7/22/2008

Loss

When it happens, it's often unexpected but always permanent. Loss changes us. Sometimes it occurs in small, maddening forms. I had forgotten my password to this blog, for instance. It was seemingly irretrievable, floating in the ether, and so was a form of communication that had become important to me. It frustrated me to no end. And the more I fought to try to remember the magical passkey that would get me back here, the further it buried itself in the recesses of my mind.

For months as I tried to fall asleep, tossing and turning in the bed, I thought about topics and ideas I'd like to discuss here, if only I could retrieve that crucial information from my grey matter. Only when I relaxed enough to almost forget about it did that magic code reveal itself to me.

This past calendar year has offered plenty of loss. Tonight I touched base with loss again, an entity I'm starting to think of as some sort of personified nemesis. But this was no mere password. Instead, I met up with an incredibly dear friend of mine. This is a person who I don't get to see nearly enough, and even when I do, I feel like the time I spend with him is going to be cut short very soon. Because he's dying of cancer. And each time we meet up, I try my best to savour each moment, committing as many seconds to memory as I can, knowing that this could well be the last.

Pancreatic cancer was new to me when he finally revealed his diagnosis. I was one of hardly a handful of people that he's told. I wasn't the first. I might have been the last. He came to me after he told his only family member and to this day I know the only reason he reached out to me is that, in telling her, the reality of death working its way through his body had become all too real.

I researched the disease immediately and learned that, like cervical cancer, this is something that quietly takes over one's body and is, in effect, a death sentence. I don't claim to understand any of its brutal nuances. I only know that pain management is his only available option and my friend takes a great deal of pride in hiding his pain. But when you know him well, you can see the "bad days" in his eyes. When his eyes don't give him away, his killer is often physically manifest when his calves swell to three times the size of his ever-diminishing thighs.

And so when we met up tonight, we hugged long and hard, as is his wont. It's a little too much physical affection for my usual comfort level. But this is his way. And as I do with close friends, I acquiesce to his native tongue.

The first thing I noticed tonight was that I could feel his spine through his shirt as we wrapped our arms around each other and embraced for a full minute or more. I immediately lapsed into a very seldom used maternal mode, bitching that he was too thin and asking if he was eating. He told me that he's been participating in drug studies, lacking both health insurance and any sort of effective treatment options for pancreatic cancer.

A part of me was thrilled that he was involved with any sort of drug study. Because there are no other options. And so the fact that he's considered the walking dead gives him entry into the world of human lab rats. And for a moment, I thought, this is where being the working poor and half-dead will actually help---he might be one of the few people on the forefront of getting some sort of longevity, beyond the usual 12-24 month prognosis.

Perhaps even more so because he's gay, I have a sense of deja vu, thinking of days before "the cocktail" became an increasingly effective method of keeping older friends alive. Not cured. Not entirely healthy. But alive.

But these studies are often a panacea at best, and at worst, contribute more and/or worse side effects than the disease itself. My friend told me that his last round of experimental drugs resulted in constant vomiting. And for a person who has a really great day when he has the appetite and/or constitution to ingest 800-1,000 calories in 24 hours, this is not at all a side effect that he can afford.

I listened, silently, attentively, in shock and admiration at his courage to fight for his life at such an expense. Also in quiet awe, my brain processing this new information after nearly a year of continuously worrying about his health. While I've had glimpses into how hard this must be for him, I've also known there was so much that he was keeping from me. And this was a piece of that secret life.

As he told me about the next round of drug studies in which he would participate, his body started to heave and convulse as he murmured quiet expletives. It was like watching a woman in labor breathing through a contraction. He had no control of it, was consumed by pain, and yet all too aware of his public display. I've never seen him like this. I was frozen, trying to think of what I could do to alleviate his pain, as I realized that so many of his private moments are spent like this.

I sat by, completely ineffective, as my friend collected himself. Still obviously in pain, he began to profusely apologize to me for having made a scene. I sputtered, trying to say something, anything, that made sense, as he continued to apologize and berate himself for losing control and making me feel uncomfortable.

This--what to call it?--graciousness is characteristic of my friend. Most of us, myself included, would not default to apology in the grips of such inordinate catastrophe. Especially one that alters every aspect of daily life. Yet he was mortified by this display of his own vulnerability, and truly concerned that he had scared me.

Nothing I said would placate him. He continued to babble apologies. Finally, I put a hand on his now very small thigh. I stared into his eyes and told him something that only a handful of my friends know, because it's not something I talk about anymore.

My father died when I was young. He was a tall, handsome, adventurous and highly intelligent guy. One day, he felt...not sick, but "puny," as he called it. The feeling continued for several weeks. Finally, my mother forced him to go to the doctor. The doctor ordered tests. And the hospital staff that read the results called my family, sans only me and my pops, into a room to let them know that he had terminal cancer. Inoperable and untreatable. But they weren't going to tell him, because they feared it would only hasten his demise.

My father quickly morphed, physically, into a mere shell of himself. The only thing I've ever seen to compare his physical stature are photos of Nazi internment camps. He was skeletal. I remember at one point his knees being his most prominent feature.

My father died almost exactly three months to the day from that fateful meeting my family endured at hospital. It was a Tuesday. I've long since forgotten the date, but I somehow know the day. My mother was several hours late in picking me up from school and my private school administrators all stayed well past their working hours to uncharacteristically swoon around me, knowing that when she did arrive she would tell me that my small world had changed forever.

It's difficult to describe how I reacted. I was intelligent enough to know that this was coming, although no one ever told me in preparation. But I was also young enough that I was still learning what "Tuesday" was. Because I was still discovering my world, without preconceived notions, my father's death was probably much easier on me than it was for the adults in my world.

The following years were a different story. I always answered honestly and comfortably when anyone asked about my father. But my answer that "my father died" caused great and obvious discomfort to whomever had asked me a benign or pointed question. The immediate response, one that I grew to hate, was "Oh, I'm so sorry!"

So I found myself comforting people. Constantly. Strangers. Acquaintances. Fiancees of sixth-generation family members at dinners I didn't want to attend in the first place. And what I learned in those years was a greater loss than even losing my father. It was a loss of normalcy that I didn't know I lacked. I mourned my father much more in those years than I ever did during the adjustment period after his death.

For decades I had to comfort people, some well-intentioned and others who weren't so much so, because they didn't know how to deal with my father's death, despite the fact that they never knew him. Growing up, his death ultimately became most significant to me in this way---that I had to constantly apologize to other people. In these settings, my loss was diminished or negated entirely by people who merely who felt uncomfortable.

Tonight, I told my friend this story, with one hand on his leg and another on the side of his face. And his face softened. He no longer felt the need to apologize. I hope he no longer felt embarrassed. What I do know is that he understood the point of my disclosure.

I finished my story and looked deeply into his eyes, saying slowly and clearly, "I grew up having to make up for things that adults around me didn't understand. Their obvious discomfort, shocked looks and prolonged silences meant that I had to comfort them. And it frankly pissed me off. I won't lie to you and say that I know or understand what's going on. But I will never, never, make you feel like you have to comfort me as you go through this."

As I said this, his cab arrived and slowed to a stop behind him. He climbed into the backseat, his normal grin restored. He reached out for a hug and as I leaned in and embraced him he kissed me on my cheek. The cab drove off and I was once again left with the feeling that this might be the last time I see my friend. But I know we both got something we needed tonight--no apologies.

4 comments:

Akubi said...

For decades I had to comfort people, some well-intentioned and others who weren't so much so, because they didn't know how to deal with my father's death, despite the fact that they never knew him. Growing up, his death ultimately became most significant to me in this way---that I had to constantly apologize to other people. In these settings, my loss was diminished or negated entirely by people who merely who felt uncomfortable.

So true. When I was 8 my dad died suddenly and I had a very similar experience.

kndmanz said...

Aspeth, that was a very touching story. Thank you for sharing it with us.

What-I-Found said...

I am sitting here so moved by your story.
I am glad we get to hear your voice again.

Dan from Madison said...

Long time lurker. What an unbelievably beautiful post.