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.
In 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.
For 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.
Team Newby 
Inspirationally Awesome!!!!!
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My first ALS symptom occurred in 2016, but was diagnosed in 2018. I had severe symptoms ranging from shortness of breath, balance problems, couldn’t walk without a walker or a power chair, i had difficulty swallowing and fatigue. I was given medications which helped but only for a short burst of time, then I decided to try alternative measures and began on ALS Formula treatment from Aknni herbs centre, It has made a tremendous difference for me (Visit ww w. aknniherbscentre.c om). I had improved walking balance, increased appetite, muscle strength, improved eyesight and others.
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My first ALS symptom occurred in 2016, but was diagnosed in 2018. I had severe symptoms ranging from shortness of breath, balance problems, couldn’t walk without a walker or a power chair, i had difficulty swallowing and fatigue. I was given medications which helped but only for a short burst of time, then I decided to try alternative measures and began on ALS Formula treatment from Aknni herbs centre, It has made a tremendous difference for me (Visit ww w. aknniherbscentre.c om). I had improved walking balance, increased appetite, muscle strength, improved eyesight and others.
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My first ALS symptom occurred in 2016, but was diagnosed in 2018. I had severe symptoms ranging from shortness of breath, balance problems, couldn’t walk without a walker or a power chair, i had difficulty swallowing and fatigue. I was given medications which helped but only for a short burst of time, then I decided to try alternative measures and began on ALS Formula treatment from Aknni herbs centre, It has made a tremendous difference for me (Visit ww w. aknniherbscentre.c om). I had improved walking balance, increased appetite, muscle strength, improved eyesight and others.
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My dad was diagnosed with ALS about 6 A months and a half ago, after 1.5 years of undiagnosed symptoms. We are just beginning this journey, and it’s very frightening. We started www .madibaherbalcenter. com immediately because they have the right medicine to cure this ALS disease permanently, to say the least. The absolute certainty of it all is the hardest to grasp. I wouldn’t want to see my father go down this road without the help of the natural organic formulas that were applied immediately. Some days are hard, and others are easy. All I’m saying is that there’s a cure at www .madibaherbalcenter. com God bless.They have given great relief to patients suffering from all types of diseases including :
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ALS is a cruel disease. My mother who had been diagnosed with Lou Gehrig’s disease for 3 years at the age of 82 had all her symptoms reversed with Ayurveda medicine from natural herbs centre after undergoing their ALS/MND Ayurvedic protocol, she’s now able to comprehend what is seen and she no longer needs the feeding tube to feed,. God Bless all ALS disease Caregivers. Stay Strong, take small moments throughout the day to thank yourself, to love your self, and pray to whatever faith, star, spiritual force you believe in and ask for strength, their website is naturalherbscentre. com She’s getting active again since starting this treatment program…
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My husband had ALS/MND programme about 4 months ago. he no longer requires a feeding tube, sleeps soundly, works out frequently, and is now very active. It doesn’t make the ALS go away but it did give him better quality of life. we got the treatment from vinehealthcentre. com
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Hello Mr. Best,
I just came upon this page. I had no idea about your ALS journey. You have always been an incredible human being! You were without a doubt the most influential teacher in my life! You taught history at Tumwater High School back in the late 90’s. I was in your history class where you taught The Civil War. You showed us The Ken Burns “The Civil War” documentary and made history the most fun thing in my life.
You cared about everyone at that school deeply and you made learning so much fun. I remember on one of your tests for extra credit you had us hit our hand 3 times fists closed on our desks and then open on the 4th hit. You would walk your students to the edge of the school, dress up like Abraham Lincoln, which was not hard as you resemble him and recite the Gettysburg address.
That was incredible! I eventually became your TA in your class as an elective and would grade tests:homework for you. One night late after school we graded tests till late and you ordered pizza. We had a blast!!
I appreciated so much how you cared about your students more than any teacher I ever knew. I had moved up from CA right when I started high school. That was terrifying but being in your class, your kindness, humility and wit carried me there.
I look back on that time with the greatest of admiration for you. I think the world of you, always have!
Thank you for sharing your story. I am sorry for this and wish I had found out sooner! You are an incredible human being, and I, like so many others who have commented here and other places, were, are and will forever be touched by you.
I am excited for the opportunities with this surgery and really hope for incredible things. Thank you for living your story out loud for us. Know you have meant the world to me since I have known you. I have tried to model my teaching (never became an official teacher but have taught youth for years in various settings) after you.
God bless you for your incredible heart and investment in the lives of the youth and all you have come in contact with.
Thank you Mr. Best!! Shelby Foote, Ken Burns and all the rest don’t hold a candle to you!
Thank you!
Your fan, Bill Gallo
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My first ALS symptom occurred in 2016, but was diagnosed in 2018. I had severe symptoms ranging from shortness of breath, balance problems, couldn’t walk without a walker or a power chair, i had difficulty swallowing and fatiue. I was given medications which helped but only for a short burst of time, then I decided to try alternative measures and began on ALS Formula treatment from Aknni herbs centre, It has made a tremendous difference for me (Visit ww w. aknniherbscentre.c om). I had improved walking balance, increased appetite, muscle strength, improved eyesight and others.
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“My husband has been diagnosed with ALS since August ‘2021 and started taking Riluzole without missing any doses. We set the time (7:00 a.m.& 19:00 p.m) to take Riluzole in time without missing. After taking this drug for 2 years we noticed more advancements in breathing difficulties, difficulty pronouncing words, and difficulties eating occurred before we made the decision to try different medications Around last year our primary physician made us aware about the ALS/MND programme which has helped a lot of similar ALS cases, we decided to try the program, it has made tremendous difference for my husband, He received the treatment for ALS at uinehealthcentre. com approximately four months ago; since then, he has stopped using a feeding tube, sleeps well, works out frequently, and has become very active. Although it doesn’t cure his ALS, it has improved his quality of life.
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When I was diagnosed with ALS, I felt like my life had been placed on a countdown. The weakness, slurred speech, and muscle loss progressed quickly. I found VineHealth Clinic’s herbal ALS/MND program during one of my lowest points, and it changed everything. Within few weeks, I noticed more strength in my limbs, clearer speech, and a feeling of stability I didn’t have in months. This herbal treatment program gave me back control and hope for the future. Visit ww w. vinehealthcenter. c om I’m deeply grateful for this treatment.
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I was diagnosed with ALS (Amyotrophic Lateral Sclerosis) four years ago. Over time, I faced worsening muscle weakness, movement issues, and constant fatigue. Despite medications and expert care, my condition kept progressing and my hope was fading.Last year, I decided to try an herbal treatment program from NaturePath Herbal Clinic. I was skeptical, but within a few months, I noticed real changes: Improved muscle function and coordination, Increased stability and energy
A renewed sense of hope and control, It’s truly been life-changing. If you or a loved one is battling ALS, I highly recommend exploring their natural approach. It made a real difference in my journey.
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I was diagnosed last July. I was wheelchair-bound. My feet hurt horribly on the foot pedals. I started the ALS/MND program about 4 months ago. I’m now able to walk down the street and back; at least I couldn’t do that prior to the ALS treatment. It didn’t make the ALS go away, but it did give me a better quality of life. I got the treatment from Limitlesshealthcenter. com
Thanks
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