There are moments in life where realizations emerge that define our trajectories. Sometimes these moments are sudden onset, such as writing our first computer program that outputs “Hello world”. The feeling is magical and and immediate for many, prompting an indefinite obsession with the quick-feedback creative process of writing computer software. Other times our epiphanies build up over time, taking months or years to ferment into something that compels us to change our direction. Ultimately, these life-changing events propel us forward, and sometimes off to the side- towards new obstacles and endeavors that we feel justify years of our lives.
Computer programming has always been a fascinating obsession of mine. At the wee age of 6 when my parents brought home an IBM compatible 386 running Windows 3.1 and a BASIC compiler, I experienced the first trajectory-altering moment of my life. I was immediately enthralled with the inner workings of the machine, going so far as to accidentally brick the computer while tinkering with the main startup file (Autoexec.bat) after watching my father tweak it while adding a new piece of hardware. I wish I could say that my enduring obsession with computers and programming grew out of an innocent and unstoppable desire to play with technology, much like the stereotype of the basement dwelling nerd who invents cool shit just because it’s fun. For me, my continued focus on computer science has a much darker history, driven by a mixture of passion, curiosity, and an avoidance of dealing with unimaginable emotional pain.
When I was 7 years old my father, a microbiologist and hyper-athletic man, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a terminal form of muscular dystrophy with no treatment options available. I distinctly remember walking into my little sister’s bedroom one Sunday afternoon and seeing my mom crying while she was picking up toys off the floor. When I asked her what was wrong, she turned to me with tear filled eyes and simply said “your father is dying”.
The next year or two felt mostly inconsequential at the time, but looking back I can see how damaging the process of my father’s death was even in the earlier days of his slow demise. It was the little things that I remember most, like my mother telling me after an evening of rough and tumble play in the neighborhood pool that I needed to stop playing so rough with my father because the demanding physical exertion would make his illness progress all the more quickly (completely true). On another occasion, when my dad and I were fishing at the neighborhood creek, I remember my father trying, frustrated, to tie a fishing knot for over an hour as his fine motor skills failed him. I moved on to fish with my friends, leaving him alone to struggle with the knot. During these earlier years, I discovered the PC games Doom and Warcraft. I also began dabbling with BASIC and learning more about the internal workings of computers. I never realized the immense guilt I would feel years later as I am hit with intense flashbacks that douse me in a mixture of regret, anger, and shame in moments where I fail to avoid thinking about my childhood.
As I got a little older, I become more enamored with computers as my father grew weaker. AOL became a thing in the mid-90s, and for the first time in history people were able to build virtual relationships with one another over the internet. For me, AOL became a mischievous playground. Software security hadn’t yet evolved into a real thing, and you could easily write simple programs in VB that sent other users instant messages with invalid character codes and crash their AOL session. Other interesting tools like chat bots allowed the creation of automated practical jokes. One such example was an insult bot that I wrote that would randomly pick people out in AOL chats and write insulting statements about them in the chat room. If the user reacted, the insults would become progressively more “offensive”. It was the dawn of the online troll, and I was formally a part of it. I spent hours every day in front of my father’s 486 work computer, hacking away at random programs and developing online relationships in lieu of spending time with actual friends in my neighborhood. While this was happening, my dad lost his ability to shower on his own as keeping his balance became more of an issue for him. His ability to talk had degraded to the point that he had to repeat himself 4 or 5 times in many cases before he was accurately understood. This made it incredibly difficult and frustrating for him to communicate when he needed help, something that he was already quite resistant to doing as he tried to cling to some semblance of personal self-reliance. This made for many dangerous and frustrating situations for my family. I remember one afternoon hearing my mom shout for me from the master bathroom of our home. When I walked into the bathroom, my father was lying naked on the floor with a large indentation on the backside of one of his thighs where he had landed after slipping and falling. My mom is tall, but she lacked the upper body strength necessary to pick my father back up so that he could be moved to the bed and checked over for further injuries. At a solid 5'10 in 5th grade, I was the only one in the house able to help. I remember pulling with all of my strength for over 30 minutes until he was finally on the bed. The back of my father’s thigh never healed correctly, and I never stopped having flashbacks to this particular memory with a certain sense of shame, anger, and fear mixed together. I never realized what this meant until I was older.
As I approached my teenage years, I became angrier day by day. I remember being teased by kids at school almost daily about my father’s condition, ranging from jests that I would someday be like him to lude comments about his inability to please my mother in bed. Fighting became a normal thing at school, and I remember facing an onslaught of shaming from school leadership. On one particular occasion, a group of school administrators (principals and guidance counselors) pulled me into a room, dressed me down, and expressed their hope that their children didn’t end up like me when they got older. At home, I remember feeling angry and taking that anger out on my mother. I became more enamored with my digital life, which become even more of a way to escape. I started getting into online gaming with Age of Empires, and began building mods with other players to add additional functionality and fun to our favorite avenues of digital escape. I remember feeling as though I preferred my digital life to my real one.
I was 14 years old when my dad finally lost his battle to Lou Gehrig’s Disease. On the night he passed away, I was having dinner with family friends while my mother spent time in the hospital with my father who had been hospitalized with pneumonia, a common end-stage death sentence for people with ALS. I remember the phone ringing during dinner and my blood immediately running cold even before the call was picked up by an adult in the house. As soon as the call was over, I was driven through downtown Austin at break neck speed toward the hospital where my dad was. I remember walking into the waiting room, seeing my mom with teary eyes telling me that he passed away and that they kept his body warm in case I wanted to see him and hug him one last time before the funeral. I said “no”, and my world went black. I don’t remember much from the next two weeks, including his funeral.
During the remaining years of my adolescent life, my relationship with computers and the internet served as a means of escape. Getting lost in video games, code, and information kept me from processing what had happened to my earlier childhood in a profoundly powerful way. As unhealthy as this was, I do not believe that any young child truly has the means to process the pain of a terminally ill parent and will almost certainly find some way to avoid dealing with it. It is an unnatural and grievous circumstance that no child should have to live through. I have been told that kids who grow up in families cursed by ALS frequently struggle with PTSD and depression for a majority of their adult lives, with many turning to substance abuse as a means to cope. For me, the PTSD-drenched impact of my childhood ultimately expressed itself in shameful flashbacks, work-a-holism, binary thinking, insomnia, panic attacks, and an obsession with empty career achievement and financial gains as a means to feel whole.
Over the last two years, I’ve made significant progress in dealing with what happened to my father and my lost childhood. This leap was made from the culmination of days and weeks of psychotherapy, the loving encouragement of my wife, and the relentless desire to feel real emotion and experience the beauty of being human rather than remaining predominately cold as my PTSD trigger state would have me be. This process has also unearthed a trajectory altering realization: I need to do something about it, and that need is irresistibly driven from the very base of my soul.
Let me be clear: I got lucky. What I went through just so happened to break me in a self-healing manner. My anxiety and relentless focus caused me to address the very issue that caused said anxiety and relentless focus. Not everyone is so lucky. Diseases like ALS break people; not only the person who is sick, but also their children and other immediate family members. Once you are diagnosed with ALS there is no hope. The only person who has ever survived ALS is Stephen Hawking, and doctor’s can’t explain why he is still alive. I will never be “past” this, and my perceived ability to cope by applying the protestant work ethic isn’t “strength”. If four people fall out of a building’s window and one of them doesn’t break their back, that doesn’t make the non-crippled person stronger than the rest; it makes them lucky that they landed in a less fucked-up manner, something that wasn’t even in their control. I feel like, as a society, we all too often congratulate people who overcome this kind of adversity as being “strong”. Strong compared to what? The people who ended up as drug addicts? That’s bullshit.
So here is my trajectory change: I am going to find a way to channel my technical skill toward the health space, and eventually toward degenerative neuromuscular diseases like ALS in a research-oriented capacity, no matter what it takes. No child should ever have to live through this kind of experience, and the world needs more people with a deeply personal interest to contribute to better treatments. I’ve found success in my career as a software engineer, both through developing business applications and through open source software. I want to take my knack for solving complex software problems, combine it with the desire I have to put a bullet in the head of the muscular dystrophy monster, and try to help find traction in the treatment of these “untreatable” diseases.
I know this won’t be an overnight endeavor. I love working in my current role at Collective Health. I fully intend to see it through until we reach terminal velocity with our mission of fixing health insurance, a bizarre and fucked up experience for most Americans today and something my family had to struggle with when my father was ill. I also have no delusions about the subtlety of the impact I will have in the best of cases. People, far smarter than I will ever be, have been working this problem for decades. However, from where I am sitting, adding more driven people to these projects couldn’t do anything but help.
If anyone reading this happens to know someone in the field of medical research who is focused on ALS or similar diseases, I’d love an introduction. My current role at Collective Health will hopefully expose me to many influential people in the public health space, but I know that the most powerful connections often form through random and informal channels, such as people stumbling across a blog post.
Edit: I don’t want to give the impression that the few experiences that I described even come close to the most painful aspects of living through the ALS death process of a parent or a family member. There are countless darker aspects to surviving a family member with this condition, and particular experiences that elicit a cold sweat when I think about them. Out of respect for my father and my immediate family members I’ve decided to stray away from these experiences and focus on parts that are more dignified and less emotionally brutal. I know my father would have wanted it that way; not for him, but for my family.