Previously posted, but honestly, it can’t be said enough…

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

Wide awake since 4:30, finally asked Meg Jankowski Reyes to get me out of bed at 6. Been a rough week, with nausea and upset stomach. Meds make me useless, hate that.

No breaks for terminal patients, still have to deal with random illnesses.

This month marks 6 years of living with ALS, 6 years. In retrospect, pretty sure it’s more like 7 or 8, took two years to get diagnosed. I’ve already exceeded the 2-5 yrs prognosis.

This brings me to a topic not often discussed in depth, survivors remorse. It simply can’t be avoided, especially when you meet and get close to so many amazing people. You don’t want it to be you, so you fight like hell; yet your heart breaks with every loss.

After 6 years, it can be deceptive to see me, a pathological optimist. I’m sure there are a few folks who wonder, “is he really sick?”, ” Is he still alive, but I thought ALS took you fast”.

My body is dying but my spirit is still kicking ass, that’s the only way I can put it. I still hate ALS and what it does. I hate that I must depend on others, for something as simple as getting out of bed. Yet I do depend on the grace and love of others to live. How can this not make my heart swell.

Yet I am on the same path as those we’ve lost. I mourn their loss but I honor their lives by embracing mine, in spite of ALS.

I hope my fellow pALS can do the same, if not…that’s ok, you are still loved.

TJ&O

These two go hand in hand, in more ways than the obvious. Yes eventually every person with ALS succumbs to loosing their ability to speak. So how is silence in other ways associated with ALS?

Nowadays patient voices are being heard globally due to technology and social media platforms. However in the past patient voices were lost the moment their ability to speak was gone. Their story fell “silent”, their families unaware of the soul shattering silence and hopelessness felt. Hidden behind eyes that observed everything and a mind comprehending all.

ALS is bereft with silence, from patients and families that won’t discuss it. There are many who quietly and privately disappear from life, it is their right to do so. Then there is the deafening silence from the FDA on treatments. Oh that’s right they spoke very clearly when they disapproved two promising treatments.

ALS patients, families and advocates are now breaking the silence. A rising chorus can be heard as it crescendos; it will only be silenced by a cure.

Listen, behind our eyes is our story, can you hear it in our silenced voices.

TJ&O