As if I hadn't had enough of the "Terri Schiavo" dilemma in the national media this year, I had to get a taste of it close to home.
After seven weeks of radiation (and even more state-of-the-art chemotherapy), my stepmother's frontal lobe glioblastoma began manifesting itself again. I'll spare you the long version, but May was an ugly month in more than one way. A Mother's Day ER visit, a subsequent hospitalization, in and out of ICU. Desperate attempts to get her sodium levels to rise, then stabilize. Stupor, disfigurement, multiple infections.
The heavily ironic twist was that her case of the shingles - an opportunistic viral infection that took advantage of her weakened immune system - basically locked my brother and me out of the room, since we'd never had chicken pox (the same virus causes both). The most I dared do was insert my head in the door and crane my neck to get a glimpse of her.
But the most wrenching moment came one day toward the end. My cell phone buzzed with a text message: "Call me when you can." It was my brother. He was usually loathe to call me at work, so this was serious.
Cell phone in hand, I stepped out into the hallway for privacy and held my breath. "Well, I walked in on the tail end of a conference with the doctors," he said, "and [our stepsiblings] decided to reinsert the NG tube."
This was the same nasal gastric tube she had - accidentally or not - pulled out on Memorial Day. "You've got an opportunity here," the doctor told my stepsiblings when it was discovered. Much to our relief, and in agreement with her living will, they opted at the time not to have it reinserted. We comforted ourselves with the knowledge that it would soon be over.
Now, three days later, it was a different story. They wanted to give her every chance, they said. Maybe she'll rally back. Maybe.
There was disagreement in the room, but those who opposed (including the medical people) stayed silent. We would all abide by their decision, painful as it was for all of us to witness. Those in favor left town, asking that we notify them of any changes.
Hearing about the decision, I exploded. "What do they think she's going to rally back to? Why don't they think about what she'd already said she wanted?" All my brother could do was murmur, "I know ... I know."
* * *
I hadn't gone to the hospital in several days - it was too frustrating. I couldn't see her, I never knew who would be there, I didn't want to pull them out of the room to talk. But Saturday that hospital room drew me like a magnet. I didn't know what I was going to do. But I knew I wanted to at least look at her.
As it turned out, only one person was there, a relative I'd never met before. My stepsister, who had been keeping vigil at the hospital, had stepped out for a late lunch. No one knew how long she'd be gone.
I took one lingering glance and left.
* * *
The phone was ringing Sunday morning as I stepped out of the shower. "Well, I've got good news and bad news," my brother said. It happened at 2:20 that morning. My stepsister and her daughter were with her.
Her breathing had begun to change after I'd left, and every hour, they noticed new signs of what was happening. Finally, they awakened with a start, and both rushed to the bed just in time to see her take three shallow final breaths.
It wasn't until I was at church later that morning that I remembered. As I had gotten out of the car at the hospital, I stopped suddenly. "Please, God," I said desperately, sinking back into the driver's seat. "Please don't let them do this to her."
* * *
I'd prayed these desperate prayers before. For almost two weeks prior to my mother's death, I'd held out the hope that she'd come out of her seizure-induced coma. I thought if I prayed hard enough, long enough, faithfully enough, God would reach down and miraculously heal her. Such was the hope my two-year-old Christian faith clung to.
Finally, after days of little or no progress (save a brief waking that still haunts me - did she recognize me through all that brain damage?), I sank onto the couch in the living room and told God my father and I had had enough. He can't take this anymore, and neither can I, I said. And she's suffering more than both of us put together. If it's your will, take her. I give up.
The next night, she took one sighing breath while her neurologist stood over her, and then her head slumped over to one side.
Twenty-one years later - to the day - I stood over my father's bedside in the nursing home where he'd been for six months after his Parkinson's and dementia became too much for my stepmother to handle alone. His first four months there has been mostly uneventful - he was alert enough to be conversational and surprisingly chipper - but a nasty blow to the head suffered during an evening bathroom fall was the beginning of the end. I'd held out hope for weeks that, somehow, his brain would knit itself back together and, while I knew he'd never be completely healed, bring him back to at least his former level of functioning.
Now, looking at his inert body and glassy unfocused eyes, smelling the foul breath of a man who had begun to refuse all food and water days earlier, I found myself praying, "God, it'll be so good when he's not trapped in this failing body anymore."
Early that same afternoon, I got the call from my brother. "He's gone," he said. "They called me when they noticed his breathing start to change, but I couldn't get there fast enough. I got there about ten minutes too late."
* * *
I understand all too well how controversial the Terri Schiavo case was. There were mixed motives on both sides of the family (as is inevitably the case where large sums of money are involved) and way too much finger-pointing and media-posturing by everyone. But I think any attempt by one side to demonize the other misses the point.
Watching someone you've loved - as a parent, child, spouse, sibling - occupy that borderland between life and death is gut-wrenching, no matter what side of the "culture of life/culture of death" debate you're on. But these decisions, insofar as possible, belong with family and with medical professionals, not with government. Although justice can, and often should, be dispensed impersonally, love cannot. And making these decisions requires loving both well and wisely. I believe that's all God really requires of us when we are faced with what we cannot be certain of.
(I began writing this in June of this year, and I hesitated posting it for several months. The wound was too raw for a long time. What the above lacks in immediacy, perhaps it makes up for in ... something.)