Friday, January 09, 2009

the parking lot ladies don't know me anymore

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.

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19 Comments:

Blogger Larry said...

Belle,
You are quite a writer. I am a private muser as you can see on Yucatan rebirth. I do hope that if a life in Mexico is in your future, or a visit to Progreso, that you come by and see us. You're my kind of gal.

Larry

January 11, 2009 2:52 PM  
Blogger Larry said...

Email me here if you ever need to know anything about coming down here.

Larry

January 11, 2009 2:53 PM  
Anonymous ewe said...

I was struck while reading your piece. You pinpointed so much about me which gets me into tremendous turmoil and anxiety. I often never give the benefit of doubt to others because of fear that makes me sit in judgement. It is not a safe place of solace to be and has proven to lead only to more isolation. More importantly i often forget everyone else is human too. Your writing was a very touching testimony of strength, togetherness and gratitude.
Thank you. AGAIN!!!!! lol

January 11, 2009 4:37 PM  
Blogger Big Fella said...

Powerful post, it reminds me of why I link to you on my blog.

January 11, 2009 5:35 PM  
Blogger Greg said...

That had me gripped. I was desperately hoping it wasn't going the way of very bad news, so it was wonderful when you turned the corner there, and I love your epiphany about the comfort of impersonal interactions - who would have guessed? I'm currently going through a very confusing time, health-wise, with my Liver heading towards cirrhosis (although I have only ever drunk water) and now Diabetes, too. I'm devastated and so perplexed to find that my body is trying to kill me.

January 11, 2009 8:45 PM  
Anonymous Fredericka said...

All right -- you've forced me to delurk after all this time because it would just be rude to derive so much pleasure from a post without thanking the writer. You have a singular gift.

Thanks for sharing.

January 11, 2009 9:14 PM  
Blogger Chris said...

What a powerful and raw look into your soul...glad for the time you now have to enjoy each other for a while longer. So hard when reality hits us and we have to learn another lesson...gratitude is such a key to daily happiness, and paying it forward is always a boost to our souls!

January 11, 2009 10:40 PM  
OpenID rjjs8878 said...

I concur with all of the previous comments. Thanks for sharing this story.

January 12, 2009 10:11 AM  
Anonymous yvonne said...

Beautiful writing, in service of wisdom -- thank you. My most heart-felt best wishes to you and Mike.

January 12, 2009 2:13 PM  
Blogger Blog O. Food said...

You are so sensitive and smart; so god damned intuitive and articulate that it makes me cry. I will never be as good at anything as you are at telling a story. My spirit crumbles with yours; my heart soars when yours does. You are the puppeteer pulling the strings, and all I can do is jump.

January 12, 2009 7:16 PM  
Anonymous Michele said...

Thanks for that Ms. Lynette.

January 13, 2009 1:58 PM  
Blogger ♥georgie♥ said...

WOW!!! I am humbled and so not worthy...this post was ...well no words can describe it...other than POWERFUL!

January 13, 2009 2:19 PM  
Blogger TuTu's Bliss said...

This post was so humbling and strong in every way. Thank you. Jen

January 13, 2009 6:43 PM  
Anonymous Mark H said...

I've long been aware that I don't learn Life Lessons when things always go beautifully. In those times, I sit in a rut and cruise. Your open heart here is beautiful to see....and while I don't think oyou needed that experience to be that severe, you ARE a strong woman, a complete inspiration to many... And when you give the lesson, it's SO beautifully written it draws our own emotion along with you. You certainly shared one huge life experience, Lynette, thanks.

January 14, 2009 12:33 PM  
Blogger David said...

Sounds to me that you handled all this just fine. I mean you are still sane, Mike is still here and you are still at his side. Was it easy? Of course not, but you handled it. Handling means coming out the other side, and both of you did. So give yourself some credit.

January 14, 2009 12:45 PM  
OpenID ttowntommy said...

I'm going through close to the same thing you are now with my Father caring for him at home during his end of days process.

It is grueling but it makes us stronger wiser people. At least that's what I keep telling myself.

Your story and mine are quite similar I kicked drugs in 1989 but the escape even to this day calls to me during times of stress. I just know I dont want to go down that road again waking up in some strange motel and looking in the mirror to see Keith Richards staring back at me.

(((( hugs )))))

~T

January 15, 2009 9:44 AM  
Blogger planoboys said...

Thanks for so eloquently sharing your stories. You have a gift that allows you to share your feelings through words. Your stories are heartfelt and captivating. May you both have many more years together!

January 17, 2009 9:40 AM  
Anonymous Anonymous said...

I've heard similar stories from spouses of the critically ill, but few so poignantly told. Did Mike's doctors or Mike himself recognize your role as the glue holding the ship together, I wonder? Did you? Did it take the uninvolved eyes of parking lot attendants to see?

January 19, 2009 3:33 AM  
Blogger Joe said...

I started reading this a couple of weeks ago, but just now finally had the strength to come finish reading it. You are a wonderfully sensitive person to think about taking the time to acknowledge the small acts of kindness and connection with strangers. Your description of your saga with Mike truly touches my heart, and gives me further encouragement in carrying my own burden with some skill.

It's amazing how fragile everything is, isn't it... and that we don't all think about that all the time? I need to remember it more often myself... Thank you again, my friend.

January 28, 2009 1:16 AM  

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