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…
Shattered
Atrophy
Emaciated
Breathless
Helpless
Crippled
Trapped

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
TJO

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
TJO

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
TJO

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:
Spouse
Child
Sibling
Parent
Family
Friend

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

Juan Reyes
TJO

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
TJO

So what does ALS look like? It looks like you and me. It looks like your parents, siblings, relatives, friends and folks you haven’t met. ALS also looks like a child, teen, young adults and every age. Look in the mirror, that’s what ALS looks like.

What would help you and others understand the devastating effects of this elusive disease? A slew of medical and scientific terms? Confusing at best? Personal testimonials? The web is rife with them; glanced over and on to the next one. A global viral campaign? Been there done that; over half the participants didn’t know why! I wish I had the answer, it really is one of the worst conditions in existence, a living death.

Everyone affected by ALS puts on a brave face, behind this, in all honesty, is a feverish treading of water beneath the surface. I can only speak about my experience and what other persons living with ALS share, and we do share amongst ourselves.

The emotional toll is crushing, second only to the physical toll, at times emotions are exceedingly more soul crushing. Given that our body is failing, ultimately our emotions are all we have left to engage with. At times they boil over, believe us when we say it’s not you, it really isn’t. We are angry and frustrated with our ALS and our personal physical prison.

So give us a moment, it will pass or subside, I (we) will put on our Brave Face and keep treading along with you.

J. Reyes
TJO

(Dedicated to  Caregivers)

 

I need a hand with pulling my pants up  please.

I need you to hold the glass and straw for me, I’d like a drink.

I could use a shift in bed, can you turn me on my side please?

I’d like to take a nap, can you put my BIPAP on?

I’m done on the toilet, can you clean me now?

I’m feeling anxious today, can I have one of my pills please.

I’m hungry please give me a  shake through my feeding tube.

I’m tired, hold my hand please.

 

I need you for everything.

I need you to live.

I have you at my side…Thank You!

TJO