I'm truly blessed to be able to say that Patrick Donnelly was my professor at Colby College and is now a cherished friend and mentor. In addition to taking a great workshop with him, Patrick (along with Peter Harris) oversaw my senior honors project and truly showed me the strength of poetry. He would often invite me over for a cup of tea while we discussed my work; it was what I'd always hoped my college experience would resemble. During that time, I quickly learned what an incredible human being he was. Patrick's tremendous heart is apparent to anyone who meets him or listens to just a few lines of his gorgeous writing. Enough out of me - enjoy learning more about this amazing man...
PATRICK DONNELLY is the author of THE CHARGE (Ausable Press, 2003, since 2009 part of Copper Canyon Press) and NOCTURNES OF THE BROTHEL OF RUIN, forthcoming from Four Way Books. He is an Associate Editor of POETRY INTERNATIONAL, and has taught writing at Colby College, the Lesley University MFA Program, the Bread Loaf Writers' Conference, and elsewhere. He is a member of the Massachusetts Poetry Outreach Project Advisory Board, and Director of the annual Advanced Seminar at The Frost Place. His poetry has appeared in many journals, including American Poetry Review, Ploughshares, The Yale Review, The Virginia Quarterly Review, and Hayden’s Ferry Review, and has been anthologized in the Four Way Reader #2, The Book of Irish American Poetry from the 18th Century to the Present, and elsewhere. With Stephen D. Miller he translates classical Japanese poetry and drama; their translations have appeared or are forthcoming in many journals, including Bateau, Cha: An Asian Literary Journal, Circumference, thedrunkenboat, eXchanges, Kyoto Journal, Metamorphoses, New Plains Review and Noon: The Journal of the Short Poem. Donnelly, in previous years, performed as an actor and opera singer, worked as a professional chef and food writer, helped to coordinate a meal program for people with AIDS, cancer and heart disease, and taught health-supportive cooking and eating to senior citizens and people recovering from drug and alcohol addiction. His spiritual curiosity led him, at different times, to study for the Roman Catholic priesthood and to live as a Buddhist and a Muslim.
What is the year you were first diagnosed? How old were you?
I believe I was infected with HIV about 1984; I tested positive in 1989 when I was 33 years old. I will turn 55 in 2011.
What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?
In the decades since I was diagnosed, being infected with HIV has changed from an almost-certain death sentence to a manageable chronic illness—but only, I hasten to add, in parts of the world where people have access to both general and specialized health care and insurance to pay for that care. What I would tell a person newly diagnosed with HIV today is that your life will change, and you will have to become a spiritual warrior on your own behalf, but you can have a fully-realized life.
What I would tell a person without access to treatments is—well, I would say nothing: I would hang my head in shame and dismay. The fact that millions of people go without the treatments that have saved my life is a grievous injustice that I don’t begin to understand, and that we as a society must work to change.
When I was newly diagnosed I was given, or discovered for myself, some other helpful advice:
Get support: build yourself a “wellness team” that addresses and supports your physical, emotional and spiritual well being;
Make whatever changes in your life are necessary to eliminate or lessen threats to your physical, emotional and spiritual well being;
Thoroughly educate yourself about HIV and HIV treatment (both conventional and alternative medical approaches), and about general wellness resources like nutrition, vitamin, mineral and herbal supplements, exercise, and stress management techniques;
Learn what factors help you to be well, and assemble as many of those factors as you can against the stress HIV disease places on your body. Wellness, like disease, is a multi-factorial phenomenon; it doesn’t arise from one cause. So I’ve learned to listen to my body, eat well, take supplements, exercise, manage my stress, address any small problem before it becomes a big one, and to adjust any part of my regimen if it becomes necessary. Part of being a spiritual warrior in reference to any disease means arming yourself with knowledge, and not expecting your medical providers to have all the answers. This is even more important for people who don’t live in urban areas where doctors are familiar with HIV standard-of-care: frequently since I left New York I find myself asking for tests or treatments that are not common in the areas where I now live. I am not shy about advocating for myself in such situations.
Each person must make their own decision about living openly with HIV or not, because unfortunately—ridiculously, outrageously—in some places there is still a stigma attached to the diagnosis. From the beginning I chose to live openly, on the reasoning that it would expend a huge amount of energy to keep a secret as big as this one. I knew my energy would be better spent fighting to be well and to live my life, and I’ve never regretted this decision.
Please explain a bit how your condition affects you.
HIV affects each person differently, and each person differently at different times—as is of course also true of other illnesses. I’ve often thought it was somewhat ironic and humorous on the universe’s part to make mine a path of life-challenging illness, because I am not a person who is very good at being sick (if there is such a person). I’ve been known to go completely off the emotional deep end about having a cold that dragged on longer than I would prefer. Therefore it’s fortunate—more than fortunate, damn lucky—that my life with HIV has been relatively easy. From 1989 when I was diagnosed until 1994 I used a variety of alternative medical treatments, successfully for the most part. In 1994 I became quite ill with general malaise, low-grade fevers, and eventually a cancer called Kaposi’s Sarcoma inside and outside my body, and two bouts with Pneumocystis pneumonia (PCP). The latter two opportunistic infections killed many people during the early years of the AIDS epidemic—I was probably about a year or less from dying at that point. Today it frightens me to read the medical journal I kept in those days—even to touch the book or walk near the shelf where I keep it inspires dread. Some researchers have recently suggested that receiving a diagnosis of life-threatening illness, or the onset of symptoms, can cause Post Traumatic Stress Disorder, and I don’t doubt it.
But when I began anti-retroviral therapy in 1996 (using the second, more effective generation of such drugs, which doctors were also much more skilled at prescribing) my immune system reconstituted itself quickly. Since then, though there is always some small-to-medium problem to manage, I have had a wonderful life, and am in many ways healthier than some people without HIV. Now when I read that some relatively young person has died of HIV, I often wonder if some other factor (alcoholism, drug abuse, psychological factors, etc.) was to blame, in the sense of stressing the immune system beyond its capability to adjust and recover. Even as I write this I have to admit this response is probably only an anxious talisman on my part: I know there are people who die of HIV today, even in the developed world, who have done everything they could to be well. It is a terrible thought: one wishes, pathetically, to find some difference from the people who succumb—a sad gesture of denial the human mind almost can’t keep itself from making.
What are 3 things you couldn't live without?
I’ve learned over the years that though I treasure certain possessions there’s very little I can’t actually live without. I once traveled for many months with just one duffle bag, and had such wonderful experiences that I didn’t feel I lacked for anything. But to speak seriously, of course I cannot live without the drugs that play such an enormous role in keeping me alive. I’m extremely grateful for the human ingenuity that developed them, and the generosity that makes them available to me and others who couldn’t otherwise afford them.
In fact, though there would be likely nothing I could do about it, I do sometimes imagine a time when some national or global crisis would disrupt the pipeline for HIV medications and others. It isn’t beyond the range of possibility—a flu epidemic on the scale of 1918, for instance—though in that case, the scale of other tragedies would dwarf a disruption in the supply of my medications. The network of connection—the social contract, let’s call it—that keeps human society afloat is not infinitely resilient, as we saw recently when the world economy drove itself astonishingly quickly into the ditch. The contract needs to be constantly maintained and reaffirmed in order to continue. (Can you tell I am a worrywart, an aficionado of the worst-case scenario? This may be a character flaw, but in some ways it has served me well.)
The time I spend filling my monthly pillboxes are moments of mystery, awe and prayer for me—I literally hold in my hand the substances that restrain the virus in my body, and that make my life possible. I want these miracle chemicals available for everybody who needs them, and struggle with the question of why I have been selected to receive them. (Does anybody remember that years ago actor Malachy McCourt used to answer the phone on his radio call-in show by shouting “YOU HAVE BEEN SELECTED FOR IMMORTALITY”?)
To speak of less weighty things: poetry, good books and art have helped me live my life and given meaning to it. And small human comforts are not by any means irrelevant: when my dental hygienist suggested recently that I give up coffee and tea, I let her know in no uncertain terms that this would not be happening. As poet Jack Gilbert put it:
We must risk delight. We can do without pleasure,
but not delight. Not enjoyment. We must have
the stubbornness to accept our gladness in the ruthless
furnace of this world.
What are you most proud of?
A Jewish friend who recovered from cancer and a painful divorce told me once about the prayer called the Shehecheyanu: “Blessed are you Lord God, ruler of the universe, who has given us life and sustenance and brought us to this happy season.” She said she and her family say this blessing every time they do something for the first time: open the door to a new house, begin a new job, etc. I can’t count the times since I contracted HIV that I’ve felt thankful for having reached this or that day: the day my T-cells first went over 400 (from a nadir of 8), the day I began my graduate study, the day I was awarded my degree, the days my first and second books were accepted for publication, etc. But of all the days, none have been finer than the one in 2002 (my birthday, if you can believe it) on which I met my love, my darling Stephen Miller, and the day in 2005 on which we married in the great Commonwealth of Massachusetts. We both found love late in life, and it is all the more sweet for that. I can’t say I feel proud to have reached these days, since I played only a small part in that. But I do feel the inexpressible joy that I believe every person takes birth to experience. I hope I have many more years of life and work, but if I were to die tomorrow I could not feel that I have missed anything of life and love, because I have had both in abundance.
Where do you get your strength?
Well, you know, there is a certain amount of momentum that one gets from working toward certain professional and personal goals: I have a lot to look forward to, and I think that sends a good message to my immune system. I can’t wait till my second book of poems is published, till the book of Japanese poems Stephen and I have translated together is accepted somewhere (fingers crossed). And I long to show Venice to Stephen (and Stephen to Venice) the way he showed me Kyoto.
But ego-achievement, nice as it is, can only carry you so far. I get my real strength from the love I give and receive, from the energy the earth and the universe gives to all living creatures, and from a sense that there is some luminous substance that interpenetrates everything. My life has been hard at times, but I’ve never felt alone, which I believe is the worst kind of suffering. I have been lucky, lucky, lucky to share my life with superb people, to have experienced much that is beautiful, and to have been led in a path of learning.
Stephen and I had our gold wedding bands inscribed inside with a phrase from William Meredith’s poem “Accidents of Birth”: “you, to teach me.” And we do teach each other, and bring each other back to sanity, every day. As I get older I fall more deeply in love with what I think of as “the human project”—the art, the learning, the achievement, the struggle to become more wise, just, compassionate. Even the weaknesses to which we’re susceptible make me feel tenderly about our tribe, and I am so curious about how it all will turn out.
Many of us waste so much time speculating about the future, and projecting ourselves into it. Our projections are based on our particular fears and desires, of course, and usually have very little to do with reality. One of the blessings of illness—or, at least, some people are able to turn it into a blessing—is that it can cut short this projection. When we’re shown our mortality, we realize that it’s impossible to know the future—there are too many variables, most of them beyond our control. We realize that we have only the present, only this moment.
The next question that naturally arises is: “If I have only this moment, what is this moment for?” Everybody has to answer this question for himself or herself, and answering it may be a long and evolving process, if we’re lucky enough to be given time for that. But just by causing this question to arise, illness can inspire a powerful reordering of priorities. Things we considered very important, or that we worried a great deal about, may suddenly seem like nothing. Other things that we neglected, or thought we would attend to when we “have the time,” may become very important.
Years ago I received a letter from a man who was also recovering from a serious illness. He said that he found himself lethargic, afraid to make plans or begin any new project. Having come so close to death, he wasn’t sure how he wanted to spend the rest of his life. A New York psychologist has studied this constellation of symptoms and named it “The Lazarus Syndrome.”
I wrote him that I also had had trouble taking up again some of the difficult aspects of my life, which I had felt free of when I thought I was dying. There is a thread that snaps when one lets go of life, and a sense of peaceful relief from struggle. But that thread does not break as easily as some people think: I’ve come to believe it has to be broken, in some sense, with an act of the will. Though sickness may bring us to the brink of death, we have to choose to go. From watching friends die, I came to understand that dying is hard work, just as living is. We have to loosen one by one each of the seals and locks that bind us to the earth plane. As Walt Whitman put it, “Strong is your hold O mortal flesh/Strong is your hold O Love.” From my own experience, though I had begun preparing myself to die, I had not yet chosen to, and there was a difference. When I recovered and began to pick up the reins of my life, the fine and difficult both, the life force rose up under me again in all its distressing splendor.
Since then, frustrated as I often get with troubles of my own life or character, there is some part of me that always says yes to the speaker of Edna St. Vincent Millay’s poem “Renascence”:
Ah! Up then from the ground sprang I
And hailed the earth with such a cry
As is not heard save from a man
Who has been dead, and lives again.
I haven’t yet touched on why I believe I contracted HIV. The answer is I behaved recklessly in my 20s—but I refuse to condemn the person I was in those days. I didn’t think much of myself, was fiercely lonely, and turned to regular applications of sexual pleasure to assuage my discomfort. The huge irony is not lost on me that it took contracting HIV for me to learn how to not throw my life away. I don’t struggle against this destiny, because I appreciate the elegant spiritual logic of its design: I had to be shaken awake, and on the whole I’m grateful for the shaking. I would have missed a lot otherwise.
If you could send one message to medical professionals around the world, what would it be?
Some medical professionals give lip service to the idea that they’re happy to work with well-informed patients who expect to play an important role in making decisions about their own health care. In fact and in practice, such doctors are less common than I wish: not too many years ago I was even “fired” by one doctor because I was and am assertive in asking questions, weighing alternatives and choosing treatment plans that make sense for me and my life. I, in turn, have left (or not joined) medical practices which were not up to date with what I understand as standard-of-care. I interview doctors at first appointments as an educated consumer—if that surprises or angers some individual doctors, so be it—and if I don’t get a good feeling, or receive answers that I feel aren’t optimal, I move on. If necessary I travel to access the best care rather than settle for less.
Some patients encourage paternalistic behavior on the part of doctors by giving them an almost god-like power and authority, and by not taking responsibility for those parts of their own lives that are in their control. To such patients I say, educate yourself, keep good records, go to every appointment prepared to ask questions, to learn, and to weigh alternatives. To such doctors I say, become willing to work with feisty and knowledgeable patients.
Over the last two decades men and women with HIV and women with breast cancer, among others, have virtually forced some autocratic doctors, hospitals and drug companies to improve the way they relate to patients, at least in the United States. We’ve forced them to see us as people, rather than cogs in the vast health care enterprise. But we still have a long way to go until people with life-challenging illness receive the care they need in the context of fully respectful and human relationships with medical professionals.
We who are living with life-challenging illness have an important role to play in this, not only by educating and standing up for ourselves, but by becoming activist about helping others receive the treatments they need. Many is the time that I fought for some test or treatment—and got it—and afterward thought: what if I had not known what to fight for, or how to fight, as must be the case with many? Many patients walk away after having been told no, not realizing that pressing harder might have meant a different answer. Insurance companies, Medicare, Medicaid, Social Security and private disability institutions, in particular, count on our meekness and lack of information: it saves them money and effort. My advice is, don’t make it easier for them: get smart for yourself, then share what you know with people in a similar situation. There is almost always a way over, around, or underneath any given obstacle, given enough stubbornness.
Though in my years navigating the health care system I’ve been frustrated with a small number of individual doctors, there are many stellar doctors and organizations who are leading the way toward a more holistic view of medical care and the relationship between doctor and patient, and also to the integration of medicine with access to food, shelter, clean water, sanitation, education, and economic opportunities.
One is Paul Farmer, who by founding Partners in Health has changed the way HIV, TB and other formerly fatal diseases are treated around the world today. I give to them every chance I get: http://www.pih.org/
I keep a framed quote on a shelf in the meditation room that Stephen and I have set up in our house. It’s from an essay by James Carse, and expresses perfectly what I’ve come to feel about living with HIV, or about any other danger that threatens to diminish my life:
This is the deepest secret of the living water:
it transforms every obstruction into a new expression of itself.
It accepts as channel what is presented as barrier.
The mountain does not stand in the way of the spring;
it is the way of the spring.
If you wish to listen to Patrick reading some of his poetry, visit his page on From The Fishouse - a fabulous non-profit website that seeks to "promote the oral tradition of poetry."
Thank you, Patrick...for everything.
What an incredible man with a strong, bright spirit. I can see why you consider him an inspiration to you, Maya! It's so cool that you interviewed him for your blog. I loved reading every word and others are sure to feel the same. Thank you. :) -JillReplyDelete
What an AWESOME post! This is so inspiring to read. I'm going to pass this on! Great job!! xx OliviaReplyDelete
Maya, this is truly inspirational. What a lucky girl to have Patrick as a mentor and friend. I am beginning to think you have a magic power of attracting wonderful people into your life.ReplyDelete
I'm so glad you all took so much away from it. I knew Patrick's answers would be great, but I didn't realize just how great. Cathy, you're right - I have some pretty phenomenal people in my life; I am truly lucky (and you are certainly one of them) xoxoxReplyDelete
Wow....I wish I had taken a course with him when I was at Colby. :)ReplyDelete