Diminish

“There’s a darkness upon me that’s covered in light.” –Seth Avett

In the course of my dis ease journey, I have tried to be honest about my experiences both good and bad, days of darkness and days of light, pleasant breezes and rainstorms. I say “tried” because in all honesty, my truthiness score is probably in the 90% range, mostly due to the omission of certain facts and details and not by speaking actual falsehoods. So, I must now admit to you that the last three months have been more darkness than light, more rain storm then pleasant breeze. Don’t get me wrong, I have had moments of supreme happiness, wonderful times with family and friends, but as I feel the physical effects of ALS compounding upon themselves, as I am more and more aware of my inability to mitigate the symptoms in any way that is more than palliative, I recognize an emotional hood, often dark and debilitating, pulled over my vision. And even on a sunny January day, life can feel grayish, like the yellowed air of a city that over relies on coal to cook and heat and light.

I have never bought into Cartesian mind-body duality, so the overall effect of this gritty sulfuric vision is  integrated–psychological, emotional, social, physical, always physical. I suppose my friends in the counseling world would say that perhaps I am depressed. But this integrated effect is not depression. I think there is a better word, a better way to frame this holistic overarching ALS filtered life. I prefer to think of it as diminished. In spite of all the emotional, social, intellectual joy that I feel, the fact is that the physical overwhelms, playing a cruel trump card.

Parenthetically, my former administrative assistant Mavis would probably remind me that I often suffered the symptoms of seasonal affective disorder at this time of year, even before my ALS. She would ask me, “Why do you think it isn’t SAD?  Hmmm?”

Taking stock of the physical, there is much that reflects diminishment.

Sleep is inconsistent, mostly due to the fact that I must lie on my back, unable to move unless Ev moves me. This results in searing, burning sensations in my feet and psychological feelings of being trapped, unable to mitigate the pain.  If I can sleep through this it is a good thing, but there is always the chance that a bad night is ahead:  Diminishment.

My torso and my neck have weakened to the point where in the evening I must be very careful about the angle of my chair or my head will tip forward, and I will be unable to raise it.  And my legs are now completely useless. I have no physical capability that would allow me to meaningfully use my legs or feet in any way:  Diminishment.

My breathing is also affected. I am not able to cough or sneeze with any authority. I am unable to force air out of my lungs in a sudden fashion. Likewise I am unable to get the breath support underneath my voice that would allow me to project in a meaningful way. I yawn often, and I can nod off at the drop of the hat. My energy is way down:  Diminishment.

The drug trial in which I participated for the past 18 months has been declared a failure, so we still have only one drug that has shown any efficacy toward treatment of ALS. Forgive the pun, but this one was a hard pill to swallow. Of the 3 to 5 most promising treatments in testing, two look to be washed out and a third lacks the financial resources to take to phase 3. It is physically disappointing and psychologically frustrating:  Diminishment.

I no longer type over any length of time. This blog is my first totally dictated, including most of the editing. I’m sorry for that, as the dictated voice sounds so different to me from the one that emerged from my hands just a few short months ago. But with typing, a single paragraph can take hours, and neither my hands nor my arms can functionally maintain the distance from the keyboard that is required for any meaningful time devoted to the task:  Diminishment.

My arm and hand weakness means that within the past week Ev and my caregivers have actually begun to feed me full-time. I am not looking forward to communicating this fact to my lunchtime friends. They come so cheerful and hopeful, and knowing that I will have to communicate my inability to feed myself, feels so disappointing to me.  Usually, I cannot reach my head or legs to scratch–I can feel the itch, just not do anything about it:  Diminishment.

Yet, diminishment is not depression, overarching weakness is not an overwhelming loss of strength, drugs are only the first line of treatment, and I am not dead yet.  There are stabs of remarkable lightness, underscored by the lights of family, friends, and breath.

At the encouragement of friends and family I started adaptive yoga the day after Thanksgiving, first on Fridays, and now Monday evenings. Adaptive yoga allows a person with disability to find centeredness through restorative and strengthening poses and breathing, always breathing.  During each session, the darkness lifts for a few moments, my sense of breath increases, the compacted feeling that comes from progressive physical loss and over-reliance on mechanical wonders such as power chairs mitigates into light, reaching out beyond the confinement, and even though I find myself conscious of another loss and another each week and each, I am also aware of divinity within, each of us communing through Holy Spirit in breath and pose and selfless friends and teachers lifting us into divine spaces.  Invariably, joy and tears combine for me each session.

And then there is church. I go to sing the old songs in ways that will never approach my old ways. I go to contemplate and to pray and to meditate and to think upon the great metaphysical questions. I go to greet friends and to receive kisses and hugs and smiles and yes, a little bit of cooperative mourning from believers and curmudgeons alike.  A smile from one of my former choir members is always a shaft of sunlight in the roiling clouded darkness.  And like yoga, I go to church to mix laughter with tears.

And when my family descends upon our condo for cooking, filling the place with redolent spice and roasted garlic poblano smells, meats and wine and beers and passion–passion for eating and passion for each other–I am filled.  Animated discussions, laughing loving appreciation for music, awe for artistry, or irritated disgust with NYT columnists, blowing their arguments to smithereens, lift me into tears and life over ALS.  Even when we just kick back with a movie or a game, all I need is the being of family.

All of this is to say that I get Seth Avett’s profundity.  The Avett Brothers embraced darkness and light through their own support of a colleague and friend until he died from ALS.

If you want to call this depression, please know that I cannot. For me, it is life ordinary, pulling back and pulling in of life lived large.  And even though it is dark in the space, I know that light exists, and that there will still be times where my spirit will soar. It is hard not to think about death and leaving and loss and grief and pain. As I diminish, as I wind down, as I slowly circle back, how could it be otherwise?

See, it is just living until I die, or the last 10% of my truthiness.

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24 thoughts on “Diminish

  1. Bruce,
    We’ve never met but I began to follow your blog after reading the beautiful article about you in the Fall 2012 St Thomas magazine. I think of you and pray for you as I go through my days. My prayer tonight is that you have a restful and comfortable night.
    Sincerely,
    Renee

  2. Dear Friend, you always give me so much to think about: “life lived large,” “being with family,” “living with loss and grief and pain.” I’m typing through tears – silly since you and yours are the ones dealing with the reality of “pulling back…the leaving and loss and grief and pain.” Please know I think of you often, keep you and Ev in my heart, and wish you peace as you face both the darkness and the light of this singular journey. Karen

  3. Bruce you are experiencing depth. A focus on what is true and central to humanity Physical diminishment facilitates spiritual and eternal depth. May it be so. Please always know so many of us are learning so much from your journey. We are grateful. Judy

    Sent from my iPhone Judith Miller

  4. Bruce, I happened upon your blog some months ago through sheer google luck. My brother-in-law has ALS and I am trying my best to understand and support both him and my sister. They have for the most part turned quiet and introverted, but your vivid and heartfelt ruminations have given me a modicum of insight. This has helped me connect with my sister, and she has recently opened up to me in a way she never has before.. It turns out that human experience is remarkably universal. So thank you from the bottom of my heart. Dave

  5. I cannot imagine the emotions you are experiencing. I cannot imagine how it must feel when a body that once used to spring out of bed to meet the morning refuses to move anymore. I cannot imagine how Ev feels, or David and Jon.
    Now, I regret all of the missed opportunities. I regret the missed conversations. Most of all, I miss you. I love you Bruce, you have always been an a role model for me and you will always be my big brother. You will always be the big brother who carried me on your shoulders to the pool because my legs were too little to keep up.

    Your baby brother,
    Andy

  6. This has been a post that somehow did not surprise me. But through the trouble-reading-this-to-Mike tears and the I-have-to-pray-more-specifically resolve I am so deeply appreciative. Through sharing your experience of diminution you are increasing so much for so many of us. You’re increasing our appreciation for the light around us which comes in so many forms, and especially increasing our understanding of what is truly important. We will take all that you can give and cherish it – try to really use it in our lives. Thanks again. WeloveyouBruceKramer.

  7. Bruce I was going to communicate with you. After I spoke again to Natalio my recently acquired helper/nurse, the gal from Brazil who told me that you are also in her patient load. However after having just read your most recent update and your description of ALS and what you’re going through, I can identify strongly with what you are expressing. It is almost as if you are reading my mind in the sense of the ups and downs of this disease. I want you to know that you’re not alone. After a year and a half of pursuing cardiology and pulmonology we finally got to the right Department–Neurology. So I was diagnosed in May of this year, but in fact I am starting my third year since onset of symptoms. I understand your disappointment with the drug trial that you were involved with. I was at the HCMC clinic yesterday and spoke about Dr. Tiryaki’s disappointment. I also was talking to them about the “QR” as some company pushing through the media of a rabbi and Jerusalem which I now think was a push just to sell or hide the stock. Anyway, I’ll come back at you again but what you wrote that I just read this morning compelled me to reach out now, taking a risk of sounding trite. I’ll just say Hang in there for now.

  8. Dr. Bruce, You are in my prayers. I just thought about you yesterday and saw this posting today. The 2.5 years you were my advisor, teacher and friend had and still have a profound affect on me professionally and personally. Why bad things happen to good people is such a mystery for humankind in general and particularly for believers in God and the redeeming power of Jesus Christ. I pray that the Lord will shower you with peace and comfort, both physically and spiritually and you are able to say, “Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.”
    Barbara DeMaster, UST past grad student

  9. Bruce,

    You’ve touched my heart and soul at a time in my life that invites deep reflection and humility. I recall one of our first meetings as new principals in Bangkok; you impressed me as a most introspective person and continue to do so with such powerful posts. I admire your courage and strength and am humbled by the manner in which you have embraced life and it’s lessons – always learning, peering, postulating, and on occasion, pontificating! Your intellectual prowess is potent, my friend and I appreciate every ounce of it.

    As you share your journey, each entry offers the opportunity to peel another layer of life’s onion off, revealing the “core” of what is meaningful, real, and mysterious. Your justaposition of all things physical and spiritual challenges one to capture the moment in time and appreciate all that life is while at the same time acknowledging the multiple thoughts and emotions associated with what’s to come – the mystery of life revealed! If St. Francis of Asissi’s prayer and faith rings true, you shall truly be consoled, understood and loved as well as received, pardoned, and born to eternal life in a most glorious way.

    God Bless You!

    Terry

  10. Always by your side (occasionally sleeping) I will be with you each step of the journey. Still more smiles than tears, still more jokes than complaints. Your glass is close to empty, but you still maintain your cup runneth over. I don’t know how you do it. My hero forever.

  11. Bruce, the best yet of your writings. Sad to read it, but it is real and gripping, shaking me like a great wind shakes a forest. Mary Ellen and I have you and Ev in our prayers and thoughts. ( How is it that men like us have a woman like them in our lives?) Love you both, Larry

  12. Yet even in dimishment you proceed with courage. Your presence and participation in our Good Sam breakfast meetings is so special and engaging. I love your actions and thinking…what fun. Thanks for sharing there, on your blogs, and in all your interactions, as you are and has been, with courage and just as you are. Larry

  13. Dear Bruce – keep you in our daily prayers. What an inspiring person you are. Kirsten told us about the Yoga – we are so blessed that Kirsten& Jon brought all of you into our lives. God Bless! Alice & Don

  14. Dear Bruce– Having watched my father deal so indepedently with ALS, I appreciate you sharing so much of your soul with us. My dad never let anyone in on what he went through. He literally closed the door to my mother so she could not hear his suffering at night and so he could leave us without intervention. It is ultimately how he left us- without intevention.
    I wish so much that you did not diminish. I am sorry that you must experience this. But, you give us all a little inspiration to live each of our days more meaningfully. Thanks for that.
    Thanks for your rock and roll spirit that compliments your love of more serious music. You affirm me. Rock on.

  15. Bruce, on Sunday, the minister talked about the importance of listening and asked us to think about who and what we are listening to. I immediately thought about you! Through your blog, I have been listening and learning. The Second Reading at the service was 1 Corinthians 12:1-11, Paul talks about spiritual gifts people have been blessed with. ” To each is given the manifestation of the Spirit for the common good. To one is given through the spirit the utterance of wisdom and to another the utterance of knowledge according to the same spirit…” again I thought of you and your Blog. I see you sharing with us Wisdom…gained and strengthen by the experience of dis-ease and I also see knowledge as you share with us your experience of ALS and your exploration of after-life existence. Thank you Bruce for sharing this knowledge and wisdom. It is indeed a gift! Blessing to you and Ev, Your colleague, Miriam

  16. Bruce, my wife (Denice Hougen) was diagnosed with ALS, Nov 8th, 2011, she died Jan 29th. She read your blog every week and said that you always expressed exactly how she felt. Your profundity was an inspiration to us both. She worked at the University here in Bellingham, WA, mostly loving being a mentor to the students. She left me a long list of people/organizations to thank after she died, you were at the top of the list.

    Regards,

    Joe Hougen

    Sent from my iPad

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