Dancing in the Rain

I have had the remarkable experience this week of long conversations with many friends. It is heartening to know that despite my weakened voice, I can still be understood when I speak slowly and focus on speaking clearly. It is particularly heartening to know that my friends and family are able to get passed my ALS and deal with me as a grownup friend, not a patient to be pitied. There will be plenty of time for that soon enough.

My ALS is the elephant in the room, but it seems that calling it by its name allows us to get beyond the disease to relate with love and dignity.

I am so grateful to have so many people around me who are not scared off by my diminished capabilities.

One of those friends asked how I was doing with “living in the present?” I told her that it was not easy but that I was able to be here most of the time. As I thought about her question later, I started to identify some of the challenges to being in the present.

First, of course, is fear – of the known and unknown future. It’s not hard to slip into preoccupation with where my disease is taking me – a world in which I do not speak, “eat” only through my feeding tube, breathe with a machine, and ambulate on a big power chair. I can usually spot the fear coming on and I have some effective tools to minimize its impact – most importantly, just recognizing it and calling it by its name “fear”.

At the beginning of this journey I could easily be trapped in my past, wondering what I did wrong to deserve this cursed disease. But as I learned more about what was happening to me I realized that there is nothing I (or my Doctors) can point to as a cause. There is no known behavior or circumstance in my past that has lead to ALS. Accepting that, I am no longer obsessed with reexamining every day of my life to find an explanation. Being able to give up the need to dive deeply into my past has also mostly freed me from the urge to rewrite parts of my past. Being able to give up that perverse challenge has freed me a good deal to be living in the present.

Planning for the future is another big challenge to living in the present. While some planning is helpful and important, I have realized that it does me no real good paying too much attention to the fact that at some point I will need to select a fancy power chair and a mini van to get around, or equipment to just get in and out of bed and chairs and the bath. There will be time enough for those decisions as I get closer, and I have excellent resources to get those things done when it is time. So I can label the obsessive planning distraction and get back to the present.

There is of course still planning to be accomplished, days to organize, work and service obligations to fulfill, and vacations to arrange. I still must make shopping lists for goodies to keep my VitaMix happy. But I have learned that I can approach these planning tasks from a present perspective by being attentive to what is really important for me to do now and what can wait.


So in the end it’s about choices. I remember an old adage I learned years ago but had forgotten until recently – “pain is inevitable; suffering is optional.”

On my desk is a little wooden box Roz gave me recently. On the lid are these words – “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Whenever I sense that I am about to let fear, planning or other obsessions get in the way of dancing, I open the box and deposit the dysfunctional thoughts – and I am free.

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3 Responses to Dancing in the Rain

  1. Eva Keach says:

    Beautifully stated,Stu. I wish I could have been there to meet you and the family.Looks like you and Sage made fast friends 🙂

  2. Paul Fitzgerald says:

    Hey Stu,

    Just your read your latest blog. So glad you’re writing this – helpful for you & me & us. You jogged my memory of that saying about “dancing in the rain”. Yesterday I arrived home late afternoon just as the rain started. Across the street were 2 teen-age girls in shorts & barefoot, jumping & skipping in the rain, having a ball. I watched from my car for a moment before it began to pour. They started to squeal (as only teen-age girls can do) and dance & run. For them, rain was the moment, not some inconvenience as many adults think. Something that bugs me is weather forecasters who tell us at the beginning of the day that “It’s going to be a bad day because it might rain”, and that becomes people’s focus for the day.

    Life doesn’t exist without the rain. This week, I did something I haven’t done for 7 years – responded to a proposal bid. While my current work is satisfying, the contractor I work for has a 5 year contract that expires 7/31, and with sequestration, there’s no guarantee it will be re-funded, even though the agency is very pleased with our work & definitely wants to continue. So I responded to a solicitation that was due Friday at 2PM. Not knowing it, I was stepping out into the rain, having to navigate through IRS, Dun & Bradstreet, and the feds “SAM” – System for Acquisition Management – process. I spent 90% of the time with navigating bullshit – the 3 above entities, and 10% preparing my performance related criteria. I delivered the proposal breathless at 1:57PM yesterday, not comfortable that I had a good proposal, and then realized after leaving the acquisitions office that I didn’t even have a cover sheet with my name, etc. on top of the fee schedule. Fortunately I didn’t catastrophize about what consequences this might have.

    This experience is barely a sprinkle compared to your rain, and a reminder about how challenging it is to remain in the moment when forces want to pull us in other directions. Our program has given us rich insights into life, and in reminding us that life is a moment to moment experience. My wife (and I too) are dealing with the Sjogren’s Syndrome diagnosis she received 1 ½ years ago. She has taken to mindfulness meditation in a big way, and found that it’s helping her to stay focused, especially when one of the key debilitating effects – fatigue – grabs her. I admire her and you for dealing with the cosmic meanies head on, not lying down. You’ve got lots of spunk. With all of my Catholic background, I want to remind you of a Latin saying (sorry, I don’t know how to say this in Hebrew), “Illegitimi non carborundum est” – Don’t let the bastards grind you down.

    Peace, Brother,


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