Tracing in the Grey

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Most of my life, I’ve lived by a conscious decision to be unaffected by weather. I never saw much point in allowing my mood to be altered by something so completely out of my control. And I’ve been lucky enough to adhere to this idea, day in, day out. Until this week.

Tuesday was the first day of the second session of the grief support group I fought to get started at our local cancer center. Not having a group there was such an egregious oversight to me. I needed help which wasn’t there.  I’m determined to keep it going so no one else has to feel that no place exists to share the grief that accompanies death, especially with others experiencing the same feelings.

But this group was very different from the first one. Everyone in the first one was a widow.  I felt a kinship with those people and our exchange was open and freewheeling despite the best efforts of the social worker to have us follow a syllabus of a sort – the ones that lay out the stages of grief in order, as if we all will follow the same path like good little grievers.

This time, everyone in the group had lost a child. One was a 24 year old son who’d died of a rare kidney cancer. He’s been gone 2 years, but his mom is stuck in grief as fresh as the day he died in her arms. Then there was the couple whose son was working hard on his organic farm when a tree suddenly toppled over and crushed him to death.

I instantly felt like an imposter. After we became parents Michael and I had countless conversations about the fear of losing a child. And that was a constant, that neither one of us thought anything could fell us except that.  And here I was with these people who looked ghostly and nakedly bereft. The new facilitator had her grief sheet with her and turned to the father of the son who died in the freak accident and asked him how he would describe loss. The man stared at her and said, “I have no idea what you’re talking about.” She could have been speaking in tongues for all he knew or cared.

I tried hard that day. I summoned all my internal resources to try to provide something meaningful to these people. I moved chairs to sit next to one woman and asked if I could just touch her hand as she vented. I felt so weighed down by their pain. I can’t deny my own, but still. I felt selfish and small even though I understand that I’m entitled to my pain.

When I left the group that day, I noticed the grey sky. It’s been grey and wet, icy and snowy, frigidly cold. So many people are sick with colds and flu and I, with my still dreadful sleeping habits, am digging deep and hoping my immune system will help me fend all that off, while I babysit for my sniffling, feverish grandchildren and watch my kids plow through their fatigue and aches. And then I realized I hated the grey weather. It feels like an iron yoke on my back and I want to push it away and feel sun and put my toes in the ocean where life will churn around my ankles. So strange to feel that sensation.

I have no idea how to adjust to this new feeling. Oddly, it makes me miss Michael more. He was the one who constantly moaned about winter and grey and cold, lying under piles of comforters and afghans on his side of the bed, while I never needed anything extra for warmth. While I couldn’t care less about what was going on outside aside from practical issues. I was always very busy and occupied inside. And despite this new external load, this awareness of the oppressive weather and atmosphere, I am internally occupied. I am quietly tracing the curve of his chin, the length of his fingers, the breadth of his shoulders inside myself, in this grey cloak. I’m doing my grief in the nether regions now, amidst the grey, foggy places that never meant much to me before. My new angle on the world. 

 

 

 

 

 

The Famous Red Notebook

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When Michael’s cancer invaded his brain in late 2016, and most especially after the effects of whole brain radiation, he lost his ability to deal with technology. No computer, no phone, no remote.  Television was confusing. Music was supplied by me-after years of constant tunes, he reached for nothing.  In addition, his memory was impaired.  All the humdrum daily events we take for granted vanished from our world. In the few weeks of semi-normal life that we squeezed out of his last days, the only significant routines were simple body maintenance, limited conversations and desperate hugs.

Frantic to keep him as engaged as possible, I started asking him questions that might stimulate other portions of his brain-my desperate effort to improve the quality of his life. Mine, too. Frequently these questions elicited a mysterious response – everything you want to know is in the red notebook. What the hell was the red notebook? To me it sounded like a figment of his imagination, a stuck place like a skip on an LP. I felt so desolate and empty. Void of the ability to make an impact, to provide meaning and depth in our shrinking interactions.

Until the day I found the said red notebook, squished in between his many folders and cookbooks in a basket on the floor, next to the spot where he always sat on the couch.  Sweet relief. It was chock full of ideas and lists, the outline for an autobiography and various chores to be done. Whenever later was. Coupled with what I found on his computer five months after his death, this was a unique look into the mind of this man I knew and loved so well. As he said so many times, he wasn’t done. Even though he faced down Merkel Cell every day for more than five years, there was humor and wit and plans for possible adventures. Ideas and designs and epitaphs. A notebook bursting with hope and desire for what he called “this glorious life.”A look into the most private labyrinths we all carry inside us. red was also his favorite color.

Using the autobiography as a guide, I decided to interview him to see what he could recall. To my amazement, the stories from sixty years ago and more came pouring out of him as I wrote frantically beside him. Too stunned to stop and find a recording device. Too afraid to stem the flow in case it disappeared. I’ll never understand why that storage bin was still accessible, but everything changed from  sharing those tales of the boy from long ago.

I’m now transcribing all those notes, with all his words, into pages that will be the companions for my kids and grandchildren and perhaps beyond all of them. My concept of immortality.

Photographs

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January 5, 2018

Last night, I was looking around my bedroom, my most favorite room in the house. Always the safe spot, the cushion of love, the untouchable cavern which kept the outside strife of the world at arm’s length. Our retreat from it all. 

Although my husband died in our home, this sense of security and sanctuary remains, leaked into the walls through almost 40 years of life here. Where the babies were made and grew up, bouncing on the bed with excitement, snuggling in when they were scared or lonely, a family bed that spanned three generations. The shelves with books and candles and artsy little pieces tumbled together. Dozens of photo albums. 

The room is full of photographs, black and white, color too. I see my grandmother, my parents, my sister, nieces and nephew. My children and their friends. And of course, the pets, dog after dog, who filled our lives and eventually broke our hearts as they went before us. 

And then there are the pictures of me and Michael. As individuals, as a pair, with the kids and the pets, inside and out, wintry and summery and everything that lies between. The homey ones and the magical vacations. So much wondrous joy.

And I realized that I’ll never have a new picture of Michael again. His history is played out and as I move forward, aging along with my children and their children, he is forever frozen in time. Why this was stunning, I truly cannot say, but it was. I felt a powerful wave of sadness, the tidal kind that makes you wonder if you’ll be able to stand up from the bed and step into the next room.

I am trying to puzzle my way through this particular sense of an emptier future, so different than missing flesh and body and sound. I am already missing the dream of us, shrinking some, wrinkling more, side by side, holding each other and all those we love, as we cross into our imagined old age. Still dressed like we were kids, listening to music, watching movies and maybe denying the physical changes and limits we were both accustomed to doing already. The missing pictures of future trips and life events. The photos which for me will always have an empty space by my side.

I never once thought about the photographs which will never exist. I’m grateful for the ones I have. I can choose the part of life in which we were our most beautiful vibrant selves and soak in those memories. Michael will always have seen me full of our love and joy, forever young or at least younger. I think I’ll do the same with him and revel in his strength and humor and consistency that is stacked on my shelves, the outside and inside ones.

And I will forever hate fucking cancer, as my friend Cynthia and I always say. Fucking cancer.

 

 

This Madness.

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January 3, 2018

In such a brief time the culture has devolved into a mad carnival of the absurd. The news cycle spins so quickly, I must look away to stabilize my mind and wonder that there are those reveling in the madness that flashes in milibytes across their screens.
New weather names describe bomb-like storms with winds and snows that mimic nuclear devastation. Meanwhile, the recovery from fall storms and fires creeps along at a glacial pace and the suffering victims slide further to the bottom of the pile.
In the midst of this daze-inducing chaos, I try to figure out my new life.
I still sleep on my side of the bed. I am suddenly stunned by the knowledge that I’ll never have a new photo of my husband. He slipped away while Comey was fired, amidst absurd executive orders with a wild man displaying his signature like a five year old.
What steps should I be taking while the world quakes in mad eruptions every day? What can I do that matters?
I take a deep breath and reach for my self-taught lessons. Spin in circles with arms stretched wide and whatever you can touch is something you can try to fix. The big picture is too big. Remember my 5 year rule-I don’t recall exactly what happened five years ago today and I won’t remember exactly what happened 5 years from now. The sharp lines and feelings will hopefully blur into a less painful memory.
I am trying to push forward. I will forever wonder whether learning to live without my life’s partner would have been easier if only Trump had never been elected.
On to other thoughts tomorrow.

Whose Grief is It Anyway?

 

I am a really lucky person. I lived with someone who never asked me to be anyone but myself. The joy of reaching the space of true authenticity is hard to describe. Being able to always be yourself has a lightness to it. A sense of freedom. Arriving in that spot which enables you to say what you think, feel what you feel and be who are, regardless of circumstance, is my idea of having truly self-actualized. I’ve treasure the luxury of being genuine.

That authenticity has been challenged in the eight plus months I’ve lived since Michael died. The me that I am has created many odd moments as I work through my emotions. I’ve had some tough issues with people regarding the way they’ve handled my expression of grief.

Mostly, they don’t know that. Our culture does a wretched job with death and grief. There are lots of books out there which describe the steps everyone must take to handle what is the inevitable for all of us. There are timetables. The first and most popular one seems to be that you’re not supposed to do anything for a year after an important death. Otherwise you might regret your actions. But at one year, you have permission to act. Where’s the magic button for that change, I wonder? Can’t find it on my phone or computer.

Then there are the platitudes. “He’s in a better place.” “I’m sorry for your loss.” “It’s still too soon, but in time, you”ll believe you’re ready for a new companion.” Really??? Where’s the better place? I’d like to pay a visit. I haven’t lost Michael-I know I didn’t leave him at the mall. Why on earth would you think I want a new companion? I have a dog.

Let’s not forget the people who make you feel like a leper. They run the other way and say nothing. Your presence reminds them of the fragility of life. The ones who ignore you because they don’t know what to say. Saying I don’t know what to say isn’t on their radar. 

When I speak to people, I have often felt a recoiling.  If my words don’t match the common perceptions of what this pain is, people pull back. At a time when you feel most isolated, there’s a sense that if your truth makes someone uncomfortable, you should be quiet or agree with a thought you truly don’t believe. So you feel more alone than ever. And irritated that you’re the one who needs to fill someone else’s emotional gaps

So here are a few ideas. The first is to try to simply listen. If you aren’t asked for an opinion or suggestion, don’t give one. We are all so different. What you hope might sound healing may have the opposite effect. Quell your internal noise and hear. Often, all that is required is a simple I’m sorry. Or perhaps a friendly pat or a briefly held hand. A hug. No one can change the course of another person’s journey. Don’t try unless you’re asked for assistance. If what you hear sounds disturbing, unsettled or wrong to you, just let it be. Most importantly, don’t argue or try to convince a grieving person that you have The Answer. You don’t. Except what you decide for yourself. And don’t be afraid to feel helpless.  Everyone feels somewhat helpless in the face of another’s pain. But you can still bring a little warmth and solace into the impossible. Small moments count. Being marginalized or unheard hurts.

I’m happy to be able to purge myself of these thoughts. I hope you find them useful as you move through your own unexpected circumstances. I want to be helpful as well. Thanks for the listening.

 

Quote of the day: Never let your sense of morals get in the way of doing what’s right. Isaac Asimov

On this day in history: January 2, 1788 – Georgia becomes the 4th state to ratify the United States Constitution.

 

Hello friends,
On this first day of 2018, I step off into the virtual world to share my thoughts and ideas with many of you who joined me on the journey through my husband’s rare cancer, Merkel Cell carcinoma. He lived more than 5 years and during that time, I learned how much a person can stretch and grow in unexpected ways. I learned that developing a community of supporters is essential in maintaining the strength to be an advocate. I learned that the once unimaginable world of science could be conquered by a person who loves literature and history. I learned that being honest opens the door for surprising experiences with a multitude of people in widely differing situations. I learned that ageism is a useless artifact of modern life.

I have a wide range of interests. Foremost is my desire to be a resource for people who are trying to navigate the medical universe, either as a patient or an advocate. But I’m also keenly interested in current events, nature, literature, movies, ramblings, laughter and grief. I’m up for following lots of threads and have no idea what I’m likely to share on any given day. I guess I’m a peculiar cross between activist and dilettante. I guess we’ll see how things shake out.

It’ll take me a little while to get used to this format I chose. so bear with me. I’ve jumped off this cliff with no clear idea in my mind, but I believe it will evolve as most of life does, with unpredictable twists and little-imagined directions. Best to do it now while my brain is still functional. And by the way, my blog’s name comes from my love of music and the beauty of the rocks that grace this planet.

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