Author Diane Ackerman was on a book tour promoting "An Alchemy of Mind: The Marvel and Mystery of the Brain" when her husband, Paul West, suffered a massive stroke that radically combusted the alchemy in his own brain. West, a brilliant writer himself, was left with devastating global aphasia (loss of language). "It was ironic that I was on book tour for 'An Alchemy of Mind' at the time this happened," Ackerman said. "I was the absolute worst possible and the absolute best possible person to have a spouse experiencing a stroke, because I knew in chilling detail what had happened."
So began an extraordinary journey that is lushly and evocatively described in Ackerman's "One Hundred Names for Love: A Stroke, a Marriage, and the Language of Healing." Recently released in paperback, the book documents Ackerman's experience pushing past the limitations of the traditional medical establishment and steering West back to the shoals of communication through a mix of patience, love, creativity, and sheer determination. The results of her efforts are truly remarkable.
I recently spoke with Ackerman about this journey.
Your husband's stroke did not come as a complete surprise to you.
Paul had high blood pressure, diabetes, irregular heartbeat, and a pacemaker, so maybe it was predictable that he would have a stroke. But predictability doesn't make or turn a fortune less devastating. I struggled with the need to balance my instinct for preserving myself and my career -- the self I was when Paul and I were equals -- with my moral obligation to take care of him and his new and urgent situation. I think war and illness both remind us in very visceral ways of the fleetingness of life and how important it is to hold loved ones tighter and even more fiercely.
When I stepped back during those first weeks in the hospital and could see what was happening from a naturalist or a poet's point of view, it removed me somewhat from the horror of what was going on. It also put the events in the context of the human condition, which I found truly fascinating. My heart was breaking, my world was disappearing, but at the same time I found what was happening in Paul's brain intellectually fascinating. I found the challenge of trying to figure out ways to help him recover fascinating, too.
And you did figure out remarkable ways to help him recover that defied conventional medical wisdom on many fronts. Could you describe this process -- what you've referred to as your program of "homemade speech therapy"?
It was an instinctive process. I knew about the latest findings in neuroscience and what's referred to as "neuroplasticity." The brain is a wondrously mysterious and flexible organ that can learn new things and heal itself. Recent studies have shown that 90-year-olds can make new connections in their brains and learn new things. There is no age limit to learning.
That said, in Paul's case I also knew that it was going to take a marathon effort. I heard from medical people and read in books that there was a window of opportunity and that anything Paul didn't get back within the first few months -- or within the first year -- would be lost, that we should just forget about him ever being able to learn. That is such a despairing point of view, and it's just not true.
Paul went through five noble-hearted speech therapists, none of whom could really help him get past saying "mem-mem-mem" and a handful of words. His words were all the wrong words and pouring out in funny combinations. There was a moment when a woman pointed to a picture of a telephone and asked, "What's this?" And he replied: "mem-mem-mem tesseract." And she said, "No, those are nonsense words. It's a telephone."
At that moment something dawned on me that I should have recognized earlier: that even though the words that we learned as kids -- mom, milk, sky, and so on -- are processed in the key language areas of the brain, it was possible that the words we learn as adults -- in our hobbies, our specialties -- are processed elsewhere in the brain, like other languages. I realized that I might be able to get through to him in that way.
That's when I took over his therapy. I'd looked at the workbooks that they'd given him and found them demoralizing, demeaning, condescending, terribly ambiguous, and just fraught with elements that would stymie anybody with a language disorder. They were one-size-fits-all exercises. So I decided to make up my own exercises for him. I made up Mad-Libs, fill-in-the-blank-type exercises that were kind of funny and even risqué. Some of them were about people he knew and gave him a chance to be creative. They were not condescending; they dealt with him as an adult. I just saturated him in language. With all of that -- and his trying to dictate a memoir and working diligently every single day -- his brain began to rewire itself. He was saturated not just with language; he was saturated with love and affection as well.
You bore witness to the power of love in a literal way.
Recent findings suggest that love itself can be healing. Holding the hand of someone you love can be healing. It makes them feel safe and secure and allows the brain to stop worrying about threats and just concentrate on learning new things and healing. I turned our house into a safe place where he could improve, but it wasn't just a medical quest. More than anything, I think this is the crazy love story of two very romantic, playful, deeply eccentric, word-obsessed people. I really hope, more than anything, that readers will find this a compelling story about hope and patience in the face of heartbreak and about keeping love alive even in the midst of crisis.
Many people change the way they relate to people with aphasia because they appear so compromised. How did you communicate with your husband initially, when his capacity to communicate was so diminished?
It was very complex. In the beginning, I spoke with Paul very formally and called him by his name, which was not something we ever did. It didn't take long for me to realize that this was not going to work, that there was still an intelligent, deliciously lovable grown-up inside him. It's important for people to remember that someone who's had a stroke is still the same person, even if they look or act differently. So I went back to talking to Paul in the old ways and he understood. We always had tons of pet names for each other, and we talked in baby talk and slang and silliness.
Mind you, this took a little while, because some forms of aphasia are extreme. But all of this was part of a learning curve. He slowly began to understand me more and more. It's also vital to remember to include play and laughter. Those are the first things to go in any illness. Yet it's through play that children learn the most. This is also true for adults. It's through play that people bond.
After reading about your exceptional tenacity, I was not surprised to learn that you spent several years as an anonymous telephone suicide and crisis counselor. Apparently those were very powerful, meaningful years in your life. Could you elaborate on what you got out of that experience?
People think that you have to be larger than life or saner than most people to be a crisis counselor, but you don't. You just have to put your own concerns up on the shelf for a while and be nonjudgmental, really receptive, and compassionate. It was some of the most rewarding time I had ever spent. You're not doing it for applause or for status or for anything. You're really just doing it purely as an act of compassion, because you don't want your fellow creatures to be suffering, and because it feels so good to do it.