Legacy of Loss

ALS, a single card in the deck, “00” on the Roulette, what are the odds; you get the idea. It’s Random, as random as it comes. For most that is certainly true. After genetic testing it does turn out I am as random as they come. This bodes well for my children, to say the least.

But what of the small percentage who’s draw from the deck is the same card generation after generation. Familial or hereditary ALS strikes upward of 10% of cases, leading to a legacy of Loss. Not being in this group I can’t imagine the weight this caries. I wouldn’t presume to know, but having engaged with those who are living with this form of ALS, I have observed this.

Resolve, two divergent forms of resolve that is. Both requiring unimaginable courage, the likes of which can’t be put into words..

Some are resolute in their desire to know, understand and expand the science of Familial ALS. Taking on the weight of knowing what is in store, offering their history and anything else to contribute to treatments or a cure. Diving into the deep end of ALS science and research. Living with the knowledge that the switch to activate ALS resides within their DNA. Resolute in their objective; end ALS!

The second form of resolve is completely in opposition of the first. Not oppositional in a combative way, but a different philosophy or outlook. This group of individuals doesn’t want to live knowing if they carry the gene(s) that trigger ALS. They already know it is a legacy the family has. However they want to live their lives unaltered by the knowledge. Should they develop ALS, they will confront it at that time.

Neither approach should be judged, but each have a profound effect on the families affected. One challenge both approaches share is, informing children, if there are any, or if this is a new development in the family history.

Here in is the dilemma; do you inform your children or siblings. If young, do you burden them with this knowledge? There are considerations to be weighed, best discussed with your medical team or a genetic counselor. This is truly personal and weight decision, not easy by any means.

I am deeply saddened by the legacy of Loss you have to endure. I pray a treatment, or better yet a cure, is developed soon to take away the weight of either existence.


Ominous Portents? Nah

My wedding band fell off this morning, while I was being dressed…

Hmm, it just slipped off my finger.

What does this mean?

Well with ALS, only one thing, weight loss accompanied by atrophy. Regardless of rate of progression, there is in fact progression. ALS reminds you of it’s presence abruptly or subtly, like a ring slipping off.

I could dwell on this and lead myself down mental rabbit holes. Or I can move on, adapt and resolve this development.

It’s not some cosmic sign foretelling ominous portents. It’s just a loose ring.

Nice try ALS, but not today!

I’m heading out to get it sized, I’ll think of it as a tighter hug from my wife. So thank you ALS for the reminder that I am loved.

Have a great day all!


I Am…

O, hi there, nice to meet you.

Have a seat!

Who am I, you ask?

Well I am whatever you wish to call me.

But, no pun intended, before you do, let me share “what” I am…

I am independence when I arrive.

I am safety embodied, a relief to you and those around you.

I am the restoration of breezes through your hair.

I am, if you have children/grandchildren, the source of infectious giggles.

I am also a 7 mile an hour thrill ride, when you thought there could be no more.

I am your return to the dance floor at family celebrations.

Lastly my service is complete when you are no longer afflicted.

Charged with your needs in mind, driven by your will, destinations yet discovered.

I am your powerchair!

Hand, chin, feet, whichever way we move, you navigate and eye-drive.

J. Reyes

ALS & Romance…[Warning:TMI Post]

Who said a terminal condition ends romance, not this guy!

Allow me to set the scene.

Wife has finished her morning beauty routine, as she prepares to run errands. I am breathless; at her beauty? Well of course, but also because I just transferred to the toilet.

What did you expect? This is ALS we’re talking about!

Where was I?
Oh yeah, breathless!

Our eyes lock, without speaking a word we say “I Love You”.

I say “see you later”, she replies with reminders to not forget a few things she needs me to do. Translation in my mind… I’ve still got it, she needs me.

The romance is still there!

You see, what I haven’t shared is that while this exchange took place I had…not made it to the toilet in time. My caregiver was in the process of wiping my bum, as a result of my not making the throne in time.

You see, even in the midst of a crappy situation, we focus on what’s truly important, our love for each other, and keeping a good stock of baby wipes.

Have a romance filled day.


Professional Wrestler!

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.


What’s The Point…

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!


I Thought I had more time…

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…


Hi! Here’s a Hug just 4 U

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…


ALS Brain…

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.


And We Dance…

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!