Turning to prayer when thoughts of uselessness creep in

As I write this column, my wife, Wendy, is undergoing abdominal surgery. I won’t go into details, but it’s a pretty extensive procedure, so I’m concerned. I’d like to be there for Wendy, but due to my health issues, it’s just not possible. Instead, my daughter Jill is with her mom at the hospital.

Wendy and I discussed this weeks ago and came to the difficult decision that I should stay at home. I can’t do anything for her while she’s in the hospital. That’s the job of doctors, nurses, and other medical staff. If there are decisions to be made, Jill has medical power of attorney and can make decisions for Wendy if, for whatever reason, she can’t.

I would just be an additional responsibility that Jill doesn’t need. I want her to concentrate on being there for her mom, without having to worry about her dad.

I can take care of my basic needs in the familiar environment of my home. Everything is within a few steps, so I can get to where I need to go using what I call my “Sherlock Holmes looking for clues” walk. However, if I am in a large, unfamiliar environment, such as a hospital, I’m forced to use a wheelchair. Because of my facioscapulohumeral muscular dystrophy (FSHD), my shoulders don’t allow me to push the chair independently, and the weakness in my feet, ankles, and calves prevents me from moving the chair any distance with my feet. In addition, my blindness makes navigation a challenge, to say the least.

I would be totally dependent on others to get me to the waiting room, restroom, cafeteria, and so on.

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These situations really make me feel the full impact of FSHD and blindness on every aspect of my life. The effects aren’t just physical, but also mental and spiritual.

I’ve written about how much helping and serving others fulfills me, so I’m frustrated that I can’t be there for Wendy right now. I won’t be able to step in over the next few weeks as she recovers to take care of things around the house.

It’s at this point that my old friend “uselessness” makes his presence felt. I hear his voice in my head telling me, “Take a hard look at yourself. Do you see how useless you are? You can’t even help your wife when she needs you.”

This idea has crept into my thoughts many times. It lurks in the back of my mind, waiting until the next time I find myself in a situation like today. Someone needs help and there’s nothing I can do for them. I think this is a common struggle for many people with muscular dystrophy or other debilitating, rare diseases.

As a Christian, I believe in the power of prayer. Prayer time is usually how I start my day. There have been many times when a situation I was praying about seemed hopeless, but against all odds, circumstances reversed overnight.

That being said, I don’t believe that God is a “Santa Claus” kind of figure who will always give me whatever I ask for. Sometimes a “no” from God to a prayer request turns out to be a good thing in the long run.

I’m praying that everything will go well with Wendy’s surgery. I’m hoping that, after some recovery time, she’ll be a healthier person. I’m also praying that my friend “uselessness” will shut up and crawl back into his tiny corner of my brain.

If you ever hear a voice in your head telling you that you’re useless, don’t believe it. None of us, disabled or otherwise, are useless. We all have the capacity to make our world a better place with a prayer, an act of kindness, a word of encouragement, or a smile. I’ll do my best to be there for Wendy in any way I can. I’m not sure what that will look like, but it might be a topic for a future column. In the meantime, I encourage you to do your best to make your home, your community, and the world we all share a better place. If I can do it, you can, too!

Note: Muscular Dystrophy News Today 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.