Christmas Letter in June

Dear friends,

I have not written a blog entry for two months, the longest period of time since I began writing in March 2011. Just as writing is tremendously informative, not writing can also speak in waves, and so I thought I had better give an update just so you wouldn’t think I had died. As I think you are aware, I have continued to write as a way of keeping my wonderful network of friends updated as to how things are going, how ALS is treating me, how my family is doing. And even now I want to give you that kind of update. But as you know, writing for me has also been deeply therapeutic, and that kind of healing comes with a cost. It takes a great till of energy to turn the everyday meaning of something so ordinary as the progression a disease on its head. The ability to do so has been one of the keys to what I believe could have been devastating. But I have reached the point in my progression where I only have so much energy, and I have reached a place in my thinking where I feel the need to summarize, to look back on this opus and to make sense of what it might mean more fully.

So I guess my first piece of news is that in collaboration with the very talented Cathy Wurzer, we have been offered a book contract based in these writings and the 25 stories that she has broadcast on Minnesota Public Radio. My plan is to finish the book this summer and then return to blogging. There are possibilities in such a plan, but I also know that the stars must align just so, ethers must conflagrate just so, and I must conserve precious energy that is so fleeting in order to realize this project. This is easier said than done.

My care needs have increased to the point where I am never alone. For the past semester, Evelyn has worked a 75% contract. This was in response to the fact that in the fall, she fell ill, contracted pneumonia, and never really could shake being sick. Her district very compassionately worked with us to find another teacher with whom she could split her responsibilities. The needs of a full-time job, coupled with the responsibilities of being a full-time caretaker can really wear a person out, and we both agree she is better with reduced teaching load. And of course, I will take every minute that I can get with her so I am the better for it as well. I continue to be well cared for by a combination of personal care assistants and volunteer friends, who also remove some burden from Evelyn. Their commitment and skillful care combined with the fact that we genuinely like each other makes this loss of independence much easier to handle.

Even though I am retired on disability, I have continued to think academically. For the past year, my dear friend Ernestine Enomoto and I have been working on a second addition of our 2007 leadership ethics book, Leading through the Quagmire…. With the help of our friends Deb and Sharon, we have greatly expanded the book and now await its publication, hopefully next month under a new title, Leading Ethically in Schools and Other Organizations. It was wonderful to work with Ernestine again, and I received tremendous support from my friend Jeanine who became my hands as I sought to fulfill my responsibility to the writing. Adding the chapters that Deb and Sharon penned was a real bonus.

After my wheelchair accident in April, the realization that I am down to one usable knuckle for driving the chair has become painfully obvious. I am now using what is known as a micro driver for my chair, and this has returned some driving ability to me. Currently there are two people who are comfortable using the attendant control on my wheelchair, but we are hoping that number will increase in the near future. In the meantime, we now have a manual chair as a supplement for those who are uncomfortable with operating my power wheelchair, and hopefully this will allow me to get out a little more.

My progression has now reached a point where I must take great care when I eat. A choking incident that took a very long time to clear was just the latest signal as to just how I must continue to embrace ALS. At the same time, my ability to speak with presence has finally dropped away. I speak softly, become tired with speech, yet I am totally dependent on speech recognition for writing and interface with my environment. In the next couple of weeks, I will again try to work with eye gaze technology. Eye gaze requires even more patience than speech recognition in order to make it work. Those who have mastered it have my deepest respect. I see it at first as a way to save my voice. For example, if I can turn the pages of the current book I am reading using this technology, it is one less use of the voice. If I can read the New York Times with this technology, it is one less stressor, and I can conserve my vocal use for writing and speaking.

To better support my breathing, I am now using BiPAP at night. So far, it is going well. It leaves me with a little bit more energy, and I must admit that the feeling of full breath is very pleasant. Of course, my competitive nature hates the fact that I have just lost four points on the ALS Functional Rating Scale, but I find solace in quoting Kurt Vonnegut. “So it goes.” And I have to say that when I combine the BiPAP with the diaphragmatic pacing system, the feeling of breath is wonderful.

I look at the news above and realize that for the able-bodied, such news might seem just a little horrifying. Would you be reassured to know that once I made the decision to embrace my condition, to learn its lessons, to cry when it seemed appropriate, and to laugh whenever I could, the horror dissipated? I recognize just how lucky I am. In spite of the fact that I know how this ends and that it ends much sooner than I would have liked, I have been granted great gifts, phenomenal love, faith that has not left me, a family that only cares for me more and more, and of course the gift of finding a one true love. All of this is to say that like life, ALS is far more complicated than most of us are willing to see.

I continue to practice yoga, and now try to pen a meditation about my practice as a person with disabilities once a week. This is writing to which I commit, because it helps me in the discipline that yoga has brought to my life. I will never be able to fully or adequately thank my teachers at Mind Body Solutions, but they have assured me that gratitude flows two ways. In addition, I have developed deep friendships so unlooked for yet so soul feeding. One of the lessons of ALS is that if you wish to live fully until you die, you have no time to waste in meaningless conversation. You have to get to the dance right away. I am remarkably blessed in this regard, and it has helped me to accept the choices that dis ease foists upon me. I have been granted a richness in life for which there is no complaint. I accept what I have been given, and I am grateful for it.

I probably will not be writing much in the blog for the next couple of months. That being said, I can see where I might require advice as I write body and soul in a book. At the very least, I hope you will grant me and my family your best wishes and know how much it means to me that you choose to spend your precious time with me in this life spiral.

It is the greatest privilege.

Yours in ALS,

Bruce

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20 thoughts on “Christmas Letter in June

  1. Hi Bruce,

    I’m so happy to hear you will be publishing a book! Congratulations, you are a wonderful writer and I look forward to reading it. Thanks also for the update.

  2. Hi Bruce:
    As always, you continue to be a true inspiration. Thank you for the communication demonstrating the sheer determination of the man that has taught us so much. Even through illness, you are modeling the tenacity of a leader. Thank you for using your resources to finish the important work that will continue to teach leasdership skills.
    Cheryl Pete, University of St. Thomas, 2006

  3. As always and remarkably, you once again care for us and try to diminish our horror and sorrow. I guess I am not surprised that a publisher has seen what a beautiful gem you and Cathy have been creating together and has offered you a contract. I wish you all the best as you focus your strength toward that end. And bless you and Ev!

  4. I miss coming to visit you, Bruce. I still have some lingering Lyme Disease symptoms which are making it harder to get around. But I think of you daily and keep you in my prayers. What a wonderful opportunity for you and Cathy Wurzer, and such a great and future gift to many who haven’t yet read your powerful stories. Your ethics course was the stuff of legend on campus and I’m pleased to see there’s a book forthcoming there, too. How wonderful that you can now spend more time with Evelyn too. Your choices at that fork in the ALS road have made all the difference. Good bless! Tom

  5. Bruce, you always give us insight into ALS. Your insight will be helpful to both the caregiver and the patient. I look forward to all of your books and writings to come.

    Sent from Gretchen’s iPhone

    >

  6. Your writing always helps me refocus on what matters. I’m so glad that these writings will be gathered for an even larger audience. And tenacity (thanks Cheryl Pete) is just one of the qualities I love & admire in you. Hugs from the humidity of N.O.

  7. I have 6 men I pray for nearly every day and Dr Bruce, you are one of the 6! You are among great company including my dear spouse, my brother, a very close friend who just had a kidney transplsnt, and 2 brothers in law, one with Parkinson’s disease and the other with matastisized cancer. All are Godly men who have purpose and intention in their slice of the world. Thank you for once again sharing your joy, even in your suffering. It is a great lesson for me!

  8. Bruce I absolutely adore you and Ev. I think of both of you frequently. I have started a new job and am often seeing people with ALS. You continue to amaze me! Your spirit, your love for your family and your desire to continue to teach. I have learned so much from you not only about ALS but life. Thank you from the bottom of my heart for the gifts of your words and experiences they help me in my own personal life but also in my work life. You will always be an inspiration to me. If you ever need other friends to help out and provide sometime for Ev I would be honored to come and help you in any way I could, Otherwise keep up your writing and speaking interviews I learn so much and treasure the times that I can learn from you, You’re a remarkable man and I am honored to know you and if I can do ANYTHING for you I would be honored,

  9. Thank you for sharing your thoughts, meditations and love of life. I discovered your blog around the same time I experienced a personal tragedy & as an elementary teacher, practicing Catholic, yoga teacher and athlete, your words of wisdom have offered me strength and hope. God bless you on this journey. Much love to you and all of those who support you.

  10. It is good to hear from you again, I have missed your writings. I am glad to hear about your book contract. You are a gifted writer, and your words reach out and touch many, myself included. Blessings to you and Ev as you navigate this next part of the journey. Pat and I surround you with prayer.
    Fondly,
    Kathy

  11. Your blog entries are such a refreshing arrival to my inbox. I appreciate your candor and honesty about what your journey is. I love this… “embrace my condition, to learn its lessons, to cry when it seemed appropriate, and to laugh whenever I could, the horror dissipated.” I will try to remember that on this journey with my son (who has a mitochondrial disease). I think we live that way, but sometimes I forget to be thankful for the things we’ve learned. It does not seem enough to say, but thank you for sharing your journey. I look forward to reading your book.

  12. Hi Bruce,

    I was so pleased to find your blog. You and Evie are in my daily prayers, and your two month absence concerned me. But, you, wonder man, during this time you have a book deal with Cathy Wurzer, and also a writing assignment from St. Thomas! Wonderful news. I’m sure being productive inspite of your limitations is terrifically inspiring to you. Incidentally, Riney and I sat in the row behind Cathy Wurzer at Good Sam when you gave the sermon. She wiped her eyes the entire time. What a beautiful bond you have!
    Godspeed with your energy level in accomplishing your writings, Bruce. And, Evie, you are a shining example for all of our wives. God bless. Joanie Goehl

  13. Thank you for the update, Bruce. Your decision to embrace ALS is astonishing, yet because of your shared introspection I can see how much better it is than the alternative. The horror dissipated because you faced it head on and stared it down. You have redefined brave and have developed your gift with intropersonal skills to a high art. I’ve learned so much from your blog. Thank you for sharing your journey. I look forward to reading your book and pray for you the strength you and Ev need. I hope I’ll read her story someday, too. God bless you both.
    Julia

  14. Bruce – You are impressive. The way you have handled this situation is inspiring – but the insight on life you are sharing is even more impressive. you need to know your work is impactful – as it is so hard for you to accomplish – it is worth the effort!

    Thank you.

  15. For a moment I thought I missed your blog but then I realized that I miss you. You are a marvel and like many others I am filled with gratitude to have this window into your life. Thank you for that and for just being you. Do what you need to do to keep it ‘Bruce-y’ and let us know if we can help.

  16. Bruce Your messages of love and understanding continue to inspire me to love living and teaching and have conveyed your narratives to mutual friends in international schools around the world

  17. Bruce,
    I think of you and your family often. Thank you for your blog. Your words and actions are amazing examples of who you are as a person.

  18. Bruce,
    Thank you, thank you for this blog and for sharing your experience of life, love and ALS. I visit, read and listen now and again, and every time I do, I feel touched and so grateful to you. My father, who was diagnosed with ALS nearly 20 years ago, was not as forthcoming about his physical experience, and not inclined to reflect, but your generosity has allowed me to open a window and understand a little more–about how to live, the meaning of commitment, honesty and love.

  19. Hi Dr. Kramer,
    I just ran across your blog via looking for something on MPR. I am not sure if you remember me but you were my Advisor at UST for my Educ Spec program. To say I am stunned to read all of this is an understatement. You were a driving force in getting me through my program, all the while being one of the kindest and gentlest souls I have met. Your blog is so real and inspiring. I got to be an Asst Principal for awhile but haven’t made it to Principal, due to my own diagnosis of Fibromyalgia. A much less life changing diagnosis than yours, to be sure. But, the stress of the Admin job is too much for my body to handle. I am teaching 2nd grade and am very happy in that role. I finally accepted that it is what is meant to be for now. I had great admiration for you at UST and have even more now as I read your blog. I was recently married and have been reading/ sharing your posts with my husband. We are both humbled by your bravery and solace. Your granddaughter is beautiful. I will stay in touch. I am thrilled you are putting this in a book. Blessings…
    Pam Zielske-Stavrum

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