New Book!

My new book is now available for pre-order on Amazon. It will be published in April 2018. I love the colorful cover.

100 Tips & Tools Front Cover

https://www.amazon.com/Tips-Tools-Managing-Chronic-Illness/dp/1942891938/ref=sr_1_1?s=books&ie=UTF8&qid=1513527206&sr=1-1&keywords=Joanna+Charnas

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An Unexpected Benefit of Bad Parenting

This blog was first published on the HuffPost Blog on 11/09/2017

My mother had some well-intentioned but grossly misguided ideas about parenting, among them her notions about how to take care of her sick adolescents. Charles, my only sibling, is a year and a half older than me. As young children, we often came down with the same illnesses. Charles had an extra bed in his room during my early elementary school years. In the mid 1960s, our grandparents bought a color television, a newly available luxury, and gave their old large black-and-white TV to my mother. Mom had a medium-sized set in her bedroom, and the living room was too formal for a TV, so the old black-and-white TV went into Charles’ room. When we were ill, Mom allowed me to camp out with him, and we’d watch television as we recuperated, often helping ourselves to the boysenberry ice cream in the freezer. We never seemed to fight when we were suffering through a cold or flu together.

We moved to California in 1970 when I was ten, and Charles’ new bedroom didn’t have an extra bed or a TV in it. In California I recuperated from illness alone in my room. At the onset of puberty, I began to get frequent and severe respiratory illnesses. I never watched television when I was sick during my adolescence. Instead I had a stereo in my room, and I would often fall asleep during the day with my headphones on, listening to Cat Stevens and James Taylor.

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When I was in my early twenties, Mom told me she believed she’d allowed Charles and me to have too much fun when we were young and sick. She didn’t want illness to be attractive to us, and as a result, when we were older she developed a completely hands-off style. I assume she called our doctor, because medications were delivered from the pharmacy, but I don’t recall her ever taking care of us in any other way. We got out of bed to feed ourselves breakfast and lunch, and went back to the kitchen at dinnertime to retrieve whatever the housekeeper had cooked for the evening, which we ate alone in bed. I had the London Flu in 1973 when it was a national epidemic. San Mateo County where we lived had the highest mortality rate in the United States from that flu. During this illness, my stepfather brought me dinner on a tray once, the sole demonstration of parental concern.

One time Mom ordered three types of cough medicine and presented them to me, failing to give me dosage instructions. I took all of them at once, not knowing any better. No wonder I fell asleep listening to Sweet Baby James and Peace Train. Several days into my cough-syrup haze, Mom realized my mistake and became enraged, as if I’d purposely overdosed myself into a stupor. I missed so much high school due to constant illness that on a report card one teacher praised my skills at catching up.

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At nineteen I began to have episodes of illness caused by Chronic Fatigue Syndrome, and I’ve been sick much of my adult life. With the notable exception of help from one boyfriend and the care I received during a twenty-four-hour bug when visiting my father and stepmother, I’ve always taken care of myself. I never expect anyone to help me when I’m sick, and except when recovering from outpatient surgeries, I rarely accept offers of assistance.

Mom’s assessment of the time Charles and I spent recovering from illness was not accurate. The camaraderie I felt when we were ill together as small children was a gift, and it provided me with happy memories of us watching reruns of I Love Lucy and Perry Mason, when there would otherwise only be memories of coughs and clogged noses. My mother’s desire to make sickness unattractive was unnecessary and based on an erroneous belief. Although it wasn’t her intention, Mom succeeded in making me resilient and self-reliant when ill. These traits have proved invaluable. I know I’ll be fine on my own no matter how sick I become. Illness has caused many other miseries, but I’m never concerned about how I’ll take care of myself. I’ve been doing it since I was thirteen.

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I’m fifty-seven as I write this, and there’s no point in being upset about bad parenting that took place four decades ago. Soon I’ll have my first inpatient hospitalization to remove my spleen. I’m worried about various aspects of this surgery, but not at all about how I’ll recover alone as I heal. And for this unexpected result of an abysmally poor parenting choice, I’m grateful.

GOOD SKIN AND LEARNING TO APPRECIATE THE PRESENT

In my teens, complete strangers began to approach me and compliment my skin. It happened fairly regularly—several times a year for decades. Women in ladies’ rooms, people in checkout lines, and others I met randomly felt compelled to compliment me. I thanked those strangers but always found the compliments odd. They used words like flawless and perfect to describe my complexion. But I couldn’t see the difference between my skin and the skin of most other people.

Now that I’m in my mid-fifties, I find my skin is aging. It’s beginning to sag, and liver beauty-treatment-163540_960_720spots are appearing. I pine for my youthful skin. But there are other parts of my body that have yet to show age. My calves look like they did when I exercised rigorously in my thirties. I neither understood nor appreciated my youthful good skin, but my legs are holding up well. I’m going to wear shorts and knee-length skirts until everything begins to sag. There’s nothing wrong with showing signs of age, but I’m going to make a point to appreciate what’s left of my youthful body for as long as it lasts.

Other Families

This blog was first published on the HuffPost Blog on October 24, 2017

I planned to skip the bar mitzvah of Aaron’s middle child. I’d traveled from San Diego to Miami Beach four years earlier to attend the bar mitzvah of his oldest child and intended to attend the one for his youngest offspring in another two years. Two out of three celebrations would be a sufficient display of loyalty to my old friend. Broke from three out-of-network eye surgeries, I didn’t have the money for a trip to Miami Beach that year.

But as the Bar Mitzvah approached, I began to feel a deep ache, as if I were missing out on an important event in my own family. I’ve learned to trust my gut feelings, so I called Aaron and told him I’d go after all. I took a sixteen-hundred-dollar leap of faith—the cost of the air fare, hotel, and incidental expenses. My faith was validated a few weeks later when I traded a family heirloom and netted an extra sixteen hundred dollars from the transaction, exactly the amount I needed. This trip was meant to be.

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I met Aaron when we were both traveling solo in 1988 in Paris. Eight years later I stood up for him at his wedding, where I met his family and all of his in-laws. I’ve been treated like extended family by them ever since. At the Friday night service the night before the bar mitzvah, in which the relatives of the bar mitzvah boy are incorporated, I decided to sit in a back pew. When I ran into Aaron’s mother-in-law in the ladies’ room before the service, she urged me to sit in the front of the sanctuary with the family. I confessed to her that if I sat up front, I would cry, and I did. I used an entire packet of Kleenex while sniffling.

I love these rites of passage: weddings, bar mitzvahs, and funerals, and I’m deeply affected by them. I recently attended the funeral of someone everyone called Mama Lola. She was the mother of my close friend, Stella. Stella has invited me to many of her family’s events and celebrations—weddings, baby showers, Thanksgiving meals, and Christmas mornings. When I threw a big party to celebrate my book launch, several of her relatives attended. At the funeral, all three of Stella’s adult daughters and two of her grown grandsons hugged me in greeting. I believe I was one of the only non-family members at this large funeral. I met other members of the extended family afterward at the reception—in-laws and several of the in-laws’ parents. Mama Lola had six children, eighteen grandchildren, and twenty-two grandchildren. Everyone I encountered made me feel valued and accepted. I was inspired by the eulogies, delivered by a son and son-in-law, as they extolled the values that Mama Lola instilled in them. She had clearly passed on her welcoming nature, in abundant evidence that day, to her descendants.

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I am deeply grateful to these two families for making me feel welcome. I love my immediate family unconditionally. We have nine members, including a new in-law I’m hoping to get to know. We are a living organism existing on two continents, and in perpetual evolution. Within healthy families there’s a constant flux of accommodation, being forgiven and forgiving, changing and adjusting. We must change or we fracture and die. Sometimes everything flows smoothly, and other times the process takes mindfulness and effort. But it is an effort with the deepest rewards.

When we are on the fringes of other families, we reap the rewards of inclusion without having to make the same kinds of effort that our family of origin inherently requires. It is as if these other families lifted the flaps of their big tents and invited us in for a brief while to enjoy all the benefits, but none of the demands, of family.

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Being included in the families of my good friends deepens my appreciation of my own family. I am reminded of the importance of acceptance and love as I see it mirrored in other families and feel it from them briefly. At the bar mitzvahs, Aaron’s parents and in-laws marvel that I travel so far to be present. I don’t know how to explain the depth of gratitude I feel toward them for letting me into their tent to enjoy the embraces of their tribe. While I’m with them, I feel at home.

SNAGGING THE LAST SPACE

There is something profoundly satisfying about snagging the last space in a crowded parking lot. The center where I grocery shop is often packed. Finding a space can seem like either a competitive sport or an exercise in mindfulness in which I have to coach myself through the search, remembering that with time, I always find a spot. But when I cruise through the parking lot and spy one empty space, I always feel victorious as I ease my car into it. This doesn’t make me a good person. I should relax about the parking. But on a day when I’m sick or tired, I enjoy this small victory.multi-storey-car-park-1271919_960_720

BROTHERLY WISDOM, PART 3

After my mother died, my brother took me aside to give me budgeting advice. He knew I’d be inheriting money from her and wanted to ensure that I used the money wisely. He suggested I spend a little of my inheritance, no more than ten percent, but enough to help me feel that I’d enjoyed myself. That way, he counseled, I’d be less likely to use the other ninety percent on impulse buys or indulgences. I took his advice and used part of the money to fund a low-cost trip to Europe.

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I’ve tried to extend his advice to other parts of my life. When something good happens, I don’t go hog wild. I celebrate, but always in moderation, knowing I’ve saved the balance of the resource (time, money, etc.) to use when I really need it.

Tumor, Tumor, Tumor

This blog was first published on the HuffPost Blog on October 18, 2017

I’ve noticed that people often compare their tumors to edibles. It’s as big as a walnut or It was the size of a grapefruit! they exclaim. I’ve been telling my friends and family that my benign tumor is the size of a golf ball. That’s what it looked like to me, round and white on my MRI scan, surrounded by a much smaller border of spleen. I’ve learned recently that the spleen is about as big as a fist. Imagine something like a golf ball lodged in there. My spleen didn’t expand to accommodate the tumor, so the spleen to tumor ratio leaves my organ lacking. I’ve been joking that I’m going to buy golf shoes and shorts so my tumor will have friends. This is the third joke I’ve created in my life. It’s not a good one, but it comforts me every time I say it. The recipients of this feeble attempt at humor always laugh or smile.

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I knew bad news was coming when I received a message from my doctor while at work on the Friday before Labor Lay. I’d seen her three weeks prior about the strange array of symptoms I’d experienced all summer. Some of them were new—the stomach and back pain—and some of them were familiar, like the extreme fatigue that rendered me splayed on my couch, barely able to move and aching all over. The latter were the symptoms I’d been experiencing my entire adult life and were caused by Chronic Fatigue Syndrome, (CFS) an immune system dysfunction with an unknown etiology. While accustomed to being laid low by my poor immune system, the things that usually brought me back to my baseline health were not working. After two months, I made an appointment with my general practitioner. She’d arranged for me to have a battery of tests, including an ultrasound of my abdomen. I had the ultrasound the Thursday before Labor Day. The next afternoon at 2:30 p.m. when I received my doctor’s message, the instructions were to call her immediately. When I returned the call, her office staff informed me that she’d left for the day, but they caught her as she was walking out the door. She returned and told me my ultrasound results: a two-inch mass in my spleen. She ordered an MRI stat, and I went home in shock.

A long holiday weekend is not the best time to receive bad news when you live alone and have no local family. But I do have a close friend who’s like a sister to me. I often drop in on her, and I drove over to her house after work. When I told her about the mass, she looked as though I’d slapped her—hard. As her shock wore off, she burst into tears. I appreciated her assurances of support but felt terrible that my bad news distressed her so deeply. I decided not to tell my family about the mass until I knew if it was a cyst, a benign tumor, or a malignancy. I have a small family, and we’re close and supportive. But my nearest and dearest had been through enough this decade. My brother had a near- fatal accident six years ago as well as several life-threatening events related to the aftermath of the accident. My father has Alzheimer’s disease, and we have witnessed his slow decline. At present, he lives in a nursing home, and we are thrilled when he speaks in full sentences. I didn’t want to worry my relatives unnecessarily or make anyone else cry. Instead I reached out to several other close, loving friends and waited.mri-2813904_960_720

Despite the stat referral for an MRI, by four o’clock on Tuesday, the first working day after the holiday weekend, I hadn’t received a call scheduling the test. The referral process did not feel very stat-like to me. I called my doctor’s office to advocate for myself, and by Wednesday morning I had an appointment. Thursday morning I lay in the MRI machine, endlessly holding my breath and letting it out. The MRI technician told me I did “great,” and I experienced an unseemly pride in my MRI capabilities.

The next day, back in my doctor’s office, she walked into the treatment room and announced that I did not have cancer. Instead she believed I had a rare, benign splenic tumor, a hamartoma. I asked her some questions about the location of the tumor, wondering if it could be causing my new symptoms. She didn’t know and refused to contact the radiologist, explaining that it would take too much time. This surprised me, as she’d been forty minutes late for my appointment after taking care of a patient in the treatment room next door. I knew this because I’d seen him being called into the treatment area ahead of me and could hear both of them through the wall. Informing me that she lacked time ten minutes into a twenty-minute appointment did not endear her to me, especially since I’d waited forty extra-nerve-wracking minutes wondering if I had cancer. When I pointed out that I was only halfway through my appointment time, she snapped that she’d spent an hour researching my tumor at home the previous night and cited all of the administrative time my appointment required. It didn’t seem prudent to argue with her, so I let the matter go. But I wanted to know the precise location of the tumor.doctors-office-1944117_960_720

Later in the day, at the urging of a friend, I tracked down the MRI clinic. It took me about ten minutes to get through, only because I didn’t have the phone number. Every place I called, I stressed the word tumor. Tumor, tumor, tumor. It’s catchy. I’d never lie. I always described it as benign, but when I spoke to the office staff at my doctor’s office, and then to the hospital where I’d had the MRI, and then to the front desk staff at the MRI clinic, I explained that I needed information about my benign tumor. I could have used different language, saying for example that I needed more information about my MRI findings. I’m sure the various people I spoke to would not have been as responsive as they were had I used vaguer language. Tumor, even a benign one, is attention grabbing.

The radiologist answered all of my questions but couldn’t explain my symptoms. At least I knew where the tumor had lodged—right in the middle of my spleen. Nevertheless, when I had a surgical consult two weeks later and looked at the MRI scan, I was shocked by what I saw: a lot of tumor with a periphery of spleen. I’d spent the previous two weeks learning as much as possible about spleens and hamartomas. I sometimes describe myself as a freak of nature. I have an orphan disease (CFS), one that is not completely understood by the medical community, which receives few research dollars and has no cure or even standardized treatment. At fifty-six I had a huge, fast-growing cataract in my right eye, and now I had a rare, albeit benign, tumor. My new surgeon can easily remove the tumor, but it can’t be extracted without removing my spleen, which both he and I would like me to keep.

The surgeon believed that the hamartoma might be causing my symptoms. Two weeks earlier, my doctor had given me medication for the back pain, and I’d cut back my hours at work and temporarily put aside my writing at home. As a result, my health had begun to improve. Although the spleen isn’t a vital organ, it’s an important one, and it plays a key role in the immune system. Since my immune system is already impaired, I don’t want to hinder it further.

My surgeon told me he plans to consult with an oncologist since there’s still a miniscule chance my tumor is not a hamartoma and might be something more pernicious. I don’t want to be the recipient of more bad news. If nothing new comes from the consult, my spleen will be reimaged in three months. I’m hoping my health continues to improve and that my spleen remains in my body.

I’m thinking about golf a lot lately, something I don’t usually contemplate. I might even buy a golf ball so I have a tangible object to hold as I wrap my mind around this new twist of events. Whatever happens next, I’m ready.

 

Pear-Shaped and Proud

This blog was first published on the HuffPost Blog on October 10, 2017

In 2003, two years after my marriage ended, and with the most intense mourning over, I lost the weight I’d slowly gained during the ten-year relationship with my husband, all twenty-five pounds of it.

I’d always had difficulty buying clothes. Five to fifteen pounds overweight for the majority of my adult life, I’d blamed my “fit” issues on my weight. But after transforming from a size sixteen to a size ten, I faced a rude shock. I experienced as much difficulty finding clothes in my smaller size as I’d had at my larger, curvier one. The issue? I was short waisted and pear shaped. I’d read that when she was first lady, Nancy Reagan was a size four on the top and a size six on the bottom. The article explained that being pear shaped was a common issue for women. Our first lady had clothing issues too! I found solace in our common challenge, although I tackled mine in the racks at discount stores while Mrs. Reagan had the help of topnotch American clothing designers.

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I’ve been chronically ill since I was nineteen. Out of necessity, I focused my energies primarily on optimizing my health and secondarily on achieving and maintaining a healthy weight. I always managed to be presentable. I may not have looked stylish, but I could pull outfits together when I needed to. However, if I planned to attend a special event, I might try on fifty or more dresses before I found one that fit or could be tailored to my proportions.

With a multitude of health issues, my hip to waist ratio barely ranked on my list of life problems. Managing a chronic illness is an exercise in frustration tolerance and fortitude. Anyone who lives with one knows it requires the serenity of a Nepalese monk to navigate medical and insurance systems while remaining calm. Recently I spent an hour and a half on the phone with the pharmaceutical company that manufactures my new medication. By the time the support person resolved my problem, I needed to take a nap. This was not an isolated incident. Managing my health needs is time consuming and demanding.

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Given these demands, I didn’t pay much attention to my pear shape. That changed in my fifties when I was smitten with fashion and began to appreciate it as an art form. I started to push the boundaries of my appearance, which forced me to take a frank look at my big hips and short waist. It was time to face reality. Over several years, I learned how to work around my shape in order to dress the way I desired. Ultimately I decided reality wasn’t bad; it paled in comparison to my poor health. As I dressed with more flair, I came to think of my body as a classic pear, giving my shape dignity.

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At my heaviest and sickest, I never disliked my body. In my early twenties—decades before body positivity and body shaming became part of our cultural parlance—I decided to embrace the former and reject the latter. I never felt embarrassed in a bathing suit and never had a problem being naked in front of lovers. Even when in pain, I’ve accepted the good with the bad and haven’t questioned why I have a body with so many issues.

Rather than fret over my shape, I choose to emulate Popeye, who declared, “I am what I am.” I’m able dress the way I want to, and I have a warm relationship with my tailor. I work around the challenges genetics gave me. And like Popeye, I don’t make excuses. I’m pear shaped and proud.

SKIPPING THE ACADEMY AWARDS—LESSON LEARNED

In the spring of 1979 during my freshman year of college, my mother informed me oscar-2103653__340she could get me a seat to the Academy Awards. She had a good friend who was a member of the Academy. This friend, learning from Mom of my love for all things Oscar, offered to give me one of her tickets. I declined, claiming bad timing and telling my mother I appreciated the offer but wanted to take her friend up on it another year.

By the time the 1980 Oscars rolled around, Mom had experienced a falling out with this friend, and they never spoke again. My opportunity to attend the Academy Awards disappeared with the demise of their friendship. I laugh at this now. I could have seen Jon Voight and Jane Fonda win Oscars for Coming Home, and instead I chose to huddle diligently in my tiny dorm room working on assignments that could have been handed in late. I learned from this decision to accept good things that come my way, even if the timing isn’t perfect. Although I didn’t go to the Oscars, I obtained a good story and a great life lesson from the experience.