HOURS

HOURS
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by Joy Krauthammer

Valentines Day 2003

Watching "The Hours" (book--Virginia Woolf's Mrs Dalloway), compelling film in theatre, starring Meryl Streep, emotionally so connected to her friend, poet (Ed Harris) stricken with AIDS, ravaged with illness, thrashing with rage, ridden with visibly scaly skin, I felt empathy and the similarity to my life. A kiss decades earlier for Streep, for me thirty-four years ago, out of love and now caring for after many years, fifteen in my story, a 56 year old man riddled with cancer, mostly not visible to the eye, suffering with more uncomfortable horrendous intense pain and complications that one can imagine.

A reflection of illness from rare metastasized esthesioneuroblastoma. Morphine and Methadone don't decrease pain. Marijuana a problem. Red itchy skin, numb legs, lack of propioception (not knowing where in space his legs and feet are so they get bruised when fumbling and falling), freezing cold hands and feet and blue toes (special clothes), ambulation problems from stroke and spinal cord compression due to tumors, sciatica nerve pinching compression, muscle spasm, no stability, wobbly with cane, sometimes walker, wheelchair, tripping, falling, crawling-back to bed. Lymphedema-drainage therapy, towers of pillows, legs swelling like an elephant, bi-lateral parathesias (burning, tingling, pins and needles), constant monstrous pain that only sleeping pills cover, (color coordinated) cushion needed to sit on, shlep about. Blood clots caught in implanted filter, blood loss, blood tubes, blood thinners, blood tests, low blood cell counts, blood transfusions, aborted surgery-"can't see through the blood". Maybe eighteen surgeries before that one. Waiting for the next.

Dehydration, constipation, hernia, bloating of belly, nausea. Loss ot taste, no sense of smell since brain surgery (comatose for months) in 1988 when part of frontal lobe was removed with tumor, new brain lining failed to hold, opened again, scar along length of nose from stitches, physical depressions in forehead from opening skull, mind retention less, memory loss, over-dosing, under-dosing, drug allergic reactions, weakened chipping nails. Bandages, creams, dripping fluids, pills, capsules, herbs, $100 oz. maitake mushrooms, cat's claw, shark's fin. Can not sleep on decadron, prednisone for inflammation, drug induced psychosis, wired, wild, out of control, "off the wall", dis-inhibition from drugs and brain surgery.

Embarrassing with words, rage, curses, name calling, inappropriate jokes, stories, communication, and talking out loud to self. With recognition, may later apologize. Dry mouth from radiation burned out salivary glands, swallowing difficulty, fever blisters in and out of mouth, waxy bubbling ears, hearing loss, eye floater from fall and hitting head, lacerations, mumbling, fumbling, unconscious (Breathing? Dead?), 911 middle of the nights, ambulances, revivals, stitches, infections everywhere dangerous, urinary, deadly catheter. Fast 3 am car rides over hill to LA ERs. No stopping for red lights. Hospitalized for months at a time. Six in a summer. Can't carry, lift, soups spill on floor, black 'n blue from IVs, infiltrated, non-flowing and needle shots, accupuncture too, body distortions from surgeries, sagging skin from radical neck dissection with long scars on both sides from ears to chest, multiple surgical scars on length of back, others unseen under hair, metal disk in neck to guide robotic rays, Harrington rod in scoliotic spine making tumor scan imaging difficult not allowing full vision.

Ear, sinus cavity and port-a-catheter regular cleansings, hair loss many times, bald cold head, body burning red from radiations how many times and just finished another round, and irregular shape burnt out beard. Sick from chemotherapy how many times? Refusing recommended next chemo dose. Hormones destroyed, hypo-pituitary. Scars, scares, nightmares. Missed diagnoses. X-rays misread, wrong areas radiated, destroying good organs, not timely read, nor timely delivered. CT Mylogram - body upside down dye lumbar puncture-"blockage". Treatment? Delayed - "No beds available." "Go home." "Surgeon out of town." The partner, too.

Hours on phone making appointments for consultations. Hours researching treatments. Hours on CA freeways visiting millions of doctors, healers, clinics, Western and Eastern. Hours waiting for test results. Hours in ERs waiting. Hours as inpatient at six hospitals this last summer. Hours at Physical Therapy and Occupational Therapy. Hours driving to drug stores. Hours paying bills. Hours being despondent, depressed, disoriented, disillusioned, delirious, confused, anxious, fevered, fainting, hyper, hopeful, faithful and patient, while being his own best doctor. Hours not being able to sleep. Hours and hours spent on hard tables (seven hours at a time) for MRI scanning with incessant hammering, banging noises, and out of town Radiotactic Cyber-Knife surgery. Hours and hours in constant pain, groans, moans, sighs, rarely cries. Hours and hours and no doctors' communication. Compassionate oncologist calls 10 pm.

Appetite? Enhancers and caloric fatteners.

The scene riveting for me as Streep in kitchen doubles over in the consciousness of her emotional pain, witnessing, devoted care giving, for how many years of her standing erect with a disabled loved one (LO). And once doubled over, Streep could recover quickly within minutes, stand again and go forward with plans to honor the poet. And even then, welcome his former lover, and estranged mother.

My mother-in-law on other coast has no clue. "Everything's fine, Ma." Strength, courage, faith, hope, fortitude, love. Haunted by medical memories and missed futures. In the middle of ten plus Hours surgeries, I breathe deeply, regain control over Post Traumatic Stress Disorder and recover with coping skills to be in the moment, relinguish memory and future fear, and from crumpled state, stand again to withstand more Hours.

Did he eat his food? Is he being nourished? Is she controlling or truly trying her best to encourage him to care for himself. No, he doesn't have to do what he does not want at any moment, even if he could "perform" at that moment and event. No tolerance for anything not for him. No singing allowed. My man, as with the poet, is also brilliant, as well as determined, struggling, suffering, persevering, courageous and filled with faith. He, too, was dedicated to his work, being honored as Number One for his life's work, and must have everything his way. "My Way" is only a song for me.

Choosing life over death all these years. Enough. Dayenu. "Won't jump off bridge because that's not Jewish, but maybe fall off?" Streep's poet falls out of the window in his craze for liberation-for whom? For whom has he stayed alive?

Just watching him at arm's length, threatening, nothing she can do any longer to control situation, to help, direct survival, out of her grip; finally.

Sustaining my own life of joy along with a bond of love. And the garden, the flowers, have been my sanctuary, as I was reminded seeing armloads in Streep's embrace as she prepared her way to celebrate her friend.

"The Hours'" characters' lives eerily appear to be superimposed upon each other, to reflect earlier eras, repeating lives of others, echoing from novel to movie. So, too, mine parallels this plot of relationship disconnect darkness. And caregiving. Connection.

(Wellfleet, as a place referred to in The Hours, brought back memories of land my parents owned in Cape Cod and sold thirty four years ago (superimposed on a kiss) to pay for Mom's, z'l, six month short lived cancer hospitalization (versus fifteen years now for my husband), when she was forty-nine. Loved were the Hours spent in Cape Cod.)

Healing prayers for my husband, Marcel, Menachem Elimelech ben Tova Mateal, are greatly appreciated as we find new spinal cord tumors just as radiation, once again, is finished. Appreciated are the Hours of love and Hours of care from countless medical staff, my family, friends, former medical colleagues, golf partners, spiritual community and rabbis. Marcel is a living legend.

Love,

Joy Krauthammer

Caregiver Angel Warrior

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Post Script
Marcel lived to go to his daughter's wonderful wedding,
 'The Comeback King' made it
and in his electric wheelchair, he danced!

Baruch Dayan HaEmet
Marcel, z’l, my husband of 31 years, died January 17, 2006, 17 Tevet, after last few years of paralysis and living in his bed 23/24 because of the lymphedema, and last three years and more surgeries of hours of the worst complex medical conditions.
G*d finally took home Marcel’s soul after six months of agonizing artificial "life-support" and eighteen years of cancer, since the first horrific brain double surgeries in June 1988.
Marcel's story was on http://www.thestatus.com/.

 At Marcel's funeral I called out, “He’s free, he’s free at last.”

FAITH ~ COURAGE ~ INDOMITABLE SPIRIT

I wrote on his gravestone.

Marcel never gave up.
He remained Number One in his challenge -- his being Survivor Warrior.

My story of Marcel's hours was written in 2003, before the last three worst suffering years of his life.

Or were they the 'worst' hours?  Marcel said, "I love you" and "Thank you".
~ ~ ~


Another story on Marcel
http://marcel-my-husband.blogspot.com/
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GRIEF REVIEW

GRIEF REVIEW   

by Joy Krauthammer   

Nov. 26, 2006  

(After reading Sh’ma 9/2003 issue)

I am still in place, stage (no drama here) of aveilut, from burial until the first anniversary of the death, in the pain and gradual healing marking this process. Almost two more months I have of being aveilut. For 18 hours I was in aninut, period between death and burial, halakhic mourning stage.

Wish I had known of R. Joseph Soloveitchik’s Essays on "Mourning, Suffering and the Human Condition'. Originally spoken in 1961 to Boston mental health professionals.

Aninut = "feelings of shock and anguish of bereavement allowed untrammeled expression."

According to Soloveitchik, Avilut is "necessary and profoundly heroic." Reaffirm purpose of life and dignity.

Does this mean I was heroic in getting past this stage, or in being in this stage? Or? Clearly necessary. in grief, I needed to be secluded from community except for Kaddish.

Soloveitchik writes that "emotional defeat is necessary to spiritual victory."

(Marcel’s, z’l, father, z'l, studied weekly with Soloveitchik.)

"In R. Soloveitchik's 1978 "Catharsis", he writes that "all sincere spiritual striving must end in movement of surrender before the unfathomability of that which we are trying to approach ."  In the early version, he asserts that this ability to accept limitation and defeat is utterly necessary to the psychological health of hubris-ridden modern men and women." (David Scharz)

I needed to surrender to G*d, to All that is, when I had to accept defeat in my trying to help somehow, to control situations, i.e. keeping Marcel in the Valley during his final six months during artificial life-support, and not to have health insurance send him to LA where there was an "acute" vacancy, but where we had no one and the freeways drive was long.  I had just had double knees surgery, and was really crippled and in pain.

Yes, it was unfathomable. I had to accept the decree. I broke down crying on Marcel in his ICU hospital bed. Did he know? He was conscious. I was like a widow over a dead man’s grave site as he was being buried. That was a final blow that I was feeling. I could no longer help myself, and show a different face to Marcel. Not an upbeat facade any longer; but a face filled with fear, fatigue, fight and sadness. Truth prevailed. I had to accept limitation and defeat!

I could not allow further NG tubes to be forced into his body causing trauma. Did I help relieve pain? Did Marcel let go any sooner? Poor Marcel. He struggled so long and so hard. Finally he could be released. I think he let go because I was not there. Even if I was, I may have been asleep and not even know. Would the nurses have known? I must feel OK with the fact that after singing Marcel a 'lullabye', I went home to sleep.

I did better this way, because I had to totally function in the morning; not knowing I had to inform mortuary, etc., make immediate funeral plans, write death/funeral announcement, and write and call everyone. And find Aviva who did not answer any phone calls in morning. Where was she this morning? And I could not call Granny in the LA hotel to tell her that Marcel had died! --until Aviva was with Granny. May he rest in peace, and in G*d’s glory.

Yes, there is a "measure of peace" (David Wolpe) to know that death is a stop along the journey to ‘Afterlife’ and not just a painful realization of finality."

For me --Marcel can now finally know truth. Maybe Marcel can look after me from where he is.

Maybe Marcel helped Jered today in his terrible car accident. I am glad that friends can channel Marcel and share with me, his journey. I pleaded with G*d to have mercy on Marcel. Marcel suffered enough!  Dayenu.

And my suffering? Slowly I will get over it, on my death, anyway, but it surely took a toll on me in every sense in every world, spirit, heart, mind, body. I suffered also because of Marcel’s negative treatment of me. (edited) This is emet.

Writes (Ilana Harlow) in Sh’ma, "Many traditional responses to death involve a creative impulse given expression through art, music, and rituals connected to funerary rites."

"Creativity counters the destructiveness of death. Creative acts not only give those encountering death a project to focus on, but also provide them with a way to physically enact their grief. To give shape to sorrow and to evoke the presence of the dead amongst the living."

The first place I went while grieving was to We Spark, place for people with cancer and their families. I knew it would be protective, and others there were in a possibly similar place and/or facing serious illness.

In workshop, I created the first of a few pages of a scrap book with photos. (Later I presented to  friends their now decorated photos.) I was able to be expressive while I felt bound up and not in the bonds of eternal life, but here. I was able to step out and be creative. I was proud of myself.

My writing has been also in this vein, no IV’s here, but then maybe it is, an infusion of life into myself, to heal cathartically through expression of words-- releasing what I am involved in at that particular time.

How sad that Marcel and I never discussed what onset of dying meant. Bought a plot where for his dying desire, he could have a stand up gravestone like his ancestors, and together we wrote out funeral plans. I insisted. Glad I did. (I was ready for mortuary, and they still made mistakes: No guest cards for names, no viewing curtain closed. We, family, waiting, were all visible exposed in grief to funeral guests. Mistakes on death certificates. Does it ever end?)

Decided on details, casket, words for monument/matzeivah, casket bearers, donations for charitable organizations, content to have, not have at service. No music for Marcel. Yes, in future for me. A party for me. Experiential of course. Creative, musical, artistic. feeling, doing.

I said/did Vidui / confession with Marcel. What did he get out of it? I have no idea. He was in bad shape (unconscious?) when I offered the confessions for him. "Connectedness of life and death." (Alison Jordan)

(Roberta Goodman) Yes, we have "ritual, symbols, customs, prayers, narratives, and laws addressing theological, psychological, sociological and relational questions about death and dying."

I have told stories about Marcel. Looked at pictures, lit a yahrzeit candle, lit yiskor candles, given tzedakah / donations and visited his grave site. All creating memories. I have done so much. Made lists, written stories, ordered plaques, Torah parsha memorials, monuments / matzeivah, given gifts to conference speakers in his name. I made a huge loose leaf book on Marcel. I hope that Aviva appreciates that, and also one I have been writing on me. Marcel would have never done this for me. Who would have thought that I would have done this for Marcel?

Amazing that I wrote huge medical care giving books for Marcel and his aides for his proper care. They are good books that I created. I do think I did everything possible. Even had mikveh / water ritual purification to try to distance myself from heavy mourning after half a year. Wish I did not have to be suing company (deleted) now for their breach of contract with contract. For the sake of truth and principle and for Marcel and myself, I must pursue this. This is costing me a fortune in pursuing justice. Tzedek, Tzedek, Tirdof. 

Zichrono l’vracha.  Saying it is hard for me to feel comfortable with the words.

(Avriel Bar-Levav) Jewish rituals for the sick and dying were written about in the 1600's by Leon Modena, Balm for the Soul and Cure for the Bone. Published 1619, Venice. Where was this book when I needed it? I had prayers plastered on the walls of the hospital rooms so that visitors and myself had easy access to share words, love, prayers, Torah with Marcel.

Ma’avar Yabbok, by Aaron Berechia Modena, published in Manuta in 1626. The passage of Yabbok, and then these books disappeared. Because people die in the process now in facilities, and medical personnel want to "save" the patient, and fight death, so don’t share rituals and "recite and converse in order to escort the soul of person when he is dying, and give his soul back to G*d who granted it."

I can understand this one. Death would be considered the failure of physicians and these docs did not want to fail themselves, or Marcel, most respected of doctors.

I think that in so many of the hospital stays Marcel had back to back, five-- all wanted to ‘save’ him, but the last one. This place a long hard drive away into the city was a blessing, a hidden blessing, which only after Marcel’s death was revealed to me. A doctor who finally understood that Marcel should not continue to suffer as he had, on life support (and further paralyzed and with massive worsening diagnoses) for the prior six months in five facilities. Northridge Hospital-- 2 months, Barlow-- 2 months, Valley acute, Encino ICU, and LA acute.

What a journey we all had saving Marcel. Could I have done anything differently? Does not matter now, although it continues to tear at me. Marcel heard my tears for himself. And still does.

Yes, I was behind a mechitzah / gender separator for a full month, daily, while reciting Kaddish.

I prayed out loud. Orthodox men may have prayed a little louder at the Young Israel, and I told them what a mitzvah I had them doing by having my live presence. I honored Marcel when I made a kiddush breakfast after my shloshim / 30 days ended.

I have done a lot to honor Marcel’s memory. And this was for an unkind (deleted) spouse.

My love must have been deep. And Marcel knows this, even more so maybe now with unhindered clear vision.

Yes, all the writing that I did for family and friends while Marcel was on life-support, in Thestatus.com was cathartic.  It gave the world info, ongoing status on Marcel. I asked for prayers for healing and for his visitors.

Now I still write cathartically. Feels like a bottomless pit, because I keep writing and could go on, but I have chores to do. So I will end now, for now.

There is a sadness in even stopping the writing. It helps. Watching movies, reading stories, both with sadness, death, dying-- evoke in me bodily pains, and tears. They retreat slowly. I slowly go forward.

 Bob Dylan sings of life being sad. He sings it well.

I can finally open enough without protective shells to listen to words of songs. Been years to finally be able to listen to anything else but Marcel’s needs.  May his memory be for a blessing.

How absurd can life be to get one past grief and mourning?

~ ~ ~

Serve G*d With Joy

"Ivdu Et Hashem B'Simcha"

© Joy Krauthammer