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.
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:
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.
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…
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.
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.
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.
Recently I’ve come across those in the ALS community that feel the ALS public conversation is filled and represented by super-resilient personalities. A quick browse of the major SM Outlets (IG, FB, Twitter etc…), will prove this to be true, somewhat. For the most part these are individuals and families willing to put their life out there; primarily to generate awareness and catalyze treatments. I’m in this very category, my lane is more emotional support through creative writing… I’m ok with this.
Does this truly represent the destructive, unrelenting ALS toll on the body, family and the global ALS community. I have to agree it does NOT, if I must be honest.
So what does?
Let’s pull back the curtain for a moment. Potential Triggers The road to diagnosis is extremely frustrating, long and ultimately devastating. This is but the beginning of the assault. So insidious and heterogeneous (different case by case), that one has better luck in Vegas than guessing how progression will happen: fast, moderate, plateau or slow. This simply adds unbearable weight and stress on the person with ALS and the family.
Regardless of the onset, arms, hands, legs, speech, swallowing or breathing, the outcome is still the same, terminal. Let me be blunt, ALS kills everyone that gets it, every single person! The wake of destruction created by ALS is felt by the family for ever; some for generations.
This is what every person with ALS will experience, in no specific order:
Loss of limb function, total loss. You sneeze, you can’t lift a tissue to blow your nose. Walk today, with assistance, to being unable to bear any weight the next day. I believe the term is paralyzed, not a little, but completely.
Breathing, you know that thing we all do without thinking, yeah that disappears also. Some slow, some abruptly, oh and did you know this, the majority of us will die of respiratory failure. ALS literally takes our breath away, our last breath.
Until this happens, we and our families have to endure loss of privacy, modesty and dignity. As much as all those around try to protect our dignity, to the best of their ability…ALS is utterly undignified. Diapers, catheters, feeding tubes, personal accidents. Ok, full transparency… if we live long enough, we will piss and shit ourselves, did you expect a quadriplegic to not poop and pee? Well shit! Some will lose so much muscle tone that they are unable to bear down. Did you know that, probably not.
Do you enjoy food, so do we, ALS takes that also. Prior to loosing the ability to swallow, we experience episodes of choking, not just on food but our own phlegm. Did I mention our diaphragm stops working, essential for pulmonary toiletry. You know…coughing shit up. This in turn leads to weight loss, accentuated by atrophy. Making most of us gaunt, emaciated, skeletal, how’s that for a visual? Not pretty, well ALS, in my opinion, is one of the ugliest diseases.
I will leave you with this.
The person who is diagnosed with ALS, is not the person the family says goodbye to. Not in appearance, perhaps in mind and spirit but not the body. Long gone is every physical attribute that was the loved one. Except the eyes, our eyes will always convey our love for you, my (our) family(s), our world. We can’t live without your love and support, we simply can’t.
This is ALS, but I’ve only scratched the surface; there’s so much more, gross, ugly, uncomfortable, painful. To be honest you can’t handle the truth, you can’t handle ALS, neither can we, but we live in spite of it. My — Continued — quad·ri·ple·gic /ˌkwädrəˈplējik/ adjective
affected by or relating to paralysis of all four limbs; tetraplegic. “quadriplegic patients” noun
a person affected by paralysis of all four limbs. “a car accident left him a quadriplegic”
Paralyzed from the neck down. This is what a person living with ALS will experience; if they live long enough to reach this inevitable conclusion. So please forgive us if your well intended wishes are occasionally rebuffed. Or we may simply smile…graciously.
Many paraplegic persons are a result of injury to their spine. ALS on the other hand is a progressive degenerative disease, where by some unknown trigger, motor neurons die. Translation – the nerves that control movement die. The general public believes that arms and legs are the principle muscles that move. Once diagnosed with ALS you learn there are oh so many more.
All of the above can be affected in too many variations and sequences. The typical prognosis for us is 2 – 5 years. So if it can take up to two years to be diagnosed, how much time does one actually have. Again you have better odds in Vegas than guessing anyone’s prognosis.
Okay let’s get into some of the odd things that ALS causes to our bodies, again some experience these some don’t. Sialorrhea! What the heck is that!? It’s the medical term for excessive saliva, drooling. The drooling isn’t the major issue, although uncomfortable socially, the real problem is choking. Many persons with ALS often aspirate drainage and end up with life threatening pneumonia. Paralyzed and choking on your own saliva, ALS is simply brutal.
PBA, Pseudobulbar Affect; emotional incontinence, uncontrollable crying or laughing. This is a little side hustle ALS has, although this condition can be triggered by a number of neurological conditions and head trauma. So what does PBA do to the person? It literally makes one think they’re loosing their mind. Total emotional breakdowns for no reason or caused by emotionally charged triggers. PBA also causes laughter or giggling for no reason, most often at inopportune moments. Luckily there are medications that can help suppress or control the intensity and frequency.
ALS, three letters that can be expressed in so many four letter words, expletives just don’t do it justice as to how devastating it is. So if you encounter a person living with ALS and their family, consider what they are enduring and realize how strong they are.
Unbeknownst to the person later diagnosed with ALS, their body has in fact been on borrowed time. You see ALS does not announce itself, it creeps in and disguises itself as many other conditions. Thus the reason for a protracted diagnosis, for the majority of persons.
The diagnosis is simply when one is made aware of being on the ALS Clock. But what is the ALS Clock?
I’m sorry to say, I do believe you have ALS.
We need to tell the kids and our family.
My powerchair arrived, I’m so relieved, that last fall was not fun.
Hands are done, what’s next?
How do you mark time since diagnosis?
There is no right or wrong answer, I assure you it’s done with many factors by all of us. The tendency is to focus on milestones, such as those above. Major changes in our physical abilities, loss of function and large equipment delivery. Or by the passing of yet another beautiful soul. Time is the one thing that all people have in common, we each mark it in our own way.
With ALS, in more advanced people, it is quietly marked by rhythmic tones from medical devices. These devices marking time while they generate time for us, ultimate codependency.
Our eyes follow all activities around us, marking time with every move, the caregiver dance; which demands more from the soul than the body. A dance comprised of constant vigilance, constant movement and an occasional breath.
The fickleness of time; unfortunately it doesn’t afford the same courtesy to all suffering from ALS. Some get more than others for reasons unknown. So what to do…?
Savor and cherish every minute, every moment, every day. Painful, uneventful, good or bad, a moment is a moment. Take it in, reflect, wait for the next one… Repeat.