~ Life, death, and the final days of struggle with ALS ~
The moon is down - Shakespeare
Silence
When he would cry, he was silent. His face was not unlike a newborns – scrunched and folded, red, swollen, mouth wide open and wet, eyes tight and for that long, breathless moment – no sound. But with John, there was no bloodcurdling scream following that terrible pause. Like Edvard Munch's painting, John's scream was silent. And as I learned, the silent wail is far more horrific than the audible.
Hands
"nobody, not even the rain, has such small hands" e.e. cummings
What I noticed first about John were his hands. They were the most beautiful hands I had ever seen; large, angular, sculpted as if carved from stone. They were lovely. At the end, though, his hands became foreign; someone else's hands had replaced his once strong ones.
Now, these hands were small and thin. They were white, almost a bluish white really, long and narrow, without muscle or strength; more like a woman's hands, fragile and soft. They lay slack at his sides or wherever he asked me to place them. On the tops of his thighs, he liked them there, warm. He laughed once at how rough and strong my hands felt now, his being so very sensitive to their touch. So, as I once again moved his paralyzed hands I was even more aware of their delicacy, of the strange beauty in their lifelessness, their almost ethereal sheen, and I tried to remember what they looked like so long ago, strong, able and pulsing with life.
Life, now
Can't walk, can't move, can't dress myself. Can't speak, can't swallow without choking, can't pick up the cat, can't go to the bathroom, can't blow my nose, brush my teeth, scratch an itch. Can't say hello, can't say I love you, can't play my guitar, scatter birdseed, touch your skin, hold your hand, can't say it will be okay.
Can barely smile when I want to laugh. Can still cry silent, wet tears, but without sound. Can nod my head but with some pain. Can try with all my might to communicate my gratefulness, my love, my sorrow, my friendship and, my will to live. Can be held without holding. Can accept a loving embrace with much gratitude but even greater loss. Can close my eyes and dream of better times. Can dream of limbs moving freely and fluidly, without pain. Can dream of running, of making love, of grasping a hand, moving my arm around a shoulder, pulling up my pants, lifting a fork to my lips, swirling wine in its glass, stroking the cat, peeling an orange, strumming strings, turning the page of a book, brushing the hair from your eyes – all things good and worth remembering. Can still love and be loved.
But even that cannot make life worth living when you know it is time to say No More. When the reality of the Cant's overweighs the memories of the Can's, and the unbearable pain makes even the most beautiful of past Can's seem blurred and harder to recall. Then, the final strength comes in the decision to let go. To let go of living on memories. To let go of the faces you love so deeply it feels like a swift kick in the gut; to let go of all earthly things that once were beautiful and held hope, all you knew and cherished. To let go of all that one knows, completely, without reservation; to give way to the unknown and say goodbye to all familiar and warm. To close one's eyes and embrace what comes next with dignity and grace and the knowledge that you accomplished all that was truly important – to love and be loved and to be good.
Then sleep comes naturally, thick with Can's. Forever awaits in some new place perhaps not so far away after all. So tired of all the Cannots. So ready to toss them aside; to shed this heaviness of skin and bone and all those memories and swim with light, strong limbs through weightless clouds. I've let go because I Can. It is the last thing that I can do.
Care
"John, you okay?" I would call out from another room, just to make sure. "Yes," he would answer, so small I could catch it in the palm of my hand.
Flight
"A robin redbreast in a cage sets all heaven in a rage" William Blake
Many times, I felt like that robin. "That's me," I thought, "a trapped bird." A free spirit, barely still, but free enough to feel the bars, on the worst of days, the trappings of all that responsibility, the losses, the corners that were getting closer and closer each moment. And where would I have flown had that cage door been opened? Where would my wings have taken me? I would have probably circled the rooftop, the yard, flown high above the cove and reach, taking in the fresh bite of salt air, the smells of the earth, the warmth of the sun across my feathers, hovering in mid air as I gazed longingly at the horizon, then quietly, resigned by the pull of my own heartstrings, I would have flown home, to John, from where I began.
A native Californian, Jan Baumgartner is a freelance writer currently living in Maine. Her background includes scriptwriting, comedy writing for the Northern California Emmy Awards, and travel writing for The New York Times. She has worked as a grant writer for the non-profit sector in the fields of academia, AIDS, and wildlife conservation and anti-poaching for NGO's in the U.S. and Africa. Her articles and essays have appeared in numerous online and print publications in the U.S. and internationally, including the NYT, Bangor Daily News, SCOOP New Zealand, Wolf Moon Journal, Media for Freedom Nepal, and Banderas News in Mexico. She's finishing a memoir about her husband's death from ALS and how travels in Africa became one of her greatest sources of inspiration and hope. She is a Managing Editor for OpEdNews.
omg, thank you for this BEAUTIFUL piece! (My rating: 2 kleenexes - so far! It will probably be 3.) And through your magnificent words I can see the other side - while my thoughts and feelings after my husband's accidental death were so similar, their timing was different, their placement in the puzzle in an almost opposite kind of order. And yet, the final puzzle shows the same image, once all the pieces are in place - an image of pain becoming power, and of loss resolving into love. Thanks, sista!
by
Meryl Ann Butler (41 articles, 31 quicklinks, 3 diaries, 303 comments)
on Thursday, June 26, 2008 at 12:38:48 PM
Meryl Ann. And what I have found from talking with other "young" widows and widowers is that the premature loss of a partner throws you into such a different place, the feeling of being "other," and the life order of things becomes reversed, finding ourselves a little out of step and disconnected from our peers.
But as you say, regardless of how the loss plays out, in the end, we are in very similar places - the grief, the loss and ultimately, the healing, are much the same and if lucky, the strength from enduring perhaps our greatest life loss, is something rather unexpected and from which each moment brings clarity - and deeper meaning.
Thank you!
by
Jan Baumgartner (49 articles, 136 quicklinks, 10 diaries, 243 comments)
on Thursday, June 26, 2008 at 12:58:47 PM
I would agree. To know that the person you love most in life is dying and will suffer horrendously and unimaginably in the process felt much like being buried alive at times. There is no joy in knowing of that suffering, bearing witness to. There are moments that are miraculous, but the weight of the watching and impending death for so many days and months and years, does wear you down.
That said, and having suddenly lost other family members and friends, while the shock knocks the breath right out of you and in no means is easy, to know that someone you loved deeply didn't suffer is a strange comfort - and only in death can we find such bizarre "comfort."
People often say with sudden death that they didn't get the chance to say goodbye. Maybe the "chance" should come in expressing our feelings every day. I'm always surprised how rarely people tell one another what they mean to them, that they love them. We don't always get second chances, why gamble on it?
by
Jan Baumgartner (49 articles, 136 quicklinks, 10 diaries, 243 comments)
on Thursday, June 26, 2008 at 3:07:29 PM
Every day, he would thank me for everything I did for him. Even with so little strength to speak, he'd smile and whisper "thank you" - thank you for brushing his hair, thank you for pulling a blanket across his lap. I remember once after he thanked me for something yet again, I smiled and said, you don't have to thank me. And he smiled back and said, yes I do. It was the only thing he could do. And so I let him.
We didn't have a wheelchair van and the last year and a half of his life, he never left our house. I remember once, as he sat in his wheelchair gazing out the picture window across the cove and reach, I asked him if he missed being out in the world, the interaction, being part of it. And he said to me that he had everything he ever wanted and needed, right beneath his roof.
We both were fortunate. I will be forever thankful that I was able to walk him through his journey.
Thank you for giving me the opportunity to tell his story, and mine. He was extraordinary, and because of his love I walk in this world with an open heart and an even greater love of life.
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Jan Baumgartner (49 articles, 136 quicklinks, 10 diaries, 243 comments)
on Thursday, June 26, 2008 at 8:27:52 PM
...it felt cathartic. It said so much in so few words...laboring when the sheer tedium must have been mind-numbing, fleeting and bittersweet when the melancholy just starts to clear...only to have it close in, once again.
My first OBE happened almost 30 years ago...I had one other one after that. It was just too real for it be a hallucination. Spiritually quickening. Not sure if the fearlessness came first, or the OBE.
I think death is only frightening because we want to live. I think we want to live because of the awareness of whom we truly are because we are experiencing whom we are not. The limitless wouldn't be noticeable, let alone profound, without the limitedness of human experience juxtaposed in such sweet pain.
Dying is hard work, especially for the living. My heart just aches at the thought of being a witness. They are letting go of us, not just life. And we have no choice but to watch the long, slow goodbye. It would be easier if we could just hate each other, turn on a dime, and leave.
Leaning into the heartache every waking moment, every sleepless night...this is true love and the truest of many courages.
Do nothing, then rest...takes on a deeper and deeper meaning as the experience of the sublime sinks in over time.
by
Richard Volaar (20 articles, 0 quicklinks, 60 diaries, 227 comments)
on Thursday, June 26, 2008 at 8:34:49 PM
and thank you. There's so much we don't understand. But things do happen once the body is gone; that energy doesn't just disappear. It's both frightening and life affirming, and the greatest gift is in knowing that there is a continuation of "life" -- whatever that may be -- and I think, a universal energy, however woo-woo that sounds, that keeps going, endless. Thank you for your thoughts, Richard.
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Jan Baumgartner (49 articles, 136 quicklinks, 10 diaries, 243 comments)
on Thursday, June 26, 2008 at 9:47:23 PM
and grateful. It fills me with such hope when I know that people are not so afraid to read about these experiences. Some shy away, but it's my wish that those who read it find a common thread, or can say "wow, I feel that way too," or better understand the experience and can open their hearts to those who may be grieving.
The beautiful thing is life goes on.
As always Mikel, thank you.
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Jan Baumgartner (49 articles, 136 quicklinks, 10 diaries, 243 comments)
on Thursday, June 26, 2008 at 10:12:07 PM
Clearly John has not died a spiritual death with you. We will all get beyond the physical deaths of loved ones, but a spiritual death and loss of connection with a friend or loved one is the greatest of pain, because it, alone, is true LOSS.
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Georgianne Nienaber (145 articles, 46 quicklinks, 13 diaries, 338 comments)
on Friday, June 27, 2008 at 7:43:37 AM
our culture provides little to help us cope with death
Beautiful, deep piece; I am not only personally and emotionally touched by it but intellectually interested in it--I am a ''young'' widow, and recently I had to delete about 80% of my friends' phone numbers, because most of them passed on within the last 3 years . Several times a day, I have thoughts like: ''I would give anything to be able to have an ordinary chat on the phone with so and so,'' now dead. The longing never ends.
On the intellectual level, I think it's distressing how little our modern culture prepares us to cope with death, while it provides proper roadmaps for other major life transitions, like marrying or giving birth.
In traditional cultures, death is aknowledged, defined and accounted for culturally, people are provided with answers as what death is, where the soul goes, what to do so that the dead make the transition properly and the living can make sense of it and go on with their lives. Not so in our cultures, unless you are strictly religious, there are no clear answers or solutions, and you are left on your own trying to find ''do it yourself'' ways to cope.
The only thing our culture has to offer regarding death is a systematic, almost hysterical, refusal of it. The medical establishment makes us spend fortunes just to postpone the time of death by months, weeks, even days, often at the price of terrible suffering for the dying. We don't have the right yet to cut this suffering short by resorting to euthanasy; in this respect, the law in the US is still that the State/religion should have control over my body, not unlike the enforced motherhood imposed on women by the probition of contraception and abortion up to the 70s.
A dear friend, a devout Catholic, had a heart attack at 97. At that time, she was completely unable to walk and lived in a nursing home, but still could see, hear, think clearly and her memory was quite good. The doctors brought her back from the brink , but from then on, she went into a rapid decline, losing her vision, her hearing, her memory to sink in total senility/invalidity, finally passing at 102, a complete vegetable after living in disconfort and pain during these last 5 years. Before losing her head completely, and despite her religion, she would curse her doctors regularly for bringing her back, and so would I. What's the point of this absurd desire to postpone death until the very last second, torturing the patient in the process?
Glad you had some signs. I got interested in mediumship a long time ago, wrote a book about it with the help of several distinguished mediums, and in the process, and after many readings, came across so many pieces of evidence concerning the survival of consciousness after death that, despite the fact I was, and still am, an agnostic, I had to come to the conclusion that this hypothesis holds serious credibility.
Glad to see that this topic of death is coming out of the closet, and with such sensivity and talent. Thanks to OEN for it's editorial openess and daring.
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francine (0 articles, 0 quicklinks, 0 diaries, 299 comments)
on Friday, June 27, 2008 at 7:48:14 AM
thank you for your thoughts and comments. Bottom line is, our culture is crippled as far as dealing with death, gracefully, but to me, it harkens back to or is part of the overall picture of our disdain and aversion of aging. We are all about youth and postponing the inevitable. If we cannot look at ourselves and accept what a "real" person of a certain age should look like, how then can we accept death? We have a skewed vision of aging and life and make every attempt to believe in our immortality, instead of embracing what is real, the moment.
Having just returned from Mexico where I lived for nearly six months, it was so refreshingly beautiful to be a part of a culture that embraces death as much as life - a deeper understanding of how to live and the richness of each experience. Having seen it too in my travels in Africa, it makes me all the more aware of how our culture is so very backwards, emotionally, in this regard.
And finally, in my own experiences with John's illness and death - we both lost very dear friends after he became ill. Some just couldn't deal with it, couldn't talk about it, it was seen as "depressing" or "too negative" - and then there were those on the periphery who stepped forward, valiantly, and without fear of what so many perceive as uncomfortable. That process in itself was both heartbreaking and life affirming.
Thanks for your input. It is appreciated.
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Jan Baumgartner (49 articles, 136 quicklinks, 10 diaries, 243 comments)
on Friday, June 27, 2008 at 10:23:07 AM
Dear Jan,
It always remains my desire to give good comments on your writing, but your writing is so excellent that I am finding difficulty in selecting the words to be used in praise of your article. You have kind and noble soul. Here I just repeat the words that you are one among billions, specially created by God the Great.
A lot of thanks
by
Muhammad Khurshid (286 articles, 31 quicklinks, 178 diaries, 145 comments)
on Friday, June 27, 2008 at 10:36:33 AM
Indeed, in terms of friendship, times of duress sort out the wheat from the chaff. Some people cannot cope with sickness and death and disappear from your life , but the ones who come forward become your friends forever.
Keep posting these beautiful pieces--although they make my eyes well up, they are a joy to read.
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francine (0 articles, 0 quicklinks, 0 diaries, 299 comments)
on Sunday, June 29, 2008 at 6:43:47 AM
