The Light is Everything

“Still, what I want in my life
is to be willing
to be dazzled—
to cast aside the weight of facts

and maybe even
to float a little
above this difficult world.
I want to believe I am looking

into the white fire of a great mystery.
I want to believe that the imperfections are nothing—
that the light is everything—that it is more than the sum
of each flawed blossom rising and falling. And I do.”

― Mary Oliver, House of Light

Last year was a hard year. At this time a year ago, there were a couple of bombs about to go off in my personal life. One was that my elderly and much beloved cat, Fiona, was dying of cancer, but I didn’t know it yet. The other was that I was rapidly developing symptoms that, being a physical therapist, I would consider and reconsider, and finally realize I had to do something about or face disability. I variously wondered if I were developing a neuromuscular disorder, like multiple sclerosis, or if the neuropathy in both hands, the eroding balance, and the overall muscle weakness were the result of something more mechanical, but equally alarming, like a pinched nerve from a herniated disk or arthritis in my spine.

By the end of January, after three weeks of frustrating, apathetic vet care that caused Fiona — and me — a lot of needless suffering, I took her to a compassionate vet hospital where my sweet girl died of bowel cancer at the age of fifteen. And for the first time in thirty-five years, I had no pets in the house. A few weeks later, I adopted two feral female cats that had been separately rescued and brought to a local shelter, where they had languished for several months, waiting for some crazy human to take a chance on them. Not long after that, I had an MRI which showed that my spinal cord was being compressed by three bulging disks in my neck, and I needed surgery urgently. I went on leave from work in mid-April, had surgery, and did not return to work until late June. I had side effects from the mechanics of surgery for months — still do, in fact — but I could walk again without a cane, hold a pen and use a keyboard, feel my patients’ pulses with my fingertips, and do my job.

Meanwhile, in the online breast cancer community, we were losing people. Nothing new there, sad to say, but we were losing ass-kicking, brilliant, well-known and much-loved advocates and activists. People like Lori Marx-Rubiner, a long-time advocate and blogger whom I’d finally met in November of 2016 at a conference on MBC. Like Beth Caldwell, an attorney, activist and co-founder of MetUp. One of those we lost was my friend Susan Hamson, aka Scorchy Barrington, known to many from her blog, The Sarcastic Boob. Susan had been dying by inches of metastatic breast cancer herself for much of the time I’d known her, but especially in 2017, she was teetering on the edge, alternately in a hospice facility and in an acute care hospital. Not long after I was finally returning to work, Susan was beginning to lose the ability to communicate. Less than five months later, on November 14, 2017, she died.

I still cannot type about, or talk about, or think about her death at any length without feeling completely gutted. Many of you know what it is like to form a heartfelt, mutual bond with a sister in our cyber community that extends into all forms of communication. Many of you also know what it’s like to finally meet one of these precious friends in person. In October of 2016, I not only got to meet her, but I got to have her as a guest for a three-day weekend at my home, being snuggled by dear Fiona, who knew a cat lover when she met one, and who kept finagling ways to get the three of us in close proximity all weekend. I had tried to talk Susan into letting me take the train to visit her instead that weekend, but I think she knew it was the last time she would be physically able to attempt such a thing. And I’m a clinician, and I live down the street from the hospital system that employs me, and I knew if something dire happened, I could look after her. So, she came, by Amtrak, from NYC, to the charming, late-Victorian train station ten minutes from my home in southern New England. It was lovely, and I will always cherish the memory of that visit. But it makes my grief all the worse. She deserves, and will get, a post from me that is devoted solely to her, but not just now, not just yet.

Then there is the world, this country, and its politics. There is the sobering awareness of the scale of sexism and misogyny we’ve all experienced, an awareness brought about by the #MeToo movement. There are still and ever mass shootings. There have been ungodly natural disasters that have destroyed swaths of America by hurricanes, fires, blizzards, you name it. The drinking water crisis in Flint, Michigan is still unresolved. All of these things have affected the lives of countless individuals, changing them forever. One of my friends and colleagues was hit last year by a drunk driver while she herself was driving to visit a patient. She lived, but she has been unable to work since. And for me, there is the reality of working in home health care, and visiting people who are disabled or sick or old or poor, or all of the above. And of being astounded at how utterly ignorant, how lacking in any sort of compassion, that dozens of our national elected and appointed so-called public servants apparently are toward the reality of the people I treat every day. I’ve had to learn to ignore a lot, or limit my exposure to a lot, else I could not get out of bed in the morning.

One thing I’ve discovered though is that, miraculously, nine years after I was diagnosed, the personal aftermath of my own breast cancer and its treatment doesn’t bother me much these days. Sure, any year now, I could have a recurrence. But I don’t seem to live in the “could” of it anymore. The possible seems to have been shaken right out of me by the actual. A year ago, I was on the road to being permanently disabled by something that wasn’t cancer. Nothing like perspective. After the past year in particular, you can scarcely escape the awareness that there is a whole lot of other shit out there that can destroy life as you know it.

So, at the beginning of this new year, while I dig out of the large pile of snow Mother Nature just dumped on us here in New England, I want to thank my real-world and virtual-world friends, and my blog readers, for being there, and for helping to leaven the heart-breaking parts of the actual with the sheer vitality of your daily existence. I thank you all for being kind, and funny, and whip smart, and perceptive. I thank you for giving a shit about the world and about me, for laughing at my attempts at humor, and for cheering me on as I try to convince two feral cats that humans are indeed worth loving. I am so grateful to you and to the fur girls for helping me to discover that I can still be dazzled, and that I am still willing to be.

This entry was written by Kathi, posted on Saturday, January 06, 2018 at 06:01 pm, filed under Attitude, Health & Healthcare, Life & Mortality, Metastastatic Breast Cancer, My Work Life, Pain & Neuropathy and tagged , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

12 Responses to “The Light is Everything”

  1. So wonderful to find you blogging again – even though it’s heart-breaking reading your words. May this new year be kinder to us all. Much love – Marie xxx

  2. Thanks, Marie. I sure hope so. Love to you, too. xxoo

  3. Last year was brutal indeed. And we’re still dealing with some of that, politically speaking. I am hoping for some good changes this year. Like you, I haven’t been able to write about those who left us. It doesn’t get any easier. I am sorry you dealt with some health issues — wishing you a full recovery. I love your cat updates on Facebook. They sure are very lucky to have you.

    I am hoping for a kinder year for all of us. Stay well, my friend. And thank you as well for all your support. xoxo

  4. Thanks, Rebecca. It’s hard enough to deal with our personal stuff without this backdrop of political turmoil. I don’t think it’s helped. Lot of broken hearts among us this year. Hope your kitty adventure goes well, too. xoxo

  5. Love this post. This year has indeed been one of the toughest since my dx 9 years ago. And I still can’t bring myself to write about it. So glad you did! xx

  6. Thank you, Kimberly. It helps a lot to know I’m not the only who struggled to describe how I have felt. You get to the point that you don’t know what to say anymore. xoxo

  7. Hi Kathi,
    2017 was a rough year for many, that’s for sure. The thing is and as you know all too well, every year is a rough year in Cancer Land. We all know the losses will continue along with the heartache… I didn’t know Scorchy well, and I know her death affected you in a very profound way. I am very sorry you lost another dear friend. I miss her, too, and her insightful and witty writings. Write more about her when you feel ready. Your health issues must have been truly frightening; so glad you found some resolution, and I hope those lingering side effects from surgery get better or disappear over time. Good health is such a fragile thing. And your sweet Fiona – how sad that was. And the political scene, don’t get me started. Yikes. The year was brutal! In all the turmoil of 2017, I’m glad you found those two sweet kitties. I have loved reading about your adventures with all that and have thoroughly enjoyed the pics you shared. Onward we go into the New Year, right? We’ll keep putting one foot in front of the other. May 2018 be kind to you. May it be kind to us all, or at least kinder. Thank you for being out there, my friend. Thank you for being you. xoxo

  8. Thank you, Nancy. I feel so fortunate to be able to see past all the difficult things and find the blessings, too. One of them is your friendship. We never get to stop mourning in Cancer Land, do we? I thought my heart would never recover from losing Rach. And yet we go on. Somehow, we go on. xoxo

  9. Hi Kathi,

    I am so very sorry that you’ve had some serious health issues. You are right: there are other things besides cancer that can make one’s life miserable and harm us. The deaths from breast cancer are awful. I think it’s wonderful that Scorchy came to visit you; what a nice visit that must’ve been! I’m sorry about your dear Fiona. As you know I lost my Cosette to cancer in late 2016. It is so difficult — so very difficult — to lose our pets. And the sadness of losing those advocates we loved and the animals we loved and the health we’ve wanted take a deep toll. And our country is going down the shitter because of a psychopath and his cronies are at the helm. 2017 was a devastating year. I’m glad you posted this blog. We all care deeply about you.

  10. Thank you, dear Beth. You’ve been through so much yourself in the past year. I am glad you have sweet Ari. You are so lucky to have each other. 2017 was such a horror, it makes us hang onto the gems we have all the more. I hope 2018 is easier on us all. xoxo

  11. Despite the imperfections in our world, or even our own, you truly are a part of the light, Kathi. I enjoy your company, even if it’s contained online. Thank you for sharing your beautiful cats with us. It really helps to offset all the crap that’s out there. xo

  12. Thank you, Eileen. What a lovely thing to say. I’ve enjoyed knowing you, too, here in cyberspace. I think the fur girls have rescued me as much as I’ve rescued them. A little love goes a long way. As you well know, with your new grandson. <3

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