By Dr. Heidi Tarr Henson

Diagnosed with ALS last spring, Heidi Tarr Henson, Ed.D., shares thoughts about her personal journey living with the disease and what real awareness of ALS means to her.

By now everyone knows someone with ALS, don't they? I know seven other people in my small section of north shore Massachusetts, and sadly we hear about someone new too frequently. Last week I was connected to three people who’d just been diagnosed, two of whom are in their thirties. We are a club no one wants to be part of, and I can't help but notice that for such a rare disease it doesn't seem that rare at all. We are well aware of it around here.

Maybe we are what they call a cluster, though my pALS friends and I can't suss out what the common denominator would be, other than granite. This whole section of the coast is built on a big ledge. The radon in granite is known to cause lung disease, but not necessarily ALS.

I was connected to my friend Patti through my dental hygienist who noticed I was limping. When she asked and I told her, she said “Oh my patient Patti has that!” When I went to get my next haircut after diagnosis, my stylist, who I’ve known for years, knew what was wrong. She then told me her husband has ALS and has been living with it for four years.

I first learned about ALS over twenty years ago when I moved home from the Midwest and reconnected with a high school friend. He had moved home to take care of his mother who was dying from ALS. So many times during the week he would get her to bed and then meet me for a beer and conversation that wasn't about illness. Those evenings were his lifeline.

I remember my shock and horror when he told me what it was like to slowly lose every function except your mental acuity, to become trapped in your body. Able to think and control your thoughts, but not the other nefarious business your brain is doing to you, like failing to communicate to your muscles to the extent that they will die from lack of direction. I thought then, and do now, that this is the worst way to die.

I wrote my first article for The ALS Association on being an advocate and how our presence as pALS shows others that we are still people and that we can still live with the disease. I just got back from a cruise to Alaska with my son, surely the last trip we will take together due to my increasingly declining mobility.

I was prepared for how hard the trip would be physically, but not for the reality of others’ lack of awareness. Getting around the cruise ship and finding handicap accessible excursions was rough. I continually was asked if I could walk, ignored, cut in front of, or the worst, condescended to.

One evening, a group of women my age brushed past me on my way to the elevator my son was holding. They pushed right in with him, and once we protested, were annoyed rather than apologetic. I was holding them up. “Fine, go,” one of them said. My favorite comments, both delivered by senior citizen women patting my shoulder, were “Don’t you look pretty tonight?” and “Look at you! I wish I had a nifty scooter like that.” Really?

I’m aware of how much it bothers me to be a source of attention. Little kids love my Go Chair, particularly little boys. When I zoom by, it's “Oh Mom, I want one of those!” No kid, you really don't. Adults are not nearly so naïve. They usually give an apologetic smile, or grimace. If the pity is productive in that they offer help we could use, then I'm OK with it. Hold the door, carry the bag, help push the chair.

Many people on the cruise did help us, and we appreciated it. Friends and family have said they're afraid to offer help to those of us who may need it because they don't want to offend us. This is something I can offer awareness on. There are ways to offer help that are not offensive. If someone is struggling, I think it’s better to recognize them and say, “If there's anything I can do please let me know.” And leave it at that. That way people know you're an ally in their disability. And if you really can or would rather do it alone, no harm is done.

So many people are aware and offer help I will never use. People from my sportsmen’s club. People I know from rowing. From work. Neighbors. I don’t have anything for them to do, or honestly want to hang out with them now when I never did before. But I so appreciate the offer. It makes me wonder about the folks who don’t offer though. I’d much rather be offered help and decline then not have the offer at all. Offering shows they are aware of how much needs to be done. As I told my son before the trip, anything I can’t do will have to be done for me.

ALS is a disability that continually shifts and thus evades the best of your solutions. It demands constant adaptation. Something might work this week, but it won't work the next. I find acclimating to the identity part of it is easier. I spent many years working with disability issues, as an ADA coordinator, community access monitor and chair of a disability commission. I have experience educating people that they should consider the person first, the disability second. 

When I got diagnosed, I could say to my numerous friends living with disabilities, “NOW I truly get what you were talking about.” I don’t add the caveat that ALS is different though. We don't get to live with this disability, and even while still living, don’t get a chance to stay on top of it. All our limbs go, our speech and breathing too. I’ve known many people with spinal cord injuries or strokes who still drive, work, and play certain sports. They have learned ways to lead a full life, even when something has been taken away. We pALS will continue to have things taken, we know not when, of that we are fully aware.

Special thanks to Heidi Tarr Henson for sharing more about her personal journey living with ALS. To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog at als.org/blog.