What Would You Do?

I think I am one of the lucky ones. I have a great family, a wife that I absolutely adore, kids that are incredibly supportive, each of them with true loves of whom I totally approve and cannot believe how much I love. And their loves have beautiful families that we have come to love, enjoy, and respect. And then there are my own in-laws—they write me, cheer for me, send me little blessings when I’m not looking for them. And I have a brother who is one of the angels walking on earth. Fair and kind, compassionate and honorable, married to a great woman, he is a rock for me—he cusses out ALS when he knows I won’t, and he calls me up just to ask, “Whatcha up to?” I know so many people who look at family as a millstone, but for me, it is an indication of the luck I carry.

Then there is my work. I work in a place that values the power of ideas and expects you to put those ideas into everyday practice, testing them for their efficacy and their ability to make things better. I love the work I do. Every day is an opportunity to create growth and understanding, to build bridges where they have not existed before, to think about the common good and to act upon that. It is a place where the power of humanity is forged on the ideals of faith, where reason is valued, and betterment is possible, if that is what you want to do. How lucky is that?

So ALS is an anomaly for me. Yes, I know that those of you who know different parts of my history could point out some very tough times, rough areas and patches where you knew things were difficult. But my experience of these, as I look back on them with the power of hindsight, is that here were great life lessons, strengthening my core with adaptation and coping and rebuilding learned from the chaos. I have been blessed with resiliency in the face of the hard times, and laughter in the times that were good. ALS is different, because there really is no way out, no grand plan that will just get us through until we have waited out its progressions. This experience is the big one—the one where you know the basic plotline, the ending before you read it, and you carry that knowledge with you no matter what.

So I look at the good times and bad times and realize that it was all leading up to this. It is like playing Watson the big IBM Supercomputer, in a chess game that you could map out with multiple scenarios and schemes, only to know that each path leads you to being checkmated. While such a conclusion is disconcerting as it calls into question our very American ideal of winning, it leads me to conclude that this probably isn’t about winning at all. Hold on to your hats America triumphant! This one is a hard one for us to get our collective heads around, because for all the vaunted power we think we can project, there is this one fact, that lurking in each one of our futures is the supreme knowledge that we don’t get out of this one alive. This realization is bewildering at its very best. It raises questions about personal anomalies and human challenges. It puts us on the spot with dis ease, and it brings us closer and closer to our mortality. As one of my dear friends reminded me, the proper response should probably be Sean Connary’s line, “What are you willing to do?”

For some reason, and I cannot tell you why, I have always known that each challenge, trial, and tribulation was preparation for the next challenge, trial, and tribulation. It was strength training in the aerobic exercise regimen of life. It was not meant to be gotten through. Rather, it was meant to teach that more complexity, harder challenge, bigger consequence was on the horizon. The next big thing would push me farther than the last big thing, even though at the time, I couldn’t imagine mustering the ability to get through any more than I already had.

I am telling you this, because it helps to explain numerous moments of grace revealed to me through dis ease. I have responded inconsistently by either writing “correctives”—some sort of whining moaning complaining lashing out and feeling sorry for myself—or by being blown away by wonder at the centeredness, the closeness of friends and family, the emotional engagement, the utter human gratefulness for another day of life. Both of these responses are a way of bringing balance to the equation. I think this has to do with a fundamental human discomfort with the grace and gifts that I now perceive beyond what I could have known before. It is a big responsibility, to take on mortality with some semblance of acceptance, with some lack of fear, with some modicum of awareness of this most human of God-given gifts—the rebooting of humanities’ hard drive as Steve Jobs spoke of it—and to go ahead in spite of the ending. And I guess that as I deepen my understanding of the very real presence and presents that ALS has bestowed upon me in the last year, I get more and more comfortable with the mortality, less and less afraid of the final destination, and I am grateful.

So, what would you do? These realizations of the journey, made much clearer by the stark fluorescence of dis ease, give us remarkable options. I don’t have the wisdom or the energy to judge the ways that each one of us chooses to go, but I do have the privilege of walking (actually rolling now) the path with dis ease in a way that slows down time and allows me to process the different pathways more methodically. Each of us is on this path, and each of us makes choices that will determine our fitness for the final trial. Like exercise, the challenges that confront us throughout our lives, can make us stronger, more ready to handle the next challenge and the next and the next. And like physical challenge, there is always something out there that is bigger than us and beyond our capacity, our capability. We are given multiple roads through dis ease, just like we are given the choice of how we care for our bodies in health.

My choice, somewhat unconscious at first but very conscious now, has been to pay as much attention as I can, to share what I learn—not as the end all and be all—but as one person’s experience of the journey, documenting the physical regression and the emotional gain, the highpoints of engagement and the lows of loss. And many of you recognize the experiences, either because your own dis ease is quick and obvious, or because it is slowly gnawing at your core, creating doubt about what this life might mean and where it is heading.

I cannot tell you what to do, how to think, where to travel in this life, and it would be presumptuous to try. I can tell you that dis ease has given me gifts unlooked for, in love and hugs, tears and laughter. It has not been easy, but it has been entirely worth it. I can see challenges getting harder—tomorrow, next week and next month. But I think I know what I will do.

With a little bit of luck.

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11 thoughts on “What Would You Do?

  1. As I face my own life challenges, I draw strength and hope from your experience. Thank you for the lessons 25 years ago and now again today. You have my gratitude, love and prayers. Merry Christmas to you and your beautiful family, Liz

  2. I like your observation that the current challenge and trial prepares us for the next challenge and trial. I think you’re right if you have the courage or wisdom to look at it that way. As always I appreciate your wisdom and find encouragement in what you write for my own life.

  3. Bruce, I hear you. Perhaps my awareness of what opportunities might present themselves for learning life lessons was rather simple as I became determined as a teen to age with grace, no matter what. That determination has been a steady guide for which I am most grateful. Once again, thank you for your wise words which enrich my life.
    Barb

  4. Bruce, twenty years ago, I could never imagined what each person in my family would go through in their life and how two of them would die and one would survive in some medical miracle scenario. I was so far away in Thailand but, now I am here living with my father and Tom and I are trying to make his journey comfortable and make him always aware that there are two family members here whom he knows, recognizes and helps him feel less alone. It has been a challenge for us but perhaps will make our own future challenges more understandable. I know now more than I have ever known that my family is my all. They are the achievements of my life.
    I am so happy that you have that kind of love surrounding you and are secure in the knowledge that they will be there for you always. xo Liz

  5. I am a little rough around the edges….sorry for the profanity. But know that you and yours may always rely upon me to the end of my days. I will always try to follow you, unless I lead. The strangeness of this life allows me to walk and grieve. I love you so.

  6. Our lives have been so enriched from our friendship, Bruce, as you have shown us all how ‘to cope’ and learn from our individual dis-ease. Mike and I both send our best wishes to you and Ev, especially at this Christmas Season, for continued sharing of all of our stories. May you both feel the warmth of the love from all of your family and friends. Carol and Mike

  7. I agree with you in that all the challenges and tribulations strengthen the spirit, to prepare you for other things to come. That is how I felt when I lost my husband three years ago, and I had to draw on that strength to take care of my little four-year-old. You are facing your dis ease with great dignity and courage, and through your choice of taking us along through this journey, you are also sharing valuable life lessons that we are all benefitting from. Thank you Bruce. You have always been an inspiration to me, as my music teacher in High School 25 years ago, but now more than ever. I am so proud to say that you were my teacher. Know that my prayers are with you and your family.

  8. Bruce, what I hear in this blog is gratitude. What a fortunate man you are. To be able to see the gifts that come along with the sorrows of dis ease is a blessing of great magnitude. In my Christian view of the world, this gift of gratitude is a grace. You are truly blessed.

    I have something I would like you to consider. I would like to make a contribution in my own small way. Let me explain. While I was at the quilt store recently, I was given a flier for a quilt challenge. This quilt challenge happened to be for ALS. This challenge called Hopes and Dreams for ALS is asking for lap quilts. The thought is that there is a great need for more research and awareness of this dis ease. Plus there are many ALS sufferers that are isolated and forgotten. My first response was yes, I will do that for Bruce and all the others suffering from Dis ease. But then my quilting friend asked me why not send it to you. I couldn’t answer that. So what would you like Bruce Kramer. Would you like this to come to you, or would you rather I send it on to someone else through the challenge. If it wouldn’t be to much to email me at Jimleah73@aol.com that would be great. You decide please.

  9. Bruce, your question “What would you do?” and your blog in response got me thinking more about measurement. All too often it’s quantifying how good, how much, how long (or short), even how desirable and deserving are we of this life with its physical, emotional, societal, economic challenges. You reminded me of the need to focus back on the journeying…the loving, sharing, caring, laughing and yes, even whining sometimes. Here’s a song from the movie RENT …

    With lots of love,
    Ernestine

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