Raise your right hand and repeat after me: I (name) do solemnly swear…

Throughout history this oath has been repeated time and time again by everyone with the title “Veteran”. An oath to stand side by side with our brethren during times if conflict and peace. We sacrifice family, memories, our bodies and often our lives… for our nation. More importantly for each other, our brothers and sisters in arms.

After our service, whether a term or a career, we hope our service and sacrifices will be rewarded with a good long life. A life we create with the rights and privileges our nation guarantees, through our sacrifices.

What then, when something threatens the life we planned? We turn to the organizations charged with meeting our needs. For the most part they do, however there is always room for improvement. One such threat that eludes resolution is Amyotrophic Lateral Sclerosis, ALS, also known as Lou Gehrig’s disease. A disease without cure or effective treatments, that strikes veterans significantly more often than non-veterans.

So elusive is ALS that the reason or cause of the exponential rate of affliction of veterans escapes all experts. The current treatment plan for ALS patients is and has been palliative in nature. If I may be blunt, this simply means go home and die comfortably.

This is unacceptable! We do not surrender, we do not turn and run. We charge forward, facing the enemy head on, until all we have left is hand to hand combat. With ALS we are in a fight for our lives, engaged in combat with our own bodies and minds.
A new battlefield, a battlefield wrought with landmines that take limbs as if they were actually blown off. The mental toll building every day as our body shuts down, until our mind is all we are left in control of. This is not the life we hoped for.

This new battlefield is an unfamiliar landscape, one comprised of bureaucracy, obstacles and uncertainty. We grapple with an enigmatic enemy within, while also battling institutions charged with helping us. Navigating a maze of fractured institutions much like being sent outside the wire without the coordinates to the target or the necessary weapons to execute the mission.

The sad and disappointing aspect of this new war is that we know there is an arsenal within reach. Yet this arsenal is withheld from us. How can we execute a successful mission with our hands tied? Without the weapons designed specifically for this enemy, ALS. Will our nation stand by as we venture into this new battlefield? What would our nation say or do if it’s service members were deployed to conventional warfare without weapons?

Veterans are being sent into battle with ALS without weapons. We are simply being told; There is your objective, now defeat it without any weapons.

The I Am ALS Veterans Team is diligently working to change this. As ALS is a multifaceted disease, so the Veterans Team is using a multifaceted approach. As a team comprised of veterans with ALS, family members and advocates, it is focused on equipping veterans with the right arsenal. Allowing us to have a fighting chance to defeat the ever elusive enemy… ALS.

TJ&O

(Juan Reyes)

https://iamals.org/action/veterans-affairs-team/

I’ve noticed many comments about feeling guilty for some caregivers regarding their loved ones. This is for you…

🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻

It’s not your fault…

My ALS is not your fault, so don’t take that burden on. Neither is my personal outlook regarding this disease; good, bad or indifferent. I do know that my affect effects our daily life and that of our family. To be honest you are my anchor in this tumultuous see called ALS. Even when the waters are calm, ALS has left us rudderless.

This fear that consumes me, let’s be honest, I can’t put into words, so it manifests in other ways. For this I ask for your patience and daily forgiveness. Some days the fear is a beast that I unknowingly unleash on you.

Let me end by saying this: I can not endure this without you or your love. Your ability to see through the fear and still perceive my love for you is a testament to your kind soul, THANK YOU!

You see none of this is your fault, it simply happened. But I’m thankful for you.

TJ&O
(Juan Reyes)

It takes love to survive ALS, well no one survives it, ok… to endure ALS. Love not just of family, but of friends and the community. Sometimes even though love is needed; cALS of obstinate pALS know this all too well, lol…you know who you are.

Yes there those who believe in their hearts that love is too painful to endure and shun it. Don’t stop loving them, in the end they will realize you never stopped. The fact that you endure ALS secondarily with love in your hear, this is the foundation of your resilience.
Strength and courage to continue take root on this foundation.

Love is not exemplified by grand gesture’s, no, it is in fact represented in the mundane.

In the blowing of a snotty nose, after a sneezing episode.

In the helping after toileting, while making light of such a personal aspect of life.

It’s the fierce advocate that surfaces when needed; to ensure every ounce of dignity is retained.

It’s the last touch before we are cured of ALS…

That’s what love is!

TJ&O
(Juan Reyes)

In honor of Hispanic Heritage Month…

A madresita learns her son has been diagnosed with ALS. Not knowing what it is she consults her commadres (her social group). They recommend the best Curandero (Shaman) in the community. Your son needs to be cured of the Ojó (evil eye).

The Curandero shows up at the appointed time, prepared to cast out the evil befallen the son.

What will you do to cure my son? Asked the concerned madresita.

First I will pray to the saints and ask for their divine assistance. Then I will chant ancient prayers as I bless your son with an egg, drawing the evil into the egg, curing your son of the ojó once and for all.

Now Señora, what did you say your son was diagnosed with?

They said it was the ALS.

Oh, Señora this is bad.
Wit the ALS I will need more than a dozen eggs, I think!?

TJ&O
(Juan Reyes)

On behalf of all pALS and cALS everywhere.

You look at me and ask yourself; they look angry, I wonder why? Then you look back and you notice a smile, such a mixed bag of emotions. ALS is a condition that challenges not just our body but our minds and our emotions.

Many if not all of us p/cALS have a roiling wave of anger just below our outward affect. Many allow this constant flow of anger, much like a river of lava, destroying all in it’s path. Most keep it hidden just below the surface.

So you may ask, why?

Allow me…

I am ANGRY!
Angry because ALS came into our home uninvited and violated our lives. It assaulted our bodies and souls, stealing our future, our family.

I AM ANGRY BECAUSE ALS HAS SHATTERED THE SANCTITY OF OUR LIFE, BROKEN OUR HEARTS AND BODY!
I AM FURIOUS THAT THERE IS NOTHING WE CAN DO BUT WAIT, AS THE SPECTER OF DEATH LOOMS OVER US!

I am exhausted from the weight of this knowledge. My voice, my mind is hoarse from screaming. My soul is in need of a nap, before it collpses…

TJ&O
(Juan A Reyes)

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

I hate ALS!
I effing hate it!

It takes and takes.
It even takes shit you’re not good at.

I love golfing, was I good at it? Hell no! But it was my choice to torture and embarrass myself in front of my fellow duffers.

ALS has taken this from me.

I will never learn to play guitar or piano. I may have been destined to be phenomenal, alas the world will never know, 😢.

I was a good walker also; I could walk from here to there. I could even walk over yonder, wherever that is. But no, ALS had to take that.

Good, bad, it doesn’t matter what you’re capable of, ALS will take it… selfish prick!

TJ&O

ALS and your Ass.

Did I get your attention!?

Here’s the deal, when you sit all day in a wheelchair the quality of the seat cushion is crucial. Not just for comfort, obviously, but to prevent pressure sores. This is the true and more serious reason of the two.

The standard, that I’m aware of is the brand Roho. OMG, what a difference, my toosh is happy. My original cushion sprang a leak and the replacement arrived today.

Ahhhhh… Heavenly

Here’s the reason it’s so comfy; it is comprised of 2″x2″ individual air bladders and is adjustable. It’s also custom fitted to the seat of the wheelchair. It can accommodate: mini-toosh, average toosh and above average toosh.

Yes it’s comfortable, however it is medically necessary, I can’t risk cracking my ass.

Have a good ass day!

TJ&O