Exclusive Content

No exceptions: I need to accept my MS issues

By Dan Digmann

I had a mind-altering awakening in the early morning darkness of a recent Thursday.

Like at 2:32 a.m. 

And I’m not talking about a surprise lightning strike that startled me from my slumber or a bad dream that shook me awake and scared me sleepless.

No. It was more of a figurative awakening that left me dumbfounded by the discovery that I have lived somewhat in denial of my multiple sclerosis realities these past two decades.

Here’s how it all went down:

2:27 a.m.

I woke up in the bedroom darkness and peered past my wife, Jennifer, and saw these green-hued numbers glowing on our alarm clock. There was nothing out of the ordinary as I pulled the covers back and stood up to get out of our queen-size bed. 

Standing, I reached out to touch the wall in front of me and used it to guide me to the foot of our bed. From there, I pivoted 45 degrees to my left and reached my right hand up and used the dresser to guide me toward our door to the hallway.

2:28 a.m.

I habitually checked the alarm clock as I let go of the dresser and swiped my hand along the door as it led me into the hallway. I clumsily and gingerly walked the eight steps to our bathroom, all the time using my right hand to touch the hallway for guidance and support. 

Somewhere between the third and fourth step, I paused with a frightening thought: “I think I officially am a wall walker.” I mean, as a person has lived with MS for years, I am very familiar with this term for people who hold on to furniture or walls for the sake of stability and balance. Just like that, what have I been doing these past several minutes? Am I really a wall walker?

I paused in the darkness, turned into the bathroom, opened the door, and turned on the light. Wall walker, huh? Me. I mean, how long have I been doing this? Because, I think I do it every night when I get up to go to the bathroom.

Okay, MS Focus readers. Let me pause here to let you know that this moment is not the aforementioned mind-altering awakening. An epiphany? Of course. But wait. It's coming.

2:30 a.m.

With the bathroom light on, I glanced at the clock (while simultaneously calculating in my head how many more hours I could sleep until the alarm goes off), walked three steps to the toilet, quickly went to the bathroom, and walked over to the sink to wash my hands. I then dried my hands, walked over four steps, turned off the light, and opened the door.

And like that, I paused again. You see what you just did there, Dan? You did all of that walking and held on to nothing. Fear not, you are not a wall walker, you're just using the wall, door, and dresser to guide you in the darkness. Things aren't getting worse with your MS. You just don't turn on the light because you don't want to disturb your wife as she sleeps.

And so I used the walls, the door, and the dresser to guide me through the darkness and back into bed. 

2:32 a.m.

I crawled under the covers and saw these green-hued numbers glowing on our alarm clock as I peered past Jennifer. Wall walker? Whatever. How could I be so silly? It's dark. I didn't want to wake up my wife, so I didn't have any lights on. I just used things to guide me in the darkness. 

I don't ever… Wait. Yes you do, Dan. More often than I think. I am having challenges with my walking. Think about every time I:
  • Insist on using a cart rather than carry a basket when I’m in the grocery store and all I need is a handful of items. I instantly grab a cart for stability.
  • Purposely walk behind Jennifer and her power wheelchair so I can touch it every now and then to hold me steady when I have longer distances to walk.
  • Make sure I know where the next bench or chair is on a route so I can sit and rest my legs.

It was there, at 2:34 in the morning, that I had my mind-altering awakening: I am accepting (open to) the fact that I have MS, but I have gotten pretty good at excepting (excluding or with exception) of its realities.

Let me explain these like this: I accept that the lesions in my brain and the symptoms I have – like numbness in my limbs, fatigue, bladder issues – are because I am living with this chronic disease of the central nervous system. But every time I talk about realities such as stumbling when I walk, tiredness throughout the day, or having to make excessive trips to the bathroom, I acknowledge they could be the result of MS, but I always am quick to make exceptions. Or, more to the point: excuses.

Stumbling? I do have plantar fasciitis. Fatigue? I didn't really get much sleep last night and have been really busy. Bladder issues? Well, I am drinking a lot of coffee and water.

Wall walking? Well, it is dark, and I don't want to wake up my wife. See what I mean about excepting MS?

I never like to overreact, and I take pride in the fact that I pause to process the root cause of problems I'm facing. With this, I am a firm believer in thinking and telling people to never give MS more credit than it deserves. To always cite MS as the root of our evils opens the door to missing other causes that could be treated and fixed.

But by the same token, are there times when MS is the sole source of my issues? Yes, and I now am getting better about being open to accepting (not excepting) those realities.