Hospice

13 Jul

1595 days ago Kim showed me the uncontrollable twitch on her left hand. She told me that there were symptoms before then – that in retrospect she may have experienced her ALS for even as long as a year already by the time she she showed me the twitch – but for me, it was when it all started. She was missing keystrokes when she typed, dropping coffee mugs, tripping slightly as her foot dragged just a little bit on the floor. We knew there was a problem but we did not see the storm clouds ahead. 1595 days of ALS is like trying to comprehend how much money is a trillion dollars. Cognitively we know what the word means and we can do the math but it is very hard to truly understand it. Describing 1595 days of ALS is beyond any words I could muster so I won’t even try to explain it.

There are not many days left now. Over the past month Kim experienced a steep decline in her ability to breathe and her overall health reached the point where we are no longer able to give her the medical support she needs to be comfortable at home. We transferred her to a hospice home and today Kim is comfortably resting and surrounded by people who love her. She is not communicating much anymore but in the last week that she was talking she kept prompting me to tell people stories about her life. I talked about how she took a year off of work to camp and hike out west, being kissed by Ben Affleck (after he introduced her as his wife), attending the White House Christmas party, working for Hillary Clinton, meeting Bill Clinton and Ted Kennedy and members of the Supreme Court. So I spoke for her and she beamed at watching someone hear about her adventures for the first time. Many of you reading this now have been a part of at least one of her stories already and some of you are a part of the story she is living right now,

A long time ago, long before we ever could have imagined we would end up living in Arkansas, Kim and I were talking about the future. I had an opportunity to be a Provost at a large urban community college and Kim was trying to figure out her next career move. Kim began to talk about a life with meaning, a life that made a difference. She told me she did not know how to do that but she wanted a, “big, big life!” — but that is not what I heard so I looked at her with a quizzical smirk and repeated back, “You want a big pig life?”

Living the Big Pig Life became our code phrase for finding meaning in our jobs and in our community. I chose an academic life and a year later I got an offer to work at the University of Arkansas – which as some of you may know, means that every day I am surrounded by symbols like these:

So Kim, who always believed in the power of signs, took this as an indication that something powerful would happen here, and it did. But the real story I want to tell is how in this college town of Big Pigs we discovered so many loving and supportive people. The meaningful life is not measured in what we accomplish or how we are recognized – it is defined by how we touch other people. How we love and our loved by others is the Big Pig life and I have felt that personally and saw that happen for Kim every day by friends, family, neighbors, coworkers, caregivers, and near strangers.

The last substantive conversation I had with Kim was about gratitude. She turned her heart towards the people in her life before she embarked on her last journey with this body. She wanted everyone to know how much she appreciated them. How much she appreciated her life.

Thank you.

 

 

 

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25 Responses to “Hospice”

  1. Sue Adams July 13, 2014 at 1:57 pm #

    Kim,you are in my thoughts and prayers.

    • Becky Gracz Stowell July 13, 2014 at 2:17 pm #

      No, Kim and John, thank you. Thank you for showing us love, courage, grace and so much more. We send our love.

  2. Leslie Harris Alexander July 13, 2014 at 1:57 pm #

    Thank you so much for the update. I was thinking about Kim yesterday and today. We were friends in high school. I’m sending her and her family lots of loving thoughts.

  3. Cindy Black July 13, 2014 at 2:44 pm #

    Thank you John for all of these posts and your deep sharing of your and Kim’s journey. You have both been a huge inspiration. I’m sending you both love as Kim moves onto her next adventure.

  4. Nancy Johnson July 13, 2014 at 2:52 pm #

    Prayers of comfort both physically and emotionally. Lance and Nancy Johnson

  5. Heather Hammig July 13, 2014 at 3:11 pm #

    Knowing Kim has been life-changing for me. Allowing her loved ones to share in her “journey,” a gift. Love and gratitude to Kim, and to all who have given so much of themselves to help her along the way.

  6. Dana Felice-Podwol July 13, 2014 at 4:17 pm #

    Thank you for sharing this most difficult and personal update. My heart and prayers are with you, Kim, Jack and all your loved ones. I’ll have a Mass said for Kim at my church for comfort and peace. If you are able, please convey my love to her. She is so special and strong and beautiful. She is surrounded by angels, both human and celestial.

  7. Janet Bachmann July 13, 2014 at 4:55 pm #

    Kim was always such a special addition to White River Yoga classes in Greenland. And her presence at the Fayetteville Farmers’ Market throughout her time in a wheelchair has been amazing. Much love and many hugs to all of you, especially Jack, Barbara, John, and Kim.

  8. bridalcage July 13, 2014 at 5:11 pm #

    John, my thoughts and prayers are with both of you. I know it takes a lot of strength to write this post while you are going through this. May God bless you both and your family.

  9. kathryn July 13, 2014 at 8:54 pm #

    Thinking about you from Ithaca NY

  10. jeanelle July 13, 2014 at 9:11 pm #

    I love you all so much.

  11. Juliet Richey July 13, 2014 at 9:42 pm #

    I did not know Kim well personally, but she taught some of my yoga classes at white river yoga and made a big impression on me. She was always so very vibrant and lovely to be around. She is a truly beautiful spirit and has touched many people.
    She and her family are in my thoughts. Namaste, Kim.

  12. Marie P. Witzel July 13, 2014 at 9:44 pm #

    As her granny I well remember the extra ordinary events in her life and all the genuine effort she put into achieving her goals. Thank you, John, for sharing with all of us.
    Love, granny

  13. Aubrey Pate July 13, 2014 at 11:00 pm #

    Thank you for sharing these updates though it must be so hard to put it all into words. May peace be with you all and may no fear come into your hearts. I remember Kim saying something to that effect in her letter when she was diagnosed. Hugs to Jack.

  14. Gabriela Biber Seiders July 14, 2014 at 8:53 am #

    Kim and John, thank you for sharing your journey with us these past years. I cannot adequately express how often you have been in my thoughts.

    Kim I feel lucky to have experienced your passion and blazing spirit back in the mid-90s. Though it’s been a long time, your dazzling smile and enormous energy are etched clearly in my mind.

    I send you my love and prayers.

  15. joe dombroski July 14, 2014 at 9:24 am #

    My prayers are with you and your family….

  16. Cindy bamberg July 14, 2014 at 9:46 am #

    You were blessed to have Kim in your life!

  17. Diana Peer July 14, 2014 at 10:35 am #

    Without knowing Kim at all and only knowing John professionally, I have been blessed by sharing this very personal journey through the blog postings. Having recently lost loved ones, both through a long journey of declining health and through accidents, my heart is heavy for you. I can only offer you the consolation that it appears Kim is well loved and that she loved well. We want so much more, but I pray you will find comfort in that love that will not pass away.

  18. Janet Clark July 14, 2014 at 2:09 pm #

    Love is all there is. Mitakeye Oyasin. Every blessing to you all.

  19. Rachel (Simpson) Tompkins July 14, 2014 at 3:39 pm #

    Thanking God for her “Big Pig Life!” I love that. Covering you all in prayer.

  20. Eric walker July 14, 2014 at 9:00 pm #

    I never new of Kim’s journey till today. I grew up with her and family on west hill. I feel so sadden but a relief for her to take her beautiful spirt and strength on to her next journey. May you sore with the angels. 💛💙💜💚❤️

  21. Polly Wood July 14, 2014 at 9:12 pm #

    Loving you, Kim!!!!

  22. Michael Holmes July 15, 2014 at 4:12 am #

    On reading this I am full of emotion; sadness for you Kim and your family, but also joy as I think back to the amazing memories I have of Kim; from Sue Battaglini’s 4th grade class to an impressionable 15-year old being driven back from Seneca Lake by Kim in her Dad’s red MG convertible. I am thankful that I knew her in this life. I do not pretend to understand all of the spiritual ideas and beliefs that she studied so avidly, but I cannot believe that a spirit as powerful as Kim’s could simply end. Good luck to you Kim in the next adventure. Love to all of you – Jon, Jack and the family – at this incredibly difficult time. My thoughts are with you. Michael

  23. Joe and Pat Tempesta July 15, 2014 at 1:10 pm #

    All our love to you and your family. You are all in our thoughts and prayers daily.

  24. Lisa anter July 15, 2014 at 9:49 pm #

    Sending my love and prayers to you Kim and your family!

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