The Gift

My friend Kerry gave me a gift this week–Jessye Norman (what a voice) singing sacred music. He made sure that I knew that Track 10, “Great Day,” was a spiritual that his high school choir could rock out on. Lest you think Kerry is some raving religious guy who thinks I need spirituals to listen to, then let me remove that perception. He is one of those people who doesn’t seem to have a lot of need for churches and religion, probably a so called “secular humanist,” whatever that means–but he is a deeply spiritual man. And the gift—Jessye Norman—was a thoughtful gift, a gift to my spirit, something that lifted me and caused me to think about the gifts of dis ease. Those come in bundles—bundles of clarity, urgency and Joy/Grief. I know there are others, but these are the ones that speak to my spirit today, and because of my friend’s gift of Jessye Norman, I want to blog about the gifts of ALS.

There is a clarity that goes with a diagnosis of ALS—clarity of thought, purpose, feeling, joy and yes of course, grief. Most of us can imagine how a pronouncement like “you have ALS” would affect us. What is harder to imagine is the sensual experience of such a thing. My ears constantly sing to me, my eyes see through walls, I taste sunrises, feel colors. The clarity of love is so intense, I almost have to check it like it is an energy surge. And I’m not talking about the symptom of extreme emotion (a symptom of many with ALS). While I admit that my emotions run stronger now, it is the blurring of the lines between my senses that offers such incredible clarity. I KNOW what is important now. I know that every experience has multiple layers, each to be felt and analyzed and kept. The auto-pilot of living from event to event is completely gone. Pay attention! pay attention…. If I swim, it is like it might be my last time. If I eat, it is as if it was my last meal. To love, live, breathe, sense, and experience the tiny moments of this life has taken on a meaning I can only relate, but not adequately explain.  But it is clear to me.

And then there is the urgency. Many of you have heard me liken ALS to death by a thousand papercuts. I try not to dwell on this aspect — the progressive weakening of my body, but I know it is there. This causes a sense of urgency for this life with these capabilities, in preparation for the next life which is less physically able. It isn’t enough to work. It isn’t enough to love my family. It isn’t enough to connect with friends. It needs to be done with passion, abandon, love and light. There is no time to hold grudges, be afraid and not forgive. There is no time for games. There really are places to go, people to see and things to do, and time is wasting. There is a gift of joy and passion, love with abandon, friendships that aren’t afraid to say “I love you.” I just don’t have time for bullshit anymore (many of you who know me wonder if this is a change).  This urgency is not like when I was younger.  Then, I admit that I was insensitive, impatient and arrogant as only youth and inexperience can be. I know now that urgency is not abrupt.  It requires space.  There is no reason to be abrupt or hurtful, and there is no reason to be less than caring by naming truthfully what is in the room. That is the gift of urgency, and I am thankful for it.

Which leads me to the gift of what I have come to call “Joy/Grief.” Let me explain with an example from this weekend.  A long lost friend/teacher and I haven’t been in touch  for a number of years. He had been trying to arrange a time when we could talk by phone. I was supposed to call him on Friday, but I didn’t. I just couldn’t. It seemed so heartless to carry on the conversation along the lines of, “How’s things? Are you still doing (fill in the blank)…?” “Oh not much. Diagnosed with ALS.” So I wrote him yesterday morning and asked his forgiveness for not calling, and gently gave him my new framework. By yesterday afternoon, I had received the most unbelievable note from him. In his email, he talked right up front about being devastated.  But then something funny happened in his note.  He remembered my early years as a music teacher, and specifically my bringing my Franklin kids to perform Dido and Aeneas at Ball State University. He reminded me that when we got to the chorus, “With drooping wings, ye spirits come, and scatter roses on her tomb,” at the end of the opera, he had suggested I turn around and conduct the audience.  He had brought his madrigal group, who knew the piece, to hear our performance, and when I turned around, they sang with us.  He spoke of his devastation, and he remembered unbearable joy in music as 60 high school kids and 25 college kids joined voices on what is probably one of the saddest pieces ever written. What a joy to receive that memory, and what grief hung on every word that he wrote. This is what I mean by Joy/Grief. The two are inseparable, contradictory yet harmonious in this dis ease existence. Joy/Grief is a gift. It is a reconnection soul to soul, even as physical disconnection is taking place.

It may seem funny to speak of the gifts of dis ease. I know I would probably not have thought to think this way, even three months ago.   Kerry’s gift of Jessye Norman has reminded me that gifts come unlooked for. There are gifts of ALS, for which I am most thankful.  They have given me the clarity to know that this life is one that is passing, that if you pay attention to the inner gifts, there is amazing grace, and that friends can still surprise in wonderful ways.   Even as I feel my body breaking down, the clarity, urgency and Joy/Grief are too sweet to pass up. They make the hard parts easier, and they remind me that even if there was a world without ALS, there is a need to live the gift that life truly is.

Thanks for listening.  Yours in ALS,



20 thoughts on “The Gift

  1. Imagine what this world would look like if we were all given the “gift” of ALS, knowing our time was limited and understanding it with such clarity as to not waste our time on the what ifs, the if onlys, the coulda, woulda, shouldas! Just imagine!
    Thank you for your writings today and also for your listening yesterday. Blessings, Tanya

  2. Your experience is unique, but the diagnosis that is giving you such refined clarity can also happen in other ways. I know you remember the grief I went through when I lost my life partner. One of the gifts of that grief was a new kind of clarity and intensity. I especially identified with what you said about this being no time for games. I’d like to think that even if your diagnosis was reversed or even if my loved one was restored we would retain that clarity, but I don’t know……….Thank you for sharing your thoughts this way and letting us share ours.

    • Carol, I so remember when your beloved was lost. All of us admire your strength and the way that you have learned to zero in on what is important in life. Thank you for sharing your thoughts, and blessings on you every day.

  3. When you write that your new sense of urgency makes you give new meaning to “places to go, things to do, people to see,” it reminds me of my microcosm of urgency when I’m in the car and behind a slow driver and say out loud, (my passengers looking at me strangely), “You have no sense of urgency, no idea of my schedule!” You invite me to put my urgency to good effect in the larger sense!
    And thank you for your sharing your joy/grief. I will learn much from you.

  4. Hi Bruce, I hope you don’t mind Dad shared your Blog with me. Dad is truly devastated by the news. I think he sees you like his own son. He loves you that much, Bruce. As for Jim and I, we are both passing white light and prayers your way. I hope with all the love and support you will find from your friends and family around the world, you will feel lifted up even during your darkest days. I also wanted to share with you that in a VERY small way, by comparison, I too experienced a taste of The Gift you are describing. My Gift was the complete loss of my hearing in my left ear, for a short time. One minute it was there, and the next it was totally gone. I was given a 50/50 chance of it returning at all. Thanks be to God, two weeks later, my hearing completely returned. What changed permanently was my outlook on life. Everything blessing in my life was magnified 100 fold, while my hearing was gone. Once I got passed the shock of it, I became more appreciative of everything and everyone. It was truly a gift. There is more to this story, but I will share that with you another day via email if you are interested. For now Bruce, Jim and I both send you what we call “a strength hug” through cyber space this evening. Love and peace J and L

    • Leah, it is so good to hear from you, and of course I am thinking of how to have a cane race with Jim (an old running buddy from long ago). Your hearing issue gives you insight, and the fact that you are able to hold onto the lessons of loss, even when you found restoration, is beyond belief. Thanks so much for posting such a personal event, and thank you for the white light and prayers. I take those everyday.

  5. You know, in this latest post, I saw one phrase that jumped out at me. I had to think. My band pays a song about this. It isn’t about ALS, it is about the man who wrote the song. It is about John Newton, who was a slave trader who realized what he had done. He found that Grace from the Universe. (I call God this because I think God is too big to have one name.) You wrote about Amazing Grace. Leading up that though you discussed how you were when you were younger.
    I remember you then; I fear that I made a life judgment upon you from the Bruce that you were then. I do not know this person anymore. I read your diary and there is one thing I see that I have always admired. Your serene spirit. You are so much more than I could ever hope to be. Although you have this dis ease, you find good in it. I think maybe the worst option about it is that you will die, but really; won’t we all sooner or later? Is there one of us who is immortal? No. There is not even one.
    We will all die, it is the reality of life. If we all embraced that as you have, then we would truly be alive! Even if it is only for a short while.
    You are dancing like no one is watching and the rest of us are walking around looking at the ground. You sir, are more alive now, than any of us are! It is truly beautiful to watch. I will relish in the moment for now, because it is only a moment, and it too shall pass.
    You know what I view as the ultimate affront to the Universe? Each of us has been given this moment. Yet, there are people who would try to dominate others’ moments. There are those who kill in the name of God. Somewhere in my heart I hear a faint voice crying. It is soft. It says: “That is not what I wanted you to do with your gift…” It makes me sad because what I have learned is that most of us don’t even consider living until we are faced with the prospect of death. I include myself in this category.
    Honestly, unless I can be offered a future like our Grandparents; the ever beautiful Glen and Eunice, I don’t think I want to live to be old and crippled. Why would I want to live with pain and dis comfort? Sorry, but I guess maybe I am a coward in that department. That is forever away for me anyway. I will live to be old, fat and sassy. Won’t I?
    John Newton realized that the finest of his slaves that he kidnapped from Africa would rather throw themselves overboard than to be enslaved. He heard their grief and somehow his heart was softened. He changed his life and began to live. He had found that Amazing Grace. He lived the rest of his life with that knowledge. I think you have found it too. I’m jealous, but not too much. I will leave you with this link to our song. Yea, that’s your baby brother on the bagpipes.
    I love you Brother,

  6. It’s so good to hear your voice again. Yet while it is your voice, it really is a different – it still has your passion (you have never needed the strong emotions of ALS to get there), but of course it is now filled with a reflection on every day that I’m not sure I’ve heard from you before. You have always been an achiever – always looking for the next challenge, for the next hurdle to not only get over but SOAR over. ALS is a challenge, no doubt – more than you ever wanted, I’m sure. But now this challenge seems to be changing your focus – “from product to process”, as they would say in the art world. It seems as though you are doing the only thing possible at this time, which is wrapping your arms around your newest challenge and embracing it, knowing the ultimate stopping point but recognizing the potential of the journey. Scary, no doubt, but what a showing of strength. You have always been such a gift to me, Bruce. Is it possible that your ALS will – through your words, reflections, and insights – be a gift as well? I would not have imagined. I look forward to your next installment.


  7. Thanks, Bruce, for sharing yourself with all of us in this way. I am reminded as I read this entry that I have been trying for some time to try to remember to ‘be in the moment’—to really feel/see/sense/understand what is happening right now. After all, each of us needs to live moment to moment. Why not make it the best moment it can be? I think that it is a very spiritual way to try to live, but it’s certainly not easy. It’s so much easier to be looking ahead—planning, dreaming, etc.— than to just take the present moment and savor it. I am thankful that you can see this new way of looking at your life as a gift and that you want to share the gift with all of us.

  8. Bruce, I couldn’t help but hear the voice of the youthful Bruce from a coffeehouse discussing the true importance of life and what is really important. perhaps you will see soem of this in yourself as well.
    Jessye Norman has a voice that can almost change the world. I hope she is changing yours.
    You missed one gift of your dis-ease. You have given us all the gift of seeing life through your eyes.

  9. Maybe you should start a new career…as a preacher!! These posts are wonderful. Thank you so much for them, and for you.

  10. I thought as I heard my boss preach Sunday that I wish you were hearing it. There was much about God’s surprises and how wonder-full they can be, even when painful. Then you gave us all this intimate illustration. Once again, thanks.

  11. As I have been in Tulsa for awhile, I have played with Christ UMC’s handbell choir & sang with their chancel choir. I should be home by April, but I have practiced with them on their work for Good Friday, “Tapestry of Darkness”. Beautiful peices with wonderful harmony & melody. One of the song’s lyrics really hit home with me on your blog topics: “… if they could see the finished tapestry, but just like us they only see in shadows. But there would be no shadow if it were not for the light, there would be no morning if it were not for the night. So we celebrate the shadow, it serves as a reminder that although the light is hidden, it still shines…”

  12. Thank you for your inspiring message. Your Normandale friends are on the Bruce/Ev team with love and a great desire to support you both.

  13. B.H.,

    I know your name is really Bruce, and that the “H” stands for something unusual, but I keep forgetting what. I think I’ll just keep calling you BH because I grew up thinking guys were supposed to use John Wayne as a role model; also cuz we once co-wrote something that constantly referred to you as “Dr. K,” and somehow it seemed to appropriate…..

    Now about this gift thing.

    Seems like your ALS is a kind of “Finiteness” call; not just for you but for all of us. We’re all finite and basically running around scared with our heads in the sand [figured you’d appreciate the mixed metaphor; a failproof sign that it’s really me… :)]. I know that your diagnosis has caused me to think about how I spend time – and stay aware to it – differently. I also know others who’ve experienced the same effect.

    I guess you are our collective Joy/Grief symbol. Selfishly, I hope you continue in that mode for a long time.

  14. You are amazing, dear Bruce, as is dear Evie, and I give thanks to you both, for your gift to me during this time – to take time to reflect on my days in a more intentional way, both in the “big” things as well as the “little” things. I have lived a long life – at least most of you half my 85 years or less would say that – but I have so much more to learn and so much more to gain from all those whose lives touch mine – my dear John, my dear children, my gifted grandchildren, my many friends and the two of you who became family while living abroad as well as so many others who became a part of my international family during our years in Libya and Norway. The good and sometimes not-so-good days during those years gave us a special bond. The not-so-good days, as I look back, became genuine gifts as well. It is good for me to take a bit of time to think back and to reflect on the gifts of the past, but today I give thanks to the two of you for your present gift to me.

  15. Dear Bruce: When I read your blog on “The Gift” several days ago, I was really touched. That sounds like an old cliché, but I can’t think of a better word. My very first reaction was “My what a wordsmith this guy is.” And being a wordsmith is helping him now and is going to help him in the future days. One of the measures of value in what one person says, is what it conjures up in the mind of another. We old folks are constantly thinking about how flippant the youth are of today in their lack of valuing the experiences that are passing through them at a given moment. I have watched the students you have taught and thought how I wished they understood how lucky they are, having you as their teacher. They should treasure these moments much more highly. Maybe they will receive this gift some way, some day.

    Your blog on treasuring moments and being live to absolutely everything that comes your way was said so eloquently. And one of the things it brought to my mind was a quote by Mary Caroline Richards in her book, Centering. Discussing this very thing, she said, “It takes a heap of resolve not to go
    to sleep in the middle of the show.” Yes, Bruce, learning to live the life of
    Grief/Joy is truly a gift.

    I’m going to allow myself one little remembrance of joy with you and Ev: an evening supper in a Felucca on the Nile. We must have treasured the moment because it is to vivid in my mind. Thank you, dear friend, for
    joyful moments in the past and thank you for making these moments more vivid in the present in the midst of our collective grief.

    • Bill,

      You were my teacher. I learned how to approach music in a way that didn’t squeeze the life out of it. We both knew that too many believed that music needed to be captured and smothered so it could be performed. Too much of that in life don’t you think? And guess what–that approach to music–to set it free on its own path– is exactly what Joy and Grief is all about. Thanks for the really kind words and for being persistent.

  16. Bruce: Your comment on smothering music immediately brought to mind the story of the Biology class that wanted to study what makes a frog be so alive. So they cut it open to see, but, alas, it wasn’t alive any more. We often seem to make that mistake with music. One summer son, Ray, and I went to an Old Time Music Camp. Ray had a famous banjo teacher who looked at him one day and said, “ You read music. That is a terrible disadvantage.” For those of us who are deeply into the intelligentsia of
    music, that was just laughable. But after I thought about it a while, it became clearer as to what he meant. The Old Time music folk had a delightful string of happy moments with their music, often playing nearly all night. Back home at the University everyone was so grim, trying to get everything “right.”
    This shadowed another quote from Mary Caroline Richards who received her PhD from the University of Chicago. She said she was not happy there because there was “All this solemnity over a few facts.” Ah, there we are: All this solemnity over a few right notes. I wished that I had learned more music by ear, and could have taught it more that way, so as to better help not to smother it. You, dear friend, have a very keen perception as to what makes music alive. It has been and still is such a treasure to have had you and Ev, who also makes beautiful music, in our lives.
    Ruth and I are truly grateful. A Joy in our Grief

  17. B.H. (and yes, I remember what the H stands for!)

    I was one of those Franklin kids you took to Ball State to perform. It was the first time I had ever been exposed to opera, much less SINGING it. You broadened this country girl’s world view wider than anyone ever has. I could write paragraphs about how you have affected my life, but for now I will share things here and there. I cannot hear Handel’s Messiah or Vivaldi’s Gloria or music from Godspell or Pippin without remembering our time together in that choir room. Remembering that time in my life being your student and knowing now what is happening to your body has caused me to experience my own joy/grief.

    It’s not fair. It’s just not fair.

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