There is a Multi-Ring Circus in My Brain.

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There is a multi-ring circus in my brain.

In the Big Top, Breathing is a ringmaster who performs perpetually, whether anyone is in the stands surrendering their awareness or not. It’s not long before the side shows draw me away.

In this tent, memories of when Thurman Munson(1) lost his head.  There are only a few of us present, but we have a good laugh.

In the next tent, the freak show of the future is featured, in which I am in an emergency room (with Ralphie because it is too hot to leave him in the car) where we have rushed to tend to Fletcher who was hit by a car while stubbornly riding his bike to the shore.  Ah, the future. It never disappoints. In my future they let dogs in hospitals. 

It’s back to the Big Top, where Breathing is performing daring feats of….nope, still just breathing. Feel it in your nostrils, feel it in your belly, then wander off again.

Between circus rings, I wonder how I am able to sit in the sun with a sweatshirt on when it is 87 degrees. As long as I am meditating I don’t seem to feel the heat. Weird. Fletcher says he wants a new pillow that is “robust,” which strikes me as an odd description for a pillow.  I do like the word ‘robust’ though, and vow to use it in a sentence today.

“‘Grandma did you do your kegels today?’ I shout.”  These words come to me as a brilliant first line of a short story I discovered I need to write at just this very moment – the only moment that exists, so I should focus on it and be aware of it, my meditation guide(2) tells me.  He tells me I need to befriend my pain at this moment, the only moment that exists, and become intimate with it. He tells me this in a voice that sounds like a chill Woody Allen. Imagine Woody saying the word “intimate” and try not to get creeped out.

In the next ring, the beautiful horse from the farm down the street is cantering around and around and around.  It is dappled gray and fat.  A beautiful woman swings and splits and stands upon it, yet its movement is constant, constant, constant. The rhythm of its canter synchs with my breathing. I wander back over to the Big Top.

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I bring awareness to my breathing and manage to keep it there for more than a nanosecond. Perhaps I should spend more time in the Big Top. My guide insists I am doing great and that this is how it’s supposed to work – no matter what bizarre things go on in my head, no matter who arrives on my brain porch, whether my thoughts include pain or cancer or when I’m going to clean the sand out of my car, I just keep bringing my awareness back to my breathing. Then I notice that the cotton candy machine is in the Big Top so I bring my awareness to that as well.

I refer here to Thurman Munson the stuffed NY Yankees mascot doll, not the crackerjack Yankees catcher that was its namesake, although both had tragic endings.
 2 Jon Kabat-Zinn is a great meditation guide. I’m using this: Mindfulness Meditation for Pain Relief – Guided Practices for Reclaiming Your Body and Your Life
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Cancer Staggered Up My Brain Porch

Cancer staggered up my brain porch during meditation today. I made a decision; not a “quick decision” because cancer was pathetically slow.  It was just some cells trying to glom together and get inside my head.  Unlike death, which I turned away because I didn’t want him rattling around in there and stinking things up (see 3/17/19 post), I let cancer in, knowing that no one in there was going to engage with it, and that it would soon be sitting alone in a corner, crying.  Which is what it deserves really.  Who does it think it is? Who does it think I am? It actually doesn’t even think at all, those pathetic little cells.

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Credit: JOMFP – Some other person’s metastatic lobular breast cancer cells

Cancer’s arrival at my brain porch interrupted some important thoughts.  You might say, What was she doing thinking important thoughts during meditation? Isn’t the idea to keep your mind completely clear?  Well that is true, but I am also in the middle of reading about the placebo effect and how brain neuroplasticity and suggestibility can combine in a powerful way to support healing.   I haven’t yet learned how to actually make that happen, just that it can happen, and I know meditation is a key part so I was jumping the gun. 

I was thinking about pain from post herpetic neuralgia and fibromyalgia. I was affirming that yes, I understand how neuroplasticity works and yes, I am open to suggestion and yes, although I am a science-purist I truly believe that science doesn’t know everything, and science often disses what it doesn’t know, and maybe science will confirm* in 20 years that you can think yourself well, and I don’t want to wait 20 years so I’m going to do it now, thank you very much. 

Cancer struggled up my steps and reminded me that in focusing on these nerve-related issues I am ignoring the elephant in the room – the cancer that might kill me.  Well my answer to that is this: the nerve pain is what is front and center right now. It is bringing me down and to deal with the cancer I need to be up, not down. 

All pain signaling comes from the brain. Today I was focusing my healing energy on telling my brain to calm down. Ssshhhh – nothing to see here….Shingles is gone so, nerves, you can stand down. My activity level is coming back so, nerves, muscles, fascia, you can relax and serve my needs again. I look at it as practice for curing myself of cancer. Those little lonely cells, crying in a corner, won’t stand a chance.

*Obviously this won’t happen until more funding for science comes from sources interested in healing not in making $$$. So it will probably be more than 20 years….

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First Off, Let Me Remind Everyone

First off, let me remind everyone that you can’t control your dreams, so no judging. The only part I remember is walking up to the side of our house where the brick patio is off our kitchen and seeing a black man standing there dressed completely in black – black jeans and black hoodie with the hood up, partly obscuring his face. I immediately assumed it was death coming again to taunt me.  The last time death dropped by he was in his prototypical black robe so I must have just thought, you know, he was changing it up a bit. Then I realized he was assessing how to improve our front garden, was an employee of Mark, our landscaper friend.  I’m sure he was surprised when my dream-self ran up and hugged him and started crying. I probably explained to him that I was glad he was not death….so I’m sure that cleared things up for him. Again, this was a dream people.

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I Had a Few Eureka Moments

I had a few eureka moments the other day.

I was lying in savasana when I suddenly thought: I already do these things.  “These things” are all the things you are supposed to do to avoid getting cancer.  

I’ve previously thought, in anger and frustration: I already do “these things,” god damn mother fucker! 

This time the thought came to me in a different way: I already do “these things!!!” “These things” are the same things that will help me to achieve PFS (progression-free survival). 

I do yoga; I’ve begun to meditate(1); I’ve been to 4 tai chi classes(2) and a dance class(3); I try to draw something every few days, my personal art therapy session(4); I take ashwaghanda(5) (don’t even get me started on other supplements like mushrooms and nutritional yeast); I stopped drinking(6); I eat 99% organic and local plant-based home cooked food(7);  I’ve discovered that I love seaweed salad(8); most days I do a daily 13-hour fast(9); I’m trying to ramp exercise back up(10); I’ve reduced my stress level by at least 50%(11). 

I already do “these things!”  I could do them better, more frequently! I could do them with more intention! Imagine how totally lost I’d feel if I didn’t already do “these things!” I am halfway to nirvana! 

I’ve decided I’m not going to be resentful that I got cancer in spite of taking good care of myself.  It is very possible that I’m still around because of the care that I’ve taken. I like that story better. A lot of what I read about is what you can do to prevent cancer, or prevent recurrence, and I can’t help but think, “What about me?” What can those of us whose horse is already out of the barn do to improve our lot (besides take our chemo pills and shots)? Turns out it is “these things.” Until there is a cure, I’m going to do “these things” with gusto. Though the horse may be out of the barn, I’m going to try to keep it in the paddock.

My second eureka moment was when I realized that I was completely relaxed.  I was in my hammock. Everyone should have a hammock, under a magnificent tree – the sound of leaves rustling never gets old. When was the last time I was this relaxed? Was I ever this relaxed?

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…..Yes I was! Picture 13 year-old me. My horse, Dawn, would automatically stop and stand hipshot at our favorite spot, on a ridge overlooking a big beautiful meadow below.  Dawn always seemed to be competing in some nostril expansion contest, the way she inhaled deeply. I would lay back over her rump and also breathe deeply, watching the leaves dance. Imagine you are stroking the nap of a piece of cream colored velvet fabric. Now imagine that piece of cream colored velvet is warm. Now imagine that warm cream colored velvet moves below your fingers and huffs warm air into your palm.  You have just touched the muzzle of my favorite horse.  The one who relaxed by breathing with me.

Anyway. My moment of pure relaxation was on the Sunday of memorial day weekend.  We had not hosted a giant party the prior day, our annual cook out to kick off summer, as we had not hosted it for the prior five years since my initial diagnosis. It was an event I looked forward to annually, though with some anxiety because I am not by nature an entertainer and the event always felt like I was spinning plates. Until the sun went down, the crowd thinned out and I finally got to sit down and talk to my closest friends. 

I was out on the patio yesterday afternoon at about 6 and said to Fletcher, “The grill would be fired up and table covered with side dishes at about this time. I miss it! We should have had the party!” Instead, we sliced oranges into our San Pellegrino and ate vintage curry we found in the refrigerator – zero stress (if you don’t count worrying about food poisoning.) But in that hammock I must say that I was glad to not be picking cups out of the grass, dumping drunk bees out of near-empty beer bottles. Maybe next year. I am so much smarter now.  I’d be able to fool myself into thinking that hosting 50 people wouldn’t be stressful.

1 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6282865/

2 https://www.mdanderson.org/publications/cancerwise/tai-chi-healing-from-the-inside-out.h00-158598468.html

3 https://www.ncbi.nlm.nih.gov/pubmed/25730591 AND http://www.sciencedirect.com/science/article/pii/S0197455612000998

4 https://www.ncbi.nlm.nih.gov/pubmed/19619378

5 https://integrativeonc.org/news/sio-news/178-herb-of-the-month-ashwagandha 

6 https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)31310-2/fulltext 

7 https://nutritionfacts.org/video/which-dietary-factors-affect-breast-cancer-most/  AND https://www.uab.edu/news/health/item/8798-plant-based-diet-converts-breast-cancer-in-mice-from-lethal-to-treatable-form 

8 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3651528/ 

9 https://www.ncbi.nlm.nih.gov/pubmed/27032109

10 Re exercise, I love this image: “…. Increased aerobic fitness may counteract this communication by increasing the exosomal communication coming from healthy skeletal muscle cells, and since there are so many more skeletal muscle cells compared to cancer cells, the effect may be akin to a large crowd drowning out the speech of a small but vocal hate group…..”

11 https://www.nature.com/articles/s41586-019-1019-4

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Random Things

Random things I thought I’d share…..

My CT results look great, and all 80+ cancer-related genetic mutations that they looked for in my genome were negative, including BRCA. Somatic results (tests on my tumor) aren’t back yet.

Living one day at a time, one hour at a time, is back. Because of the pain, not so much the cancer.  Pain management is an occupation.  It makes me forget I have cancer. Then the meds kick in and I remember. But I also remember that I have to clean the rabbit cage, gather tax info, do yoga and write something. Chop wood, carry water.

Those parts of my body that I was told will never regain feeling due to nerve damage during mastectomy & node removal? No one told the pain. Interesting.

There is a huge difference between these two side effects: May cause drowsiness and May cause fatigue.  Drowsiness means that instead of falling asleep during a super interesting TV show at exactly 9:20 pm I will fall asleep at 8:30.  Fatigue is something different all together.  Fatigue is sitting down in the shower before you fall down.  Fatigue is sitting down in front of the stove while you are cooking, and having trouble explaining why you are sitting on the kitchen floor.  It is trying not to drool. You should not try to take a walk while experiencing fatigue or this will happen:

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Never, never take Oxycontin.  I am going to ask them to put that in my allergy list, although I don’t think what I experienced was an allergy. And it wasn’t the fatigue I’d experienced with the prior drug. I would characterize it as a bad trip. I was prepared this time for the constipation and started a “bowel regimen” right away, so that wasn’t the issue.  And I only took 2 doses before I was switched to two different drugs, which each listed drowsiness as a side effect. (I worried: do two drowsies equal one fatigue? The answer is no.) With all due respect to those dealing with opioid addition, I could not wrap my head around how anyone could become addicted to that stuff. It is evil. I will never take it again.

We’re gonna need a bigger refrigerator. This is half of a winter share at our CSA, mind you. Imagine what summer will bring. “Greens management” is now a thing added to my To Do List.

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Finally, on a daily basis my honeybun tries his best to make sure we consume all the greens we possibly can, as well as all the blueberries within a 5 mile radius. He just brought me this:

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Bon appetite!

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Wasp Got Her Tongue

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Wasp Got Her Tongue was published in Memorial Sloan-Kettering’s 2019 Visible Ink Anthology, and was selected for live performance at the 11th Annual showcase of original works written by MSK patients, held at the Kaye Playhouse at Hunter College on 3/18/19.  Here is a link to the performance of my piece: WaspGotHerTongue (Edited slightly from previously posted version)

Wasp Got Her Tongue

By Linda Grayson

My mother tells me, There was a bird on the lam.

I’m thinking, Why was a bird hiding from the authorities? What did he do? Or maybe a bird was hitching a ride on an actual lamb, suddenly innocent and childish. She glances out the window, throws her hands in the air. She starts to laugh, so I do too.  Either scenario is funny, really. Until she accuses me of laughing at her and her frustration becomes palpable. In half a minute, Limb. Oh. There was a bird on the limb.

It was spring’s first robber, she says.

Here we go again.

A wasp emerges from my mother’s mouth.  I hear its wings flutter against her palate, then chatter against her teeth as she tries to hold it in, knowing it is wrong. Its pointy feet walk across her tongue and she must say it. The thin crepe of ancient skin covering her arms, like a wasp’s paper nest, foreshadows its emergence. A wisp was what she wanted, a whisper. The soft relay of a granddaughter’s wish, not pointy feet.  Not the lawless discourse of old age. Not the involuntary sputtering of random words.

I point out that 90 percent of her words are ones she intended. Citing statistics is not helpful. Logic is out of her reach. She only hears what she did not intend to say. Most of the letters are usually right, I say.  Still she is irked and beaten in equal measure.

One morning, when I was three years old, I awoke to a horrible smell.  It is my earliest memory. In a rented house at the Jersey shore, the only vacation we ever took, I called and she came.  What is that smell? Oh dear.  It was me.  All those blueberries I’d eaten while we watched the crabs spar on the bluestone patio reappeared in my pants in the morning.  I was hosed down and the blueberries were off limits. Crab I could eat, but no more blueberries. Mom’s request that I Take the garbage to the crab dredges up that memory.  She looks defeated.

My words.  I can’t find my words.  I talk nonsense.

It’s okay, I say.  We can usually figure out what you mean. And even if we can’t, you say it right a few minutes later and we all have a good laugh.

When I was 5 we made a mini snowman on the picnic table.  Just she and I.  I was special.  It was delightful.

When I was 7 she marched me down the street and made me apologize to another child for something I didn’t do.  I still haven’t forgiven her.

When I was 11 she helped me complete my epic science project, a bench-scale desalinization plant, decades before the term climate change was coined, well before it would occur to anyone that you might need to desalinate seawater. We finished at 2 a.m. on a school night. I recall it being fun, but as a parent I can’t imagine how that memory could possibly be right.

When I was 20 she left me alone to become myself.  Like all parents should.

Don’t sit on the beetle!

I freeze in mid squat. A second later comes, Needle! Needle! 

I don’t want to sit on a beetle or a knitting needle, so it’s all good, I tell her. You’re becoming a comedian in your old age! Don’t let the wrong word stop you – you’ll be a teller of fantastical stories!

As a diversion I suggest the piano and she plays me impeccable Chopin.  I ask her to play her signature piece, Mozart’s Rondo Alla Turca but, with a laugh, she claims to have lost that ability in 1917.  I’m pretty sure she means 1970.

She always said just the right thing, using all the right words (except of course during “the apology incident” noted above). She also knew when to refrain and say nothing at all, her silence a strategic peace-keeping of sorts.  A golden rule I learned from her, which has served me well: If you can’t say something nice about someone, don’t say anything at all. My personal mantra derives from that sentiment: plant kindness, gather love.

I figure I have about 35 years before a wasp flies out of my mouth unintended. Or maybe a beetle will emerge, prying open my lips with its long proboscis, like my mother’s shiny gold knitting needle.  It will evade the first robber of spring, who would surely try to snatch its iridescent wings. The beetle and the crab, fast friends in search of a blueberry patch, will meet a whispering wasp on a lamb on the lam!

When my random words start to fly I will tell the best stories.

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I Was Just Sitting Alone On My Brain-Porch

I was just sitting alone on my brain-porch when death sat down beside me. 

My brain-porch is a solitary place where I figuratively sit during meditation. I look out on fields or woods, whatever landscape I conjure, and when any thought approaches I send it up the steps and into my brain. I don’t engage with the thought, as that is against the rules that are intended to keep my mind empty, and if I did so I wouldn’t be able to welcome the next thought like a good hostess.  So far this strategy has aided my mediation practice.

Although I know I shouldn’t, I’ve adorned my brain-porch with yellow sandstone steps that absorb the sun and a cedar front door.  On each side pink mandevillas grow in cobalt blue ceramic pots. Although it is always sunny on my imaginary porch, I eschew sunscreen.

During a recent meditation session, the thought that I will never participate in another triathlon approached. The idea that I will be lucky to do any of these activities alone, much less back-to-back, came racing toward me. I acknowledged a wave of sadness then I sent my friends Swimming, Biking and Running up the steps. Running winked at me, knowing she is my favorite; Biking looked coy and took comfort in Fletcher’s influence; Swimming started to whimper, thinking about the sale of the Hill Top Swim Club and the summer closure of Peddie Pool for maintenance. That dirty lake is no consolation to her given my fragile immune system.  

Then death approached and when I blocked the steps he sat down so close his black robe brushed my arm. He was mute and seemed moronic.  He smelled overwhelmingly of fuel oil, in case you were wondering.  I pushed him sideways and he fell off the porch face first into the dirt where the spring flowers have started to emerge.  Death lay in the dirt for awhile, then slowly got up and brushed off some but not all of the dirt.  He sat down again, this time not so close. After a few minutes he wandered away, leaving a stain on my sandstone step. What an asshole.

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It’s Not Often That Words Fail Me

It’s not often that words fail me. Usually I blather on. Now I can blather on about some things. Like the alphabet soup that describes my cancer’s characteristics. Like the chemo didn’t work vs worked then stopped working.  Like how do you monitor progression of a slow-growing cancer that doesn’t light up a PET scan. Like where to whack that mole next. Like whether it was the surgery itself that was hard or the blood clots that made it hard or the ileus that made it hard. (I don’t say it out loud because it sounds like bragging, but it shouldn’t have been so hard for me given my level of fitness, so WTF!)

But I have no words for the truth. I’ve spent the past month immersed in metastatic breast cancer research information, progression-free survival and prognosis stats. These peer-reviewed papers to which I’ve limited myself make me want to scream “fake news!” because they say I’m going to die from breast cancer. Although what I read is pretty dire, I don’t believe this will kill me. Other than the current status of my lungs and small bowel, I’m feeling pretty invincible.

I know that just because I am skeptical of something doesn’t mean it might not be true. Like the power of reiki, selenite, walking barefoot. (Except god, that shit’s not true). I’ve always felt the cancer would be back and it is such a burden being right all the time. So annoying. 

Or maybe not annoying – I don’t feel like its going to kill me, so being right this time would be awesome. 

And I have no words for my feelings. Do I even feel this yet? I think about how anyone can die suddenly at any time and it is equally tragic to someone dying slowly of a disease (even if that someone is me).  Of how any experience, even suffering (and even if that sufferer is me), can be regarded as one worth going through because, hey, its something. (I better brush up on my Zen because I don’t think “suffering – hey, its something” is part of the mantra.) Or thoughts about not being here disguised as vague metaphors, like I left a party early. (Where’d Linda go? She loved this Elvis Costello song!)  Then I think about Fletcher eating dinner alone. Yeah, I felt that.

But I only need to live until a cure is discovered. I learned that metastatic breast cancer research is the least funded of all breast cancer research, which makes no sense because it is the only kind that kills you. My doctor says I have years; said she’d be lying if she said how many. In other words she doesn’t know, everyone is different. But she has a patient in my same boat, breast cancer metastasized to ovaries and on my same meds, who has made it 8 years.

So I’m still trying to wrap my head around the fact that I now have a disease that must be managed as a chronic disease, and that statistics say is going to kill me. But I love statistics! It was one of my favorite classes. “Lies, damned lies, and statistics!” I know the end of that statistical curve stretches far toward the future.  I intend to be at that far end and am on a quest to find information about the characteristics of people with maximum progression-free survival – those who defy the odds. Going to try to stretch those years into decades.

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PS:  It was nearly impossible to find a simple graph reflecting survival stats because cancer is so complicated. Even though the scale on this one is whacky and it is not clear if diagnosis means initial or metastasis (from reading the abstract I think it is initial), I like this best because I’m the blue line on top!

Figure credit: http://cebp.aacrjournals.org/content/27/6/619.figures-only

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“Now is the time to show your mettle.”

 

“Now is the time to show your mettle.”

According to an article in Sunday’s NY Times, this is what Heather Lee’s husband told her on his deathbed 23 years ago. At 92 years old she now holds five world records and eight Australian ones for racewalking. Now that’s some mettle! When I was first diagnosed with breast cancer “be the buffalo” resonated with me (see 5/4/14 post). This time, I intend to “show my mettle.”

Thanks to a case of rash-less shingles (who knew there was such a thing?), followed by numerous scans seeking answers to stealth-shingles’ periodic abdominal tingling and squeezing, the breast cancer was found on my ovaries.  Yes, I have the world’s mildest case of shingles to thank for early detection of breast cancer metastasized to my ovaries. I love shingles!!! Throw in some post-surgical complications including blood clots in my lungs and ileus in my small bowel and you get an idea of the medical adventures of the past few weeks.  On Thursday I start treatment, which involves slow injections of thick meds into each butt cheek and a pill that would cost $11,000/month if I didn’t have insurance. Every day I encounter the dissonance of being pissed at having cancer and being thankful about so many things, like insurance, my husband, my comfy bed, modern medicine and, unexpectedly, even shingles. I have a little fantasy that the butt injections, in addition to plugging up the estrogen receptors on those cancer cells, will plump out my much diminished derrière.

I looked for images of “mettle” for this post, seeking one that would reflect the definition of the word: a person’s ability to cope well with difficulties or to face a demanding situation in a spirited and resilient way.  But I found mostly images that can only be explained by an assumption that people apparently don’t know how to spell the word “metal.”  So, I opted for this very appropriate image of stinging nettle that somehow portrays both the mettle of nettle and what I have to say to cancer.

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Photo courtesy of the blog Ohgodmywifeisgerman.com

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One Minute of Something

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One minute of something. Only about 100-150 words.  Even I could do that. No news is good news is a lie I told myself until the bad news arrived: Brevity politely told me my submission for the One-Minute Memoir Podcast was rejected.  A few months later I let the email announcing the winners’ podcast just sit there for a few days, unopened.

Although I am by nature the most upbeat and optimistic person you’ve never met, today I am in a funk. I am a frustrated parent after an argument by text with my adult daughter. It upset me so much I decided not to go to the beach and instead bought toilet paper at BJs, dealt with the cat litter and did other things to punish myself. By mid afternoon it was too blazing hot to go outside, the day was wasted, and I was annoyed. So I decided to make my bad day worse, waste more time, by listening to the podcast. Rub it in that there are much better writers than I. Kick myself when I’m down. I secretly hoped they would all be bad, revealing Brevity as poor judges, and also hoped listening would reveal, without too much pain, exactly what was wrong with my submission.

In the first half of the podcast, host Alison described the process, the submissions and the factors considered in choosing the finalists. Of course they eliminated ones that weren’t memoirs, one that were poorly written, ones that didn’t move the reader. I brought up my memoir while I listened and confirmed that, in theory, I was still in the running. So far, so good. Then, the nitty-gritty: bad ending sentences. Confusing beginning sentences. Some needed to just be tweaked. (Did you mean mine?) Some needed to be trashed. (Was that mine???) What about my piece? I had to know!  My husband interrupted and I paused the podcast.

When I resumed, the reading of the winners’ submissions was just beginning. I listened to them all.

Oh. Now I see.  Hand to forehead. I Google the word memoir: “…..selected anecdotes or memories from your life to support a theme and make a point.” No wonder I had so much trouble writing that piece – I wrote a 150-word autobiography. So today I find that not only am I a bad parent but also a bad writer and just a dope.  (But seriously, you try writing an autobiography in 150-words. Go ahead, try it.) And I thought today couldn’t get any worse. I’m not only down and kicked, but somehow standing on my own neck.

A few bright side items: Because I didn’t go to the beach I am not sunburned; I am in air conditioning; I have ample toilet paper; I wrote this, for what its worth. But my daughter just texted that she has embarked on her three-hour drive to my house. So we can argue in person. Great. Seems like listening to that podcast of some really good writing will turn out to be the highlight of my day. Thanks Brevity. (P.S. Please tell me: if the contest had been One-Minute Autobiography, would I have nailed it?)

 

 

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