Saturday, December 30, 2017

A Life Well-Lived: With love to Markymoose

Dear Followers of Markymooseinbigsky,

I think most of you know by now that Mark passed away on December 18th, 2017 in our home with Howie and me present. His brave and open battle with ALS ended rather suddenly. I still cannot believe he is gone. Micah drove home from college the next day, our families all arrived by Wednesday. We put together a beautiful memorial service at The Big Sky Chapel on Thursday with burial in the Jewish section of Sunset Hills Cemetery in Bozeman. On Friday we continued to celebrate his life with an open house at the riverside barn at The Rainbow Ranch Lodge in Big Sky. So many beautiful stories and tributes. The family all left on Saturday. The boys and I went out over the next couple of days and enjoyed life in Mark's memory; downhill skiing, cross county skiing in Yellowstone Park, seeing the new Star Wars movie and Christmas night with many of our closest friends. Friends who walked this path with us from start to finish. At the end of the evening, we all took a walk in the falling snow; holding hands, laughing, crying, hugging. It symbolized the end of the traditional Shiva period. Since then, the boys and I have all put in some time at The Hungry Moose; working the registers, making deliveries, stocking shelves, carrying on in the memory of the man who started it all and who gave so much of himself to it's success. 

Mark had not posted on this blog since early November. Not because he was so sick but because we were living. We took a vacation to Sedona, Arizona which included a day trip to the South Rim of the Grand Canyon. Our friend, Klaudia Kosiak performed a classical piano recital in Mark's honor on his 56th birthday on November 30th. He attended our staff holiday party.  A few days later we held our traditional Sagittarian birthday party where Mark enjoyed a little 2005 Bordeaux in his feed tube. On the day he passed away, he spent three hours that morning with a speech therapist trying to improve his ability to communicate on the eye gaze computer. He made a little headway and we were hopeful. 

The flip side though, was that life was becoming more and more difficult for him and for our family. Here is one of the last things he wrote with the eye gaze computer that we never got posted:

November 19, 2017

the world works in mysterious ways
I have become incontinent especially at night
I can't help it
I can't believe it's happening to me
Jackie has to clean me up
it takes her at least an hour
I have this silly grin on my face
I don't think it's funny at all but I do
it's an ALS inappropriate behavior
I also try to wake up jackie 
it takes me a lot of time to wake her up
I wear the mask and my teeth are starting to fall out
ALS isn't fun or funny
we are in Sedona on vacation
people keep walking away from me when I am talking to them
people move my chair when they feel like it
I have to have extra patience

I would have titled that post "The Indignity of ALS". Incontinence, loosing teeth, constant suctioning,  not really being able to communicate what was in his mind, putting up with so much. How did he do it? How did we do it?  We aren't doing it anymore. I hate that Mark is no longer here with us, even in the state he was in. I hate that I can't tell him everything I want to tell him and that he can't advise me on what to do anymore. I might appear strong but I feel like half of me is gone. 

To everyone who walked this path with us-which is pretty much everyone who knew and loved Mark- the boys and I send out our most heartfelt appreciation. We learned how to reach out. We learned how to accept help. We learned how to share our grief and sadness. We learned how to comfort others who loved Mark too. We learned how to try and make the most of each day when the world seemed to be conspiring against us. Mark lives on in his three sons, in me and I think in each of you too. He was just that kind of guy. 

Sunset hike. Click below for Micah's Sedona edit. 

Evening stroll in Salt Lake City

with Klaudia Kosiak 

Mom and Alex out for the birthday concert

With Candice and Nazha, December 12, 2017

Mark's service and celebration are available for viewing on the Big Sky Soul Shine Facebook page. You don't have to be on Facebook to see it. You can also go to

Lanterns lifting off at Rainbow Ranch

With love to everyone who loved Mark and supported our family. 
We could not have walked this path alone. 

Jackie, Andrew, Micah, Howie
and Markymoose too, of course