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Preface: I just reread my last post, written nearly a month ago. I love the optimism in the conclusion, my happiness at being home amidst all my fixed points. Alas, within a few days I had somehow suffered an injury that left me with a pulled piriformis muscle and a resulting pinching of my sciatic nerve. (I know, this is too much information for most of you!) The result has been intense pain such that I have rarely experienced (48 hours of labour outdoes it but that was long ago, and with an excellent result!) It’s given me a new perspective on pain, on how exhausting and debilitating it is – and yet how largely invisible pain is, and thus people can assume (wrongly!) that it’s no big deal.

Many times over the past weeks, I’ve thought about how people reacted to my sister’s pain – suggesting she might be exaggerating or even making it up. I remember the orderlies who demanded that she “scoot over” onto their gurney from her hospital bed. Riddled with tumours up and down her spine, she could barely move, let alone “scoot over” upon command.

My sciatic pain was nothing compared to hers, which is why I hesitated to write about it. But as a nurse I worked with yesterday at hospice said, “it’s certainly not a lot of fun.”

All that to say, I haven’t been sitting at my desk for a long time – hence my silence here.

As readers may remember, yesterday was the 20th anniversary of my sister Carol’s death. As the date approached, I’ve thought a lot about the impact of her death on my life, and about what it means to lose a sibling. So I will share some of those thoughts here.

I fully recognize that not all siblings are close, often separated as they are by geography, age and even generation, by life choices, and historic grievances tracing back to childhood. Though my sister and I had had a few low points in her relationship (especially when I became a hippie and frequently criticized her for taking a “straight job.” I was insufferable!) But once I came to my senses and returned to university to become a teacher myself, our bond grew closer and closer.

When our mother suffered a massive brain aneurysm, Carol and I promised we would care for one another when we were sick or in need of help. And I was able to fulfill my half of that bargain when her cancer (originally diagnosed in 1978) returned with an unstoppable force in January 1997.

As often happens when someone is seriously ill, we became closer than we had ever been. Spending hours together, watching videos and bad daytime TV, remembering our childhood antics, talking about hopes and dreams (and fears).

When she died on July 4, 1997, I was devastated. Even though we all knew the end was coming, we had focussed on the immediate – tests, blood transfusions, medications – anything to make her more comfortable. My days were taken up with helping her, organizing her care, and commuting back and forth between Toronto, where she lived, and Ottawa where my immediate family resided. And then, suddenly, all that was gone. After months of thinking about what Carol needed, I had no idea how to carry on.

One of my strongest memories from that period was my desire for some sort of visible sign of my loss. A black arm band, a long black dress (as worn by widows in the Portuguese and Italian communities where I had lived for many years) – something to indicate that I was in mourning.

Though friends and colleagues sent cards and flowers immediately after Carol’s death, soon enough (far too soon for me) they began to carry on as if nothing had happened. Yes, I had a brand new job as the Director of Women’s Studies, and there were responsibilities I had to fulfill. But I still needed consoling.

What I found so difficult was the silence. Perhaps people didn’t know what to say.  Perhaps they found my bereaved state frightening. I had certainly been in their shoes before Carol died.  But now I experienced first hand the impact of avoidance and silence.

One factor, I think, was that most people my age had not yet experienced the loss of a close contemporary, be it a friend or relative. I was only 47 and Carol, just 51. While most of us experienced our grandparents’ deaths, and some of us, parents, siblings were part of the fabric of our lives, people who knew us from the very beginning (or soon thereafter), people with whom we could still consider ourselves young and more or less invincible.

At hospice, I see many people who are faced with the death of a sibling. I can still vividly recall the first person – her sister was a teacher, as Carol had been, her career and life now cut short by cancer’s horrible force. Her sister brought in baked goods almost every time she visited, and she would share the lemon bread, blueberry muffins, and other treats with the staff and volunteers. It was something concrete she could do, when there was nothing she could do to prevent her sister from dying.

Though we are not supposed to talk about our personal lives, I told this woman that my sister had died four years before. We didn’t discuss details, only that I, like her, had been her caregiver. She thanked me for telling her about my loss, and I could see her shoulders relax as she realized that she was not the only one.

Several years later, I bumped into her on the street.

“You know what I tell people?” she told me. “I tell them that when I met you, and I could see that you had lost your sister and you were still standing, and volunteering even, I knew I would survive the loss of my sister too.”

After Carol died, I searched for books that might help me deal with my loss and grief. While there were many books on parental and spousal loss, I found virtually nothing about losing a sibling. It’s one of the reasons I started writing about Carol around the time that I took the hospice training. Not only did I want to honour her with my words, but I wanted to let others know that I understand what it means to lose someone who has known (and put up with) you your entire life.

The death of a sibling can leave a deep and abiding void in one’s life. There will never be another Carol in my life. But I am grateful beyond words for what she taught me. And for the ways she has enabled me to help others through their loss and grief.

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When I started my post earlier today, I thought I was going to write about why I had to cut my Provincetown writing trip short. But as often happens when I sit down to write, the words take me somewhere else.

Two and a half weeks ago, I packed up four file boxes of writing, a bin full of writing tools (pads, pens, extra computer, many books, printer cartridges, label maker – of course!) and headed off to Provincetown for my annual writing retreat. I’d booked four weeks this year – two of them in residence at the Fine Arts Work Center where I took my first writing class in 2001 and two of them at the Cape Codder Guest House where I have taken refuge every year since then. I was excited as I drove the 10 hours to my destination (in two days) and thrilled as I set up my computer on the desk in studio 4.

Unfortunately, by the first evening, I had a sort throat. By the second, I was blowing my nose non-stop, and by the third I was in bed, trying to find my voice again, and cursing the germ that had settled into my lungs. Grandchildren germs, I thought, remembering the coughs my daughter and her children were sharing freely before I left Ottawa.

I didn’t curse for long, however. Instead (perhaps miraculously) I found myself contemplating what opportunities being sick was offering to me. No, I didn’t think it was meant to be that I should get sick. But yes, I did find myself thinking, as I often do when I get sick, about the fragility of health, and life itself. As I lay in bed in this foreign land, I found myself appreciating the Canadian health care where I could visit a doctor without ever seeing a bill. (I’m always a little scared when I get sick in the US as I do NOT want to have to visit a US medical facility!) I appreciated my family (even as I wished I were closer to them at that moment), the many drug store items I had brought with me so that I didn’t have to spend precious American dollars, and the super duper soft Kleenex I splurged on, to soothe my weary nose.

I thought about how little I really needed – a salad from the health food store within easy walking distance, some chicken from Farland, my favourite lunch and provisions store. The lack of sun (and abundance of rain) made it that much easier to lie in bed and read or watch Netflix – and if I ran out of reading material, Provincetown’s fabulous library was just up the street.

For the most part I wasn’t able to write (hence the lack of blog posts for the past while), except for some scribbled pages at Harbor Lounge, three small blocks from my studio, with a fabulous view of the bay and the wharf (and wonderful cocktails and wine -the sign says it all – no food, just booze!)

By the end of the first weekend, I was feeling pretty proud of myself for being able to manage on my own. That’s when I noticed that I was scratching my head far more than usual – in fact, I was crazy itchy. The explanation arrived on Monday morning, when my daughter told me her children had lice. A quick try to the Shop and Stop (as I call it) for a comb and conditioner and I soon discovered that I too had lice. Not a million, but really, isn’t one more than enough.

I have to admit I was ready to throw in the towel at that point. Coughing, blowing my nose, achy, and now, LICE. My intrepid partner soon tracked down a lice lady on Cape Cod and urged me to give her a call. Feeling somewhat ashamed (who feels good about having lice?) I called the expert known as The Picky One. She sounded lovely – very matter of fact but kind – and we arranged for her to come to my studio the following day at noon.

To say I enjoyed our time together would be pushing it. She was, after all, picking nits off of my head. But we talked about aging parents and caregiving, and the challenges of dealing with children and parents at the same time. I told her about my book. She told me about how her father’s death had changed her. Before she left, she bought a copy of my book, and the next day, wrote to tell me she was crying by page 6 – while offering reassurances about my itchy head.

Many many loads of laundry and trips to the somewhat grungy laundromat later, I was ready to pack it in. I itched, I was still coughing and blowing my nose, and I still felt pretty miserable. My partner flew down to “rescue” me, we spent a beautiful sunny day in Provincetown, and then headed back home. As I packed up all the things I hadn’t used, file boxes unopened, art bag untouched, books unread, I admit to feeling regret that my retreat had not been as I had hoped.

But my time in Provincetown provided me with some important reminders – about taking care of myself, about letting go of expectations, about being with whatever happens. It reminded me of how much I like my life with its fixed points: hospice, volunteering with kindergarten children, playing the ukulele, spending time with my family and friends, walking by the river, singing in my choir. And I’m happy to be home again.

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When my father was dying, I often found myself saying, “I wish someone would tell me how this ends.” It wouldn’t take more than a minute before I’d catch myself. I knew very well how it would end. I knew it would only end when my father died. Whether peacefully (as it mercifully turned out) or with enormous suffering (as I rarely see at hospice), it ends in death.

And the fact was, I wasn’t ready for him to die yet. He was still of sound mind – at 94 – though his body had begun to fail. He was no longer able to go to a restaurant to eat dinner – one of our favourite activities. Eventually he stopped having “cocktail hour” with me – the only one of his four daughters who enjoyed this ritual with him. Still, we could sit and watch television together – Who wants to be a millionaire? Golf and curling – things I relished with him and would not be caught watching otherwise. I clung to those shared rituals like a drowning woman. Indeed, most days I felt like I was drowning.

Anything was better than losing my father – this man of wisdom, of knowledge, of family history.

Like the families I meet each week at hospice, I knew all too well where this was leading – but the routines of caregiving, be they cooking or grocery shopping or making phone calls, can distract us however briefly from the ultimate point of this journey. The person we love is dying. The person we love will no longer be in our lives. The person we love will leave us – forever.

Somehow we have to balance that knowledge along with carrying on the activities of caregiving. In fact, those activities are essential to providing care and maintaining our own sanity.

Soon enough we will experience what one family recently termed a “wake-up call.” When I asked him what he meant, he spoke eloquently about the impact that another patient’s death had had on him. “This is why we’re here,” he said. Not that he had really forgotten. Not that any of us is likely to forget for long.

And so we do our best, showing up as our best selves. This is what I hope I did for my father. And it is what I see families doing, week after week, at the hospice where I volunteer.

 

 

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