So, how is Kim?

27 Mar

I get asked that question about 5 times a day, “so how is Kim?” and I don’t mind being asked at all. I mention this because I probably seem to pause for a bit longer than I should before I answer and that is because it is a very complicated question. It usually takes me a minute to decide which answer to give you. Then every once in a while the followup question is, “and how are you doing?” This, to be honest, is far less likely to get a nuanced answer. I tend to focus on what I am doing in the moment and while I allow myself the opportunity to feel all the strong emotions that are part of this journey – I don’t tend to bring that with me out in public. All that said, I appreciate the sentiment behind people asking and the question never puts me off – and if it is a private moment I may even give you a real answer.

So how is Kim? Well, we still laugh more than we cry. She takes great joy in every moment she has with Jack (turning 4 next month) and delights in letting Jack eat candy before dinner and ice cream for breakfast, connecting with friends, planning fun events, and in every way being the same adventurous and silly Kim we all know. We filled out March Madness brackets (even though we have not found time to watch any games) and we have two scheduled dates each week. She is constantly looking to help people she comes in contact with and misses teaching. She is producing more crafts and art projects than ever (with the help of other people’s hands) and she is as active as her body will allow (still going to the pool 3 days a week). All that is to say that she is engaged in living a joyful and meaningful life and we are challenged most days to simply keep up with her.

When we do cry our sadness does run deep. Each major step along the progression of ALS brings a devastating loss of function that on its own would be tragic. Even though there is fairly consistent decline, there are also tipping points where the ability to do something is lost. At one point Kim simply lost the ability to walk (and is now almost exclusively in her electric wheelchair). Recently Kim “lost” her right hand, and so now we almost always feed her. If any of us lost our right hand today it would be a crushing blow and for Kim she must take these one after another and then adapt. One of the ways we adapt is with new technology and we recently went to Little Rock where Kim was evaluated for a new optical tracking system which will allow her to operate a computer, email, a phone, synthetic speech generator, even the TV remote all with her eye movements. We are excited about the potential of this new technology. Mostly, because we feel it will help her be able to write again and to reconnect better with friends and family by allowing her to use the phone and her email. She will also be able to talk to people who may not be used to how her speech has been affected by ALS. Often new people will understand a quarter to half of what Kim is saying. Eventually everyone warms up to her speech patterns although Jack is the only one who understands every word.

The hardest moments though are not adapting to the physical decline. It is the fear of suffering. Kim does not want to starve to death nor does she want to suffocate to death and the long run up to that ultimate ALS prognosis is understandably excruciating when our minds land on those thoughts. She weeps for her soon to be 4 year old son Jack and his loss, and for her own time with Jack that she will never have. She wants to talk about how and when we will tell Jack that Mommy is going to die. She will see an image like a wedding picture and it will occur to her that she will not get to know Jack’s bride or his children. We laugh more than we cry, but when we cry – we cry hard.

It is the urgency to live these days with meaning that has been the most transformative for all of us. It is two different things to simply stay alive and to live a meaningful life. Perhaps in a different post I will talk about this more, but for now I will simply say that when every moment matters your whole way of living, thinking, loving, even breathing changes. Our home should have a revolving door on it with all the people who visit and while it used to be the case that we leaned on friends and neighbors to help with simply keeping our heads above water – now we have just as many people coming to spend time with Kim in ways that create a deeper meaning to each day. They come to create art, they write to her about her spiritual journey, they fill our home with music, they bring their children to play with Jack.

So, how is Kim? Kim is a force of nature who is allowing herself to feel the depths of these powerful moments in her life. As she told me yesterday: “When a tree falls in a forest it does not cease to exist, it becomes something else. I don’t want to spend this time focusing on what is ending. I want to be exploring what I am becoming.”

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15 Responses to “So, how is Kim?”

  1. Robbyn Golden March 27, 2013 at 11:30 am #

    You are two amazing people. God bless you both!

  2. Melissa March 27, 2013 at 2:10 pm #

    Thank you so much for sharing your journey with me. Your posts always help me take a fresh look at my life, a different perspective.

  3. Pamela Brandt March 27, 2013 at 2:40 pm #

    Kim inspires me every time I see her.Her eyes twinkle and her smile has a radiance of everlasting joy and love. So glad to know Kim, John ,Jack and Barbara. Love you all.

  4. Joy Caffrey March 27, 2013 at 3:26 pm #

    John, beautifully written. Thank you for clarity and truth. I appreciate you and all of your family sharing Kim’s journey so poignantly. Thank you for acknowledging, too, your own journey. love and light, Joy

  5. marie p. witzel March 27, 2013 at 3:32 pm #

    How loving of you to share this journey and for us to recognize the positive and forward approach to life that can be expressed in many ways. You are all in my thoughts and prayers every day……granny

  6. Dana Felice-Podwol March 27, 2013 at 4:06 pm #

    ❤ Sending love, hugs and prayers your way!

  7. Peggi Loveless March 27, 2013 at 5:48 pm #

    I am always amazed at profound effect reading one of your posts has on me, John. Kim is such an inspiration to all of us who are fighting much less life-changing battles.

  8. Becca March 27, 2013 at 5:52 pm #

    Thanks so much for sharing this journey. It is truly transformative. As you share the way you and Kim work to live a meaningful life with ALS and explore who you are becoming, it inspires us all to do the same. Love each one of you.

  9. Ginny Weber March 27, 2013 at 5:54 pm #

    John and Kim, My love, tears and smiles go with you both through your life experiences. Bil and I are and have been experiencing some pronounced health issues over the last couple of years. And I want to tell you, you both are an inspiration to me. You give me strength when I think strength is gone. I smile at Jack’s pictures. He is adorable. Children and grandchildren are such a blessing.

    Thanks for sharing…..hugs to you all with bushels of good thoughts…..Ginny.

  10. paul coggins March 28, 2013 at 7:43 am #

    I remember asking you at Kripalu at the new years gathering what Kim was suffering from and feeling devastated when you told me, ALS.
    I have lived in the same house as an ALS sufferer. It is not easy on the patient or those around her to watch her physical demise while at the same time know that her mental status does not change ( saying that i am sure that my friends mental status did change and continued to do so all the way through her illness)
    What I took from being around my friend (Katherine)was an incredibly profound spiritual experience in surrender.
    Being around her will stay with me always. The love that comes from, and to, an ALS sufferer cannot be described but only experienced.
    My love goes out to Kim and to you and to Jack on your journey.
    Om Namah Shivaya

  11. Jeff P March 28, 2013 at 8:09 am #

    The optical tracking system is amazing. Michael uses it. He still working with the Patent Office from his bed and got a 112 percent efficiency rating this past year, which is amazing given his condition. Keep the faith!

  12. Pamela Cobbs March 28, 2013 at 8:37 am #

    Morning, John How are you? First of all I would like to say…that you are very Blessed to have such a Beautiful, Caring, and Loving Wife. I really enjoyed working with Kim. She is a very kind and Loving person inside and out. There were days when I wish I could’ve turn back the hands on the clock because I didn’t want to leave her side. She is so Amazing.I have witness some her everyday struggles in life its makes me sad. But when I sit back and think then I come to realize she have a Loving family and lots of Dear friends whom love and care for her so much. Jack is so adorable ..he would say some of the funniest little things…but he loves his mommy I could see it in his little eyes.I feel so Blessed to have met Kim and her Loving Family and Friends . You’ll are in my Prayers continue to stay strong. Love Pamela

  13. Kat Carter Merrick March 28, 2013 at 11:55 am #

    John, thank you so much for your posts. I feel like I am there with your and can see and hear life in your house. xoxoxoxoxo

  14. Marvin and Sandy Rose March 28, 2013 at 12:48 pm #

    Thank you for your post. We remember when we first met you and Kim. she was wearing her wedding gown on the cruise ship. You had just gotten married on the beach. We had a great time with both of you. We are praying for you, Kim and Jack and wish we could do more for you. Lots of love and hugs.

  15. Unshakable Hope April 1, 2013 at 2:23 pm #

    I have had ALS for almost 17 years. I use an eye-tracking system – it can be frustrating, but I am sure glad I have it! Kim will like it once she gets used to it. God bless.

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