When my daughter was nine days shy of her 13th birthday, she succumbed to pediatric cancer. We had some inkling since birth that she could be a short timer. When her brain tumor harvested itself at age six, it clarified many questions, medically. After that, we lived each day with no promise of tomorrow. I think it is a good way to live, disengaging expectation, making every day count for the best if you can. We had a memorable wake for her in Point Arena, tragic as it was.
Ruby had her own business license at age nine when she owned her own flea market. She had been an active member of her community. With the heart of an artist, she had acted in all of the plays the children of Acorn School created, wrote and directed during her years attending. She had a mind like a steel trap for memorization when her lines were read to her. Her brain tumor made it impossible to read well the words on the page. The last year of her life had been the most agonizing to watch in her deterioration toward death, when all she wanted was to reach 13, be a good student and have friends. Reminiscing about her emotional, as well as physical suffering, still breaks my heart. Cancer affects every facet of your life. And your family's life. As a parent, you feel so helplessly out of control, as if any of us are “in control” anyway. One support group suggested that mourning over the death of a child does not reach transformation for the parent until the offspring has been dead for as many years as alive. It's been 15 years so far since her death. I'm here to say, death is not something one so easily “gets over”.
“You will lose someone you can't live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn't seal back up. And you come through. It's like having a broken leg that never heals perfectly – that still hurts when the weather gets cold, but you learn to dance with a limp.” — Anne Lamott
A couple of months before Ruby died, Shirley Zeni called me to ask me if I wanted to buy her parents' old home on Mill Street in Point Arena. Her husband, George Zeni, was also dying of cancer and she needed some ready cash to finance George's hospice. We commiserated, I gave Shirley a down payment, and purchased her parents' former home. It was a strong home, built with two layers of 1.5” old growth redwood juxtaposed atop one another and caged in stucco. It never cracked from earthquake in all the time it stood on the San Andreas Faultline, and had a 2.5 car garage in the basement and a 500 sq. ft. old growth redwood skid shed out back on Point Arena Creek. It also had some history of import in Point Arena, for deep in the bowels of the cavernous basement it held the first indoor marijuana grow room in Point Arena, established in 1974. ...Almost a historical monument!
A spacious home, my friend, Sharon Neverwhite, a painter who calls herself a “colorist”, had colored each room inside our new home while we were in the hospital. She had covered one kitchen wall with black chalkboard paint. While she was at it, she also improved with chalkboard paint the ugly avocado green refrigerator. She artistically drew on the upper left corner of the wall in chalk, “Ruby in the Sky With Diamonds”. That started the flow of chalkboard art that happened that day with each mourner who arrived to pay their respects and condolences to Ruby at her 3-day wake, held in our new home, which Shirley so kindly and graciously helped arrange through inviting us to live there before escrow closed — in time for Ruby to die comfortably.
At wake's end, the driver finally arrived in the late afternoon from Santa Rosa to take Ruby's body to the crematorium. He remarked to me what an unusually pleasant wake he had witnessed while there waiting for us to get her body ready to go. I thanked him, pressed a doobie into his palm before he exited, and smiled, “Ruby's used to pulling over in Jenner.”
After they had gone, I opened the refrigerator to refresh my drink, and noticed a new drawing on the refrigerator chalkboard. Ruby's old friend, Carolyn Cooke had written, “A lady always knows when to leave.” I walked to the back porch, collapsed on the step and bawled, disgusted (as in having been robbed) by my enormous loss. She was just the kid I had always wanted.
“It was a fine cry – loud and long – but it had no bottom and it had no top, just circles and circles of sorrow.” (Toni Morrison, SULA)
Guilt set in when I surprisingly felt relief that Ruby was finally at peace after such a lifelong struggle. I could feel the relief of feeling her out of pain for once, but even so I felt badly that it almost felt okay that she was gone. Even though she was a very high functioning individual, complete with a fine sense of humor, all her life she had a disability that would eventually kill her, but that no one could “see”. Congenital, it was with her in utero (at conception). The tumor of unknown etiology was an estrogen mimic – a xenohormone. I grew up exposed to countless buckets of pesticides and herbicides sprayed by my father and cousin on our 400 acre farm — buckets labeled “Monsanto”, “DDT” and “2-4-D”. Because of my exposure, her early death was genetically programmed into the twist of her DNA from the get-go, to kill with the onset of puberty. She was done before she even got started.
“I simply wondered about the dead because their days had ended and I did not know how I would get through mine.” James Baldwin, Giovanni's Room
As I read the information describing depression, I knew I had many of the symptoms and wondered often if I was genuinely suicidal, and if that would be a good result. Researching her condition her entire lifelong, and the realization that it was incurable, caused waves of considerable redundant depression, and for good reason. I did not take prescription mood enhancers, or antidepressants, only because I believed I was not chemically predisposed to depression. I had previously been happy most of my life when left to my own devices and not selecting bad choices in relationships. I had every reason to be bummed and my body, mind and spirit told me so. I'm sure I have a large degree of post traumatic stress as a result of thirteen years of living with Ruby's acute medical intervention and care, also. I knew there was acupuncture, which often helped activate my “reset” button, but chose to sit with my depression more often than not and to mourn Ruby's loss in all its depth without masking with pharmaceuticals, the pain I felt in the process of mourning. Nonetheless, I thought about suicide to finally end the break in my heart.
“Distinguishing between grief and clinical depression isn't always easy, as they share many symptoms; but there are ways to tell the difference. Remember that grief can be a roller coaster. It involves a wide variety of emotions and a mix of good and bad days. Even when you're in the middle of the grieving process, you will have moments of pleasure or happiness. With depression, on the other hand, the feelings of emptiness and despair are constant.” http://helpguide.org/articles/grief-loss/coping-with-grief-and-loss.htm
When “to be or not to be” is not really a question, suicide becomes an option to end the psychological pain which many depressives endure, living in the depths of constant torment and deep emotional darkness. Do some of us live because we are afraid to die or die because we are afraid to live? The mystery of suicide remains with those who don't experience severe depression and cannot grasp the reasons behind an act which is always devastating to survivors. There is a saying about suicide: “Those who fear suicide have never considered it.”
The town of Boonville was in a haze of loss after learning of the sudden death by her own hand of one of its teachers some months ago. It was a second suicide in three generations, each ending their all-consuming emotional pain caused by the depths of depression and all with a disability not apparent to the naked eye.
“When people are suicidal, their thinking is paralyzed, their options appear spare or nonexistent, their mood is despairing, and hopelessness permeates their entire mental domain. The future cannot be separated from the present, and the present is painful beyond solace. “This is my last experiment”, wrote a young chemist in his suicide note, “If there is any eternal torment worse than mine, I'll have to be shown.” — Kay Redfield Jamison, Night Falls Fast: Understanding Suicide
The local school where she had worked closed early due to shock. She had played a crucial roll in her community as a teacher's aid. With her passing came nothing but kind words from her friends and those she had affected in life, students, former co-workers at the school and the Boonville Hotel where she had worked as an innkeeper and hostess and friends in the community. She was a sophisticated woman, attractive, well-traveled and well-liked with much to offer Boonville. The months following her death have offered a reflection on a life well-lived.
“Chronic anxiety is a state more undesirable than any other, and we will try almost any maneuver to eliminate it. Modern man is living in anxious anticipation of destruction. Such anxiety can be easily eliminated by self-destruction. As a German saying puts it: 'Better an end with terror than a terror without end.'” Robert E. Neale, The Art of Dying
In death there are no kind consolations. No easing of the pain with words meant to butter the brain in sympathy. Death can consume those of us who are left behind to grieve with aching hearts.
What is the right thing to say when a beloved member of a community dies? Want to console survivors – but lack articulate words of comfort? Welcome to the essentially inexpressible emotion of grief.
Grief is not strictly an emotional process. Frequently there are accompanying physical symptoms which cause visceral effect, such as fatigue, nausea, lowered immunity, weight loss or gain, aches, pains and sleeplessness. Dr. Oliver Sacks wrote in his book, Hallucinations, of “bereavement hallucinations” suffered by 40-50% of the aggrieved. When emotions pass on to “mournful”, he says, they disappear. He's proven this by functional brain imaging used while chemically-induced patients hallucinated. In this way, various emotional centers in the brain were mapped. He says hallucination simulates perception. It's part of a natural process of how various people trying to cope with loss of love or life, interpret their world.
“Death leaves a heartache no one can heal, love leaves a memory no one can steal.” (Irish headstone)
Unfortunately, aggrieved family members should be prepared to hear words that are awkward and inappropriate, as most Americans have little understanding and rarely any education in the process of cultural rituals involving death and grieving. Questions will abound out of curiosity. Prepare a brief response and remember that you are not obliged to tell the entire story. If you can manage it as the aggrieved, simply say “thank you”. If you can muster it, be gracious to all expressing sympathy regardless of tactlessness, unfeeling remarks or just plain bad taste... Grief makes us awkwardly inflexible, emotionally.
“Give sorrow words; the grief that does not speak knits up the o-er wrought heart and bids it break.” — William Shakespeare, Macbeth
I can only say from my own personal experience, that which I've learned not to say to the grief stricken. The full spectrum of off-putting phrases from, “I know exactly how you feel”, to “I can't imagine...”, bring eventual feelings of disdain from the survivors even though mourners are clumsily trying to share their feelings, too. The mourner uttering the inappropriate words, “I can't imagine”, seems trying to remove him or herself from death as if untouchable, even though... “We all die of something, sometime”, as Ruby used to say.
All the same, “I can't imagine”, when spoken in grief, leaves me to retort, “Why would you want to imagine that? Please think about what you say in condolence because “I can't imagine” is just plain condescending and wrong to say to anyone in grief because it pushes the survivor into yet further remote isolation, because you have chosen the one-ups-manship of removing yourself from something no one escapes — death.”
By projecting ones worst fear (of death) onto the survivor(s), insisting on expressing an empathic inability to show appropriate compassion by installing even further distance with “I can't imagine,” it implies to the survivor that it cannot happen to you. It is the survivor, consoling the mourner at that point. And, it is the most common expression used, because it is how the majority feels about death. That's what hurts the most – the off-putting assumption that death sets those affected by it – apart and aside, in a very scarey fear-based way. Death is that uncomfortable an emotion to comprehend for those not directly confronted with it — thus, they cannot imagine it. Unfortunately, inflicted isolation is often the end result for the aggrieved. Fear-based people often avoid families who've recently suffered a death.
But what is appropriate to say to someone who's suffered a death of a loved one?
Start by asking a helpful question instead of nervously sounding like an authority by making a statement about your own feelings. Death can't be “fixed”, so don't try. Sit with death in silence. Be compassionate. Be still. If that's not for you then try to discretely make yourself useful, even if only behind the scenes. For instance ask, “Is there anything I can do for you?” Find a need and selflessly fill it. This can involve taking out the garbage and recycling, cleaning up the refrigerator or dishes in the sink even if you've never cleaned a dish in your life, filling the tank up with gas or bringing food to the home of the mourners, which was our familial custom in the Iowa of old. However, in some Jewish traditions, I am told never should flowers, instrumental music or food be gifted in times of death. Cultural and religious mores should be safely and respectfully observed.
As we are taught in this culture to say, “I'm fine”, even when we're “not so fine”, so do the survivors unthinkingly utter those words of acquiescence. Go ahead and take the initiative to kindly take out the trash, do the dishes, or gift some other useful purpose to make their days easier after a death in the family. Drive them to an appointment. Quite often family members cannot remember much of the details of funerals as they are often floating in the fog of grief. Such details dim in comparison to the importance of life and the pain of life lost.
“The fog is clearing; life is a matter of taste.” — Frank Wedekind, Spring's Awakening
And after the initial rush of activity immediately following familial death, don't forget to show up also in the weeks and months following to offer support to survivors. Don't be a stranger. Loneliness sets in after the death of a loved one. Go visit, make calls and check in, making it a ritual in the months following death. Don't isolate your grieving friends through inaction. Look to the future with focus and help them do that, too. Offer to take them out for lunch. Take a little road trip out; ...or a little “carry-out” in... make new and meaningful memories.
“A man devoid of hope and conscious of being so, has ceased to belong to the future.” — Albert Camus, The Myth of Sysyphus and Other Essays
Need is our past. Regret. Want is our future. Hope. Desire. Fulfillment. The creativity and completion of successfully avoiding past mistakes. After all, what is mental health, but learning from previous failures and not repeating those same mistakes? The Thai language is spoken in “Perfect Present Tense” — no past or future to it. Based in the Buddhist culture, the living no longer utter the name of the dead because it is believed that in order to let the dead go on to do their own best good in the next life, you have to set them free in spirit as well in their previous life, by not calling them back from their next life's journey. Dwelling on their past life keeps the spirit(s) of the dead hanging around out of the neediness of the living survivors who “miss” their beloved dead.
After the tsunami of 2004, I visited South Thailand, and had Thai friends at my door, grief counseling of sorts, because in their own Buddhist-based culture grief and especially uttering the names of the dead, were unspeakable. In that culture, you are not “dead”. Rather spirit has “finished” this life, before being reincarnated into the next. The South Thai Muslims even benignly refer to death as being “fini”, much like the end of a French film. While there, I was bitten by a “rock mover” fish when I was waist-deep squid fishing too close to the rocks with a hand-reel. The X-acto blade-like cuts in the knuckle of my big toe were excruciatingly sore with the poison the fish had pumped into my body. When I limped to the proprietors of the bungalow to ask if the poison was enough to kill me, they didn't understand what I was speaking about until I ultimately said, “Am I fini?” They told me, “Mai, Mai (no-no), but hurt like hell for long-long time!”.
Grief after a death in the family in American culture can overwhelm to such a degree that hope is lost and bills don't get paid, even though the money may be there as numbing depression sets in. One woman described her grief to me by pointing to an angel ring of redwoods, where two had stood together and one had fallen down, dead. She said, “See where the dead tree had stood there beside it? The big gap where their limbs intertwined? That's what it's like for me without my husband. I feel big gaps where he was...”
Metaphor is good when describing grief. When the words are painful to say. Ask if survivors need help getting back on track for a few weeks or months by offering any assistance in their daily routine. Patiently check on them. Don't be bossy or pushy. Baby steps at first. Be ready for anger – it's the second stage of grief, following denial. None of it is easy. As they go, so does their order: denial, anger, bargaining, depression, acceptance... not always in that order and with some repetition. But where is guilt in that order? When does joy return?
Elizabeth Kubler-Ross, who wrote the most ground-breaking work on death since Jessica Mitford wrote The American Way of Death, educates that “there is no typical response to loss. Our grieving is as individual as our lives. Some of the emotions felt at the time of death are: 1) shock and disbelief – a numbing – denying truth, 2) sadness and emptiness, 3) despair, yearning, 4) deep loneliness, 5) guilt of the undone and unsaid, 6) anger and resentment, 7) fear – loss triggering blame and fear – worries (regret) set(s) in about that which was not said or done “in life”.”
There is no timetable for grieving measured in years or months. Grieving is a highly individual expression of coping styles, faith, nature of the loss and – it takes time to heal. Sometimes I don't feel healed, though, as much as I feel “changed” by the experience of time. Another expression to avoid: no one ever “gets over” the loss of a loved one, and in particular, the loss of a child. Death is nothing that one “gets over” because death is eternity.
“They say time heals all wounds; but that presumes the source of the grief is infinite.” Cassandra Clare, Clockwork Prince
One day at breakfast, the owner of the restaurant where I was eating, could see I was having a difficult time trying to eat and take condolences about the recent death of my daughter. As I walked out of the restaurant to leave, the owner followed me out and shared with me the loss of his own son years earlier. I had no idea he had even had a son. He said, “I have to share with you something which was shared with me and helped me after the death of my son... You are not in control.”
I found those words not only unexpected, but profound. With that, I felt a big release of guilt, which oddly is not one of the stages of grief, but I think it should be the first stage of grief. There is something called “survivors guilt” which weighs particularly heavy on the human psyche. It affects those closest and left behind – the front line survivors – especially those associated with familial suicide or assisted death.
“No one ever told me that grief felt so like fear.” C. S. Lewis, A Grief Observed
If you recognize symptoms of complicated grief or clinical depression, be persistent as you can about finding a good mental health professional to speak with right away. You may have to interview a few until you find one who is actually helpful, such as it unfortunately is in the horribly underfunded and mismanaged mental health “industry” of today. Left untreated, however, complicated grief and depression can lead to significant emotional damage, life-threatening health problems, and even suicide. Don't be afraid to ask for an advocate to help you through the healthcare maze. Treatment and time can sometimes help release depression's grip. Contact a grief counselor or professional therapist if you: 1) Feel like life isn't worth living, 2) Wish you had died with your loved one, 3) Blame yourself for the loss or for failing to prevent it, 4) Feel numb and disconnected from others for more than a few weeks, 5) Are having difficulty trusting others since your loss or, 6) Are unable to perform your normal daily activities.
Suffering cannot be understood by those who do not share it. In the case of suicide, it is often a choice of exit for relief of the hopelessness of inescapable, unendurable, emotional pain.
I know after the death of my daughter, however, I felt all of these feelings for several years, and occasionally they still return when I see little kids wearing red eyeglasses, or with seasonal triggers such as birthdays, and her favorite major holidays — all of which included candy (Valentine's, May Day, Halloween, Easter...). I think she would be happy that I prefer to represent her in death with full memories, fun with laughter. Forever Ruby will be 13 in my memory.