Friday, June 24, 2011

Not Your Typical Friday Post

I think part of my sinking spirits yesterday came from an article I read in a New Yorker by a man whose daughter had died from a very rare childhood brain tumor. One moment the child was a healthy ten-month old, progressing joyfully along the path of development, beloved by her mother, her father, her sister. The next moment, a diagnosis, followed by 108 days of torturous treatments and then death.

The article, which was in the June 13th and 20th edition and which was entitled The Aquarium and was written by Aleksandar Hemon, was honest and gritty and it dealt with how parents cope or do not cope with such situations. Such unimaginable situations.

After reading it, I felt angry. Not at the father or the mother, of course, or even at the disease- disease has no agenda. It just is.
I think I felt angry at the doctors who must have known that there was no way this child could live with such an aggressive tumor which was so rare that there isn't even a chemo protocol for it. And yet, they kept the parents' hopes alive as they kept the child alive, albeit in a state of profound suffering for the rest of her short life. The surgeries, the chemos which wiped out her immune system and created such agony for the baby, for those who loved her and tended her. They allowed the parents to have even a shred of hope so that even as the baby's major organs failed and they gave them the odds of any more interventions helping at all, the parents said, "Yes, please, do whatever you can. Don't let my baby die," and isn't that what any parent would say?

I don't know if my anger is well-founded. Perhaps the doctors did think there was hope. They had more knowledge of what was going on than I do, sitting here so far removed from the reality of the situation.
But I have personally witnessed the keeping of a sure-to-die baby alive by doctors with all of their surgeries, their medications, their interventions and machines to the point where that child's entire brief life was made of nothing but a tiny plastic box in which he laid, tubes everywhere, tiny veins constantly sliced into, tiny chest opened again and again, until the inevitable happened and he died, his parents finally able to hold him in their arms only in death.
Their solace, if there was any solace to be found, lay in the fact that their child would never be cut into again.

And yet, perhaps there is some comfort to be found in the fact that everything which could have been done had been done.
Medically, at least.
I don't know.
But I have to wonder at the way we here in the Western World define doing everything which can be done. Is it really honest and truthful and is it even slightly helpful to do all of the treatment humanly, medically possible when the outcome is so plain? Is it right to give people hope when perhaps there really is none? To offer them the barest eyelash of a miracle when any parent would grab onto that eyelash as if it could offer them safe passage through the stormiest of seas?
Would it be better to offer the parents compassion and help with the reality of the situation and let them live with their child for the rest of whatever life she has, offering palliative care and support so that when the moment of death comes there is not such shock, such disbelief, such a rendering of the soul into shattered fragments?
That there could have been at LEAST a small eyelash's hope of acceptance?

Again. I don't know.

We don't know how to deal with death here. Or suffering. We are not good at that. Here's what the author said about suffering:

"One of the most despicable religious fallacies is that suffering is ennobling- that it is a step on the path to some kind of enlightenment or salvation. Isabel's suffering and death did nothing for her, or us, or the world. We learned no lessons worth learning; we acquired no experience that would benefit anyone. And Isabel most certainly did not earn ascension to a better place as there was no place better for her than at home with her family."

I think that one of the reasons I cannot go along with religion is the very fact that parents lose children, even the most faith-full and good and prayer-full parents. Could there be any prayer more unselfishly prayed than the prayer of a mother to save her dying child?
I doubt it.

And I am not trashing medical science here. It makes great strides and its practitioners, the good ones, save countless lives, give innumerable years of good life to those to who would have died without them and their knowledge, their care, their ministrations. I think of Kathleen's doctor and the entire clinic up there in Thomasville. I think of Kathleen who, if she had stayed with her original doctor, would most likely be dead by now but who instead, is in Spain with her father.

But sometimes, there is no hope and when doctors know that and yet continue to treat and give hope by the mere fact of that treatment, it is just plain wrong.

It is not death which is the enemy. It is our inability to accept it, even to the point of creating more pain and suffering than would naturally occur if we could just try.
We keep people alive. That is what our doctors do. That is their job, as they see it, and yet, all of us, every one of us, will finally and at last, die. When will we learn that?

I don't know but I know I have been present at deaths where there was acceptance and there was pure, strong love and there seemed to be something there which carried us all through the passage together and it was holy.
As holy as a birth and I swear that's true.

And I also know that it's true that if I were in the position of that author or his wife, I would have most certainly grabbed onto what the doctors offered me in the way of hope. That I would have allowed myself to believe that despite everything and all evidence to the contrary, my baby would be the one to live, to be able to grow up strong and as healthy and as smart and unaffected as any child who ever lived. Because that is what I would have wanted to believe.
But would it have been right for the doctors to offer me this hope when as the treatment progressed it became more and more apparent that it would not, in the end, end that way at all?
Where was the point when the doctors should have said, "Look. Your baby is not going to make it. Take her home, love her, cuddle her, be with her for every second that you have with her. Hold her in your arms. Do everything you can to love her until she goes on."?

Wouldn't that have truly been doing everything that humanly could have been done?
Sometimes I think that our godspirit lies not in our ability to try to reverse what is inevitable but in our ability to accept that which is inevitable.

Or to try.

Well. That's what I'm thinking about today and I wish I weren't but I am a human and as such, need to think about such things.
And my heart is sad for us poor humans, our suffering, our pain.

Tell me what you think because I think this is something we all need to talk about. The title of that piece, "The Aquarium" comes from the author's feeling that he was in an aquarium when his daughter was ill. That everyone else in the world stood outside of where he was and that what he and his wife were going through was impossible to share with others. Wouldn't it have been better if we were not so afraid of death, of talking about it, of being so superstitious that just admitting the possibility of death makes us feel as if we are beckoning it to us and the ones we love so that when we or others we love are experiencing something like this, we do not have to feel that we are in an aquarium?
That we could feel arms around us, helping to hold us up, even as we are holding the ones who are dying?

If we weren't just so afraid? Not only to reach out for help but to be able to offer it purely and unselfishly?

I don't know. But I think so. I really do.


  1. Ah, Mary, you have no membrane. You drink in all the pain of the world. it's so hard. but it's beautiful, too.

  2. O.
    My dear friend Laura died two Januaries ago, at age 39, from an aggressive breast cancer. She left behind a husband, three kids. She had 18 months between initial diagnosis and her death, and countless surgeries: a mastectomy, removal of her ovaries, surgery on the cancer that had spread to her lungs. She hauled around an oxygen tank, and was open and honest about all of it. I remember sitting with her at Lake Michigan, about 6 months or so before her death, when she began to know that treatments weren't going to work, and she said, as we watched our kids play in the water, "you know, the worst thing is that I have to leave my kids." I can barely stand to think of it, of leaving my own child, now.

    And once it was December, and they'd realized that there was nothing they could do but keep her comfortable and hospice was brought in, and family and friends moved in and out of her house, and then I was there the day she died in January, in her own living room, her children sleeping upstairs, her husband and mother by her side, and I went to sit with the twins who hadn't been told, and I got to say goodbye and I knew, I knew then that it was one of the most holy moments I had ever experienced and that it was okay: not fair, not what any of us wanted, but okay. I'm so grateful she got to die in the way she did, and that I could experience such a moment with her.

    you're right, Ms. Moon.

  3. This is marvelous:

    Sometimes I think that our godspirit lies not in our ability to try to reverse what is inevitable but in our ability to accept that which is inevitable.

    I wish your were God. You and John Irving.

    I love you so!

  4. What a sad, tragic story. I do think it's ridiculous when people say things such as, "Your child is in a better place now." to a grieving parent. Ugh.

  5. I always think (bitterly?) that if cancer were not such a big moneymaking endeavor for doctors and hospitals and pharmaceutical companies...we would be much more compassionate about the way we deal with it.

    My father, days before he died from lung cancer, and after having almost 2 years of chemo and radiation and all manner of atrocities...said this: "Sissy...if I'd known then what I know now, I never would have let them touch me. I'd have just gone out to the woods, or gone fishing."

    And today, that's pretty much what I think.

    Happy friday, MzMoon...

    haha--my word verification is CHANCES!

  6. I wish we had a similar attitude to death that the Victorians did (who literally had to stare death in the face almost daily). They took pictures of their dead, they dressed them up in beautiful clothes, they had meaningful customs for mourning. They accepted death as the natural part of life that it is. Yes, they were superstitious, because no one wants to lose a loved one (not ever, not too soon, not too old, it's ALWAYS tragic whether the loved one dies 8 or 80). Death is always sudden, it seems. I dunno. I just think we've commercialized life and death so much that it's become a hard marbled fear. And I believe in God. I believe in life, the Universe, death, the divine, and everything after. I believe that life is suffering. And I believe, like you, that we're all in this together and should hold one another's hands a hell of a lot more than we do.

  7. We nearly lost my younger son to asthma a few times when he was a baby. Not the same thing at all but the feeling is that you hope - you can not accept that your child will actually be gone. You believe with all your might that they will get better and the end will justify the means.

    I know parents who lost their child after only a few hours of life. Basic tests showed there truly was nothing that could be done and they were allowed to just hold their baby while she was still alive.

    I know a young man has a misshapen face and will never have children because a doctor refused to refer to a specialist when he had strange symptons at the age of 9. His very rare, non-cancerous tumour was of the very fast growing variety and by the time the Mom found another doctor who would refer, the tumour had grown into her son's brain and could not be entirely removed. He had radiation which affected his pituitary and the growth of his face. This boy is thankful to be alive - and in school to become a minister.

    I've known a young man his entire life who had open heart surgery as a baby - even then considered somewhat experimental.

    In each case, doctors give their best guess at the chance of survival. Sometimes the odds are not very good but parents will grasp the best case scenario even if it is pitiful. Doctors will learn something - even if it's what didn't work. In hindsight, the decision to do everything possible when death occurs anyway seems more cruel but what if it worked? It would have been worthwhile.

    We can't ask a baby if they think it's worthwhile but babies want to live too. Every scrap of life out there, however hard it struggles, wants to live (except depressed people and I think they too want to live - just not that way). Young children will very willingly submit to "bad" medicine if they believe they will get better. At least my kids always did - even if it was nasty tasting medicine.

    The parents here, in retrospect may have felt they were gypped out of quality time with their daughter in a hopeless scenario and their daughter was deprived of any quality of life, but just like the gambler who loses everything on the chance of a win, however unlikely, it seems like a good idea at the time.

    I think they chose correctly. Regrets aside, if they believed there was the slightest chance of success, and they didn't take it, then they'd have felt they murdered their baby when she died. Now, they can blame medicine for false hopes.

  8. well....I agree. Our fear of death and dying is a great weakness and is probably responsible for most of our really bad choices in life. If, like the Tibetans, we grew up knowing and accepting that we were headed for the bone yard, I can't help but believe we'd be the richer for it.
    wv: goonicat
    I like that!

  9. Angella- Do you think that's it? I don't know.

    Sara- That made me cry. I am so glad you know what I am talking about, that you got to experience that holy moment.
    Thank you so much for sharing that. What a beautiful story of such a tragic thing.

    Ms. Bastard-Beloved- I love YOU so much.

    Lora- Honestly. Did that ever comfort anyone in the history of the world?

    Akannie- Well. I think your father did what he had to do, even if there were regrets. I am so sorry.

    silverfinofhope- I think things changed radically when people began to be born and to die in hospitals. Life because something else entirely- a medical proposition. I am not sure I am with you on the life is suffering thing. Sure, there is plenty of it, but I do not believe that suffering is our purpose here. I think it is just a side effect of living but that yes, it would help if we could all be more open and loving in the face of it.

    Jeannie- First off, let me say that the author of the article did not blame the medical community at all. Not one bit. They were the only ones he and his wife felt comfortable with in their aquarium.
    If you read the article, you will see what I am saying. No. It is all me who questions the determination to continue treatment when treatment is cruel and of no use.
    Yes. There are stories galore like the ones you speak of. The boy who grew up misshapen but whole of spirit, the baby who survived open heart surgery. But there comes a time when even the doctors know that there is no hope. They do. I remember when my sister-in-law was dying and the doctors were determined to keep on with the interventions which were leading to more and more life-threatening problems as the original problem was not solved, could NOT be solved, and she was in a coma and not responding and it was a nurse who took us out into the hallway and said, "Look. She could be suffering. We don't know." And the family made the decision to end the respirators, the medications, the machines. She died in under a moment. We did not murder her, we let her go and that nurse was an angel to help us make that decision.

  10. Ms. Planting- I agree. Yes. And I will gladly be a goonicat.

  11. I think that the desire to live is so strong that we do try whatever we can to stay alive. In the end, if the treatments are unsuccessful, then we can let go knowing that we have done all that can be done. For the baby, she could not choose. But the parents went with their choice. Did they ever ask the doctors, will she make it? Will she live? I want to know the facts and the risks. Then I can make a decision. My cousin is still alive with a glioma brain tumor. According to statistics, he should be dead two years ago. Yet, he is alive and cognizant. Miracles do happen. And at the end, we still grasp for the light, hoping for that miracle of a few more hours of life.

  12. Syd- The parents did not want to discuss odds and the doctors followed those wishes.

  13. I don't know the answers to any of this, Ms. Moon and have all the same questions and nearly the same feelings about them as you. I do know that I often fantasize about picking my own daughter up in my arms and fleeing with her to some other place where we can just be. Just be.

  14. Elizabeth- My heart cries out, "Me too. Oh, me too."

  15. Ms Moon the most profound thing here, for me, was where you emphasized 'humanly possible'. This is the key. If we can do everything we can do but accept when we know it is not working, there is grace there and while we owe it to our children to do every damn thing we also owe it to them to help them find the deep love and peace that is available to them when they would most need it.

  16. The thoughts on this exhaust me. Is there a right way to do things? Is there a wrong way? I find the saddest part of all of this is that children even get sick in the first place. It is so fucked up. When my daughter was diagnosed with Neurofibromatosis a part of me died. At my age it is one thing to lose a parent to cancer, it happens. But to lose a parent when a child is still a child is another. Too lose a child is unfathomable. I don't know. The older I get the less I know about anything.

  17. Maggie May- I think you are right. Where is grace in all of this? We must make room for that, too. Grace and whatever peace can be found.

    Birdie- Well, sit by me. I do not know shit and like you, the older I become, the more profoundly I realize that.

  18. Well. My mother wanted no alopathic treatment when she found her breat lump, and had 8 years of good health, followed by two weeks of illness. I wish she'd got her cancer monitored, but I think it's true that a diagnosis would have killed her. It did in the end, maybe. She just couldn't face the idea of hospitals and all. People see it as selfish, and don't understand, but I do.

    I think she would probably choose a similar path if she could do it over.

    It's hard to read stories like these ones, about a painful, undignified, agonising struggle through such violent therapies.

    Then there's my homeopath who recovered from both leukemia and a brain tumour using homeopathy and herbalism. However, she came very close to death three times, and was willing to let it happen - that was a gamble, it's not for everyone.

    When I told her about my friend's son with the brain tumour, she just shook her head, said, no, not with children, the suffering isn't an option you can choose for them. He went through some treatment, but the hospital knew it wouldn't do much, and he died sooner than expected from secondary infection, after going back to school.

    It's tragic, and there was no good outcome to be had there, I suppose.

    I do think though, that as humans, we're too frightened of death, too unable to accept it. So we think we must do every last bitter thing we can to avoid it. Don't get me wrong, I would feel the same with my child, though I think, for a ten month old, I would have found the treatment more awful than the death, I don't know. Horrible story, my heart goes out to them.

  19. If the desire to live is so strong, why don't we live more instead of sleep walking through life? We have our priorities quite screwed up, I think. Maybe if we can become more present in every moment of life, the letting go of it will come easier. If we are more responsible for our own health and our own life, we can take more ownership of the process of our death.

    I feel great love and compassion for parents who must struggle with serious illnesses and/or death of their children.

    Be ware of the Health Industrial Complex!


  20. I'm with you Ms. Moon about being born and dying in hospitals making the difference.

    My mother is from an older culture and was born near the end of the line at 3 pounds, 85 years ago. There were no incubators, yet somehow she survived and remains happy and feisty. Her Aunt Esther who attended all births said she was 'like a yellow guinea) (jaundiced?) and too small to bathe, so they rubbed her down with olive oil and wrapped her in cotton batting and she was placed down the front of her mother's dress in her bosom. Only half of my mother's siblings survived to adulthood, so my Mom was one of the lucky ones.

    Aunt Esther was also called when someone died. She would come to the house and prepare them to be waked, bathing and dressing them, usually on the kitchen table. With dignity and care and in their own surroundings she would clean their nails and comb their hair, these last intimacies and final grooming performed by someone who knew them in life. I don't know if she was given anything for this, perhaps some token and a few prayers. The dead were then waked in the parlour with food, drink, stories, music, song, dance, and sometimes, before the end of it, brawling. All the ways folks can express every emotion felt, with all the things human beings need to grieve.

    The quick 'visitation' in the anonymous funeral home on a weeknight after work with the guestbook and the whispering and the stiff formality of trying to grieve in public is a poor substitute, in my opinion.

    The last time Mom's mind was right was at the funeral of her last sibling, her baby brother. He died in the old way as much as is possible, with kids and grandkids and great grandkids by his bedside and in the bed with him round the clock, surrounded by loving family and never alone as he waited to go. Mom sang at his graveside, drank and danced at his wake, and the next day she started to lose her shit. My siblings have tried to have her diagnosed but all tests are inconclusive. It is what it is, it doesn't matter why, it just matters that she is taken care of.

    Life is so funny, but still very precious, even when diminished.

    OMG sorry for the blong.


  21. Jo- Your mother was one-of-a-kind and I respect that she did what she wanted, did it her way. I agree with your amazing homeopath and I think she's right about the babies and children- we can't let them "decide" and it is up to us to do whatever we can. Until there is no more to be done, if that point comes. I love you, Jo.

    N2- I agree with every word you wrote. Thank-you.

    Invisigal- Perfect. Yes. We have given birth and death to the professionals and thus, life itself. And have become scared and frightened. I always think of the Dionne Quintuplets, born in a cabin so cold that the midwife put them in the warming oven and they all survived- how amazing! Of course, that was most unusual. But at least the ones who survived the no-tech days were hardy and strong. I don't know. Please never apologize for a long comment. Okay?

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Tell me, sweeties. Tell me what you think.