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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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The following is from a letter I wrote to my sons five years ago. I never published it then as I was too raw and overwhelmed at the time. I came across the email today and decided I could share it, though God knows, the danger has not passed. If anything, there have been far too many more incidents of violence since. So many that we are becoming numb. This email reminded me to remain vigilant and hold onto my sons, no matter how old they get.

Dear J and D,
Ok, this is not meant to embarrass you but I wanted to share my feelings with you …
It’s been an emotional week. The bombing in Boston, just on the heels of the Newtown tragedy, has stirred my feelings of helplessness to protect my children in this crazy world.
No matter how old your children are, when a tragedy strikes – anywhere – a mother’s first instinct is to want to hug her children, as if doing so will assure me that you are ok and that I can protect you from harm. These events prove to me that we can’t always do that and it is painful to know that you must eventually protect yourself as I won’t be here forever. And even while I am here, I can’t control random crazy peoples’ deeds. So I tried to prepare you for the world as best I could. But when unexplainable things like this happen, I feel so powerless.
Yet, in spite of it, I know there is goodness – lots of it – shown through the many acts of heroism, bravery and kindness when terror struck. And that helps maintain my faith in humanity.
But no matter what, I needed to give you a hug the moment I saw you when I came home. At least I saw with my own eyes you were safe for the moment.
I am incredibly proud of the men you have become. Sensitive, with the belief you can and will make your marks somewhere on humanity. It doesn’t take a lot to change a life.
So, live your lives fully, in spite of the naysayers and the crazy, deranged people, without fear and with compassion. And remember I am by your side, whatever path(s) you choose, and throughout your lives, whether I am here on earth or in your memories.
Love you forever.

Mom

 

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I love to write. Just as I love to make art. But it is an interesting struggle to do it. On closer inspection, both have one thing in common. Both are creative expression, and had been so stifled in childhood that it feels almost forbidden. My mother forbade me to go to art school, in spite of a teacher who advocated for my talent. Standardized tests (SATs included) measured my writing skills as paltry. So what was a young girl to do but shut down the creative instincts. From time to time I wonder what my life would have been like if I had let loose all these urges.

Despite years of therapy and self awareness, at age 63 I still fight with myself about using all the tools and supplies I’ve been able to afford. I hoard them. As any artist knows, paints and glues dry out and end up wasted if not used. Then I tell myself I have to do all my “chores” before I get to play in my well appointed studio. So it collects a lot of the junk we move out of other rooms when we clean up. And starting an art project means first having to make the space, which adds to the amout of time I need to get started. So it happens too rarely. Crazy, right?

I know it’s crazy, and I hate feeling I don’t deserve the time to create. Yet it is not only a desire to create, but a NEED. My therapists have given me strategies to “make time for art,” to put it on my calendar, and I have. But life always seems to get in the way and push it aside in favor of something more important. But is any of it really?

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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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Our annual trip to Maine was up in the air. Should I go so far from my medical team (8-10 hours by car)? If not, should my husband go for his much deserved vacation and leave me home alone? How would cars be juggled? Would I see my west coast son if I didn’t go? All these questions had to be considered. I had already cancelled my teaching obligations and gave up any possibility of attending any art classes myself – two of the things I look forward to each year.

As we approached the weekend we would leave, I felt good enough to chance it. We planned only one week, rather than our usual two, to hedge our bets. Being in the woods, sitting on a screened porch overlooking a lake was just what the doctor ordered. I spent little time in the kitchen. My boys and their friend cooked and we went out to dinner. I even ate a 2.5 lb. soft shell lobster!

The healing power of family and nature is certain. I was out of bed all day (albeit resting and sitting a lot). When I got back home, I was able to be out of bed, doing things around the house, food shopping, laundry, etc., before tiring.

Now that I feel some recovery is occurring, I need to face the rest of the journey: another surgery in the risky zone and a minor one to complete the mastectomy/ reconstruction process. But I have survived this nearly one-year nightmare and feel almost human again, and that counts for something.

This portion of the experience is being wrapped up with this post. If I write any more about related subsequent events, they will stand on their own. Thank you for sharing my journey with me.

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My cousin’s favorite holiday is Thanksgiving, and we shared the holiday with her and her husband for many years. This year, she was in the midst of packing to move and I wasn’t travelling, so we endeavored to have Thanksgiving at our house, even though I wouldn’t be able to assist in preparations. Our family, cousins and sister’s family chipped in on the cooking and cleanup to make a beautiful Thanksgiving feast. And to my utter delight, I was able to take my first bites of food beginning that week. Thanksgiving was particularly poignant as we all were so grateful for my survival and beginning recovery. Recovery began and proceeded, marked by small advances through December and January. One drain out; then another. First shower. First food after months of IV feeding. Weight gain (I had lost 15 lbs.) Walking further. Driving. Pain lessening. I scheduled the prophylactic mastectomy for June, sure I would be well enough to have the next surgery in seven months.

To be continued . . . . . .

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