Caregiver: Pancreatic Cancer
I am a Caregiver
My Emilee, my wife, was diagnosed May 2015 with stage 4 pancreatic cancer with mets to both lungs and right adrenal gland. She was a strong, stubborn, independent woman who withstood more bodily insults than I would ever be able to. She passed away January 31, 2017 (age 61). My blogs tell our story, and what I have been going through after her death.
I was thinking of gathering people's stories, and putting them together in a way that might be helpful to others who are diagnosed with pancreatic cancer. Poignant, gut wrenching, or funny stories (not very common with this disease), whatever you would like to share. Patient, caregiver, family, or friend, it does not matter.
If you think you would like to share and be a part of this, or you would just like to talk me, a caregiver who has lost a loved one and is now working at finding meaning in the time I have left to live my life, please correspond. Thank you, and I sincerely hope you and your loved one(s) are doing well.......Neal
My Emilee, my wife, was diagnosed May 2015 with stage 4 pancreatic cancer with mets to both lungs and right adrenal gland. She was a strong, stubborn, independent woman who withstood more bodily insults than I would ever be able to. She passed away January 31, 2017 (age 61).... [Read More]
Stage of Treatment
Receiving hospice or palliative care
IHC Blog Posts (3)
My Christmas Story, A Poem, Three Songs, and a Partridge in a Pear TreeDecember 28th, 2018
Why Christmas Eve Service?
By Neal Klein | December 25, 2018
What happened last year, was repeated again this year at the Stony Creek Congregational Church in picturesque Stony Creek, Branford, without any preconceived expectations that it would. From the setting and the sermon of the Reverend James, to the singing of the carols and hymns in the beautiful and cozy church, I was moved with the all too familiar waves of feeling that I have become accustomed to over the last twenty-three months since my wife died of pancreatic cancer.
Of all the things I truly enjoyed and found significant in some meaningful way, it was the service I attended with my mother-in-law last year and last night, that touched a place in me that was the food I was hungry for. It was exactly the sounds, the words, the air that I yearned to breathe and wanted to feel infusing into my blood.
Maybe it is the strong connection that Emilee had to the church itself. The building is lovely, and I can feel the history when I am there, and I feel the life of the stained-glass windows and the wood and stone of its construction. Maybe it is because it is a spiritual gathering. Reverend James’ talk always seems to be speaking straight to me and my heart.
He spoke of the meaning of this holiday, and the meaning of the birth of Jesus Christ, the One who offered hope in a rather bleak and chaotic political atmosphere at that time in history. Things were not good back then. People were under Roman rule, people were being used as slaves, there were many warring factions. The lives of the native inhabitants of the region were not valued much by the rulers. It was not peaceful.
This year he talked about how some people view going to church as an interruption of the holiday. Especially children, and even his own recollections of childhood conjured thoughts of how going to Church felt like an intrusion on the fun of the holiday. Some, children and adults, still feel that it almost gets in the way. Almost like the birth of the baby Jesus was an interruption in the order of things. An inconvenience, a disruption. And a beacon of hope.
Interesting, since at least for now, and especially interesting since I am a Jew, going to the service is the only part of this holiday that…. That what? That opens my heart to all that I am feeling? That connects me to Emilee? That connects me to Spirit that I feel inside me all the time, but is particularly strong at this season? This season, which was a strong favorite of holidays and times of the year in Em’s book of favorites?
I love to sing. So, add the setting, Reverend James’ words that hit home and are very here and now and present for me, the tradition of the setting, and the singing of the carols and hymns, and I am primed to feel. I feel a mixture from pure joy when singing my heart with other voices, to such deep sorrow, along with both memories of the past, feelings of loss, and the exquisite gratefulness of the sweet breath of the present, that I am at times just overwhelmed and my eyes runneth over. When Reverend James said this is a time and a place to feel deeply, feel the ache and the sorrow and, also to feel the joy, the jubilance and the liveliness of spirit, I knew I was exactly where I was supposed to be. I felt similarly last year.
When I shook his hand after the service and mentioned how much I enjoyed his words, I could not help the involuntary gush, as I said, “Obviously I have the part of ‘feel free to allow the tears’ down pat quite well”, which helped bring back a smile to my face. His face expressed a look that was one of knowing and compassion.
I intend to continue this tradition of the Christmas Eve service, next year, Spirit willing. It continues to be the high point for me, in a rather difficult time of year. And somehow, with all the lows and highs of emotion, I feel more at peace when I leave the service, than when I walked in. To me, that is the magic of Christmas.
May that feeling of hope and light transfuse into the hearts of many. May the world and especially my country as part of this world, find its way back to the light in a very difficult time. May Spirit gives us strength to make it so.
I wish you sweet moments with those you love.
And just for a little levity
I Ate Too Much by Neal Klein
inside my brain
there is a signal supposed to sound
when I tell myself to refrain
from eating like a ravenous hound,
but for some unknown reason
during this delicious display of foods I like,
especially made at this holiday season,
I loosen my control and my pants, as my stomach expands and my sugar spikes,
listen, this is not a complaint but sometimes I seethe
that I have eaten so much I can hardly breathe,
and then I take a walk with the neighbor's dog
so I can come back and eat again just like a hog,
my grandma used to encourage a second sitting,
re-tailor my pants with an ever-expanding elastic fitting,
well now I am older, my grandma has long since crossed over,
at holidays and special occasions I sometimes still eat like Rover,
and I like to wear sweats when having a special meal,
so I can eat, like a fish-gobbling seal,
and my waistband stretches like rubber,
to accommodate my whale-like blubber,
I try to be mindful and maintain my cool,
But sometimes I still eat like an unconscious fool.
Two songs, okay, three, since you insisted ..... A Hank Williams song, "I'm So Lonesome I Could Cry" https://youtu.be/MhnGbsi8flM
Randy Newman, from Toy Story, You've Got a Friend in Me https://youtu.be/qX6Kd1R3w_0
Neil Young Harvest Moon https://youtu.be/9CjFGT3khgk
Hope you enjoy as much as I do when I learn them and get them somewhat playable, lol, I strive for playable, certainly not perfect. If you get a smile or a tear out of it, then I have given you a gift and in so doing, I honor the love inside that is my mission to share. Hugs. I would at this point put a Snoopy icon with a big heart right alongside, or Pooh, or Dr. Seuss, or Mr. Rogers. You get the picture.
Understanding Grief, Or NotMarch 9th, 2018
This is a handout from a grief support group. I will share it and then add some words of my own at the end. I like to reference, and will provide what is provided in the handout. It is called Understanding Grief, by Jane Brody, January 15, 2018, but I do not know where the article comes from. Throughout the article, I have made brief comments, in parentheses, and they are notated by “My note.”
And one more thing. Normally I would edit this down. My comments at the end just do not seem to flow the way I would like them to, and one day I may fix it, or maybe not. I was going to, but then I found out that a neighbor was recently diagnosed with the same cancer my wife had, and I am truly shaken, and so I am excusing myself from the task of further editing on this, having a glass of wine, and getting this posted (I said posted, not plastered, right?...yes, posted.)
Although many of us are able to speak frankly about death, we still have a lot to learn about dealing wisely with its aftermath, grief, the natural reaction to loss of a loved one.
Relatively few of us know what to say or do that can be truly helpful to a relative, friend or acquaintance who is grieving. In fact, relatively few who have suffered a painful loss know how to be most helpful to themselves.
Two new books by psychotherapists who have worked extensively in the field of loss and grief are replete with stories and guidance that can help both those in mourning and the people they encounter avoid many of the common pitfalls and misunderstandings associated with grief. Both books attempt to correct false assumptions about how and how long grief might be experienced.
One book, “It’s OK That You’re Not OK,” by Megan Devine of Portland, Oregon, has the telling subtitle “Meeting Grief and Loss In A Culture That Doesn’t Understand.” It grew out of the tragic loss of her beloved partner who drowned at age 39 while the couple was on vacation. The other book, especially illuminating in its coverage of how people cope with different kinds of losses, is “Grief Works: Stories of Life, Death and Surviving,” by Julia Samuel, who works with bereaved families both in private practice and at England’s National Health Service, at St. Mary’s Hospital, Paddington.
The books share a most telling message. As Ms. Samuel put it, “There is no right or wrong in grief; we need to accept whatever form it takes, both in ourselves and in others.” Recognizing loss as a universal experience, Ms. Devine hopes that “if we can start to understand the true nature of grief, we can have a more helpful, loving, supportive culture.”
Both authors emphasize that grief is not a problem to be solved or resolved. Rather, it’s a process to be tended and lived through in whatever form and however long it may take.
“The process cannot be hurried by friends and family,” however well meaning their desire to relieve the griever’s anguish, Ms. Samuel wrote. “Recovery and adjustment can take much longer than most people realize. We need to accept whatever form it takes, both in ourselves and in others.”
We can all benefit from learning how to respond to grief in ways that don’t prolong, intensify or dismiss the pain. Likewise, those trying to help need to know that grief cannot be fit into a preordained time frame or form of expression. Too often people who experience a loss are disparaged because their mourning persists longer than others think reasonable or because they remain self-contained and seem not to mourn at all. (My note: this can be a child, a teen, or an adult)
I imagine, for example, that some adults thought my stoical response to my mother’s premature death when I was sixteen was “unnatural.” In truth, after tending to her for a year as she suffered through an unstoppable cancer, her death was a relief. It took a year for me to shed my armor and openly mourn the incalculable loss. But sixty years later, I still treasure her most important legacy: To live each day as if it could be my last but with an eye on the future in case it’s not. (My note: I like that concept very much. That was the original meaning of “carpe diem”, live fully but plan for tomorrow, not the popularized, “seize the day” as we have come to use the term.)
Likewise, I was relieved when my husband’s suffering ended six weeks after diagnosis of an incurable cancer. Though I missed him terribly, I seemed to go on with my life as if little had changed. Few outside of the immediate family knew that I was honoring his dying wish that I continue to live fully for my own sake and that of our children and grandchildren.
Just as we all love others in our own unique ways, so do we mourn their loss in ways that cannot be fit into a single mold or even a dozen different molds. Last month, James G. Robinson, director of global analytics for The New York Times, described a thirty-seven-day, 6,150-mile therapeutic road trip he took with his family following the death of his five year old son, collecting commemorative objects along the way and giving each member of the family a chance to express anger and sadness about the untimely loss.
Ms. Devine maintains that most grief support offered by professionals and others takes the wrong approach by encouraging mourners to move through the pain. While family and friends naturally want you to feel better, “pain that is not allowed to be spoken or expressed turns in on itself, and creates more problems,” she wrote. “Unacknowledged and unheard pain doesn’t go away. The way to survive grief is by allowing pain to exist, not in trying to cover it up or rush through it.”
As a bereaved mother told Ms. Samuel, “You never ‘get OVER it, you get on WITH it,’ and you never ‘move ON,’ but you ‘move FORWARD.’” (My note: And, in my words, I would add, I carry it WITH me, always and forever, so I move forward, but with it in my heart, it moves forward with me as I move forward, for as long as I live, and longer, I like to think.)
Ms. Devine agrees that being “encourage to ‘get over it’ is one of the biggest causes of suffering inside grief.” Rather than trying to “cure” pain, the goal should be to minimize suffering, which she said “comes when we feel dismissed or unsupported in our pain, with being told there is something wrong with what you feel.” (My note: Or, I tell MYSELF I should feel differently.)
She explains that pain cannot be “fixed,” that companionship, not correction, is the best way to deal with grief. She encourages those who want to be helpful to “bear witness,” to offer friendship without probing questions or unsolicited advice, help if it is needed and wanted, and a listening ear not matter how often mourners wish to tell their story.
To those who grieve, she suggests finding a nondestructive way to express it. “If you can’t tell your story to another human, find another way: Jounal, paint, make your grief into a graphic move with a very dark story line. Or go out to the woods and tell the trees. It is an immense relief to be able to tell your story without someone trying to fix it.”
(My note: There may come a time when others get tired of hearing “it,” and when I sense that in someone else, or maybe I am tired realizing I keep telling it, I don’t feel good inside. I may have a difficult time holding back from talking about “it”. Or I may have a difficult time because I want to keep talking about “it”. I may need to talk to the trees at that point, day or night, or to an animal ((cats and dogs are really good listeners)), or a stuffed toy animal ((I have a whole bunch, but a few are favorites)) or to God, the sky, the ocean, river, lake or pond, birds, sun, moon, something if not a someone.)
She also suggests keeping a journal that records situations that either intensify or relieve suffering. (My note: Two of my helpers, music ((listening and playing)), and writing down my thoughts and feelings, writing poems, writing songs, moving to music…that may be three, if anyone is counting.)
“Are there times you feel more stable, more grounded, more able to breathe inside your loss? Does anything – a person, a place, an activity – add to your energy bank account? Conversely, are there activities or environments that absolutely make things worse?”
Whenever possible, to decrease suffering choose to engage in things that help and avoid those that don’t. (My note: This last sentence seems so obvious and almost comical to read, but when in the forest, sometimes I can’t see the trees, and when I am suffering, I may not be thinking very clearly, and is that ever an understatement.)
First, there is a book that I liked very much, called “Good Grief” with the subtitle “Healing Through the Shadow of Loss,” by Deborah Morris Coryell. First published in 1997, a summary states, “We grieve for that which we have loved, and the transient nature of life makes love and loss intimate companions. In Good Grief, professional grief educator Deborah Morris Coryell describes grief as the experience of not having anywhere to place our love, of losing a connection, an outlet for our emotion. To heal our grief, we have to learn how to continue to love in the face of loss.”
The author is a visiting faculty member for Dr. Andrew Weil’s program in Integrative Medicine and is cofounder and executive director of the Shiva Foundation, a nonprofit organization dedicated to the education and support of those dealing with loss and death, located in San Luis Obispo, California.
To return to the last sentence of the above article, to be kind and compassionate to myself, whenever possible, and to minimize my suffering, I do my best to engage in things that help, and, avoid those that don’t. This takes time, and experience, and may also change over time.
Adjusting to what works and what doesn’t work takes a “fly by the seat of my pants” approach. I learn over time, and sometimes I learn in the moment as things are happening. This is new for me, as are so many things when flying SOLO after being with a partner.
Giving myself permission to learn as I go is part of being kind with myself. So is seeing myself give myself a hug when I need one. I not only see it, I feel it.
I may cry as I’m doing this, but that’s okay. Maybe, instead of the title of one of the books “It’s okay that I’m not okay,” I like to say, “I am okay just as I am in this moment” which will be different from all the other moments. Also, this doesn’t put a “not okay” label on myself.
Okay or not okay by whose standards? The general population? The non-grieving people? I think we all have grief and loss inside us. From the moment of birth, I feel a sense of loss of the safety of the womb. So, I am “okay,” even if someone else may not see it that way. And, my “okayness” in this moment, feeling what I am feeling, is just as okay as what I feel in all the other moments.
And, I will continue to hug myself, a new behavior for me, for as long as I need to. Even if I do find another to help with hugs, I like knowing I am able to do that for myself when I want to, without being dependent. I like hugs. There isn’t always someone else around who wants to oblige, however.
And, as I continue to be loving toward myself in this way, I expand myself to be able to do this for another. I think this is how I know I am growing in my grief and loss. When I am able to give, not only to myself, but to someone else. I will get there. Baby steps. It is in this line of thinking that Coryell gives inspiring examples of how embracing our losses allows us to awaken our most profound connections to other people.
But, none of this is easy, and it unfolds differently for each of us. And, immediately after MY loss, the noise of my pain is too loud to hear much else. Eventually, I can start to hear other sounds, which is both joyful and painful at the same time, requiring me to let go of what I am so desperately clinging to, in order to let something else in. I feel like I am letting go of a rock I have been clinging to in the middle of a swift current of an ocean that has been buffeting me around.
I must take a leap of faith that letting go of my rock of suffering and hurt will lead me to a life preserver I cannot yet see or reach without swimming to it. I am taking a free fall into the unknown with that creepy feeling of knowing the water is deep underneath me, vast all around me, and for a moment forgetting I know how to float, swim, and tread water. It is one of the most terrifying transitions.
I have only myself. And although I feel like I am letting go, I do not feel the exhilaration of life yet. It flashed on the movie screen for a split second, but not long enough to know if I really saw something or what that something was, and, before it becomes intriguing it is disturbing, until it stays on the screen longer.
Even after feeling the love inside me, I still experience this terror from time to time. Like I said, baby steps. Again, and again.
Understanding grief. Lots of books, some are helpful, some are not so helpful. It is a lifelong process. I don’t know if I ever really understand it the way I understand one plus one equals two. I feel it. At times I feel it stronger than at other times. I always know it is there, sometimes it just speaks louder. It knows it is welcome to speak when it needs to.
Maybe that is what is most important to me. I can allow grief to be a part of me, as I start to want to be alive again. It has become a part of me, as I continue on. I am different because of grief, and I cannot go back. And joyful and sad continue to learn to sing together, sometimes, with dissonance, and sometimes, in perfect harmony.
Poem - Two In TimeFebruary 14th, 2018
I started this poem a long time ago, When you and I were TWO,
If I said I knew exactly what is was about, I would not be true.
I just know when I wrote it,
I was contemplating life and you.
I know it is about feelings,
and letting life unfold,
and yes I miss you dearly,
and wish you were here for me to hold.
I finished it, and played words round and round,
till I finally think I am pleased, with the rhythmic sound.
A poem that needed rehab...from years ago I found,
One of my babies, I caressed and comforted,
its loose ends I soothed and filed,
and weathered its edges from rough to round.
TWO IN TIME
Searching for an obscure feeling,
The buoy lifted that falls tossed by the sea,
Like a wheel within a wheel,
individuals spinning free.
They might juxtapose
as easily as coincide,
Or mesmerizingly enjoy the ride.
Some time I take to pause,
Just to sense the breathless awe,
Some time I take to be free,
And feel Joy’s joyful sweet amour.
The embers of conscious life caressed,
Bellows fan to a rich warm flame,
With each new breath I softly breathe,
No two moments are quite the same.
After Sixteen Years I Finally Take The WalkFebruary 12th, 2018
It is just shy of oppressively warm this July day, and the brief downpour earlier has cooled it just a bit, and there is that smell of evaporating water in the air, as it steams up from the warm ground and surrounds me.
It has been sixteen years since that day, and since we got married. I have not visited the site yet. I have not felt ready. Not that I am ready now, but I am changed inside after she died six months ago and here I am.
I love asking people for directions in Manhattan. I don’t know why, but I just love the impromptu connection with another human being, a total stranger, who is kind enough to share the information they have and help me get where I need to go. Always makes me feel warm , and, connected with the vast web that is around me.
Directions, I am doing well. Eight blocks more west and then turn south. And, then about six blocks going south and I will see it in front of me. Hard to miss it as one nice young man stated. I check with a couple more people as I go otherwise I get smaller inside this mass of moving people, and I don’t want to get lost that way.
I am out of shape, and I am realizing how my heart is talking to me inside my chest, saying this is more than I am used to doing. I am getting really warm.
My heart says, “You are walking a New York pace which is a little quick and you better keep me hydrated or else I am going to start playing some of those syncopated rhythms you like to listen to”.
I take out my water bottle and drink.
“I will keep you hydrated,” I say softly to myself but realize I said it quietly out loud, and chuckle out loud as well.
Manhattan…, I am just another “out there” character and I am loving just being me. I AM a part of it. I was born in Brooklyn I say to myself with another quiet smile. My dad and my brother worked here. My Aunt worked here. My cousin worked in the U.N. building. I have tentacles here. People I know, and people my brother knew, were lost here.
As I get closer, I start thinking of the sheer numbers. The mass of people that I am going to pay my respects to, and I have tears streaming down my face. God, I didn’t even get there yet and I am a mess, but it is okay. Throngs around me and no one notices, I am just another body in the crowd with everyone walking their determined NEW YORK WALK and no one studying my face.
I have plenty of tissues with me. There is an instantaneous unimpeded channel from deep down, and out through my eyes for the flow and they less frequently get trapped in my gut or my throat since she died.
The wave passes through me, and I just tap the tissue supply in my pocket to make sure it is still there and let the tears fall and just wipe with my hand. Save the tissues for when my nose starts dripping.
I love walking. The breathing, inhale for two steps and exhale for two steps, the repetition, like a meditation and sometimes it keeps me from thinking too much. I notice I am walking uphill now, as if I were earning my way to get HERE.
I feel the blister on my left heel. I am approaching the new buildings. There is a long bench, and I sit down and dress my blister with ointment and a band-aid. Much better.
I look at the new buildings, take in the architecture and the reflections of the surroundings and the sky in the surface of the building. It makes me pause at the top of my breath till my brain says…”breathe”.
I talk to someone sitting near me, he is from Oregon, and we briefly talk about assisted death. Light talk. And, then I approach the north tower site first.
I want silence, I want solemn in the crowd, I want respect for the dead, but I find a mixture. Children running around, behaving and misbehaving, some parents attentive and some taking an oblivion break.
I see some with tears, and to one middle aged woman I offer some tissues in a silent but deeply felt understanding gesture and she accepts without words other than a subtle shake of her head, and my eyes well up.
I decide I can have my solemnity within and can cast my own mood around myself no matter what any one else was doing. I suddenly want to touch every single panel of metal etched with names. Each name is carved and cut through the panels so that the lights underneath shine through, which is becoming more dramatic as dusk closes in.
I bath my hand in the water running under the panels, and anoint each panel of names as I walk around, avoiding and honoring all the flowers and notes that had been placed in the etched names. Dip and touch, dip and touch, again and again, all around the north tower memorial, and all around the south tower memorial, each about an acre in its footprint. The water is cool and feels liquid and alive, and…holy…and…sacred.
I look at the deep hole in front of me, and the water cascading down the sides and then down the sloped flat section and then down again into the square hole, down, down, down, as if I am being pulled down from where I am standing, to the center of the hole, where so many had fallen and perished in the rubble, in the ruins, in a deep hole never to emerge.
But, their spirit did emerge. It is in the buildings around me, it is in the hearts of those who are here now and those who will come, it is in the names carved in metal so we remember and never forget. Ever. It's in the swamp white oaks (about 400 of them) gathered around this site, and the Callery pear (Pyrus calleryana) known as the survivor tree, which though badly damaged, was still alive after the attacks.
I touch all the names not just for myself, but for all those not able to come here because they are too ill, too far away, too full of cancer, too old and infirm, too young to understand, and for those who have died and could not make it here, for Emilee, especially for Emilee, because we had a special shared experience that day. A day like no other. She is here with me.
When I am done and just standing there, I notice this young woman with the most unusually large and incredibly blue eyes I think I had ever seen, and being in the unfiltered mode I say, “Wow, I absolutely love your eyes”, and she thanks me and we start talking.
She tells me she is from Norway, is here with her sister and her mom, and truly enjoying their stay. We talk about feeling pulled into the sculpture, and share how we feel standing where we are, and share a moment that is somehow significant, and she wishes me well and leaves to find her family.
I suddenly feel an ache deep inside, among all these people. One moment I feel a thread connecting me to each and every one, and another I feel this terrible ache in my center-most core, pulled down with the water into an abyss of darkness. I finally need my tissues.
When I Was Twelve...February 12th, 2018
I was twelve. It was May 12, 1966, a Thursday. We had moved into this house eight months ago on my twelfth birthday.
I walked the three-quarters of a mile to the LIRR station to meet my dad at around 6 p.m. so I could have some time with him as we walked back home together.
When I saw him, I lit up, and could not keep myself from running at him, throwing my arms around him and giving him a good, strong hug. I always lit up when I saw him. He let me carry his briefcase which had his initials on the light brown leather.
After we came home, he took a few minutes to clean up and we had dinner, my dad, mom, and I. My brother, five years older, was at college, about an hour away. After dinner I helped clean up and we watched Jeopardy. I remember my dad had brought home a new Louis Prima album that was laying on the old barely functional HiFi.
We went upstairs to move some furniture. There was a new desk that had to be moved from the extra bedroom into my bedroom. He and I moved it and we had a couple of other things to move around and rearrange. I used my new desk to finish my homework, while he went downstairs to watch T.V. and dance a couple of dances with my mom to the Louis Prima album.
I joined them downstairs for desert and I watched "All In The Family" and then I went up to bed.
During the week, each day my dad’s wind up BenRus alarm clock went off around five a.m. He would usually hit it quickly so as not to wake my mom too much, shave and shower and get dressed, except for his tie, which he would put on after eating. He would go downstairs for breakfast. Mom usually didn’t get up until a little later. I would get up and have breakfast with him, still in my pajamas.
Just toast and jam, and juice, and he had toast and jam and coffee. He held the toast with two fingers, and rarely got jam on his hand. His hands were bigger than mine, but I tried to hold my toast like he did. When we were done eating, I kissed him goodbye and hugged him, and I went back to bed until I had to get up for school, and he put his tie on and left for work. If the weather was nice or it was just a light drizzle, he would walk, otherwise my mom got up and dropped him off.
This morning when his alarm went off at five, he did not shut it off right away, and it kept ringing until it ran down. He did not shut it. From my room, across the upstairs hall, I heard her say, “Harvey, get up.” I could hear her and in my mind I could see her touching his shoulder like she did when on some mornings he was really tired and slow to get up, which was not often.
“Harvey, get up…Harvey…Harvey? …HARVEY”, each time a little louder and a little more frantic. I sensed something very wrong and got up out of bed and stood in my doorway looking into their bedroom through their open door. Their bed was on the far wall, and I could clearly see from where I stood. From where I was he was on the right, but lying in the bed, he was on the left side. I had a clear line of sight.
He was not moving. He was lying there, but someone had taken him out of his body. I just knew it.
I moved a little closer. My mom grabbed the phone, which was on his side of the bed, and somehow managed to call the volunteer fire department, our emergency number on the sticker on the phone. I don’t know how she managed to keep it together to tell them our address, because I was not even sure I knew my name at that moment. I felt like I could not move from where I was, and I couldn’t speak. My mom hung up the phone, half hysterical and half sobbing.
I didn’t know what to do. In addition to my legs which didn’t seem to know what to do any longer, my stomach had a sick and growing tightness and I had a feeling of goosebumps starting at the top of my head and continuing down my spine to my legs which still couldn’t make up their mind whether they were advancing forward or retreating backwards.
They wanted to run to her and help her and run to him to shake him, to hug him, to kiss him, but they also wanted to run and get the heck out of there because something came into our house during the night and hurt him, hurt him bad, maybe killed him. I didn’t know yet.
Someone or something was in the house during the night, I could feel it, and it took his soul out of his body, and I wasn’t sure it had left the house yet, and I didn’t know if it wanted to take me too. I wanted to run to my dad for protection, and I wanted to get the hell out of there because maybe I was next. I was frozen.
My mom was half hysterical, putting some clothes on, pale as all hell, and half sobbing , half wimpering and muttering.
I think I managed to get my legs to peddle backwards and she might have said get dressed or I just heard it in my head, I don't think she was thinking that clearly. I threw on some clothes, and then ran down to let in the ambulance crew or firemen whoever got there first, and showed them the way up to the bedroom. They started working on him, and I went downstairs to wait.
It was about a half an hour before they took him out and I don’t remember if they pronounced him dead then or after taking him out to the hospital or if they even bothered with the hospital and just took him to the medical examiner’s. I just knew whoever came during the night and took him was probably gone by now but I still was not one hundred per cent convinced.
I WAS convinced, and certain beyond doubt, they did not let him say goodbye and I was extremely mad about that.
I did not get to have breakfast with him. I didn’t get to kiss and hug him goodbye. And I still was not convinced that “IT” was completely gone out of the house yet.
But, I knew “IT” had come into my world and changed everything. I was alone.
My world was turned upside down. One morning breakfast with my dad, then the next morning taken away by "IT". I should have stopped that gurney in the house, I should have gone into the bedroom before they took him out, pushed them out of the way, and hugged him and kissed him goodbye and told him I never loved anyone or anything as much as I did him. I hadn't realized that or ever really thought about that.
And, I did not know that was the end, the final scene in the play, the finale, I did not understand the whole play and if I did I would have clung to him and had a hard time letting go, and they would have had to pull me off of him and they might have needed more than one of them. I was afraid of "IT" and "IT" robbed me, and robbed my family. But I did not know then what I know now. I was twelve. How was I supposed to know?
I could leave this story in my journal file very easily, and not share it. And, some might say it is too personal. I say it IS personal and maybe someone reading it can relate, and in so doing, maybe complete something in themselves that would be beneficial to complete or add something to, it is hard to say what another will do with my story.
Maybe it will help so someone makes sure they DO say goodbye before it is too late, or they DO tell someone how MUCH they love them and how thankful they are that they have been blessed to have them in their life for the time that they did.
Maybe it will help dealing with a child who has to deal with death. Deal with the unnamed fear. Two years before this my cousin died from Hodgkin's Disease (Lymphoma), she was 12. FEAR. And, I witnessed a neighbor in my apartment building having a heart attack in the hallway outside her apartment, which I saw through my apartment peep hole when I heard the noises but was too scared to open the door. FEAR.
Yet, it is a universal story of how a child deals with and feels about death at an early age. Enough.
What you may or may not have picked up from the story is that I walked home with my father on a Thursday the twelfth of May. He died the next morning. And, that was...Friday the thirteenth. Just added a little spook to my already being spooked. You can imagine how in the first few years afterwards, I was a more than a little edgy on any Friday the thirteenth. Okay, I still am, a little, but I try to shhhhhhhhhush it.
I could not have written this without having gone through what I have since Emilee died. The intensity of the grieving for her has opened up places in me that were not there before and somehow allowed me to see things, remember things, feel things, to a depth that I could not before.
It is as if space were made, more space, for loving both myself and others, to have compassion for myself and others. It is difficult to learn that somehow I can hold both the grief and the joys of the memories together, and not get stuck there, or lose myself in the process.
Hold lightly, hold tightly, when to hold, when to let go. Much letting go, much feeling of pain, and much letting go, again and again and again, and it has no end. I am, and will always be, continuing to learn more. Whether it is my dad, my mom, or my Emilee, they are all in my heart and will be forever.
Because I do not plan on dying, nope. I will just vibrate on to another frequency and see all of them, again. And, no one, not even Death itself, will ever rob me of a final hug. Ever again.