ALS doesn’t own this, there are too many conditions that fall under this to list. Many physical and so many spiritual and mental. I and my family know of ALS, so I will speak only to that.
The moment the words are uttered, “you have ALS”, even the Dr sounds hopeless, resigned to sending you home to die. So naturally you and your family internalize this pulse of hopelessness thrust upon you. Like a dark cloak thrown over your life, it blocks out all light, leaving you to wallow in the darkness.
Here in lies the moment where you must make a choice. No you can’t cast off this cloak, it is now a part of your life wardrobe, added to the many other “fits”, to use current vernacular, you have in your mental wardrobe. The question then is… do you rotate your wardrobe? Or like current teens, wear the same “fit”, until someone says enough! Like a frustrated parent, ” I’m going to burn those T-shirts”, if you’re a parent you know.
Given that this gloomy cloak of despair is a permanent addition to your life closet, how often do you don it and allow it’s false embrace to comfort you? I can’t answer this, only you can. I personally know it’s there, however for reasons I can’t explain, I just don’t care to wear it, it’s simply not my style. Nothing wrong with wearing it from time to time, I know many who simply can’t take it off. This is when help is needed, if you’re open to it.
I for one, am hopeful. Hopeful for the next moment, the next day, the next encounter. Hopeful for treatments and a cure. Much like rock climbing, with ALS you have to focus only on the next handhold, that next crevice, mentally straining your fingers to hold on. It’s immensely difficult, but don’t forget, if you are blessed to have a good support network, trust your Belay.
Forgive my use of multiple metaphors, they just pop into my brain, lol.
Choose your wardrobe, and as many of us do, let others help dress you.
Trust your Belay, they are there to keep you climbing safely.
ALS is taking my body, one nerve at a time. It started with uncontrollable twitches. An EMG reflected a symphony of indistinguishable static to me, but to the neurologist… a familiar dirge. Since then it continues to take one muscle fiber after another, due to motor neuron death, causing atrophy. With this comes loss of limb function, strength and any semblance of dexterity.
As if to try and scare me ALS leans in and wispers in my ear, “I’m going to take everything from you, even your voice and your last breath.”
Ha! I burst out laughing… are you serious! I have teenagers! ALS cowars back into the receses of my mind, for now.
What is ALS? It is a marathon that you run with Death as your pacer. No rest or water breaks mile after mile. One can only feed on hope and love until you cross the finish line.
Hey folks I have something to share with you as my closest friends; I have ALS…
~What the hell is that?
Well it’s…
~Dude, I’m so sorry, we are here for you. Whatever you need! Let me buy you a drink. This ain’t gonna stop you! We are going to fight like hell! ~ Hey good to see you, how you been? Thanks for joining us, we wanted to meet somewhere your wheelchair could access. Let me get us a round of drinks. ~ Hi, how’s it going, been a bit. You’ve modified your home, is it working out for you? We brought a meal. Oh, I’m so glad you’re still able to eat. Yeah we’re doing good, you know busy and all. How’s the new experimental medication working?
It’s not experimental anymore… just new. Won’t know how it’s working for a while. ~ FB Post: Hey there, sorry we haven’t been by, went on vacation then a huge project at work, you know how it is. Will drop by soon. ~ FB Post: Great seeing you at the walk! You’ve really gotten good at that eye computer of yours. You looked good. ~ FB Post: Dude the pics of your trip are amazing. So glad to see you’re not letting ALS slow you down. ~ Um, hi, I hope you can hear me brother. We are all here…
It’s not anyone’s fault, it is the disease to be honest. Life for all of us continues at the pace our lives require. Friends and even family have a harder time seeing us so vulnerable as our ALS progresses.
In the end we are all just here for each other and that’s all we can do, be present.
If you are a friend of someone dealing with a terminal condition, please visit them. You may just sit in the quiet company of a dear friend. You know what… that’s enough…
(Based on observations of others comments on social media)
ALS takes so much from each of us; those of us living with this disease and our loved ones. At some point, as our eyes are all we have left, they express our desire to be free of this cruelest of afflictions. We each reach this point on our own terms and time. When the time comes our families have to walk the extremely sharp edge of grief and relief, the innate duality that is ALS.
The desire to be present ultimately gives way to the need for rest. It’s not a surrender to ALS. It is in fact our body simply finishing its arduous fight, a fight that took every ounce of our being, every ounce. A battle that our loved ones fought at our side, giving us the strength to endure as long as we do. We must all rest when our time arrives, every single person, regardless of who we are, ALS or not.
Our families don’t ever want us to reach this point, but we do. It’s okay to feel this way; when you feel in your soul that it’s time to rest.
I hope this is not distressing, I only put my thoughts down to help others understand. ALS is a beast, having the strength to endure any of it is a monumental feat. But I (we) and you (loved ones) are so worth the fight!
However you feel, at any point in your journey, that’s OK.
I have ALS, but I am not the disease, nor is it me. My body is in a wheelchair, but my mind and soul are not!
As I reflect on my physical abilities, now dis-abilities, I realized I am still the same irascible, stubborn husband and father. So what has truly changed? My perspective, both physical and mental.
The able bodied world accommodates where it can, most often at our urging. The greatest accommodations though have to come from within. Even from our closest family; those that can accommodate us do stay with us, those that can not, leave us.
Ultimately we have to allow ourselves to accommodate our ALS. Accommodate, not surrender. Because we are not our ALS, we are “Us”, still us, just with ALS.
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. • Diaphragm • Neck • Tongue • Soft palate • Swallowing • Lips • Eyelids
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.
This is a term that for general purposes we use to describe appropriate interactions/actions with and to others. Modesty is frequently associated with dignity, when discussed. We are all familiar with it’s use under this premise. I would like to share another aspect of this term as it applies to ALS, end of life.
Although this dignity or dignified end of life concept has been present throughout all human history, it continues to be taboo. My question is, Why?
Death is very much an integral aspect of life itself. Yet as a society we shy away from this very real and unavoidable eventuality. Fear, narcissism, ego and many other factors feed and add life to the taboo public perception.
Recently the ALS community experienced the loss of two incredible human beings, who defined their dignity. I am not here to discuss anything other than the strength and courage needed to make such a truly personal and difficult decision.
Take a moment to reflect on the many hours of reflection, conversations with loved ones and the tears shed leading to this. Just imagine.
Given that ALS takes everything, dignity is totally dependent on others. I ask that you also take to heart the amount of love and respect for the individual by the family. That is true and selfless love, which is essential for dignity.
I won’t even venture to say “ I can imagine “ the discussions had. Ultimately each person defines their dignity and we who remain cherish their lives and memories, with DIGNITY.
We live surrounded, orbited by those that come into our lives. Most on the periphery, some fly close, even less shift our trajectory. But a few collide with us, forever changing us. Their impact leaving a lasting and enduring impression. When they leave us it hurts, yet we carry on, we must.
Recently we, our ALS family, lost two such persons. Each having left an incredible void in their families lives. Both fierce advocates, more importantly fierce mother’s . Both willing to fight not just for themselves, but for everyone afflicted by ALS.
Sandy, you altered the ALS research landscape by demanding and implementing accountability. Allowing those living with and affected by ALS to contribute directly to the impenetrable research machine. Your voice and presence never diminished by your failing body; when you spoke we hung on to every labored word of yours.
Taya, we met over zoom, and your energy and smile won us over. As we came to know you it soon became glaringly obvious, you were a force of nature. A fierce ALS advocate in your own right in Canada, and an avid fan of the Toronto Blue Jays. We were always in awe of your efforts and your candid perspectives.
I know my life is better for having met both of you. So with broken hearts and broken bodies we keep fighting. Our hearts continue beating with a broken cadence, having lost two resounding notes in our ALS song.
I am waiting for you to practice what you have promised… regulatory flexibility toward ALS treatment’s. I know and understand you have so many priorities, but I hope you understand that it’s very much a priority for me. You see it’s very personal to me, my family and every person afflicted.
I get it, although we are dying, you hold true to your practice of protecting us from potential deadly therapies. I snicker, well because as you know… we are already dying. I’m being polite, obviously.
In the turbulence of delay after delay, the wake takes it’s toll on our hope, bodies and minds. Not to mention our families hearts; so we wait.
However while you deliberate and decide our fate, we will continue to live in spite of ALS. We will continue to encourage, press and help you understand the human price of the science. We, the person with ALS, are the currency; what value do you assign to us? As Lord Farquaad once said… “Some of you may die, but it’s a sacrifice I am willing to make.”
I jest of course, I can because I’m on the inside.
I truly respect the very difficult task you have been charged with, but could you try being a bit more flexible, maybe just a skosh.
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. • Diaphragm • Neck • Tongue • Soft palate • Swallowing • Lips • Eyelids
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.
ALS TEXAS DAD 