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  https://bigskysoulshine.org

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









10 comments:

  1. When I was involved with and working at Beyond Baroque I really enjoyed being in his world. My favorite part of the day or time I spent at Beyond Baroque, was hanging out at the bookstore and just chit-chatting. A remarkable man.

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  2. Beautiful, truthful tribute to Mark. It was so hard. So unfair. And he was so loved. And you all were so brave. All that love lives on in you -- Jackie and in the boys.

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  3. One more thing -- watching Micah's edit of Sedona was bittersweet -- so many tears.

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  4. Such a wonderful tribute Jackie. Markymoose is smiling with love and pride for his family right now. It's always been incredible to me how much 'living' you did with mark the last 12+ months, so many memories to cherish. Much love and hugs to all of you ❤️

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  5. I left this note on FB too.

    I met Mark at Beyond Baroque. He was a great friend, supportive writer, and never shy with his opinion. Once I met Jackie it was never Mark, always Mark and Jackie. Somehow they really were two halves to a whole. For welcoming me into your lives back then I will always feel blessed (Niner too!) Jackie I am so happy you Mark and I were able to spent that day together in Venice not so long ago. Fun times like old times. I will keep that memory always. Mark, you may be gone from this world, my friend, but it will ever bear your light. Peace Brother. - Stuart

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  6. Jackie, Andrew, Micah, and Howie, I am so deeply sorry for what Mark endured, for what you endured, and for your loss of him. I wish you healing, peace, and love. Karen

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  7. My heartfelt condolences to you Jackie and your boys. When I got the text from Meredith the day that Mark passed I felt such sadness. Although I didn't really know Mark personally, I know Meredith always liked him very much. I've always been amazed the way both of our family's paths crossed in the beautiful town of Big Sky....it's such a small world....and a better world that Mark lived in it. Please know you are in my thoughts and I hope to see you again sometime in the near future. Hugs. Lynn Gardner

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