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

The Wrought Iron Fence

After my sophomore year of college, I had a job doing maintenance on a huge 19^th Century mansion in the University of Chicago area. It is now, incidentally, the Chicago home of the Obama’s. There was a wrought iron fence surrounding the double lot, perhaps 1500 feet of fence. My job included painting that fence. Maintenance had been deferred so long that the paint wasn’t just flaking, it was bubbling. And some places it looked just fine.

But if you were to poke that fence, you finger could go right through the metal. The corrosion was hidden, invisible under those many layers of paint, silently destroying the fence.

So, too, this carcinoma, eating away inside, silent but persistent. Every once in a while, the corrosion breaks out, pushing up a bible and breaking into the light.

Scraping that corrosion out only goes so far. Burning it is only a temporary fix, for it is deep in the substance of the fence. Slowly, individual bars corrode through, bend, and then suddenly, with no more than a touch, crumble away and leave a gap where there used to be a protective boundary, leaving a hole in the fabric.

Is than an opening? An opportunity? An entrance into some unguessed reality?

Or is it just loss. Maybe which of those is my call.

Fear

My confirmation verse: "Yeah though I walk through the valley of Death I shall fear no evil, for Thou art with me."  A verse I picked at age 12, now applied 50 years later, isn't quite as bright and shiny as when I chose it.

But I am afraid. Fear goads to action, or paralyzes into inaction; fear is rational and irrational. That kind of dichotomy, for me, points to one of life's "Mysteries", those powerful truths beyond the logic of bright sunny days. Mysteries shrouded in the murkier parts of the spirit, but still a critical part of being alive.

Fear goads and paralyzes. I'd opt for the goad, but accept a temporary paralysis, because fear is a process, a movable feast, a waystation on the journey.

I embrace my frightened ten year old, but I'm not ten any more. I have mental and emotional resources now I didn't have then.

Fear is a waystation on the road to hope.

Getting Diagnosed

I was at work. My company had been bought out 2 weeks before, and my job was at risk. Further, we were swamped at work. My cell rang, and, seeing it was my ENT, I left the conference room to find out my biopsy results. I was hoping that ll those "hmms" and "uh oh" noises he made during the exam were wrong. I waqs already exhausted from the workload and scared for my job, and didn't need an additional problems.

The doctor told me the biopsy was positive, but the cancer was small. Probably surgery and radiation would be prescribed. he'd schedule me with an oncologist/surgeon. It felt like another body blow...one of many in the last 10 years. I kept soldiering on, but how long could I do this?

I went back to the conference room, packed away my panic, and resumed leading the meeting. I have no idea what the meeting was about.

Another major life change was about to hit me, will he nill he.

Catching up on life events

Wow! The last time I posted was after radiation. A lot has happened since:

• In 2011 I switched jobs, to the best job I'd had in years
• In 2012, I started looking for a surgeon who could fix the scar tissue in my mouth. The scar tissue only allowed me to open my mouth a little, not enough to eat a grape unless I cut it in half.
• In 2013 I had surgery on both sides of the jaw, and also had the scar tissue removed. Months of painful physical therapy followed.
• In preparation for the surgery, since I'd had radiation, I took 30 dives in a hyperbaric chamber, to promote the growth of blood vessels in the radiated area. Unfortunately, that  process seems to have permanently damaged my eyes.
• Unfortunately, the surgery site never quite healed...a new cancer spot formed.
• Two more surgeries removed cancer, and also the teeth and bone of my right jaw.
• The cancer came back. My sugeon suggested removing my jaw and the floor of my mouth. But he also said the entire field was active with cancer. 
• Further, it looks like this cancer is caused by environmental factors...pesticides, chemicals, etc. in the food. So he recommended I move to a plant-based, no animal product diet like macrobiotics or a vegan diet.
• In May of 2014, I switched cancer doctors, and the new people gave me 12-18 months to live, and said there was no use operating any more, and no way to do more radiation.  So, chemo.
• I had chemo all summer of 2014, but it started to fail after Labor Day. Now we are looking at tougher chemo options. And I'm looking at quality of life versus length of life trade offs.