Time Traveler 2.0

This weekend, Ev and I watched the movie About Time. The plot is built around the idea that men in a certain family can travel back in time to fix things that they may have bollixed up the first time round. This premise is used to good advantage for the sake of comedy and poignancy, offering humor, a few tears, and mostly enjoyment. It isn’t the greatest movie I have ever seen, but we had fun watching it. And there was another reason that I enjoyed the movie besides fun with Ev. You see, I am intimately acquainted with time travel, for time travel is one of the great gifts given by dis ease.

It is a gift not to be taken lightly.

Imagine my surprise in the first year of my rebirth in ALS to discover that I could travel through time. Up until the very moment of my diagnosis, I’d always thought that time travel was impossible, that time was sequential and had to be experienced minute to minute, hour to hour, day to day. Einstein notwithstanding, it was my deeply held, almost sacred belief that once you have left, you can never go back, an entire life built on the idea that going back was impossible. And then came my diagnosis, and I realized that at some point not only could I go back, but that I would.

Since that time, I have spent a great number of hours traveling in time. You might call it remembering, but it is more intense than memory. Here is how it works. I close my eyes, think of something that brings me back to the desired time – a smell or sight, a sound or feeling for example – and then with a flutter of breath and eyes turned inward toward the space between wakefulness and twilight, I am back, reliving the desired experience as if it was happening for the first time. Only this time, because I know what is coming, I am able to pay better attention to things I might have missed. For example, in the births of my two sons, I had missed vital details, small but significant. When David was born, it was summer, with the sun streaming through the window of the hospital room, tendrils of comfort and grace in spite of our exhaustion and Ev’s pain. When I travel to that moment, I feel sunlight’s warmth on my back as Ev dozes in and out of worried sleep. We were so inexperienced, but I reassure her, I know how it ends and everything will be wonderful. When Jon was born, we walked up and down our Stavanger, Norway street, oblivious to the cold and Christmas day’s weak sunlight. I drink in the moment that as a contraction squeezes through my Ev, she puts her hands just so around my neck waiting for the pain to pass. There is nothing like the flutter and strength of her hand, and her eye catches mine with mutual strength and reassurance. I love revisiting the days our sons were born. The anticipation is delicious, the potential unfathomable, and their births are a joyful energy released into the universe over and over again.

You cannot tell me that this is not time travel.

There are significant consequences if you do not travel in time. Suppose you are duped into thinking that you can never go back, then you believe that life should be constructed with no regrets, no sorrow for what you might have done, no question about the direction you have taken. The psyche is constructed to learn and grow from mistakes, and if you see no future application of past regret, then you deny the regrets that have made you. You state to others that your life is exactly as it should be, and that all past experiences were necessary for the life that is. You wave a flag that says you regret nothing. You repress any sorrow for what you might have done but didn’t. You feel an overwhelming need to believe that you cannot go back, because if you acknowledge that you could, then regret and sorrow and questioning could not be so easily disposed.

I know this firsthand.

For such a long time in my life, before my rebirth in ALS, I tried to hold a “No regrets” philosophy for living. As seductive as the lie of curing disease, no regrets is a lie of arrogance and limitation. Since my rebirth, I have taken untold opportunities to time travel, to go back, sometimes just to experience it all again, and other times to seek what I might have done, what I should have done, what I wished I would’ve done. This has resulted in a sense of the present not defined by day or date or time, but by place – the grounding of my life energy beyond my feet and into the earth, above my head and into the heavens. Of course, I cannot time travel to what I have not yet experienced. I know that I cannot look into the future except to experience its implications from my past.

I have been granted the grace of regret and growth.

My greatest regret since my diagnosis was the diagnosis event itself. I allowed a situation to take place that was harmful to the people I love the most. It took me three years to figure out the post traumatic stress of this event, but I did, and once I did I knew I had to go back. This would be a different type of time travel, one that existed in the present and not in the energy between wakefulness and twilight. It would require every ounce of leadership skill, educative energy, and dis ease learning that I could muster. It would require that I go back with no expectations of the neurologist who rendered my diagnosis, and total expectation of myself who received.

So I made an appointment and met with the neurologist.

I met with him to make the case in every way I knew for a more humane, a more sensitive, a more holy and human act than what I had experienced. I met with him to say what I regretted not saying, that how one reads the script might be more important than the script. I met with him to help him see that great privilege granted in a life-changing moment requires far more creativity and imagination than is available in a strict yet blind reading of a perceived protocol. I met with him, and the result was predictable – he was defensive, and I pressed the advantages of ALS. Yet in the end, I hope that by meeting with him, he will hear my voice the next time and the next that the holy experience of diagnosis is presented. And I know that by meeting with him, I am better now.

The circle for me has been closed, and time travel even in the present has realized its potential.

Clearly I am not a movie critic, but I recommend About Time, especially if you can watch it with someone whose company you enjoy. I am not sure if I’m qualified as a life critic except I know that three years of ALS reveal challenges and gifts totally unlooked for. Time travel can heal regret and sorrow and questions of purpose or decision. It will not cure you of the first time wounds, but it will offer you healing the next time around, even if the first time was really bollixed up. You might experience one of the most blessed and graced periods of your life. You might learn to time travel even in the present.

And if you are really lucky, you can stroll a street, feel sunlight, and know unfathomable energy released into the universe over and over and over again.

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18 thoughts on “Time Traveler 2.0

  1. Thank you for this posting! I have recently been having numerous vivid dreams and comforting thoughts seemingly out of nowhere, and your blog counts as one of those “nowheres”. Your encouragement to open up to the possibilities is appreciated.
    Diagnosed, June 2013.
    Pete

  2. Lots of times when I can’t sleep at night I go back in time. But now I have a name for it, “Time Travel”.. There are so many things that I wish I could change, but, I guess we just try to make sure we don’t make the same mistakes in the future and hold on to the good times. Bless you, Bruce, for sharing. Don

  3. I love the theme of time travel. Louis, Lea and I saw the movie and enjoyed it as well. Thank you for adding another dimension to the experience. Thanks to you, I can do some “traveling” of my own and what a wonderful experience!

    Ea

  4. Having read your previous telling of this tragic incident, I am so glad you arranged this visit. There’s a lot written on this topic of lack of appropriate empathy in the medical profession. In education, as you know, he’d be signed up for some needed sensitivity training.

    For many doctors it may be a defense mechanism that keeps them from confronting their own mortality. Or, more simply, not knowing how to love enough to say you’re sorry.

    No matter the reaction you got, knowing you as I do and the way you couch your thoughts, I’m sure you made an impact on him. If not, one doctor to another, you did him no harm. Perhaps, some good.

    Such a gift you gave him to take the time and the energy to make a personal visit. Gifts need not be acknowledge to be gifts.

    Thanks so much for sharing this.

    Tom

  5. Bruce, your travels remind me of one of my favorite books, The Diving Bell and the Butterfly (1997). Jean-Dominique Bauby who was paralyzed at age 44 by a stroke except for the ability to move his left eye, dictated the book using his left eye. As with your blog, I found this book uplifting as it talks about the depths of the human spirit and connections to those we love. From the book review,” By turns wistful, mischievous, angry, and witty, Bauby bears witness to his determination to live as fully in his mind as he had been able to do in his body. He explains the joy, and deep sadness, of seeing his children and of hearing his aged father’s voice on the phone. In magical sequences, he imagines traveling to other places and times and of lying next to the woman he loves. Fed only intravenously, he imagines preparing and tasting the full flavor of delectable dishes. Again and again he returns to an ‘inexhaustible reservoir of sensations,’keeping in touch with himself and the life around him.” Thanks for the insights you share! You and Ev are in my thoughts and prayers. Miriam

  6. Dr. Kramer,

    Thank you for visiting with your neurologist. That was no doubt a powerful conversation and so necessary. I think of you and your family often and will keep you in my prayers.

    Your description of “time travel” is compelling. I’m going to practice time travel each day.

    Love and Prayers to you and your family.

    Barb Mollberg

  7. Ahh, so that’s what it’s called. When I’m stressed or can’t sleep, I float just over the edge of the reef at Sharm. And it’s really there for me. Now I’ll have to try some other times, too.

    And thank you for going back to that neurologist. If just a few patients get a slightly better version of the presentation of a diagnosis, they and he will be better for it – and you can release this 3-year burden. What a gift to all of them!

    Still loving you from way down here in New Orleans!

  8. I wondered if I should leave a comment, really I wondered if I have a right to leave a comment, but I then decided to comment on the part of the event itself of your diagnose I totally agree that when looking back we believe that we should have been given the news different! But on the other hand we had to go through the process of realizing what our dis ease (as you put it) means. Could the diagnose have been given different ? Yes but do not forget It made us in the person we are now…..

    • Lucinda, thank you for your kind thoughts. I know that for me, the diagnosis event did not make me the person that I am. Rather, it focused me on the person I can become. From your posting, it seems that you are a sister in ALS. Thank you for rolling with me and please know that I roll with you.

  9. Thank you Bruce for your reply. I was diagnosed in 2009 with PLS ( Primary Lateral Sclerosis) . I decided this year to write my thoughts down in my blog I must say it has a positive effect on me. Thank you for sharing your thoughts.

  10. Dear Bruce:

    Susie and I have been reading your blog since we heard about it last summer. I surely look back and remember that day when the elevator broke down and I found you and Ev in the lobby entry waiting for the fire department. It was wonderful that it was available for you to get back to your apartment and great that Roger would allow you to use his chair. As a physician, your experience with your neurologist was the type of medical care that gives modern medicine a bad name. When I read about it, I wanted to call you and get his name and confront him. I am so happy that you did. After reading for about one hour of your blogs today, I sent this email to my wife.

    “I wanted to go back and read Bruce Kramer’s blog about his life with ALS. It is so overwhelming, not sure if that is the right word. I have had tears in my eyes since I started reading it again. I can’t remember when we first read it but I went back to September of last year and maybe sometime later I will go back further. I want to see him, tell him how much he has taught me about the end of life and just spend time with such a seemingly great teacher. I would like to write to him but I am not sure what I would say. I am so sorry that I didn’t take the time to know him better.”

    Love,

    Bob Diamond

  11. Bruce and Ev, your strength in the present for what is to be the future is amazing! Thank you for sharing your experience. I was fortunate to see you both in Rochester when you shared at our Civic Theatre. You are both wonderful examples of acceptance and controlling the pieces, actions and words that can be controlled in the situation.
    God Bless, Lori Odegard

  12. How true how a diagnosis process, and the aftermath, becomes a rebirth if we are lucky enough to be aware of it. I too time travel to before, during, since to soak in the nuance that I was too blind or traumatized to experience in the moment. Perhaps this notion of time is not as linear as we have been taught to believe. Thank you for your words, as mine are still forming.

  13. I have the minor misfortune of being 1300 miles from home after a fall that broke my leg requiring orthopedic surgery. 5 weeks later I am in a rehab facility still unable to put weight on my injured limb. I have learned many things about myself and about being a patient. It was good of you to go back to the doctor to help him be a better doctor to his patients. I ask my caregivers if they have ever broken a bone (the pain was very awful) and explained that the pain and anxiety about the pain can make even small delays in transfers or wheelchair adjustments quite uncomfortable. I ask my Physical Therapists not to make jokes about causing their patients pain,and I ask them what kind of patients they would be if they were in need of therapy. I hope that I can help them be better caregivers. Thank you for sharing your journey with us.

  14. Dear Bruce,

    It took such extraordinary courage for you to go back to the neurologist who treated you so callously. I am reminded of the question posed to you by an audience member at our event at the Rochester Civic Theatre last April, in effect, “What would you say to the physician who treated you so badly.” You weren’t ready at that time to revisit him, and I’m so glad you reached this point. so that you now have, in your own words, “closure.” I think of you so often with admiration, warmth and caring. You continue to inspire me.

    Take care,

    Carolyn Piepho

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