Students, friends and people who have read my writings know that I often refer to my first opening that led me to Zen as ‘losing my mind’ and ‘going sane.’ In Big Mind work, we also discover that the fear of ‘losing my mind’ is one of the great obstacles to realizing our true nature, a deeply rooted fear that prevents us from what Zen teachings point to as the key to enlightenment, relinquishment of our attachments, the most fundamental of which is our attachment to our identity, our mind.
I recently was privileged to be read this account over the phone by my partner, Charlotte. It was written by a colleague of hers and a friend of mine, William Swanson, an intern who works with participants in a program for elderly people with dementia. I found myself crying most of the way through it because it was so beautiful. In this day and age, when more of us are becoming aware of the prevalence of dementia and Alzheimer’s, his account of his experience offers both a compassionate insight into this feared and stigmatized condition, and an illuminating perspective on what we might call ‘losing our mind.’ With William’s permission, I would like to share it with you.
I Cannot Believe My Good Fortune
So…I started my internship in June at Care Link Elder Day Program here in Boulder. Participants, as they are called, are elders with a dementia diagnosis who gather for social time with others experiencing this new and unsolicited mindscape. Participant’s time spent at Care Link also provides their caretakers with much needed respite. The staff maintains a fun and friendly environment that promotes a lot of laughs between participants – and not a little flirtation! Everyone is kind and we have a good time.
From the moment I interviewed in March I have been struck by the comradery of these elders, the staff, and my supervisor, all who have made me feel welcome and all who have supported my work in every conceivable way. There is a daily staff of four, three co-directors, and my supervisor who comes in once a week to meet with me. As the only overtly therapeutic component on the team, my task has been to support the staff in their daily tasks, facilitate or co-facilitate group activities, and invite participants of my choosing to join me in a therapeutic relationship.
I now have eight participants who I work with individually as my therapeutic clients. Because of confidentiality, I am not allowed to post photos of any participants. But I sure wish I could so people would see these amazing souls who model what it means to age with grace and audacity. Each one has lived a stunning life (I’ve had the honor of reading their personal histories in their files) and each one is living a stunning life still. Past accomplishments include careers in astrophysics, seismology, New York City school district superintendent, social work, nursing, radio deejay, and haberdashery, just to name a few. Hobbies have included mountaineering in the Alps and Himalayas where nights were spend sleeping in a tent suspended from the cliff side. These people seize the day.
They also are adjusting to the fact that their minds are in a state of radical change defined mostly by short-term memory loss and a state of timelessness – hours, days, seasons, and years no longer present chronologically. But there are others factor as well such as images appearing they know are not real but which they cannot resist being drawn into. Much of our dialogue lacks a cohesive narrative – or any narrative at all – but instead is highly abstract where our relationship rests more in an energy exchange than in story.
It is particularly impactful that there are few people who can relate directly with these dynamics. Generally speaking, our culture does not prepare us to deal with entering into this mindscape whether it’s our mind or the mind of a loved one manifesting dementia. Social stigmas marginalize these individuals while family members struggle to relate to someone whose personality has shifted, in some cases to the point of seeming unrecognizable. There is deep shame in believing you have become a disappointment to the ones you love. Many chose not to disclose certain aspects of their experience in order to lessen their perceived burden on others, leading to deeper feelings of isolation and irrelevance.
But here’s the deal: there is wisdom in dementia. Poignancy emerges to a point where that which is non-essential is let go. The futility of clinging to that which is transient is replaced with the stunned silence of realizing that so much of what defines ordinary life is pure illusion. Though time is scrambled, time is of the essence because so little of it remains. Forget the names, the dates, the places. Don’t pester me with data, and away with your petty squabbles. What is your experience and how does it feel? Are you feeling pain? Tell me. I can hold it with you. Are you feeling confused? It’s okay. I’m confused every day. Are you in bliss? Express it. I have been there, too.
Two participants met at Care Link and discovered they had fought on the same battlefield in Germany during WW2, one on the German side, the other on the American side. Now they enjoy each other’s company over coffee and conversation.
Yesterday as I walked one of my clients back to the group in the main room, we passed one of the co-directors in the hall. I look at her and silently shook my head. When I came back down the hall she said, “Are you ok?” I looked her in the eye and replied, “I can’t believe I get to do this. I can’t believe my good fortune.” She said, “Oh!” and came in for a hug, “We are all so glad you are here. You are doing great work, William. Your clients are so lucky to have you. We all are.”
And so the mind of dementia is not unfamiliar to me and I can rest in it and move through its terrain. At times I feel like Virgil or perhaps even Beatrice. But then I realize that it’s me being escorted by my clients, those who are living literally in the mindscape of dementia, navigating its swirling levels and feeling its full force. Together we are making meaning by asking questions and sharing perceptions of its nature and purpose. We hold out possibilities for the things we cannot understand. We laugh, we cry, we do both simultaneously.
For me it all gift. I now know the population I want to work with as a future therapist. I don’t yet know how it will all unfold, but that’s just one lesson I have learned in this mindscape: I cannot know anything for sure and that’s okay. You simply move through the rooms, down the halls, and over the thresholds that appear. Someone will be there to greet you. Someone kind who wants to share your company, your support, and your insights. And who wants to have some fun while we’re at it.
Truly, I cannot believe my good fortune.