On December 6, 2010, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s Disease. My, how things have changed since then. This blog is offered not so much as a commentary on the “progress” of the disease, but more as a weekly reflection on life, informed by the fact that each of us is temporarily able bodied and none of us gets out of this alive. So where is the grace and the goodness in that? Read on MacDuff, or better yet, add your own strand to the coming conversation.
Dis Ease Diary
In sickness and in health
Dis Ease Diary 
You rock!
Every morning I ride two floors up in the elevator at South View Middle School. One would think I’m avoiding the needed exercise. However, that’s one of my favorite times to pray, taking in the breath of God to fill me and praying for God to be with those I love and care about. You are on that elevator with me each day as I keep you and Ev close in my heart and prayers.
Lynn
One of our friends termed this as “our adventure.”. When I looked puzzled, he added, “not all adventures are entirely pleasant- but they are still adventures. They push you to your limits and often beyond your limits, but you learn so much about yourself.”
It’s not an adventure I would have chosen for you Bruce, but I’m along for the ride.
I think you will find this “blogging” good for your soul and a much easier way to communicate about your “adventure” to the many friends and family members who love you and pray for you and Ev.
Trying to figure out how to subscribe. Hope this works.
Always there in my thoughts and prayers, Bruce.
Bob
Bruce,
What a way to get back in touch with each other :). Picturing you with a Buddha belly says that the middle age spread gets us all (although maybe not Ev) one way or another. You are the first blog this luddite has ever signed up for. Keep writing – will keep reading.
Prayers and love to you, Ev, Jonathan and David
Many years since I last saw you, and many miles away… you still inspire me, Mr. Kramer.
Rania Zaki
Thanks for reading Rania. I think of you often, and I know that you are faced with challenges well beyond the removal of a president. All the best to you and yours.
Bruce
Write on. I haven’t missed a word yet!
Keith
“To inspire”…that is what you did for me during the doctoral program, throughout my dissertation, in our visit last Friday and now in reading your blog. Thank you for sharing this experience with all of us who care so much for you. I have been thinking about what you said Friday. “We are all aging, I am just aging faster!” Jo
One of your former students turned me onto your blog, and I’m so glad he did. Can’t wait to read more.
Hi Bruce, we don’t know each other, but I felt compelled to leave you a note after reading the recent piece in the fall St. Thomas magazine. I am a 1992 St. Thomas grad; hence one connection to your story. I have a more personal motivation behind my note, however. A dear friend of mine, Eric Lowen, was diagnosed with ALS on March 17, 2004. Eric’s valiant battle with ALS ended 8 years later, this past March, 2012. He used to tell me that people, often strangers, would say random, odd things to him about his ALS. And here I am, a stranger, sharing my random story with you, complete with a song that he wrote because reading about your story touched me. So…here goes.
Eric was a professional musician, one half of the duo Lowen & Navarro. He and his partner Dan Navarro wrote and performed their music for 20 years together as well as wrote many songs for other artists, the most notable of which is the Pat Benatar song “We Belong”. Eric was an incredibly talented singer/songwriter and wrote a number of songs about his experience of ALS. Eric wrote one of his first songs about his experience with ALS in fall, 2004 and he sang it until he could sing no more. It’s called “Learning to Fall”. He wrote it so that we all can remember that everyone falls, and we all need to find ways to appreciate life. If you’d like to hear it (there is a video as well), you can find it at: http://www.youtube.com/watch?v=oeaO6TvGX4w
Thank you for sharing your story. When I read your story and your blog, I hear the words of my friend. I spent a lot of time with Eric as he endured those papercuts you speak of, and he remains my hero. Reading your words of reflection, hope, loss, and inspiration, which sound so much like his, I am again reminded of the incredible gift he was in my life. I am sure you are the same kind of gift to the people in yours.
What surely seems a lifetime ago you were the first to introduce me to the world of online classes and the fun of computer generated class presentations…it only seems fitting that your story would be the first to motivate me to sign up on a blog. Nearly two decades ago my path in life crossed with Dr. Bruce Kramer’s and life has never been the same…he challenged me, stimulated my interests beyond the confines of borders and inspired me to really become passionate about things in life. So, this chilly Monday morning I sat down for my quiet cup of tea before the busy day begins and thirty minutes later I left for work crying after picking up my St. Thomas magazine from the stack of mail…crying not for Bruce and his courageous battles of the past and the present but really deeply upset for the students out there who won’t know him and his wonderful, intellectual and caring look at life. My prayers are with you and your family and I will be a faithful reader. Know that you are a giant in my life — one who could slay dragons, set aside my fears when I was truly frightened and get me to believe that good would prevail.
Dear Bruce,
I will never forget the day i came to your office after deciding that I didn’t have it in me to do qualitative research and was going to quit the doctoral program. You convinced me to stay and that it was important for a quantitative researcher/biochemist to engage in story-telling and story-listening.
Thank you for being such a remarkable and patient mentor on this journey, that is life. Wishing you and your family the best, Dr. Kramer!
~Mirabelle
Dear Mr. Kramer, I was glad to have been forwarded your link. My husband’s family has familial ALS. We lost his mother, his older brother, his older sister, a couple of cousins and aunts. ALS is a horrible condition. I admire your strength and something that I have told my husband since the passing of his mother. Live for today!!! I am praying every day that my husband will not be “next”. Continue to be strong and say “I love you” as much as you can. My heart is hopeful that a breakthrough is near!! God bless you and your family.
Dear Mr. Kramer,
I attended your talk in Rochester yesterday. You said you were not so much afraid of dying as you were of not doing enough to soften the blow to your loved ones (my paraphrase). I had to restrain myself from jumping up and shouting, “You’re doing enough, brother!” Of course, I don’t know you or your family. And I don’t live in the same house. I bet lots of others were thinking the same thing, though. Thank you for having the courage to open your life to the world. I felt part of a larger human family for two hours.
Greg
p.s. I have lived with a chronic illness for 36 years — since I was 12.
Dear Mr. Kramer,
I know you only through my Christian brothers and sisters at Hamline Church. As I enter a deeper prayer journey for this part of my life your life came to mind. I looked for your blog once and heard about you on the radio but let the illusions of my life distract me from hearing and seeing you through your own words. But silence brought real vision. So when I looked this time I found you.
I’m not the greatest human being if all things get added up on me but if I’m following this Holy Spirit instruction correctly, know this:
You are a brother to me and the banner of souls will flow in the wind together as all things come to pass.
Peace,
a little parishioner
Vectors are directed forces that one day take us where we would not go. Their forces move us against our will.
But an arc! An arc is such a smoothly curved journey of first rising and then falling. We are tossed up and then we fall.
At the topmost, still point, we find ourselves briefly weightless, hung in space, followed by the first slow, then fast-sweeping, rushing fall.
Yet, we are each a star, and our life one day a flaming out that marks our singular trajectories., still leaving ripples on the warp of time.
The blessing of our purchased grace is, when time is gone, we shall all rise and shine again, never more to fall.
Bruce…The other day we read a dinner blessing:
“We ought all to make an effort to act on our first thoughts and let our unspoken gratitude find expression. Then there will be more sunshine in the world, and more power to work for what is good.” -Albert Schweitzer
Then on Wednesday morning I was listening to the Morning Edition Internet stream, as I often do because I love the connection to Minnesota it gives me here in Texas (we moved here from CA back in 2010), and I heard you talking with Cathy Wurzer. It brought back wonderful memories of choir at Good Shepherd UMC, and I felt so compelled to reach out with a hello and long-distance hugs for you and Evelyn.
I wanted to send you my gratitude for those few years when I was blessed to sing under your direction. I learned more about singing and choral music in that short time than I had in any other years of choir. Now, when I am at choir rehearsal here at A&M UMC in College Station, TX, I so often think of all you taught me, your high expectations and pushing, yet tremendous support for and belief in our little choir and in each of us. I so well remember your energy, spark, drive…and admire you for sharing that energy, spark, drive, strength and deep wisdom now. Thank you.
-Sara
Dear Bruce,
I has been many years, but I’ve been staying informed about your journey with ALS through my mother. This is the first I have visited, and read your writings. I have thought of you often over that past three years. I’ve never forgotten the passion, talent and enthusiasm for music that you shared with myself and many others during your time in Bangkok. In fact, the unwavering confidence that you showed in my piano abilities during The Brahms’ Requiem is something I will carry with me, always. You believed in a young, performance-shy musician, and the time I spent making music with you and Evelyn was immeasurably special. You continue to inspire. Peace to you, and hugs from Philly.
Dear Bruce,
Your writing is inspirational. I’m wondering if you know anything about a connection between ALS and Lyme disease? I would like to meet and have coffee with you sometime.
Be loved,
Kamala
Dear Bruce,
Not sure where to start, other than we live in the Twin Cities, my husband was diagnosed with ALS about 1 year to the date after you, we listen to your podcasts on from MPR, so many questions and so little time. He is investigating DPS with the Mayo clinic. Everything on the internet is extremely positive, which is good but not necessarily believable. You have said you did your own research on the topic before making the decision for yourself to try it. Where did you get objective information?
Dear Bruce
I can’t believe that I have only found your blog now! I’ve been on my own journey with ALS since July of 2010. Thank you for this gift!
God Bless
John
Dear Bruce and Evelyn,
Freda recently shared this on her Facebook feed:
A former International School Bangkok principal pens a very special book. I hope you will read the review. This is a powerful read.
John and I will definitely take the time to read “We Know How This Ends.”
All the best,
Shelley and John
Bruce,
For quite some time I’ve followed your journey with ALS. And when I read your thoughts I also thought about the influence you had on my career. You were one of the first people I talked to at St Thomas when I was considering graduate coursework. Your words of encouragement at that time and later when you were my instructor meant a lot to me. And after all, who else would sing a refrain from Jimi Hendrix about Joe and a gun when he saw me? 🙂
So thank you, again, for all you’ve done for me, countless other students, and all the others whose lives you touched.
Dear Dean Kramer, I know you passed on few years ago. I was one of your favored students. I am just passing by to say: yes, I finished the doctoral work with flying colors, and to thank you for being part of that success. Your family already knew that you were a special professor. I am just here to affirm that. Blessings to all members of the Kramer family and our friends out there!
Congratulations on your success. I know that Bruce would be so proud of your accomplishments. I am remembering him, especially today, on this second anniversary of his death. Thank you for your kind words. He was a special teacher and taught me so much as well.
Sincerely,
Evelyn Emerson Kramer