I don’t know if you would remember me I am a friend of Drew & Rebeccah’s, I met you once while in Chicago visiting. As a profession I am a social worker for a Hospice here in Winston-Salem, I deal with some really shitty situations every single day. Well today I got a rare treat, a good day at work . I guess I should explain. I currently have an ALS patient on my case load, he has a very good support network but he had expressed that he feels very alone in this disease process. I used you as an example of someone living with ALS and someone who is attempting to bring about awareness. Of course he wanted to see the film, so (with permission from you sister) I brought a copy to his room in the facility that he lives in and let him see your work. At the end through tears in his eyes he said thank you, for making a movie that let him know that he was not the only person fighting.And on a personal note thank you for helping me help others.
On July 18 Indestructible opens at the Gene Siskel Film Center in Chicago. After showing our film all over the world I’m excited to premiere at the most prestigious art house in my hometown. In 1971 I was born just south of the Siskel Center at Michael Reese Hospital. At the time my parents were living in a twelve room apartment on the corner of State and Schiller in the Gold Coast. They paid $900 per month in rent. It was a stones throw from the Playboy Mansion where my father was working for Hef.
One of my earliest memories is riding on the back of my mother’s bike when she fell into the pond in Lincoln Park, and getting covered in mud. She says now I was laughing the whole time. When I was three we moved to a big house on the lake in Evanston, but trips to the city were frequent. To my grandparents’ apartment on South Lake Shore Drive, to dinner at The International Club at The Drake Hotel, and to Hebrew school three days per week at Central Synagogue on Cedar Street. After class my brothers and I would hit Ashkenaz Deli for beef sticks and dill pickles, then to Solomon Cooper drugstore for candy. On the high holidays services were moved to the Ambassador West Hotel, where my brothers and I would escape the tedium by exploring the underground tunnel of shops that stretched across State Street to the fabled east wing of the hotel, where Bogart, Sinatra and Bacall dined in The Pump Room during their layovers in Chicago, on the way to Hollywood.
When I was ten, my brother Josh and I would take the El to Maxwell Street on Sunday mornings and explore the labyrinth of tables and stands in search of contraband. Baseball cards, throwing stars, nunchuks, switch blades, watches, sunglasses, wallets and comic books were all to be found and had, topped off with a polish sausage and sauerkraut. On Saturdays, we would ride our bikes past the cemetery on Sheridan and Howard to Rogers Park and to Dennis’ Place for Games. Here, for two dollars we played unlimited Donkey Kong, Asteroids, and Pole Position, and whatever else we wanted, for four whole hours. My grandfather taught me how to play golf, a game I never understood, at Waveland Golf Course on Lake Michigan at Belmont Harbor.
In high school we made occasional trips to Rush Street with our lousy fake ID cards made by some guy in a basement. But more often we could be found at the PM Club on Howard Street just twenty feet out of the jurisdiction of the Evanston Police who were still enforcing prohibition laws as one of the last dry towns in the country. The PM Club didn’t card and we didn’t care. Liquor flowed freely in that dark cave moonlighting as a bar, and after getting plastered we could get behind the wheel and go cruising for dime bags in East Rogers Park, an area we affectionately called “the jungle”. At the train station we’d pass the pawn shop my brother introduced me to, and my family’s favorite Mexican restaurant, La Choza, where my mom could bring her own beer and our family of seven could eat dinner for twenty dollars.
I went to college in Bloomington, Indiana which feels like a Chicago suburb with Hoosiers injected into the matrix. It wasn’t until I lived in Paris for a year that I broke some of the chains tying my mind down to my home. It was too comfortable, too familiar. I needed that departure to find out who I was devoid of the insular entanglements crowding my consciousness. After Paris I moved to Los Angeles and continued my search for intellectual and emotional freedom. I found so much I didn’t know who or what I was anymore.
In 1994 I came back and started working in the Off Loop theater circuit, soaking in the total independence of start up companies. People I had no previous connection to, but shared a common goal, became my colleagues and friends, artists who came to Chicago from all over the world because it was a great theater town. We put up shows in old factories, paint shops, bars and basements. I learned that all one needed was a room, some chairs, a few lights and a lot of hard work. It was a new world to me, and I dove into the neighborhood playhouses that populate this city.
Tired of boring day jobs, I took up work as a licensed horse drawn carriage driver on Michigan Avenue. Standing on the corner with a horse showed me a city I never dreamed of. Every walk of life imaginable passes through downtown day in and day out. For three years I had a front row seat. I also discovered the carriage industry, the closest thing to a modern circus I have seen. I often took passengers on rides down State Street, past the Playboy Mansion, our old apartment, the Ambassador Hotel, and the pond in Lincoln Park.
I returned to Los Angeles for three more hard years in search of that elusive career jump so many actors are looking for. But most of my time was spent on the freeways driving a meat truck. Coincidentally, my grandfather drove a meat truck on the south side of Chicago in the thirties and forties. My other grandfather ran a pharmacy on the west side. His father collected and sold scrap metal in the early twentieth century in the city. And when I’d had enough of selling beef and chasing a mirage in the desert, I came home to find Chicago gave me what I was after in L.A. Being away forced me to grow. I was less a kid from Evanston, and now a professional who had paid some dues. I began working in theaters I admired. I wrote a play based on my time in L.A.. And for the first time felt like an adult in the city I grew up in.
A block from where I used to stand with a horse, I was diagnosed with ALS. We darkly celebrated my diagnosis at Shaw’s Crabhouse, where my parents used to take me for my birthday. For months after, I drove around Chicago with my son in the back of the car talking about my memories into a tape recorder. Streets I had long forgotten were resurrected by my visitation. Sitting on the boulders around Lake Michigan to recollect my life, I remembered the time my brother and I were swept out hundreds of yards into the choppy waters in a dinghy filled with beer, only to be rescued by the coast guard when I thought death was certain.
When I decided to make Indestructible, I instinctively knew it couldn’t take place in Chicago. I needed to remove all ties, and to experience the world fresh as someone living with ALS. The memories of my life are too strong here, too powerful. ALS was a departure from everything I knew, and that had to be reflected in the film. I traveled the world living with ALS. It was a remarkable experience. But I also traveled it before I knew what ALS was. The world didn’t change a whole lot. Neither did Chicago. It’s one of the few comforts I have. No matter what happens to my body, I know there are islands in Greece, a wall in China, a river in Paris, smog in LA, and a lousy bar with cheap beer in Chicago.
Now I spend most of my time in Albany Park, a neighborhood on the north side of the city where my son plays with kids from The Congo, Mexico, The Philippines, The Ukraine and India. Several times per week we walk to Gompers Park, a large expanse of land with baseball diamonds, bike trails, trees, wildflowers, and about a mile of the north branch of the Chicago River. it’s not Yellowstone or Arches National Monument, not even close, but for a guy who can’t leave home very often it ain’t bad.
Through my front windows I can see a Chicago I never knew before: strippers walking from the bus to The Admiral Club, women in burkas with their daughters, gangbangers running from the cops, the woman who circles the block twenty times a day, schoolchildren kicking a tin can on their way home and my son riding his bike. I spend a lot of time just watching. The world isn’t really passing me by as much as it is swirling around me. I don’t imagine I’ll ever move from this place, barring a miracle. Summers are too hot and too short. The winters are too long and too cold. Traffic sucks and people honk. But I like it here. It’s good to be home.
On May 2nd, Indestructible will receive its World Theatrical Premiere in Madison, Wisconsin. On May 16 and May 30 it will open in theaters in Los Angeles and San Francisco respectively. Coincidentally it happens to be ALS Awareness Month in May. This was not a planned occurrence of symbiosis, but rather, like many other fortuitous events surrounding this film, it was just meant to be.
Twenty years ago, Indestructible could not have been made. Even ten years ago it would have been nearly impossible. The democratization of the film industry, making this art form available to nearly everyone, has played a crucial role. It’s pretty hard to imagine a studio, or private investors, taking a chance on a first time director with a projected life expectancy shorter than the amount of time it usually takes to complete a feature film.
But because we live in a time when anyone, anywhere can speak their mind and be heard by those who care to listen, for the first time in the history of cinema, a film about ALS, made by an ALS patient will be released in theaters on our national stage. That may not be a big deal to some, but for people painfully familiar with ALS it means a lot. It means that their story is being told. Not by someone watching from the outside, but from within. It means that ALS patients can and often do make valuable contributions to our world. It means they are an integral part of the solution to this disease, not just a helpless, pathetic crowd looking for a patron saint.
I never wanted to be a member of this club. No one does. But I am proud to fight tooth and nail alongside some of the most courageous, dedicated and compassionate people I have ever met. The patients, their families, health-care professionals and organizations who are committed to ending this disease have redefined the word strength for me. We now we have an opportunity to do with a film what many ALS patients are unable to do for themselves. To be heard. To say to the world, this is ALS. This is ALS. This is ALS. I don’t pretend to think that Indestructible speaks for every ALS patient. But it speaks for some. And that’s a start.
When I meet people for the first time and they ask what I do, there seems to be a glimmer of excitement in their eye when I say I am producing a film. They must think that being a film producer is glamorous and that I will be famous someday. There are definitely times where it is incredibly fun and exciting, but more often than not, it is a mixture of difficult, tedious and exhausting. Many times it is also sad and painful. That glimmer of excitement in people’s eye generally tends to fade when they hear about the subject matter of the film I am producing. Either it scares them, or it reminds them of the person they knew who died, the loved one they watched suffer, or the friend they cannot help.
Most film producers have assistants, interns and staff in a variety of areas. I have two kids under the age of two. So in between phone calls, emails, follow ups, music licensing, legal issues, taxes, donations, bookkeeping, research, websites, fundraising, coordinating, travel arrangements, begging - I am also changing diapers, going to playgroup, feeding bottles, nursing fevers, watching sesame street, playing with blocks and wiping spit-up. I can frequently be seen answering my cell phone to take a donation while pushing a stroller uphill. I have found a way to balance it all, and I do have a lot of help: as co-producer, Ben is completely involved in all decisions regarding the film, my mom and sister are always willing to take on whatever menial task I ask them to, many others have stepped up and offered their support, my dad has no issues with helping to fundraise, my husband is the technological genius and helps me with many things, and so on. But in the end, I wear about ten different hats and while none of them match very well, they all seem to fit together.
This might explain why I managed to screw up pretty good recently. If you knew my husband Drew, you would understand why. He has an obsessive need to back up all of his records, music and dvds. Perhaps he is worried that our kids will one day get into his collection and bury them in the backyard? I am not exactly sure. But apparently after he had backed up one particular movie, some files got switched around on my computer. Instead of burning Indestructible, I burned “Superbad”. Mind you, “Superbad” is actually a pretty funny movie in parts, but this is not something I like to readily admit I have done. Luckily, the three people that got the wrong film were very understanding about it and found it rather funny. This is probably my biggest screw up in five years, which I guess is pretty lucky in the big picture, but really, did it have to be “Superbad”? There might be some irony in there somewhere.
The reason for this story is not to air my dirty laundry for all to see. It is to remind us all that we are all human. Even though you have been hearing about our travels to festivals, our upcoming theatrical releases, and our exciting awards, the reality is still there. Ben has ALS. He has not found a cure. I am losing a brother. I am not any different than the countless people who email me everyday to tell me about their own loved ones. Ben is no different than the 30,000 or more people in the United States that are living with ALS, not to mention the innumerable people worldwide. Even though you may not know someone with ALS, you probably will one day. While we work so hard to get this film out to the world, please remember that we are just like anyone else. We are people who have been faced with something tragic and decided to turn that tragedy into something else. Something profound and powerful, something almost magical. I see that when I look into the eyes of people who have watched the film. They are grateful to Ben for telling their story too.
The purpose of this newsletter is not to ask you for money. You already know we need it and I promise to make a very loud announcement when that need has ended. The purpose is to give you some insight into why you have been a part of this. You have sent us your hard-earned dollars to help make a film that you were not quite sure would ever get finished. But the time has come. Indestructible is finished and we are ready to get it out there to you. Many of you ask if we are looking for “distribution”. This is not a simple answer. The short answer is that it has taken me five years to learn the market for this film. Most distribution companies are not willing to learn about it because they do not see the dollar signs flashing in their eyes. We do not let that deter us. In fact it helps motivate me to work harder. I will be glad when the market for this film has disappeared, because that will mean that we have made a difference. Everyone affected by ALS and other diseases like ALS, anyone faced with any sort of challenge or anyone who realizes that they could be. When all of them have seen this film, we will have reached our target audience. That adds up to quite a few people.
there are three things i try to avoid at all costs. extreme cold, large crowds of people, and loud noise. so going to a sold out show at metro, on a freezing march night, to see the bob mould band play was a verifiable triple threat. an added bonus is the inaccessibility of metro. being carried up and down three flights of winding stairs three times in a wheelchair isn’t as fun as it looks. although i give metro and their staff credit for making it work. but i was determined to be there on the invitation of an old friend. a friend who has been there for me many times before. and after all, i was there to see the bob.
bob mould conveniently divides music listeners into three distinct categories. those who appreciate his gifts, those who have never heard his music, and those who have no taste. that may sound extreme, but even my late grandmother Florence who grew up in the cornfields of valporaiso, Indiana before the great depression would be hard pressed not to find something she liked on the addictive and hypnotic album, workbook. that’s some serious range from a man who can find a tune in a jack-hammer.
i was first introduced to the music of bob mould by my roommate in the early ninetees. he used to play workbook in its entirety over and over again. here he is playing wishing well.
for those of you who love bob, yes, that skinny, pasty kid is bob mould band bass player Jason narducy. i shot that video in our massive apartment on Chicago’s north side. Jason was devoted to bob like many of those folks were devoted to Jim Jones. i remember when Jason told me he had met bob at metro. a story bob recounts on his new dvd. i couldn’t understand how he had the balls to walk up to his hero and establish a relationship without coming off like an idiot. but Jason knew his place in the world from a very young age. it wasn’t confidence as much as it was just being himself.
Jason and i met many years earlier on a street-corner in southeast Evanston where we both grew up. i was playing catch with my friend adam caldarelli when Jason rode by on his banana seat bike. Adam said, hey that’s Jason narducy, then for reasons i never understood threw the ball into his spokes and knocked him to the ground. Jason swears he doesn’t remember this. maybe he blocked it out. a few months later i saw him play at the Unitarian church with his pre teen punk quartet verboten. that means forbidden in German.it was the early eighties, the height of the cold war. he was punk, i was preppie.
the next time we met was in the back of Mr. eddys junior year history class. we quickly forged a bond of shared interest in Napoleon, the who, and cases of Milwaukees best sold at walgreens for 4.79. you can do the math.
our friendship grew through college and into our fledgling careers. although mine was much more fledgling than his. i wasn’t doing vaudeville at ten, the theatrical equivalent to his verboten days, if there is one. we were chasing after the same dream, to be professional artists on our own terms. and because i can’t sing, and Jason can’t act, write, direct, make films, impersonate Elvis like me, or do a bunch of other random things ive hobbled together to make something of a career for myself, we never had the underlying jealousy that can infect friendships among artists. his successes were mine. mine were his. so when he met bob, it was like i met him too. it was probably the same for all our friends. our boy was gonna be a rock star.
ten years later i was diagnosed with als. a shitty disease that tastes like shit. Jason and i were business partners at the time, running a house painting company. he was the first person outside of my immediate family that i told. those days and the months that followed are foggy, slow motion movies playing in my head. i can’t remember much about that time that has any clarity. but i remember Jason was there for me. and i remember him and i going out for ice cream.
in the spring Jason called me one day to end our business partnership. i had been asleep at the wheel for too long. he couldn’t do it alone, he said. i wasn’t pulling my weight. in just a few months i had lost my health, my marriage and my business. now i see clearly the dilemma he faced, how difficult that was for him, and why he did what he did. at the time i was blinded by anger and self preservation. we didn’t talk for close to a year. as i said, it’s a shitty disease that tastes like shit.
just after Jason broke off our partnership, i had an epiphany that would change my entire existence. at home, with no job, only my son to worry about, and lots and lots of time on my hands, i decided to make a film about my new shitty life. that decision led me down a remarkable journey of self discovery and artistic exploration. it also added years to my life. anyone who doubts the healing power of art is an idiot, or gravely misinformed. Jason dumping me was one of the best favors ive ever received.
we reconnected the next spring at my sons birthday party . i couldn’t be angry anymore. life is too short. it was an important step for both of us to find our friendship in the midst of the storm, like boats drifting in the fog.
in September Jason came with me to the world film festival in Montreal. he dressed me, bathed me, fed me, typed for me, spoke for me, pushed me all over town and up many hills, changed a tire on my wheelchair, got me a photo with Angelina jolies dad and wiped my ass daily.
als automatically separates the men from the boys, and the women from the girls. it is the ultimate qualifier. it is death, destruction and fate all rolled into one hellacious disease. it is not fun, for me, my family or my friends. it is easy to walk away and many people have disappeared from my life like a rat in a hole. some people want to be my friend because they think it is the right thing to do. as if i am a charity case looking for someone to patronize me with their presence. both groups, those who leave, and those who come because of a disease do the greatest injustice to themselves and to me. we are all one step away from losing everything. just one gene, one car ride, one bad day. staying in the fight, staying present. and engaging on a deep level that sheds the weight of disability, disease or physicality is crucial to our growth as truly compassionate people. it is what connects us, and makes us human. but don’t misinterpret this as a plea for more friends. i already have several. and one is a fucking rock star.
side note. i am not a bob fanatic. i am a fan. but i am forever indebted to bob mould for setting an example for independent artists staying true to their vision. artists like bob, and they are few and far between, show us mere mortals that you can make music, films, books, paintings or whatever with purpose and clarity guided by your own voice. thanks bob.
“During the time that I cared for my childhood friend Rachel as she battled ALS (in 1999) I felt so helpless, due to the illness yes, but more because all of Rachel’s thoughts, fears, hopes, emotions were locked inside of her – they poured out her eyes – which were strikingly like your brother’s (I can’t imagine a more potent image for Indestructible’s cover). And as I read Ben’s words and yours and so many others on the film’s website, I feel so strongly that Rachel’s voice is finally able to be heard. Thank you.”
Hello, Our documentaries both just screened at the Lake County Film Festival this past weekend, and I was thrilled to see that you had won the jury award for Best Documentary. Once I saw your film on Sunday, I was hoping you would win. Our documentary, A Soldier’s Peace, was also autobiographical in a way and I really related to what Ben said about wishing he had the talent to make a film, without being the subject of it. I have had very similar thoughts, but felt that Indestructable was a masterpiece, regardless of the fact that Ben was the subject. He did an excellent job directing and deserves praise for that. I heard he was there on Saturday, and I really regret not being able to meet him. Maybe that will happen at another festival down the road. If the opportunity arises, I would love to have a screening of your film in Utah. I cried through the entire thing because my 2 1/2 year-old daughter was back home and I couldn’t help thinking of her throughout the movie. Thanks for reminding me of what a beatiful journey life is and how wonderful every day can be. Thanks for the honesty of the film and for sharing your journey with movie-nerds like me. Sincerely, Kristen Thompson A Soldier’s Peace
I saw your film at the Waisman Center screening and also participated in the panel discussion afterward. I have to thank everyone involved in the making of this film for the dedication you have for telling your story and to inform more people about ALS. I have really always tried to avoid thinking about my mortality or how it is easy to take things such as the ability to communicacate for granted. It is difficult to accept that a disease such as ALS could affect you at any time. Your film helped me to come closer to understanding and accepting that so thanks again. Your humor and ability to accept and adapt to the changes is very inspirational.
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
