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The Most Important Thing I Learned This Year

31 Mar
When Annie and I had dinner at this restaurant, she spent half the time worrying that it didn't have enough business, because she always worried about other people.

When Annie and I had dinner at this restaurant, she spent half the time worrying that it didn’t have enough business, because she always worried about other people.

Today is my birthday, and in spite of the fact that I seem to be unable to string five words together lately, I have promised to write something of portent today on this most holy of occasions, or, as we call it in my family, “The Day Dad’s Butt was Sore.” It’s a long story.

 

There are many things that happen in a year. Even though it is arbitrary, events have a way of arranging themselves into a story, because humans have storytelling minds. It seems logical that I started at some middling point last year, had ups and downs and ended on a rising high. Early last year, my darling friend Evelyn got married in Phoenix and I was there with my husband, and that was a joy. There were many pleasures last year. But I also struggled with several painful flare-ups of the autoimmune disease that attacks my spine, and the crushing pain that continued for long periods demoralized me and wore me down. They made it hard for me to reach out and talk to friends, and I became isolated. There were troubles for people I loved that saddened me. And oh yeah, the 2016 election. Do I need to explain? And then I was rescued by a new medicine and began to feel life and hope pour into me again. My loved ones got happier. I ended the year with an amazing trip to Spain with my beautiful husband, and we only just got back Wednesday night. So the year ended gloriously.

 

But what I really wanted to write is the single most important thing I learned this year. I learned it the hard way. Two friends of mine, vibrant, powerful women younger than I am, died on the same cold day this winter. Annie lives in my town and our kids went to the same delightful woman’s house for after school daycare. Annie was warm and fierce and hilarious. She knew everybody and she would bring everyone together. Even though I could be rather shy and standoffish, she decided she was going to adopt me and make sure that I had a good social life whether I wanted to or not. She would call me up and say, “Alex, come over and watch me cook,” and I would. Because I really did enjoy her companionship, and I enjoyed everyone else she adopted and brought together, including, and especially, her two sisters, with whom she had an intensely close and dear relationship, even though she called one of her sisters “Knucklehead.” I had known her for more than a year as a formidable mom in a minivan when she accidentally let it slip that she was a Harvard educated lawyer. But actually, she brought that mom in a minivan quality to her lawyering—the care, the worrying, the schlepping, the getting every detail right. She was an amazing raconteur who would tell stories which would frequently shock me, and she and her sisters worked hard to build an extended family that encircled all of their children, the old people, the vulnerable people, and outsiders like me in its warmth. There was always food, conversation, and light where they were. And then she got cancer.

I took this picture of Jackie after our Fuck You Cancer lunch.

I took this picture of Jackie after our Fuck You Cancer lunch.

 

I also lost Jackie. She was another fierce person. She was a talented editor and writer who I’ve known for years since we worked at the same company. She also struggled with cancer for more than a decade. She had an incredible sense of pride and dignity in the face of her illness. She took care of her parents when they died of cancer, and she even had cancer when she was helping her mother. With the help of her friend Sue, she weathered endless rounds of chemo and the devastation of learning bad news again and again and again as her health slowly slid downward. But she retained her wit, her frank anger at the disease, and her caring connectedness to other people. A few years ago, when I was going through I period of serious depression, I went to her office—she had been on full disability but she fought to get off it and get a job again because that’s how she rolled—because we were going to have a pardon-the-expression “Fuck you cancer” lunch at Kelley and Ping, one of our favorite local spots in NYC. Although I was depressed and she had cancer, we just laughed and laughed all through that lunch. I asked her, because at this point, nothing was off the table, “So, when you get depressed, how do you get the energy to, you know, stay alive?” She thought for a moment. “I say to myself, I didn’t go through nine fucking rounds of chemo so I could kill myself.” And that sentence was so freaking badass that I said, “I am totally stealing that,” and we laughed again. But I wasn’t kidding. Through the gray days of that grim depression, I would actually mouth to myself “As Jackie said, ‘I didn’t go through nine fucking rounds of chemo so I could kill myself,’” until the day the fog finally lifted. Jackie was funny and wry and she didn’t forget other people. I was looking through my journals looking for stories about her after she died and suddenly I remembered—how could I forget? that she was the one who had gotten me not one but two different jobs after I left the company where we worked together. I know that she shared opportunities generously with other friends as well. And through her I made other friends. At her funeral, I realized how many faces I knew were connected to me through Jackie. We were a community of people all woven through with her fate, with her kindness and her thoughtfulness. I hadn’t seen her for the last year of her life. I was very lost in my illness and immobility, and didn’t know that time had run out. I was so sorry I had not been more present in the last year.

 

But I also felt a sense of joy when thought of both Annie and Jackie. At both funerals I saw how their lives had made a difference not just to me but to so many other people. They were permanently imprinted and changed by things Jackie and Annie had done and said. By their energy and love. I thought of the friendships I have had with these women, and with the other amazing and precious people I have had the privilege to know. I had had the chance to reconnect with Annie, and I was so happy to have seen her again. And I was relieved to see that I had written a long letter to Jackie a few months before her death, but I think she must have been too ill or busy to answer. So I felt happy I had at least reached out. Because that’s what both Annie and Jackie would do, again and again. They would reach out, and reconnect with me. So I wanted to be the kind of person they were. And I wanted to do it joyfully, not with shame.

 

So, this is what I learned. The most important thing I learned all year. If I have a friend who I’m thinking about, and I want to reconnect but feel embarrassed because I’ve put it off too long so I’m hesitating, just DO IT. Adults have complicated lives and they can’t always be there for you or you for them at the exact moment you want them. But that does not mean that there is not love and meaning in your relationship. Sickness made me an unreliable friend in some ways these past few years. But there are ways I can—that adults can—still be reliable, and that is by making the attempt to reconnect again and again, when you can. Thinking of a friend, sending them a small note, having a phone call—every single connection is a brick in the house you are building of your friendship together. Every contact made with affection and interest is precious.

 

As I approach this coming year, I feel as if I have Annie on one side and Jackie on the other, reminding me how the love of other people shapes and enriches life, and that time spent openheartedly appreciating those people, whenever possible, is one of the most valuable things I can do with the life that I possess. I wish that these two women were here. There is a hole in the world with them gone. But at least I can honor the piece of them that is still here living in me. So, thank you friends! Thank you everyone I love.

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135Journals Art Corner #49

8 Dec
Waiting Room, Beth. Art Project #49. From my journals. Alexandra Hanson-Harding

Waiting Room, Beth. Art Project #49. From my journals. Alexandra Hanson-Harding

135Journals Art Corner #48

7 Dec
Waiting Room, Albert. From my journals. Art Project #48. Alexandra Hanson-Harding

Waiting Room, Albert. From my journals. Art Project #48. Alexandra Hanson-Harding

135Journals Blog: The strangest thing happened to my fingers and toes when I fell asleep

3 Aug
If you look at the top joint of my pointer finger, you can see it curves to the left :((

If you look at the top joint of my pointer finger, you can see it curves to the left :((

I thought I was having a nightmare Thursday night. In the middle of the night, I had a disturbing feeling that somehow, in the middle of the night, the joints in my fingers and toes had started tingling. Weirder yet, I had the odd sensation of feeling as if some of my toes and fingers weren’t rubbing together right. It was very odd, but too complicated to figure out the meaning. I told my dreaming self, “That nonsense had better be gone by the time you wake up.”

At 6:30 a.m. I woke up for real. Thank god, I thought. I don’t need creepy dreams like that. It’s scary enough to have an inflammatory autoimmune disease (a form of spondyloarthropathy, similar to rheumatoid arthritis) that causes all kinds of strange symptoms such as random backaches and foot pains and weeks of draining fatigue that make it hard for me to do more than one activity a day—such as pick up more medicine at the drugstore—before I have to return to my Fainting Couch, shaky and weak.  It was challenging to adjust to giving myself two injections a week of strong drugs that lower my immune system so that it doesn’t spend all the time attacking itself (although it means that if I get a cold it could turn into pneumonia in a finger snap).

The hardest part is adjusting to being limited. To want to be fun and energetic, to do more things with my delightful, energetic husband, Brian, but just fall short. It’s hard to adjust to the fact that what I intend to do and what I can do are two different things.

Just to reassure myself, I held up my hand.

“Crap.”

Yeah. I wasn’t having a nightmare. My joints had swollen, shifting my bones, in my sleep.

I’ll remember that moment for a long time. The pallid early morning light coming through the beige curtain, the dark red wall, and in front of it my left pointer finger, curving to the left like a little scythe. Maybe not as dramatically. Okay, maybe the curve wasn’t as dramatic. But—what the hell? Seriously, what the HELL? There was my finger, part of my own body, twisting to the left. Overnight. And the thing is, I think I knew something was wrong the second I woke up. I could still feel the tingling.

I lifted the bedcovers and looked at my feet. All of my toes seemed to be tingling, too. But my right big toe seemed particularly weird. I looked at it. And yes, it seemed to be pushing into the second toe. I felt it with my fingers. Somehow, the bones of the toe had migrated to the right edge of the flesh, so that they were pushing right against the second toe. And the top bone seemed more acutely angled than the bottom bone.

Okay, I know, they really are the most hideous toes in the world. But before Friday morning, Miss Right Big Toe wasn't shoved into her companion's personal space.

Okay, I know, they really are the most hideous toes in the world. But before Friday morning, Miss Right Big Toe wasn’t shoved into her companion’s personal space.

It is now Sunday. It’s been a pretty nice weekend. We just had dinner with our friends Leo and Elise, which made me happy. I saw my beloved Julie for our  weekly high holy Sunday breakfast at which all important matters are dissected. The weather’s been good. Brian made beautiful salmon, and put flowers he grew in a little vase. I talked with my Mom. Life is good. Normal. Ish.

But I don’t even have words for how freakish it feels to go to bed with your bones one way and wake with them another way. To have your body changed for the rest of your life while you sleep (oh, and it will be—I’ve had changes in other bones, but not in a single night. I never even heard of such a thing—have you? Has anyone?). It’s going to be a little harder to walk now. A little harder to do the crafts I love. Not too much harder, but a little. I feel stunned by the unreality of my new reality. By my miracle-in-reverse.

And, I wonder. It’s getting close to midnight. If I go to sleep now, what am I going to wake up to tomorrow?

135journals: My husband’s first day as a free man

30 Jun
My dear husband will be wearing these glasses every day until forever. Promise!

My dear husband will be wearing these glasses every day until forever. Promise!

Yesterday was the first day of the rest of  Brian’s life. That is to say, it was the first Monday of his life as a member of the retired. What will he do with this endless expanse of possibility? Right now, his intention is to keep it open. He hasn’t spent the last whatever years of his life teaching Asian literature for nothing. The beautiful spareness of Chinese poetry pulls at his heart. So does the Japanese concept of Ma, or negative space. Although, in the Japanese thought Ma has a much more dynamic and interactive meaning than not being. It is part of the fabric of the whole, a part of the dance of possibilities. Oh dear, I am getting very abstract here. What I mean is, my husband is bravely trying to let himself be open and to find out what calls to him. And I am very interested to see what this human being to whom I’ve been married for the past 30 years is going to discover.

His first no-longer-employed Monday was not entirely filled with Ma. I had an appointment with a famousy-famous hip surgeon to see if I needed hip surgery at the famousy-famous Hospital for Special Surgery in Manhattan. I didn’t think I needed hip surgery, but another one of my doctors thought, well, maybe, I don’t know, just check it out, so grumblingly, I did. I reorganized my gigantic binder of tests and visits and brought it in. And this time, I brought Mr. HH with me. Despite my relative certainty that I wouldn’t need surgery (maybe some kind of injection though because of osteoarthritis?) I did feel afraid. I’ve gone to many scary doctor appointments by myself, and most of the time I’ve managed okay, but sometimes I come out of them with this jumble of notes that don’t make any sense because I’ve felt a rushing of panic clogging my ears when the doctor was giving me information. So the dear husband and I agreed that he would come to scary appointment and be a second set of ears for me. Anyway, I had some X-rays, talked to perfectly nice doctor, don’t need surgery, then husband and I had a pleasant walk around the Upper East Side.

“Look at that building,” Brian said, pointing to an old brick building. “A Czech gymnasium. I see a lot of Czech names around here” (near 70th and York).

“I think  a lot of Czechs and Germans settled this neighborhood,” I said. “Every part of Manhattan is so different.”

“It’s so different when you walk it,” he said.

“I know what we should do!” I said. “We should get a big map of Manhattan and get a yellow marker and color in every street we walk after your retirement. And we should walk every street in Manhattan!”

“Where does anybody even get a map nowadays?” he said. “Everybody has GPS.”

“Huh.” I was stumped, too. Maybe off the internet? Barnes and Noble? I don’t know.

He looks at his phone. “There’s a gourmet shop ten blocks away. We can get cheese.” Cheese is part of his holy trinity of consumables, along with coffee and bread. So we wandered uptown past more stores. We people watched. I saw lots of people walking dogs. I saw a woman carrying a dog. I saw lots of doggy day care businesses. There is no shortage of dogs in New York. And I almost never, ever see dog poop. So, good work, New Yorkers. The Upper East Side is full of uniformed private school kids who burst out into the streets at 3:30 or so, along with moms and dads and nannies with strollers. I see a schlumpy looking guy in a Gilligan hat and pink socks lumping across the street. People wearing neon-bright sneakers–that’s a thing now, I guess. Lots of women with pretty legs and short skirts and little sandals. Workers with hard hats ignoring interested onlookers. Street sellers hawking fruit, scarves, books, watches.

At the gourmet shop we buy two small pieces of ridiculously expensive cheese and linger over other delicious but outlandishly expensive items–gluten free lemon bars, figs, bright red $5.99 a pound tomatoes. As we leave we see the pasta hanging on the line. They had gluten free ravioli for $12.99 a pound. We passed. We’ve made homemade pasta before, but it is a pain. Still, I liked watching it hanging there.

We two flaneurs amble back to our car, driving home through rush hour,  but the traffic still isn’t TOO bad. We listen to a podcast. “The drive was only one This American Life long,” Brian says. He makes chicken and salad and pasta for dinner and I fold clothes. I run off to my book group and when I get home, he is sitting on the back deck in the semi-darkness,  looking at the trees and the sky above.  His hands are folded behind his head. He smiles at me, and in that smile I see a happiness formed of the possibility of a joyful anything to come.

Writing prompt: What possibilities do you see?

What I Learned about the Future of Breast Cancer Detection from Joining a Clinical Trial

16 Jun
Helping other women lets me get in touch with my inner goddess (thank you, Wikimedia Commons and the ancient Minoan culture!)

Helping other women lets me get in touch with my inner goddess (thank you, Wikimedia Commons and the ancient Minoan culture!)

Because I just love living dangerously, I am a card-carrying member of the Sloan-Kettering Special Surveillance Program for women who are at a high risk of breast cancer. That means that every six months, as I did yesterday, I pop in to the famous cancer hospital for a mammo or an MRI and a little hands-on quality time with the wonderful Dr. Mangino who runs the program. I call it my Semi-Annual Sloan-Kettering Day of Beauty.  I’m lucky, because I still don’t actually have cancer. And anyway, today I want to tell a happy story. It’s a story about how I got to see the future of medicine.

One of the benefits of being an “interesting” patient who has the good luck to be treated at a teaching hospital is that I have the opportunity to be asked to participate in clinical trials. Last winter, before I went to my last S-K day of beauty, I was asked if I would, in addition to getting my usual MRI, get a special kind of mammogram for this study:

https://clinicaltrials.gov/ct2/show/NCT01716247

“Comparison of Contrast Enhanced Mammography to Breast MRI in Screening Patients at Increased Risk for Breast Cancer.”

According to the information provided by Sloan-Kettering via the National Institutes of Health, the purpose of the study is “to determine if Contrast Enhanced Spectral Mammography (CESM) will be able to detect smaller/earlier breast cancers as well as breast MRI can.”

What that meant was that instead of just having a plain mammogram, I had an IV needle placed in my hand filled with a special dye. As it circulated into my breasts, it made the contrast between different types of tissue clearer.

Honestly, except for the slight annoyance of the initial pinprick and the tangle of the IV line, it wasn’t a big deal at all. And after it was over, a young scientist working on the study spent time talking to me and showing me some of the preliminary results of the study. He showed me pictures of regular mammograms and contrast-guided mammograms. The results were remarkably different. It looked as if the different areas of tissue were limned in dark gray in the contrast-guided mammos, whereas the regular ones looked much more pale and indistinct. I felt sorry for radiologists who had the terrifying—but boring-looking—job of trying to find suspicious pieces of matter on such a vague field of off white. It looked very easy to miss a cancerous lump in such cases. After I saw that result last winter, I went home feeling very pleased that I had been part of something bigger, something that might be useful someday.

And yesterday, I was even more pleased, because the lovely Dr. Mangino told me that the next time I came, I would be getting a contrast-dye mammogram for real. “The study results are looking great,” she said. “I wasn’t convinced at first. But I’m impressed.” At the front desk, the young receptionist told me that Sloan-Kettering is still one of the few places—if not the only place—in the nation where contrast-enhanced mammograms are done. Yet. But if they’re as good as they look as if they are, they’ll be coming. And when they do, they’ll save lives. And I’ll know I did at least a tiny little bit to help.

Do you have any interest in joining a clinical trial of any sort? You can find out more at ClinicalTrials.gov.

135Journals Blog Health Corner: What It Feels Like When You Feel Like Crap

11 Jun
Welcome to my Microbiome (altered art journal pages by Alexandra Hanson-Harding )

Welcome to my Microbiome (altered art journal pages by Alexandra Hanson-Harding )

Did you ever wonder what it was like to feel like crap? Probably not. If you’re like most people, i.e., everyone, you’ve probably felt like crap. And if you aren’t feeling like crap, you probably don’t want to remember it. But have I not seen eight million motivational infographics on the importance of living in the moment? Well, friends, if one if going to live in the moment, one is not always going to be doing meditation by the ocean and feeling full of vibrant life energy. Sometimes the moment is being in a sucky meeting where some halfwit is publicly berating you for a typo on a meaningless report. Sometimes the moment is yes, that is YOUR screaming brat on the overstuffed airplane. Sometimes the moment is when you’re desperately searching around on the laptop for an amusing viral video to watch with one hand while you’re holding your syringe filled with methotrexate in the other, getting the nerve up to jam it into your leg. Sometimes the moment is that moment when you actually do jam it into your leg and it actually hurts and you say “OW!” and think DAMN it, and feel mad at yourself because why are you being such a goddamned wimp. It shouldn’t hurt that much. It only hurts that much if I hurt in too many other ways. Right now, some of the vertebrae in my neck are sore and swollen, and my feet hurt, and my tongue is sore, strangely enough, and I’m very tired, and when that many things confuse my senses, I have less resilience against small irritations like a tiny needle.

Today I am feeling like crap because I had two main things I wanted to do: go to a new acupuncturist and go to visit a friend who is very charming and smart and who has terminal cancer. That, and of course, having an inflammatory autoimmune disease. But I digress. This morning I woke up at 4:00 a.m. feeling very sick to my stomach. After 8:30, I fell asleep for an hour in my kitchen reading nook, but had were strange, disturbed dreams. I also had a sore throat and shivers, as I often do these days. And I was still sick to my stomach. I have been lying in my nook looking at the windows that I have decorated with hundreds of strands of woven yarn (compulsive art project), looking at the green trees beyond, and up at the hemlock tree that I can see through the skylight. I see a brass bell I bought at a castle in Germany. I see a vase full of small glass beads that I want to string, and a glass of water that looks too tiring to drink. I see the phone. I want to call my friend but it  feels too tiring to talk to anyone. I would only whine anyway. It took me hours to tell the acupuncturist I couldn’t come. He was nice. He said, “Try drinking coke. If you still feel sick later, you could try chewing Juicy Fruit gum and swallowing it. It’s very binding.” I laughed. “That’s the best Alternative Medical advice I ever heard,” I said. “I’m definitely trying that.” Said it sounded better than a kale smoothie. “You DEFINITELY do not need a kale smoothie right now.”

I feel guilty for not seeing the acupuncturist and my friend. But I don’t want to spread my germs. And I can’t imagine summoning the energy to get into a car and driving it. I’m sweating and shivering. My stomach is a knot of pain. My eyes are half-closed and gravity feels as if it’s crushing me onto the cushion. My neck is throbbing. All around me, grown-ups are doing useful things. I’m just living in the moment. The crappy, but real, moment.

Writing Prompt: Do you ever have times when you feel like crap? Go ahead. WHINE.

Strangely, Having an Official Disease Diagnosis Does not Make Me Want to Take Up Sky-Diving

19 May
My doctor says that many of his patients find that learning to give themselves injections is "empowering." My verdict? Actually--yes!

My doctor says that many of his patients find that learning to give themselves injections is “empowering.” My verdict? Actually–yes!

I have not written in this blog for more than two months. It is no coincidence that I stopped writing after I visited a highly recommended rheumatologist who spent 90 careful minutes with me, squeezing my joints, asking me questions that were similar to what my last rheumatologist had asked, and asking me what I wanted to ask. But he also did something that my other, very smart but very cautious rheumatologist had not dared to do in several years of treatment: give me an actual, solid diagnosis. He said to me, looking at my three-ring binder filled with five years of MRIs, cat scans, biopsies, doctor visits, etc., “You’ve had a LOT of testing. But not a lot of treating. I think, given your family history, given your symptoms, given everything, that you have an inflammatory autoimmune disease in the spondyloarthropathy family.”

“The spondyla—“

He helped me spell it out for my journal and explained it for me. Because I have a certain blood factor called HLA B27, I am susceptible to a disease called ankylosing spondylitis (which basically turns your whole spine into one stiff unit) and several similar diseases—spondyloarthropathies. They include axial spondyloarthropathy (which has different manifestations, but can include having more arthritis all over your body), psoriatic arthritis (a combination of psoriasis and arthritis—nice!), Sjogren’s syndrome, which makes your eyes dry and other nasty things, and even Crohn’s disease—a severe intestinal problem which is called an enteric arthritis. I never knew that there could be an intestinal arthritis, but there you go. I know a lot of things now that I didn’t know, thank you Google, Twitter, and Pinterest.

Anyway, what I have is similar to rheumatoid arthritis, except that it lacks the exact blood factor that rheumatoid arthritis factor has. To have that, one would be sero-positive. This is sero-negative arthritis. But it’s not the same as osteoarthritis—which I also have in some parts of my body, such as my hips. That’s just bones wearing out and rubbing against each other. Or synovial fluid running out, or whatever. I can’t think about osteoarthritis right now.

To have a diagnosis after five years of searching for a reason for the pain and fatigue that have changed my life, and my husband’s life, so much, is a relief in many ways. For one thing, I have medicine to help treat the disease now, not just the pain and the sadness that it causes. To their credit, my doctors have believed that something real has been happening to me from the beginning, even if they couldn’t name it. But now I have two kinds of drugs that I get to inject each week, and they are starting to help. But on the other hand, I feel a shifting sense of identity as the fact of my diagnosis becomes real to me. It’s not a disease that will kill me. On the other hand, it’s not going to go away. I’m going to spend the rest of my life fighting against an enemy that wants to lock me in a stone cage made of my own body. I know its name now. And that’s good. But it’s not filling me with zest for life or an exciting new sense of purpose. Right now, it’s making me feel as if someone threw a brick at my head, and I’m just now sitting up and rubbing the bruise and going “whaaaa—?”
So dear friends and readers, please pardon my long absence. Perhaps now that I’ve told you what’s kept me away, I’ll be able to be silly, curious, and natural again. I hope so. I miss you.

Writing Prompt: Did you ever get any news that took a long time to digest?