I never imagined that at this point in my life I would be a professional wrestler, but here I am, sans tight shorts and knee high boots.

What are you rambling on about now TJ&O? You are not a wrestler!

Oh really? Well let me splain.

On the day I was diagnosed with ALS, I grappled with that knowledge, “wrestling” with the concept, “I have ALS”. Here’s the big realization one quickly comes to…there is no tagging out! Yes there may be a team in your corner, but there is no tagging out. It’s simply you and your opponent, El Enigma, aka The Warden, aka The ALS’er, who’s record is unmatched-undefeated.

Regular re-matches take place in the Arena known as “The Clinic”. You try a variety of regimens to give you an edge over your nemesis, but victory eludes you. Your body paying the price for this ongoing duel, every skirmish taking a piece of you.

The turnbuckle is at your back and you’re facing the opponent as he is charging towards you. You stand your ground, knowing the impact is imminent, no time or energy to sidestep. You take the bone rattling blow, fall face forward trying to catch your breath.
“Just let me lay here for a moment” you say in a whisper to yourself.

El Enigma, pounces once again, flips you like a rag doll, pins your shoulders…1 – 2 – 3!

The match is done, you drag yourself off the mat and out of the ring. Knowing full well the next match is already on the ticket, with the same opponent.

No fanfare, no adoring fans, just you and your team in the locker room. The lonely life of an underdog professional wrestler.

TJ&O

You have ALS…blah, blah, blah, go home tell your loved ones and wait to die.

I know this is not accurate, not what actually transpires, but it’s what we hear, in between snippets of figures, prognosis, and a laundry list of resources. What we don’t hear, YET! Is, this is how we’re going to treat it. Or, this is how we’re going to help you live with your ALS. This is when our journey begins, and the first question pop’s up, why me? This, after reflecting on the gravity of our new trajectory, is the second question…what’s the point?

It’s okay to dwell here for a bit, it’s a healthy response. Once you’re ready, take a good look around you, a really good look. Are there individuals in your life who would be devastated at your loss? Many will seriously believe, no there aren’t, there’s no one. So sorry you experience this, just my humble and naïve belief, no one is completely disconnected from other humans; someone will be effected if you are no longer present.

So what do you see? When you look around, after asking yourself, what’s the point? Do you see loved ones, friends, acquaintances, strangers even? Do you still have dreams, goals, desires? If you see those extensions of your life and have things yet to do, then that, that “ is the point”!

The “point” is not an elusive treatment that may never come. We can hope and champion these developments as they arise, but they are not the “point” of remaining alive. The connections, relationships, love…these are the “point”. And ultimately these individuals, if they truly know your heart, will understand when you decide that it’s time to rest. Respectfully and regrettably, they will understand.

Love, connections and the void we leave behind are the POINT!

TJ&O

We went home after the neurologist gave us the news that has altered our lives. All I could think of on the drive home was how much time do I have? The doctor said 2 to 5 years; will it be less, 2, 5 or more? Who knows!

It’s been a year, now I can barely walk, I thought I’d have more time before needing a wheelchair.

I can’t use my hands any longer, now I need help with everything from eating to dressing. Worst of all to me, no more hugging my family. I thought I’d have more time to “hold on” to my hands.

Can you hear me or understand me in between the BIPAP puffs to fill my lungs? I know it’s hard to understand me and to wait for me to finish. I have so much to tell you, so much I want to say, I thought I would have more time to say how much I love you.

I dream of walking, running and dancing with you. I dream of moments we’ve had together. I want to live there, in every beautiful reflection. I know deep in my soul what this is…my time.

Time is elusive, no matter your grip, it slips through us all, taking a piece of us. Like grains of sand in an invisible sandstorm. Whirling, churning, connecting all of us if but for a fleeting moment.

Make time to catch a grain of life while you can, all it takes is your heart…

TJ&O

I wish I could reach out over cyberspace and hug, hold hands, re-afirm, just be there.

So many threads of despondency, hopelessness and sheer frustration. Nothing any of us say alleviates this for you, nothing.

We want to scream along with you, At times I imagine many of us are in fact screaming in unison unaware of the deafening chorus it would create if heard by all.

The thought of hearing…

Hang in there

Catch your breath

Have faith

This will pass

Can be insulting, if not for the fact that they are truly well intended.

There is nothing that will help, only time, of which we experience independently.

I wish you well…

TJ&O

I don’t forget things, well not more than usual, my wife would argue though. I’m not in a fog or confused, often. I do occasionally experience an overwhelming sense of doom, AKA anxiety. This typically follows hyper focussing on my illness, not healthy but it happens.

On occasion I can sound as though I’m either very tired or drunk, yeah drunk. Allot of pALS are thought to be drunk due to dysarthria, difficulty speaking. Obviously we are not drunk, well not always, lol.

You see it’s our brain, our brain on ALS. As our ALS progresses it effects the soft palate, the tongue, neck muscles and other structures affecting our voices. So you see it’s our brain on ALS, so don’t do ALS.

It’s not enough that ALS takes our voice, it makes us look and sound like drunkards. Damn this disease, it strips us of so much while creating an outward visage that belies our true self.

So have a drink, or not, it doesn’t matter, strangers will think you’re drunk anyway.

TJ&O

Every night, before going to bed, I dance, I dance with the love of my life. This is not a dream, fantasy or metaphor, we actually dance. Is it a Tango, no, is it a Waltz, no, how about a Two Step? You are from Texas after all.

No it’s none of the above, with my ALS, sadly I was unable to do those even before my illness, lol. No I call this dance the Transfer Shuffle. It’s a delicate, truly intimate dance between my wife and I.

It starts with positioning the powerchair near the bed, followed by raising the chair to standing height. I then shuffle to the edge and stand up, yes I still can. This next step is crucial, my wife takes my hands. Grasping at my wrist while I do the same, now the dance begins…I initiate with a slight hip thrust, needed to have my leg and foot follow, sometimes the move is imperceptible, so I repeat. This is followed by repeating with the alternate hip, leg and foot. In response, my wife follows my lead by shuffling in the opposite direction. It sometimes appears as though we are swaying. These dance steps are repeated until I reach the desired position adjacent to our bed.

This then is the conclusion of this intimate interlude; we have danced as we do every evening. Hands interlocking, eyes focused on each other, every move dictated by the rhythm of the music in our hearts and souls. The very last step…a kiss goodnight.

And we danced!

TJ&O

Just like a nefarious antagonist in your favorite book, show or movie, ALS is now embedded in your storyline. Waiting for that moment where the soundtrack slowly builds to the jump out of your seat shudder! Aha! There it is, ALS, reminding you “it ain’t over till the credits run”.

This is the motivation for ALS, the core of the character; occasionally melting into the background, just an extra on the set. Suddenly propelling itself, making you jump and toss your proverbial popcorn. Reminding you…I’m still here, like a whisper in your ear, yet no one is there—creepy.

My ALS jumped off the screen last night, I’m not a fan of popcorn, so in this case my Raisenets went flying! Having gotten home late after a full day of travel, I was prepared for bed by my wife. Typical routine, but when I stood to transfer to bed, which I still do with my walker, my legs froze. There was that whisper…”I’m still here, this is your reminder”. ALS had just stolen the scene, my legs simply would not respond to my mental commands.

As my wife attempted to help and stabilize me, my legs decided, we are done! I collapsed onto my walker, which rolled away under my weight. Down I went, legs crumpled, left shoulder striking the floor right before my skull decided to test the durability of our tile floor. I distinctly recall the sound of a coconut being struck resonating in my inner space. The shoulder prevented me from cracking that coconut!

As I’m laying on the bedroom floor, my first thought was; my ninja reflexes once again save me from a trip to the hospital! Followed by; I’m glad I went pee before falling. Of course my wife, calm as can be, “are you okay?” I heard your head hit the floor.
I replied, “tis merely a flesh wound”, to which she replied, “you’re fine”.

–And Cut! End Scene!

This has been a reenactment of actual events, no pALS we’re severely injured, perhaps a bruised ego at worst.
ALS
Always Lurking & Stalking

This has been a TJ&O Production ©

I don’t know what’s going on, I keep dropping things and my hand looks thin.

Now I know, it wasn’t my clumsiness. My neurologist called it ALS? What the hell is that, I don’t understand.

A crash course in all things ALS. Not what I expected; came out of nowhere!? What now? It’s good to know what we are dealing with, but I don’t know what to do next.

I don’t know what I will lose next, my hands won’t do what I ask of them any longer. It has helped me to meet others with ALS, now I know what to expect and it scares the hell out of me.

We’ve talked about what is to come, we don’t want to know, yet we already do. What we don’t know is when or how, and I’m ok not knowing. The one thing I know for certain, is that your love and support makes enduring ALS bearable, this I know in my heart.

TJ&O

It’s all about our mindset.
Nothing wrong with a little levity…

I’m too sexy for ALS!

Allow me to illustrate how ALS has made me more attractive, I’m not trying to be vein it’s just a fact. Since being diagnosed my wife, can’t wait to shower me, this never happened before. She dotes on me more than ever, she just can’t be away from me for too long; except when she goes to work all day, goes away on business, go shopping all day, goes out to special events with her friends, and spends hours in her craft room. Aside from those instances she’s at my side constantly.

I also believe my fashion sense Garners more attention then before. I call it casual chic. It consists mostly of loose attire with elastic waistbands and loose-fitting tops. It conserves energy by allowing me the ability to still manipulate these articles when encountering certain necessities. Some folks call it sweats and t-shirts, but what do they know about fashion. It could be this that Garners more looks when I step out or it could be the liquid sexy Spritz I get everyday. Others know it as cologne but I call it liquid sexy…

Now as I just mentioned above I get a lot more looks when I am out and about. Who knew that a power wheelchair could enhance one’s appeal. As I roll around in public I noticed out of the corner of my eye more glances in my direction, is it me or my chair. I choose to believe that it’s me. So you see it’s all about your frame of mind. Not to mention that the biggest indicator is the fact that strange women approach me in public more than before. Yes they come to me and share how they knew or lost someone with ALS, so they say…

Of course I jest, if you can’t find humor in the worst situations what point is there?

In reality ALS patients are beautiful people. As this disease ravishes the body all previously existing outward physical attributes are lost. What you have left is the true essence of an individual. Stripped Away is the facade of who we used to be. You are left with an individual who’s soul has been shaken to its core, someone who has come to terms with their mortality and is at peace. What is left is pure resilience and will to live. What could be more beautiful then this.

So you see, I’m too sexy for ALS… We all are!

TJ&O

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

(Juan Reyes)