XIII Ways of Looking at Cancer

With respects to Wallace Stevens

I.                    Cancer roars through my blood, devouring a life, washing away dreams, eroding hope, creating spaces for new possibilities.

II.                  They arrived with only 2 sets of clothing apiece. At the border, my government stripped away the four youngest children, sending them to the desert with someone who doesn’t speak their language. Cancer is not the only journey that’s hard.

III.                As evening falls, phone calls and emails and doctors’ appointments are past, chores and medications are dispensed with. It’s time to put cancer to bed for the night.

IV.                Cancer, a chaotic explosion of cells, yet treated in a linear process, every actor constrained in their own grey-walled silo.

V.                  The healing, quiet horror of a Cancer infusion center. The terrified about-to-be-transformed line up to be processed like so many cans of tuna.

VI.                The “manners” of cancer constrain. Friends look at the tumor on my face, tactfully NOT asking when it will pop. But I can see the question in their eyes.

VII.              Cancer, the common American Experience, coming soon to a household near you. 2-for-1 pricing available.

VIII.            Daily Specials at the Cancer Diner

·         Chemo

·         Radiation

·         Gut support

·         Exercise

·         Steroids

·         Missing body parts

·         Mind/body healing

·         Acupuncture

·         Anti-nausea meds

·         L-glutamine powder

·         Drastic surgery

An all-you-can-eat Buffet.

IX.                15 years ago I wished my life was more vivid.

Cancer granted my wish.

Foolish mortal.

X.                  Cancer…Can we talk about something else now?

XI.                One morning I awoke to crop circles carving out bald spots on my head. The next morning I discovered I’d rubbed off my mustache in me sleep. In a fit of aggravation over the general untidiness of it all, I shave my head. The good news is I only shave weekly now. And I get to wear a fabulous hat!

XII.              The New Normal, a moving target I’m not all that eager to hit. I liked the old normal better.

XIII.            A game of chicken, played by adults, the chemo and my body race down a treacherous path, each trying to force the other to crash and burn.

Anniversary Issues

Originally written in October, 1985 for RECONCILE, the newsletter of Lutherans Concerned Chicago


This month Doug and I celebrate our 15th Anniversary of life together. In keeping with the current Evangelical Lutheran Church in America definition of gay love, we date our anniversary from our first orgasm together, rather than from when we decided to make a commitment to each other. But however you figure it, I'm amazed that it's been 15 years. I don't know what's made it work, but I do have a "felt-sense" about all this which I'd like to share with you.

SHOCK is my first reaction. "How did it get to be 15 years already?" It seems like just last week we were having beers at Broadway Sam's and lamenting over our siblings' table manners. Now, suddenly, we have a house, a dog, mutual friends, and a whole pattern of life together. Fifteen years ago we couldn't imagine what sharing our lives would be like. Today we can't imagine what not sharing would be like.

SECURITY is another reaction. This one is bone deep. I am loved and loving. I am not alone as I face life's challenges. For me the image of Christ as Lover is vividly incarnate in the love and acceptance I find at home. Over the years we've fought and loved enough that we've come to terms with the fact that we are who we are. I know that he will never be able to find things in the fridge, and he knows that I'll always hate working on cars. We also both know that our relationship is resilient enough for us to have a serious fight about something and still come out o.k. at the other end.

MEMORIES flood back as I think on this: Our first apartment together, and the night the dog rolled on the honey jar and then tried to shake it oft. Buying our first house, and building the hot tub. The first Christmas with my family after our relationship was out in the open; the his & his gifts we received from my siblings that year. Memories of hard times and the loss of friends. Memories of punks throwing rocks at us outside a gay bar. Memories of taking Doug to a Lutheran church on the Sunday the pastor decided to preach against homosexuals (so much for evangelism). Lots of quiet, nurturing memories of Doug's Saturday brunches, and coming home after a long day to find homemade stew waiting. Warm arms embracing me at night when I wake from a bad dream. A lot of what has made this relationship so spectacular for us has been very mundane. Many of God's blessings are.

Lots of those memories involve other PEOPLE: friends like Michael, MaryKay, Bill & Dennis; hundreds of folks from Lutherans Concerned; Maywood House Church; friends needing help, and helping friends. For us, at least, this wasn't a two-person event. It took the involvement and support of family and friends to maintain us. I'm grateful for them.

The CHANGES in the community at large are striking. In 1973, we knew one other gay couple. They'd been together three years. In the gay male community, being in a relationship was hardly politically correct. Many were advocating single promiscuity as the correct gay response to straight marriages. Many of those in couples (gay or lesbian) were still heavily into role playing, with one clearly the husband and the other clearly the wife. Our models for a life together were limited, flawed, and not even supported among gays and lesbians. Dignity was just starting, Lutherans Concerned didn't exist, Chicago Gay Alliance was beginning to collapse and Horizons not yet begun. If you wanted to meet gay people, you went to bars, baths and bushes. Now there are many organizations and places to meet. Coupledom is on the rise, and there are multiple models for relationships. Some people in the church are sanctioning Blessed Unions. Couples today have a host of new options and a host of new models.

I'm PROUD of the life Doug and I have built together. That life includes the relationship between the two of us, but is also inextricably involved in the life of the church and of the lesbian and gay community. I'm proud of how we have contributed to the growth of options.
What comes in the next fifteen years? God only knows. More changes, more growth, of that I'm sure. If we had kids they'd be just emerging into adulthood. The U.S. is a better place for our lesbian and gay youth now than it was fifteen years ago. How is it going to be in fifteen more years? Will he still love me when he's old and gay? Will he have learned how to do the ironing?

Purple

Purple, the color of New Mexico hills at sunset, of developing bruises, of Elizabeth Taylor’s eyes.

Purple highlights in a glass of Pinot Noir, shared at twilight by a field of lavender.

Purple, the color I was never allowed to paint my bedroom, and a clothes color so outrageous that they didn’t even make mens' shirts in it. Now it’s the color of four shirts, two jackets and multiple ties.

Purple prose, purple toes, and a Purple People Eater story that used to get the kids from Chicago half way to Fort Wayne.

Purple, the color of prayer ascending to heaven in a cloud of incense, and the color light waves turn just before they reach frequencies the eyes cannot see.

It’s a chameleon sort of color: sometimes cool, mysterious, calming; sometimes loud, vibrant, even violent. For me, purple always has a smell…of grapes long pressed, the cool morning mists in the lavender fields of Provence, and the bright artificial smell of grape Nehi, spilled at a family BBQ in Grandma’s back yard.

Purple takes me places I like to go.

Lessons Learned from Cancer

·         Go with the flow, you are not in control

·         Learn to dance with Uncertainty

·         It’s your life and time. Decide what to do with it.

·         Life is short, though days after chemo may be long.

·         Be gentle with yourself, ‘cause Cancer is hard work.

·         Accept the love, and the unexpected kindness of strangers. They need to give, and you ne4ed to receive.

·         Life is short, don’t waste it on fools and those who make life toxic.

·         Sitting on the patio, A quiet sunny day with a cooling breeze and no side effects acting up: a blessing.

·         Having Cancer, like being visibly pregnant, triggers the most bizarre responses from friends and strangers.

·         It’s not over ‘till it’s over.

Toward Nightfall, the Cancer Comes

The day is filled with chores – finding health insurance, making doctor appointments, paying hospital bills, ordering meds. A whole day spent on the bureaucracy of medicine. By early sunset I’m beat. Sitting in my recliner, as the room grows dark, watching some B-grade movie, the cancer comes.

It always hurts more in the evenings, creeping in with little twinges and then large jolts of pain, stretching the skin on my face until I think it will pop. Tonight it’s the worst it’s been in months. I debate ‘upgrading’ from ibuprofen to some more powerful, mind-numbing pain killer. I opt instead for another mind numbing movie, and some inhaled “medication” from the local dispensary.

Toward nightfall, the cancer comes, pushing out other thoughts, other feelings. I spent all day on Cancer’s administrivia. I want to be done with it, take a break, find some joy. But it’s evening, I’m exhausted from coping.

And then the cancer comes.

Expectations

Growing up in the public eye, we kids were trained to present a model family. "What will people think?" was a powerful force in managing our behavior, expectations, demeanor. Further, we were always to be in the 99th percentile...academically, of course, but also professionally and even morally.

When I came out in the 70's, there were strong expectations about who I was/should be...from the straight community, but also from the gay community. Neither set of expectations was useful. I learned to build a life regardless, conforming to my own expectations, making ethical, interpersonal and life decisions without benefit of a model or applicable expectations, and letting go of the models of my childhood.

Boy was that good preparation! Now I'm again in uncharted territory with only the crinkled road-maps left by those who've traveled before me. They place no judgement on me. Perhaps I won't judge myself to harshly. After all, cancer doesn't work with percentiles. Everyone is different.

Time

Now that I'm "disabled" I have "free" time. An appalling amount of it is spent on medical necessities, but outside of that, the days get long. I wasn't prepared for this freedom. This is MY time now. Suddenly I have time to do all those things, whatever they were, that I always wanted to do. What were those dreams deferred? What new life do I build with the time I have now? Will I fill it with trivia and chores and "I don't have the energy" and "I'm embarrassed to out in public with side effect X, or Y, or Z?

End times, like beginning times, are delicate things, fragile yet inexorable. It's a cliche, but end times can focus the mind. Or at least I hope they do. I've fulfilled my "mission if life", so maybe now it's time for all that fun I deferred for "more worthy" tasks.

Now time is a gift...
- for fun times
- for people times
- for renewed dreams

I don't have to please anyone else, impress anyone, answer to anyone. I'm no longer on 7x24 call. I'm not leaving responsibilities undone. So, what Do you do with freedom, with time?

Can I pot more, visit friends, finally de-clutter the house, check out new cuisines, learn Californian gardening, learn to sail on the ocean, lie in that hammock that's been reproaching me from its stand?

What can I do with this found time?

Let's find out.

Before & After

Before cancer, I was worried about living too long...we're a very long lived bunch, so I needed to have resources to last to age 95. And, since I expected to live long past 65, dreams were deferred, held in abeyance, kept in my hope chest awaiting those long years of retirement.

After cancer, my future is one day, one treatment cycle, long. Never mind what I'll do in my 90's, what can I manage to do this hour, day, or week? But I no longer worry about outliving my savings.

Before cancer, I worked long hours doing whatever needed doing, confident I could power through any momentary tiredness.

After cancer, I conserve energy,  hoping to get an entire gate painted in one session, knowing I'll need a nap immediately after.

Before cancer, life was about doing things, going places, outward focused. After cancer life is inward focused, about being, experiencing the moment with more intensity, experiencing relationships, reconnecting with family, soaking up the love of friends.

Before and after, life is about choices...of people. actions, experiences.  But after cancer, the choices are scarier, more exciting because more critical, and more intensely, authentically mine.

Before cancer, I had responsibilities.

After cancer, I'm free.

Deo Gratia

From the 70's to the 90's I was active in Lutherans Concerned, an organization advocating for LGBT people within the Lutheran church. This work included a series of articles for the Chicago and National publications of LC. I plan to post some of those articles, and this is the first such post.  Reprinted from Reconcile, Lent 1989.

DEO GRATIA

He pulled up in a Jaguar convertible, and got out wearing the latest Giorgio Armani suit. The others waiting at the airport shuttle station watched with envy as I threw my suitcase in back and got in. He looked tan and fit and beautiful and gay, and I was intimidated: Gorgeous blonds driving Jaguars are a little out of my league. This wasn't what I'd expected when I told him I was flying in to visit. When he moved back home a year ago, I didn't expect to see him again alive. He'd had PCP all winter, and had many of usual symptoms of AIDS: night sweats, nausea, shortness of breath, weight loss. hHe’d been diagnosed with ARC a year earlier, was depressed and drinking heavily. We'd talked by phone weekly, but he avoided talking about his health and when we discussed my upcoming visit, his responses were odd. I expected something wrong, that he'd be sick, emaciated, bedraggled, driving a beater. What a relief! He was healthier and more relaxed than I was. 

We went back to his apartment (pool, private patio, fireplace) and began to catch up. Turned out the Jag belongs to his boss, and he was relaxed via tranquilizer: he was nervous about my visit. But we're still friends. At dinner at the local gay restaurant he shared a little more. At first he was cautious, feeling out my reactions, but as the evening wore on (and the drinks took hold) he told how his new job is less stressful, his cell count is much better, and he has a new boyfriend. The boyfriend is beautiful, but with KS and too ill to join us for dinner.

After dinner we went to the disco. In the old days, you'd talk about who was hot, and who was sleeping with whom. This night, as we greeted people (he seemed to know half the bar) he told me who was on chemo, who just got out of hospital, who he knew from the AIDS hospice, and pointed out a guy who'd been HIV positive for 7 years but was doing great. We talked about his hope for new treatments, and the importance of positive attitude. All this wasn't a scare tactic, or "poor me", just his day-to-day gossip, living with reality. We also talked about our work, mutual friends, his years volunteering in Guatemala and my work with LC, and his horror when he realized that at age 29 ³/4 he didn't know the words to the dance music.

As we got ready to go home, a moment of truth arrived. He'd been reluctant to put me up because he had only one bed. I'd been worried, too. In our circles "sleeping together" is often assumed. I was afraid to say no, and didn't want to say yes. He said no for me. For him it's a moral issue not to put people at risk, so he only has sex with other HIV+ guys (like the other volunteers at the hospice). He wanted to make that clear up front. On the other hand, he would cuddle…and cuddle we did, and talk, until 4 a.m.

We talked of lovers he'd had, and his volunteer work at the hospice, of his "dumb blond" image and his political activism...of his life. We talked of his health and what he was doing to maintain it, and of his various symptoms. We didn't talk about death, but about life. We didn't talk about God, though God was present there.

In the morning, he lent me a robe he got from a past resident at the hospice. During brunch we watched people leave mass at the church across the street. "It's amazing how many guys are Catholic and you'd never know it. I've been to more funerals there." After brunch we visited the hospice. Only three beds for one of America's largest cities, and not church related, that's for sure! He dropped me at the apartment and went to visit his sick boyfriend. Two hours later he called: his friend was alone and real sick, he'd be a while. Two hours later he called again; the boyfriend had 104⁰ fever and was delirious. They didn't want to go to the hospital, it wouldn't help.

I didn't get to cuddle that night, and when I left for work the next morning, he still wasn't home. We've talked on the phone, but I haven't said goodbye. It's premature. And I haven't said thank you, to the "dumb blond" who, in the midst of death, through service, teaches life.

Lent, 1989 

David Kieschnick Coordinator
Lutherans Concerned/Chicago

Silence=Death