To be present. To be present in observing the battle for life. To be present in observing someone you love fight to stay alive.
It is likely that descriptions of such an experience wax ripe with platitudes, “s/he is so brave.” “The sun will rise after the storm.” “I am a turtle and so are you.” [Okay, I’m kidding about the last one.]
I wouldn’t know, really, about which platitudes are shared. I haven’t spoken honestly with many people about what it’s like to be present while someone you love slowly, then at times in sudden bursts, dies.
I do know I’ve been told, again and again, that I’m lucky to have this time to spend with the person I love, as they fight. The offerers of this force-fed “be grateful for what you have” are not wrong. They’re not. I am lucky to have extra time. They’re also not altogether right. Because what is it they think the time is filled with? Leisurely park walks and picnics? Laughter over popcorn in movie theaters? Life as we knew it? No. That is not what being present in observing a battle for life is like. Not at all.
Perhaps more sufficiently described, observing a battle for life includes the following unspeakable truths:
Dying of a horrible, incurable disease smells. Not in the “gee, that stinks” way. It literally emanates puzzling and altogether dehumanizing odors. It smells and we never talk about it. It’s the smell, the chemotherapy wafting from pours, the vomit, that stay with you when you attempt to process what is happening. It’s the smells that keep you awake at night. It’s the smells that drive me to clean with never-before-seen fury. Dying of cancer reeks. And it is a terrifying reek.
Fighting for a chance to prolong life sounds like the periodic beep-chush-beep-chush-beep-chush of slow release chemo through a portacath. It sounds like a body being slowly poisoned: moans escaping clenched teeth from a dark back bedroom. Fighting to stay alive sounds like the empty reverberation of a wall clock, tick-tock-tick-tock, filling the otherwise expansive hours spent dozing like sunbathing cats.
Observing the end of a life tastes bland. The food at the end of your life is sugar-free jello and lukewarm vegetable broth in styrofoam cups. It is gastric tubes protruding from nostrils. It is a delicious meal ingested and then torturously digested over the subsequent hours, observable through moans and vigil held at the ‘porcelain throne’. There is no decadent series of last, or otherwise favorite, meals when slowly dying of gastro-intestinal diseases. There is only, “you must eat, you must try.”
Witnessing the end of life looks like a pale, bespectacled, sloppily bed-headed pajama party. It looks like showering every third day. It looks like the sun slowly shifting its shadow through rooms as it parades across the sky, hour-after-hour, in the quiet. It looks forever like four PM, the hour between what could have been a day’s work and before the night’s rest, my least favorite time of day, the loneliest hour invented.
The observation of suffering feels. It simply feels. It feels like the impetus that caused me to temporarily lose my mind earlier this year [though not temporary enough to keep my entire universe from imploding]. It feels like the straw the broke me and subsequently the straw upon which I am rebuilding. It feels like the comments you can’t forget, proffered during your blaze of imploding glory, “why are you letting yourself fall apart like this? Everyone’s parents eventually die!” It feels like the reason you drank to black-out for months and consequently the reason you no longer drink, at all. It feels like, well, a cancer that runs through everything you do, pre-and post- razing your life to the ground. It feels. But, the feeling is no longer too much to handle, no longer too much to face. It now, just, feels, thrum-thrum-thrum, like a beating heart: “I’m-still-here. I’m-still-here. I’m-still-here.”
Observing someone battle to stay alive is something we don’t talk about. And, in small ways, the observers feel parts of themselves slowly dying, too, in the silence. For, in every minute of every unchanging day, the world continues to no longer be recognizable as your new adjusted normal slips away again, and again, and again.
My family’s experience is at once entirely un-unique and entirely never-before-witnessed. It is, at once, a completely survivable experience and one that threatens to tear us to shreds. It is life, the rain hammers around the experience so we cannot focus solely on coping with The Dying, life is compounded by divorce and unemployment and confusion and car wrecks and devastation. It is also surrounded by, and survivable because of, love. So much love. I was never aware of the love that surrounded me and my family, because I never so openly accepted it. Now, simply put, I cannot survive without it. So, yes, please don’t feel sorry for us, but thank you, oh my, thank you, for loving us and teaching us how to accept that love. Thank you for propping us up, keeping us awake, keeping us alive. Thank you.
May we all speak with honesty. Thank you for hearing mine.