In New York City in the spring of 1987, at the age of 33, I was shell-shocked after being told by a doctor over the telephone that I was HIV positive. As was my habit, I went to my regular 12-step meeting and shared my devastating news with the group. Many have since told me that to do so was brave. It wasn't. I was desperate. I needed help. I wanted to live. I was told that there would be no viable treatment in my lifetime. I felt as if I'd been handed a death sentence and was desperate to find anything to save my life.
I wasn't alone, of course. There were other HIV-positive folks like me hanging out on the stoop after the meeting. Well, not exactly like me; they were men. I did meet a few positive women as time passed. They helped me feel less like a freak, knowing I wasn't the only woman on earth who had "the gay disease."
"I have the terminally hip disease!" I would joke. But I wasn't feeling funny at all. I was just trying to cope the best way I knew.
However, at that first meeting where I declared my status, there was one guy who came up to me with an upbeat smile. "Nothing is incurable!" he declared. "All the cures are within you. You just need to learn how to tap into them!"
I asked him, "How do you do that?"
He said, "I've been reading You Can Heal Your Life by Louise Hay. You've got to get it!"
At the time, I was actually living in Cambridge, Massachusetts, not far from a small spiritual bookstore in Harvard Square. I always felt transported back to the 1970s as I approached its red brick building with the dreamcatchers in the windows. Then I'd walk in and enter a New Age world of self-help books, angel cards, crystals, and psychic readings. It's where I found You Can Heal Your Life -- a paperback book with a rainbow heart on the cover.
A Pathway to Spiritual Healing
Reading Louise's book was easy. It was a simple blueprint for changing one's thinking and creating a different life experience, which I found empowering. It shifted me from feeling like a victim to taking responsibility for my part in things. For example, the book asked which of these two thoughts sounded most like you, the reader: "People are out to get me" or "Everyone is always helpful." My life improved as I felt happier and more connected to others in a compassionate, caring way.
That bookstore is where I also discovered cassette tapes with Louise Hay's guided meditations and affirmations, which I would listen to in my car -- or with my Walkman on, when Louise's soft, soothing voice would lull me to sleep with its encouraging messages:
"I am in the right place, at the right time, doing the right thing."
"Every thought we think is creating our future."
"I love and accept myself exactly as I am."
In truth, Louise Hay's affirmations coincided with the principles I was already learning in the 12-step program. So many in the recovering community were doing the same thing. It was part of my 11th-step work for peace of mind.
When my HIV-related anxiety would creep back in and I was "in dis-ease with myself," as Louise put it, I would say Louise's mantra: "It is only a thought and a thought can be changed." After all, went the thinking back when we thought ulcers were caused by stress, if you can create an ulcer by worrying, why not stop worrying and heal the ulcer?
Related: AIDS, Love and Desperation at the Louise Hay Ride
No Magic Bullet
But AIDS was no ulcer. It was caused by a complicated virus that was outsmarting even the greatest scientists of the 1980s. Without effective treatment, there was no hope. I had turned down AZT (Combivir, 3TC), the only (highly toxic) medication available at the time. I was still healthy -- and hoping to stay that way until effective treatments were discovered.
Unlike some, I never interpreted Louise's words as a guarantee that positive thinking alone would heal me. I heard the word "could," not "would," heal, which to me meant hope, a possibility. At this time, I had begun working at Harvard on a research grant for substance abuse and HIV/AIDS and was attending medical updates by Anthony Fauci, M.D., of the National Institutes of Health, the country's top HIV/AIDS scientist.
In other words, I had some balance in my thinking. I took responsibility for gathering information about my disease. Yet, I believed not in magical thinking, but in positive thinking. Remaining an optimist was imperative for me. I watched many friends die who thought there was no hope and just wanted it to be over as soon as possible.
And though I never believed Louise's message of positive thinking was meant to be about a cure for any disease, I was still interested in how she connected certain ailments of the body and mind with our belief systems. Louise's own story as a cancer survivor who claimed to have healed herself was very compelling for me. Even though I was acutely aware that HIV/AIDS was a beast of its own, I needed relief from the anxiety. The hope that Hay provided was just the medicine I was looking for -- and it held the possibility that affirmative thinking, as well as healthy eating and other lifestyle choices, could help maintain my health until an effective treatment was found.
Woman to Woman
Being a woman in the mostly gay male world of AIDS support groups, I related to Hay in another way, as well. I was a newlywed who'd taken an AIDS test as a precaution before trying to get pregnant -- and in the prime of my life was now dealing with the loss of the dream of becoming a mother. Hearing a woman's voice, so caring and compassionate, was deeply comforting to me.
In 1987, Louise came to Boston for a weekend workshop that, if I remember correctly, cost a few hundred dollars to attend. I headed there, packing my teddy bear and my mirror, those Louise Hay tools of the trade. The teddy bear was to help heal my inner child, a popular theme for self-help and New Age books at that time. The mirror was to look myself in the eyes and affirm, "I love myself and accept myself exactly as I am." I felt like Stuart Smalley on Saturday Night Live, repeating to myself, "I'm good enough, I'm smart enough, and, doggone it, people like me!"
What followed was an emotional two days in a large hotel convention hall filled with strangers sharing gut-wrenching testimonials, sitting on the floor, tears flowing, bodies swaying. I have to admit that the sappy songs were awful and embarrassing to sing. But I took what I liked from the weekend and didn't stress over the rest.
Louise, however, was beautiful on her low-level stage, so calm and lovely. Her voice seemed to float across the room. I was excited to finally meet Louise. I left feeling empowered -- not necessarily because I'd met her, but because I felt as if I was taking action to help myself deal with HIV. I could have taken another path, picked up drugs again or killed myself. So, I'm grateful that I was open to other options, even when others thought they were ridiculous.
Louise died in August at the age of 90. Yet, ever since those scary years before effective HIV medications came along in the mid-late 1990s, Louise Hay has been part of the soundtrack of my life. Just the other day, as a friend was anxiously preparing to go into surgery, I said to her a Hay mantra: "Every hand that touches you is a healing hand, divinely guided." That's become a natural reflex for me after years of listening to Louise's affirmations.
As news of her death traveled over the internet and social media, some other longtime HIV-positive folks or survivors of the plague years disparaged her teachings, calling her a dangerous, profiteering quack who told people they could cure themselves with happy thoughts -- and who blamed people for their own illness and death. "How Louise Hay's Spiritual Pseudoscience Harmed a Generation of Gay Men," read a typical piece in Slate.
I posted on my Facebook page: "Louise Hay, quack or healer?" Overwhelmingly, most people chose the latter. "I found her books very encouraging," wrote one friend. Another called her an angel who shared the healing power of love and acceptance. Still, I did have one friend who wrote, "Her tapes made me want to puke!"
Which reminded me that, back in the bad old plague days, sometimes anger was just as potent as AIDS was deadly. And why wouldn't we have been angry then? For many of us, nobody was going to help. We were on our own. From Louise, I learned how to nurture myself as the mother I wanted to be -- and would not be able to become because of HIV. My goal was not to cure myself, but to stay alive until effective treatment emerged. I would visualize myself being alive and well, one day telling my story as history -- as I am doing right now. (That's not to say I haven't asked myself why I made it and others did not.)
Yes, I agree it's too simplistic to think that affirmations could cure HIV/AIDS. I've met holistic practitioners who have pushed me to go off my medications. I've replied, "All the brown rice, seaweed, and visualization in the world isn't going to combat my viral load!" Today thankfully, we have both spirituality and effective treatment. That's a powerful combination.
Yes, Louise Hay undoubtedly profited from AIDS. But she also reached out to the HIV/AIDS community as early as 1985, before doing so became a major celebrity cause -- and two years before President Reagan first initiated the topic of AIDS in a speech. She held her first support groups for people with AIDS in her own home. And she did this at a time when there was more rage than hope, when there seemed to be no future for those living with the disease. For many, there wasn't.
At that time, Louise opened her home and her heart and carried us as we grieved. "I am safe; it's only change," she taught us to say. So, for all that, I believe that Louise Hay was a true angel who earned her wings. Thank you, Louise, and rest in peace.
Read Sherri's blog, HIV DIVA.