On being cancer free in a pandemic

26 years ago yesterday I woke up at 4:30 a.m., put on my rattiest pair of jeans, and went to a specialty hospital to have surgery. I had a mass in the orbit of my left eye. I had been assured it was likely benign, but they couldn't confirm until it was removed. The procedure for a biopsy was the same as for excision, so there was no reason to not just have it taken out. Besides, the mass was growing pretty quickly and I was starting to look like Marty Feldman's cousin, let alone having some unsettling visual problems, like partial blindness in my left eye and diplopia.

About 12 hours later I woke up in recovery, pushing the nurse away as she adjusted my oxygen mask. I looked like I'd been badly beaten, but was assured everything went well and I would heal quickly and easily. There had been some alarming moments in the surgery, but I was okay. That night in the hospital, a nurse named Steve? Bill? sat next to me and held my hand when I was afraid. I went home the next day.

A few days later I went back for a check-up and biopsy results. That was when the doctor told me that the mass wasn't benign but a fairly rare and (at the time) not well understood malignancy. Cancer. Long story short, there was some rigamarole about next steps, but I was fine. I still am. Some good stories have come out of it and I've learned a few things.

A year later, 25 years ago, I threw a party, my re-birthday. I kept that party up for ten years then decided I'd had enough and didn't need to do it anymore. I would do it again in 10 years for my 20th re-birthday.

Twenty years later, April 18 was 21 days after Kevin died from cancer. I didn't throw a party.

In all honesty, now I don't really remember to notice the day for my own sake. I'm reminded by something about the Oklahoma City bombings, which occurred on April 19, 1995 (remember when this kind of thing seemed impossible?) or, while I still lived in Boston by the Marathon or Patriots Day. If anything, when I did remember, it became another trigger for grief because I survived cancer and Kevin did not. Mostly it's just another day, which is probably good.

This year is different. It is, of course, different for all of us and in so many ways. Some of us are just learning about grief and trauma, others recognize some of it as a familiar ride. For all of us this is unprecedented.

I woke up yesterday not thinking at all about the date. Something was nibbling at me, something I should remember. At some point, I think while Charley and I were walking, I remembered. Oh. Right. Today I am cancer-free.

I'm not sure what the larger point is here, other than wanting to note it and recognize that against the greater backdrop of global grief and loss, it is both very small and not small at all. I keep thinking about A Blessing for the Wedding by Jane Hirschfield and Elizabeth Alexander's Praise Song for the Day, both poems about the ordinary-ness of the extraordinary and the extraordinary-ness of the ordinary.

Hirschfield reminds me that living and dying happen all the time, that there are unknown joys and tragedies every single moment of the world. So it is with my own cancer experience, with loving and losing Kevin, with loving and losing so many, with this moment when we are all suspended in time between life and death, staying home to stay safe or struggling to breathe.

Today when someone you love has died
     or someone you never met has died
Today when someone you love has been born
     or someone you will not meet has been born

Every single one of those moments matters whether or not they impact me directly.

It is Alexander who comforts me. I wish I could share her words with my 26 year old self, who was so very scared. I don't know if they would have helped then, or if they will help now, but

I know there's something better down the road.
We need to find a place where we are safe.
We walk into that which we cannot yet see.

Say it plain: that many have died for this day.
Sing the names of the dead who brought us here,
who laid the train tracks, raised the bridges, 

picked the cotton and the lettuce, built
brick by brick the glittering edifices
they would then keep clean and work inside of.

Praise song for struggle, praise song for the day.
Praise song for every hand-lettered sign, 
the figuring-it-out at kitchen tables.

Today I am still here, amidst the certainty of death and loss, praise and courage, the un-noticed moments that compose our lives. Today I am 26 years cancer-free, half my life passed ahead of that frozen moment. I did not know then what was to come, all of the love and fear and strangeness and wonder. I still don't know. None of us do. But here we are.

Be kind to yourself. Be kind to others. I love you all.
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(c)2019 Laura S. Packer

Throwing starfish and the necessity of barking

If you've been following me for any time, you know that part of my work in the world is reminding everyone to #barkagainstthedark. I've been posting barks on social media regularly since November 2016 and I continue to do so, even when it's really hard.

What is a bark? At its most basic, a #barkagainstthedark is a way to stand up to the grim moments and actions in the world. It's a way to say I am here. It's a way to build resilience and community and hope, even when things feel overwhelming and isolating and bleak. In action, barks can be something to make people laugh, a poem to make them think, a reminder of our better natures and the arc of history. Barks are whatever help us keep going and not give up. They are, I suppose, my own attempt to throw a starfish back into the ocean. It might not make a difference for everyone, but it might make a difference for someone.


We all feel down sometimes, so a bark is a reminder that no one is alone. Whether from mental health or societal forces, everyone has trouble remaining engaged and hopeful (at least I do, and I'm extrapolating from my own experience) so a bark is a voice in the darkness, a small light.

We live in extraordinarily challenging times. The current U.S. administration is racist, sexist, fear-mongering, and greedy. Their volume is overwhelming and their actions are devastating for untold numbers of people. That they are supported by our neighbors is heart-wrenching. Even when I try to remind myself that racist, sexist, fear-mongering, greedy behavior comes from a place of fear, I cannot help but become angry and disheartened. I bark to remind myself that I can do better. We can do better.

We will. It will take time. It may not happen in my lifetime, but we will.

Knowing it's a long game that may outlive me might make you wonder why I keep barking. I bark because if I stop I become complicit. I bark because I need to remind myself that I am not alone. I bark because the starfish story stops too soon. When I tell it, I end it with,

The man watched the boy pick up another starfish and throw it as far as he could into the waters. 

He saw the splash and imagined the creature's relief. 

He bent down, picked up another starfish, and threw.

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laurapacker.com Performance, coaching, keynotes, and more.
thinkstory.com Organizational storytelling, communications consulting, and more.
(c)2019 Laura S. Packer

You can't go home again

This past weekend I returned to Sharing the Fire for the first time since Kevin died. We were both deeply involved with this conference, and the thought of returning filled me with dread for quite a few years. I had tremendous trepidation about going back this year, but decided I may as well find out if I could.

It was both easier and harder than I anticipated, as so many things are.

On the one hand, it was wonderful seeing people I care about whom I haven't seen in years. I did a good job of planning for something that would be stressful so when it was, I had a safe place to hide and people who took care of me. I didn't have to bark at anyone, which was something I had genuine concern about since so many people say well-meaning things that are actually hurtful.

On the other it was yet another marker, another way of noting that Kevin has been gone for five years now, which seems so very long. It was another way of noting how much things change and how little they change. It was an enormous marker of how I have changed and not always in ways I would have hoped.

It was hard and good and hard. So it goes.

I expect I will return next year, now that I've managed it once. I don't expect that it will ever be easy.

My gratitude to all who helped me through. As it is with most things, I wouldn't have made it without you.

p.s. I posted a ghost story on patreon, one that is largely about Kevin. There is a video teaser here, and you can support me (and therefore have access to the story) here.
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(c)2018 Laura S. Packer

Creativity in times of stress: This is how it started video

I wrote last week about the power and frustration of everyday life when something hugely disruptive occurs. I wrote about it in the context of grief as well as in the current U.S. political climate.

As an artist, I have been somewhat stymied in the last few years. I'm working, I'm performing, but Kevin's death has changed the way my creative process functions. It is much harder. I feel as though I'm operating in a vacuum, that my greatest ally, co-creator and most constructive critic is no longer around. It feels this way because it's true. In the last year or so I've been slowly finding new ways to create new work, but it's hard.

The recent U.S. election and inauguration has added to my difficulty creating. I find myself questioning the worth and value of the art I make in this climate that feels so antithetical to what I do best. It feels the way it did in the first few months after his death when I felt alone and adrift, that my art could make no difference in the world. I question the value of the work, the thing that has shaped me and my life for years, and therefore my own value.

The answer, of course, is to keep working. To be silenced is to capitulate, to say that yes, the arts in general (and my art in particular) lacks relevance. I don't believe that, though some days it's hard to remember. I believe that now more than ever we need art; as sustenance, as distraction, as fuel for the hard work of creating change; as that necessary break that helps us remember the best of who we are and the possibilities of who we might become.

Part of my answer to the question of my own relevance is to make art that I find meaningful. Part of my answer is to help others find their own voices, to help create space where we all can be heard, to take that subversive step of believing that what we do and who we are still matters.

It's not easy. I am faltering every step of the way. But it's something. It helps me build connection, nourish others and myself, and find a way through in these challenging times.

What arts are nourishing you? What are you creating? How do you keep going? I'd love to know.

The following video was recorded in January of 2017 at the Atlantic City Story Slam. This story has changed some, but it's a start and sometimes letting the flawed process be visible is as important as anything else.



(c)2017 Laura S. Packer

The observer effect

I’ve been thinking about the observer effect lately, about how the act of observation changes things. I wrote earlier this week about how storytellers and other artists are also observers and recorders, which can make a difference in a dangerous world, but now I'm thinking about it on a more personal level. The observer effect has certainly been powerful for me; I am an observer, a keek, and I’m aware that being observed changes what I do, how I behave and how I respond. I think this is true for most of us, but it feels especially active in my life, as a performer and writer. My own observation of the world and of myself have changed who I am, how I understand the world and my place in it.

I started this blog in 2007 in conjunction with my first NaNoWriMo. I loved that experience of daily writing and wanted to continue developing better writing habits, but knew I wasn’t likely to do so without some kind of audience, some kind of observer effect. So I began to blog. I wrote in a blog hoping others might read what I was writing, so I would write more. I had no idea how important that decision would be. I thought I was just writing.

At first, this blog was an ongoing series of ruminations about the world, but I quickly began to write more specifically about storytelling. By having an assumed audience of readers I had someone I could muse to about storytelling and so began to develop more complex and evolved ideas about the role of storytelling in the world. I wouldn’t have done that without you, the readers, without the observer effect. It has been very important to me to find a way to delve into the deeper meaning of the art that defines my life. Being observed meant that I had to express my thoughts more clearly than I might have otherwise. Thank you.

As you know, in January of 2014 this blog became a companion piece to Kevin’s caringbridge site, a place where I could express some of my own feelings in the midst of his treatment for pancreatic cancer. Once he died this blog became a place where I could think aloud about my grief, where I knew I was not alone.

There are many things that can be said about public grieving. There are many things I could say about my public grieving. I’ve had people tell me I overshare, that I shouldn’t say such things, that I am making a spectacle of myself, that I will chase away my new love by writing about the old. My response is that it’s my choice, that we each have different needs when we grieve, no one is forced to read this blog anyway and he repeatedly assures me that this is not the case. I’ve also been told that the things I write express what the reader thought was inexpressible, that I have given voice to those who have lost their most precious person in the world. As I’ve begun to rebuild (I don’t think of it as healing or moving on, I am someone so different now) I’ve thought aloud about that process, too. Again, I’ve been told it’s too much and I’ve been told that I’ve given hope in the midst of despair. And none of it would have happened without the observer effect because I wouldn't have written in the first place.

All of this has occurred without any specific intention. Much of my grief has been deeply private, moments you will never see and experiences I don’t want to share. The public part of my grief started as a way to give voice to the unbearable and has continued as a way to understand the world I now live in. Every time someone responded to one of my grief posts I knew I was less alone. That helped immeasurably.

More times that I can count this blog and you, the readers, have saved my life. Thank you. I never expected that when I began it way back when. In the midst of the most difficult thing I have ever experienced, being observed meant I chose to continue.

Now, 9 years and some 796 entries later (which means very roughly 70,000 words) I find myself here. I am maintaining two blogs (this one and my organizational storytelling blog) which means three entries a week, and occasional posts in my food blog. I am forced to have good writing habits to maintain this level of content. I rarely have more than 150 readers for a given post, which is very few in the blogosphere, but I continue.

I continue because the observer effect has made me a better writer. Knowing someone will read what I write makes me take more time, put more thought into it and craft it more than I might otherwise. The observer effect means I know I’m not alone. At least a few people read each post, even if it may not be as many as I might like. Knowing that I have shared my thoughts with someone has kept me going through some very dark nights. The observer effect has made me a better person. It means that just maybe something I’ve said has helped someone. And that’s the best part of all.

This is the last 2016 post in True Stories, Honest Lies; I’m considering what I want to do with this blog in the coming years. I hope to have more readers. More than that, I hope to continue this experiment with the power of an observed life, written.

I’d love to know about the observer effect in your own life and, more than that, I need to thank you. Your presence on this journey, even if you just stopped by once, has changed me. You’ve made me a better writer, a clearer thinker, and you’ve kept me going through tough times.

You never know what kind of impact you’ll have on someone. I hope some of what I’ve written has helped you. Thank you for keeping an eye on me, and I look forward to continuing to observe the world with you in the coming year.

Love,
Laura

(c)2016 Laura S. Packer

Lenses

Image courtesy of wikimedia

I sometimes think about the events in my life as a series of lenses. First I had the lens of childhood, when I was protected and relatively innocent. I saw the world as my playground, a safe place. Then I added on the lenses of school and my growing understanding that others had lenses too, and that theirs were as valid as mine (hard as that is to believe sometimes). From there came lenses that included my political beliefs, ways of interacting with people based on my experience and so on. Some lenses stuck, others were dropped or altered. They accumulated, each one altering how I could see, making things bigger or smaller, sharper or blurred.

I found that those lenses altered how I see the world. You know how it is, you wear glasses for long enough and your eyes change to adapt to them. When you take the glasses off the world seems more unclear than ever.

I never expected the tinted lens of loss, the dimming lens of acute grief and the permanent alteration those lenses have caused in my sight. Once those were installed I never expected the lens of hope or love to return to clear my view. But they have.

If you've never worn these particular lenses, don't worry, you will. And you can choose now and again to try them on. It's important to see the world through others' eyes. I'll loan you mine if you let me look through yours.

We are all products of our experience. Those of us who have experienced significant loss and grief will never see the world without that tinge, but we learn to adapt. We learn to see the beauty of the world through these lenses because we see with more clarity. The sparkle of light on the water is more precious than ever, because we know our lost ones saw it too. It is more joyful than before because it contains all the love we felt for them and the joy we feel when we share it with someone new. It may be blurred now, tears creating their own lens across our eyes, but the aggregate view, lens upon lens upon lens, is one that allows us to see the world with more compassion, more gentleness, more ability to see the preciousness in each moment. All of this depends on our willingness to look through these lenses and not deny them, but oh, the world is still there. Beautiful and painful and sparkling.

(c)2016 Laura S. Packer