved when it was over, but I was happy to have made the memories.

That was seven years ago. I often think about my wedding day in both a positive and negative tone. It was positive, of course, because it was a wonderful day of family and friends gathering to celebrate me and my husband.

However, it also reminds me that no celebration in my life comes without pain and struggle. When my sons’ birthday parties approach, I am eager to see their excitement, but the stress that builds up inside of me is unstoppable. With a party comes entertainment, and with entertainment comes standing. And with standing comes agony.  

On a good day, I have about 5-10 minutes of standing time before I’m in agonizing pain and relentless weakness. On a difficult day, standing to greet guests is just impossible. I yearn for a day where I can celebrate a milestone without having to answer to my body’s dysfunction.

I wouldn’t change a thing about my wedding day. The flowers were gorgeous. My dress made me feel radiant. And the family and friends surrounding us were supportive and comforting. My one wish would have been to have a healthy body that day. I wanted to not just make it, but I also wanted to be able to savor every moment without my physical struggle staring me in the face. If, at some point, I receive a diagnosis and am lucky enough to begin treatment, I will throw a party and live in the moment. I’ll dance like my legs have endless strength and stand, talking to friends as long as my heart desires.  

But until then, I’ll remember my wedding day. I’ll remember that despite what I have been dealt, I have continued to climb the mountain. I will remind myself that during the first decade of this horrendous disease, I have earned my master’s degree, married my soul mate and have two beautiful children.  

I am living my life to the best of my ability, and I won’t let anything get in the way — not even a nagging muscle disease. Another year of battle is another year stronger.

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Originally published: November 3, 2016
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