Anger (Mis)Management: Seeking an Object of Blame for ALS
“We have met the enemy and he is us.”
One day recently, I became incensed. My anger was not your garden-variety ire; I experienced the kind of rage that blinds. The cause of my eruption was the coincidental convergence of one understandable producer of angst, with one unlikely accelerant.
I had learned that morning of the death of a friend. Although we had never met in person, we were drawn together by one of the “ties that bind.” She had ALS, and that’s what killed her. Among the ALS band of sisters and brothers, the breaking of such sad news is not uncommon. It occurs often enough that I have developed an emotional callus, insulating me from overreaction.
As I mourned my friend’s passing, a song came on the radio. Written by The Who’s Pete Townshend, it depicts an overly smug and arrogant chap, with the refrain:
“Just wanna to be misunderstood / Wanna be feared in my neighborhood.”
That is ALS. Suddenly the metaphoric imagery of a skulking, elusive bully, preying on innocent victims, caused my blood to boil. The song appears on the release “Rough Mix.” Both the lyrics and album title are apt descriptors for the ordeal that is ALS.
Rough mix
From the crushing diagnosis to the inglorious conclusion, ALS is a turbulent concoction of trauma. Your fellow sufferers are a principal agency of support. In the Bataan Death March that ALS can resemble, to have your comrades fall is both a loss of a source of comfort and a reminder that you may be next. Rough stuff, indeed.
Misunderstood
Researchers are uncharacteristically baffled by ALS. In a review of 20 years of advanced-phase ALS clinical trials, post-riluzole availability, over 60 molecules have been investigated as possible treatments. In trials that had recruited at least 100 patients, more than 10 different broadly defined mechanisms of action have been studied. This points to the extraordinary complexity of ALS.
The authors stated, “Even though academic science has made significant progress in attempting to elucidate molecular, genetic, epigenetic, and environmental aspects of motor neuron degeneration, the slow translational progress … suggests that existing preclinical models are not fully representative of human disease process.” That there has been scant treatment advancement, for the fiendishly misunderstood ALS, should not surprise.
Fear and fury
During my recent hospitalization, I experienced an unexpected phenomenon. Every staff member I encountered, upon learning I had ALS, reacted with unmistakable revulsion toward the disease — this from folks who view tragedy every day. The over-the-top deferential treatment that I received, subsequent to their discovery, was welcome, but also transparently telling.
Likewise, when encountering someone face to face for the first time, they become curious about what landed me in a wheelchair and rendered me a near-mute. The usual suspects include stroke, car accident, or military deployment. When they learn that the culprit is ALS, the outpouring of horror and sympathy is overwhelming — as if the cause of the infirmity is worse than the plight itself. ALS scares people, even those unsusceptible to fright.
That was the backdrop of my fury. But with what or whom was I cross? To be angry at ALS seemed an exercise in futility. As I pondered that question, I recalled the deaths of my parents in the 1980s. Both succumbed to smoking-related illnesses. When my grief briefly morphed into anger, it wasn’t cigarettes, heart disease, or cancer that was the object of my wrath. It was my mom and dad, for opting for tobacco. With ALS, no such venting outlet is offered.
Neuroscientist Lisa Mosconi, associate director of the Alzheimer’s Prevention Clinic at New York’s Weill Cornell Medical College, believes that “genes load the gun, but lifestyle pulls the trigger.” That claim presupposes an awareness of the consequences of behavioral and environmental choices. With no known cause, “misunderstood” ALS allows for no cognitive sidestepping around risk factors, and no angry, rueful hindsight that someone elected not to avoid them.
Finding no identifiable object for my anger, I considered the heretically unthinkable. Might God be with whom I was irate? Several of my nonreligious friends will occasionally opine as to why a loving God would allow a devastation like ALS. Invariably any retort involving only scriptural reasoning falls on deaf ears with those debaters. Reflecting on that potential paradox, suddenly, joint spiritual and secular clarity emerged.
God doesn’t allow ALS; the societal “we” do. We command knowledge and resources unimaginable to prior generations. We, via a proxy relationship with our elected officials, direct how those assets are applied. We could find a cure for any illness and make life immeasurably easier for the afflicted in the meantime.
In my pre-ALS days, I was among the silent majority who selfishly allowed suffering to happen, as long as it didn’t interfere in my life. I flagrantly failed to obey the Second Commandment of Jesus: “Love your neighbor as yourself.” I need only look in the mirror to find the rightful target of my anger.
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Comments
K stell
I have ALS too... Jesus is my strength.... one day he will take away my pain
Terri S. Mieyal
I will join you one day in heaven my friend....I have MND too.
Cate Prato
Although I'm only recently diagnosed and don't "look" like I have ALS, when I tell people, I also see horror and acute sadness. I appreciate the sympathy but in some ways, the reaction makes me feel worse. So, I only tell people on a need-to-know basis. For now, I'm trying to live in the now and be thankful for the abilities I still have.
Rick Jobus
Kate, I found myself doing the same early on.
Dave Reckonin
"God doesn’t allow ALS; the societal “we” do. We command knowledge and resources unimaginable to prior generations. We, via a proxy relationship with our elected officials, direct how those assets are applied. We could find a cure for any illness and make life immeasurably easier for the afflicted in the meantime."
It was a good essay (as is expected of Rick) up until this paragraph. It is a huge mistake to involve elected officials as they cannot be relied upon for anything cogent for our preferences and they seek only votes and re-election.
More to the point however is the mind-boggling phrase "God doesn’t allow ALS; the societal “we” do. "
You let yourself down here Rick and you won't fool anyone with this feint and dodge.
Your God created everything in the universe including ALS (Why?)
So, to shift the blame for ALS from God to 'Society' is disingenuous.
You have to move the goal posts back a few miles. The answer is not how much money is thrown at ALS to find a cure, it's why is it there in the first place ? And what Godly purpose is served by the monumental suffering of brutal torture by ALS. We're not talking diabetes here, are we now.
Your suggestion of funding, not deity, as the manifestation of the problem and the solution is like saying we need more funds for additional research for better ways to mend a broken leg than plaster of paris and water.
Should God exist it is self-evident that He Certainly Does Allow ALS, just as he allows earthquakes, volcanoes mud-slides and tsunamis etc to Kill Kill Kill.
On the other hand if we assume for just one moment, painful as it might be for the Believers, that God does not exist and that Nature is all-powerful, then it is easy to accept that ALS is a mutant disorder of genetics, environment and probably other things in nature that we have not yet discovered.
For believers to think that their God is not responsible for ALS but that Society Is, is a tacit acceptance that their deity has opted out, after having created this horror.(Or does not exist.)
You should be careful Rick, you being a Believer 'and all.'
Terri S. Mieyal
There is a DEVIL ya know....everyone is always so anxious to BLAME God. God IS our salvation from the devils curse called als/MND. I lived my perfect life on the outside with fear dominating me on the inside. Fear is the devil. GOD is now my comfort and salvation...being that faith in God the common trait in all reversals. AMEN.
Dave Reckonin
If we tell ourselves that finding a cure is simply a question of adequate research-funding then no prospect of a cure for ALS is likely - ever.
Think of the hundreds of millions of dollars that are donated to Cancer Research every year - especially Breast Cancer which brilliantly and effectively secures enormous contributions.
Yet no cure has been found for cancer. However, there are many effective treatments which keep cancer at bay. Not so ALS.
More money is donated to Cancer Research in one year than has ever been donated to ALS research throughout its known history.
So, if God exists, he appears very content for ALS to go on destroying thousands of lives every year with this most brutal and violent of disorders.
All-loving God ?
Quite a piece of work isn't he?
Terri S. Mieyal
Can you say devil. Do your research. All als reversals have the only common trait of faith in God. Rebuke the devil and possibly change your life for the better by believing in GOD.
AMEN.
Patricia Riascos
I Googled the progress of cancer research on the last 80 years, (Approximately the amount of time since Lou Gehrig's announcement). It was amazing how much data is available. Then I did the same with ALS, there is no comparison.
I think that not until more famous or wealthy people started to get sick, we as a society, then decided to start creating awareness and collecting serious amount of money.
I also think about the futile efforts to mix religion into the tragedy of ALS, one of the hundreds of rare deseases. Each opinion is very subjective and no one will be convinced of the oposite argument. I am a non religious person, but it someone finds solace on their faith, great for them! I celebrate.
Jala Lynn Ward
Thank you Rick for your article, you have given words to many, I myself included, I can't answer for anyone else who left their thoughts but I believe, for various reasons. I feel fortunate but I am aware my day will come and I hope I have someone who will help me through one of life's most difficult times. Thank you for sharing your thoughts.
Dave Reckonin
If someone finds solace in faith, I agree - good for them. People find solace in lots of things, including non-religious altruism for example. When huge and wonderful claims are made for a faith that are simply ridiculous then, until I am banned by ALS Today, I might just keep showing how crazy those claims are.
A big, if not the biggest false claim is that (the) God Loves Us. See if you agree if you visit the pediatric cancer ward...see if you agree if you visit the ALS Clinic. There's the ordinary vicissitudes of life...broken limbs,treatable cancers in adults, diabetes, etc.....and then there's the brutal torture and the horror of ALS.
How people can keep claiming that (the) God Loves Us/You, whilst we witness the violence of ALS every day, beggars belief.
Terri S. Mieyal
Do your devil research....Amen.
Fran
ALS doesn't change much if it just takes creatures who were going to die anyway and accelerates the inevitable. It only wins to the extent that it lessens the quality of the days we enjoy. I've seen many pALS kicking ALS's ass. Just as I've seen physically healthy people who seem to be suffering in darkness.
Rather than weighing in on the spiritual thread in this, I want to recommend Steven Colbert's discussion on suffering with CNN anchor.... Google it!
NeedaCureStefan
Leave God out of it. Jesus does not want you to die from ALS. God does not want you to die from ALS.
That's a fact.
Dave Reckonin
That's a fact is it? Lol.
And just how exactly do you get to that bizarre conclusion ???
If God doesn't ant anyone to die of ALS then why did he create it?
It's always best to apply logic, reason and rationality when in debate with Believers despite their reluctance to employ those three reliable criteria.
Mike
David, I really don't understand your need to continue this debate. Are you really so selfish and narcissitic that you need to profess your beliefs at any cost to others. Especially ALS patients?
Really inappropriate. Satisfy your needs elsewhere.
Jennifer ODell
F$%# ALS and all of you who have no comprehension of what this disease is and does. It just brutally raped my Mom of her dignity, her body functions and eventually her will to thrive. It was traumatic for all of our family. She passed on December 12, 2020 and is no longer physically here. She remained faithful until the very end but that is not even the point!! Faith does not cure ALS, but it can make the afflicted life more bearable.