So, how is Kim?

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.”