An ALS Patient’s Perspective

I used to shy away from situations that dealt with difficult human emotions. Funerals were not attended and words of encouragement were left unsaid for fear of saying the wrong thing.

After being diagnosed with ALS, I realized that it didn’t matter what people said. The fact that anything was said at all meant that someone cared. It was a lesson never to be forgotten.

Some of our friends were apprehensive about asking questions about ALS and my condition so we decided to disarm that immediately. When Jennifer and I informed people of my health, we’d immediately add, “There are no stupid questions you could ask or comments you could make that would bother us. Thank you for caring.” The gift of open dialog was given to both parties without any awkward moments.

Gallows or dark humor has become a weapon we use quite often against ALS. With the open relationships we’ve developed around ALS, we’re able to use this weapon without offending or shocking … in most cases.

Getting Started …

My slow progression is an incredible blessing but a bit of a tease. I still find myself with enough strength or energy to start many things. My body allows me to begin, whether it’s cleaning out the garage, wrestling with Christopher or running errands with Jennifer.

Then comes the point of complete exhaustion and fatigue. It is almost like hitting a brick wall, and I feel I can’t take another step or lift a feather. This is extremely frustrating for someone who prides himself on completing the job.

I know that many of my comrades with ALS can relate and some are unable to even start projects or have playtime with children, grandchildren or pets.

My personal challenge will be to keep my positive attitude when my physical capabilities deteriorate even further. I’m confident this will be accomplished through my personal determination and network of support. No matter what stage of this illness I am in, reaching out to others will remain extremely valuable. I know I have much to learn about life and coping with the march of ALS’s attack, but my mental attitude is my biggest ally.

ALS as a Gift

The following paragraph is how I summed up my perspective to an audience of about 300 people at an MDA ALS gala Jennifer and I hosted in Denver recently, where we helped raise approximately $54,000 for MDA’s ALS research program:

“I am not guaranteed tomorrow. No one is. Once I was aware of that fact, my outlook on life focused to the present. I am busy trying to create memories of today that can be enjoyed as part of the past but not lamented. Tomorrow is still to be planned for but not obsessed over.

“ALS has been a gift of perspective to me. Some of us who have experienced ALS may not feel that we’ve been given a gift and rightfully so. It may be difficult to think of a gift as having your body’s complex biological wiring slowly disconnected until you can no longer move. Meanwhile, the mental capacities remain as vibrant as ever, if not more so.

“I have no blame for this disease. It is what it is and what I make of it. My legacy will be how I handled an insidious attack on my being and then used it to launch a mental assault on the disease. That legacy may begin tomorrow, but does anyone really know?”