Analytical, Hopeful, or both?

A recent exchange I had with a fellow person living with ALS helped me understand a new perspective. The perspective of someone who is inextricably focused on the analytical truth of ALS. What do I mean by this? Well, the hard truth about ALS is; there is no cure. Scientists are not close to discovering a cure. Yes there are treatments that extend life, by miniscule amounts to the average person, but to those living with ALS, we feel different, well some do.

This individual and I had a very civil exchange, no vitriol, no finger pointing, and mutual respect for each others views. He is angry at the false hope perpetuated from every direction, paraphrased of course. I’m not sharing anything not felt by many. Anger can fuel and drive persons to live. This just isn’t my focus, personally.

He shared, very succinctly, his evidence to support his views, and honestly there is no argument. ALS is horrible, devastating, cruel and yes currently incurable. I and so many are acutely aware of this truth, yet we don’t allow the analytics to be our driving force. But, but…neither are wrong; in this climate of intolerance for others beliefs, we both accepted that our views were simply ours.

Ultimately we both hate ALS and the fact that it will take us from our families. The key difference is what drives us.

My focus is hope, although I’m keenly aware of the reality, I’m still hopeful. Hopeful, if not for m, for those to follow. Despite of all the analytical data, I’m extremely hopeful. I don’t refute the data, I am optimistic in spite of it.

Analytical, Hopeful or both…whatever drives you to live. You are living none the less.

Juan Reyes

Children Of ALS…

The day we introduced you to these three letters, it altered our lives and relationships irrevocably. Regardless of your age at the time, you grasped the gravity, you understood. Your response broke me, not because you cried, but because you didn’t. You responded with a hug and “it’s ok”.

Your strength astounds me, I am blown away by your resilience. I know you cry when alone or with your siblings, asking, why them, why now, why us? I don’t have those answers. All I will say is, let’s make the most of it and create wonderful memories.

I know I’m supposed to take care of you, not the other way around. It was never supposed to be this way. I try not to cry, but I can’t help it when I look at you. My thoughts go back to my feeding you as a baby, now that you feed me. Now that our lives have forced us to switch roles.

Now, instead of talking about your future plans, we have conversations about my wishes; I have to let you know before I lose my voice. Your days now revolve around my needs; instead of spending time with friends, your days are spent caring for me.

Memories flood your mind while tears flow from your heart. My suffering has ended, and yours has just begun. Know this, the pain will never leave, but life will weave into it and soften it’s effect. It wasn’t supposed to be this way.

Once these three letters take hold, they never ever let go…

Juan Reyes (TJO)

Looks Can Be Deceiving…

Yesterday I shared about unintentional or intentional comments that some might say, hurt, when uttered. One being, “you look good”, or “you don’t look sick”, respective our Amyotrophic Lateral Sclerosis (ALS).

So, what exactly do you expect to see, once you are aware that someone has ALS? Someone like Stephen Hawking? Or can you be honest and admit that you have no idea what it is, or what to expect. Don’t get me wrong, we know and understand it’s well intended. You have to realize that outward manifestations, or visible changes caused by ALS can be deceptive. But how, you may wonder.

Allow me to provide some context to the phrase, “looks can be deceiving”, applicable to ALS. Please understand that by the time one is diagnosed with ALS, the damage is already extensive, however barely perceivable. Physical signs could be as benign as a slight cough, or tickle in the throat. In my case, the scuffed toes of my shoes, later identified as foot drop.

ALS is so difficult to diagnose, that it can take up to two years, if you are not miss-diagnosed with MS, MD, Stroke and a slew of other conditions. The experts have to test for everything else and exclude them before settling on ALS. So if we don’t look sick, or decrepit, it’s not us it’s you.

Let’s look beneath the skin to help you understand. ALS as it begins, is imperceptible. Microscopic nerve cells begin to change, what causes this, extensive research has yet to pinpoint this. Eventually those nerve cells die, specifically nerves that control voluntary movements. There are more physiological systems and organs that are affected than you know. We, the afflicted and our families quickly learn this awful truth.

By the time ALS is even considered as a possible diagnosis, thousands or millions of nerve cells have died.


We will not get better! There are rare exceptions of individuals reversing or halting their ALS. Research is underway to understand why and how.

When we do receive the news, there is a huge mental hurdle to overcome, the first of many more to come. If one is able to come to terms with this new reality, I say if because many simply can’t, to include family members and partners. The physical changes and challenges aren’t far behind.

I may look different, being in a wheelchair. I may sound different, or not be able to speak, but I’m still me, we are all still ourselves. Our minds and feelings are in tact, altered, perhaps frail, but still here.

I, we appreciate your kind words, just realize that how we look is not a reflection of the death that is progressing within us. Our families are keenly and painfully aware. As they see us and the nuanced changes in our bodies. Imagine the pain of a person afflicted with a rapid progression, able bodied one day an gone months later.

This is one of the cruelest diseases, don’t add to the pain by being insensitive, be kind In thought, words and deeds .

Juan Reye

Are you kidding me!What did you just say!?

You’ll get better right?
Isn’t it nice not having to work anymore.
Well, you don’t look sick, it must not be that bad.
Didn’t they cure it with the ice bucket challenge?
Your spouse is still able to walk, why do you have to stay home with them?
Your child is young. ALS doesn’t affect young people. Are you sure it’s ALS?

Many persons and family members affected by ALS have heard the statements above. Sadly many have heard this from actual family members, even some caregivers.

What don’t you get about ALS and how devastating it is!?

We have been told we are dying, six months to a year for some, two to five on average for most. How would you handle this news, delivered in a cold clinical setting, in a matter of fact fashion. “We’ll give you a few minutes, but we will need the exam room shortly.”

This is followed by gleaning what your mind can absorb off of the tidal wave of information thrust on us. Coming to terms with ALS is an individual journey, time is not on our side. But come to terms with it we must.

Given how ALS ravages our bodies, how can you be so insensitive as to utter words such as those above. We witness others further in this condition and our spirits break. Knowing our future state and eventual demise, yet we persevere, and so do our families.

All we ask is that you acknowledge our ALS, the fatality of it, and please, for the love of anything you hold dear, don’t be patronizing. If you are, you might end up with broken toes or bruised shins!

Juan Reye

A Surreal Day

You ever have one of those days, the kind that you ask yourself “am I dreaming?” How did I end up here, like “WTF”, no really! Someone please pinch me, well, because I can’t pinch myself.

Well, yesterday was one of those days…yeah that’s it.

Oh, you want to hear more! Ok, hold my beer, I’ll need my hands to talk.

The week had been working up to Sunday the 12th of March. Why, the Texas premiere of No Ordinary Campaign (NOC) at SXSW in Austin. The coordination began as soon as it was added to the film schedule; between I AM ALS, NOC and ALS community members.

Fast forward to the end of last week, the excitement is building as emails, texts and social media posts fly around. Meg and I arranged a meet-up at Terry Black’s BBQ. The invites went out and the time was se, or so we thought. Late in the week we were notified by a certain someone that a private event had been arranged, but to be discreet. In the end, many of the individuals meeting for BBQ were also attending the intimate event celebrating NOC.

Here is what transpired…

The event was sponsored by the Obama Foundation, supporters of NOC and also, due to Brian and Sandra having been staff members of President Obama. At this intimate gathering, Obama alumni and person’s affected by ALS mingled and connected. Two movements in one room, the possibilities for change and hope were palpable, to say the least.

Brian and Sandra, having recently befriended Rachel Platten, acclaimed singer song writer, surprised us with a private concert. Rachel has graciously offered her anthemic “ Fight Song “, to be featured in the film. We were graced by her, as she shared her music; treating us to songs yet to be released. A true gift for those of us present.

When finished, Sandra encouraged everyone to stay a little longer due to a surprise special guest. This elicited a flurry of murmuring as all present speculated who it could be.

Our curiosity was peaked, shortly after patiently waiting a brief moment, we were floored when former President Barack Obama marched in.

Before you ask, no photo ops were possible.

He spoke briefly, focusing on Brian and Sandra and the impact of their movement, and I Am ALS. He touched on the change I Am ALS has brought about in this world of ALS. More importantly, the HOPE that I Am ALS, through Brian and Sandra’s vision, has bestowed on those of us living with ALS.

This I the true message of No Ordinary Campaign, a love story disguised as a documentary. A surreal day capping off a surreal life, life with ALS.

Juan Reye

Words don’t do ALS justice…

A-L-S, three letters that represent so much more than the words they stand for. The slew of words, phrases, and adjectives that these three letters elicit can fill volumes of tomes to rival prolific authors. The web is a maze of words, terms, jargon, and confusion. Rabbit holes abound; therapies, research, supplements, snake oils, watch your cyber-steps.

Words, words, and more words; a deafening cacophony of white noise, none of which affects the ALS, our ALS.

No one can truly understand ALS unless they experience it. Words just don’t hit the mark. Words like…

Trapped! That’s the word that captures all of them. ALS traps us, our families, friends, and anyone that touches its web. A specter no longer lurking in the shadows, it now resides within us.

Look deep in our eyes and gaze at strength embodied. Strength, built on clarity of meaning and purpose, purpose derived from the words listed above. Emboldened by the love that surrounds us to live wordlessly. Our every labored breath, a loud defiant scream at three letters that elicit so much pain.

Juan Reyes

Dear Parents…

You didn’t expect to care for my every need, but here we are. Ever since ALS decided to infiltrate our life, you have been at my side when needed. Your daughter/son in law and your grandkids love it when you visit. ALS has made you acutely aware of your child’s mortality, and your impending grief; you have lost me, your heart knows, your mind hopes.

Now you reprise your roll; feeding me, bathing me, helping me after toileting, lifting and moving me. You cook my favorite meals, dote on me, hover and at times get on my nerves—it’s your love language.

No I don’t want a sip of water, no I don’t have to empty my catheter bag. Thank you but I don’t care for a snack, maybe later. No I’m not upset with you, you didn’t do anything. I’m just really frustrated and angry at my condition, now we both need tissues.

Can I have a sip of water, maybe a snack please. Can you fix my pillow, a little higher, that’s good. I changed my mind, can I go outside for a bit. Please stop bickering, you’re driving me nuts!

I cry, you cry, we cry, alone, together and then alone again. I know you’re suffering, witnessing my decline, but you show up. I see, out of the corner of my eye, your fear, your strength, the love for your child.

Just as I opened my eyes at birth and saw your faces, the first time my eyes could focus, I’m sure it brought me great joy. Now as my eyes fail to focus, I can barely make you out, but I know you are there.

Love you…Thank you.

Juan Reye

Desperate For A Breath

During my recent visit to the VA ER, for my low blood pressure episode. Given that two days earlier I was at a civilian ER, and I was sent home with pancreatitis. Before my medical sleuths chime in about this going against typical treatment plans, I get it. But to be honest I’d rather suffer at home than in the hospital, the discomfort was manageable.

The visit to the VA ER was for a separate medical urgency. The fact that I was having coherent interactions while experiencing the vital signs of a corpse. Clearly I am patient Zero for the start of the Zombie Apocalypse 🧟‍♂️.

Well as they try to determine what is going on, the team decided on a CT scan of my abdomen. Up to this point I’ve had little to no problem with laying flat, seven years into ALS, pretty darn good. Unfortunately, and I will explain shortly, I was unable to complete the CT.

I had begun to experience shortness of breath prior to the CT scan. Reflecting on the course of treatments in the ER, I quickly realized having received two liters of fluid rather fast. Did you know that rapid infusion of fluids can overwhelm the lungs. I informed the nurse, her response, hmm I don’t know, but I will ask the Dr. A minute later she returned and slowed the IV considerably, placing me on 2l of O².

Off I g to CT, transferred to the unit with a very small pad for my head. This is when it starts, a slow sensation of dread. Gradually growing with each exasperating breath, each shallower than the previous. Cresting with a whispered, straight out of Blumhouse horror scene, “I CAN’T BREATH!!” it was the longest 30 seconds of my life. Waiting to get transferred to the bed and having my head elevated. 30 seconds that felt like endless minutes on an empty tank of air 60 feet below the ocean surface.

Twenty minute later my breathing begins to normalize. This is the single worst, horrifying moment of my life. I know that the episode was exacerbated by anxiety caused by the diaphragmatic inefficiency, creating the air hunger I experienced.

I was desperate for a single solid breath just one. This is the reality of ALS, gradual loss with the occasional abrupt reminders that ALS has its own agenda.

That’s all we want, one more deep breath, followed by another, and so on.

Juan Reyes

I Don’t Want To Caregiver Today..

My sleep pattern…interrupted, inadequate and yes filled with dreams of not caregiving. My days are not my own, they belong to them. Who is them you aske? Well if you have to ask you haven’t been affected; my loved one and ALS, that’s who own my days.

Yes, I miss and grieve who I was and my many plans for myself and us. However, and I feel this to my core, I would not change places with anyone…except with you. You don’t deserve this, we don’t deserve this.

Moments of despondency, I see them in your eyes. I also see them in the mirror. They pass, but like the surface of a flowing river, it belies the turbulence below; beautiful on the surface. No one understands unless they themselves wade into these deep waters.

I don’t want to caregiver today, I’m exhausted, but I do. I’m emotionally spent, my soul is battered and bruised, but I’m here. I’m afraid, so are you. We see it in each others eyes, blinking that fear away…for each other.

I don’ want to caregiver today or any day! My body screams this. But I do, “I Do”.

I do because you are my:

I don’ want to caregiver today, yet I do because…I love you.

Juan Reyes

I Don’t Feel Like ALS’ing Today

As a person living with ALS there are days I simply don’t want to ALS. It’s silly I know, but let me explain.

I don’t want to sit in my wheelchair all day, I want to get up and walk. I don’t want my family to help me with every aspect of my new existence, I want to do it myself. I don’t feel like taking a slew of medications, that have minimal effect on my condition. I want to eat without fear of choking, or without chewing the inside of my cheeks.

Today I don’t feel like putting my catheter on, but I have to. You see, if I don’t I will simply piss myself, that would be inconsiderate to my family. I don’t want to but I will, for them and for my dignity.

Today I don’t want my muscles to twitch incessantly, or to yawn in a way that makes my whole body tense up. But it will happen allot. I also don’t want to nap because chewing is exhausting, yes chewing.

I just don’t want to ALS today. So I close my eyes and dream all the above. You have to understand this, only in our dreams do we not ALS.

So I close my eyes and dream…

Juan Reyes