Road Tripping With ALS

The hardest most intense role you never wanted…

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

When we, the ALS afflicted, leave you, you are left with a slew of emotions. Grief takes possession of your life…anger, loss, pain, a shattered heart, yet relief at the end of our suffering, but yours has just begun.

Life continues for you, however you may not feel like it will. Then one day you notice that it’s ok, not great but just ok. And that is enough for today and the next day…And That’s OK!

But what if you want to share your experience and knowledge of ALS with others and help them?

Allow me to introduce you to Jill Brittain, my friend. Jill lost her husband Dave to ALS. Through some very frank conversations during Meg and I’s visit we shared our experiences and lives. What we learned is that at the core of Jill’s being is love. Love for Dave, her children, her In-Loves (my new favorite term). And of course her grandbabies! Beyond this Jill loves the ALS community and is involved in making a difference for those impacted by ALS.

Meg hadn’t engaged with Jill as much as I have, through I Am ALS committee’s/teams. So she was a bit apprehensive about showing up and parking Big Blue in Jill’s driveway. Jill had offered; we weren’t going to roll up under the cover of night and have her wake up to the Clanpet’s in her driveway.

It was late when we arrived, but to our surprise, Jill had a tray of Scooby snacks waiting for us, along with a delectable seasonal local wine, Witches Brew! Needless to say, we were up chatting until one in the morning.

Pardon me as I get emotional at this point. I hope Jill doesn’t mind my sharing. The next morning after a delicious breakfast prepared by our host, we prepared to venture to the Indianapolis Speedway 🏎️🏎️🏎️🦼🦼🦼.

It was a breezy day but not cold enough for a heavy coat. So Meg and I discussed getting a vest. Jill overheard us and shortly after came to the RV with four vests as a gift. I was so touched by this that I simply broke down. You see they belonged to Dave. I was simply overwhelmed…thank you Jill.

What more can I say about Jill, that pretty much sums it up.

From Meg and I…all our love!

J Reyes