Road Tripping With ALS

An Unexpected Friendship

Juan, do we have anyone in Philadelphia to visit? Meg asks this as we approach every major location on the trip.

Yes I respond, I’m getting the details.

Meg asks me “do you know them, and how”?

Nope! Only through Facebook, other than that I know she has ALS.

Here’s the beauty of this adventure of ours; after a few minutes of meeting and sharing we become family.

After concluding our excursion in historic Philadelphia, I shared the address with Meg. Oh it’s not that far…

Thirty-five minutes later, and one hair raising encounter with a low bridge; Meg had to straddle the middle of the road, blocking traffic, to the chagrin of drivers. That’s my badass wife!

As we proceed to meet our new friend, Meg asks “what do you know about her?” As I mentioned before, nada! Meg continues – “so you know nothing about them? They could be luring us to their den of death!?” Yeppers! This elicited a slew of comments about horror films. The dreary weather added to the eerie feel of the evening.

We found the home and after expert maneuvering by my wife, we parked on the narrow street, Big Blue standing out like a juggernaut, lol!

And then we meet Prudence & Stan Runyan. They were so welcoming, warm and gracious.

Oh the life they both have lead, the makings of a best seller each. That is the beauty of meeting new friends, learning who they are. ALS does not take who you are, just your physical abilities. Stan and Prudence thank you for hosting us on this crazy journey called ALS. Our interview is below, pay attention to Prudence explanation of how she let Stan know we were coming to visit…

Stan, the following is dedicated to you.

Dear cALS
(An open Letter to Caregivers of ALS)

I know cALS is a silly moniker, and one you never wanted or expected, but here we are. You are my cALS, my connection to the world at large. If a simple thank you could suffice, I would yell it, were I able to. Alas it is not sufficient, nor am I able to. You are a poorly recognized workforce, operating in the background, often in silence, your compensation…my undying love and admiration.

I know I challenge the very love that compels you to my side. Every day exhausting your body, mind and soul. Knowing full well the only resolution to this is a double edge sword that will leave you shattered yet relieved, there is no word that can describe this adequately, other than unconditional love.

No longer able to express my gratitude using my own voice, I am left with loving you through my eyes. Expressing all of my emotions with a glance, wishing this had never happened, thankful though that I have you.

I could recount the many ways you make it possible to be present, the list would never end. However your greatest gift is your time and touch. Your touch reminds me of better times, of tender moments, our life before ALS. At times I close my eyes and relish those moments and memories. When I open my eyes, you are there, exhausted, stressed, afraid…but present, at my side.

Look closely at my eyes, they are screaming…THANK YOU! THANK YOU! THANK YOU!

//Signed//
Your pALS

J Reyes