Picture Perfect

Almost to the day that I turned 50, I experienced a phenomenon that many of my older and wiser friends easily recognized. I would get up in the morning, look in the mirror and wonder, “Who is that old man staring back at me?” Or I would be walking by a bank of windows or some other reflective surface, and I would catch a glimpse of myself and not recognize the person looking back, as me. As I have continued to age, this experience has only continued to heighten. You might interpret my nonrecognition as narcissistic, and I guess I wouldn’t blame you if you did. Yet, I believe something instructive exists in whether or not we fully recognize our physical selves. I had this experience recently when I downloaded pictures from a small trip we made to Chicago. There was one picture in particular that, when it came up on the computer, made me stop and wonder if that was really me.

We spent our first day at Millennium Park. Chicago has a well-developed park system along the lake, but when Millennium Park was built, it was highly controversial due to its cost and location – a park on some of the most valuable land in downtown Chicago. Now, nearly 10 years after its opening, it is a place of energy and fun and wonderful amenities enjoyed by thousands of people every day, even in the winter. We spent almost 2 hours listening to the Grant Park Orchestra rehearsing an upcoming performance of the Shostakovich Fifth Symphony, we enjoyed bizarre sculptures, and no visit is complete without hanging around the great fountain that projects pictures of faces between its two monoliths, children and adults splashing in its puddles and standing under its bubbling waters. The whole park is meant to be interactive.

The day, lovely and sunny and cool for July, invited us to linger in the park, enjoying its beauty, recording the occasion with lots of pictures. Toward the entrance of the park, we stopped for the picture below – Evelyn bending down to be at my height, me in the wheelchair, crooked, Buddha -bellied, hands tired from steering. I describe this in such terms because for the first time in a long time, I was surprised at my lack of recognition that it was me in the picture. Something about the picture projected what I think of as ALS posture – a picture that my subconscious has always seen in others, but not in me. It broke through my denial spilling waves of cognitive dissonance between the body I have, the person I am, and the way I see myself. Suddenly I saw myself with other’s eyes, and all of those old feelings about disability and deniability came rushing back as if I realized my disabled condition for the first time all over again.


I guess I really am a TAB at heart. I just can’t help it.

It was the circling gyre all over again – a point on the path of dis ease that I thought I had put behind me – only to spiral around to a deeper (or perhaps more superficial) interpretation of that same event. I thought that I had reached some semblance of acceptance, where this physical body is what it is, and where my own self worth is not a byproduct of physical capacity’s superficial interpretation. You can imagine how surprised I was, not just by the picture, but by this over-the-top reaction of shock and denial.

Usually I have my head around these things, and I am able to live within my disability with a pretty healthy attitude, but seeing that picture put me right back into the denial I had experienced when my ALS first began. And associated with such denial is an unhealthy self-esteem tied up in physical projection. I questioned whether I deserved the love and attention of my family and my friends because, after all I was not whole, I was not well, I was ALS personified – scoliosis, gut protruding, wheelchair – bound, muscles deteriorating. Not a pretty sight.

All of this from one picture? Eventually, I was able to find stasis, harmony – a place where I could accept that it is just my body, and the space that I occupy is far greater than the capability and capacity this body projects.

That harmony was brought home to me this past weekend with the birth of our first granddaughter. To say that I am over the top ecstatic, in love, sappy, dewy – eyed, wowed, totally into this tiny human being would be an understatement, and I am blown away by these feelings. Hypatia, all 72 hours of her, is the mirror in which I suddenly see the real projection.

She is, in my mind, perfection.

Before her daddy came into our lives, I wondered if I would have the emotional space for a son or daughter. Would I have enough love for his mother and him? He answered that question the minute he was born, and I realized that love’s space had expanded and there was more love to go around than I knew what to do with. When her uncle was born, I suddenly realized that this loving space exponentially multiplies so that no matter how many occupy its realm, there is always more love to give. When my sons introduced me to the women that are now their wives, that space opened up again, projecting out and underscoring what I had come to learn about love in space even to this day.

And now, this tiny three-day-old beauty who follows conversations back and forth, craning her neck when her daddy speaks, contemplating with the wisdom in her face that only a newborn possesses, has completely stolen my heart, making me reconsider that man with ALS whose picture was taken in Millennium Park. Her birth was an epiphany, a realization that often the person we think we are is not reflected in the physical self we believe we project.

One of the most overused terms of leadership theory is the term “transformative.” When it was first proposed, transformative was in direct opposition to transactional, implying an experience possessing tremendous significance. Now, I have reached the point where I avoid the term as best I can, because it is applied equally to events ranging from putting up new signage in a building, to rolling out a new advertising campaign, to completely changing the culture of an institution caught in the ruts of its own history. For me, transformative has lost its significance.

Today, I must break this self – imposed rule of usage, for I have been transformed.

I now look at the picture of the man in Millennium Park, and I realize he is waiting, waiting for something that will transform his outlook, reminding him that dis ease is more than ALS. I now look at the picture of that man and I see love waiting to pour out on a tiny, helpless, long awaited babe. I now look at the picture, and I don’t see ALS at all. I just see me – heart open to the perfection and possibility of my beautiful Hypatia.

Suddenly, I believe we are both picture-perfect in our possibilities.



22 thoughts on “Picture Perfect

  1. How wonderful for all of you – thank you for sharing this most personal and joyous occasion. You are truly blessed, dear friend.

  2. Oh dear friend, yes! Yes to the change that only that tiny bundle could bring, and to all the love she’ll have from you. I tried to tell you but it’s just so hard to imagine till you’re there. So very happy for you!

    • Thanking Jayne for expressing exactly what I am feeling. Congratulations on your beautiful, transformative granddaughter.

  3. Sooo happy for you to experience the miracle of birth of your children’s children! It truly is a God-given gift to we grandparents aka Gram and Papa in our family circle. I pray for you morning and evening, Dr Bruce, as I realize I am one of many holding you before our God!

  4. Such a gift of life she is, a beauty who has proven love’s depth and heart’s width! Congratulations to you, Ev, and the new parents!

  5. Another beautiful piece, Bruce! As a former baby nurse, I still find nothing more miraculous than a newborn baby. This, and music, are to me the most real and touching ways that I feel God’s presence. I am so happy that Hypatia has arrived safely and that she is in your and Ev’s lives. What a thrill! Thanks for writing!

  6. Our hearts are over-flowing for you and Ev as you share in Hypatia’s arrival and marvelous future! Thanks for sharing.

  7. Thanks again PALS for the perspective! It is by sharing with each other on this journey that we grow. Big smiles at the reflection and Buddha belly. My grandson calls it grandpa’s “12 pack.”

  8. I’m impressed with your research of the horrific cost over-runs of the park! The pic of you and the new kid is precious. One of your best essays, Kite.

  9. Thank you, Bruce, for sharing. I am deeply touched. I now have 2 grand-daughters of my own and am amazed by the capacity they have to help me connect with my best self. Congratulations!

  10. Thank you Bruce for these wonderful insights. What is real and what is ideal have to duke it out, it seems. Love how you describe this. Hugs to you and Ev.

    Sent from my iPad

  11. Congratulations Bruce & Ev!! Isn’t it amazing how your love for your child or a your grandchild once they are born, is multiplied rather than being divided into smaller pieces.??? Who would have guessed how much love a parent or grandparent is able to manufacture.We have found it to be limitless.

    God bless you both, Alice & Don

  12. I had a dream about you last night. Let me explain. In the spring of 2012 you spoke to the U of MN’s Medical Neuroscience class (I am a PT student) and I have followed your story since, through MPR and your blog. Last night my toddler woke up crying in the middle of the night, so I went to his room to give him water and a kiss and to tuck him back into bed. As I was falling asleep again or maybe half awake, I saw you walking towards me down the hall at the U of MN and turning a corner. It was 2-3 seconds at the most, but for some reason it shocked me and I woke up, heart pounding. I have never seen you walk before and I don’t know why my brain would invent that image for me. But, it made me hope that you are able to find some freedom in your dreams and perhaps do things that your body won’t let you do any more.
    Thank you for your strength and for sharing your journey.

  13. Bruce,

    I think of you often and yet write only now. I have read entries in your blog and heard your voice on MPR. Gratefully, stumbling onto your voice on the radio recently finally led to me to reach out.

    Many of your posts and words have touched me: your reflections on biking that encourage me in head winds; your reference to Francis Cabrel whose song “C’est Ecrit” carried me through loneliness traveling alone in Europe (didn’t know we had him in common); your classroom presence remains part of my pantheon of benevolent judges, watching over my teaching.

    I am grateful for your voice in my education and in my life now. Something – maybe many things – in a recent piece of my own writing reminds me of you. If reading a bit of poetry appeals to you, please let me know how to send it along as an attachment, or deliver the chapbook as a hardcopy.

    Even if my writing does not meet your eyes, it moved me to express myself to you in this comment. I hope seeing my name on your blog elicits a grin, or even a smirk.

    Thanks for sharing yourself Bruce.

    Be peace,

    Mike Klein

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