The Art of Declaring War on ALS

The Art of Declaring War on ALS
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Upon the death of someone with ALS, a common theme is often invoked. Words such as heroic or courageous may be chosen to characterize the deceased. The disease’s course is invariably described as a battle or fight. The implication is that ALS is a brutal and unscrupulous enemy. In short, it is a postmortem on warfare.

As a conscribed soldier against ALS, I thought it fitting to consult the wisdom of noted military strategist Sun Tzu. Sun Tzu’s “The Art of War” includes a combat doctrine with ALS applicability. It instructs one “to rely not on the likelihood of the enemy’s not coming, but on our readiness to receive him.”

Once war is declared with ALS, the threat of attack constantly looms. I have learned the hard way never to let my guard down. Countless falls, choking episodes, joint sprains, and muscle tears — plus two hospitalizations — have resulted from not heeding this advice from Sun Tzu: “Ponder and deliberate before you make a move.”

Nowadays, I am fanatical in my adherence to that and to the following: “If you know the enemy and know yourself, you need not fear the result of a hundred battles.” I strive to remain current on ALS research. I scour the internet for possible deceleration countermeasures. I continuously assess my condition. I plan and act accordingly. Eating can no longer be spontaneous, carefree, or ruled by taste or mood. Instead, it is driven by tactical responses to situational assessments under a cloud of doomsday avoidance.

Steak, prime rib, and certain raw veggies are now taboo because of my unpredictable ability to fully grind tough-to-chew foods. Frangible items such as peanuts and chips, whose possible accidental dispersion down my esophagus I cannot control, are also no-nos. I have to be positioned properly, not fatigued, and my throat clear of mucus and phlegm. My bite size must be judiciously managed. I must diligently employ purposeful swallowing. I need to be prepared, no matter the setting or audience, to when in doubt spit it out.

Similar protocols govern a fair amount of my day-to-day activities. But while ALS may suffer skirmish setbacks, popular legend is that it has never lost a war. That is a drowning reality. Sun Tzu’s observation that including elements of indirect warfare yields “an endless series of maneuvers” adds buoyancy. When I think of my spirit as an indirect attack agency, the following personal mantra emerges: The combatant who nourishes his soul is never truly vanquished. I may eventually surrender physically, but my spirit can remain triumphant.

Another quote: “The worst strategy of all is to besiege walled cities.” The converse of that suggests that encircling barricades of stout construction would be an excellent defensive tactic. My virtual spiritual safe harbor is enabled whenever I am distracted from the perils of ALS. Reading, writing, interacting with people, listening to music, viewing television, pondering nature, or watching my dog cavort can provide a restorative diversion.  

There are times when ALS maniacally breaches my fortress and its physical toll cannot be ignored. When its existence threatens to trample my spirit. During these distressing onslaughts, I have a panic room that ALS never enters. We all need one. Faith is my impenetrable, inner sanctum. I am reminded of the words of the apostle Paul, the Sun Tzu of the soul: “For when I am weak, then I am strong.” And, “What shall we then say to these things? If God be for us, who can be against us?”

My outlook, attitude, resiliency, and happiness are all byproducts of faith. It reinvigorates me. Without it, I would be a bitter, broken, purposeless, frightened man, and those around me would be miserable. Imagine the meager fight to be mustered by an army of disgruntled and apathetic caregivers. In his listing of the five essentials for victory, Sun Tzu included, “He will win whose army is animated by the same spirit throughout all its ranks.” Attitudes are contagious.

A favorite film of mine is the 1971 biopic “Brian’s Song.” It depicts pro football player Brian Piccolo, who embodied a passionate and purposeful existence even after a terminal cancer diagnosis. The movie ends with a eulogy of sorts: “But when they think of him, it’s not how he died that they remember — but rather how he lived. How he did live!

Now that’s winning the war.

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

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16 comments

  1. Ted M says:

    War should be declared on the BrainStorm company and on the FDA for not making the stem cell treatment open to all ALS patients NOW.
    Shame on them.

    • Dave Reckonin says:

      Ted, the Brainstorm people would love to sell the gloop to all pALS especially as it looks reasonably promising. If they could do so they would make a king’s ransom of money. However if a wider usage brought unforeseen side-effects the commercial liabilities resulting would destroy the business.
      So….snail pace as usual despite all the gossiping about ‘fast-track.’

      • Mike Henson says:

        You obviously are not facing a terrible death by ALS, nor are you aware of the basic facts here. First, BCLI has the ONLY truly effective ALS therapy in Phase 3 trial now, and the only one that has been documented to stop and reverse ALS progression in some. FACT. Second, in America, all companies are motivated by PROFIT. Why would you care if somebody makes a living trying to save lives, especially when people are dying horrific deaths, as they are in ALS? It’s a whole lot better than the “execs” at ALSA who get paid $200k+ per year to do nothing to help and love to put out their “anti-approval of NurOwn” propaganda. Third, this tiny bio-company has been treated like dog crap by everybody from ALSA to the FDA bureaucrats….and even by people who don’t even have ALS. Clearly, people still have a lot to learn about this battle. A lot.

    • Mike says:

      Why the H#LL would anybody declare war on the only company in the world who has a therapy in Phase 3 that can and has stopped ALS progression and even made people better? How is this even remotely smart at all? FACT: BCLI doesn’t even have enough money to finish NurOwn’s Phase 3 trial, so how could you ever expect it to be able to pay for anything else, especially to offer Right to Try when it has to fund the $75K or more (per person) to cover the indirect costs of NurOwn? Federal LAW mandates this, not the company. So we must declare WAR on ALSA and the FDA for not doing their jobs, since the FDA approved Radicrappa without a single US trial, and because ALSA gave not a single dime of money from the Ice Bucket Challenge scandal to BrainStorm! We have all the hard facts at No More Excuses on FB for those who want to learn exactly what to do in 2020 to gain access to treatment.

  2. Cate Prato says:

    This resonated with me today! I sometimes feel guilty for not going to war with ALS, but I see it more as a condition to manage as it constantly changes. More like gentle martial arts. Thank you! I shall be reading The Art of War.

  3. Doug Clough says:

    Excellent article. The original Brian’s Song was impactful on my life also. We saw it with a man my mom dated who was an offensive lineman for Sayers and Piccolo. I learned a lot that night. Mostly about faith and friendships and that grown, tough men are allowed to cry and cry hard.

    I am sort of happy that someone is directing the fire st the FDA & Brainstorm and not other organizations who have no control over regulatory things.

  4. Karin says:

    What an amazing piece.
    After my diagnosis I adapted a pod cast by Jocko Willink to my fight against ALS. I read this everyday.

    You want to get better & live
    Healing is not a quick path & there are no short cuts or cutting corners.
    Its a hourly, daily, weekly fight, that can go on for month.
    A fight you can’t stop, because if you do you know you will die. So stand up against weakness, temptation, distraction & start fighting back with all you have. Giving up is simply not an option. It is involving dedication, hard work & discipline to reach the ultimate goal of getting better, completely healthy & well. You may rest & re-charge but never lay down & give up.

  5. Leslie Hutton says:

    I was too passive but I began to recognize environmental factors that worsen hand weakness so that I’ve been forced to take counter measures. It is a war and I must muster what strength that I have to fight.

    Thanks for posting.

  6. ReasonAndWisdomMike says:

    I do agree we need to do more.
    With funding, awareness and less greed we can get some new therapies for the new 2020 generation.

  7. Mike Henson says:

    So, are each of you fighting the RESULTS of ALS, or are you fighting for ACCESS to existing treatments that could save your life right NOW? And you do know they exist, right? They just won’t let us try them. Join NO MORE EXCUSES on Facebook and meet the pALS who made it OK to get MAD about ALS in 2019, and to fight the status quo for APPROVAL. We need all of your help in the fight for access to new therapies that exist now! And we are close, very close. Our warriors got 3 new bills submitted to Congress in December! We are making progress.

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