Saturday, September 29, 2007

Coping with pain

It's hard to see someone you love in pain. Sometimes, it's even harder to be around them when they are in pain.

I've been working on a story on Alzheimer's and how it affects families. How do you get past the tedium and frustration of dealing with an illness that progressively gets worse? How do you not resent someone who takes up so much of your time and resources as they slide further and further into the abyss of pain and the oblivion of their minds disintegrating and being unreachable more and more each day? It is as if they are mentally and physically moving backward through time until they are as blank and unfocused as a newborn child. The big problem is that they are still adult-sized but must still be cared for as if they fit into the crook of your arm. They don't and the emotional wear and tear can take an enormous toll on everyone around them. Taking care of them, dealing with them becomes a burden, a black hole that sucks the very life and soul out of you until you wish for the release of death. That is the extreme. Figure into that equation all mentally and physically debilitating diseases like cancer, dementia, para- and quadriplegia, and traumatic brain injuries, just for a start.

When you get right down to it, all chronic illnesses (fibromyalgia, spinal pain, chronic fatigue syndrome, etc.) exact a heavy toll on those around them until the people closest to you tire of hearing the complaints, the moans and groans, the constant aches and needs until the only thoughts that remain or getting as far away as possible, whether that be physically, mentally and/or emotionally. It's difficult. No one says it isn't. So how do you cope? It all comes down to compassion and love.

Love. Compassion. We say the words easily and often but they have lost their meanings. The words are as disposable as the emotions most of the time because they are nebulous and tied to happiness and joy and feelings of euphoria and elation. Love and compassion are, and have always been, as costly and as elusive a high as the finest designer drugs: easier to obtain and harder to maintain. And how do you love someone who is always in pain and needs more attention, more time, and more care than you are willing to give over the long haul? You just do.

Love isn't just about sexual fulfillment and the feelings of euphoria and floating on clouds. Love, true love, is being with someone day in and day out and sharing the mundane every day tasks like preparing meals, cleaning house, doing laundry, grocery shopping, taking out the trash, changing the sheets, and keeping up the yard (if you have one). It's the million little things that can get in the way if you focus on them too closely to the exclusion of everything and everyone else, but it's also caring for and living with someone in pain. It's easy at first to be compassionate when someone you love hurts. You tend their fevers, wipe their noses (or any other dripping or leaking part), clean up their messes, change the sheets, and listen to their woes and wailing and it's usually over before you get to the point of grabbing a baseball bat or an axe and ending their suffering (and yours). Ailments have a fairly short course and you can always see the light at the end of the tunnel or the dawn just over the horizon, but what if you can't?

If you can't, you begin to ignore their complaints, snipe and snap at them when they aren't feeling well, begrudge every single, solitary moment you have to listen to them or watch them decline, and you become hardened and unsympathetic. Compassion has flown the co-op. You want out and you want them to go away -- permanently. You have things to do, a life, a million tasks that you may end up having to do alone, and you do not want to hear or see or smell or feel them any more. The person in pain cannot help what's happening to them, but obviously they are to blame. But they're not.

My father took care of my grandfather when he accidentally shot himself in the face and he took care of him after his stroke when my grandmother was at work and my grandfather messed his bed when he had diarrhea. Dad stripped and stripped my grandfather and hauled him on his back into the shower to clean him up while I changed the bed. Grandpa wasn't Dad's father; he was Mom's father, but she couldn't handle him. Grandpa was six foot four inches tall and weighed nearly 300 pounds. Dad was five foot ten inches tall and weighed about 165 pounds, but he took care of Grandpa, cleaned him up, and got him back to bed.

When one of Mom's great aunts, Ann Curry, was diagnosed with Alzheimer's, Dad took care of her. As she slowly slid down into the dark abyss of Alzheimer's, forgetting who she was and everything and everyone surrounding her, she still smiled innocently up at my father as he fed her, changed her diapers, bathed her, combed her hair, and took care of feeding her. She, like her brother, my grandfather, was well over six feet tall and weighed over 200 pounds (at first), but my father cared for her as if she were his own flesh and blood. It wasn't his job but he was a compassionate man who loved his family. He didn't say the words but his actions shouted his feelings and his heart. Dad did the same for Grandma when stroke after stroke left her demented and diminished and for Aunt Joan, Mom's younger sister, who was dying of emphysema -- for years. Dad took care of them all with love and compassion and an open heart. Dad didn't complain and he didn't speak about it; he just did it.

I've heard so many people say when they ask how someone is -- an acquaintance, a friend, family -- they don't really want to hear how they are; they are just being polite. They don't care. It's understandable. They want someone to listen to them when they're ill or in pain, but they don't want to be bothered by anyone else's illness or pain.

Some of my friends have chronic illnesses and live with pain and pain after being healthy and able to move without it saps not only the body and the energy, but the soul and the heart. I listen to their families complain about them, gripe about their constant neediness, the eternal complaints and moans and groans, having to deal with them day in and day out and I'm sad for them because their love isn't worth the words they speak. The words are as hollow as their hearts and I wonder how they will feel when they're on the receiving end, when they are chronically or fatally ill and need someone to care for them. They'll forget how they felt and expect to be treated with love and compassion. I hope they are, but I doubt they will. I've seen too much of human nature to believe they will find the compassion and love they cannot find and do not have inside, but I hope.

I know how difficult it is to be waked out of a sound sleep to massage a Charley horse out of someone's calf, to shoulder someone else's responsibilities and chores because they're having trouble managing, to reach out with compassion and care and love to listen, to soothe, to offer a comforting shoulder or hand, to rub ointment into sore muscles, fix a hot and healing bath, gently soothe lotion into tissue paper thin skin when the caress of a butterfly's wing causes pain, and endure when someone sinks further and further into pain and the oblivion of a failing mind. It's difficult to watch and even more difficult to hold back the tears and the anger. As strange as it sounds, I hope and pray to be there for those I love no matter how dark and hard the road becomes because they're worth it.

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