How does any one of us live knowing he or she will eventually die? And how does a family plagued by a genetic predisposition to a particular disease say farewell to those who pass on, recognizing our own ends yet to come?
Looking at several pictures taken recently, I linger on one photograph. A familiar woman is bent over in the glare of intrusive sunshine, shoulders rounded, holding on to her youngest daughter’s arm and clutching her husband’s hand. A sister wraps her arm around her black-jacketed waist from behind. The woman’s brown hair is streaked with silvery strands, her face creased with sleeplessness and sorrow. She looks unlike I imagined, haggard in the daunting heat of a Texan afternoon.
It is myself I study.
Our large family was standing prayerfully by the church’s columbarium, a wall with recessed areas for urns filled with cremated remains. It would soon hold my oldest sister’s ashes. And it felt almost unbearable to reckon with the truth of it. Marinell, my oldest sister named after our two grandmothers, passed from the serious effects of a massive heart attack. She rallied, failed and rallied again for ten days. She had a pacemaker, had had a heart valve repaired years ago, but developed congestive heart disease. She was only seventy-eight.
I have lived sixteen days of nothingness and dreaminess, of times racked by weeping so deep there were no tears, and tears that fall without sound and with thunderous outpouring. It is simple grief. Nights of wrestling with sheet and quilt, Marinell’s face coming forward, then fading. I awaken feeling she is a phone call away and go back to bed whispering her name. Her lush, eloquent cello playing arrives on a sigh. I felt her hands slip onto my shoulders and her soft smiling as I wrote a poem for her memorial service. I know she has gone on ahead of us. She is just not really here now.
The woolen rug in my room has a contemporary design of mauve tulips on it, edged in Wedgwood blue. I stand in the middle of it for moments at a time, remembering when she handed it to me. It had graced her light-imbued home, now is in mine, so is a comfort each morning under my bare feet.
I have resisted writing. What can I write about death, about loss, that makes good sense? We each know the ache of it, that indefatigable longing that follows us around. What can I tell of Marinell that would reveal her not only to your mind but soul? You will never know her as I have and so it must be. Sisterhood is a rich palette of colors, a strong weave of emotion and deed. It is far too soon to share the unique quirks of her personality, the intimacies of her creative, gracious, energetic years on earth. Her loving impact on me, on countless others.
But what I can write about is the matter of shared blood. About our physical hearts, their fantastic and wayward ways, how they act up without provocation and despite tending to their needs. Maybe this way I can face it again, then put it back in its place.
The history of heart disease killing my family members is considerable. My maternal grandmother passed from a cerebral hemorrhage. My paternal grandfather had a fatal stroke. My mother’s days were ended by congestive heart failure at ninety-two and my father died following complications of a quadruple bypass at eighty-three. I have two brothers and a remaining sister with high blood pressure. One brother has had two ablation procedures (one in a Bangkok hospital when travelling) that are to improve and possibly quell a potentially fatal rhythm problem called A fibrillation.
My heart problems reached a critical mass at age fifty-one as I was hiking in the Columbia Gorge. (I have written of living with heart disease in this blog’s “Heart Chronicles” posts.) A crushing sensation sent me to my knees. Before I knew it, I was diagnosed with coronary artery disease. Two stent implants were placed in a major artery to prop it open. I was plagued by tachycardia, a too-rapid heartbeat, before the mild heart attack and various arrhythmias after, one being the dreaded A Fib. I have taken various medications with mixed results, one a common statin that caused severe muscle toxicity. In the first years I was in emergency rooms often. But over the years I have continued to exercise daily, decreasing inflamation, strengthening the heart muscle and, so far, outliving my prognosis.
At the memorial service I noted how much we all have survived of life. Everyone in my family is a “doer,” eager to learn and accomplish things. We do not fit the typical heart disease profile, for the most part. We are physically active, even rather daring. It is fair to note we are intellectually engaged and creatively oriented, with spiritual beliefs that keep us resilient. No one could accuse us of being disinterested in or lacksadaisical about living. All are happy travellers; college educated to various degrees; eat well and healthily, overall. We have had our share of bad habits to overcome, but my cardiologist still thought my smoking years prior to the diagnosis could not have been enough to tip the balance.
Genetics are the common denominator. The family tree is hearty and adaptable as many, if not most, are. We have been seriously ill only to rebound countless times. Being of the mind that attitude makes a significant difference, and prayer guides and even heals, our essential modus operandi is to live lives of full immersion, with faith and hope.
We live with heart, how else would anyone choose to live? Not without errors or some regrets, certainly, but with an expectation of joyful moments shared. Compassion and common courtesies are both important. And there is a belief in vigorous, positive change when there are snags in life to address.
But we get heart disease despite all this. We are getting older, all of us in our sixties and seventies. It seems impossible to me. I don’t feel like the woman in that earlier photograph, nor do my brothers and sister feel slowed by health issues. My various siblings travel worldwide, perform music and shoot and exhibit photographs, go hang gliding and hot air ballooning, ride motorcycles; collect unusual items, make crafts, enjoy an entreprenurial bent and manage real estate. They also engage in quiet volunteer work and entertain friends and family with care and a joi de vivre.
I stop here and realize I am writing like mad in an attempt to stop the inexorable advance of this illness. To at least impede it, to put it off with my words, a fortress against loss. I tell myself: see how people can live despite the heart’s glitches, its failures? How can it harm us when we love life this much?
But, indeed, why not? This is the way of the human body: it is born, it is an instrument of wonder and navigates us through our complicated lives, it gets hurt and heals, it gets loved and reviled, it brings us to one another and separates us. It does its work day in, day out, exquisitely made, harmoniously humming most of the time for the majority of us. Until it cannot. We all pass this way and then, pass on.
It hurts me to say it. Truth reaches into that tenderest place when every bit of life is known to be mighty yet fragile. It is a precarious balance, more than we know–if we realized how delicate, how thin the veil between life and death we would be awestruck as well feel fearful to get up each day, making elaborate plans that can be erased in a breath, a blink. But we do, and too often forget how fortunate we are to have the will and means to do so.
So how does a family–how do I–live with the knowledge of heart disease, the potential for ending our days too soon? We can’t have surgery to excise the heart. We can undergo only so many procedures, in the end. So the conditions are acknowledged. We call and email to check in when we live far away. We come to the hospital when we live nearby. We rally for each other and share information, reassure and embrace one another. We pray and offer healing love. We will likely attend more memorials. But we don’t belabor it, nor do we gather around to bemoan mortality. We must enter this moment with a finely refocused appreciation of all we still can discover, do, be.
I loved Marinell in ways no language on earth can ever entirely and accurately illuminate. It is alright. How little time we have with one another, how we are charged with caring, must practice such love. Let the heart have its due, feed it, fill it, make it your first priority, listen to its music and wisdom and honor it with who you are until it has danced all dances with you, then leads you into a final bow.