May is ALS Awareness Month. As I have done for the last 7 years, since my diagnosis, I will share daily. I will do it my way, which is to weave facts into what it’s like living with ALS.

Shattered

Would you remember the details of the moment you were told…

“you are going to die, and there is nothing that can be done to prevent it.”

This moment is seared in the minds of nearly six thousand persons every year, when diagnosed with ALS. Ask, and they can describe the exam room, or the location in their home, if God forbid they received it over the phone. The initial shock followed by undiscernible information relayed by the doctor. Your ears hearing, but your mind not processing it. Your thoughts a blur, your heart racing, and your soul shattered.

Some experience relief at finally knowing what is causing their body to fail. Others, many, don’t emerge from the mental prison that is ALS.

But I’ve never heard of ALS, what’s going to happen, how long do I have? Google or Siri – What is ALS?

“ALS is a progressive Neurodegenerative disease causing death of motor neurons. Patients experience loss of voluntary muscle function, often succumbing to respiratory failure. Currently there is no cure and it is fatal.”

You have ALS. Three words that anchor you to the very moment they are uttered. A foreshadowing of sorts. Foreshadowing of the eventual locked-in syndrome every person with ALS will experience. Trapped in a body that feels, that senses, that is present, alive but not living. A body shattered by…ALS.

TJO

How are you?
Ahhh! If someone asks me that I will scream!

How the hell do you think I am?! My loved one is dying, I’m loosing them a little everyday. I am exhausted, stressed, and don’t have time to put up with nonsense. My loved one hates that they depend on me for everything now. I know it’s painful for them to feel this way. I try to not show my frustration, but it boils up sometimes.

I’m sorry you can’t do… any longer. I’m sorry you’re embarrassed to be seen this way. I’ll be patient and support you. When you’re ready we can move on from this isolation, until then I am here. I personally don’t care what others think or feel, I know who you still are. You are mine and I am yours, that is all that matters.

I know I snapped at you, that was in response to you snapping at me. Neither of us meant the things we said. I know they are in fact aimed at your ALS, we just happen to be in the line of fire.

I know, I know, you do tell me you are fine, but I know you, you’re not. Thank you for being brave for me.

I effing hate ALS!

This sh***y da will pass. But right now it’s okay to feel the way I do, I’ve earned it.
(Dedicated to caregivers ❤️‍🩹❤️‍🩹❤️‍🩹)

Juan Reye
TJO

There are times when I feel alone, on this, my ALS journey, knowing that I am not. I’m sure many of my fellow ALS’ers feel this. However, we are alone in the sense of the growing isolation that accompanies this disease. Alone in the diminished physical capacities we experience, we feel the miniscule nuances daily. We experience major losses alone until our loved ones notice them and remind us of them, with a glance.

We are alone with our thoughts, as they scurry through the crevices of our minds. Like rats scurrying through the halls of a once thriving mansion, now a husk of what it was. Haunted by the memories of who we were, and hoped to be. Our bodies screeching like Poe’s raven; never more, never more. Never more… walking, hugging, speaking, breathing.

Am I alone in these thoughts? I think not.

We al must pass alone from this life, it’s a singular passage. It’s OK to feel alone, nothing wrong with it at all. The pain comes when you feel lonely. Alone, we can create, while our minds wonder countless worlds within. Alone we can inspire others with our creations, inspire the world even.

Lonely, though, is the nemesis of alone. It can insidiously infiltrate the soul and drain you of hope. Lonely is experienced by too many, for a myriad of reasons. Sometimes self induced, most often inflicted.

I can feel alone, but I’m blessed to not feel lonely. I am surrounded by love. I am valued for what I still have and what I’m able to share. Most importantly, I value myself and what I still have and can do.

I wish you fulfilling alone time, and hope you don’t experience loneliness.

Juan Reyes
TJO

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
TJO

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…
A-L-S.

Juan Reyes (TJO)

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.

THERE IS NOTHING,TODAY, TO STOP IT!

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
TJO

(Based on observations of others comments on social media)

ALS takes so much from each of us; those of us living with this disease and our loved ones. At some point, as our eyes are all we have left, they express our desire to be free of this cruelest of afflictions. We each reach this point on our own terms and time. When the time comes our families have to walk the extremely sharp edge of grief and relief, the innate duality that is ALS.

The desire to be present ultimately gives way to the need for rest. It’s not a surrender to ALS. It is in fact our body simply finishing its arduous fight, a fight that took every ounce of our being, every ounce. A battle that our loved ones fought at our side, giving us the strength to endure as long as we do. We must all rest when our time arrives, every single person, regardless of who we are, ALS or not.

Our families don’t ever want us to reach this point, but we do. It’s okay to feel this way; when you feel in your soul that it’s time to rest.

I hope this is not distressing, I only put my thoughts down to help others understand. ALS is a beast, having the strength to endure any of it is a monumental feat. But I (we) and you (loved ones) are so worth the fight!

However you feel, at any point in your journey, that’s OK.

TJO

I have ALS, but I am not the disease, nor is it me. My body is in a wheelchair, but my mind and soul are not!

As I reflect on my physical abilities, now dis-abilities, I realized I am still the same irascible, stubborn husband and father. So what has truly changed? My perspective, both physical and mental.

The able bodied world accommodates where it can, most often at our urging. The greatest accommodations though have to come from within. Even from our closest family; those that can accommodate us do stay with us, those that can not, leave us.

Ultimately we have to allow ourselves to accommodate our ALS. Accommodate, not surrender. Because we are not our ALS, we are “Us”, still us, just with ALS.

J Reyes

This is a term that for general purposes we use to describe appropriate interactions/actions with and to others. Modesty is frequently associated with dignity, when discussed. We are all familiar with it’s use under this premise. I would like to share another aspect of this term as it applies to ALS, end of life.

Although this dignity or dignified end of life concept has been present throughout all human history, it continues to be taboo. My question is, Why?

Death is very much an integral aspect of life itself. Yet as a society we shy away from this very real and unavoidable eventuality. Fear, narcissism, ego and many other factors feed and add life to the taboo public perception.

Recently the ALS community experienced the loss of two incredible human beings, who defined their dignity. I am not here to discuss anything other than the strength and courage needed to make such a truly personal and difficult decision.

Take a moment to reflect on the many hours of reflection, conversations with loved ones and the tears shed leading to this. Just imagine.

Given that ALS takes everything, dignity is totally dependent on others. I ask that you also take to heart the amount of love and respect for the individual by the family. That is true and selfless love, which is essential for dignity.

I won’t even venture to say “ I can imagine “ the discussions had. Ultimately each person defines their dignity and we who remain cherish their lives and memories, with DIGNITY.

J. Reyes

We live surrounded, orbited by those that come into our lives. Most on the periphery, some fly close, even less shift our trajectory. But a few collide with us, forever changing us. Their impact leaving a lasting and enduring impression. When they leave us it hurts, yet we carry on, we must.

Recently we, our ALS family, lost two such persons. Each having left an incredible void in their families lives. Both fierce advocates, more importantly fierce mother’s . Both willing to fight not just for themselves, but for everyone afflicted by ALS.

Sandy, you altered the ALS research landscape by demanding and implementing accountability. Allowing those living with and affected by ALS to contribute directly to the impenetrable research machine. Your voice and presence never diminished by your failing body; when you spoke we hung on to every labored word of yours.

Taya, we met over zoom, and your energy and smile won us over. As we came to know you it soon became glaringly obvious, you were a force of nature. A fierce ALS advocate in your own right in Canada, and an avid fan of the Toronto Blue Jays. We were always in awe of your efforts and your candid perspectives.

I know my life is better for having met both of you. So with broken hearts and broken bodies we keep fighting. Our hearts continue beating with a broken cadence, having lost two resounding notes in our ALS song.

J Reyes