Dear Fear

Some of you may remember my “Dear Muscular Dystrophy” column I wrote. I was finally able to put into words the complicated feelings that living with Muscular Dystrophy cultivates. It took me so long to finally do that. Today, I am writing about my fear living with Muscular Dystrophy. It’s something I do not talk openly about too often because, again, it has been hard to put into words what living with that fear my entire life has been like. Here is my attempt to put that into words.

Dear Fear,

You certainly are not a stranger. You have always been there, lurking, waiting to destroy me. Even as a little girl, you were there. I wasn’t able to begin to process you at that point. I wasn’t even sure what I was afraid of at the time. I was just left feeling uneasy and often scared. You were far too much for my young mind to comprehend. A beast is frightening to a child, and that you were.

Most of the time, I have been able to tuck you away. Stuff, stuff, stuff – down you would go into your space I created for you to stay. Sometimes you would resurface, but I would shove you back down. Deep down and close the “door.”

Recently, you have become much more of a nuisance. Before you weren’t tangible; you felt distant most of the time. I could escape you. Now you are just here, breathing down my neck. Trying your best to trap me. It is becoming harder to shove you back down, the weaker my muscles become. The more my strength fades, the more strength you seem to gain. You are desperate to wreck my internal peace. Relentlessly showing up during my quiet moments of calm. There you are. Trying to take over. An evil shadow, just longing to engulf me.

You have changed. You seem much more forceful. Still beast-like. That is scary for an adult, too.

I used to be afraid of the dark. At times, I still am. You feel much like that scary darkness. I can’t see what exactly is happening. What is coming towards me? Terrifying.

You produce unwelcome thoughts in my head. “What will become of me? Will I be left alone? Who will take care of me when I can’t care for myself?” I am supposed to be that person for so many people in my life, not the other way around. Often, I feel so powerless.

Awakened in the night by you, I wake in a panic. I know you need to be managed, but I don’t want to deal with you. I silently pray for you to just go away.

Even in the moments when I do my best and use all the skills I’ve ever learned to manage you, you randomly send me a message. I trip, fall into a counter, narrowly missing hitting the ground. You mix well with pain, like two peas in a pod. My racing heart gives me away. You think you are winning.

But faith. My faith is ready to fight. Not afraid to face you head on. You see, faith is powerful, too. Used correctly, you have no defense against faith. It can render you helpless, like you are trying to do to me. Faith isn’t perfect. It’s something that must be practiced, polished daily. It wavers, falters, and is sometimes lost. But time and time again, I have found it.

When you destroy hope, faith, like a superhero, swoops in and restores it. Where you lurk like an evil and dark presence, faith is waiting to overcome and outshine you at any given moment. There are countless, powerful examples of this in the world. Seemingly impossible situations, ridden with fear, suddenly overturned by the power of faith. Of hope. Unexplained peace.

As the years march on, and my disease progresses, I expect you will be there to greet me daily. Eager to take advantage of my fragile feelings. But there is one thing you have always misunderstood about me: I crave a challenge. I live humbled and courageous. My kryptonite in this lifetime.

In many ways, you are forcing me to live better, with much more appreciation for the little things that have big meaning. You create a sense of urgency that’s meant for harm, but actually is becoming a positive, driving force in my life. I feel the need more than ever to live my life the best I can. Each day, I am grateful. Grateful to walk, grateful for one more evening stroll in the snow, clinging tightly to my husband and my son. My son gently lowering me to the ground to make a snow angel memory.

Plot twist: turns out, you are capable of producing goodness. Does that take you by surprise? I hope so.

Love,
Amy

Until next time …

Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.