ALS TEXAS DAD

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
TJO

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
TJO

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