Now Comes the Pain

Up to now I have been fortunate that my symptoms have not included much pain – just occasional twinges. But over the last week or so the pain level has gone up dramatically, especially in my neck and back as those muscles have weakened substantially.  The weak muscles make it hard to hold my head up and find a comfortable position, especially when sitting up.  I can’t easily hold my head steady, so even as I type this (using a stylus with my right hand) I must stop and stretch after every few words.

Along with the weak neck I have just about lost all ability to swallow and eat even thick purees through my mouth — so no more oatmeal or VitaMix soups. The difficulty with eating is that I now lack the ability to move food (even thick purees) around my mouth and down my esophagus safely.  And weak lips means I end up with more on my chin and in my beard than in my stomach.  So all my nutrition and hydration now goes through my button.

To deal with the pain I have started taking more heavy-duty drugs regularly.  They dull, but do not eliminate, the muscle pain.  Massage has helped some, but the effects are temporary.  Because of the drug side effects and neck mobility issues I have decided that I am no longer safe to drive.  I am so glad I have had my blue convertible these last few months. Turns out losing that independence will not such a big deal for me –  I have no trouble getting a ride anywhere I need to go.  Those places are more and more limited because moving around or sitting in one position for too long is simply getting to be too uncomfortable.  Sticking close to home seems even more desirable now.  Not sure how much longer I will be able to enjoy movies or theater out.

If you are now expecting some surprising uplifting learning from these experiences I am afraid I must disappoint you dear reader.  There is no upside to these developments – except the likelihood that these changes signal acceleration in my disease progression and an end to the half living that is the curse of ALS.  It is hard to hear friends tell me I am looking good when I know I look emaciated and have become largely dysfunctional as a working human being.  The question is at what point does the effort and pain of trying to live with at least a modicum of dignity outweigh the value of the love and caring I am able to give and receive from family and friends close to me?

One of my recent gifts to myself is a marvelous new book containing facsimiles of Emily Dickinson’s envelope writings – short scraps of verse and thoughts penned on used envelopes.  These lines caught my eye today:

In this short life that only merely lasts an hour

How much – how little –  is within our power.



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11 Responses to Now Comes the Pain

  1. smilecalm says:

    may there be ease
    and peaceful moments
    in your body, heart and mind

  2. cderr says:

    Not in Vain

    If I can stop one heart from breaking,
    I shall not live in vain:
    If I can ease one life the aching,
    Or cool one pain,
    Or help one fainting robin
    Unto his nest again,
    I shall not live in vain.
    –Emily Dickinson

    Stu, this is what you do…

  3. Frank Petho says:

    Stu, It’s not the “surprising uplifting learning” that draws me to your chronicles. It is you, your indomitable spirit, your transcendence, and your willingness to share. That’s true power. You still have it, Dickinson notwithstanding. Frank

  4. I’m sorry you’re in pain. Have you tried a neck brace? I used to use one and found that it helped, but no longer have a need for it because I stay reclined in my wheelchair all day with a pillow behind my head.

  5. Corky Rainey says:


    I don’t know how to express in a positive way what I feel as I read what you write. It’s a rage to me that it is so unfair for someone who writes so well (after all, you did it for a living!) to have to struggle so much at this time in your life. Just know that you are in my thoughts and prayers. Peace, my good friend. Corky

  6. Phil Lilienthal says:

    Your perspective is wonderfully philosophical as you realize so vividly (and, sadly, uncomfortably) what a brief journey we have and how to make the most of it. With deterioration palpable, it becomes more real to you. So many of us keep the end on the back shelf, out of sight, until what we deem “a tragedy” strikes. All it is is another term for the inevitable. Thanks (I think) for making it more real.

  7. Ok So Far says:

    I’m so sorry about this pain. No need to search for positive things to share. Your honesty is much appreciated. You are in my prayers.

  8. Bruce Kramer says:

    Stu, I know this darkness of which you speak. Your question of balance between dignity and love, between the energy required to stay engaged and the reward of the engagement is not just a question of ALS. It is a question of living. For me, your words are a tiny light of truth and a signal of the new beginnings that I always seek in this darkest of times.

    I hope you don’t mind, but you will be in my next blog for precisely the light that you bring. Blessings on you and your family. Have faith that both of us continue to fulfill that which we must in the face of what we have been given. Much love…

  9. Paul Fitzgerald says:

    Stu, the danger of the holidays is to be caught in a whirl of activities and to miss something really important. That’s where I’ve been, so I missed responding to your last blog. I really hate that your body and its beauty is now deserting you. You have contributed so much in your life – so I want to share something that for me has a real resonance with who you are. I don’t know the author.
    “There is an old tradition that God sends each person into this world with a special message to deliver, with a special song to sing for others, with a special act of love to bestow. No one else can speak my message, or sing my song, or offer my act of love. These have been entrusted only to me. So from my heart I want to say this to you: Please believe that you have an important message to deliver, you have a beautiful song to sing, and a unique act of love to warm this world and to brighten its darkness. And when the final history of this world is written, your message, your song, and your love will be recorded gratefully and forever.”
    I greatly hope that the love so many of us have for you can soften the pain.
    Cheers & Love, Paul

  10. Gail says:

    Stuart, we are thinking of you down here in Richmond. Thank you for sharing what you’re going through. Love to you and Roz. -Gail and Steve Covert

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