by ben byer
here at als film fund we try to stay out of politics. truth is, als sufferers have enough problems without getting involved in that mess. but more importantly, als knows no party affiliation. it strikes all and any with reckless abandon, democrats, republicans, independents, libertarians, green party members, socialists, communists, fascists, nazis…. it doesn’t matter what you believe in, als will bring you to your knees willing to set aside those beliefs for a way out. i have seen staunch pro lifers running to get fetal cell injections and wto protesters snuggling up to pharmaceutical fat cats when confronted with the rapid, unrelenting paralysis of als. it’s simply human nature to try and survive. morals go out the window in a jiffy when death is knocking at your door.
i don’t pretend to know anything about politics, but i know a few things about neurodegenerative disease. i have been afflicted with als for at least six years and have survived longer than ninety percent of my fellow patients. i have interviewed many of the leading experts in the field and a dozen als sufferers for an award winning, critically acclaimed documentary film on the subject which i wrote, directed and produced. i am now mostly paralyzed, unable to speak clearly, have severe respiratory problems and am typing this with a computer that follows my eye. i have embraced my nightmare in order to survive it and can’t escape the dark reality that my malfunctioning body and this malfunctioning country have a lot in common.
no one knows how, why or when sporadic als starts in a person. theories abound, from genetic mutations to environmental toxins to stress to a myriad of combinations of those and other causes. the bottom line is it’s a mystery. and until someone can prove otherwise, it will remain a mystery. the same is true of our national ills. democracy built on violence, wealth built on slavery, industrialization built on immigration, are these the roots of our problems or the reasons for our being? when i was a child, my greatest fear was that one day i would be paralyzed. this could have been premonition or a contributing factor to the onset of disease. more importantly, what i have learned is that the causes don’t matter. knowing them or not doesn’t change my condition. and the most promising therapies don’t rely on this information. it’s irrelevant.
in my late twenties, ironically in the late nineties, i enjoyed my last years of youthful bliss. things were going well for me, and in the year 2000 and summer 2001 i hit a high water mark in my career, financially and personally. but underneath it all i knew something wasn’t right. as far back as 1997, i remember signs that my body was struggling. uncontrolled laughter, a finger didn’t move right, fatigue early in the day. our country saw those signs too. inflated stock prices, unanswered genocide, witch hunt persecution and stolen elections. we knew we were headed for disaster, but the status quo was working too darn good. nobody wants to rock the boat when the iceberg is out of sight. that’s why i never went to the doctor. ignorance is truly bliss. then we saw the iceberg, and it was bigger and badder than any of us ever imagined… except Richard Clarke.
on Sunday, September 16, 2001, i was having brunch with my wife and my father at an undisclosed location on the north side of Chicago. after i mopped up the last hollandaise of my crab cakes benedict, my father began giving me a few too many details of his recent heart attack. never one for medico talk, i promptly passed out and went into convulsions. just five days after the world trade center came down, it felt as if the overwhelming nature of that horrible day had impacted my system. many people believe that als patients have an instigating moment that sets the disease in motion. something catastrophic that kicks off a cascade of physiological events that result in the rapid, unstoppable death of nerve cells. i believe September 11, or those crab cakes, was mine. while i did have signs of the disease years prior, after that day my life would never be the same. sound familiar?
the next year was a valiant fight against the inevitable. deep down, and at times on the surface, i knew what was coming, a day of reckoning. my body was slipping down a slippery slope. cramped hands, slurred speech, loss of coordination, i was headed into the darkness. it’s fair to say our nation had sufficient warnings as well. a terrified populace, an unchallenging media, a congress all too eager to acquiesce to an arrogant, reckless and poorly managed white house and a president who has failed at everything he has done except stealing the election that put him there. that wasn’t a good year for me or the country. and two days before the first anniversary of September 11, i was diagnosed with als, while the invasion of Iraq was being planned, guantanamo was opening up, the patriot act was in effect and our nation’s economy was being set for disaster.
the day of my diagnosis, 363 days after September 11, was strangely parallel too. as i looked out the window of the twentieth floor at northwestern memorial hospital, the crisp blue waters of lake Michigan met a perfect, cloudless autumn sky. it was a beautiful day for my world to come crashing down. delivering the bad news was dr. teepu siddique, a highly respected neurologist who is credited with identifying the sod-1 gene, the only marker for familial als and generally considered to be one of the few real breakthroughs in the field. as dr. siddique quietly told me what i had, a fatal, rapidly progressing neurodegenerative disease with no effective treatment, i could see he was troubled by my and his predicament. fate had thrust us in a room together and we were locked in hells dance. wanting to know my perceived oppressor, i asked dr. siddique where he was from. Pakistan he told me. it had to have been a touchy subject considering the climate at the time. i imagined this man who had devoted his life to caring for Americans afflicted with one of the most horrific diseases in the world of medicine being strip searched at the airport because his name is teepu. or being beaten to death in a parking lot because his skin is brown. it was an eerie reminder that all was not right in the world. months later, i commented to dr. siddique about his roots in the middle east. south Asia, he corrected me. but, he added, we all look alike.
the next few years saw trial and error on two fronts. just as our president instructed us to go shopping and hit the town in the shell shocked aftermath of 9/11, my wife and i hit Shaw’s crab house for oysters and champagne after my diagnosis. i kept working, told my friends and family i was devastated but ready for the fight, and went deeper and deeper into a state of denial. sometimes denial is good, and in my case it helped me get through some extremely dark days. but im not the president of the united states. around the time the president proclaimed mission accomplished, i started shooting a documentary film that would later become indestructible. fortunately, one of those endeavors was a success, and im not talking about Iraq. and yes i do support our troops, many of whom are paralyzed like me, and my brother who is a Lt. colonel in the marine corps. the importance of both of these efforts, whether or not successful, is the deep rooted desire to take action when under attack. im not saying our government should have made a movie after 9/11, but attacking Iraq is like if i had made a film about ball bearings and told everybody those tiny pieces of metal caused als to raise the funds. it just doesn’t make sense. and there’s no evidence to support the claim.
al qaeda and als may seem like unlikely bed fellows, but upon close examination one can see several similarities beyond their sharing of the same first two letters. both strike with deadly force, anyone, anywhere, anytime, seemingly without regard for humanity. they also appear to be everywhere and nowhere at the same time. unlike cancers, als has no discernible markers. the only sign of the disease is the absence of strength, making it incredibly difficult to monitor. operating in the shadows provides al qaeda with a similar advantage over conventional armies. both are insidious, building momentum and strength to gradually overcome their victims until it is too late to fight back. combating these two foes presents similar challenges as well. both are deeply embedded in the host they are set to destroy. killing this enemy conventionally means killing the victim as well. this faulty approach is seen most obviously in Iraq and the daily carnage there. but also here in the us where our rights, privacy, values, economy, government, religions, infrastructure and well being have been usurped in the war on terror. it’s like using chemotherapy to treat als, it doesn’t work and you’ll kill the patient. meanwhile the hospital bills said patients insurance astronomical fees, which they refuse to pay and then drop him because hes sick, he dies and his wife gets stuck with the interest bearing bill which she can’t pay in addition to the inflated mortgage after losing her job to a justifiably angry nine year old in Bangladesh who joins al qaeda, illegally emigrates to the us and blows up the crumbling homeless shelter where the family of the now deceased ended up during the second great depression.
between 2003 and 2008, my physical decline was mirrored by our societal decline. as i lost the use of my hands, the nsa was spying on Americans. when i could no longer feed myself, prisoners at guantanamo were being force fed. falling down a flight of stairs was overshadowed by new Orleans under water. as millions saw the price of gasoline rise i couldn’t drive anymore. when fallujah fell i bought a wheelchair. i lost seventy pounds while halliburton made seventy billion dollars. i lost another four while Exxon mobil made 40 billion. i couldn’t walk anymore while the supreme court overturned brown v. board of education and students gunned down students in our schools. my voice was unintelligible when the surge started. as Iraq and our economy went down the tubes, so did millions of my nerve cells. but it wasn’t all bad. my son thrived and millions of iraqis found freedom. our film changed people’s lives while Americans became more engaged in their future. as hybrid vehicles entered the marketplace i learned to live with disability. when global warming took center stage my friends and family galvanized around me. as we saw new promising leaders emerge i found deep reserves of inner strength.
what i have learned through all this is that it takes a lot more than a good doctor, substitute politician here, to survive, and even thrive under these circumstances. many extremely talented, hard working people have devoted their lives to finding an effective treatment for als. they’re still looking. it will probably be many years, long after my, and even your lifetime, until the cure is found, if ever. that leaves me and every other als patient looking deep, long and hard for reasons to keep living, keep reaching, keep growing. there is something about a disease that gets worse and worse and worse that defies our human instincts. it just isn’t right. it is that unsettled feeling at the core of the soul that motivates me to face each day. the feeling that this isn’t right and there is more to be done. that i can make the world a better place. simply the pursuit of the lofty goal, no matter how unlikely, is in the end the only goal worth pursuing. but underneath that goal is the very real possibility that someone, somewhere, somehow could unlock the mystery in my lifetime. that a cure would be found. that i would be able to stand on my own, walk again, speak clearly, breathe deeply and revisit the life i have nearly forgotten. that flicker of light, deep in my gut, is called hope. far from a word, it is a life sustaining drug. that is my reality. the degeneration of America is frustrating to watch. it is probably not unlike watching someone you love succumb to als. but that’s life… people die, civilizations fail, heres hoping someone finds a cure.
ben byer is a film maker, father and als survivor. 50 to 1
