Happy Complicated New Year!

In the four years since my diagnosis into dis ease, I have sought to make the best of a bad situation. In writing about the experience of ALS, my commitment has been to be as honest as possible, even if I felt the situation showed me in a less than flattering light. I admit that at times, I pulled my punches, relying upon my reader’s ability to fill in the blanks, not making me describe in graphic detail some of the more physically compromising situations I have experienced. I appreciate the space you have granted me in this respect. It has allowed me some semblance of dignity in even the most immodest of situations. But now in the past four months, I find myself more reflective than I have ever been in my life. And this reflective quality has made me question whether I have been honest enough. I am on the fringes of my life, and my feelings are confusing yet beautiful, frightening and powerful, profoundly spiritual while grounded in day to day experience.

In other words, my dis ease becomes more complicated, and communicating clearly about it confounds me.

The elegant hand of ALS holds great surprises. I never knew that so much grace and peace and joy could be found in the inexorable experience of dying slowly. Dis ease plunges me into a pool of beautiful sadness. It focuses me so that each day, I awaken with profound gratitude for my true loves, my one and only, our sons and daughters in love, our energetic, remarkably bright and ever-growing granddaughter. I am overwhelmed by the thankfulness I feel for friends, those who volunteer to care for me, those who engage me in their day to day life challenges, those who share gifts of music and poetry and yoga and life possibility. Yet simultaneously, an undeniable fatigue dogs me, washes over me, nips at my heels, impedes the energy I might muster for the very things that so delight me. The daily life challenges I experience – total dependency on others for the simplest of tasks, the continuing breakdown of basic physical functions such as swallowing and breathing and the like – exhaust me into sweet anticipation of the relief that will come with my death. Death has become a good friend, a harbinger of the final joy awaiting me, assisting me to shed the ALS revealed imperfections of my physical body. The spiritual conflict is clear – I am utterly in love with this ever deepening experience of living while at the exact same time I happily anticipate the relief death will bring.

I tell you this not to elicit sympathy, not to shock but to describe, in as honest a way as I can, what it is like to be a 58-year-old man with advanced ALS – it is complicated.

I suspect that this complexity is one of the reasons that we humans don’t like to think about death, talk about death, place death on the altar of our lives and give it the due it truly deserves. Death’s consideration seems so antithetical to life, to living fully, to the joie de vivre that all of us believe we deserve. For me, it wasn’t until I was confronted by death’s reality that the juxtaposition of life and death became even a little meaningful. And I also suspect that for the vast majority of us, this first juxtaposition takes place when a family member or dear friend faces their own mortality. Even here, the complexity is not readily apparent since it is someone else’s death with which we have to deal. Our feelings focus on disbelief and anger and grief at the loss of loved ones. Meanwhile, our own mortality might be briefly considered, but it is just too easy to ignore.

In the days before I believed in death, if I gave any thought to it at all, my belief would have been that death was singular, individual, and that it’s only lasting effects were a loss that those left behind would eventually get over. This was my own experience, in spite of the fact that death had been with me since the age of 14 when I suffered the death of a friend. As I matured, I witnessed numerous family members passing from this life. I had ample experience of other’s deaths, but no encouragement to believe in anything remotely resembling my own. The concept of living while dying was too complicated to incorporate into my day to day living.

Now, I am a believer.

The simple realization of ALS requires unvarnished honesty just to deal with each new loss. Living while dying is no longer a theoretical concept but a necessary reality, and it can be confusing. The conflicting feelings that frame the final months of my life have emerged a new reality. As much as I would like to go it alone, this new space is so complicated that support is a requirement and not an option. Going it alone makes no sense. Without support, life for me and those I love was becoming too chaotic. The noise of the chaos overwhelmed us as we sought to discern appropriate levels of care that conformed to the energy we possessed and the resources we had at hand.

This is why we engaged hospice care.

The decision to move into hospice provides experience and expertise to help us make these final decisions as the endgame becomes clearer. I say we, because ultimately it is our family that has engaged hospice care. My own imminent death, coming whenever it shall come, is not our only consideration. From the beginning, ALS has affected not only me, but family and friends. Hospice affords support for all of us. Now, there is a stability in our lives that was not present four months ago, and while the complications have not gone away, the meaning of our lives together continues to deepen. Our decisions are no less complex, but our caregivers, nursing staff, and others who are part of the hospice team provide a quiet, dignified and knowledgeable resource as we negotiate the inevitable irritations and discomforts that go with advanced ALS. Meanwhile, they support us in anticipating the larger challenges that lurk on our horizons. Inevitability and anticipation, love of life and welcome death is what we now consider, with all their joyful complexity and sad simplicity.

The challenge is to not allow the inevitable day to day comfort issues overwhelm the meta-dialogue about what it means to die well.

Our hospice nurse has a knack for asking questions that hone in on the issues that lurk below the surface, that define both a good life and a good death. These are the conversations that transcend the rashes and sore muscles and joints, the curled fingers and swollen hands and feet, leaving them in the functional dust of symptom and relief where they belong. It isn’t that symptom and relief are not important, it is just that once we have decided on the analgesic and patches, the padding and massage, the pills and painkillers to deal with each irritation and pain, there still exists a vast chasm between what generally emerges in conversation and what is left unsaid. This is where our nurse demonstrates such skill.

We have discussed what it means to die well. The endgame of ALS is too often framed by a sense of powerlessness. We feel powerless against the inevitability of each symptom, each loss that is in our future. There is no legal or moral reason to feel powerless, but our choices are often limited by the fact of who is treating us.  Hospice ensures that we can evaluate whether or not treatment unnecessarily prolongs pain and suffering or whether it provides relief. It should be our choice as to whether we receive any treatment and what that treatment should be. For me, a ventilator is treatment; a feeding tube is treatment. At some point for all of us, the balance tips so that in spite of the fact that we have a tremendous love for the life we have been given, it has also become so painful and difficult to live, that further treatment is actually cruel. To die well means to choose what happens as the ending becomes inevitable.

This blog has been one of the most difficult that I have ever written. It opens all kinds of questions that each one of us will face. Unless the goal of dying well has been rejected, we have to talk about these things. Death affects everyone, and the complexity of loving life and welcoming death is confusing. If we value dying well, filling out a form style, so-called  Living Will, does not accomplish the kind of deep conversation that all of us will need as we approach  our own deaths.  I have known that this time was coming for me, and there is still much that I wish to accomplish. This is hard stuff, but it ought to be. Life is a remarkable gift. The choice to end procedures that prolong it is very personal and requires great care and respect. Most of all, it requires honesty.

One of the reasons this is so hard to write is that each one of us carries our own baggage, our own interpretations of what it means to consider our deaths. Many of us don’t realize the resources that might be available to us (my hospice care is covered by Medicare for example). I don’t ask for your agreement with what I have written above, but I do ask that you respect my thinking about my own choices. And I do want you to know how helpful it has been to engage these questions with our caregivers from hospice. Too often, people are afraid of the reality of their life’s end and this causes them to avoid the support that is available until it is almost too late. The end of life is a confusing time, and we do not have to go it alone.

For me and my family, we now experience the support to better negotiate the next steps looming before us.

PS: please vote for this blog @Healthline.com. Currently, it is number 23. You can vote once per day, and there are 11 days left in the voting. Many thanks.


20 thoughts on “Happy Complicated New Year!

  1. Bruce that was so beautifully written. You are very right, a person has no idea how meaningful life and death are and what it means to die in your own way. My mom passed away from ALS 1 year ago, 20 months from her diagnosis. She never second guessed any of her final decisions and even though she wanted nothing more than to be with family and friends, she was exhausted. I know she is at peace. Gods speed to you and your family. Thank you so much for your beautiful entries, you have a gift and I feel fortunate to have been able to witness it.

  2. Dear Bruce,
    Of all of your blog entries, this is your most eloquent, most poetic, most inspiring (for me). Always the teacher-leader, you continue to muster the courage and the energy to quicken our senses and deepen our consideration of life’s largest questions. I wish you peace and profound joy this cold, January day. You are loved and respected for the man that you are and have become through this journey.

  3. Dear Bruce,
    Last year I had the privilege of spending time with my father to experience the last few months of his wonderful life. Perhaps as farmers experiencing the birth, life and death of animals it was easier to talk about the end of his life and we had often chatted and laughed about what he wanted as a dignified end to his life. It also made it easier for me to make decisions on his behalf at the end as I knew exactly what he wanted and could make decisions with his doctor and nursing staff with confidence as I knew his wishes for non invasive care. Thank you for articulating so well this often difficult time for families and friends. Thinking of you, Ev and your family.

  4. My dear Bruce,
    As usual, so beautifully and thoughtfully written. I have found that Hospice staff are wonderful guides into this new place where we do not know the way, or speak the language. Such a foreign land that all of us will visit. Know that we love you.

  5. Dear Bruce,
    New to your blog, 2nd one I’ve read. Not new to the disease, 2 1/2 years from diagnosis. Have not seen a description of the beautiful acceptance of death that the disease can bring written with such introspection and honesty. Pray that your journey in this life is completed as you wish.

  6. Bruce, I have been struggling with the right words to acknowledge the advent of the new year with you. Happy New Year just couldn’t make the cut this time around. Happy “Complicated” New Year just about does the trick though. Finding enough peace in your life to be able to focus on what is important to you and your loved ones is a blessing, and I hope hospice will do that for you. Your words are lovely, and quite frankly they made me cry. But I am happy for you and the choices you’ve made. You continue to amaze. Sending much love your way from both Laurie and myself.

  7. Bruce, thank you. You have given words to so many of the jumbled thoughts in my mind as I follow in your footsteps. I am glad to know how Hospice will help. ALS has taken away so much. Good to know we will have that care and support for my choices toward the end. Bless you for your openness.

  8. Even though I could not get through reading this blog without crying, I want you to know how much I valued every one of them, but especially this one. I have been filled with awe and respect at all the decisions you have made along this journey, and you have every right to continue making them as long as you can. Sending love to you and Ev.

  9. Dear Bruce,
    I cannot fathom the decisions that you and your family have had to make. I cannot fathom the experience you have gone through with ALS. Through your writing you have shed a light onto the dis ease and onto the progression of the illness and now the process of dying. It is very difficult to read. It is honest. It is true and is something we all will face one day ino be form or another. You have such courage. Personally, I could not face it with the courage you have shown. The acceptance, the strength. Through your eyes and words we have seen the meaning of grace and I thank you.
    You are surrounded by love on your journey home, Bruce.
    Love, Anne

  10. I echo Carol’s words. I teared up reading this blog entry. Beautifully written. Poetic, in fact. I must admit I have “death issues,” and this post resonated with me on many levels. Godspeed to you, Ev and your family.

  11. Bruce, I am writing a post now in which I am sharing my thoughts about this post. With your permission, I would like to link back here, and include a small excerpt. Is this okay? Thank you again for your honest and insightful blog.

  12. Dear Mr. Kramer,
    I don’t know you, but your words, though painfully honest, were beautifully written. I believe someone said poetic… and I agree…. Though I have not dealt with my own fear of death, you have eloquently expressed the complexity and unique balance between the love for life and the inevitableness of death ….. Your writing is inspirational, letting strangers in on your innermost thoughts, which was not easy to share. There is a quieting comfort in knowing that you are not alone; as you are blessed with a loving family and great hospice care…

    One of my best and dearest friends has had ALS for a long time and you have opened my eyes to what she must be going through every day of her life….the agony of her pain accompanied with the love and happiness of her family and I’m sure, overwhelmingly integrated with the ever-looming threat of death… and I am ashamed of my own fears and discomfort…..
    God Bless You and Thank You for your bravery and your insight!!!!
    Lucille Comignani

  13. Pingback: This is What I Want | Ok, so far

  14. Bruce, as ever, I am inspired and impressed by your words and insights! You and your family are in my thoughts and Prayers. Miriam

  15. Dr. Bruce, Thank you for sharing again. Your ethics class in my leadership grad work was very provocative, and though I was extremely busy with professional and personal life, I always looked forward to your evening class, being bone tired but engaged. As my advisor, I appreciated the personal investment you provided me. I continue to pray for daily joy in your suffering as I know God is with you in this journey. Just preordered your book. “I walked a mile with pleasure, she chatted all the way, and left me none the wiser, for all she had to say. I walked a mile with sorrow and ne’re a word said she, but oh the things I learned from her, when sorrow walked with me.” Unknown

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