The concept and reality of acting as a primary caregiver had never entered my imagination. But in 1965, at nineteen years of age, the truth of this experience swiftly hijacked my life: my eighteen-year-old bride was diagnosed with cancer.
My First Awakening
I remember the day we received the diagnosis at NYU hospital. While waiting in the solarium for the doctor I watched charcoal clouds glide over office buildings in the ebb of a sunset. City lights began to twinkle in the Manhattan skyline. The room smelled of rubbing alcohol and institutional food. Girls with red-striped pinafores over starched uniforms were carrying fiberglass trays.
There was a sense of being frozen in time. All of my sensory input was heightened, while at the same time, I had completely lost touch with where I was. My eyes were glazing; I nearly forgot my name.
Dr. Wallace, a self-assured specialist invited Sheila’s mom Olga and me into a small office space just off the solarium. We were told that Sheila needed to be admitted immediately.
“Sheila has a rare form of cancer in the leg bone,” he started, his expression earnest. “It’s called Ewing sarcoma” He took a pause and looked at each of us before saying, “We’re going to have to amputate Sheila’s leg above the knee. And we have to do the surgery as soon as possible.”
He shook my hand and continued to speak with Olga while I walked away. He could probably see that I was holding back an urge to just keel over. I’ve discovered that for most caregivers there is such a time of feeling crushed, of a traumatic inability to face this reckoning.
Until Sheila’s passing two years later I was consumed—sometimes consciously, mostly not—by a racy feeling emanating from my stomach and then taking over my whole inner condition. She always wanted me, not Olga, to keep her company and tend to her needs which where expanding day by day. Going through the amputation process, her often hysterical terrors, being fitted for the prosthetic, phantom pains long after the leg was gone, the chemo, needing to be carried to the bathroom numerous times during the night.
Living in Two Realities, The Anguish
Simultaneous to all of this I was attending to my new job in advertising, a dream come true. I had to show up and do the best job I could. I would go home at lunchtime to see if I could get her to eat something, as only I was allowed this responsibility. My employer showed extraordinary compassion—the constant having to leave to go with Sheila to a doctor’s appointment or the intermittent crises I needed to attend to immediately.
I was living in two incompatible realities. Later I identified this as an often-overlooked suffering of the caregiver. One is the everyday personal existence—self-care, professional responsibilities, social engagement. The other is the intimate world of the sick and fragile loved one, with its ever-changing demands, along with full body/mind consumption.
I discovered that I could bounce between the two awkwardly, yet they never felt integrated. These two aspects of my being suffered greatly even at the thought of bringing them together—a skill unavailable to me until years later. I’d like to share here what I learned.
After Sheila passed I went through many changes, some self-destructive (my unhealed trauma activation), some not. One of the more positive changes was the acceptance that my primary physical and affectional preference was for men, not women as I had tried to pretend. Back then homosexuality was classified as a mental illness—who would want that label? But I progressed well in this area, until the AIDS pandemic of the 1980s.
A Conscious Study in Caregiving
It was during that decade that caregiving became the unexpected focus of my experience and study. From the first death of a close friend in 1981 (from what was then a yet-to-be-defined affliction), it was relentless. It was one friend after another. Then came my own diagnosis (with accompanying cancers).
After a miraculous remission in 1985, it was my partner and caregiver Gil who was diagnosed. From this time until he passed in 1988, caregiving was not only my daily role, but also a keen course of study.
We were all falling apart. Every day brought visits to the ill, to hospitals and memorial services. It was a decade of tears. If you weren’t ill, you were surely caregiving. Nothing seemed more urgent than helping our community and each other best resource ourselves while caregiving.
Resourcing Ourselves: Three Tangible Shifts
What lies behind us and what lies before us are small
matters compared to what lies within us.
—Ralph Waldo Emerson
From the depths of caregiving and assimilated with recent personal experience, twenty-seven years of professional counseling experience and what I’ve come to call Focalizing, I’ve culled these three tangible resources.
- Discover Source Energy.
Source Energy refers to the life-force emanating through all things. Every one of us is a manifestation of this energy. We can best discover and expand access to Source through body-grounding techniques such as meditation or yoga.
At the end of a yoga session, you may experience an inner and outer calmness. With a slight shift in awareness you may discover this in-the-moment experience as Source Energy expressing itself through your body. Yoga accesses something more and bigger than the relief of stress .
With this perceptive shift you will soon discover that not only will this Energy expand but also you will find yourself coming from this Source experience. When you come from it in caregiving (and life) your persona yields to this larger, in-touch way of being. It can be a way to side-step useless entanglements and build in yourself the capacity of space giving.
Body grounding can also be accomplished in a few minutes by those without other mindfulness practices.
First, find a private space. Then sit or lay down, with the intention of attaining an expanded awareness of Source Energy. Close your eyes to avoid visual distraction. Bring the focus of your attention to the back part of your body and notice any places you can feel connecting with whatever it is holding you up.
Bring attention to the soles of your feet. Notice any sensations of contact between your feet and the floor. Notice gravity. If you find your mind coming in with chatter (or “head noise”) respectfully set this interruption aside, asking it to allow your return to the body, knowing that you are larger than your mind. You may have to do this several times until your mind gets used to it and buys-in to the process.
Then after a few minutes, shift awareness to your natural breathing. Observe the in and out of it. Notice that it takes no conscious effort: it knows how to breathe itself. Let each breath be the perfect one in this moment. You may want to place your hands over your heart. Begin to notice an amplification of a sense of inner strength and mild elation.
Next, as you allow yourself to notice the body grounded and breathing, invite your wondrous imagination to surface a meaningful moment in your life, one of those experiences when life felt good and right, or a time when you felt love or when you were giving love. When the image arises, allow it time to develop in your mind’s eye.
You should begin to notice the physical surroundings of that meaningful moment—smells, colors, textures of light, breezes, etc. You are inviting memories living in your body to make connection with that image in your mind’s eye.
At this point bring the focus of attention to your whole being in this moment. Generally you will notice a calm openness that is full-bodied. You have found yourself momentarily grounded in the full experience of Source Energy. Hang out there a bit. Our body tends to grow toward what feels good, so let it just be for a while. Allow your body and bones welcome and even celebrate this moment.
Every time you repeat this exercise you will notice a faster, more direct route to Source with its openness, calm and heightened awareness of who you are beyond your physical identity. The more you do this, the more accessible Source will be. You will soon find yourself able to consciously come to your caregiving experiences from this way of being.
You may be surprised at how this mysteriously occurs. The liberating sense of Source Energy is truly larger than your ego, physical identity and painful attachments.
Drop Conditioned Thinking
Your enhanced access to Source will allow you to let go of conditioned thinking—all the shoulds and should-nots to which your mind has been exposed, the endless internal conflicts that drain one in caregiving. By coming more and more from Source Energy you will discover an ability to transcend previous conditioning (often outdated, or just wrong for current situation) and discover a fresh, new intelligence fed to you by that Energy.
Such in-the-moment guidance can never lead you astray because it encompasses everything beyond the mind’s individual conditioning. The more you trust it, the sooner it will be at your disposal. The exhausting inner conflict will dissolve. You will know what to do, and when, with certainty and a grounded, clear sense of purpose.
- Create Space from Source Energy.
After repeating your conscious, intended exercises to invoke Source Energy in this way, you will notice an enhanced ability to let positive patterns come forth, and to drop draining entanglements within yourself and with those you care for.
Once you experience the spacious world we actually inhabit you can then become a “space-giver.” When you are able to give space to your ailing loved one you enter a subtle and more expansive time of “being together.”
No longer responsible for your loved one’s life, you surrender that burden, instead consenting to a new role as space-giver. No rights, no wrongs, just being in-the-moment with the one who needs you, with whatever surfaces in that time/space.
The relationship’s dynamics will be transformed. With each encounter thereafter a grace and lightness will enter the room. In such space-giver mode the notion of time collapses, allowing perception of deep imagery. This is often a time when mysterious healing moments occur. The experience will follow you after the ”being with,” offering expansive grace to your other life.
The best way to retain this heightened perception of caregiving is by expressing gratitude for the transformed dynamic each time you notice the weight lifted. Gratitude grounds the experience and acts like a fertilizer for growing new ways of caregiving, allowing them—and you—to flourish.
These three simple tools have helped my numerous private clients and me in my twenty-eight years of private practice. I invite you to explore them and experience caregiving as a rich and spirited gift bestowed on you.