How my FSHD progression leads to out-of-body experiences

Many times over the years since the 1989 car crash that nearly killed me, I’ve been asked if I had any near-death or out-of-body experiences while I hung between life and death. I always try to clarify what people mean by these terms.

If we’re talking about my spirit hovering in the corner of a room while doctors and nurses worked to save my life, or entering a tunnel guided by a brilliant light, I haven’t.

However, I was on a wonderful concoction of morphine and Demerol (meperidine) for about seven weeks after the accident, while in the trauma unit. During that time I had any number of alternative reality experiences. I’ll share just one.

There was always a radio playing in my room, as my wife, Wendy, thought it would help keep me calm. But there were many occasions when I thought I was the next DJ on rotation and had to get to the radio station immediately. Given that my legs and knees had just been rebuilt, that wasn’t a great idea.

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That was only one of several reasons why my hands and feet were eventually tied down. Another was that I didn’t like all the tubes and machines attached to my body, so I did my best to remove them.

I recall the frustration of trying to roll over or scratch an itch. My body just wouldn’t respond.

My time in the trauma unit was as close as I ever got to something like an out-of-body experience — until recently.

A brain-body disconnect

A few days ago, Wendy and I were heading out of the house. I currently use a walker 100% of the time when I’m navigating the main floor of our home, but still use a standard cane to get from the bottom of our stairs through the laundry room and into the garage. I made it to the garage with no more than the problems I usually have because of my facioscapulohumeral muscular dystrophy (FSHD).

Once I got to the garage, I sat down, put my shoes on, and struggled back to my feet. I had only about four steps to the van, but these days, even the light tennis shoes I wear feel like cement blocks tied to my feet. A few steps can be a challenge.

After taking two steps using my cane, I got stuck in open space, with nothing nearby to hold on to. I needed to take a step with my left foot. At this point, my mind disconnected from my body. I knew my brain was signaling my foot to move, but the muscles refused to respond.

I could clearly see my body standing helplessly in an untenable position. I knew that, with my balance issues, I’d fall if I stood in that position for long. I also knew that if I could somehow persuade my left foot to try a step, I’d go down immediately.

Wendy was on the driver’s side of the van, but hadn’t gotten in yet. I had to ask for help. She came over and I held her arm to steady myself. My mind reconnected with my body. My left foot did its thing, and I got within reach of the van. I steadied myself, got into the vehicle, and breathed a sigh of relief.

I’m also experiencing this same kind of brain-body disconnect with my right arm. The muscles in my upper arms have gotten weaker and weaker as my FSHD progresses, despite the exercises I do every day. Currently, I can only curl my right arm when holding about 2 pounds or less. My metal travel mug, when filled, is right at that limit.

There have been a number of times recently when I’ve tried to take a drink using only my right arm, but the right bicep has refused to work. Again, it’s like my mind has left my body. I know my brain is sending out the signal to lift, but my right bicep doesn’t respond unless I use two hands. Quite often now, I find myself using both hands to take a drink.

I usually try to end my columns on a positive note, though that seems difficult this time. I know these out-of-body experiences don’t make me unique; sadly, many in the rare disease community have bodies refuse to do what they want them to do. All I can say is hang in there and do the best you can with whatever you’ve got left. I’ll do the same.

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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.