The other day, I got a call from a dear friend who was feeling broken hearted. She’d heard that a teenaged boy who’d spent his whole life struggling with neuroblastoma had finally succumbed to his cancer. This friend’s granddaughter had been diagnosed several years ago with an uncommon cancer, most frequently diagnosed in adult males. She was treated and has been in remission for several years. She, and the boy who died, had crossed paths through a community of parents whose children have life threatening illnesses. The families help support each other and are active in trying to help their kids experience enriched lives as they proceed through their grim treatments. Losing one child is a loss for all and a reminder of the fragility of life for everyone in the support group. The potential for living the same future death is never far from anyone’s minds.
My friend called me because she knows I’m experienced with the ups and downs of being with a loved one whose cancer ebbed and flowed, living from scan to scan, wondering always when the next doctor’s appointment would bring good news or bad. Living in a state of hyper-awareness is hard to describe. The edges of life have an eerie textural glow, as if they’re old celluloid movies which look unusually bright, but could suddenly ripple away and burn, erasing all images. No fabulous technicians are working in an archive to restore and preserve the one and only copy of the person you love.
I tried to console her with my limited means of coping. I am not religious. I don’t believe in an afterlife, a heaven, or a better place than the world I occupy. I’ve always thought that a belief system like that would be an easier option than mine, one that could make the empty spaces feel less lonely. But I don’t. That route doesn’t work for me. I have lots of questions about what happens to the energy of a person who dies. What happens to their wavelengths that bounce into space, wavelengths that are now considered to be scientific realities? What’s a parallel universe? Why do people feel they’ve been visited by those who are no longer here? I imagine I will ponder those ideas for as long as I can think. I have no notion what answers may be discovered in what remains of my own life. These are my private, personal intellectual meanderings. But my practical side is where I turn when confronted by the sadness of a friend who mourns a dead child and who fears for her own granddaughter and what may come down the road. I’ve figured out some approaches to the fear and the sadness. So I share what works for me.
When I realized the limitations of what I could know in the future and what I could do beyond the present, I made some adjustments that help me. I know I can’t go back and have a redo of anything.I need to be alive in the moment, as often as is humanly possible. I can’t stop the inevitability of death, for myself, for anyone. So while I am in the now, I try to squeeze the absolute best experience that I can make out of even the smallest daily events. I told my friend that whatever she can give her granddaughter to enrich her current life is the best that she can do for her. That can range from sharing a sweet treat to a hug to a special trip that will make unforgettable memories. Do it today. And don’t waste time in anticipatory grief which is a monster.
When my husband was well, we squeezed little bits of magic into every day and night. Although nothing can fill the space left by his absence, I am comforted to know that while he was here, our awareness of the significance of “now” was a daily imperative. And there is great comfort in knowing that you did your very best at living under the constant presence of death.
Situations like the one of the little boy always remind me that my life isn’t tragic. Rather, it’s what average people can expect at some point in time. Tragedies are what happen to little kids who haven’t had the opportunity to experience the richness of life. Tragedies are the people who live in the wrong place, caught between political power struggles that can snuff them out in an instant. Tragedies are having to live starving, physically, emotionally and intellectually, accidents of genetics or circumstance. As I frequently remind myself, and anyone I can get to hear me, perspective is everything. That leads me to my current processing.
When I was growing up, I didn’t like math much. After elementary school, algebra, geometry, trigonometry and beyond were not high on my list of pleasures. But oddly enough, my adult work life took me to a place where every day, I conquered what were the daunting mysteries that befuddled and frustrated me as a kid. And now, I find living by the numbers to be my most helpful skill in guiding myself through the challenges of my unanticipated widowhood and grief. So here they are.
1) Today is the 406th day since Michael’s death. Somehow I’ve lived all those days when I wasn’t sure I could survive one. I still mostly feel and look like me, despite missing him constantly. I didn’t know I had 406 days left in me.
2) I started writing Michael letters about three weeks after he died. He was my best friend and confidante. Nothing felt real until I shared it with him. To date, I’ve written him 160 letters. For me, they’ve been marvelously cathartic. Some are whiny, some informative, some sexy, some pathetic and some angry. I highly recommend writing letters as a way of remembering your journey. At the end of my day, I feel relieved to pour my thoughts toward the person I most trusted in this world. I still wish he was here. But the notion of him with me is sustaining.
3) I’ve also written 149 personal journal entries. I’ve been writing in journals all my life so this is nothing new. But they’ll provide an invaluable resource for my children and grandchildren after I’m gone. I’m hoping that I’m answering all the questions they’ll have about the past. Personally, I don’t have those resources and have been left wondering about many parts of my family history for years. My mom and dad told me never to put anything in writing, always worried that somebody would get the goods on them and bring them harm. I blew off that idea long ago. My parents clearly weren’t historians.
4) Since last June, I’ve gone swimming 326 times. I feel like I’ve gotten physically stronger. I was pretty spent after my years of caregiving. It’s good to know that you can still make a kind of comeback after being driven into the ground at an older age. After my knee surgery who knows how I’ll be?
5) I’ll admit that I don’t have an accurate count of how many hours I’ve spent being with or talking with my children and grandchildren. But I can say that even when I’m exhausted and feeling like a hermit, I pull myself out of the fatigue and do it anyway. Time is moving fast and I can’t ever get back what’s behind me. Do it now.
6) I’ve played 9839 games of Words With Friends. I’ve tied in 24, lost 1202 and won the rest. I’m trying to keep my brain active. And I really love words.
7) My working hours in my garden average about 15 a week. I used to be able to crank out 8 hour days. Now my knees can’t keep up with my desire. But if I’m not working, I sit in the garden and watch the sky, the insects and the animals who share my habitat. Those are some of my favorite hours.
8) I read a book a minimum of one hour a day and usually more than that. For a long time during Michael’s illness, I had trouble concentrating on anything but articles and short blurbs. Books are a necessary component of my days. I’ve read 37 since Michael died. I’m working on upping that number. Reading the impossible news with astonishment every day has cut into my book time. Another challenge to becoming balanced.
9) I listen to music at least 2 hours a day in a variety of formats. Music nourishes my soul. I starve without it.
10) I’ve been to 32 movies in the theater since Michael died. I’m not sure how many I’ve watched at home. One day I’m going to try to make a list of all the movies I’ve seen in my life. I’m not sure I’ll have enough time to accomplish that.
11) I’ve been to two political demonstrations in the past year. I donate to two of my favorite organizations monthly and have made individual donations to worthy causes 13 times. I believe in staying politically active and as engaged as possible. I can’t get rolled over by the sideshow that is our current state of affairs. Doing my little piece is as necessary as breathing.
So those are some of the things I’ve kept track of since my world changed forever. Maybe it’s a bit compulsive. Maybe it’s weird. I don’t really care. I’m just finding my way through all the shocks I took in a six year period of time. WhenI my brother, my mother and my husband died. Plus I experienced an estrangement from my sister and the death of two dogs. I’m doing my best to manage. Feels like it was a lot. But I know that other people have gone through worse and infinitely more horrifying times.
The counting helps me. More importantly, what I’m counting helps me. I hope my efforts give someone else ideas about handling their burdens. One, two, three….
The other day, I got a call from a dear friend who was feeling broken hearted. She’d heard that a teenaged boy who’d spent his whole life struggling with neuroblastoma had finally succumbed to his cancer. This friend’s granddaughter had been diagnosed several years ago with an uncommon cancer, most frequently diagnosed in adult males. She was treated and has been in remission for several years. She, and the boy who died, had crossed paths through a community of parents whose children have life threatening illnesses. The families help support each other and are active in trying to help their kids experience enriched lives as they proceed through their grim treatments. Losing one child is a loss for all and a reminder of the fragility of life for everyone in the support group. The potential for living the same future death is never far from anyone’s minds.
My friend called me because she knows I’m experienced with the ups and downs of being with a loved one whose cancer ebbed and flowed, living from scan to scan, wondering always when the next doctor’s appointment would bring good news or bad. Living in a state of hyper-awareness is hard to describe. The edges of life have an eerie textural glow, as if they’re old celluloid movies which look unusually bright, but could suddenly ripple away and burn, erasing all images. No fabulous technicians are working in an archive to restore and preserve the one and only copy of the person you love.
I tried to console her with my limited means of coping. I am not religious. I don’t believe in an afterlife, a heaven, or a better place than the world I occupy. I’ve always thought that a belief system like that would be an easier option than mine, one that could make the empty spaces feel less lonely. But I don’t. That route doesn’t work for me. I have lots of questions about what happens to the energy of a person who dies. What happens to their wavelengths that bounce into space, wavelengths that are now considered to be scientific realities? What’s a parallel universe? Why do people feel they’ve been visited by those who are no longer here? I imagine I will ponder those ideas for as long as I can think. I have no notion what answers may be discovered in what remains of my own life. These are my private, personal intellectual meanderings. But my practical side is where I turn when confronted by the sadness of a friend who mourns a dead child and who fears for her own granddaughter and what may come down the road. I’ve figured out some approaches to the fear and the sadness. So I share what works for me.
