Welcome to the Dis Ease Diary

Dearest Friends,

I am a PALS (a person with ALS), and I’m afraid to commit to blogging.  However, to try to keep up with communication with so many dear loved ones, both past and present, has become a challenge.  And…I REFUSE to go to a Caring-Bridge Site.  That can come a lot later, I hope.  When I switch over to that type of site, then you can take that as a signal that the end is near, either of Bruce or the world as you know it, HA!

So I’ve decided to try blogging.  It seems to me that it might be a good way for all of us to stay in touch and in many cases, to meet each other.  Some of you will know me from a musical past or present while others will know me from an international past.  Still others will know me from a present that is so grounded in Minneapolis, MN, the University of St. Thomas and 15 years of Stateside experiences that have become inexorably intertwined with one another.  Anyway, what I am hoping is that as you log into this blog and read (and hopefully leave a comment or two for me or others to see), you will also begin to meet each other.  My friends and family are incredible, raucous, messy and just wonderful human beings! It is really time for you all to meet.

What I am hoping is that this can become a dialogue.  I’ve called it the Dis Ease Diary.  While I think that my diagnosis of ALS really focuses me on how we do health, sickness, ease and dis ease in this country (and really, the Western world in general),  I also think it is bigger than just a commentary on health.  As we consider those things that seem at the time to be interruptions to our lives (dissing the ease so to speak), many will have nothing to do with ALS.  Instead, I see possibilities of this blog helping to connect some of the dots of what it might mean to be human in the early 21st Century.  Or we might just get in a few laughs and cries.

So take this in a lot of ways.  We can keep up with each other, we can talk about life, the Cubs or fashion, or maybe we can see if there is a little room for human consideration of being human.  If you don’t want to share your comment with the D E Diary, then feel free to email me.  The idea here is that, even as the motor neurons come unconnected, the love, life, light and joy of all of us, even in the darkest times, becomes unified.  And I admit this is very selfish, for I find that in the notes, letters, cards, and just chance meetings, since my diagnosis, I am strengthened and energized for the days ahead.  That is what love can do for us.

Yours in ALS,

Bruce

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21 thoughts on “Welcome to the Dis Ease Diary

  1. Your light is shining Bruce! This is a great idea I look forward to your wisdom and the wisdom of your friends.

  2. I had a family member who was a PALS…and she showed me with her life such strenght I never knew she had…my Mother was such a gentle quite person very loving and accepting. God Blessed me with this wonderful person. Bruce I want you to know that I think of you and your family and pray for a cure…

  3. Bruce,

    I commend your courage and willingness to write about your journey. I believe in the power of healing and in miracles. I also believe in the effective balance of mind over medicine and of combined healing techniques between East and West. Love is power that will steer you and keep you strong. Please know we are here for you and Ev.
    I still think of our brief times hearing you direct the choir at church… they continue to resonate with me to this day.

    Love and light,
    Beth Nelson

  4. How long have you known, Bruce? You sound like this is a recent development. Your journey ahead will no doubt involve struggle. Take strength in knowing your many friends and acquaintances will be praying for you and for a cure. Are there any studies you can join? Hugs and more hugs from me.

  5. When I asked my friend Lenora why bad things (like ALS) happen to good people (like you), she told me: “I think it’s because God knows that good people will handle it with more grace.”
    Her opinion has stuck with me, and everyday I endeavor to show as much grace as you have, Bruce.

  6. My dad had a very slow version of ALS that took many, many years. It was difficult for our family as dad would not discuss it or deal with it. He just got more and more quiet until he almost disappeared! Talk about it. About those Cubs. One of the best summers of my life while in seminary was a reading course in the rare books library (the Newberry). I got to wear white gloves and read all this wonderful stuff, and then. Oh fapturous joy, I would take my press pass given to me by a house mate from Northwestern and go to Wrigley Field and stop at the press box to pick up lunch. Then I would find Tom who took films of opposing pichers from the mezzinine and we would sit back, looking at that green field with the vines on the outfield wall ans watch. The prettiest think was to watch Ernie Banks from deep short throw to first base. It was ballet and music and a cannon all in one. So smooth. Saw my Milwaukee Braves there too, Spahn and Burdett and we’ll win it yet. Thought there was something special–The Cubs.

    Love ya, Larry

  7. Its funny. I think of you always now and how your life must be changing. We all tend to think of ourselves first. That is as it should be. However, I have discovered in your diagnosis many things:
    How deep is your heart, how much weight I can carry, how much sorrow weighs, how sorrow is universal. I have started to realize how much sorrow there is in the world and in every life.
    I dreamed that I stood before God and asked him why this had to happen to you. He said nothing. He smiled kindly. I am still thinking about that.
    I love you deeply my brother.

  8. I have to admit that while I love you brother, I am going to take a more selfish angle on this first post. I hope all will forgive.
    When I first learned of your diagnosis I was so wrapped up in my own crap that I did not even realize the gravity of the situation. Dad called me while Shawn and I were walking through Wal-Mart enjoying a bit of one on one time. Dad was so distraught over the phone and me in my thickness was thinking you had another knee injury and I was was thinking; “he’ll be alright.” It was not until my wife, the nurse explained to me what ALS was that I got a clue.
    Maybe even now I sometimes think that you will be alright because that’s how it has always been for this family and catastrophe has always struck next door. Part of the reason for the loose knitted fabric of this family is because it has never been tried. We have always spoke bravely but we have never had to be brave.
    Now, I have to admit, I am shook to the core. I become rather paranoid when I feel a twinge or something that just does not feel right. I think sometimes that a curse has been placed upon our door. Even Rhi being diagnosed with diabetes didn’t upset me like this has.
    You see Bruce, this isn’t the deal! You and Kris and I are immortal, didn’t you know that? I never have considered the possibility that one of us could die. We have always had forever to fix our differences and learn to be brothers. C’mon man! You’re not playing by the rules dude! You aren’t supposed to have a life threatening illness! That isn’t fair! We are still young! Didn’t you get the memo on that?
    Well, it comes down to this bro; I am you’re baby brother. I have always looked up to you and I always will. I am feeling a little cheated by not ever having the conversations that we should have had. Oh! we will have them now! You aren’t getting away that easy sir! You will know who you are in my life and my children will know their uncles, and your children will know their uncles too.
    I love you brother, I love everything you have always stood for and you have always been one of my heroes. I love your beautiful sons and your adoring wife. While this dis ease has struck, you are still rich my friend and you will die a rich man.
    Your baby brother,
    Andy

    • I am continually impressed with your courage, good (well mostly funny) humor, and the significant shift from what we can no longer do for various reasons to what we can continue to do and how we make accommodations in our lives.

      I have noticed a stronger focus on what we can and need to do rather than constantly perseverating on what we can not do and why we can not do things.
      “Now I become myself. It’s taken time, many year and places; I have been dissolved and shaken, worn other people’s faces…” May Sarton

      We continue to co-create.
      Doug

  9. Bruce,

    You have been at the top of my “to-do list” for the last week. CALL BRUCE. And as you know, I have a genuine talent for procrastination – especially in my current state of semi-retirement. Anyway I didn’t call and here we are. What a great idea! On Wednesday we had to make a a hurried trip over to the West Coast of Florida and on the way back yesterday, as we were crossing Alligator Alley, I was listening to NPR and “All Things Considered”. The show was dealing with serious rare illnesses and ways in which people are contacting others to make connections. Websites and blogs were featured. Today I open the email and here we are – sort of predestined.

    As to Larry Nielsen – you made my day. Banks, Burdette and Spahn – talk about a holy trinity. I recently attended an old timers game in Ft. Lauderdale. How about Minnie Minoso as a name to remember – not Cubs or Braves, but White Sox if my feeble brain recalls correctly. Minnie wasn’t stealing bases or even playing for that matter – he was the third base coach. But it was spine tingling to see the name.

    I digress. Bruce, you introduced this uncultured hayseed to single malt and the beauty of the Messiah – not at the same time, but the same place. Hopefully, there will be an opportunity to share more of both. Doctors may frown upon the medical wisdom of the Glenfidich approach to treating ALS, but there has to be someone who would consider such a clinical trial. As to the Messiah – a rousing standing rendition of the Haleluia (sp?) chorus would certainly release some valuable endorphens.

    Tomorrow is grandson Sebastian’s third b-day and he awaits our chariot to pick him up from pre school. Dave and Joy Haack arrive tomorrow for a few days visit.

    As long as the Cubs can be mentioned – anyone else out there who will be rooting for the Tarheels to beat Duke tomorrow night?

    All the best – thanks for setting this up.

    Dave

  10. Bruce,

    Many, many years since we shared a common space. As I recall you were probably in the early teen section of life, maybe 15 and I was your pastor, actually youth pastor at Wabash First UMC.
    I have always respected, well maybe admired, your perspectives on life, love and freedom. Now it appears you are on path that does not appear, at least on the surface, to have a plethora of options. Throughout history, people have traveled this path, discovering along the way points of interest, new visions and the ability to see through the illusions called life. This too,you will discover, is a journey that when finished will have you back at the point of beginning. Not sure what you are reading these days, but a book of interest….Spontaneous Evolution… might be worth a read. Take care my brother, Peace, Joy, Love and Laughter
    Pastor Bob

  11. Bruce,
    After we had lunch the other day with your Choir Male Support Group, I realized how helpless I felt as you move through this illness. Having lunch seemed too painless to be really helpful. When you said that it was helpful, I felt like you had given me a way to be creatively involved in the dying process – mine, yours and all those I love. The blog will keep me up to date about your experience in between lunches. Thanks,
    Jack

  12. Having communion with you yesterday was a wonderful experience. I saw you while conducting worship. Your intensity is still there but wrapped in a blanket of compassion. I hope there is an early summer (it is about as possible as the Red Sox and Cubs playing in the world series) so that you can bask in the warmth of the sun and move about with greater ease. I never used to fear ice–I worked two winters and one summer first harvesting ice and then icing refridgerator cars all summer for the NP railroad–but I do now. If I bang my head its off to the ER to check for a bleed. Getting old or sick or both is not for the weak or for the weak of heart. May your strength of heart and soul remain strong–those things will not be crushed.

    Love you, dear one.

    Larry

  13. PS to Dave Randall: Put Hammering Hank Aaron on your dream team as well. A swing that was liquid, devastating and effective attached to a gentleman.

    Larry

    • Karry,

      Thanks for Hank’s mention. Too few of those gentlemen left in sports and none with a swing like Hank.

      Dave

  14. OK Bruce, here is what I know at the moment, I can’t read your words and those of your friends and family without crying. I also know, from reading your last entry that they are tears of both joy and grief. Lastly, I know that you need to put the little thought pieces you are writing into a book for MANY people to learn from, these are words of wisdom that need to be broadly shared. Lastly, I know that I love you.
    Terri

  15. Bruce, I’ve always admired you in the way you look at ALS. You are an inspiration to everyone, not just people with ALS but everyone. Take care Margaret

  16. Hello Bruce — this is my first comment although I have been following you and your journey since I heard you on MPR last January. Thank you for helping me put perspective on my own travails. You have helped me more than I can say.

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