On Living With Lou Gehrig’s Disease (ALS)

Originally published in The Points Living Neighborhood News in March, 2016.

As I look back now, I led a charmed life for my 46 years on the planet. My parents were pioneers of the pro soccer scene in thenorthwest. This meant that I got to grow up around the sport I loved, and around the teams (Seattle Sounders, Vancouver Whitecaps, Tacoma Stars) my parents worked for–pretty cool for a kid!

Fast forward to adulthood and a rich life working as a teacher of Social Studies at Bellevue High School, traveling, playing music, playing and refereeing soccer, etc. I met my partner, Hallie, in 1998, and we enjoyed a happy, busy existence.

In my 17 years at the high school, I became enmeshed in the community. I worked with juniors and seniors for the most part. I loved teaching American government to the seniors, and my goal became creating active and informed citizens for a healthy democracy (and a class that wasn’t boring). The highlight of the class for many was the “mock Congress” where students crafted their own legislation and then had to try and navigate their bill through Congress amidst an atmosphere of partisanship. My other favorite was Contemporary World Affairs, which was the last social studies class before graduation. It was an open curriculum that allowed us to get into the pressing current events of the time. I would try and bring in guest speakers from whatever part of the world we were studying. We did some good work in those classes, even though the students were in the throes of senioritis–no small feat!

So many interesting young people came through my classroom doors. After about ten years, it becomes sort of a blur. However, now that I have ample time to roam around my brain, I enjoy unearthing long forgotten moments and individuals. There are so many.

IMG_0589In addition to academic excellence, I had a good time doing the other stuff that makes the high school a hub of the community. I became the voice of the Wolverines, announcing at the football games. I worked the clock at basketball games. I was class advisor for several classes. This allowed me to work with parents as well. My favorite event was the five minute Homecoming Parade down Main Street.

Around spring of 2013, I started to notice a funny feeling in my right leg. As a somewhat athletic person, I expected to shake it off like any injury but at the same time, I had a funny feeling about this. As the condition persisted, I embarked on the long road to official diagnosis. Diagnosis of Amyotrophic Lateral Sclerosis (ALS) is a long, protracted process of eliminating everything else. Somewhere along this road, I became aware of the possibility that I might have the dreaded Lou Gehrig’s disease. This was followed by a horrible period of limbo, which ended on December 4, 2013, a date which will live in infamy.

It is hard to describe the moment somebody tells you that you have an incurable terminal disease–that you likely have two to five years to live. There is shock like you’ve never felt before – a real gut punch. In life, you hear about human suffering all around you, but for me, I had an experience largely insulated from tragedy. Now this was happening…really happening to me. I was one of the 6,000 people in the U.S. diagnosed with ALS each year. In an instant my world turned upside down. The whole thing had a very surreal air about it–a dreamlike quality. This surreal feeling is one that has permeated my consciousness nearly every day now, two years later.

What follows diagnosis is a profoundly difficult physical and emotional journey. The progression is fairly gradual, but relentless. The brain keeps sending messages to different parts of the body, but the messengers (motor neuron cells) for whatever reason, refuse to do their job. Thus, I went from cane, to walker, to wheelchair. I knew it was time to change when I kept falling down. We would almost be adjusted to the situation, but the disease would move the goalposts. It was all I could do not to wallow in self-pity all of the time.

I would like to mention here a couple of extraordinary moments which occurred during this gloomy time. The first came about when ex-students, harnessing the power of Facebook, rallied around an online fundraiser. The funds were greatly appreciated of course, but what really moved me were the testimonials the “kids” left on their website. Teaching can be a thankless pursuit, but I knew I had connected with students fairly well in my time. Now here were all these wonderful comments from students spanning my career. They wrote about the positive ways I had influenced them, and about their favorite memories. It gave me an invaluable sense of achievement that what I had done with my working life had great value. At a time when all was seemingly lost came a powerful reminder that no matter what happened, I had made a positive difference in my own small way. This achievement was much needed psychic sustenance.

I had been playing music off and on my whole life. In the last five years, I graduated from rock drumming to writing/singing my own material and playing keyboards. Eventually, this effort coalesced into a band called Dangerfield Newby (historical reference). We had progressed to the point where we were starting to play out and develop some confidence in our sound. We had talked about going into the studio to record in an abstract way, but now we had a real sense of urgency to make it happen. It had become apparent that my ability to sing and play were not long for this world.

IMG_0587For this reason, the recording sessions were poignant and inspired. I enlisted the help of a group of good friends outside the band, and the sessions became a sort of therapy for all. Even legendary BHS social studies teacher, Randy Litzenberger, made a guest appearance on trumpet. It took five guys to help me up and down the long and narrow staircase to the studio. We did not have the luxury of repeated takes to get it right. My limited stamina wouldn’t allow for that. Somehow we got through the seven songs. At this point, much credit goes to producer Don Farwell (Earwig Studios) for making it all sound good.

I am really proud of the final product, Dangerfield Newby’s Music In Our Heads. In addition to the compelling back story, I think the music stands legitimately on its own. I like to think that in our own small way we have contributed something beautiful to the world–more psychic sustenance.

Which brings us to the present. Two years and two months since diagnosis, the disease has done its thing and rendered my limbs useless. The problem with ALS is when it hits the muscles of the diaphragm, it causes respiratory failure, which ultimately does you in. We have countered this by electing to get a tracheostomy, relying on a ventilator to help me breathe. While this grants me an extension, it also incurs considerable expense ($100,000 plus per year), and places a large burden on family/caregivers, etc. Going with the tracheostomy would require around the clock care. For us it was a no-brainer. We were lucky to have a model in the form of friend, Marc West. Marc had been down this road two years before. It was his positive, life-affirming approach, which inspired us to choose life with dignity, as Marc put it. In our research, we had found several other examples of people who were making a go of it, people who were living with ALS.

I like to think we’ve turned a corner. While decimated physically, we’ve been able to adjust emotionally. If you had told me a few years ago that I would be confined to a wheelchair, unable to speak or eat, etc., I would have thought there was no way I could endure such a limited existence. What I didn’t account for is the human capacity to adapt. Now I realize it is possible to have quality of life without the physical dimension. This is a new perspective brought on by this most intense of experiences. One fellow PALS (person with ALS) termed it “shotgun enlightenment.”

My ace card throughout has been my partner of 20 years, the fabulous Hallie. She has risen to the most difficult occasion and provided me with the support I need on several levels. Recently, she has managed the conversion of our apartment into a virtual ICU, and managed the team of caregivers I now require. She’s done all this while continuing to work her regular job. I often feel at a complete loss as I attempt to convey my love and sense of appreciation for this person. The rest of my support network of family and friends has been most impressive as well. I find that many of my relationships have deepened, and I’ve had several friendships rekindled through the experience. This is key to the quality of life piece discussed earlier–hanging out with my people. It is hard to keep up with conversation with my eye gaze computer that I communicate with, but I’m getting used to it and I’m getting faster.

This is my ALS story. Amidst the doom and gloom, there are some shining moments. At the risk of sounding cliché, the idea now is to treat every day as a gift…to maintain a positive attitude. Holocaust survivor and author of “Man’s Search for Meaning,” Victor Frankl, said “Everything can be taken from a man but one thing: The last of the human freedoms–to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

These words resonate with me and i will endeavor to live by them. I also believe that the human condition involves a sometimes painful self awareness, that it’s easy to over inflate what happens to you and lose cosmic perspective. It is oddly comforting to me to contemplate my place in the universe…. And there’s always televised sports.

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