Last week's Lewy Body Dialogue Chapter

 Ch.39. “The Apocalypse Arrived and Yet it was Not Apocalyptic.”

            This quote comes from the novel Exit West, by Moshin Hamid. The author writes about the difficulties facing people emigrating from their native lands to new places. Hamid notes that life goes on in these circumstances and people make new friends, discover new activities, create new opportunities, and, eventually, “desirable futures begin to emerge.”

            I can’t imagine a better description of how things have changed since Lewy Body entered our lives. I think Lewy Body Disease, as awful as it truly can be, has opened us to new friends, new activities, and new opportunities. For instance, we have made many new friends in our Lewy Body support groups; Pat discovered a new activity by joining the memory choir; and we have found an opportunity to deepen our shared love through writing this journal together.

            Let me go a little further. I am retired. I no longer go around the country facilitating professional workshops. I haven’t published a professional or trade book for several years. I no longer make a living as a domestic violence and anger management counselor. All these things were central to my identity as a productive, contributing member of society. Many people like me, whose careers are central to their identity, get lost in retirement. Who am I if I am not doing these supposedly important things?

            A large part of my answer is that I am now half of a care partner duo, charged with helping make Pat’s and my life as rewarding, happy, and healing as possible. I make our meals; I drive the car; I’m in charge of Pat’s medicines. I read a lot about Lewy Body; I’ve become our social secretary; I go to my own caregiver meetings for support. I have become a voice of optimism (not a natural strength) when Pat feels down. And here’s what’s important: I feel I am doing exactly what I’m supposed to be doing with my life. My life is full of rewarding moments. I feel loved and loving.

            Yes, Lewy Body is the apocalypse. And yet, as Hamid writes, it is not apocalyptic.

Pat’s comments on “The Apocalypse Arrived and Yet it was Not Apocalyptic.”

            I have an illness. How is that an “apocalypse?” Tell me, what has ended and been destroyed? I wouldn’t know what it is. I don’t think Lewy Body is an apocalypse. I think it is a big change. Could you even say it is a change? I don’t know if you could. It’s some kind of change. There are changes that have happened to me partly because I have Lewy Body. For example, the inability to drive and go to certain locations which were very nurturing for me and powerful for me has ended. That doesn’t mean that everything will end but some things have ended that were very important to me and to my experience of the world.

            A lot of things have changed and some of them are useful and good for me but I don’t think the essence of that is very easily understood by other people.

            I’m not saying my life hasn’t changed in positive ways. I’m sure it has. However, there are some parts of my life and experiences I’ve had I’m no longer able to share very well. I can experience them but it is hard to take the time to share what they really mean to me.

            Except that I love Ron as I always have and even more. I thank the Lord for him. 







                                                                               





  

  

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