In August of 1999, Mike and I spent a weekend in Joplin, Missouri, attending an AA conference with a group of friends from our home group. That conference was for years a way to mark the end of summer, summer being a thing to be survived in our hot corner of the upper south.
That year we spent most of the conference in our room, Mike lying in bed with a terrible burning pain in his gut, fearful he was having another bout of the acute pancreatitis that led him to sobriety in 1991.
The pain was bad enough that we left Saturday night to get to a doctor at home. Elevated lipase and amylase, indicators of pancreatic inflammation, plus some shadowy things near the liver that were probably gallstones. We left the hospital with a stern admonition to see our regular doctor Monday morning.
Sometimes I wonder if I had known then what the next few years would bring, if I'd have been able to stand it. I have never had an interest in psychics, in any alleged means of foretelling the future: I just don't want to know. I stay away from Tarot readers, from people waving horoscopes, anything that might give some indication of what's to come. If I have the legendary grey veil over my face which means I'm not long for this world and you can see it? Do
not tell me. I want my departure from this life to be a complete surprise.
I don't think I could have managed had I known in advance how awful it was going to get, how thoroughly our lives would be taken over by illness and suffering and the constant fear of death. In the midst of all that came after, countless people told me "God never gives us more than we can handle," a platitude which irks me to this day, and one which invariably makes me think that God doesn't know who the hell he's dealing with. He may have his eye on that sparrow, but he's confused me with stouthearted, longsuffering Sally down the street.
In truth, I am a weak soul, a hopeless drunk and drug addict, eating disordered, a depressive, an angst-ridden pessimist, or at least I was all of those things until I finally got the point of those meetings I started in the early '80s. But I still have those tendencies now, and in times of crisis, I revert. My weakness is evident in the fact that it took me 10 years of not drinking to get the concept of spirituality, of God as I understand God. Slow learner, obstinate, hostile. I'm a runaway in times of crisis, so would I have stayed? Could I have stood knowing in advance? I doubt it.
As directed, we appeared in the doctor's office Monday morning, where the diagnosis was confirmed ~ acute pancreatitis, gallstones ~ and we were rushed to see a surgeon out of fear the pancreatic duct was blocked. Mike was in surgery that Thursday, and I, his long time love, assumed the mantle of real wife when the surgeon called to speak to next of kin about his liver. It was damaged, severely, in such bad shape it was evident in lumpy, bumpy nodules all over the exterior. A biopsy was in order to see how bad the damage was, would I agree?
I would not. It was the first of many terror-related near out-of-body moments I would have, standing in the hospital, phone in hand, listening to the surgeon tell me he could bleed to death with this biopsy. Bad outcome, not likely, he said, but still.
No. Others in the room report that I sounded calm and reasonable, but the answer was no, while the answer in my head was a screeeching, wailing, resounding
no, no, just close him up and get him back here so I can keep him safe. I want him back, alive, just like he was before you people started fucking with him. No no no.
The diagnosis was cirrhosis, not uncommon in alcoholics of Mike's severity, but unusual in that he had been sober nearly nine years. Tests for all of the usual liver destroying viruses were negative.
The deterioration that followed was marked by a parade of diagnoses, one after the other: atypical diabetes, pneumonia, chronic silent pancreatitis, ascites, acute pancreatitis, portal hypertension, and then the wasting began. My sturdy, muscular, fit man, a solid 190 when the ordeal commenced, started to disappear. Ten pounds, twenty, thirty pounds gone, and at the very worst of it, he was a skeletal 119, a cadaver miraculously breathing, looking like the Holocaust come to life, a horror.
It would take hours and more energy than I possess to recount the myriad illnesses and afflictions that marked the years. It went on, this ordeal, for four straight years, four years of illness and downturns, and brief days of improvement, always followed by more agony, more misery, more hopelessness.
We lived at hospitals and clinics, grateful for health insurance that let us go wherever we needed to go. He collected doctors and everywhere I went, I kept their numbers at hand, the endocrinologist, the internist, his gastroenterologist, the cardiothoracic surgeon, a rheumatologist, the dermatologist, and the cardiologist. I had lists of his meds with me at all times, as if those lists somehow contained the directions, the secret, to finding our way back to health and the perfect life we had.
Much of my life I wondered how people became so familiar with their physicians that they were known on sight, at the grocery, in a restaurant, wherever. The only doctor I ever had who actually knew me lived next door. In adulthood, I've been the anonymous, healthy woman appearing in the doctor's office for a mandatory yearly visit, the occasional pelvic or mammogram, and the once-in-a-decade bout of flu. I've always felt mildly affronted that I was essentially unknown to my personal physician, as if I were somehow not worthy.
I didn't understand how that connection occurs until I lived it, until I found out first hand how it comes to pass that the doctors know me on sight, from down the hall, across the cafeteria at the hospital. After four years of constant medical attention from Brad and Harvey, Carl and Diana, we became a family of sorts, all of us attendant and bearing witness to the destruction of my husband.
The parking lot ladies at the clinic saw us most often, and at our most defeated. Mike so wasted he could barely walk, his bones clearly on display through his yellowing skin. At the worst, he barely interacted with anyone, but I couldn't help but respond to their kindness, these women who helped us find a space to park, who took the keys from my shaking hand on the most wretched days, who wished us well with soft voices, sad and knowing eyes.
I became Mrs. C. to them, and it helped, somehow, to be recognized, to be remembered. They bore witness to the ravages of illness. They were there, expressing their sorrow, when we made the first trek to the cardiac clinic, when Mike, so breathless and swollen from heart failure, first had to be wheeled across the parking lot. They never asked me a thing, never wanted to know what was wrong, almost as if they knew I couldn't possibly pinpoint a single ailment from the constant onslaught of disease. The times I returned alone, because he had been taken directly to the hospital, their understanding was implicit in the whisper: "We're praying for you."
It's all such a blur that I'm not even sure anymore when he started to get better. The hepatitis was finally discovered and miraculously cured. The empyema left scars and a tendency to develop pneumonia. The diabetes is reasonably well controlled and the pancreatitis has hushed up again, back to its potentially deadly silence, quiet for the time being. The liver improved, the heart failure vanished, the chronic anemia was fixed with the last surgery stopping the slow leak of blood into his belly. What else, what else? They all run together, these ailments, just as the years of fighting for his life run together.
And yesterday, just yesterday, we went to Brad's office, for a checkup, for nothing, really. And the parking lot people don't know me anymore. I am a nameless, faceless client of the clinic, not a woman living with the agony of a broken heart and a dying husband. We smile at one another, and their faces are closed in a way. Friendly, smiling, but there is no opening to the heart in those eyes, no implicit prayer in the momentary touch of a hand.
I experienced a profound sense of gratitude in that impersonal transaction with the current crop of parking lot women: Mike is well, or as well as can be, and my broken heart's patched together and holding. I was reminded of how important it is to really see the people I encounter on a daily basis, to pay attention to others and the burdens they carry.
I am mostly free of burdens these days, and the parking lot ladies can dispense their compassion to others in need of a kindness, of some warmth, of a whispered prayer. The generous gift they gave to me will be passed on as best I can. We can make a difference in this world, in the smallest connection with a stranger. I will pass that on.
Labels: chronic illness, death, disease, generosity, hepatitis C, kindness, love in action
