Long about Thursday afternoon each week I feel the urge (and perhaps the need) to set down another 500 words to share. It’s not so much about meeting a deadline, as honoring what has become an important internal rhythm. There is a lot going on, and stopping to think and write is a helpful way for me to sort through the complexity and urgency of so much of my life these days.

Tomorrow we have our first visit from Hospice. Now don’t start picking out wreaths quite yet. In fact, don’t even think about wreaths at all. When that time comes there will be better choices.

So, about Hospice. One thing about ALS that has become quite evident over the past year is the multitude of body systems and daily activities affected. As a result, life is becoming more and more complicated. My eyelid muscles are weaker, so I don’t blink completely. Therefore my eyes dry out and I must use eyedrops to see clearly.

I have written here about the decline in my ability to eat and swallow solid food. Now I take most of my daily calories as liquid supplements through my feeding button. Remember what your mother told you about balanced diets, and getting enough fiber. Guess what. On this new diet, my digestive system is truly f******* up. This is made even more complicated by weaker abdominal muscles, making it harder to “push”. And of course it is harder to swallow those capsules that might help ease matters. (Hey stop blushing – we are all grown ups here.)

A large part of my life these days is spent in the small triangle between the kitchen where I prepare my liquid delights, my desk where I “eat” and stay connected, and the toilet. Luckily I am still ambulatory enough to walk these short distances safely. But that will become more difficult before too long – hence hospice.

We will learn from them the steps we need to start preparing for these next months. Steps that will help my family keep me safe and comfortable – and able to concentrate on what is so important outside of my small triangle.

Because the highlights of my week continue to be opportunities to spend time and connect with family and friends. This week I have had out-of-town visitors passing through and coming to see me. I have had important occasions to serve the community. We have seen excellent movies and theater. I have enjoyed glorious early Autumn days. I have driven around in my convertible.

And while doing this I have been fortunate to experience the whole range of emotions. I have laughed out loud at silly jokes my grandson told. I have been re-exhilarated watching the video of my skydive. I have challenged myself at the gym. I have been elated as the Red Sox close in on the pennant. I have sat and cried with Roz as we talked about out future. I have been swept up in the love that surrounds me.

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9 Responses to PLANS

  1. Maybe I should be “planning” a little better too. When you get a chance, tell me about the Hospice you are meeting with – OK?

  2. Linda Parks says:

    I just want you to know you are a great teacher. I learn from every blog. You, Roz, and Simon are always in my prayers.

  3. Eva Keach says:

    Stu, although we have never met in person,you and Roz are in my heart.

  4. Bruce Kramer says:

    Stu, as always I appreciate your thoughts. i do have one word for you from an ALS buddy: MiraLAX!

  5. dan says:

    Stuart – Oh how I look forward to reading the chronicle of your most challenging journey. It is so painful to read of your struggles and it causes so many recollections of my lovely Jane 3 years ago…yet it is so much of that on which I need to reflect.

    But the vivid image of the Constitutional Triangle is PRICELESS…this coming from one whose constitutionals are…well important to a “satisfying” day. Hooray for Hospice, they know what works and how. God Bless.

  6. Scarbrough Marsha says:

    I laughed and cried at the same time. What an inspiration to me to help remind me what is important, I admire you so much and I as I read your Thursday remarks a flood of wonderful memories return. A hero to us all.

  7. I was planning to make almost the exact same comment as Bruce; Miralax is a must for people with ALS!

  8. Paul Fitzgerald says:

    As I’ve been reading your blogs, I’ve been thinking about how well you express both your thoughts & feelings & with such dimension. This is sort of your autobiography, a legacy of the spiritual journey you’ve been on for so long. without which you would be hard pressed to deal with all this “stuff”. Daily life ain’t easy, but you have a solid perspective to help keep your balance. So keep on trucking, buddy…and grab all the hugs you can.
    Cheers, Paul

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