The Elephant 2.0

I live in a condo where every available space is maximized. When your life is framed by dis ease, you need lots of area to turn around, to fall and get up, to receive uninvited guests and invited love. When your life is framed by dis ease, unless you consciously take charge of the chaos, there are spirits climbing on the walls, unseen by all except you, the floor is a constant jumble – uneven and rolling like the hills of southern Indiana, yet only perceptible to you. When your life is framed by dis ease, the decisions about what you can handle, what you can take, what adds meaning and what subtracts life force take on significance that makes the day to day existence of ALS seem like a vacation. Such decisions are elephants in the room, invisible and waiting for someone to grant them permission to become visible, to acknowledge their presence, to speak their truths no matter how painful. Elephants almost always appear when suffering is present, and I am to blame for the elephants I can see. By not blogging for the past four months, there are so many elephants that have wheedled and cajoled, quietly appeared or loudly announced their presence, that they have taken over every room, every seat, every open space, and I cannot help but be overwhelmed by their sheer number.

Not since my diagnosis have I gone this long without blogging.

I have been very busy writing, and our book, We Know How This Ends, is in its final stages before production. But I have to admit that in paying attention to the larger picture painted by writing a book, submitting, resubmitting, and resubmitting again drafts for editing, my viewpoint has out of necessity been at the 30,000 foot level. From up here, you can see all of the elephants, but the details are not specific. It isn’t a bad place to hang out, but it does not lend itself well to the daily processing that dis ease demands, especially if you are trying to stay in that space between grief and fear, pleasant memory and the anguished unknown, past meaning and future possibility. And, in spite of the incredible support of my co-author Cathy Wurzer, the many small yet largely significant physical changes I have gone through in the past four months are piled up on my lack of interpretation, leaving me much more susceptible to tortured feelings and harmful vulnerability. Really, you think I write to you to keep you informed? I am much more selfish than that.

I need the therapy of blogging; there are elephants in the room.

In early July, I began using BiPAP for breathing support. BiPAP is a more active version of the CPAP that many people use for sleep apnea. I must have been starved for air, because within 10 days I was using BiPAP almost 24/ 7. There are two ways to use this machine. It has its own stand and a humidity element that keeps the air warm and moist as I breathe. This is my preferred manner for using BiPAP. You can imagine that if you had wind blowing up your nostrils, your poor little nose would get sore both outside and in. The humidity helps but isn’t quite enough. My BiPAP machine is also on batteries that can be tied into my wheelchair. This allows me to make transfers or to leave the condo with the BiPAP machine functioning sans humidity. It is OK for a little while, and it keeps me from having breathing events when I transfer from one place to another.

With a long BiPAP hose hanging from my face, I joke with my friends that I am the proverbial elephant in the room, and unbeknownst to them, I am.

The air hose that comes off the machine enters through nasal pillows held by a head strap against my nose. The advantage of using the nasal pillow interface is that I can talk. Other ALS friends of mine that use a full face mask cannot talk with their masks on. But thankfully for me, and probably not so thankfully for my friends, I am able to speak while wearing my BiPAP mask. Unfortunately, BiPAP makes me sound like I have a terrible head cold. Words like “nine” come out as “died,”and “mom” comes out as “Bob.”  I tell my friends that just as I need to concentrate on my pronunciation, they have to put on their BiPAP ears so that we can communicate with some semblance of understanding.

Like any good elephant, I ask people who have not seen me on BiPAP before, if they think it makes me look fat.

At first, I tried to use the BiPAP with my diaphragmatic pacing system. Unfortunately, the DPS is slightly out of sync with the BiPAP. Thus, I was required to try to consciously synchronize the kick of the DPS with the breath of the BiPAP, and for a while, I was able to do it. However, over time my strength to control the synchronization has waned and the DPS has become quite painful, so I no longer use it. I have to admit that I feel a little bit guilty about that. But then I remind myself that in reality, the DPS for ALS is a clinical trial, and until we gain a great deal more evidence that can be meta-analyzed, we just will not have the requisite knowledge for best use and application. I have learned the hard way that one of the great challenges for treating ALS is that everything is on the front lines of knowledge. Just when we think we have figured something out, new knowledge emerges that ironically enhances what we already know while at the same time putting us back to square one in what we understand.

If you listen carefully, you can hear another elephant trumpeting its song in my dis ease life.

The minute I remove the BiPAP mask, my voice becomes so soft that it is barely discernible. The amount of air that I can move through my system without mechanical support is miniscule at best. I am literally out of breath without this machine. Not having the strength to synchronize the DPS and the BiPAP, barely moving any air in and out without support, and other losses are all indicative of dis ease and its handmaiden ALS, especially in terms of where things are in the elegant progression of this remarkable disease. From here on out, life is only too short for me.

So many elephants, so little time.

The greatest elephant in the room is the worry I carry about what happens to my beloved family and my loving friends after I am gone. I know full well that they will keep on keeping on, that their lives will be joyful, and that the sadness that we feel together now will dissipate into a lovely longing for days gone by. But I cannot help but worry. What if all that I have learned and sought to pass on is for naught? What if they forget how to remember my love for them? I know these are small concerns considering all of the adjustments ahead of them. I just want them to deeply know how much I love them and how much my life was bettered by being in their presence. I want them to know how healthy I feel in spite of ALS. I want them to know that because of them, I knew grace.

And in spite of the visual evidence, nose extension and quiet voice, the grace that I feel is the real elephant in the room, gently waiting to take me home.

18 thoughts on “The Elephant 2.0

  1. Thank you Bruce. You bless us with your continued dedication to teaching and your ability to affirm the strength and courage of the human spirit. I have read your blogs with keen interest and deep respect; knowing that you may not even know who I am, I’ve composed messages to you and then lost them in my tears of gratitude. What a gift you have been in my life and the lives of so many others. Kathy Paden (you were on my dissertation committee many years ago)

  2. What we can all learn and apply from your journey is how healthy it is to actually tell people who you are feeling when they ask – or probably even if they don’t, rather than keep it buried inside. Particularly for men, showing one’s emotions can be terrifying, but not doing so is so harmful..

  3. Thank you Bruce. I have missed hearing from you. Each blog helps me stay centered on what is most important in life; those we love and those that love us and sharing in all of the moments we have together.

  4. Dear Bruce,
    Your strength and courage to face this journey never ceases to touch my soul.
    May you find a measure of peace in knowing that you are loved by many whom you have never met.


  5. You never cease to amaze. “What if all that I have learned and sought to pass on is for naught?” How could you think this for even a nanosecond. I, for one will never forget your guidance as my former professor and advisor. Zen and the Art of Motorcycle Maintenance will remain with me forever as will your insight into the world of educational leadership. God Bless You.

  6. Dearest Bruce,
    You mention some worries in your blog. Please let me say that you are clearly an abiding one and your love cannot ever be forgotten. Your love is so large, not even ALS can put a tarnish on it. And it resounds back to you from every rooftop of anyone who’s ever known you. You’re in all our hearts. And that goes on.
    You said recently on the radio that you know the love will go on. And that is what will happen, you have nurtured that so well.. We’ve learned to be more courageous because of you, a new courageous – that is more willing to be with what is in our face, while definitely being clued in that “an alignment of acceptance, gratitude and love” (your words) is totally possible from any vantage point in any moment. That will serve like a trail of bread crumbs for our hearts when they be sorely missing you.
    We’re right here, in heart, with you, Bruce and Ev. Every step of the way, holding you in the love that is ever triumphant.
    Diane Mathew

  7. May leagues of angels lift your worries. May you feel only Love. Thank you for sharing your elephants. My life is bettered by your presence. Big HUGS.

  8. Thanks again for the heart felt words, putting voice to others struggles as well as yours. I have been diagnosed for 1.5 years and symptomatic for some time prior. The anxiety and resulting fear associated with loss ring very true for me. I struggle to live with this disease and not to let it take over who I am. My wife of 30 years and I have always been each other’s sole confidants and this is wonderful and heart breaking at the same time. Thank you again for sharing your journey and giving us all a chance to reflect on our progression as spirit while living with the body we were given.

  9. I am so grateful to have met you across the Teri Tableau.
    My brief, but profound spiritual encounter is forever etched into my psyche.
    Thanks so much,

  10. Dr. Kramer,
    Thank you for this additional blog.
    You are not alone with the elephants.
    Peace, love and comfort for you and your family.
    Barb Mollberg

  11. Dear Bruce. So good getting your blog again. Thank you for again sharing your thoughts and concerns so openly and honestly. May I suggest one thing that you said is bothering you, and that is that your loved ones may in the future somewhat forget your love for them. The body dies die, but love never does, it continues to live on in your loved ones forever and ever and ever. And, you have given your love to so many people, Bruce. Your legacy is secure, I’m sure. Joanie Goehl

  12. Bruce, I had to wait a while to read this one, and that is my “elephant in the room”. Couldn’t read it without crying. Sending love to you and Ev.

  13. Delighted to read your blog again Bruce! I daily marvel at the availability of Nasal Pillows, appreciating their incredible advantages just as you do. Imagine dealing with this a decade or two ago. But it’s this sentence that I have read and re-read, “the grace that I feel is the real elephant in the room”. Divine Reversal: dying we live, the last are first, bad things might be good. You write so very beautifully. Thank you indeed.

  14. I am both smiling and have tears in my eyes as I read this, Bruce. Yes, the one word that I would use to describe you is G R A C E . You are the picture of love, grace and gratitude. There is no anger, no self-pity, no resentment.
    You are a remarkable human being. Few could handle The ‘battle’ with ALS the way you have. You do not let it victimize you or define you in negative terms. That, dear friend, is pure
    G R A C E . ❤

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