Oneness

I was in the hospital a few weeks ago for uncontrollable pain and vomiting.  While there, I also developed sudden and profuse vaginal bleeding, which I discovered in the middle of the night and which freaked me the fuck out.  It turned out the blood thinners they automatically give patients to prevent potential clots that can result from lying around all day long had aggravated the mets in that part of my body and they had begun to bleed.  I was there for four days since they put me on a pain pump and then had to transition me off in lieu of the Fentanyl patch and since we had to wait for the bleeding to gradually subside.  The hospital is a desperately lonely place when you know you are dying.  Unlike my previous hospitalizations, this one was…empty, futile, pointless; it was devoid of all joy or hope or life-affirming possibility.  I had birthed no babies.  There had been no surgery to successfully remove cancerous organs and tumors.  There wasn’t even a promising clinical trial that necessitated the forced observation, confinement and attachment to machines.  No.  I was there simply because my body was deteriorating, beginning the process of dying, and I couldn’t handle the physical turmoil that was causing without medical intervention.

The minutes stretched into long monotonous hours, broken up only by the occasional text, phone call and visitor.  But I didn’t feel like talking and mostly ignored those who reached out to me. Why should I talk to anyone?  Communicating with others just reinforced the isolation I had been feeling for weeks, ever since the scans had confirmed the clinical trial wasn’t working, reminding me of the ever thickening  high wall that existed between me and the rest of the world.  It reinforced the fact that I was stuck, literally and figuratively, in the hospital while they were out and about, shopping and meeting friends for dinner and kissing their kids good night, that I was dying while they were living.  It was a foreshadowing of what was to come.  Soon, I would be dead and everyone else would continue to live.  After the requisite period of mourning, everyone would go on with their carefree, joyous lives and eventually I would become a mere distant memory, more often than not forgotten in the wonderful business of their lives, and then lost forever to the amnesiac power of time.

I finally told my best friend of 24 years that I was in the hospital after two days because I felt like she should know.  I skipped over the medical details and the results of the most recent scans in the hospital (which of course showed more growth but nothing to explain the pain).  Telling her would make no difference.  It would simply assuage her curiosity but it wouldn’t fix me.  Besides talking and thinking about me was invariably depressing for both of us.  I quickly changed the subject to talk about her.  She is an actress, and after years of trying, she had landed her first significant role in the pilot of a televised series.  It was a monumental achievement and I was so very proud and happy for her.  And yet…I felt so very sorry for myself  What I wouldn’t have given to change places with her, with just about anyone for that matter, in those minutes, hours and days.

What was I to do with all the jealousy, bitterness, sadness and loneliness eating away at my heart just like the cancer was eating away at my muscles and organs and my very life force?

I’ve always believed in talking through my problems as a productive way to release negativity.  I’ve always believed that expression is preferable and healthier than repression, that every heartache and emotional pain I had heretofore experienced could be understood by another human being and that another human being could always make me feel better about whatever the problem was by virtue of that understanding.  Marital problems, stress at work, inadequacy as a mother.  But facing Death hovering at this proximity to me was not like any other problem I had ever known.  Nobody knew what to say to make me feel better.  Nobody could offer me solace or consolation.  In fact, another friend said, “I’m really sorry.  I don’t know what to say.”  Of course, nobody knew what to say since nobody around me was actually dying.  Not even trained mental health professionals knew what to say since they had never known what it is like to die and whatever they did manage to say seemed hollow and trite.  Not even those with metastatic cancer could comfort me because most are not as far along in their disease as I am, and those who are as far along are holed up somewhere in their loneliness or denial or some combination of both.

And then I realized that I still had to actually die, that my suffering was far from over, that I had to actually watch my body further deteriorate, that I had to actually know more intense physical (and emotional) pain, that I had to experience the actual failure of one or more of my organs,  Possible labored breathing and then oxygen deprivation from constricted airways as the lung tumors grow bigger.  Possible bile build up and resulting hallucinations from blocked liver ducts.  Probable starvation as my bowels became obstructed.  How I longed then to fall asleep and slip into glorious oblivion, to not care about anything anymore, to just sleep and rest.  But there was no sleep and no oblivion and no rest.

And then I thought of my friend Rachel, who died of colon cancer last November.  She must have felt the same loneliness I felt in all those weeks she lay in bed, too weak to do anything, as her tumors consumed her liver.  And I thought of my friend Chris, who died two years ago who wondered in his last days as he suffered with pain why his body was still holding on to life when his heart and soul were ready to leave.  Even at the end, as inevitable as his imminent death was, it still seemed unreal, unbelievable to him.  I thought of my friend Carlyle who expressed to me her fear and belief that she would not live to see another Christmas with her three young children, a fear and belief that turned out to be justified.  Yet, her deep faith in God eased her fears.  I thought of my friend Leta who I spoke to two weeks before she died and remembered the anger and bitterness in her voice when she told me how she was shutting everyone out, except for a select few.  We joked and laughed with scorn about the Slutty Second Wives our husbands would marry.  I thought I had an inkling of what they were all  going through but looking back I know now that I had no clue.  How could I?  I was so far away from death relative to them.  Looking back, I’m ashamed of the inane, vapid and entirely inadequate words of advice and comfort I offered.  I knew nothing.  But now, now I understood much better.

I had gleaned fragments of their experiences of dying, as well as those of countless others I have encountered during these past four years, through phone and messaging conversations, through their own occasional words on support group forum postings, through the accounts of their caregivers.  And now, in those fragments, I saw myself and a comforting oneness in our emotions, in our envy and sense of surreality and incredulity and rage and fear and grief and loneliness and, in an unexpected contradiction, our readiness and desire to die.  And it was in that oneness that I drew blessed solace and consolation.

It then dawned on me as I lay in that hospital bed that rather than offering a sparse and fragmented look into my dying experience (as others had offered to me), I wanted to offer and leave behind something more coherent and complete for the world, such that when your turn comes as you face death, whether it be from illness or old age (for you too will die as hard as it may be for you to believe), you will not feel as lonely and sad as I did, and you will also hopefully know a oneness with me.  And perhaps that sense of oneness will ease the pain of confronting your own mortality.  I reject with every fiber of my being our culture’s fear of acknowledging, speaking of and thinking about death.  I seek to bring the experience of dying into the light, to demystify it, to make it less frightening and taboo, to confront it and the myriad of conflicting emotions that come with it with clarity and honesty.  This is my goal for as long as I am able.

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21 Comments (+add yours?)

  1. Gina Morse
    Aug 31, 2017 @ 14:13:31

    Sharing your experience with the intent to ease the transition for others is beyond amazing. May peace and love surround you, now and forever.

    Reply

  2. Giada
    Aug 31, 2017 @ 14:14:26

    there is no way i would go through that process of dying that you describe, if given a choice. the choice is the rub. i have already rejected life lengthening procedures so I think I know what I want when the time comes. but we never know what we will do, really do, when faced with the situation. i hope when my time comes that I am able to go early — avoid the worst of the pain and lingering. I hope your death comes softly.

    Reply

  3. Jacki
    Aug 31, 2017 @ 14:20:01

    Julie,
    I admire your strength & frankness. To share your feeling while facing death is a gift to us all to better understand. You continue to share & give through your suffering which is so honest and generous. I wish I could ease your suffering. Sending you love and compassion💙.
    Jacki

    Reply

  4. Julie Zier
    Aug 31, 2017 @ 14:23:04

    god bless you Julie. I lost my husband to this horrid disease last september. I had no idea what to say to him as he asked me, “am I dying?” I know it is hard to imagine but you are a true comfort to those who are going through or have gone through this like I have….much love.

    Reply

  5. Laura Bennett
    Aug 31, 2017 @ 14:38:00

    Too bad in the online support groups there isn’t a group of the people who have already died there and willing to help ease the dying through their transitions. Your words conjured that image to me. I remember my friend Patsy who was diagnosed Stage 4 before my Stage 3, talked about not really knowing when she was going to die because she never had and didn’t know anyone else who had, same thought. You are brave and generous to share your thoughts and feelings. Much love to you Julie.

    Reply

  6. Damion C Hancock
    Aug 31, 2017 @ 14:50:35

    Thank you for being you. I will always be grateful for the little time we’ve spent together. You always have inspired me, even from afar. Until the day I die I will draw strength from knowing you. I have a feeling when my time comes to die, I will probably have similar thoughts to these in your blog. I doubt I’d have the strength to talk as honestly about it as you have. You are the strongest person I know. I think in the ghost realm, when the physical doesn’t matter, you’ll be a goddess.

    Reply

  7. Berta
    Aug 31, 2017 @ 15:47:35

    Julie…none of us get it. But this writing is genius and you are inspiring all of us. I wish I could remember you to your daughters but, while our kids were at the same school for years, mine is older so I never knew you. I would see you at Court Street Grocers and wish you well, wish you healing—what else can strangers who know your situation do? Maybe all I can do now is tell you I think you’re incredible. You have changed the way I live. You have inspired my mothering. You have straightened my spine and fixed my eyes on what matters. Thank you. No one will forget you, and def not your babies. Guaranteed.

    Reply

  8. ellen
    Aug 31, 2017 @ 16:09:22

    You are an inspiration, Julie. Taking the time and effort to share with others is truly unbelievable. Wishing you peace…

    Reply

  9. Mary King
    Aug 31, 2017 @ 19:15:04

    May God Bless you Julie. Your writing, as always, makes me drop what I am doing and simply listen and pray. ‘Thank you’ is inadequate in the face of this, but perhaps knowing you have left a legacy to the CRC community and beyond will give a small smile to you. You will not be forgotten! even by people like me who never had the opportunity to meet you. And, you are correct. We are all just a mere step behind you in our mortality. You are not alone.

    Reply

  10. Victoria Ostezan
    Aug 31, 2017 @ 20:46:04

    Just another selfless act out of you dear Julie!
    I so wish more people were like you! Heavens, if I could be half the woman you are I would be pleased with myself! You are blessed with so much….the ability to communicate the most difficult of feelings in such a beautiful way….truely a blessing to all of us and I know will be to your little ones in time.
    PRAYING GOD CONTINUES TO BLESS YOU IN EVERY WAY

    Reply

  11. Gloria
    Aug 31, 2017 @ 22:11:06

    I don’t know how I ended up here but I can’t leave without writing that you’re a genius and gifted writer. No way such bravery and grace can be forgotten. So very rare and special. God bless you and your family in every way possible.

    Reply

  12. bethdoerksen
    Aug 31, 2017 @ 23:02:23

    i discovered your blog last year and then read my way through the archives this spring. i have found joy reading through the emotions and thoughts that you have shared. so many of them ones i have experienced as well. after finishing my 12 rounds of Folfox in February I had a break in chemo only to discover my one remaining Lymph node grew exponentially through the summer. I have more tumours in other nodes now and it is spreading rapidly through my lymph system. i have been searching to find information on what dying might look like and what kind of timeline it could look like but haven’t been able to find much. i tried to discuss with my oncologist at last visit but she couldn’t give me much in the way of specifics because my case is so unusual. i guess in any case i would rather hear about experiences from those who lived them. i am interested in any information that you share since your writing tends to be honest and raw.

    Thank you for sharing yourself with us.

    Beth

    Reply

  13. Kispangit
    Sep 01, 2017 @ 12:00:23

    Bleeding is no good, indeed. But it is not over yet.
    Death is nothing but a transition to the Hereafter. That’s when it gets real. We can no longer do anything for ourselves then.
    Use your time wisely, it seems to be running out. Think about your past deeds. Repent the bad ones. Pray for forgiveness to the Almighty Creator. Be sincere. Heaven is not granted, we all have to work for it.

    Reply

  14. Barbara Gettelman
    Sep 01, 2017 @ 12:45:21

    I am a writer and a reader. You have taken me to a place I could not have imagined. I know I will be thinking of you when my time comes. Meanwhile I hope to be able to somehow reach others because of your insights and courage in facing and sharing your future.

    Reply

  15. Sue Theeck
    Sep 01, 2017 @ 15:55:29

    Julie, I wish for you peace and comfort…thank you for being so open about your feelings…I pray for you…all of us…every night….hugs on their way from Michigan to you💗

    Reply

  16. Eric
    Sep 01, 2017 @ 20:54:52

    Julie, I felt sad reading about your hospital stay but I sincerely think your body can continue to fight this cancer for many more months to come. As a stage IV cancer patient myself, I’ve learned our body can be incredibly resilient and you’ve shown that. Please try to take care of yourself and stay strong.. You are an inspiration!

    Reply

  17. Carrie Basas
    Sep 01, 2017 @ 21:29:37

    Thank you, Julie.

    Reply

  18. Nuria
    Sep 05, 2017 @ 04:50:47

    Thank you. So meaningful. So generous. Again in the face of fear and loneliness, you are bravely showing us the way. I am listening. As prior posters said: I know I will think of you when my time comes. We will all be one with you.

    Reply

  19. Lilly
    Sep 06, 2017 @ 09:51:03

    I think of you often. I speak with my cousin who is dyING and think though I will face the days you and he experience now, it is not yet in my proximity. I am not religious or too spiritual, but I think of you constantly. You put into words all these feelings I have had. The second wives things, the young kids, the jealousy for things that I feel have exited my life (the ability to hold a job, raise my kid, care for myself)… and then I stop myself from too much self-pity. Because what I still have is LIFE, and DEATH does come but it is a final point that looks so different when we come closer to it. I am so sorry you feel alone. I am always thinking of you.

    Reply

  20. Susan Van Metre
    Sep 08, 2017 @ 10:13:26

    You are a warrior. I am in awe of you.

    Reply

  21. Wonn
    Sep 14, 2017 @ 02:35:52

    Thank you for sharing so much of your life with us, you are truly amazing

    Reply

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