Saturday, June 27, 2009

Roses in the Distance

Lucinda Williams is singing on the radio: "Don't buy a fancy funeral--it's not worth it in the end." I took this picture of my parents in front of Dulles Airport in September 1974, nearly thirty-five years ago, more than half my life ago, a full broken heart ago, a heart broken both because of wounds it received and because of distances it enforced.

They had come from East Tennessee to Washington to visit me for the weekend, one of the few times they ever came together. With what hopes and fears, anticipations and regrets they made the trip I do not know. I cannot remember how I felt but I remember that I tried: tried to show them a good time, tried to make everything okay, took them to brunch at the Watergate, where the fine service was too formal for them, I realized too late.

We weren't entirely easy together, even during the good times, even during the best of times. The years of his drinking and their fighting had taken something out of me, something I did not know was gone, something I did not know how to replace. And on Sunday afternoon, or maybe it was Saturday because we went to brunch on Sunday, "Why don't we take a drive?" we wound up at Dulles Airport.

Where I took their picture, where I put them in their place, where the distance in my own wounded heart spread out onto the asphalt parking lot. I didn't know till the slide came back, after they had gone home, what I had done. When I saw how tiny they were, how innocent and hopeful, there for my taking, there for my loving. But then all I could do was fix them at a distance too far for touching.

This picture has stood all these years as silent accusation for what I've taken to be my hard-heartedness--but now I see something more. I see them together. They had each other and they understood, and in that they could begin to forgive themselves and were able to forgive me. I see an innocence that had not been lost in what could be the hell of our life together. It had been hell before. It would be again, yet that afternoon the broad light was both just and merciful. I could not see that till just now, through my tears.

When I first determined to write about my Mama and my Daddy in front of Dulles and wondered about a title, I considered, "What you can't forgive your own heart--may it grow love like roses on a bush." For a title it's a bit wordy, but something has grown these sad years. And its aroma is sweet.

That Wide Risky Reaching

in that wide risky reaching
we sometimes lose our footing
and find ourselves in graceless arabesques
of fear and doubt

yet discover there a dance
that is truer to the music
that calls us still
than would be a more certain stance

Saturday, June 6, 2009

Not This Time

Being disabled is damnably inconvenient. Let me explain. I use a power wheelchair, and I wear a protective brace on my left lower leg, which has a significant curvature and has already broken twice in the same place, to protect it against further damage. Before the brace, when I had to go to the toilet, I would simply pull my chair up close and slide across. No problem.

Now, however, two broken hips and the brace later it's not so simple. In fact it's not. Period. The brace rubs against the toilet in an awkward place, and after the broken hips I haven't been able to maneuver the slight difference in height between my chair and even a raised toilet. An ordinary toilet is out of the question; my shoulders aren't strong enough.

What I am able to do is use a free-standing bedside commode I keep in my bedroom. So I'm very careful to have my daily bowel movement before I leave the house, even if it means getting up two or three hours early and ingesting what I hope will be enough caffeine to get things going. I also try to balance fiber, liquid, and the occasional laxative.

For two years the Force was with me. But today my luck changed. I had planned to take a 7 a.m. Paratransit bus to San Francisco to St. Gregory's for a five-hour Chapter meeting. The meeting doesn't start till 9 a.m. but that was the pick-up time Paratransit gave me. Usually I allow myself three hours, but somehow I just couldn't see getting up at 4 a.m. so I set the clock for 4:45 and started drinking Diet Pepsi. Diet Pepsi? you say. Yes, the caffeine and the cold fizzle usually do the trick, though these days it's taking more than it used to, to get the same effect.

It was 7 a.m. and the bus arrived. Nothing had happened on the alimentary front. I wanted to go to Chapter (a twice-yearly members-only event), but even more I did't want to get myself in a situation that could well have been messy, embarrassing, and malodorous. I told the driver to leave without me.

If I'd gone and made it through without necessity striking while I was on the bus, St. Gregory's has a portable toilet raiser, which is currently on top of a cabinet. If I needed to use the bathroom there, someone would have had to lift it down for me--and I would have felt a lot safer if that person spotted my transfer (the first in a very long time) from the chair to the toilet. All this with a growing sense of urgency--nope. It didn't seem like a good idea.

I'm sorry I'll miss Chapter; it's a special day of discernment and sharing, but I'm not distraught or overly disappointed. It helps that today is San Leandro's annual Cherry Festival, which I had regretted the prospect of missing. One good thing gone, another good thing in its place.

And much of what comes with being disabled is still harder than it looks.

Monday, June 1, 2009

The Straw That Broke the Camel's Back

Or, "How To Make Up Increasing State Deficits by Cutting Programs for Poor People Who Didn't Cause the Deficits in the First Place."

If you had told me twenty years ago that I would spend the latter years of my life severely "financially challenged," as they say, I wouldn't have wanted to believe it. "Oh, I'll never be rich," I would have said, "but I'll make it fine. I'm clever, I'll be all right." I am clever, and in strange ways I'm more fine than ever, but for me "making it" has come to mean SSI and Medical and In-Home Supportive Services and weekly therapy paid for by the State of California through Medical, therapy that's authorized in six-month increments.

And now it's likely that my In-Home Supportive Services will be cut because they're "only" for domestic tasks and I'm not needy enough. Which would mean no more Anita, who has increasingly become "my beloved Anita," to clean, make the bed, cook, wash clothes, do all the necessary but seemingly insignificant chores of daily living that I either can't do at all or that would sap my energy if I had to do them on a regular basis. No more warm, familiar presence every morning to puncture the debilitating pall of isolation that drapes too many of my days.

And Don, whom I see once a week, whom I have finally begun to trust is there for me, will be there for me. We've developed a relationship that gives me structure, that helps me redress lingering deficits from the past, that helps me keep going when otherwise it might all just be too much. What would I do, what will I do, if I can't see him any more? I've heard that there are going to be deep cuts in Medical-funded mental health programs.

Now, mind you, these budget cuts have not been enacted yet. The muckety-mucks in Sacramento, who haven't to my knowledge either been asked or volunteered to reduce their perks or their pay, still have some motions to go through. And it will take some time at least to dismantle established programs. I wouldn't be surprised if there weren't a few lawsuits along the way, though I doubt they'll accomplish anything. Anita, bless her heart, has said she won't leave me bereft, will always find a way to give me some help. Don and I talk tomorrow. Maybe we can work something out.

I've been fond of saying, "Worry is interest paid on a loan you haven't even taken out yet." And I'm still worried. I'm a good enough Buddhist to that change is inherent in how things are, I remember my father declaiming, "This, too, shall pass," and I can quote St. Paul to the effect that "nothing in creation can separate me from the love of God in Christ Jesus." And I'm still scared.

Note: This photo can be found on my photostream.