I am Bruce Daman

living with ALS


Through the summer, as my physical abilities continued to deteriorate, a friend with ALS said it’s as if a thief comes every night and steals a little more of you.

Living Your Best Life: 2020 – ALS, Covid and The Yellow Parakeet

In May of 2019 a neurologist looked me in the eye and said you have ALS. I didn’t hear much after that. It was a beautiful early spring day in Maine and all I knew was I needed to get out of that small antiseptic office and into the warm sunlight and listen to the birds.

While I had been sick for over eight months, lost 65lbs and undergone numerous and invasive testing, with no diagnosis, ALS was never in my mind.

Everything changed from that moment on.

The journey is emotional and frightening. I am fortunate to have a large group of family, friends and co-workers who have rallied around me.

An ALS support worker told me; “no day will be like the next”, and she was so right.

I had to leave an executive corporate job and co-workes/friends that I enjoyed and who inspired me. I was always an extreme extrovert who ran on the energy of other people. I thrived on the ability to manage multiple projects, people, budgets – like the man spinning plates.

The change to being retired at 62, ill and isolated was a shock that had me starting to question everything.

My support group really helped me manage the daily ups and downs of emotions through my first year. I was having numerous lunches, coffees and happy hours with friends.

My co-workers used to organize a monthly happy hour where 10 – 20 people would show up at a brew pub. I was able to walk and get around and was still active as a board member of the food bank here in Maine.

As a Christmas present in 2019 I surprised my wife with a Caribbean cruise for the end of February. We also learned that night that our first grandchild would be born in May.

We boarded the ship on 2/23/20 and came home on 3/1/20. While onboard I remember hearing Italy was shutting down their schools and thinking this Covid thing could be serious.

In a flash Covid descended and like millions of others I was secluded in our house. We are so fortunate to have a nice home, be financially secure and live in a beautiful part of the country away from the “big” city.

But the isolation began to weigh heavily on my psyche. Zoom is all well and fine but it does not replace real interaction.

My 95-year-old mother passed in mid-June, alone in her nursing home. 36 hours later our first grandchild Lilly was born. Both life-altering events that had to be experienced from a distance.

Through the summer, as my physical abilities continued to deteriorate, a friend with ALS said it’s as if a thief comes every night and steals a little more of you.

We purchased a single floor, handicap-accessible condo and started the stressful process of moving and selling a home we lived in for 35 years.

During this entire time one of the ALS support groups I attended focused on mindfulness and meditation. During my business career and being a parent I began to understand the power of being in the present, living in the moment.

To cope with ALS, this becomes essential as there is no cure. My life will end sooner than I ever imagined. I will not get to see Lily grow up, see my children flourish as adults, enjoy the golden years with my wife.

We had bird feeders in our yard for years and it became a popular spot for numerous birds all year round. There is a serenity to watching different birds come and go that I enjoyed even more as I was confined by both ALS and Covid.

One day in September a bright yellow bird showed up among the brown and gray native birds of Maine. We were informed he was a parakeet, but no one knew where he came from. Did he escape or did someone let him go?

He would come to our yard every day to feed and bask in the sun. It became a source of joy and comfort to see him. We decided it was a “him” for no good reason.

A local woman with an avian connection began to try and capture him. Along with neighbors and others they would trudge through our field with nets. She spent months coming early mornings attempting to catch him.

He was very fast and never allowed his pursuers to get close enough to capture him.

We were told he could not take a Maine winter and needed to be caught if he was to survive. This sparked the discussion, was it better to catch him and put him back in a cage or let him live his new life, free, one day at a time.

As we moved into October and November, we started texting every morning when we would see him. There were some cold nights but he managed to survive.

December came and he was still with us. On December 6, we had a snow storm. We were sure that was the end. But there he was the next morning, his beautiful yellow standing out against the snow. (See photo)

The nights of December 7 & 8 were bitterly cold, and every morning I was so happy to see that patch of yellow among the brown branches in our yard.

On the morning of 12/8 he landed on a lilac branch right in front of our window and we marveled at his beauty and resilience.

This was the last time we saw him. I still look out every morning hoping, but also content that he lived his best life on his terms, one day at a time.

If you are depressed you are living in the past.
If you are anxious you are living in the future.
If you are at peace you are living in the present.
Lao Tzu

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