The pain of being diagnosed with ALS is immense, a burden that often feels insurmountable. Yet, within this despair lies the path to resilience. By accepting vulnerability, by allowing oneself to be enveloped in the love and support of loved ones, there emerges a way to endure. It is a journey marked by courage, an unwavering spirit, and a heart that, despite the pain, finds solace in the enduring power of love.
Did you know that as ALS takes away abilities you acquire superpowers, no it’s true. Give me a moment to explain.
As we loose the ability to walk, technology allows us to transport ourselves from one place to another, without walking. No genie and no magic carpet. I use one hand to initiate, others use their chin, their head, their feet, and some, get this, they use their eyes. They move by using their freaking eyes.
What is this technology? A powerchair! An advanced electric wheelchair that can do amazing things. Things like raising you to eyelevel to be face to face with others. I call it standing. They recline, tilt, lay flat and with the right modifications they can open doors and call for assistance. Most importantly a powerchair allows us to remain active and engaged in life. If I close my eyes and throttle to full speed, it feels like I’m running.
Augmentative Communication Devices, what the heck is that?!
Gaze into my eyes, no, I mean eyegaze with my eyes. Eyegaze technology, is by far the coolest. It is a computer that tracks the movement of our pupils. The software translates the movement to coincide with the cursor. The user can choose several options to click the action desired. For example, blink, or dwell time. Dwell time is hovering over the icon for a predetermined time. There are some individuals who are very proficient with eyegaze they have written and published novels and books, freaking awesome, right!
Now eyegaze technology also allows us to make phone calls, email, browse the web and, get this, control smart devices in your home. So don’t upset us, we control things with our eyes…superpower!
There is so much more technology that allows us to, well, LIVE. Live as full a life as possible.
A terminal disease such as ALS creates a chasm between the life you planed and your new life. ALS also creates a great distance between you and your loved ones.
Though you are surrounded by family and friends, the distance grows with every day that passes. You now live a life of attrition. Attrition of physical abilities, friends, voice, family, breathing. The distance grows.
When you meet others with ALS a connection is instantly made, closing the gap you’ve been experiencing. They know…they know.
They know the solitude, the anger, the fear and the gratitude for being present; in spite of death looming. This doesn’t diminish the efforts of loved ones, who are bravely attempting to reach out across the growing distance. They don’t know, not really.
There is nothing that can truly close this gap, this canyon in your life. Yet there is one thing that can connect you with your previous life and those that care for you. And that is your heart. Love can bridge the greatest distances. Let love connect you to life, to living.
Artwork created by Clinton Anderson using AI technology.
Once a person hears the statement, “you have ALS”, a shadow is cast over that individual and everyone close to them. This ominous cloak of uncertainty causes our minds to delve into the recesses of regret. Asking ourselves “why didn’t I”. Why didn’t I, do this, spend time doing, go there, or say…
To this I say, you still can.
As challenging as it is, with the support of family and some creativity, you can. I know, sadly, that for some just enduring ALS is all consuming. If you have the support and adequate resources, including assistance from organizations, do what your heart desires.
I like to say that one must surrender, not to ALS, but to the love and support that surrounds you.
Step out of the shadow of ALS, if only for moments at a time. Grasp the hand being offered, let it pull you out of the shadow and into a warm embrace. With love surrounding you, there isn’t time for regrets.
Here are a few organizations that can help make it possible:
*Artwork created by Clinton Anderson using AI technology.
What is ALS?
It is a neurodegenerative…blah, blah, blah
Do you really want to know? Not the technical or medical jargon, what it really is. Are you ready?
ALS is a sucker punch to your soul. Out of no where bam! You’re on the ground, trying to regain your bearings, as you try to stand. Just as you think you’ve cleared the cobwebs, out of nowhere another blow. This repeats itself over and over until you take your last breath.
All this time you and your family have ringside seats to the most brutal shadow beat down ever witnessed. Your opponent an enigma; here’s the rub, you know your opponent very well. You see your opponent every time you look into a mirror. Yet every blow is still a surprise when it lands.
Yes your family and friends are in your corner, there to support you and cheer you on. Beneath their courageous demeanor is a wreck of a person, barely holding on. But they remain in your corner, blow by blow. Knowing fully well the fight is rigged and it’s a death match.
This is what ALS is.
Ending up in this fight is completely random for most. However some live knowing they may have to tag-in. These metaphors are silly, I know. But they are one way to help understand this…
To those of us living with ALS, it is much more than terminology and medical jargon. We are in fact in the fight of our lives. We need everyone in our corner, we can’t endure without you.
Artwork created by Clinton Anderson using AI technology
Grasping, Grasping, Grasping My grip slipping, slipping, slipping My mind whirling, twirling, swirling What will save me from this free fall What will stall this terminal velocity This beast that attracts with ferocity Everywhere I turn I hit a wall My mind consumed, must find a way My grip slipping every day Voices clamor, I am the way…
Artwork created by Clinton Anderson, utilizing AI technology.
As we and our families come to terms with ALS, life continues its onslaught of the daily minutia. How to deal with the added stress of daily loss due to ALS, and the life that you must continue. It requires adapting and adopting. Adapting to the new you and the new pace of your life. Adopting new tools and interventions, to include professional help.
I wrote this a while ago, but it remains relevant.
Chemical Relationship
Previously in a post I made, regarding having a positive outlook, I was reminded that for many this just isn’t possible. This individual reminded me that it’s not as simple as putting on a smile. For some it takes medication in conjunction with other interventions. They were right obviously, in my desire to express the need for a healthy outlook, I unintentionally marginalized the many who require assistance in reaching a sustainable outlook. For this I did apologize, unintentional or not, it was the right thing to do.
Which brings me to this topic.
Worldwide there is a stigma that needing meds for navigating life’s complexities is considered, well, a weakness. I know first hand as do so many others, it simply and unequivocally takes more strength and courage to seek help.
My family is not immune from this. Having three children who suffered at the hands of their biological parents, we afford them every tool available.
I’m willing to put myself out there to bring awareness. I take anxiety meds, not daily but as needed, when my mind just won’t relent it’s grip on me. I suspect, no, I know I will require more help as my ALS progresses, as do so many others.
ALS is just the personal reason I require a chemical relationship with myself. There are way too many reasons, intimately personal reasons that others require a chemical relationship with themselves; each of them beyond valid. If you don’t understand this, I’m sorry, your approval is not required.
Life with its steep dives and sharp turns requires that we use every tool at our disposal. It is a multifaceted condition, this life of ours; requiring a multifaceted approach to navigating it the best way we can.
Keep your hands and feet inside the ride at all times, for your safety and that of others for this Rollercoaster called…Terminal Velocity.
Disabled girl with a big heart like a superhero. Superhero shadow. Vector Illustration
ALS, The Person Under the Cape
Every Superhero, ultimately in their storyline, reveals what brought them there. Often trauma, struggles and a belief that they can make a difference. Frequently individuals living with ALS are referred to as heroes, for exhibiting strength in the face of death. Resilience, copping with the daily loss of physical functions. Mental fortitude, for the capacity to endure ALS and everything it encompasses.
Yet they, the person with ALS, will be the first to rebuff this notion. Why? Well, because “we” are doing what comes naturally…adapting. As humans we do not cull out the weak or infirmed, for the most part we care for them. As we are cared for, we adapt our minds, allowing to be cared for, although some experience great difficulty with this.
It is understandable, though, why others may perceive us as heroic. Here’s the reason, at least my thoughts of why; others can’t see themselves in our place. So in their eyes and minds, they assign great reverence to those that are. But in all honesty, they themselves would adapt also.
There a few who, for other reasons, are deserving of the moniker “hero”. You actually get to choose who they are, “for you”. You know what is important to you and what a hero is to you. In my eyes, every caregiver, for any debilitating condition, is a hero. I didn’t realize it at the time, but my aunts are my heroes. While growing up, they cared for my paternal grandmother, as she endure Dementia until she passed.
You see the truth is, we are scared, perhaps not of dying, but more so, scared of leaving our loved ones to suffer the loss. Of course with ALS we began saying goodbye the moment we heard the words “you have ALS.”
Hero or not, the term doesn’t matter. What truly matters is that you live your best life in spite of ALS. As persons living with ALS, the moment we opened our eyes when we wake…we are surrounded by heroes. This is what is beneath the Cape, keeping heroes aloft.
ALS is devastating, yes, but do you know that it can and often cause the following.
In some instances it can cause paralysis of facial or bucal (mouth) muscles. Making it impossible to express any emotions that reflect their state of mind.
About 5% of persons afflicted with ALS experience Dementia. A double curse for the patient and family, loosing the entire loved one progressively.
Cramps and fasciculation’s (twitches) on your eyelids, annoying as hell.
The hands will either become flaccid or curl up (claws) and lock into position. Either syndrome is made worse by the fact that the fingers simply don’t work.
Bladder urgency, and in a few instances Incontinence. But really it’s urgency most of the time mistaken for Incontinence, due to physically being unable to make it to the bathroom.
Hot flashes, this can be attributed to the amped up metabolism, due to the nervous system constantly misfiring trying to get the signals to the muscles. This is the cause of drastic weight loss in some, among other factors.
Extreme sensitivity to cold. As the body loses mass, it can not insulate against the cold. Additionally since the person is unable to move, they can not generate body heat to stave off the cold.
Drooling (sialorrhea), as the ability to swallow deteriorates the person is unable to swallow their own saliva. Many also experience an increase in saliva secretion or production.
Chronic dry mouth, due to continuous use of noninvasive ventilation, or the BIPAP used to assist in breathing.
Here is one that is going to compel you to ask to see it, but you won’t. The tongue actually experiences fasciculation’s, those pesky twitches. On examination the tongue will look like it’s wriggling.
ALS the disease that is an enigma mixed with the odd.
ALS TEXAS DAD 