Q: Your book Fierce Blessing has the subtitle "A Journey into Alzheimer's, Compassion, and the Joy of Being" -- how does Alzheimer's and Joy go into the same sentence?
A: All the books and experts and many lay persons told us that this is a horrible disease which only gets worse each day. Although offered with a compassionate intention, it was a dark and hopeless message, and one which we found almost from the beginning to be simply not a true description of what we were experiencing. Yes, it is a dreadful disease, and yes, Helen (Terry's mother) lost more and more abilities over time. But those messages we'd received overlooked entirely the love and joy and laughter that we experienced with Helen as a direct result of her illness, and which we would not have without it. Even though certain of her abilities were lost she experienced the same physical pleasures and pain, the same fears, hopes, anger, and laughter, the same spiritual longing to love and be loved, as do we all. She was unfettered by convention; uncensored and alive.
At first we fought back. We fought the disease, we fought her, we fought the system, we fought ourselves. But then something began to sneak up on us. Slowly, we learned that Alzheimer's is not the end of a life. And that it need not be the end of a relationship. Alzheimer's, we found, is pretty much like anything else life brings one's way. It is change, and change brings with it opportunity. In this case, the opportunity to develop new, even deeper connections than we had had before. This is not to say that the experience was not difficult. It was almost always profoundly difficult, and by turns saddening, frightening, exhausting, and infuriating. But it proved also to be enlivening and enriching, and at times even hilarious. Ours was a broader, more complex, and far more richly rewarding experience than we had anticipated, or been led to believe awaited us.
"My mother once told me that she hoped she would die of a heart attack, quickly. She didn't. She died from Alzheimer's, slowly. Yet through those years she never stopped reaching out to life. . . . I know that my mother's illness brought her losses. I believe that it brought her gifts as well, as I know it did to Wayne and me. She was our blessing, although a fierce one." -from Fierce Blessing
Q: I see on the beautiful cover of the book, you feature a calendar that seems to be filled in with writing. Is this something from your personal experience? How did it contribute to the book?
A: This is a photograph of an actual page from Helen's (Terry's mother) kitchen calendar. In the early stages of her illness -- well before her actual diagnosis -- she began writing down, in ever greater detail, all of the events of the day, which was her attempt to keep track of her life. For example, where before her illness she might have simply noted the date of her great-grandson's birthday, now the notation might read something like this: "October 9. Jimmie's birthday. He was born in 1990. He is three years old. He lives in Sioux Falls with his mother Jane and his father Leonard. I went to the beauty parlor today." As you can see, she did this not only on "special" days, but every day.
We selected it for the cover because a calendar is such a commonplace and familiar object. The effect we hope for in the reader is of something at once familiar and yet jarringly different. A second purpose for using the calendar is that it speaks to one of the themes of the book, that people with dementia (like all people) never stop trying to do the best they can with the skills and tools they have. Third, the page represents the day-to-day aspect of the illness, as well as the journal format that we have chosen to tell the story. And finally, one of the purposes of our writing was to give a voice to Helen. She inspired the story. Her work, her words, she herself, is on the cover.
Q: Is the book available now? How can readers get a copy?
A: Yes, Fierce Blessing is available now. One way to purchase is from us directly. This can be done by telephone (toll free: 1-888-288-4841) or by email: email@example.com At this moment we don't have on-line ordering set up. We do take credit cards (V, MC), but only by phone. The books can also be special-ordered through any bookstore. It is important that a customer specify the title and/or authors accurately or that they supply to the bookstore the ISBN (Fierce Blessing's is 1-884610-71-4). In some cases, orders from us will include a s/h fee. See our website for details. Advantages of direct order from us include delivery to your door and autographing of the book(s) if you like.
Q: Is there a website that supports and promotes the book? What's the URL for it?
A: Yes. www.fierceblessing.com Visitors might also be interested in our fiction titles for younger readers. These can be accessed from the same URL.
Q: Will you be doing readings and signings? How can our readers hear you speak about this?
A: Yes. Not only readings and signings, but we would be very pleased to consider appearances before interested groups in any location. Please contact us with your idea or request via our website or phone.
Q: Many of our readers are trying to find comfort during bereavement. I know that Alzheimer's involves a progression of losses as well as enduring the death of a loved one at the end of the disease. Is there anything from your personal experience with this, that you found comforting or helpful on those very sad days?
A: We've probably covered a lot of this in question #1. In addition, we have found Stephen Levine's philosophy of mindfulness, lovingkindness, and softening around pain and grief presented in his many books (Who Dies?; A Gradual Awakening; Meetings at the Edge; A Year to Live) to be particularly helpful. Another thing we learned, largely through Helen's example, is to live in the moment, to experience it fully, and then to move on to the next moment. To experience and to let go. Since her death -- and even before -- we have taken her into our hearts. We talk to her, spirit to spirit, and in that way we remain in relationship. We continue to learn by her example.
Q: As you move out into the world with this book, what do you hope to accomplish by connecting with other families who are dealing with these same kinds of losses?
A: We want to help comfort people in their loss, but also to present a new paradigm -- one which includes gain as well as loss.
Q: What do you see for this book and your work around it for the next 5 years? 10 years?
A: We'd like to see this book, of most direct and obvious interest to family caregivers of persons with Alzheimer's disease, spiral outward from that core group to a wider and wider audience. We feel that it is important that two of our most important underlying themes -- the "re-humanization" of people with damaged brains and a message of hope to those who see only loss -- be heard not only by those with a diagnosis and their family members, but by a wide range of professionals who serve them. This includes doctors, nurses, nursing aides, therapists, social workers, hospitals, adult daycare centers, nursing homes and the corporations which own them, as well as the public at large. We want to help improve care for all persons with brain-injuring diseases or circumstances by changing society's perception of them. Although they often cannot fully care for themselves or express themselves in conventional or easily understood ways, like all people they have real feelings and needs, and even gifts to give.
Q: Is there anything in particular that you feel you want to share with our readers that we haven't yet talked about in this interview?
A: We believe that Fierce
Blessing is a story
on two levels. The first,
what we call the surface
story, is about three people
in a particular place and
time who experience a set
of circumstances together.
It's a circumstance that
literally tens of millions
of Americans are experiencing
right now, and we hope that
our story can shed some
light on others' journeys.
But there is a deeper story
as well, a universal story,
which speaks to anyone who
finds himself dealing with
pain, loss, or change. In
other words, everyone.