To me, one of the most memorable movie scenes Jack Nicholson has appeared in is the title-begetting one where he addresses a roomful of folks in a psychiatrist's waiting room with the suggestion "What if this is...as good as it gets?" and leaves them to think about it.
I believe that sort of behavior is known in Zen parables as "grandmotherly kindness."
A special welcome to anyone who is new to The Grieving Room. We meet every Monday evening. Whether your loss is recent or many years ago, whether you have lost a person or a pet, or even if the person you are "mourning" is still alive ("pre-grief" can be a very lonely and confusing time) you can come to this diary and process your grieving in whatever way works for you. Share whatever you need to share. We can't solve each other's problems, but we can be a sounding board and a place of connection.
Link to all previous Grieving Room Diaries
When I volunteered for tonight's TGR diary slot it didn't occur to me that it would be on Labor Day, 2010. Which also meant it didn't occur to me that it would be the tenth anniversary of Donna's first transplant, a kidney/pancreas double shot of failed hope.
Ten years ago this past weekend the pager went off as we returned from a Chinese restaurant meal, and we started the two-hour drive south to the hospital.
Donna's kidney function had been steadily declining due to ill-maintained diabetes, and we had great hope that the transplant would stave off dialysis and the need for insulin. At that point we were less than a week away from the surgery to implant the dialysis catheter and her blood sugar was only partly controlled.
Holiday weekends seem to be good times for transplants--auto accidents provide good donors. Only later did we find out more or less accidentally that our donor had died somewhere in Orange County of a self-inflicted gunshot wound. Apparently holiday crashes aren't limited to the roadways.
The need for a double transplant ruled out a living donor but ironically boosted our standing on the cadaver-transplant list. I don't think a patient who needed a kidney alone would ever have had her number come up before starting dialysis the way we did.
The surgery went well--in those pre-9/11 days I even got to watch part of it through a small glass window in the OR door. A year later the hospital cordoned off that hallway as too sensitive an area to let family members roam unattended. I remember seeing the anesthesiologist checking the local paper, only occasionally glancing up at the dials.
She "rested comfortably" afterward in a sterile hospital room where I had to gown up to visit. I hoped that all would continue to go well and drove home to touch base with the family and get some fresh laundry (I'd been sleeping in the car in the hospital parking lot in a high-crime area, for which I'd later catch hell.) I came back to find an empty hospital bed and barely caught Donna as she was wheeled back to the OR to remove the failing pancreas. Bad surgical technique, and not for the last time.
That set the pattern for the rest of our time together. Hope for the best, then experience the disappointment. She lost the pancreas. OK, we could deal with insulin. Her dad died while she was in isolation--no chance of attending the funeral so we visited the gravesite later, alone. Bad reactions to the medications keeping her alive almost killed her through blood clots in the lungs. Her number came up again for a second, pancreas-only transplant, which failed about seven months later and led to five months chained to an ICU bed.
She fought to get out of the hospital only to fall and break a hip and wind up in a wheelchair. She'd hoped to walk to the altar at our wedding--with assistance but upright--and broke a foot a week before the ceremony. And sure, there were plenty of good times during those years, so long as we just took whatever happened and didn't look for more. Donna was the best person I'd ever met, but some of those disappointments hit her especially hard. All she ever wanted was "normal."
And then we hoped at least to take some mini-vacations like normal folks do. So she died in my arms in an anonymous motel room two hundred miles from home in July of 2008.
+++
There's a Greek myth, their version of the Biblical one pinning everything on poor Eve. It's about a woman named Pandora who was created specifically as a booby-trap for mankind. Literally man-kind, since like Eve no women existed before her.
And we all know about her famous box, right?
Overcome by curiosity, she opens the locked chest given to her by the devious, scheming gods of Olympus and unleashes every evil and misery on the world. Having cast humanity out of paradise by her actions, she looks into the box to find a gleaming faceted jewel remaining there: "Hope."
Yeah, that's how it works. You pack a box with every evil thing you can conceive of--death, sickness, pain, conservative politicians--and hide one really great thing at the bottom. I always keep the dessert in the garbage pail too. There's a reason why one of the most legendarily-"cursed" diamonds in history is named the Hope.
No, hope is not the antidote to misery, it's one of the chief causes. Hope is what sets you up for another fall. Because every damned time you reach into the box for that glittering jewel you'll cut yourself on it. And you'll do it again and again until you learn the lesson cleverly condensed onto a teeshirt:
"Since I gave up hope, it's been so much easier."
Yes, it does get easier to go on the further you get from the loss. If you don't hope for anything better than just...going on. It gets easier. Not better. You lose a little bit of your remaining life around the edges, day by day.
I made it through the first year after Donna's death solely on a promise made to her to that I'd give it at least that long. I foolishly told a friend about that promise's expiration and had to extend it out to two years. The one hope I did hold onto during that time was dashed each morning when I woke up. In those two years I fell down a canyon hillside alone and miles from help, and totalled my car in a seperate accident. I limped away from both. Since then I've made a commitment to outlive two other individuals, one of whom I'm executor for. The other is a fairly old cat.
But I've learned not to hope. At least I hope I have...I still have relapses sometimes.
Someone online recently asked me to explain the difference between faith and hope. I decided that faith is the unfounded belief that something good will continue to exist (or more often that it actually does exist). Hope is the unfounded belief that some horrible situation will change for the better.
"Hope" was one of the keys to the 2008 election, and I grabbed that gem with both hands, acutely aware that Donna wasn't going to be voting. My hope was that they were finally going to listen to the DFH's for a change, instead of the folks who'd gotten us into so much trouble in the first place. As someone I've learned to hate put it, "how's that hopey-changey thing working out for ya?"
(Yes, it worked out OK when you consider the alternative. At the cost of great disappointments and the potential for still greater loss ahead. We won't have an answer for another 20 years, and I won't be around to hear it when we do. As in the song lyric, "did you exchange...cold comfort for change?")
I'm tired of hope. The bulk of my life, twoscore years and thirteen, is in the past now. Certainly the good parts are. I'm not going to write the Great American Novel. I don't paint or sing worth a damn. No business acumen. I have a face for radio, as they say, but a voice for typing. Nobody's going to elect me anything. The fates won't even put a conservative Supreme Court justice in the crosswalk ahead of my car, damn them. (Gallows humor, DHS. I don't even live near DC.)
I can do little things--I've established one small scholarship in the past two years with the blood money, plus two unofficial revolving-loan funds trying to balance the unfairness of the universe a bit. Donate to some candidates but not the DCCC/DSCC. I drive folks to doctor appointments and late-night ER visits. I deliver groceries or fix plumbing on request. I'm a blood donor when my hypertension issues let me (not often) and I'm on the marrow donor list. In the end I'll be an organ donor if the time/place/manner of death lets me. I pick up the litter where I find it. Barring a lottery win that's about the best I can reasonably expect.
I think I'm paying the fare for the annual trip around the sun, at least the coach-class rate. And yes, I'm aware there are lots of folks down in steerage. For their sake I hope they didn't bring any hope along. It looks like a bumpy ride coming up at best and it'll be hard to hold on to.
I'm an atheist, and the prospect of an afterlife holds no attractions for me anyway. Really? Another life, infinitely long? I'll pass. I toy with the idea of writing an atheistic religion (got it down to just nine commandments since I have no need of the first one) but I'm a loss as a prophet and nobody's going to follow me when they find out the details. There's no pie in the sky. There's damned little pie down here and what pie there is, is unfairly distributed. You get up in the morning and deal with it, or you don't.
I hadn't originally intended to write such a "down" diary, and I count it a good thing that the holiday weekend should depress readership somewhat more than I have. Y'all can go back to being hopeful next week, I promise...I'm trying to be straightforwardly realistic here. Not everyone gets better. Before you ask, I've done the antidepressant route before, and the doctor I was assigned shouldn't be allowed near people who are in pain. He didn't notice when I went cold-turkey on the SSRI's, two years ago this weekend. (To be fair to him I didn't notice much difference either, and I spent more time with me than the ten minutes a month he was allowing for. )
Mostly my two-year trip with grief so far has been one long, unavoidable dental appointment with occasionally something worth reading in the waiting room. And once in a while some guy sticks his head in to remind us that maybe, just maybe, this is as good as it gets.
Two years and two months ago, the part of my life where I kept the joy died. She would have been 46 this Saturday. Happy birthday, Donna.