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Book Review: The Art of Misdiagnosis

As a memoir and creative nonfiction writer, it’s no surprise memoirs are my favorite books to read. I think the greatest test of a memoir is knowing the big surprise and still wanting to read the book. Unlike other books, we know what happens going in. We don’t read to know what happens, but how the writer processed what happened.

In reading The Art of Misdiagnosis: Surviving My Mother’s Suicide, by Gayle Brandeis, it is no surprise that story centers around her mom’s disappearance and suicide just a few days after she gave birth to her son. The subtitle gives that plot point away and the book begins with Brandeis’ blunt “After my mom hangs herself, I become Nancy Drew.”

But from there the story doesn’t follow the usual progression. We might expectmisdiagnosis Brandeis to simply look back for clues about why her mother killed herself, perhaps blame herself, and wonder what it means for her newborn. But the book is a combination of much more.

Brandeis weaves the troubled time leading up to the moment we know is coming with letters she is writing to her mom, following her mother’s death. Also, we see snippets of the script of The Art of Misdiagnosis, from which the book takes its title. It was the documentary her mother had been working on. The documentary chronicled the diseases her mother thought plagued her family – porphyria and Ehlers-Danlos syndrome. We also see Brandeis’ past illnesses and experiences with being “the sick one”, which were both real and made up.

As her mother’s mental illness progressed and I read the troubling interactions between the two near the end of Brandeis’ pregnancy and even as I knew what would ultimately happen with her mother, I felt myself pulled into the story emotionally. I almost forgot what was coming, wondering with Brandeis, and perhaps wanting to suspend belief about what would happen to her mother.

We don’t read to know what happens, but how the writer processed what happened.

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Like anyone who loves someone with a mental illness, Brandeis struggled with creating boundaries with her mother, yet wanting to be there for her. Near the end of the book she talks about the many pursuits that had kept her mom’s interest over the years and how she and her sister had always wanted to believe that things would turn out okay. She writes of her mother getting involved in Kabalah, “This is it, we thought. She’s better now. She found the cure. How easily we fooled ourselves.”

I also found the information about Brandeis’ early illnesses interesting. She was sick with gastrointestinal issues as a child and secretly prolonged her illness because being “The Sick Girl” and the mother of “The Sick Girl” were central to her and her mother’s identity. I too have been the sick one and know how sometimes even the wrong attention can feel so right.

As the youngest of a family of nine I often used sickness as a way to get attention until I finally realized that we are all much more than our weaknesses. I did so by after re-evaluating my brain tumor in light of my father’s disabling stroke. This is the subject of my own memoir, so it was interesting to read another’s writer’s take on it.

In researching how they might have helped treat her mother’s delusions that others are out to get her, Brandeis finds comparisons between her mother’s delusions and her own hypochondria, “people with delusional disorder share similar traits with hypochondriac, in that, “both selectively attend to available information. …They make conclusions based on insufficient information, attribute negative events to external personal causes, and have difficulty in encouraging other’s intentions and motivations.”

The book is complex and does not search for easy answers. But it is truthful to the experience of mental illness and to a daughter trying to understand the suicide of her mother. In writing this, she’s done what good memoirs do and made the personal more universal.

#Throwback Thursday: Is Nostalgia and Its Warm Hazy Glow Good for Us?

While regret is what we wish we would have done differently, nostalgia is what we wish we could live again. We see regret through cold glass looking over our shoulder and nostalgia through warm fire glow that we want to run toward.

In listening to the second half of the Hidden Brain podcast I started and wrote about last week, I was surprised to think about how universal the feeling of nostalgia is. We all have it and based on our age, have different songs, foods, and television shows that set the scene for what can give us that warm glow. We often share similar feelings of nostalgia for these cultural touchstones.

Since about the 1980s, marketers have been using our emotions and our sense of nostalgia to sell us things.  Our shared sense of nostalgia also makes for an easy source of memes and popular themes such at #ThrowBackThursday, which make us chuckle and laugh at the way we’ve all changed since then, even while we all feel that familiar pang.

And for more personal memories that make you wax nostalgic, there is often a tapestry of thoughts and emotions that make our sentimentality rise up. At this time of year, I find myself remembering summers Up North, as we Wisconsinites call anything north of where we live. alt=""

We used to travel for what seemed like a full-day to our Uncle’s Al’s cabin in Iron Mountain, Michigan. We spent one week a summer on the small lake, but all the years have been condensed into one epic week’s vacation in my mind. I see my brother, sister and I swimming in the murky lake, having competitions on the large black innertubes, my sister the only one old and brave enough to swim across. Having to use the outhouse except for at night when we could use the inside toilet. The time there was a mouse and we caught it in a bucket. The time we all got the flu and I got sick on fruit punch. Other, better times, eating meat and potato pasties and real Colby cheese which we picked up on the way. Fishing in the boat and singing the Fritos corn chips song so loud we scared the fish.

Later, when I was older, I visited my Uncle’s Eddie’s newer cabin next door and visited my Uncle Al’s cabin, now my cousin’s. I marveled at how tiny it was. I also didn’t remember all the other things I forgot when I was a kid. Being bored or crabby in the car on the way up. The spiders and the scent of the outhouse. The muck at the bottom of the lake. I don’t remember crying, though I surely did.

That’s because those memories aren’t the ones that give me that warm glow. Nostalgia is like a movie. You don’t use every shot. You edit it to include the frames that make the best story. And the bad ones you include are the ones that get the biggest laughs. alt=""

So is nostalgia good or bad? Researchers have found that instead of keeping people stuck in the past, it pulls them forward. When people feel nostalgic, they also feel hopeful and optimistic for the future. Instead of the past holding people back, people pull the past into the future.  So don’t feel bad basking in that nostalgic glow.

What makes you feel nostalgic?

 

Shoulda, Woulda, Coulda: How Do You Look Back On Your Regrets?

I recently listened to a Hidden Brain podcast on looking back at our lives. The podcast was broken into two parts: regrets and nostalgia. I am listening to the podcast in two parts, and am writing this post after listening to the first.regret button

As I listened to the recorded calls of people telling stories of their biggest regrets, I could hear that people were divided into two camps. Half talked about chances they didn’t take, the others talked about things they had done that they wished they hadn’t.

I’m both cases, people assumed that if they had done things another way, life would have been different. Some were serious, such as a daughter choosing not to speak to the father she would never see again. Others were more about a missed opportunity only realized in hindsight such as a man who passed up the lead in a play.

I have a similar regret. When I was a girl I loved gymnastics, thanks to Nadia Comeneci. I loved watching her in the Olympics and wanted to be her. My mom signed me up for our town’s recreational gymnastics league. It was coached by a woman who took us seriously and was prepping us for the high school team. My specialty was the beam. My big trick was a hands-free flip where I was suspended in the air for a moment, before landing with both feet on the tiny plank. nadia comenichi flips on the balance beam

I always planned to join the high school team, but when high school came I had a decision to make. My driver’s education behind-the-wheel was scheduled for the same time as practice. If I skipped that I wouldn’t be able to reschedule until after everyone else, which would mean I wouldn’t get my license until I was older than 16.

I just couldn’t wait. I chose behind-the-wheel and missed practice and ultimately tryouts. I don’t remember now why I could only try out that one time, but I never did. And then before I knew it, I was too old to even do a cartwheel anymore. But I still remember what it was like to fly, if only for a few seconds, before landing back on that beam.

These days I get my exercise in less exciting ways. I’ve had bunion surgery and broken more bones than I can count so I keep my feet on the floor with yoga and Pilates. When I use the reformer in Pilates class, I almost feel like a gymnast again because I can point my toes like a master,  but it’s not the same.

The podcast discussed how people learn from experiences that leave them feeling regretful.  I can certainly see the lesson that is to be learned from my experience, but I don’t really think I understood that until I was a lot older. Now when I look back on that time I would tell myself to wait to take the driver’s ed class. In the grand scheme of a life, waiting a year to get a license isn’t a big deal. But understanding that the new exciting thing isn’t going to be that exciting for that long was beyond my grasp then.

But I also know I couldn’t act that way when I was that person.  I also don’t know if I would have regretted going out for gymnastics instead of getting my license. According to the show people tend to regret things they didn’t do and wish they had longer than those they do and wish they hadn’t. It’s as if we can create a whole new reality in the vacuum left by what we might have done.

But if we really want to change the course of time, maybe the best way to do that is by learning from the places in our past where we think we made bad choices. That way those can become moments not of regret, but growth.

See you next time. When I’ll be still be looking back. But waxing nostalgic.

 

 

What is the Name for the Thing You Can’t Remember?

I have never been one to quote movie lines. To be honest, I have a hard time remembering most details of movies after I see them, much less the lines the actors said. A writing teacher once told me my lack of recall about the wider movie had something to do with the way I was focusing on the emotions of the characters. But that’s just one more thing I can’t remember the details of.

There is one movie I do remember the lines of – the oft-quoted Napoleon Dynamite. Years after watching, I find myself quoting this odd classic. Yet, like everyone else, I have trouble remembering even the simplest details at times.

For example, this morning I woke too early. As I was trying to coax myself back to sleep going through the alphabet and naming corresponding dog breeds (A: Affenpinscher, B: Border Collie, C: Chihuahua) I got to G and couldn’t remember the full name of the German dog.

As the minutes ticked on, I could remember that my aunt and uncle always had this type of dog. I remembered the one I saw on my walk yesterday. I remembered they were often chosen to be police dogs, but I couldn’t remember what they were called.

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I knew the name was two parts, so I thought of other common dog identifiers: terrier, retriever, setter, but I knew none were right. I liked the sound of German Hound, though.

I tried to think about other things so my brain could come up with the name without thinking about it. I remembered the beach we visited in Costa Rica a few months ago, but instead of seeing the placid blue waters or feeling the tropical breezes, I saw the stray dogs running on the hot sand. None of them helped me identify that full name of that German dog.

By now, I knew I wasn’t going to get back to sleep so I figured I may as well get up and look. But I remembered a study about how we are becoming too reliant on our phones. It turns out if we think a computer will store information for us, we won’t even bother to remember it. So, instead of letting my smartphone do the work for me, and risk never being able to remember the German dog, I decided to find out what was going on in my brain. That’s when I was surprised to find Napolean Dynamite.

It turns out what was going on my brain was called T-O-T-S. Not as in the line I can clearly repeat and annoy others with, “You gonna eat those tots?” from that movie, but Tip-of-the-Tongue-Syndrome. I would have thought science would have come up with a better name, but that’s what we have. At least in English. In French, it’s much better of course: “presque vu”, which means almost seen. Alt

Basically what happens is that your brain takes a detour instead of following the paths it usually follows to help you recall things. Specifically, the connection that normally takes place between the meaning of something (dog) and the sound (German whatever the last part is) don’t completely activate and you can’t think of the word. There’s an interesting video here if you want to watch the whole process.

But as you already know, once I stopped digging for the answer it came for me. As I was looking down on my phone digging into the psychology of forgetting, a bird flew overhead and dropped the word I needed. Shepherd.

Book Review: The Neuroscientist Who Lost Her Mind

As I read The Neuroscientist Who Lost Her Mind by Barbara K. Lipska, I was looking alt=forward to a medical memoir with the promise of something more. It is the story of a brain scientist who finds out she has multiple tumors that have spread to her brain from a previous melanoma diagnosis. She learns of the tumor as a result of an MRI after part of her field of vision disappears.

On one hand, the book is a pretty standard medical memoir.  She becomes sick, needs and undergoes treatment and we are not sure if she will make it. There is actually a lot of suspense in just that narrative and this is the part of the book I like best, being a regular reader of these types of memoirs.

But since Lipska studies the brain, this story provides an extra layer of insight into how someone who knows the brain would experience its breakdown. As someone who is interested in the brain and who experienced a tumor herself, I was also interested in this aspect of the story.

The book starts out during one of Lipska’s episodes when her brain is riddled with tumors, where she is not acting like herself. Later she will liken these episodes to “mental illness” or “madness”. She is running through the neighborhood after just dying her hair, the dye running down her neck.

Then it flashes back to explain more about her story and how she came to study the brain. She explains her first encounter with a real brain and what it was like to hold one in her hand and how she learned to slice one up for the lab’s experiments. She also talked about how her lab comes to get brains of individuals after they die. These brains are those of people who may have experienced schizophrenia as that is a main part of her studies.

Later when the multiple tumors in her own brain make her actions change, causing her to act irrationally, or become confused, she draws the conclusion that it is as if her brain is experiencing the mental illnesses she has studied. She also calls her state during the time when the tumors are causing her to act differently as madness.

Although she explained that some of the areas of her brain were the same as those that might be affected in someone with schizophrenia or another mental illness, I wondered about using the term mental illness or madness to describe her state. As someone who saw my own dad act like a different person, often irrationally and call me by my dead aunt’s name, after areas of his brain were destroyed by a hemorrhagic stroke, I wouldn’t have used these terms to describe my father.

I also wanted the book to have more of an emotional tone than it did. Perhaps because Lipska is a scientist, the book seemed a bit cold. I missed seeing how she felt about the brains she studied after experiencing something that they may have. If she did feel that what she was experiencing was something like madness, I wanted to know what she learned about the subjects she studied.

I also wanted to know more about how she felt after she realized how she treated her family. She does discuss this a little bit,  talking about how she treated her family and others badly during the times when her brain wasn’t working quite right, but I wanted to know how it made her feel and how they healed after the experience.

One quote in the book struck me. She sees,”We are all broken, that’s how the light gets in,” on the wall at Georgetown University. It speaks to her and she says to herself, ““Through my broken brain, the light starts getting in.”

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This book seems to be written quite soon after her experience, so some of the takeaways from the experience may still be coming. When the light gets in, it takes time for the insights to follow.

Book Review: Everything Happens for a Reason

I  started reading Everything Happens for a Reason by Kate Bowler before I realized it was on Bill Gates’ summer reading list. In reading Gates’ review, I can see why it’s on his list. He says he spends his days asking Why? Why do people live in poverty? Why do some people die young? Why? Why? Why?everything-happens-for-a-reason

As a young woman facing stage IV colon cancer, no one would begrudge Bowler’s right to herself the same question, Why me?

Her previous book, Blessed: A History of the American Prosperity Gospel discussed the prosperity theology, which is a religious belief held by some Christians that material wealth and health is related to their acts of faith. Throughout the book she discusses this belief, along with other  beliefs that try to rectify unfairness of the world.

She speaks of  some spritual laws as creating a “Newtonian universe in which the chaos of the world seems reducible to simple cause and effect.” In this world, if you follow the rules, things go well. And when something goes wrong, such as becoming sick, you must look for what caused it.

She speaks of not only the big why’s of life, but also the little tricks people follow in the name of religion to garner favor. One that is familiar to me, having been raised Catholic is burying a St. Joseph statue in your yard. Doing so is thought to help you sell your house.

As someone facing a serious illness, she becomes subject to everyone’s advice and beliefs on how to handle it, and people’s own “whys”. After writing about her illness in a well-publicized article she is subject to well-meaning, but often terrible advice from letter writers across the country. Much of it is only slightly more terrible than the things people she knows say to her thinking that they are helping.

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Some people have advice for her, some try to minimize her situation
and others just want to share their own stories. Some things people say is appalling, others are funny. She quips that God must be busy opening and closing doors and windows based on how many times she hears this line.  She receives so much advice, she even includes an appendix of things never to say to someone experiencing something terrible.

In the end, Bowler’s subtitle tells us where she ultimately lands on the “Why” of her disease. Subtitled: And Other Lies I’ve Loved speaks to the security she too has found in believing in the cause and effect narrative. If only we learn to do the right things,
everything will be all right. But sometimes things just happen.

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Remembering Morocco and a Free E-Book (Limited Time)

About four years ago my new husband and I took a trip to Morocco for our honeymoon. At the time, Ebola was spreading across western Africa in Sierra Leone, Guinea and Liberia. Although these countries are about 3,900 miles from Morocco, further than the distance from Mexico to Canada, many of our friends and family worried about us traveling there.

Others worried about us traveling to a Muslim-majority country. This came from a wide misunderstanding that traveling to any Muslim country as a Westerner was dangerous. We knew that Morocco’s would culture and the religion of its people would play a part in our vacation and planned accordingly. Knowing it would be hot, I planned to dress modestly in long skirts and short sleeves to keep my shoulders covered and my husband planned to wear pants and short sleeves. We also knew that alcohol would likely not be on the menu.

We wanted to visit a number of places and knew that we did not want to drive on our own, so we worked with a tour company to plan a private tour with our own private driver. We didn’t speak the language and didn’t know the rules of the road in Morocco, and didn’t want to spend our honeymoon fighting about directions.

This turned out to be the smartest and one of the most memorable parts of our trip. Driving in Morocco was like nothing we had experienced before. I had been to Costa Rica, where the roads were only suggestions, but this was on another level. There were mountains, motorbikes, bicycles, children, carriages, and so many donkeys to contend with. And without our driver Mohammed we never would have been able to experience all of the beauty Morocco had to offer.

I wrote much more about our trip and what we ultimately learned from our driver in a short essay, “Seeing Through Mohammed’s Eyes.” The essay is now available in a new anthology, Corners: Voices on ChangeThe anthology features more than 20 essays about finding a way through change.

 

Special Offer – Free E-Book

The e-book of Corners: Voices on Change is free for a limited time. Download at no cost until June 4, 2018.

 

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Microwaved Bologna: All You Need for the Perfect Day

When I was young, in grade or middle school, I was asked to write about my perfect day. I remember how wonderful it felt even to consider a day where I could do whatever I wanted and where everything would be great. But instead of dreaming big, maybe imagining myself in my favorite place, like the beach or a water park, I focused on the most mundane details.

Food mostly, if I remember accurately. Specifically, I think I spent the majority of the essay writing about what I would eat for breakfast on this most wonderful of all days. I chose bologna, not the most magical food. I wrote about how I would warm the bologna up in the microwave on a pie plate, because when you do such a thing, bologna transforms, curling up beautifully in a way that was stupefying to me as a child. Inside I would put a piece of American cheese – the kind that comes in the plastic wrap – which would melt into a lake in the middle of my bologna. Then I imagined placing this magnificent creation on a piece of lightly toasted white bread and enjoying quietly it at the kitchen table.

Just as I took an imaginary salty bite, the teacher let us know our time was up, so I never was able to finish creating my perfect day.

Just as I took an imaginary salty bite, the teacher let us know our time was up, so I never was able to finish creating my perfect day. I sometimes wonder what little me would have done with herself for the rest of her perfect day. As I see myself sitting at our long kitchen table, I don’t see anyone else, a rare moment of solitude in my large family. I suppose I imagined, since it was my perfect day, everyone else was busy or would get their days in turn.

Now that I’m older, I have lots of such perfect days. It is any day that isn’t rushed, where I can wake up slowly, drink my coffee, spend the morning reading or on my computer and eat breakfast with my husband. We don’t eat microwaved bologna, but the mood is much the same as the perfect day I imagined when I was a kid. Quiet, slow and relaxed.

I think that’s why people get so excited about summer, which we are thinking about this weekend in the U.S. as it’s a holiday weekend. It gives us a chance to be more like kids. To focus in on the small things. To feel the wind on our skin. To think a little smaller. To feel the earth with our bare feet.

These aren’t the things we normally think about when we think of a perfect day, but they are the things that make a day better. Whatever perfect means to you, here’s wishing you lots of perfect moments in your days.

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Take in the Lilacs While You Can

The lilacs are in bloom. After a winter that felt like it would never end, in the past few weeks, it is as if we have been living in a time-lapse photostream.  A month ago, it was snowing. Then it stopped and there were tiny buds on the trees. Then daffodils, tulips, green grass, magnolia blossoms, and finally lilacs.

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I have been writing about lilacs for more than a decade. I first had an essay published about how the smell of lilacs changed after my dad’s stay in a nursing home. The wipes used to clean up after him in the bathroom were made to smell like lilacs. After he passed away, when I tried to smell the lovely lilacs of spring, their scent had changed. Instead of a natural odor that had once reminded me of a younger version of my dad working in my grandma’s yard, they reminded me of the chemical sickness of the nursing home and a man who had changed after a stroke left his brain garbled.alt=

In time, the true scent of these delicate little buds returned to me, as did the memories of who my dad had been before his brain was injured.  The story was the seed that eventually grew into the memoir I am now working to have published. It tells not only of my dad’s stroke but what that taught me about my own brain tumor a few years before.

The story of the lilacs has stayed with me. I was thinking about my dad again yesterday when I visited our local arboretum. They have dozens of lilac trees and when we opened the car door, the sweet and welcoming fragrance enveloped us. I try to visit every spring since I don’t have lilacs of my own. With these short-lived blooms, I know I must take them in while I can. alt=

Most of the year, lilacs appear no more special than any other bush. In fact, I once heard someone say they didn’t like lilacs because they only flowered for a short time.

It is true, but that doesn’t mean they don’t live in my memory when they are not showing their flowers. I think that’s what amplifies their importance. If I were able to smell lilacs every day, they may not smell so sweet.

 

 

 

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Finding New Meaning in a Misattributed Quote

I was in church once, more than 10 years ago and the priest said this during his homily. “There are two important days in a person’s life: the day you were born and the day you realize why.”

I know it was that long ago because I came home and wrote what he said down with the date. At the time I thought that was a pretty wise saying. It really cut through the clutter. He was a likable enough guy as far as priests go, so I believed that he had come up with the sentiment on his own.

It was one of those sayings that seemed to bring order to the chaos of the world. As if no matter how tough things got, there would be clarity in my life. Though it didn’t make sense at the time, I could look forward to a moment when everything made sense.

It wasn’t until years later, when I heard the saying again, that I went to the Internet to discover just where the quote came from. At the time, according to Google, it was attributed to Mark Twain, and if I wanted, I could copy an image of a blue sky with the words typed over it.

Suddenly it put everything the priest said in a different light.

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Did he know he was plagiarizing one of America’s greatest writers and humorists?*  Was anything real? But when I checked on Quote Investigator, I found a bigger issue. Versions of the saying have been used in homilies and speeches for more than 100 years and have been attributed to a number of people in that time, most famously Twain, though there is no evidence to support that he said it.

So now the saying that once brought me comfort was a lie. If it hadn’t been said by a trusted man (whether that was the priest or Twain) did it still count?

Since the time I heard it a lot had changed in my life. I no longer thought about the big moment when everything would make sense. Slowly over time, things had begun to. It seemed to me now that there were a lot of moments in a person’s life. I wasn’t sure there could only be two.

Having one big moment where you know what everything is about is a pretty tall order. If that works for you, that’s great. But for me, focusing on the little things that matter is more important than wcropped-door-county-2010-052-2.jpgaiting for the big moment when I finally see what it’s all about. You know? Those moments when you really see something or someone? Or when someone really sees you? The things you remember when you really slow down to notice. Even the ones you write down and look back on more than a decade later. Even the ones that help you see how much you’ve changed.

What do you think? Is there a moment in life when we know our purpose? Have you ever re-evaluated something you’ve heard?

 

* according to Wikipedia