Other People's Pain

I’m hardly a sheltered innocent from suburbia, but living in Buffalo showed me a side of the world up close that before I had seen mostly from a distance, through smudged bus windows or on newspaper pages I skimmed over, not feeling an intense connection to my life.

When we moved there in 2004, I thought, “Well, it will be pretty much like Ohio only colder.” I’d grown up in East Cleveland in the 1960’s and figured that lake effect snow would not be that hard to take. But the city was far more depressed, both economically and emotionally, than I was prepared for. Once a very rich city, with gorgeous Victorian architecture fit for shipping magnates and captains of industry, hard times had moved in a long, long time before we did.

Main Street was block after block of crumbling storefronts between the remains of the city center and the artsy/depraved Allentown section where we lived. Pedestrian traffic was heavy on clients of the Salvation Army temporary hotel and a methadone clinic. A block away Allentown had bars, art studios, transvestites, good food, more bars, tattooed hipsters, and a few streets with beautiful old brick houses built close to the matching brick sidewalks, flowers on every porch, and garden havens in back. (In one of those gardens I met an angel named Margaret, but she deserves her own story so I’ll save that for later.) Though I tried hard to find beauty and I’ve heard there’s been some resurgence since we left, little of it felt like HOME while we were there.

Main Street divides the rest of the city from the East Side – once a Polish and German neighborhood, it’s been tragically devastated by neglect, bad management, and the flight of people and dollars. The Erie County Medical Center, where Frank had his first four months of chemo, is among the East Side landmarks, along with dozens of churches, the Broadway Market, and the beautiful old Central Terminal. ECMC is a top-rated trauma center, sad to say in part because of the prevalence of gun violence, in particular on the East Side. Across the street from ECMC stood an informal memorial to the cost of that violence – a phone pole covered with stuffed toys, and a sign marking the number of consecutive days without violence.

One day during Frank’s initial hospitalization I saw a rather turbulent small crowd outside the entrance – hysterical girls, and young black men tense with anger, coiled to strike but lacking a target. One had pit bull on a chain, and I thought of them at the time as “the pit bull boys”. There had been another shooting overnight: one boy dead and another gravely injured. I learned his name was Desmond, after Bishop Desmond Tutu. Now he lay in a darkened room with his face to the wall, partially paralyzed and refusing to speak. 

That supposed pit bull boy had a name, and a mother who I saw in the hallway, her face layered with exhaustion, adrenaline and fear. I felt so ashamed for having reduced those boys to a label in my mind.  Leaving the hospital that day was when I first noticed the sign that said, “0 Days of Peace”.

While trying to come to grips with what I wanted to say about all this, the following quotation attributed to that good Bishop appeared in my Facebook feed:

“If you are neutral in situations of injustice, you have chosen the side 

of the oppressor. If an elephant has its foot on the tail of a mouse and 

you say that you are neutral, the mouse will not appreciate your neutrality.”

I’ve struggled deeply with writing about this experience. At the crux of the issue – of Desmond, of the East Side, of so much of life – is what we choose to do with, or about, other people’s pain.  It is far easier to bear your own pain than to watch the pain of someone you love. Up close there’s no insulation, no suburbs to flee to. Some people are very difficult to help. And it’s not wrong to take care of yourself too – you can’t give what you don’t have. But if we could not distance ourselves from the pain of strangers, how differently might we choose to live?

My heroes are people who consciously add to the days of peace, fixing damage they didn’t cause – not out of guilt or penance, but from that cheerful unwillingness to wall off other people’s pain. I was fortunate enough to find many of them on this long journey and they can’t know how much they helped. Unfailingly kind Ingrid; Zale, who had every reason to quit and never did; Aggie, waiting on Frank like he was visiting royalty and making him laugh; Carter and Ann and Grace, who I can never fully acknowledge… 

I could go on and on, my notebook is full of names and stories, and some day perhaps I will have told them all, but each will always be remembered, and is already written in my heart.

Some Thoughts on Niagara Falls

Over the past two weeks I’ve started on several posts for this blog but didn’t finish any of them, not quite satisfied with the subject or how the words came out. Then this afternoon I caught part of a History Channel program about people associated with Niagara Falls. Among the barrel riders and rescuers, one story stood out – in 1960 siblings Deanne and Roger Woodward were on an outing for Deanne’s birthday when their small fishing boat was swamped on the Niagara River and overturned in the rapids. They were rapidly swept towards the edge; the man whose boat they were on disappeared and was later found dead.

Seven-year-old Roger went over the Horseshoe Falls and is the only person known to have survived that ride without any protection (he had on a swimsuit and a life jacket). He was pulled out of the water by crew members on the Maid of the Mist. Deanne, 17, was saved 20 feet from the brink by John R. Hayes, a truck driver and auxiliary police officer from New Jersey who happened to visit the park that day. Although many other tourists were watching the drama unfold, only he had the courage to rush to the water’s edge and urge Deanne to swim to him, and then caught her by the hand with another man holding his legs to keep him from going in.

The two siblings were taken to the hospital; both were in amazingly good condition considering their ordeal (Roger had a minor concussion); both were featured prominently in the news… but when Deanne asked to see Mr. Hayes to thank him, she was apparently told that as a black man he was not welcome at the hospital. The History Channel program showed them meeting for the first time since that eventful day, where she finally got to thank him in person for saving her life some fifty years earlier.

Her gratitude was exceeded only by his dignity.

Frank and I lived for five years in Buffalo NY, just down the road from Niagara Falls. But somehow we never went there until the day he was discharged from the hospital in 2009, a week after the cancer diagnosis. On the way home I didn’t get off at our exit – instead I drove the 21 miles north to the State Park. Once there, we had to ask ourselves why we had waited so long to discover for ourselves what a beautiful place it is – yes, we were busy people, but it shouldn’t take a personal disaster to make creating happy time together more of a priority.

We went to the park as often as possible through those next four months. Sometimes Frank was too sick to walk far so we’d just drive slowly through the park or sit on a bench. Other days we spent several hours exploring or just standing over the water, enthralled by its tumult and power. Our favorite spot was Three Sisters Island, where the picture below was taken on our last trip there. 

It was an immensely restorative place for us and we always left feeling renewed. Even though the park is for everyone, we felt it was our space.

I still have conflicted feelings about Buffalo and although I have friends there, it’s taken me until now to be emotionally ready to go back. My dear friends Serge and Christine are getting married later this summer and I want to be there to celebrate their happiness. And perhaps I’ll make a drive up the road to visit those old familiar places again.

Postscript: Mr. Hayes still lives in New Jersey and recently celebrated his 100^th birthday. I hope it was immensely happy and filled with blessings – his hometown of Vauxhall named him their Hero of the Century.

Learning to Fly

I'm working on something that may or may not make it here, but then I stumbled on this wonderful article from Brian Clark of Copyblogger and had to post this. 

Here it is: 10 Steps to Becoming a Better Writer.

As a kid I thought you either did things well or you didn't. Some things I could do very easily without knowing how I had ever learned them. Other things not so much. I never considered that I could perfect a skill I didn't already have, lacking the confidence to fail on the way to succeeding.

One of the things I admired about Frank was his ability to throw himself headlong into activities about which he knew nothing. In the last year of his life he was simultaneously studying for both a real estate and a pilot's license. I'd come home from work and he'd be at the computer, poring over manuals, drawing diagrams of airflow over wings, and calculating lift. 

He had a marvelously impractical nature which sometimes drove the compulsive planner in me nuts. I intend to carry forward with some of his carefree attitude, because the risk-free life might be safe, but boy is it boring!

Why Jacaranda Season?

In the weeks just after Frank’s diagnosis in 2009, it suddenly seemed that everyone had cancer or knew someone who did. Funny how when something touches your life, it suddenly becomes visible in the lives around you. Even now I’ll be out at the store or on the street and I recognize chemo pallor or signs of liver disease in a stranger; an odd sort of connection forms and I find myself hoping they have all the help they need.

What Frank had – carcinoma of unknown primary (CUP), metastasized to the liver – is both uncommon and deadly.  “Unknown primary” means the original source of the cancer can’t be found, and it applies to 2 - 5% of cancer diagnoses. Since current cancer treatment is based on knowing the cell type that first became malignant, treatment options are much less effective. Fewer than 25% of all CUP patients are still living one year after diagnosis and the median survival rate for patients with liver involvement is only 2 -3 months.

We took a hell of a win on him living for nearly two years. Not long enough by far – but long enough to get to paradise in Florida and give him more than a year of good life here despite the ongoing chemo.

We reveled in the simplicity of being alive and together. I heard a song once about “Live Like You Were Dying” and I can tell you that Frank didn’t give a wet slap about going sky diving or Rocky Mountain climbing and his bucket list didn’t include climbing mountains in Tibet or romancing beautiful young strangers, if you’ve seen that movie.

Some of our best moments were sitting on the couch laughing at America’s Funniest Videos or Bugs Bunny. Him taking a walk in the pouring rain on a warm December day, under a very big umbrella. Joking about climbing over the back fence to throttle the neighbor’s squawking parrot. Pruning our citrus trees and savoring the fruit. Listening to him practice Mozart’s clarinet concerto in A (K.622), getting his chops back after too long a break. Relaxing on the porch on a lovely evening, listening to the spring peepers while the sunset faded down to deep, deep blue.

Frank was constantly delighted by the flora and fauna here – egrets strolling through the front yard, oranges and grapefruit for free, a small startled snake outside our door, rain lilies that sprang up overnight, and the endlessly active lizards on the window screens, being stalked by the cat. One fine May day he rushed in for the camera, exclaiming about the most amazing purple tree. It was a jacaranda in full bloom, which of course we’d never seen up north. The photo he took that day is the one on this page, and I never see a jacaranda tree in bloom without thinking of him and his charming capability to get excited about little things.

There’s a predictable pace to the spring blooming season here. The azaleas are first, erupting in hot pink explosions all over town. Then everything bursts into life, with jacaranda coming for a few weeks towards the end.  When the crepe myrtle flowers next, you know that summer’s heat is just around the corner. Jacaranda season is fragile perfection balanced on an edge, transient and precious.

So when I decided to start a blog, I chose The Jacaranda Season for the title. It’s my symbol of the universal in the personal, and the personal in the universal. Physical death is universal and extremely personal when it comes close. But so is life, and the fact of a certain end should not lead to an uncertain, bitter, or resigned life.

While he was dying we both learned so much about how to truly live:

Stop postponing what you really want to do.

Don’t miss a chance to make someone you care about feel happy or loved.

Waste no energy on the stupid stuff or on mean people – poor things, they have to live with themselves anyway and surely that is punishment enough.

Only you can say what you want to do and when you want to quit.

Do the most important things and let go of the rest.

Treasure the little moments – they are what life is made of.

Be kind to yourself.

Let others help.

It will all be alright in the end. If it isn’t alright, it isn’t the end.  

6/29/2013

"So Much Unfairness of Things"

In considering Frank’s battle with cancer and losing him far too soon, I’ve thought often about the classic short story So Much Unfairness of Things, in which a young man is expelled from private boarding school for cheating on a Latin test to avoid his father’s disapproval.

The title just stuck in my mind I guess – I’d read it in Mr. Teale’s 7^th grade English class. At that time love was an impractical mystery, boys were incomprehensible bundles of noise, and I was an awkward nervous girl whose bookish shyness could be mistaken for being stuck-up or so I was told. Plus I couldn’t play softball to save my life, which was the social test of acceptability in the rural town where I’d been abruptly transplanted.

Around the same age, Frank had gone through his own awkward phase. After one too many run-ins with bullies, among them a neighborhood punk and a Nazi phys. ed. teacher, one summer he built his own Nautilus-style gym equipment and put it to good use. Come September he established his primacy by climbing the school rope hands-only to the ceiling, then settled the score with the punk. How he relished repeating that bit of triumph and self-mastery!

By the time we met, we were grown-up people with our own lives, careers and interests. He was 30 and single, I was 38 and divorced. I vividly remember the first time we met – it might sound corny but there was this little bell going ding-ding-ding somewhere in my head and heart saying “This guy! This one! That’s what you were looking for!” (What he remembered about that meeting is that I was wearing a short black dress with red tights and black boots – thank you, Donna Karan!) It didn’t take us long to figure out that the feelings were very mutual, and for 15 years we never parted without a kiss and a “Love you – see you later.” 

I don’t know if he ever read So Much Unfairness of Things; Frank’s tastes ran more to engineering, physics, and experimental science. But he had a sharp sense of justice and personal responsibility. Would he have felt sympathy for P.S. Wilkinson, who sought to escape judgment through a dishonorable act and ended up with a life sentence of shame?  Not sympathy perhaps, but he would have understood.

Life is inherently unfair at least from the short view, or we’d all be tall blond rich astrophysicist organic gardeners with Ferraris or something like that. It happens that good people die young, even very young, or are broke, or ignored; bad people live to healthy old age, or are misleadingly attractive, or win the Lotto. Thankfully the reverse is also true, there’s just no such thing as a level playing field and there’d be no game if all the players were exactly the same size with the same attributes and outcomes. Plus very boring.

But the trick seems to be finding ways to make life good anyway, as much as that brings up images of inspirational platitudes with no more depth than a $2 greeting card. Frank and I spent a lot of time discovering ways that worked for him and for us; sometimes fumblingly, sometimes in a stroke of intuition, sometimes from sheer perfect serendipity. 

And the only advice I could give to someone else living in the face of loss is to be willing to fumble, follow your intuition, and enjoy the gifts of serendipity that will come, because life is good after all.

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Postscript: In writing this, I had to look up C.D.B. Bryan, who wrote the short story I mentioned above. His son has a wonderful website at http://saintbryantv.blogspot.com/ with many photos, reviews and articles from the 67 boxes found in his father’s attic, including a fantastic piece about Kurt Vonnegut.

On it I found this quotation from the author:

“My praise for cancer lies in the gift it gave me: the gift of knowing I was loved.”

I find this both moving and very sad. Talk about unfair. 

The Day that Everything Changed

Four years ago today my life changed radically beyond anything I could have imagined. I’ve tried to write about the experience before now, but have managed only bits and scraps on the backs of envelopes, a never-shared blog with just one post, and an online journal that was supposed to send me email reminders to post in it but never did so neither did I. Technology failed me there, as did my own initiative.

Time passed, various adventures intervened and so here I am now, giving it another go. What happened? Why talk about it? What difference did it make? What difference can I make as a result?

I can’t answer everything at once, or perhaps even at all, but I’ll regret it if I never try. And one of the big lessons of this experience was the very real necessity to get up and do the things you’ve only thought about. Or in this case, lounge on the bed with a laptop and a glass of iced tea, hoping the cats will leave me alone long enough to put some sense into this.

Four years ago I lived in Buffalo NY with my husband Frank. He’d recently lost some weight and had a bad bellyache that wouldn’t go away, so was finally arm-twisted into going to the ER at ECMC (Erie County Medical Center). He hadn’t seen a doctor in 20+ years and was proud of how strong and healthy he was. Plus his mom had gone into the hospital with a minor infection when Frank was 13 and she died 4 days later, and I think he had retained a certain suspicion of the medical profession ever since.

Frank left by himself in the morning and was gone all day; he had brushed off the idea of my going too. By 5pm he still had no answers and I was very antsy, so got a ride out there and we sat in a little exam room off the ER for several more hours. He was grouchy and hungry, hadn’t eaten all day; they’d done blood tests, X-rays and a CT scan, but had given him no results or explanations. Finally around 10pm a doctor came in … I think his name was Dr. Cloud, I remember he looked like someone who went on skiing vacations, fit and tan and young, with blue eyes that matched his scrubs.

He said, “There’s something on the scan of your liver that looks suspicious; it could be an infection but you have no fever, or it could be hepatitis but you have no risk factors for that, or it could be cancer.”

The word hung in the air between us. I froze and just looked at him, my heart pounding, because I understood that this was their answer and he was breaking it gently. “We’re going to admit you and do some more tests and get you some treatment, and we’re really, really happy that you came in when you did.” He left. I looked at Frank. All he said was, “Well that sucks.”

What followed was a blur. We were both in shock. It was like stepping off a curb on a street you know well and falling 15 feet into an invisible black hole that closes over your head. I tried to hold off the dark for both of us, did the paperwork, met the nurses, got him settled, hugged and kissed him and promised I’d be back first thing in the morning, then left wishing I could climb into that bed and stay.

As I was finally leaving some time after midnight, two young people – a tall slender girl, very pregnant, and a solidly built fellow in a football jersey – were about 10 feet ahead of me walking down the corridor towards the exit.  Now, they didn’t know I was there, it was quite late, the hallway was otherwise deserted, and he could be forgiven for thinking he could get away with releasing a truly impressive fart without notice.

I couldn’t help it – I laughed out loud.

They turned around, mortified at the sight of a frazzled and entirely unexpected white woman probably the age of their mothers. The girl began to apologize, scolding him for being rude, and he looked anywhere but at me. I approached saying, “No, no, don’t apologize, it was funny - thank you for making me laugh on the worst day of my life. My husband is upstairs and we were just told he has cancer and I don’t know what’s going to happen and I am scared to death.”

She put her arms around me and prayed out loud, the first of many good-hearted angels we met on this suddenly alien landscape.

Went home, sent a bleak email to my sister asking her to call me first thing in the morning, and went to sleep wrapped up in Frank’s sheets, his pillow wet with my tears at the end of the long day where everything changed.

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Of course this was only the start of a story that was by turns terrifying, happy, exhilarating, heart-breaking and beautiful. Such is life. Such are days, since every day is an anniversary of something remembered or not. What will you remember about today?

6 June 2013