Reading, How to

After food, and sex, and occasionally, sleep, the deepest and most sustaining pleasure of my life has been reading, reading stories.

For the past few years, since chemotherapy and radiation treatment for Stage 3 endometrial cancer, I have read very little. Oh, I read online, in short bursts of 20 minutes or so, and most days I read the NYTimes in paper form, but my Goodreads page is looking pretty thin these days. I am wrestling with why.

My hands hurt. I have peripheral neuropathy in my hands and feet from chemo. They are tingly all the time, and sometimes I get sharp, shooting pains in my hands that startle me. I also have arthritis in several fingers, and those joints are swollen and often painful. It can be hard to hold a book, and sometimes even holding Teacup, my trusty iPad Mini, hurts my hands. The touch of plastic or metal feels unpleasant against my skin. Teacup has a beautiful leather cover, but that makes it heavy to hold.

My eyes hurt. I have macular edema in one eye, and many floaters like a spiderweb across my vision. I have had cataract surgery and have reading glasses, but my eyes give me a hard time anyway. Sometimes my shoulders ache from the tension that builds up around my eyes from watching or sitting too long. What constitutes too long varies widely.

I have very little concentration. That started with the infamous “chemo brain” and continued with the beta blockers I take for high blood pressure. Since my dosage has been reduced I feel once again like I might be able to focus on a whole story, but while it’s better it isn’t good.

I confess I loathe audiobooks. The sensation of being read to is a sweet one, but I can’t do anything else while I am listening. I get antsy (and uncomfortable) sitting still. It’s hard to concentrate on them, too.

There is so little energy. I have to carefully distribute what I have each day, and reading takes a chunk out of it as does pretty much every single daily activity. I miss the stories. I miss the books I continue to buy but have not started yet, and the books I have started and haven’t gotten past a chapter or two.

I don’t feel cozy anywhere. The easiest place to read a print book is at the dining room table, which is not where I want to be unless I am eating. My rocking chairs are as comfy as I can get sitting down, but it’s hard to hold a book in any format for a sustained period.

Then, sometimes I think it’s just wrestling with the idea of it. I have been reading and teaching and reviewing all of my adult life. Books were my jam, as the younger folk say. The person who did all of that, who had long hair and could walk for miles and navigated her city as if it were her private domain no longer exists. The person who is now, who moves with a cane and has a cloud of short silver hair, that person misses stories. I have not yet wrestled my way back to them.


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Hair story the last, probably

Since I was 14 years old, I had long hair, often nearly to my waist. I loved it. I was vain about it. It was lush and wavy and deep chestnut brown. I thought it was my best feature. In my late 50s and 60s, it turned grey, then silver. I liked that, too. I loved being a woman of a certain age with long silver hair.
When I was diagnosed with cancer in 2014, I had to have my hair cut. It was one of the hardest things I have ever done.
Cancer breaks you. How you heal at the broken places is different for everyone. In my case, every single activity, every single thing I was and did, changed utterly. However, I thought I would grow my hair back. I knew it might not work, but I thought it was worth a try. So I did.
What grew back, however, was not my old, cherished hair. It was thin, and brittle, and didn’t wave or curl much once it was past my shoulders. It wouldn’t stay pinned up, and it hurt when I tried.
Last week, I accepted that I was no longer that woman with long hair. The wonderful hairdresser who cut my hair before chemo cut it today. Now it’s fluffy and I think it will curl more. It is, as Howl said of Sophie, the color of starlight.
I am not the person I was. But here I am.

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HAIR: A Story

This is a series of short entries about my relationship to my hair. They take place over several years, so there is some repetition. They include a bit about cancer treatment.

25 March 2009 “Gimme a head with hair, long beautiful hair…”

The last time I had short hair I was ten years old. I hated it. I vowed I would grow my hair long, and I did. I had, for a few years, the longest hair in my high school.
I was a blonde child, but my hair was chestnut brown by then, fairly thick and somewhat wavy. I loved having long hair. It not only seemed a badge of the 1960s (as indeed it was) but part of my whole and entire self.
People told me I would need to cut it, once I had a child (no, I didn’t). I did wear it up, in many guises, most of the time, through my professional career. I found a NYC hairdresser, George Michael/Madora, that knew how to cut and to treat long hair. I bought lovely hair pins whenever I could.
My hair is no longer chestnut, it’s silvery. I like to think of it as Howl said to Sophie in the film Howl’s Moving Castle as “the color of starlight” but the truth is, it’s grey. It is not so thick as it was, nor as wavy, and it does not behave as it used to. A family member used to say, “your hair can only be mentored, it can’t be managed” and that is more true than ever. Yesterday I went out with two pretty silver combs in my hair and a small rhinestone rose barrette. By the time I came out of MetroNorth and walked six blocks, both combs and barrette had completely fallen out of my hair (but I retrieved them).
I met TheInfomancer for dinner and music and couldn’t decide if I looked like a spirited sixty-something year old with long shining hair or a sloppy 61-year old with no grooming or style.
I love my hair. I wish I could make it do what I want, or understand what it wants. I can’t imagine cutting it though. It would be like severing a piece of my own self.

6 May 2015 A Year Ago

The first week of May 2014 saw me having my long hair cut for the first time in about 50 years, and my first round of chemotherapy. It’s a year later. My hands and feet still suffer the after-effects of that first chemo drug (which was changed as soon as the symptoms appeared). I had several haircuts since that first one. I never quite lost all my hair during chemo, and it started to grow back with gusto around Thanksgiving.
I long for my hair to grow back. It is the only part of me that might possibly be restored to what it was before cancer.
This was a scary anniversary, but also a hopeful one. One month from today I will be 68 years old. I want to have energy and clarity of thought, and they are slow to return. Those things do appear some mornings, and I greet them with joy. I want them to stay.

Hair: an obsession, part 3a

I can feel the hair on the back of my neck.
This is amazing. From the time I was fourteen (over 50 years ago) I have had hair to the middle of my back and longer. I could always feel the hair on the back of my neck. I had my hair cut short, and shorter, and shortest last year, and lost most of it during chemotherapy, but now it is growing back vigorously, and I can feel it on the back of my neck.
This is weird, and strange, and wonderful.
Cancer, chemotherapy, radiation do things to one. What those things did in the most basic way is change or alter every single daily activity and habit. Every. single. one. When and how I shower, how I walk, using the toilet, intimacy, reading, getting dressed, preparing a meal. Things will not go back to the way they were. But it is possible, just possible, that I will have my long silver hair back again, the way it was. (It is growing back even whiter, and somewhat curlier, but the small bald spot I had before cancer is still there. That’s amazing in its way, too.)
This fills me with the possibility of joy.

15 October 2016 Hair Again

From the time I was 14 until May of 2014, I had long hair, nearly to my waist. It was my signature, the way I described myself to people who had not seen me: “small, round, pink, long hair.” In May 2014, just before I started chemotherapy, I had my hair cut short. (I had it cut three more times. The last time it was about an inch long all over.) I saved the hair is a silk bag and I put my many (many!) hairpins and ornaments in two boxes at the very back of my closet.

About six months ago I pulled out a few barrettes that I thought I might be able to wear now. A few silk scrunchies. A clip or two. That was ok. I could cope. I could use them.

Today my hair reaches my shoulders. Growing my hair back is a mission, a goal, a deep-seated desire. It is the only part of my pre-cancer life that I can actually get back. Everything else has changed. Everything.

I tried going back in that box at the back of my closet this afternoon. I took out a few more hair ornaments and then I had to stop. I was so shaken by this. All those pretty things were part of a life I can barely imagine any more. But. However. I am going to reclaim each of those pins and barrettes and clips. Those I can get back. And I will. An awful lot is lost, but some things can be found again.

2 February 2017 Hair again and again

My hair had been long since I was about fourteen. Then I got cancer, and had it all cut off before I lost it. I did lose most of it.
Cancer takes a lot out of you, changes your body and your spirit. Almost three years after my first surgery, I know that nothing will be the same ever again. Except, I thought, my hair. I could grow my hair back.
When my hair first came back, it was white, and curly. That was fun. It has been growing pretty fast. That was fun too. I had a bald spot even before cancer treatment, and I still do. Now it’s bigger. As my hair get longer, it gets straighter, still with a wave, but not the curls of before. That’s only to be expected. But unfortunately it is also thinner and more fragile: no doubt partly due to age, but certainly due in part to what it, and I, have been through.
So now my hair is silver rather than snowy white, kind of stringy and flyaway. It does not behave very well, and it strongly resists being pinned up or tied back in any way.
Damn. I want to have long hair again. I want it to be pretty.

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a joy from Twitter


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A Rose No More

GirasoleAzzurra/The LadyHawk
16 June 2013 @ 03:34 pm
We moved to the house I grew up in when I was six and my twin brothers were three, in the autumn of  1953, I think. One wall of our property was the double apartment building next door, upon which grew a large climbing rose. It bloomed only once each year, in early June, in time for my birthday.

How I loved that rose. It was strong and tenacious and had huge wicked thorns. The flowers were pale pink in bud and almost white when fully opened, and they smelled like heaven: a very light, pure rose scent that no soap or cologne ever matched. It was my rose.

We moved back into the house I grew up in three weeks before my father’s death, and the rose flourished. Every so often it would bloom early if we had a warm spring, or late if we didn’t, but generally it was as regular as the date of my birth. Twenty years and more ago, when we moved to our current house, I took two cuttings from that rose, and willed them to grow.

And they did. Our home had a small arbor, just made for the rose, I thought, and I anxiously waited several years while the rose established itself and began climbing. I also planted a cutting by the front door, with a small trellis for it. After awhile, it grew, too, both blooming in sync with my birthday and each other.

The arbor rose is a wild thing. It grows like mad, blooms profusely, and has twined itself in and around the arbor. The front door rose, however, while it grew in much the same pattern, tended to reach out to grab the delivery folk, or our hair, or to whack us across the cheek at odd moments.

It was time for it to go. The gardener of our household, who will do most anything I ask, would not touch the rose. It attacks him mercilessly. So I did it. I covered my hair and wore long sleeves and my leather work gloves, which are tiny because my hands are tiny. I spoke to the rose respectfully with each branch I cut away. I thanked the rose for being with me, I blessed it root and branch and thorn and flower, and reminded it that its greater sister still lived on in gay profusion. It was the work of an hour, until I had cut it down to the ground and made a box of cuttings that would not injure the garbage haulers who would take it away. Only one thorn penetrated those work gloves, when I grabbed at a thick branch that was falling out of reach.

I have a thing for roses. I tend to gravitate to rose patterns in fabric and leather and art. I call my iPad Rose. I love the word, noun and verb. I am grateful for this essay, the last gift of the front door rose.

I offer you a picture of the rose arbor today, and one of the front door rose taken a few years ago before it began menacing passersby.

Happy Fathers Day to all.


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Georgia O’Keeffe

GirasoleAzzurra/The LadyHawk
07 September 2013 @ 10:42 am
We took two days to go upstate, to see a collection of 32 paintings by Georgia O’Keeffe in a small museum in Glens Falls, NY. The family of Alfred Steiglitz, whom O’Keeffe married, had an estate near Lake George, and they spent summers there for a time. Georgia painted there, some small, abstract, exquisite canvases, many of which I had not seen before. The Hyde Collection gathered them from many places, and it was truly wonderful to see rooms full of them.

She is one of the great abstract painters of the 20th century. Her work is extraordinarily controlled, the nuances of color minute and perfect. Her paintings of Jack-in-the-Pulpit, seen side by side, are monumental and almost hypnotic. I can look at her paintings for a very long time. They are intellectually engaging and emotionally soothing (most of the time). The blue Lake George on the exhibition poster is beautiful: small (most of these paintings are small), full of light that one can almost swear keeps changing, like sunlight on water.

I had never seen Lake George before, nor been to Saratoga Springs, where we spent a few happy hours walking around. But it was O’Keeffe I wanted, and it was a great gift.

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Farewell, my linen

23 August 2014 @ 06:55 pm
I wrote this in October 2012, and unaccountably did not post it.

Farewell, my linen
In the late 1980’s, I was a senior/executive editor at a professional/trade magazine. A friend and I were known by our family as “the fashion group.” I had achieved a personal goal of owning enough silk blouses to wear a different one to work every day for two weeks.
I also loved linen. I bought a luscious linen shirt from the elegant Paul Stuart. It was simply tailored, a heavyweight Irish linen the rich color of double cream. It fit me perfectly. It did have to be ironed, but I sent it out for a time. A long time.
Time passed. I moved on to an editorship. It was the best job, ever. The magazine closed, and in 1997 I began working from home. A lot of the silk blouses found other venues.
The linen, however, I discovered looked just as good and felt just as comfortable with jeans. I also discovered that if washed in cold water and hung in the sun to dry, it was not terribly wrinkly. In fact, with jeans, it made quite a nice hipster look. It was one of my favorite things to wear. For years. Even after a spot or two of tea took up residence below a button and would not come out.
Before Hurricane Sandy, I did laundry. When I went to hang up the linen, I discovered that blouse had begun to shred, all at once and nothing first, not along its solid seams but in the middle of the fabric.
Reader, I cut off the back panel and am thinking of turning it into a handkerchief. It is still a beautiful weave and a beautiful color. I have loved it now for nearly twenty years. There is just enough of it to make a story.

Postscript: Via Etsy, I had a craftsperson make me a case for TwinkleTwinkle, my iPad Mini. I sent her some Liberty Tana Lawn, and a piece of that linen to line it with. Here it is: TwinkeTwinklecase

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