Bruce Kramer —
Forgiving the Body: Life with ALS

From the moment of his diagnosis with ALS, Bruce Kramer began writing — openly, deeply, and spiritually — about his struggle, as he puts it, to live while dying. He died on March 23, 2015, while we were in production on this show. His words hold abiding joy and beauty, and reveal an unexpected view opened by this disease.

Share Episode

Shortened URL

Guests

was the creator of “The Dis Ease Diary” a blog about his life with ALS and We Know How This Ends: Living While Dying. He was the Dean of the College of Education, Leadership and Counseling at the University of St. Thomas, where he served on the faculty for over 19 years. He was a passionate music lover and was a choir conductor for most of his adult life.

Featured Writings

The Beauty Revealed by ALS

Bruce Kramer chronicled his journey in over 30 interviews with Minnesota Public Radio's Cathy Wurzer and on his blog, "The Dis Ease Diary." Read a selection of our favorite essays by Bruce Kramer, from his post on "the look" to his musings on the story of Job:

Living with ALS: Interviews with Cathy Wurzer
» "Cathy Wurzer Remembers Bruce Kramer"
» "Bruce Kramer: Living with ALS"
Essays from the Dis Ease Diary
» "The Look"
»"Job 2.0"
» "The Winds"
» "Despite and Still"

Selected Video

In the Room with Bruce Kramer

"Legacy is an act of ego. But education is an act of faith."

Bruce Kramer and his wife Ev Emerson sat down with Krista Tippett in December, 2014 for an intimate, expansive conversation on the unexpected elegance of living with ALS. Watch the video of their conversation here.

About the Image

Bruce Kramer at his home in Hopkins, Minnesota on February 6, 2014.

Episode Sponsor

Share a Reflection

38Reflections

Reflections

This interview was emotionally satisfying for me and put into words the short experience I had "living with" circumstances of illness very recently,although not at all close to Bruce's life experience. In the fall I had a serious fall shattering my kneecap making me non-weightbearning on that leg for 3 months. As a hiker and therapist my life revolved around my physicality and those gifts were instantly taken away.Those things that were my identity disappeared as soon as I hit the floor. I was in fighting mode as soon as it happened until I realized I physically had no control over my circumstances. After surgery and return home, I fixed up my little nest of a life and started to ponder on the positives of being where I was. Every morning was a quiet search for the gift of the day. I got to watch fall...really watch it, outside of my window. There was a neighbor I had know for years...but not really...until she made a visit to my house every week day...her job. There was a ready lap for my cats,especially my actively dying cat, giving me real time to say goodby. I acquired much more insight into the barriers that face my patients and the fear and uncertainty of what "they" were going to do to me that day in therapy.I was able to "really" evaluate the handicap environment of my community...and was quite vocal about changes I thought would be most helpful.And now that I am back doing most of the things I was able to do before but also limited due to some residual deficit that may or may not return, I find myself rejoicing much in what I have right where I am every day. I told my husband as we were discussing this interview that although I am for all intents and purposes back where I was...I oftentimes find myself reflecting back and in a strange way...yearning for the peace of that time place.

I have nothing but gratitude for Bruce and his wife, my love and prayers go out to his family and friends, you all have truly been blessed.

My husband died 10 months ago of ALS, about 2 yrs. after his diagnosis. Living with ALS or "living in spite of ALS" was only possible for part of the time because he was part of the 1/3 of people with ALS whose cognition was affected with FTD (frontal temporal dementia). In retrospect, sx's were present for long before the physical manifested, but his essential brilliance covered up much of it for longer than it would have otherwise. He had found an article, "when the brain goes awry" (in ALS) that helped him understand what was happening to his brain, altho later could not process it any longer. These changes turned out to be the most heartbreaking ones as they really did take away the ability for us to "live" with the ALS. Horribly, he retained the insight that he couldn't think right or get his thoughts to make sense.
Bruce Kramer talked about living while dying. There was a fairly long period of time when my husband had pretty severe fasiculations thru out his body (rapid,muscle spasms- think of times when your eyelid has gone into "muscle spasm'ing which has happened to most people). When I would lay beside him, I could not help but realize I was actually literally feeling him dying.
Another memory came up as Bruce Kramer talked about being "looked thru" by others. He said people would talk loud to him. Ironically, my husband had severe hearing loss since childhood and it was a help that people talked louder than usual to him, which was mostly by happenstance. On what I knew was our last trip on an airplane and in an airport, my husband had to use the bathroom. Altho he used an airport wheelchair for most of the time in the airport, when we were close to the exit and pick up in a car, he was walking with my help and obviously had walking and balance problems. He wanted to go in by himself and as he started to go into the door, a man who was also going into the bathroom, just said, "I will help him". It was like he saw help was needed and he could provide it. No "looking thru" which was a big help at the right time. I only wish he had been able to keep his brain intact so we could have lived longer with the physical manifestions of ALS. There is nothing positive in that part of it.
There are millions of thoughts and memories of my experience of ALS-it was as if I had it also but could still totally move.
The one absolute positive, was that his self estranged dtr. (about 5 yrs. prior had cut both of us off for reasons that still remain murky), was able to "come back", drop the emotional concrete walls, hate, resentment, anger, etc. she was carrying (this was no easy process and took time and a lot of work on her part, his part and in the background- myself and his former wife (and mother of his dtr)- I knew he could never die in peace without his dtr. truly coming back and forgiving him for all the wrongs that were real or perceived (didn't even matter) and her mom realized that she would forever have regret, even tho she (dtr) initially felt it was really of little consequence to her. She recorded a song for him that reflected what changed between them because of his illness. It was Angels fly too close to the ground, originally by willie nelson. My husband found meaning in his deadly disease knowing that if not for the ALS, he would not have had a true reconciliation with his dtr. and a more real and deeper relationship. Knowing that ALS is what it took for this to happen, he would choice again to have it.

The ability to respond to life, rather than react, indicates growth of our ability to have subjective insights. In the best scenario this brings happiness.

I have been a longtime fan of On Being, but this episode cracked me wide open. My mother, who was also a musician, died of ALS 11 years ago, and also made a short radio documentary about her experience. In her case, it was about being heard while losing her voice. The dis-ease of this experience remains with me and my family despite the passage of time. My heart goes out to Bruce Kramer's family and I am grateful for his willingness to share his experience. This documentary has helped me recognize the surprising gifts of ALS, despite its cruelty. It has also reminded me of the importance of honoring and taking care of the caregivers. Namaste.

one of your very best interviews - he had such remarkable insights said so well.
thank you

I have heard many hundreds of Krista's interviews over the years that have moved my heart. Bruce Kramer's words may have struck deeper then any before. And how great it was that his mic was still on to hear the coda about getting his singers to dance. I once taught figure drawing to freshman students urging a dancing pencil and it always worked miracles with their lines. Bruce lived a beautiful and courageous life. In May I will turn 75 years. These past months I have been slowing down just a little. Bruce never did and nor will I.

I have been privileged to be in Minnesota these past years as Bruce shared his journey on local public radio with regular, intimate interviews. As I grieved for his passing this week and then heard this extraordinary conversation, I also realized that if it hadn't been for ALS, I and thousands of others would never have 'met' Bruce. I am so sorry this had to happen to such a man but I am also profoundly grateful he chose to let us travel with him. My thoughts are with his wife, family and friends.

I just listened to your interview with Bruce Kramer and felt like I was hanging on every word spoken. The quality of the interview was profound as it put into words what I'd been feeling over the last few years as I move through grief from 5 recent deaths in my family. (My sister had ALS, my mother pancreatic cancer, my father Parkinson's, my aunt was a medical mistake and my grandmother of natural causes). A HUGE THANK YOU from the bottom of my heart for your show On Being.

I was especially delighted to hear Bruce speak about yoga and his classes with Matthew Sanford. His book WAKING: From Trauma To Transcendence was one of the most amazing autobiographies I've ever read. (I am a yogini and a pioneer of teaching dance to people with different abilities).

I am also a professional aerial dancer and I rely on my kinesthetic abilities to keeps me safe while performing extreme movements 30 feet up in the air. Working with differently abled populations on the ground has allowed me to learn and discover from their unique perspectives on the ground, which I find equally beautiful.

But now, most recently, after being around so many family members passing, I've tried to make sense out of life. My world has truly been turned upside down. But it was when Bruce spoke of the diagnosis of ALS, how it was like he had been preparing for this disease his entire life, truly resonated with me. I feel like I've been preparing for this phase of my life and being an aerial dancer, and learning how to live in the air, upside down. I've weathered these deaths and tragedies and now divorce of 23 years with more spirit and wisdom than I could have ever imagined. We are all teachers for each other.

My condolences to Bruce's wife and family.

The fall of 1978 I took a social studies teaching job in a small Indiana town. I had to take a football coaching job to get it and I was like a fish out of water. I found a group of like minded souls in the art and music departments. Bruce Kramer was the choral music director and in the spring I took over the direction of the school plays and helped Bruce with the musicals. He literally saved my sanity. We went through his divorce and marriage to Ev and the birth of his first child, David who is named after me. Bruce and Ev began their adventures in international education and we stayed in touch. After my son was born they returned home and the last time I saw him was somewhere in the late 80's. Now I realize how much I regret losing touch with Bruce.
Today I was driving to the gym and listening to On Being and hearing this wonderful man talk about dealing with death. I was so moved by the peace he had with it. Then I realized it was my Bruce and Ev you were talking about. It was such a wonderful reminder of my times with him and how much he meant to me at that time in my life. I was deeply saddened to learn of his death. But was so grateful to have known him. He was an amazing young man and such an incredible grown and seasoned man. I am in awe of how he lived and how he died. Thank you for restoring Bruce to me.

One of the most moving episodes of On Being ever recorded.

The

Seat

was taken

the peace officers

followed

the law

Rosa

the moon

who is

your thief

who creates

space

for you

(the punctuation is missing)

ps. In referencing peace officers here I do not wish to convey disrespect to these folk who like school teachers, social workers, etc always find themselves on the ever shifting front lines as we struggle to work out policies and laws to create liberty and justice.

Very beautiful interview indeed. The fact that Bruce went to be re-united with GOD while the On Being team was producing the interview made me think about Bruce's wife and family and friends.. it has to be extremely hard to hear the interview of their beloved, who transmitted so much joy, love and compassion. May his soul shine everlasting in the altar of their devotion~

Beautiful. A life we should all be living. Thank you.

I listened to this show on Sunday and then again on the way to work. Bruce's profound insights helped me understand things about myself in a way I'd never considered before. This show is invaluable for anyone who has a chronic illness.

I first listened to the unedited version of the podcast interview and then listened to the produced version, as I wanted to hear the music Mr. Kramer cited in his wish list. My heart kept filling as I heard his wise words and lovely reflections on life. What a joy of a man! This interview was so good, I downloaded the interview for a permanent place in my iPod. It's one I will definitely listen to repeatedly.

What a beautiful man. There is much to learn from this story. When I first saw the title on the web site, I didn't want to listen because it seemed too sad, but then I caught it when it aired & it was so profound. It really made me think about disease & disability in a new light. I hope I can apply this new way of relating to fear of the changing body in my own life. I look forward to the book & am thankful to Bruce Kramer for sharing his experience & wisdom & grace. A true inspiration.

Dr. Kramer was an inspiration before he lived so fully with ALS. He was one professors in graduate school, and I appreciated his writing, speaking and love of music. When Bruce Kramer spoke on your show over these past months I would often find myself moved to tears. I am a nurse and his ability to live so fully and see his body's lessons as a way for his soul to continue to grow was a gift to listeners. He lived true to his souls purpose, to teach and rolemodel life long learning. We are so
Blessed to have his voice and spirit captured in your shows.

Dr. Kramer was an inspiration before he lived so fully with ALS. He was one Of my professors in graduate school, and I appreciated his writing, speaking and love of music. When Bruce Kramer spoke on your show over these past months I would often find myself moved to tears. I am a nurse and his ability to live so fully and see his body's lessons as a way for his soul to continue to grow was a gift to listeners. He lived true to his souls purpose, to teach and role-model life long learning. We are so blessed to have his voice and spirit captured in your shows.

I always listen to, and love, the show, but this episode in particular attracted me because I am a hospice chaplain, and right now I have a patient with ALS who is in her early 50s. It seems to me there's a dearth of resources regarding spirituality and ALS, and I look forward to reading Bruce's book to see what other insights he had to share. All I find is a sentence or two here or there about how spirituality can play an important role in a time of illness. Well, of course -- but how can I best minister to my patient, and the others I will inevitably meet, coping with this particular illness? If others have suggestions for reading or viewing I should undertake to better serve my patient, I would sincerely appreciate recommendations.

Holly, Your hospice patients will teach you. I understand the urge to learn more about/from Bruce's insights. "If I have more information, I will be a better minister" is a trap I fall into regularly. Book-learning shields me from my vulnerability. I think being with your patients is all you need to "know." It is hard to stay present when I am focused on my ego, doing it right, being good. I believe being present is the very foundation of any healthy relationship. Your patients will teach you if you give them your full presence.

Listen to the unedited version. The flow of the conversation including these deep silences make it a more powerful interview. What a beautiful dance by Bruce, Eva, Krista and the entire production team.A warm aloha from Kauai. Can't possibly thank you enough for the part you play in my life.

Recently a very good friend died of ALS. She told me that some of her most joyous moments in life happened after her diagnosis. People gave her faith.

“The wound that would not heal was the well of cures”. This quote, of which I do not know the source, has sustained me during 7 different chemotherapies over 6 and one half years with metastatic breast cancer. It seems that Bruce Kramer experienced this also. As many sages say, suffering is the path to transformation and healing. It is not something we would choose but, when suffering is experienced through this lens, it does seem to to offer an incredible opportunity. Going through chemotherapies is nothing like enduring the relentless decline of ALS, a challenge I can not even imagine. With cancer one is often able to buy more quality time to enjoy the wonder of this visible world and our relationships in it. But with both one has the choice to say “ a long, deep fully conscious farwell” and ponder the “deeper mystery that lies ahead”. These words from Mary Morrison’s little book, Let Evening Come, inspire me too.

What a wise couple. Bruce was coming from a source far greater than neo-cortex, he was coming from what we might call heart or perhaps spirit.
I agree with other comments, this is possibly the best interview yet. I worked as a nurse in private duty care with a young man with quadriplegia and dependent on a ventilator (picture Christopher Reeves). I'm not sure he experienced "the look" so much as non look out of discomfort or the assumption that he was mentally compromised. But also, Like Bruce, he was miles ahead of his college classmates in maturity and wisdom, which led to a feeling of disconnection with them.

My 55 year old brother died 2/8/15 -- 18 months after first experiencing the physical symptoms of ALS and 11 months after the official diagnosis. Many reflections shared by Bruce Kramer were also uttered by my beautiful brother while he lived with this wretched disease. We have a large family and unfortunately live states away from each other, yet we saw my brother every few weeks. I am still speechless when I attempt to describe my time with my brother during those 18 months. I am speechless again after listening to Mr. Kramer's interview. My brother was a high school English teacher of prose and poetry. He was an avid musician, playing claw hammer style banjo, concertina, and Irish tin whistle. He loved music. He loved life and loved his wife and daughter and all of us. My 90 year old Dad lost his little boy. I loved listening to Mr. Kramer as he became my brother, all over again. Thank you for your wonderful interview which I will now send off to my family.

Jane Hirshfield has a lovely poem in her volume Come Thief entitled
"Perishable, It Said". It reminds me to notice where my attention goes
and what my intention is as we live/die. It can be found online at Poetry Foundation Magazine.

Bruce was so right. As I listened to him, I was put in touch with my own story. Not in my customary selfish way but in a kinship, connected kind of way. I was exposed in my own particulars as he shared his.There are other names for what I suffer with,but today he drew me out and I was able to see him. As he touched his own vulnerability, I was free to see my own, and we were brought together in that.What a gift I was given this day. Thank you.

I work with cancer patients, sometimes keeping company with them into death.My patients have taught me what it means to love and to take risks. It seems to me that it is only when we realize that we are all moving toward death that we can begin to live fully and find joy, joy that transcends. Bruce Kramer's reflections are a gift to those of us who still have work to do, life to live.

Thank you! I just finished listening to the unedited version and loved it. I was diagnosed with ALS 1 year ago (April 8). I wanted to hear everything said and not said and am glad I did. The breathing interruptions are so much a part of my life right now, but I was so glad to hear his voice and spirit through it all. Additionally, his answers were PERFECT as to living with ALS. I had a license plate frame made that says Love Life, LIVE LIFE! Mr. Kramer did that. Now I don't feel so strange as I enjoy my day to day unlike some other ALS patients I know.

I wish I had listened to this last week, before I had dinner with friends. I would have been better able to respond to their questions of how I can be ok with my diagnosis. I had a hard time putting it into words, but I found them on the podcast. I am going to recommend all my friends listen to it and will share it at my support group tomorrow and at the ALS Advocacy Day conference in DC in May.

Mr Kramer and his wife lived with such dignity and love during this life experience. I pray that I stay as strong as he did. Thank you so much for such a timely story in my life. I can't wait to listen to it again with my wife and incredible caregiver.

Thank you so very much and God Bless.
Doug

"You take something, life, that is known, and then you dance it... "

20 years ago this month our Dad died due to ALS. I just listened to the interview with Bruce, moved by his words and wondering what Dad would have said... Dad lost his capacity to speak early in his "dance" with ALS, and the saddest day of my life was when he spelled out ( "First half of the alphabet Dad? Second?" Blink. "M,N,O,P,Q,R,S,T..." Blink.) "Too tired to 'talk' anymore." That was pretty much the end of spoken/blinked communication.

Listening to Bruce tonight (while cleaning, so need to listen again more attentively)....I thought maybe I heard Dad. Especially in the "coda" at the end of this edited version of the interview. (Sometimes I hear a choir and am sure I hear Dad's voice).

And Dad, still waiting to dance with you again. Or maybe I'll start dancing now.

"You take something, life, that is known, and then you dance it... "

20 years ago this month our Dad died due to ALS. I just listened to the interview with Bruce, moved by his words and wondering what Dad would have said... Dad lost his capacity to speak early in his "dance" with ALS, and the saddest day of my life was when he spelled out ( "First half of the alphabet Dad? Second?" Blink. "M,N,O,P,Q,R,S,T..." Blink.) "Too tired to 'talk' anymore." That was pretty much the end of spoken/blinked communication.

Listening to Bruce tonight (while cleaning, so need to listen again more attentively)....I thought maybe I heard Dad. Especially in the "coda" at the end of this edited version of the interview. (Sometimes I hear a choir and am sure I hear Dad's voice).

And Dad, still waiting to dance with you again. Or maybe I'll start dancing now.

Listening to this interview has changed my life. It has opened my eyes to the possibility of living with extreme pain. I listen to it over and over again to reawaken the sense of worth in my life when I start feeling down again. Thank you so much. What a blessing this is for me. And what an insightful person Mr Kramer was.

such deep gratitude for such a deep program. thank you for this gift. talk about living life! "living while dying" - what a perfect title.

I have been suffering from (ALS) disease for the last four years and had constant pain, especially in my knees. During the first year, I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i was searching on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from ALS by this Man DR.ABEGBU and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to DR.ABEGBU telling him about my (ALS) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the DR.ABEGBU assured me that i have cured, after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE So friends my advise is if you have such sickness or any other at all you can email DR.ABEGBU on DR.ABEGBUHEALER@GMAIL.COM OR DR.ABEGBUHEALER@OUTLOOK.COM I am indeed grateful for the help, i will forever recommend you to my friends!!!

I have been suffering from (ALS) disease for the last four years and had constant pain, especially in my knees. During the first year, I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i was searching on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from ALS by this Man DR.ABEGBU and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to DR.ABEGBU telling him about my (ALS) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the DR.ABEGBU assured me that i have cured, after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE So friends my advise is if you have such sickness or any other at all you can email DR.ABEGBU on DR.ABEGBUHEALER@GMAIL.COM OR DR.ABEGBUHEALER@OUTLOOK.COM I am indeed grateful for the help, i will forever recommend you to my friends!!!

Good Day everyone, just want to share my experience here, because i have been screwed by some of these fake casters...

My Husband was DX with ALS for years and i went everywhere to get useful information that will help cure or suppress the disease. then i came across testimonies of those that took my hard earn money without any useful information or cure but they keep telling stories. about two months ago, a new staff was applied in my place of work and when He heard about my Husband Disease He was so remorseful and told me about Dr ozalogbo.but i felt it was still one of those internet guys so i didn't call or text Dr ozalogbo. later that week, He asked me if i have heard from Dr ozalogbo and he gave me proof and reasons to try. well, lots of thanks to Dr ozalogbo because as i am writing this message, my Husband is CURED through the herbs that Dr ozalogbo sent to us. so after my experience, i decided to save some people from falling to the hands of SCAMS. thanks for your time and if you require the service of Dr ozalogbo you have to reach him via email: ozalogboshrine@yahoo.com or ozalogboshrine@gmail.com

My life has never been the same since my sister was diagnosed with ALS and died on Sept. 24, 2010. We shared 68 years of a wonderful relationship. Although I miss her each day, I have faith that, someday, we will be reunited in heaven and continue the joy we experienced here. My prayer now is that some discovery will prevent, or banish, ALS forever.