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Archive for the ‘Death’ Category


We have all seen a play or two (or a hundred) in our lifetimes. Some are funny, some simply entertaining, some poignant, some shocking. In the past week, I saw two different plays, one a combination of several genres, the other profundly moving me to want to do something.

Tiny Beautiful Things is a play based on a book of essays by Cheryl Strayed, the person behind an advice column called “Dear Sugar,” her pseudonym. She wasn’t a trained psychologist but a good writer, and she acidentally fell into the non-paying job when her predecessor had to give it up.

She explores some very intimate subjects and gives her advice by sharing her personal stories and experiences. She is transparent about her lack of credentials, and gives her advice from the heart – and with heart.

People have joked to me that I have been a therapist since the age of sixteen. People share things with me in supermarket lines, while shopping for clothes, on trains. People I DON’T KNOW! So, its a gift, I guess. The reality is that helping others parse their challenges takes me away from my own problems. And I daresay, I am usually helpful as I help someone see their options or inspire them by sharing my own challenges and victories.

This blog is often filled with such nuggets of advice or inspirations, always from my experiences. My other blog, about nutrition, is also there for the taking: advice on nutrition-related subjects, culled from the science I learned in school, by credentials and experiences. And a third blog which is now dormant, awaits my time and attention, and deals with matters relating to death, dying and grief. There, my experiences surrounding the topic lend some good advice and comfort too.

So I have thought about starting an advice column. I worry it would consume me if it caught on, so I need to think more about it. But it really draws me in. What do you think? I’d like to know.

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Few people are comfortable talking about death. But those who are dying often long to talk about it. Most don’t because they know it is uncomfortable for their loved ones or because they sense it is a taboo subject.

I have been on both sides of the debate; in a position of being near death and longing for its release, and being with those who are dying, supporting their need to talk about it and be given permission to let go when they were ready.

My father suffered immeasurably as he died slowly and painfully with bone cancer. My brother made all the decisions: if he should take the morphine, if it was better to have him alert but in pain, if they should have a nurse help or if he would do it all himself, believing only he could take care of him, if they should disconnect his defibrillator/pacemaker before the day came his body gave in and it would keep shocking him. My sister and I were 1,300 away, so we had no choice but to defer to him, even when we didn’t agree with his decisions. My father privately called to talk to me about hospice, then after he unloaded his needs, made me promise not to tell my mother and brother that he called. They were insistent that he didn’t need it, because they were not accepting the reality of the situation as easily as my father did.

It was a year filled with anxiety. Traveling to where he lived when it looked like the end was near, then having him rally at seeing his girls and or grandchildren who accompanied us on some of the trips. Then a few months of the same and starting the cycle over again. It was a full year before he succumbed, and we were fortunate to be with him when he finally let go. But even at that moment, my mother was still in denial, trying to will my father into living as he drew his last breaths. And me, now the mother to the child, telling her to stop so his last moment on earth would be peaceful; not filled with worry about her. He had already sacrificed enough, holding on for their sake, in spite of excruciating pain. It was time to let him go.

I know how much he suffered because I was in his shoes. Not for as long, not suffering with cancer, but I was in a place of terrible physical suffering. I was not as stalworth as he was, rather begging to be let free of my life so the pain would stop. But my family would not hear of it. And because I was in and out of consciousness, I was sometimes in charge of my destiny, and other times it was ceded to my husband, who would never make the decision to let me go.

Hindsight is 20-20 of course, and now I am glad we all fought for my life, but the memory of that time is still fresh, even 4+ years later. I see every opportunity as a gift, every day as a bonus. My perspective is different. I am unwilling to put up with nonsense because most of it is unimportant. I am able to ask for what I need (most of the time) and say no when it compromises something else more important to me.

But back to the point of this post. Death comes to us all. sometimes willingly; sometimes not. Sometimes too soon, sometimes when we have lived enough and are ready. But it will come, one way or another. So we should consider that discussing death, our wishes for it if we do have a choice, and planning for the matters that need to be addressed, is actually the more practical and kind thing to do. Especially if it is known that the end of someone’s life is approaching. The gift of listening to the person who wishes to talk about it is comforting to both that person and to those who listen. It is a gift to those who must deal with the formalities of death, to grant the dying person’s wishes.

Let’s take the discussion of death out of the closet. It will reduce the fear it instills. It puts death into the category of one of life’s stages to be experienced, in all its complexities, vulnerabilities and honor.

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There are times we think of those who have left our lives. Birthdays, anniversaries, weddings, holidays and memories of special events. More often than not, it is because we have been separated by death.

My friend, who does have a living mother, and children living nearby, is hosting a bunch of her friends (me included) this Mother’s Day. I thought, “How nice. She is inviting her motherless friends to celebrate Mother’s Day.”

As I was thinking about those reopening the wounds of their departed mothers each Mother’s Day, it struck me that I DO have a living mother, yet I am in their company. I’m sure there are others who, for whatever reason, are estranged from their mothers. It’s been four years since I last spoke to mine. The separation was not my choice, but her conditions were out of the question. If I wanted to have her in my life, I’d also have to suffer the presence and influence of my younger brother, who in my mind, is pure evil. After decades of trying to keep the peace with him, and as determined as I was not to allow him to disturb me, he kept finding ways to undo whatever calm I could muster. I concluded that blood or not, I could no longer allow such negativity in my life without risking my health.

So began an estrangement that I could not understand. As a mother myself, and knowing how deeply I love my two children, I could not fathom choosing one and abandoning the other. My mother sacrificed two daughters (my sister and I) for the sake of her son. It started with me wondering, after the last standoff conversation, if she would send birthday cards to either of us. Nope. I couldn’t imagine my children’s birthdays, a celebration of when they entered my life, passing without me needing to connect with them. The bond is so strong, it is almost physical, even long after they have grown to adulthood and moved away. Yet four birthdays for each of us have come and gone with nary a call or card to acknowledge them.

Although I am not a religious person, at the beginning I invoked the serenity prayer. It gave me a framework to “Accept the things I cannot change and the wisdom to know the difference.” There was no other choice for my sister or me, without agreeing to be continually poisoned by the son my mother chose.

Each year it became less painful, like it does when you lose a loved one. It just catches me by surprise sometimes, that I do have a living mother out there, when I’ve been living as if she died four years ago.

 

 

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Do these words, taken in the same sentence, seem like an oxymoron? It is not.

I’ve pondered my reactions to things I read and how I respond to them. Sometimes charged up and angry; sometimes sad and maybe even weepy. I can cry at the drop of a hat; a greeting card, a thought about one of my children, frustration at not being able to solve a problem for someone I love. But no one (not even me) would argue that I am tough as nails.

To summarize my life, I have lived through enough major challenges for several lifetimes. A divorce, widowhood, a miscarriage, cheating death three times, coma, and severe pain for extended periods of times that made me beg for death. When I made those conscious or unconscious “decisions” to carry on in the face of the impossible, there were factors driving it. Twice, when on the brink of death, my children kept me alive. They were too young to be motherless, so somehow I must have willed my body to stay alive. When I was widowed at a young age, I held onto knowing that I had not yet done many things I wanted to do. Making a life with someone, having children, traveling the world. And the “normal” losses like the deaths of my father, grandparents, uncles, aunts, cousins, and many, many pets.

I’ve wondered from a young age how some people seem resilient; impervious to what could be devastating to others. I’ve wondered if it is constitutional, like genetics, personality, or how much it is affected by nurture. I still wonder, as I have not figured it out.

I began this inquiry as a twenty-something-year-old, riding the bus in NYC. A young disheveled, clearly homeless and mentally ill woman spewed horrible words. It appeared she was talking to (or yelling at) an imaginary person. She was distressed and said things that made me think she had been badly abused. I wondered sadly what could have broken her. As I grew older and heard many stories of people triumphing against all odds, not merely surviving, but thriving (Oprah Winfrey). How is it that one person is so damaged that they cannot function, and another succeeds? What factors influence it?

There has been much research on resilience and books written about which factors influence it and how to develop it. But I don’t know that it is something we can quite “bottle.” The human being is such a complex bundle of biology, genetics and environmental influence that no two are alike. No matter what we discover, it will not entirely explain the various outcomes, given similar, even the same inputs.

So for now, I will have to settle for feeling fortunate be resilient, whatever that means.

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Murphy’s Law, if you are unfamiliar with it, says that if something can go wrong, it will. I don’t ascribe to pessimism, so it didn’t occur to me that anything would go wrong. Yet, this time, it did – in spades.

After three hours of probing to find the parts to remove, and much blood loss, my doctors abandoned the robotic surgery and opened my abdomen. (SQUEAMISH WARNING: if you are easily repulsed by medical description, stop here.) Due to multiple abdominal surgeries, there was a lot of scar tissue and many adhesions. An open surgery allowed them a better view of what they were dealing with. Eventually, after 6 hours and a transfusion of 7 units of blood, they accomplished their mission. But not without consequence. The early days were tenuous and my survival uncertain.

During the next 3 weeks, there were multiple additional surgeries (they called them “cleanouts”). I was in an induced coma for most of it, with occasional moments of lucidity when they needed me to answer questions and/or when anesthesia unintentionally wore off. All I can remember of that time are snippets: hallucinations of my surroundings, when later considered, were variations on the same room I was in throughout; never-ending pain that made me want to die; paranoia that others were doing things to me against my will (sort of true when my husband had to act as my healthcare proxy); things I thought I dreamt, when I actually was experiencing them, and things I totally imagined; feeling stupid, angry and frustrated when I couldn’t find the pain pump or nurse call buttons; and did I say unremitting pain?

In considering death, I begged my family to let me go. I had carefully considered the ages of my children. While not entirely grown, they were old enough to survive without me, I thought. It wouldn’t be their preference or mine to leave this world then, but it was a good alternative to the hell I was living. But everyone kept telling me I was strong – that I would survive and that I should keep fighting. All that did was make me angry. They didn’t know, couldn’t know, what I was physically experiencing. I asked for (I think I asked – or did she just know to come?) a trusted Rabbi and friend who listened to me. She reiterated the considerations of entering hospice (no turning back), yet said she would intervene with my family if that was what I wanted. I was heard! My family couldn’t possibly hear me – they were too close to the situation. I breathed my first sigh of relief.

But something interesting happened during that meeting. Because I felt I finally had a voice in what was happening to me, I loosened the grip on my death wish. I got incredible support from the ICU nurses, helping me get out of bed, even if only to slide over to a chair. My family and friends rallied, prayed, sent cards, took care of my husband and son. My LA son came east to visit twice during my 2-month hospital stay, which was shorter than the 4-6 months predicted by the doctors.

To be continued . . . . . . .

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My last blog entry was on September 7, 2014. If you follow my blog, you might think I fell off the face of the earth. As a matter of fact, I almost did – permanently. But by some miracle, I still roam the earth, though the past year has not been without it’s challenges.

Background:

In early summer 2014, I learned from a family member that my father’s line carried a defective BFCA1 gene. My cousin spent the previous year dealing with breast cancer, a BRCA1 gene mutation, followed by a hysterectomy, a mastectomy and reconstructive surgery. Now, she urged all her cousins to be tested for this gene, which has a 50% chance of being inherited from a carrier.

Having this gene defect raises a female’s risk of breast cancer to at least 65% (compared to 12% in the general population) and to 40% for ovarian cancer (compared to 1.3% in the general population). There is also an increased risk for fallopian tube and peritoneal cancer. Men with the gene defect have a moderately increased risk of breast cancer and increased risk of prostate cancer. Both men and women have an increased risk of pancreatic cancer.

I met with a genetic counselor, who evaluated my risk and determined whether I should be tested. Family history revealed many cases of breast and/or ovarian cancers among my father’s first cousins. Also, because two of my first cousins tested positive, I was advised to be tested. No hesitation there.

My results came back positive. Rather than being devastated, I was already mentally prepared to move forward with preventive surgeries, if I had the gene defect. I am a take-charge kind of person, impatient, and unwilling to wait around for disaster to strike, if I can do something to prevent it.

I quickly got recommendations for the best surgeons in my area. They recommended preventive surgery and I was fully on board. I chose to first undergo a full hysterectomy, since ovarian cancer is often not detected until it is more advanced. The minimally invasive, robotically assisted, laparoscopic surgery was scheduled for September 9th. That would give me 4 weeks (more than enough time) to heal and leave for my 3-week trip to France with my husband.

To be continued . . . . . . . . .

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The internet is abuzz with the tragic news of Robin Williams’ death. We struggle to understand how someone with so much talent and apparent good fortune could take his life. Depression knows no socioeconomic boundaries. Everyone is equally vulnerable. But those who share his struggle DO understand.
Depression and mental illness in general, is finally coming out of the closet. Those in it’s grip live with unimaginable demons. They are forced to hide them to be socially acceptable, so often struggle alone.
Being famous or heavily relied upon only make the isolation worse. It is difficult, though he did share his struggle, to disappoint the fans. The world’s response to Mr. Williams’ death confirms this. We are mourning the loss of a future without the enormous contributions he would have made – the potential enjoyment of his considerable talent. People say, “What a waste,” or “I can’t understand how he could throw everything away.”
As someone who has struggled with depression, I understand how driven to despair one can be at times. It has been debilitating, a cause of shame, something to hide, something to get through or get over. And it was totally out of my control as were the events that often preceded those times.
But I have never reached the depth of despair Mr. Williams must have felt, that would cause me to take my life.
Let us be grateful to him for the hours of happiness he gave us, in spite of the tremendous toll it took on him. Let us thank his family for sacrificing him for our pleasure. Let us hope he has found peace after all his suffering. And may he somehow know that his life meant so much to so many of us.

RIP

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