What does this word mean to you? Contact of the physical type? Or a more ethereal meaning, to ”touch” ones life, emotionally or spiritually. What does this mean to someone living with ALS?

It is one more thing we lose and it’s multifaceted. May I share?

With the loss of physical ability comes, eventually, the loss of one’s hands. Pretty obvious, losing the ability to hold anything, to touch anything. I miss holding a book, rustling through a magazine. I miss turning the page of a good book, not to mention the smell of a familiar dog-eared paperback.

Well that’s odd don’t you think?

Ok, this is what I mean…
“Close your eyes, now imagine walking into a used book store. What hits your mind first? The smell! Well for an avid reader this biblio- bouquet (sic) reminds us of imaginative adventures. But I digress.”

Now, the following “touch” is one we all miss as persons living with ALS: human touch. The touch of others, the touch of our loved ones.

But your care requires you to be touched every day.

Yes, however that is clinical contact, contact with a purpose, sometimes hurried, always clinical.

No, I’m talking about, hand shakes, hugs, fist-bumps, high-fives, shoulder bumps, etc…

The most personal loss is the intimate touch of our partner, however this is a double edged sword. Both miss it, both desire it and both are fearful of broaching the topic.

Fearful of hurting the other, emotionally, spiritually and physically. cALS fears hurting their pALS, exacerbating the ALS. Of course I’m talking about intimacy, but this goes beyond just that, that’s another conversation.

As pALS we become “untouchable”, perceived as fragile, breakable. This couldn’t be furthest from the truth. I may not be able to actively engage in physical greetings, but you also don’t have to stand six feet away when you do (barring covid). You see, we still crave and need human touch. Even if it’s a one sided exchange, don’t be afraid, we won’t break.

“OW! Just kidding…lol.

Touch, what does it mean to you?
It means the world to us living with ALS. In every facet of the word…

(Juan Reyes)


  1. Sonia Elizondo · November 12, 2021

    Hoping you are hugged daily. I do not steer away from my dad. I still hug my father even though he is battling ALS with respiratory failure. Hugs to you.


  2. Joanna Morefield · November 13, 2021

    Insightful commentary on touch. Thank you!


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