My Colon Exploded in My Surgeon's Hands

On May 1, 2015, my colon exploded.  Literally blew the hell up in my surgeon's hands. 

I had been terribly ill for months.  My gut was sick, and the needs of Dear Husband, who requires constant supervision and care, were exhausting me.  I ate well but grew weaker and weaker.  I dropped all my community involvement, one organization at a time.  The last thing to go was writing this blog.

The gut pain became so great that I thought I had yet another kidney stone.  My PCP sent me to a urologist (an urologist???).  He ordered an MRI and then went out of town.  His surgeon colleague read the MRI and sent word that I needed surgery for diverticulitis.

I asked my PCP's office for a referral to the surgeon.  The nurse told me that I didn't need surgery, that my diverticulitis could be cured by antibiotics, so she had my PCP order yet another round.  I asked why the surgeon would say I needed surgery if I didn't.  She said, "That's what surgeons do."

I finished the antibiotics.  And I got sicker. 

I went to the local urgent care clinic because it was a Friday and my PCP is gone on Friday.  All the toilets at the clinic were filled up, shaken together, and running over down the hallways, which was causing great consternation to the nursing staff. A nurse stood at the door and turned patients away.  She told me to go to the ER.  After six hours in the ER and another MRI, the doctor sent me home with more antibiotics.

Ten days later, still desperately ill, I went back to my PCP on a Wednesday.  He wasn't in.  The office sent me to the ER.  The ER MRI'ed me and offered to admit me to the hospital.  I asked the ER doctor whether he would be admitted if he were I.  He said, "No," so I declined. 

The next day, the hospital's gastroenterologist reviewed my MRI.  Her office called and told me to go to the ER and be admitted to the hospital.  I needed IV antibiotics for raging antibiotic-resistant diverticulitis.

I spent six days on multiple types of antibiotics, even having an infectious disease specialist become one of my consults because of the intransigence of my infection.  The problem was exacerbated by the fact that I am severely allergic to penicillin and Keflex.  I developed a localized allergic reaction to Levaquin while I was there.  Watching my veins turn red as the Levaquin worked its way up my forearm was both fascinating and frightening.  The nurse shot me full of Benedryl and we watched the arm turn white again.  Continued the Levaquin paired with Benedryl.  And continued trying a bunch of other antibiotics that I can't remember the names of.

After six days, I went home weak, but better.  The gastroenterologist and the surgeon said my sigmoid colon needed to be removed, but I needed to get my gut calmed down before surgery.  The plan was to do surgery in three to six months; six was ideal.  A quarter of the people who have colon surgery during a severe diverticulitis attack die during their hospitalization.  You don't want to operate on a sick colon, but a healthy one.  Ideally, one that's been healthy for six months.

Two days after I returned home, I fell down the stairs and broke my ankle. 

Back to the ER, this time in an ambulance because my husband can't drive.

Two weeks later on a Sunday, my gut was so sick that I knew I was in trouble.  I wasn't supposed to have surgery for a minimum of three months of uninfected colon, so I went back to the ER.  More oral antibiotics.  Back home.  Weak and visibly losing my life force.  Pretty sure I was dying.  Which I was.

The surgeon's office called me the next day and said we were moving the surgery up.  The date was set for three days later, even with the risks of a raging infection.  I picked up the drugs to clean out my colon, and when I started on them I became so ill that I knew I was in trouble.  I started to cry and called the surgeon's nurse.  After calls back and forth, she said, "Go admit yourself through the ER.  We will have the papers ready when you get there."

Fifth trip to the ER.  By ambulance.  I was too sick to drive, and Dear Husband can't.  Admission, IV antibiotics. 

Next morning, surgery.  Supposed to be one hour.

The surgeon removed my sigmoid colon and attached my descending colon to my rectum.  He inflated it to ensure that it had no leaks. 

That's when my descending colon exploded. 

Literally exploded. 

Blew the hell up.

Surgeon said he'd never experienced anything like it in his 22 years as a surgeon.  Never even heard of it happening.  He said, "I had one minute to decide what to do.  I could either give you a colostomy bag that I might never be able to reverse, or I could take out your entire colon and attach your small intestine to your rectum.  That's what I would have wanted if I had been lying on the table, so that's what I did."

I asked this unemotional man later what he felt at The Moment.  He said, "They teach you in school that surgery is 99% boring procedure and 1% sheer terror.  That moment was terror."

Then, unemotional again, he sliced open my belly right under my rib cage to match the slice he'd initially made right above my pubic bone.  First he peritoneal lavaged me.  Then he surgically disemboweled me.  Literally dis-em-boweled me.

Everything in my abdomen was stuck to everything else from the years of infection in my gut, as well as from my previous surgeries and recurrent UTIs from kidney stones. In places where my colon should have been two inches in diameter, it was five due to the current infection and previous scarring.  The surgeon had to meticulously detach the hideous, seething colon from my other abdominal structures, and a one hour surgery became five.  The hospital had to cancel the rest of his day's surgeries.

I was in the hospital for eleven days, much of which I can't remember because I was so close to death.  Part of the problem was that I was acutely malnourished since my body hadn't been able to absorb any protein for God knows how long.  I received multiple pure-protein IV drips, and as I understand it, four packed-red-blood-cell transfusions, which is the equivalent of eight regular red-blood-cell transfusions. 

My surgeon wanted me to go straight downstairs into in-hospital rehab for three weeks because I was so ill.  He said, "You're not strong enough to go home.  We need to build your body back up. You can't take care of yourself, much less your husband." 

I will not go into all the details about why I had to go home instead of in-hospital rehab, but suffice it to say that the journey has been long and difficult.  The gastroenterologist said it would take a year for me to be well again.  She's right.

I've learned to live with diarrhea eight to ten times a day, but at least I have no pain with it.  I will never have colon cancer.  I will never have another attack of diverticulitis.  I will never have to have another goddam colonoscopy.  I can eat popcorn, tomato seeds, and strawberries.  And no one can EVER tell me, "You're full of shit," because I can provide medical documentation that I am not.

So I here I am, such as I am.  A significant portion of my brain is gone from my golf-ball sized meningioma; the hangy-down-thing in the back of my throat is gone because it was 250% too large and choking me; my adenoids and tonsils are gone from chronic infection; my uterus and cervix are gone from endometriosis; my gall bladder is gone from a near rupture; the appendix went as a freebie with the gall bladder; a third of my rectum is gone from maceration and was rebuilt from colon tissue twenty years ago when I still had a colon; and now my colon is gone.  As my junior-high-band-director dad says, imitating the Palace Guard skit from the old Carol Burnett Show, "She's HALLOW!"

So that's where I've been since my last blog post.  Spending hours a day having diarrhea.  Going to doctors.  Coming to understand the finer points of toilet paper and baby wipes.  Developing an appreciation for Boudreaux's Butt Paste on my poor, sore bottom.

I'm not well yet.  I have another five months before my recovery year is up.  But I'm back writing again, and I'm starting to play my clarinet with my band friends again.  So I'm healing.  And that's a good thing.

Rubber Bands and Melted Butter

I have been thinking about rubber bands and melted butter. 

I started thinking about rubber bands when my dad told me, “I am cleaning out my file cabinets, and I need heavy-duty rubber bands.  You can’t buy heavy-duty rubber bands in this town.”  Dad lives in Tucumcari (New Mexico) with 5,362 other people.  Tucumcari is not to be confused with Tumacacori (Arizona), population 393.

Many people do confuse Tucumcari with Tumacacori.  I know this because a man, having learned that my dad lives in Tucumcari, told me that he’d visited the National Historical Park there.  I told him that I was pretty sure that Tucumcari didn’t have a national historical park.  He said I was wrong because he clearly remembered going to the hot springs there. 

I asked my dad if a national historical park and a hot springs I didn’t know about had sprung up in Tucumcari.  He said, “No.”

Then he told me about Tumacacori because several people over the years have tried to convince him that Tucumcari had a national historical park and a hot springs.  My dad is pretty stubborn, so you just as well forget about trying to convince him that he that he’s somehow overlooked a national park and a hot springs in a town of 5,363 where he’s lived for forty years.

So that springs me back to where I started: rubber bands.

I thought I would try to be a dutiful daughter and Amazon dad some rubber bands.  (I may be the first person to verbify Amazon.)  So I searched Amazon for rubber bands. 

Good grief!  I had no idea that rubber-band-buying was so complicated.  Postal-approved rubber bands are #64.  Did Dad need his rubber bands to be approved by the post office?

The most popular rubber bands are #19 and 33.  I was pretty sure that Dad didn’t give two hoots in hell about whether his rubber bands were popular.

I discovered that regular rubber bands come in sizes ranging from 7/8 X 1/16 inch to 7 X 5/8 inches.  That doesn’t include 112-inch-long rubber bands for bundling pallets.  I didn’t even know that people bundled pallets with rubber bands.  I can’t imagine why anyone would want to. 

I learned that you can buy rubber bands that are latex-free.   You can buy them in an assortment of primary colors.  You can buy them in small packages of a dozen or in big boxes of thousands.  You can buy them in handy Kleenex-type boxes so they pop out one after the other. 

Best of all, you can buy them in balls.  I’ve always wanted a ball of rubber bands.  I thought about Amazoning myself one just for the fun of it. 

I wondered whether the guy whose job is making rubber band balls would be 1) a fun guy to hang out with or 2) really, really anal. 

I learned that people do strange things with rubber bands, like Joel Waul, who holds the world's record for the largest ball of rubber bands: an 8-foot-tall, four-and-a-half-ton ball of 700,000 rubber bands.  He sold it to Ripley's Believe It or Not for a ton of money.  Believe it or not.

 

Some other things people do with rubber bands are even stranger. 

 

 

I had forgotten that my home of Hot Springs, Arkansas is home to Alliance Rubber Company (ARC), which makes rubber bands, but I was reminded of it as I was googling.  I learned that ARC is third-generation family-owned and the current owner is a woman.  I learned that ARC was one of two companies to win the US Department of Commerce’s Excellence in Innovation Award recently, and they are civic minded.  They ask people to Buy American by spending one additional dollar per day on American-made goods.  Maybe on their rubber bands.

I learned that ARC makes ergonomically-correct rubber bands.  I never knew that rubber bands could be ergonomically incorrect.

The only picture of the owner of ARC showed her sitting at a table in Nova Scotia with a live lobster. She was pointing to the big rubber bands on its claws.  She said the lobster was one of her favorite customers, Lawrence the Lobster. 

I’d bet five bucks that Lawrence the Lobster wouldn’t return the warm sentiment.  I’m pretty sure that if he could get loose from her rubber bands, he’d pinch her all the way from Nova Scotia to Tucumcari, where she ought to be civic-minded enough to send a ball of rubber bands since you can’t buy them there.  Or maybe he would pinch her all the way to Tumacacori, where she could visit the National Historic Park and treat him to a dip in the hot springs.  And then some melted butter.

The Most Important Question

Last week, Mr. Wilson, my like-a-dad-to-me-junior-high-school-band-director, said, “I was wondering this morning what people would say if you asked them what the most important question was that anyone ever asked them.”

“I know what your question was,” I said.

“Yep,” he said.  “My mother handed me my brother’s old horn and said, ‘Think you’d like to try to learn to play this trumpet and be in the band?’”

“Changed your life,” I said. 

“Yep,” he said.

He took that proffered trumpet, joined the band, and learned to play the devil out of that old horn.

Mr. Wilson’s mother’s question gave him friends he would have never otherwise met, a sense of belonging to something greater than himself, and a band director who became a father to him just like he became a father to me. 

Her question gave him direction to his life, a career he loved, an avocation as well as a vocation, and a way to serve. 

Her question led him to a position of leadership in his faith community: at almost 80, he’s still the Cantor and Director of Music at his church.

Her question even led him to his beloved wife of more than fifty years (a cute little bassoon player who became mother to his seven musical children).

Because he became a composer and arranger, the question that his mother asked Mr. Wilson lives on; both of the bands I play in have performed his compositions this year. 

Because he is a teacher, the question that his mother asked him lives on: he taught music to countless youngsters, a gift that has enriched the tapestries of their lives. 

Because he is a band director, the question that his mother asked him lives on; a thousand students, of whom I am one, grew up to be who they are in part because of who he taught them to be in lessons learned in the band hall, on the marching field, and hanging around in his office after school. 

So what’s the most important question anyone ever asked you? 

I don’t know what the most important question is that anyone ever asked me, but I do know this: the most important question that anyone ever asked my like-a-dad-to-me-junior-high-school band director- Think you’d like to learn to play this trumpet and be in the band?- turned out to be a question that changed my life and made me who I am today.

Thanks, Mr. Wilson’s mom.  We never met, but your question to your son changed my life.

3- Transition to College for Students on the Autism Spectrum: Don't Skip Class

A parent told me, “My child with Asperger’s has tunnel vision.  He can only see what’s of interest to him at the moment.  The rest of the world doesn’t exist.”  Indeed, the term tunnel vision has been applied to people on the Autism spectrum since Lovaas first used it in 1971.

Keeping in mind the caveat that My Young Traveler who has ASD taught me, “When you know one person with autism, you know ONE PERSON with autism,” I offer what seems like an obvious piece of critical advice to students with ASD who are preparing for post-secondary education.

Never skip a college class.  Not a lecture.  Not a lab. Not a field experience.  JUST. GO. TO. CLASS.

This advice sounds so obvious as to be ridiculous.  But it needs to be said because when our students with ASDs failed their college courses, lack of ability was seldom the reason.  Skipping class often was. 

We never expected that. 

Sometimes one of our students didn’t arrive at campus until after the first day of class and thereby started off in the academic hole, missing the course overview, the professor’s syllabus review, the reading assignment due for the next class day, and a shot at choosing a good seat to reduce potential student-specific distractions (air vent noise, window glare, open door distractions). 

Some students started skipping class the very first week.  Maybe the freedom of sleeping in with no parent to enforce getting to class was irresistible.  Maybe the anxiety of going to a first class where one didn’t know what to expect was the reason.  Or maybe the anxiety of failing to read the assignment given on Monday for Wednesday’s class caused the absence.

Sometimes students skipped class because they were upset about a personal problem.  Sometimes they skipped one class to finish the homework for another class.  Sometimes they hadn’t awakened early enough to have breakfast, so they opted to go eat instead of go to class.  Sometimes they were having such fun with their new friends that they didn’t want to leave the camaraderie.  None of these choices had a good outcome. 

Missing a class the first time seemed to be a watershed moment.  We found that once a student missed her first class, her attendance often cascaded downhill.  Skipping the next class was easier; attending, harder.  A professor told us, “Your freshman is a genius.  Her comments are like those of a graduate student.  But she’s already missed half the classes during the first three weeks, and I can’t allow her to continue.”

So I offer some advice.

1)    Don’t schedule classes before noon.

2)    Try an online class, but don’t fall behind. 

3)    Live at home so your parents can help you stay accountable for attending class.

4)    Go to class even if you haven’t completed the homework.

5)    Go to class even if you don’t feel like it.

6)    Go to class even if you don’t like the instructor.

7)    JUST. GO. TO. CLASS.  PERIOD.

 

 

Collecting Lexical Memorabilia

I own ten globes, including a chinoiserie, a gemstone, and an astronomical night sky globe.  In order to call yourself a collector of something, you must have at least three members of that class of items and then must study, organize, display, and enjoy discussing them.  I meet that criteria, so I can call myself a collector of globes.

I collect dog art.  I have framed prints of dogs, paintings of dogs, sculptures of dogs, books about dogs, and stuffed dogs.  I have two real dogs, Old Lady Dog Callie and Great Big Baby Dog Woodrow, but they don’t count. 

I do not own this painting.  It's by Charles Burton Barber, titled Special Pleader, and costs about a million dollars.  My dad loved it and had a framed postcard of it on the wall of his bedroom that Mom said was his favorite picture.  After he and Mom died, I didn't want many things from the estate, but I wanted this framed postcard.  So I took it. 

I have a music collection: some framed and unframed originals of my like-a-dad-to-me junior-high-school band director's manuscripts; twenty or thirty books about music; odds and ends of sheet music; a plastic bust of Beethoven I bought for 50 cents at a thrift shop; five harmonicas; a clarinet I play almost daily; a saxophone I don't; and a euphonium that I share with my brother but haven't a clue how to play.

I have a wall-to-wall custom-made bookshelf in my library, and I probably have 500 books on it that I study, organize, display, and like to talk about, so I'm a book collector.  I have sections for books on music; art; dogs; history; writing; fantasy; Scotland and England; Episcopaliana; children’s picture books; reference books; books I have written; and old books handed down to me.  I have a book of Plutarch’s essays that’s 200 years old.  And I have a framed single page from a Scottish Episcopal Prayer Book from 1635. 

This is one of the books I wrote.  If you're a secondary teacher, buy it.  I get a 10% royalty.  While that won't buy me a cup of coffee at Starbucks, it will buy me a cup at one of the locally-owned restaurants I frequent.

But my favorite collection is my collection (sic) of lexical memorabilia.  Words are the best thing to collect.  You don't have to give up one cubic millimeter of space in your house for them.  You don't have to insure them, or dust them, or worry about the dog knocking them off a table and breaking them.  You can discuss them endlessly.  They tell a story, either in isolation or combined in infinite ways.   They are free.  You can share them with your friends without losing them.  And they are both beautiful and useful.

You can collect words that already exist: alluring words like laurel, whimsy, or amber; delightful words like pooch, draconian, or limerence; funny words like whippersnapper, vocabularian, or adoxography; or words for things you didn’t know had names, like glabella (the space between your eyebrows), mizzle (a misty drizzling rain), cornicione (the outer part of the crust on a pizza), or barm (the foam on a beer).

Or you can make up words that need to be made up, like words my dad and I have been making up for 50 years, words like interminabominable (time that seems to pass so slowly while you’re waiting for something you’re looking forward to that you think you might die); panduckulation (the act of an aquatic bird stretching its wings); almostest (the superlative state of being almost), or eggelegant (an adjective referring to a gorgeous omelet).

Ergo, I urge you to consider collecting words if you do not already do so.  I’ll give you three of my favorites: ubiquitous, egregious, and platypus.  

Okay, fair's fair.  Now you give me three of yours...

...  ... ... ... ...

I'M WAITING.

 

 

 

Lessons My Band Director Taught Me: #3 Grow a Pair

Before the fall of my eighth grade year, I believed in a lot of principles that I didn't have the courage to do anything about.  My Just-an-Old-Country-Lawyer father was committed to civil rights, and he taught me and my brother to value justice for ALL people. But he didn't teach me how to put those principles into practice. 

I don't know whether or not our father taught my brother how to actually stand up for what he believed in, but he didn't teach me how to, perhaps because I was a girl.  Girls were supposed to be seen and not heard.  Girls were supposed to be nice and not make waves.  I know this because my mother told me so.  Repeatedly.

So until the fall of my eighth grade year, I was nice.  I had principles to which I was committed, but I lacked the know how- or the courage- to do anything about them.

Then came The Day That Everything Changed.

My junior high band director, Mr. Phillip Wilson, had reserved the football field for first period so we could practice our half-time show for the game that night.  The rest of the week, we practiced on the old marching practice field north of the football field.  But we always practiced on the football field on game day.

When we marched out to the field, we were met by a large PE class with their fearsome teacher and monstrous student teacher.  Mr. Wilson politely told the PE teachers that we had reserved the field for that morning.  The fearsome teacher refused to leave and told the students not to give up the field to the band.

Mr. Wilson stormed back across the field to us like MacArthur, Montgomery, Marshall, and Patton rolled into one. Face crimson with the little patches of white he got when he was mightily riled, he shouted, "People, you are the Marshall Junior High School Band!  This field is reserved for you this morning.  Those people refuse to yield it to us.  This field is ours, and we are going to take it!"

We woodwind players stared wide-eyed.  The brass players squared their shoulders.  The drummers whispered, "Hot Damn!" 

Then General Wilson said, "People, you are to march straight ahead.  Do not look to the right or left.  Do not step to the right or left.  If those people don't move, you are NOT going to march around them.  You are going to march right over them.  Do you understand me?"

We understood.

Mr.Wilson signaled the drum major who counted us off.  Then the snare drums started to roll, the bass drum shook the earth, the brasses straightened the pipes, and we woodwinds shrieked until we split the heavens. The irresistible force began marching toward the immovable object. 

In an instant, I understood what I was part of.  My fear evaporated, and I realized that this was a watershed moment for me.  I not only believed in justice, but I was going to act on that belief for the first time. I was going to stand shoulder to shoulder with my band of brothers and sisters and confront the enemy.  I was brave.

As we marched across the field, the PE students scattered, and even the fierce old PE teacher headed for the sidelines.  But the monstrous, murder-in-the-eyes student teacher wasn't going to move and squared off with us. So our feisty little trombone player followed orders and plowed right into that immovable object.  Then he stomped hard on the foot that was in his path and kept moving forward.  He was the hero of the hour.

That day, Mr. Wilson taught the entire band that we could fight injustice.  That we could be brave. 

That moment was such a hallmark in my life that I have fought abusive authority ever since.  That moment was the reason that decades later a respected colleague told me, "You've got brass balls, you know that?" 

Yes, I knew that.  Because I earned those brass balls on the football field at Marshall Junior High School as part of the Marshall Junior High School Band.  I earned them because my band director, Mr. Wilson, taught us that we had brass balls by expecting us to act like we did. He taught us courage.

So I thank you, Mr. Wilson, for what you did for all of us.

But I thank you especially for what you did for me.  You took me, an eighth grader who believed in justice, but who was too scared to do anything about it.  And you gave me brass balls that have lasted for the rest of my life. 

And for that, Sir, I am eternally grateful.





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On Hissy-Fitting and Lickety-Splitting

Great Big Baby Dog Woodrow, Old Lady Dog Callie, and I were lying on our bellies looking out my attic-bedroom window at 6:15 this morning.  Snuggling in bed with your dogs looking out the window together in the early morning is one of the great pleasures of life.  I commend it to you.

While we were gazing at the ice-covered woods, the dogs began throwing a hissy-fit.  If you are not from the American south, you may not know that a hissy-fit is a tantrum.

The Cambridge Dictionary defines hissy-fit as a sudden period of uncontrolled and silly anger like a child’s.  I do not think people from Cambridge throw hissy-fits. 

In addition, one does not HAVE a hissy-fit.  One THROWS a hissy-fit.  I do not know why.  

Perhaps it’s because throw is a strong verb.  A good hissy-fit is always thrown.  Most recently I threw a hissy-fit when I dropped my phone in the bath.

But back to the dogs’ hissy-fit.  They threw it because Young Red Fox was lickety-splitting down the cart path. 

The Oxford Dictionary defines lickety-split thus: as quickly as possible.  OD says lickety-split is an adverb, but I prefer it as a verb.  I know the word more intimately than the writers of OD do because I’ve been lickety-splitting all my life, and I doubt that anyone who ever worked on the Oxford Dictionary has ever lickety-splitted.  I can’t imagine a wizened don sitting in a dusty library telling another wizened don, “I need a definition of perspicacious lickety-split.”

Please note that I like verbing nouns, adjectives, and adverbs.  Lickety-splitting is a more powerful verb than running lickety-split.

Lest you wonder whether verbing is a verb, it is.  Antimeria/anthimeria is the act of changing one part of speech into another, such as verbing.    If you change the word, it’s a derivation.  If you don’t change the word, it’s a conversion or a zero derivation.

Lest you think this essay is pointless, let me assure you that I have a point: life is too short to throw hissy-fits by annoyances lickety-splitting through our lives.  Like other people’s antimeria:  Yesterday I was lickety-splitting past another white-haired woman who was throwing a hissy-fit about her daughter-in-law’s use of the word cocooning, as in, “We’re staying home cocooning this weekend.” 

I wanted to say, “Lady, at our age, life is too short for throwing hissy-fits.

“Instead, we should each go home and snuggle on our beds with our dogs and gaze into the snow-filled woods.” 

Dogs who get hissyfied by foxes lickety-splitting by.

Hissyfied?  One of my favorite antimeria is making predicate adjectives by adding fied to almost any part of speech.  So I hope you have been smartified today because I taught you about antimeria/anthimeria. 

And I hope you stop lickety-splitting for the rest of the day, get unhissyfied, and go snuggle with your dogs on your bed and stare out the window together. And thus be blessifed.

 

 

 

Asperger's Syndrome and Personal Hygiene

Standing under the steaming shower yesterday, I thought about the years between my first brain tumor symptoms and its diagnosis: 1990-2004.  In those fourteen long years, I became irritable and tactile defensive.  Light touch hurt my skin.  I could tolerate deeper pressure, but light touch hurt.  I told my doctor, “The top sheet hurts my skin. So do my clothes, showering, and wind.”  He said I had fibromyalgia, and he put me on nortriptyline, an antidepressant.  He didn’t know I had a meningioma brain tumor, nor did he know that nortriptyline is the drug of choice for inoperable meningioma.  He heard horses; I had a zebra.  So he masked my symptoms while the tumor grew for fourteen years. 

Fortunately, my tumor was operable, and from the day I had it removed, I lost the tumor-induced aversion that I had developed to the sound of violins and to florescent light.  I became my usual imperturbable self.  And I lost my tactile defensiveness.

Then I thought about the college students with Asperger’s syndrome whom I have known.  For most of them, tactile defensiveness made personal hygiene an issue.  They hated showering, bathing, washing their hair, or brushing their teeth.  They wore the same clothes day after day.

At first, we tried hinting. “Susan, let’s put bathing twice a week on your schedule.”

“I don’t want to take a bath.”

“Okay… Then let’s put changing clothes daily and using deodorant on your schedule.”

“I don’t want to.”

Finally, we found a student who interpreted for us.  She said, “Water hurts our skin.  The shower is like little sharp needles hitting us.  The bathwater feels bad in a different way.  And when I get out of the water, the air on my wet skin hurts.”

Wow.  We had no idea.

Some students would get into the water but refuse to use soap or shampoo, and we asked her about that.   She said, “Soap and shampoo feel slimy on our skin, like rubbing the slime in a stagnant pond on your body.  Using a washcloth is like rubbing your skin with sandpaper.  And the smell of shampoo and soap makes us sick.  You have no idea how awful toothpaste feels in our mouth, or how much a toothbrush hurts us.”

We learned that the acoustics of the shower make sounds hurt, that deodorant feels gross and smells worse, and what the clothing industry has come to appreciate: that tags in clothes irritate the skin.  We learned that some clothes feel better than others, and when you are dealing with the stress of college life, you need to wear your most comfortable sweatshirt and jeans every day.  I get that.  Nothing feels as good to me as my old pjs.

We argued, “We’re so sorry!  But when you smell bad or look dirty, other people have to smell you and look at you, and they won’t want to be around you.”  That argument didn’t work because, by and large, our students weren’t interested in what other people felt or thought.  “If people don’t like the way I look, they don’t have to look at me.  If they don’t like the way I smell, they don’t have to sit by me.  Their problem, not mine.”

A more helpful argument involved discussing the overgrowth of bad bacteria colonies on unwashed skin, hair, teeth, and clothes.  We explained that soap broke the surface tension of water so bacteria could then be dislodged by friction, and that using water without soap merely resulted in wet redistributed bacteria.  We explained that water could then rinse the bacteria off the body, hair, teeth and clothes, and then down the drain.

The argument was useful, but the aversion to hygiene regimens prevailed.

So I offer some outside-the-box solutions to consider.

First, unless they are working up a sweat, people don’t need daily baths.  As long as hands, underarms, the area between the legs, and the bottoms of the feet are cleaned daily, much bacterial growth can be controlled. 

Single-use pre-moistened cleansing cloths can serve as a bathing alternative.  My ancient auntie used these daily for years and bathed only every couple of weeks.

Unscented shampoos and soaps may help. 

Bar soap may be preferable to shower gel. 

“No poo” advocates have recipes online for alternatives to shampooing.  (Honestly, it’s the “no poo” movement. Make of that what you will.) 

Chewing on and brushing with miswak sticks may be easier for people with oral sensory issues than is toothbrushing.  Miswak sticks are pieces of the Salvadora Persica (Toothbrush Tree). The chemical properties of the miswak decrease gingivitis, and at least one clinical study found miswakking more effective than toothbrushing.  You can buy miswak sticks from Amazon.  I ordered some this morning so I can tell people that I’ve been miswakking.

What works for one person with ASD may not work with another.  Ergo, ask the person who resists a typical hygiene routine what is uncomfortable about it for him.  Then look for ways to minimize or eliminate that factor.  Change one thing at a time and see what works.  Try to have the solutions in place before your child leaves for college when his world will become even more stressful.

If water hurt your body, soap and shampoo felt like slime, brushing your teeth was torture, and most clothes irritated you, wouldn’t you resist subjecting yourself to them?  I would.  So think out of the box and work with your loved one who has ASD to figure out person-centered solutions to make life better for everyone.

My Mother's Damned Egg Slicer

My mother hoarded stuff.  Mother and Daddy’s house didn’t look like the houses on the TV show Hoarders.  It looked like a fancy antique store bulging with exotic artifacts from Europe and Asia.  Except for the kitchen.  The kitchen looked like a stage set from the 1970’s: countertops and cabinets crammed with Veg-O-Matics, garlic peelers, avocado slicers, nut choppers, corn holders, pie birds, fondue forks, plastic butter tubs, tin pie-plates, and wax fruit.  I don’t think they even make wax fruit anymore.  If they do, they shouldn’t. 

Mother’s wax fruit was sticky with years of grime.  Several times over the years, I tried to get her to throw it out.  I’d say, “Mother, if you want a hanging basket of fruit in your kitchen, I’ll go to the store and buy fresh fruit.  Eat it and replace it.”

“Leave my wax fruit alone,” she’d say.  “If you don’t like it, don’t look at it.”

Each time I made the long trip home to see my parents, I tried to clean out one drawer or cabinet while they napped in the afternoon.  Once, my MIL had accompanied me on the 700-mile round-rip and was keeping me company when my mother caught me cleaning out the lowliest of her thirteen kitchen drawers.  The drawer was full of yellowed newspaper recipes from 1965, sandwich bags of bread-sack twist-ties, and orphaned plastic lids.  In the back, wrapped in decayed plastic wrap held together by a rotted rubber band, was an egg slicer.  I had tossed everything into a trash bag.

With few exceptions, I don’t own single-purpose kitchen items, yet I’m a competent cook.  I make mouth-watering chicken’n’dumplings, authentic Tex-Mex enchiladas, and savory finkadella, all without specialized kitchen utensils. 

Granted, I do own a knife sharpener, and it’s a single- purpose item.  Likewise my potato peeler (although I managed without one for years), and a toaster (ditto). 

I do not own a waffle iron, a Panini maker, or an apple corer.  I certainly don’t own an egg slicer.  I do own a vegetable knife, a butcher knife, and three handy-dandy paring knives that I use daily; an electric knife that I use weekly; and a serrated knife that I seldom use and have decided to get rid of.  Any of my knives can slice an egg.  I don’t need an egg slicer. 

But apparently my mother thought she did.

She grabbed the trash bag into which I had tossed the egg slicer and started digging through it.

“It’s all trash, Mother,” I said.  “Let it go.”

“No,” she said. “You are always throwing away my good things.” She glared at me.

She found the egg slicer in the trash bag and held it up triumphantly.  “There!” she cried.  “My egg slicer!  You were going to throw it away!”

She waved it around.  “I’ve been looking all over for it!”  She jabbed it toward my MIL.  “Look!” she cried, “She threw it away!”  My MIL covered her mouth to hide her laughter and shook.

I took a deep breath.  “Mother,” I said patiently, “This egg slicer has been in the back of this drawer for so many years that the plastic is yellow and the rubber band around it has rotted.  You don’t use it.”

“Well, I wanted to use it, but I couldn’t find it!”

“Mother, you have 35 knives.  Why do you need an egg slicer?”

“Because I might want to have a party, and I’d need it to slice the eggs on top of the potato salad!”  My MIL bit her lip while tears rolled down her cheeks.

“Mother, you are 85 years old, Daddy is 90 and has Alzheimer’s disease, and you haven’t thrown a party in twenty years.”

“Well, I just might, and if I do, I’ll need this egg slicer.”

So the egg slicer went back into the drawer, and there it sat until Mother died.

The day after the funeral, I called my MIL.  “Is there anything of Mother’s that you’d like to have as a memento of her?” I asked.

Yes, she said, there was.  And so I dug through the bottom drawer again, found the damned egg slicer, tucked it lovingly in my purse, and drove it 350 miles to its new home.

 

 

 

The Old Man in the Yellow Hat- Epilogue

The Old Man in the Yellow Hat was found dead in the hours after I wrote about him.

Rest in Peace, Old Man in the Yellow Hat.

A Tribute to Two Musicians

Many years ago, my friend, Harvey McIntyre, wrote:

Some thirty years ago as a high school student, I had worked my way up to first chair clarinet in the band, and as such, I had been asked to perform at some civic function in Big Timber (MT).  My accompanist for that performance was Elnor Overland, a man who’d worked his way through college playing piano in a movie theater during the era of silent movies; he’d later worked his way through Law School giving organ recitals with the world-famous Eddie Dunstetter.  In the jargon of the day, he could make that organ stand up and talk.

About two-thirds of the way through the Clarinet Polka, the easiest piece I played all night, my mind went completely blank.  In stark terror, I looked at Mr. Overland, and he just winked at me.  He then launched into an improvisation of my part until I’d regained my thoughts and composure and could play that wooden licorice stick again.  No one in the audience probably realized that a true professional had rescued a rank amateur that evening.  To this day, I am indebted to Mr. Elnor O. Overland, Attorney-at-Law, composer, organist, and friend for what he later told me that evening: “Anyone can make good under the best conditions; professionals do it under any condition.”

When I read Harvey’s story, I nodded my head in recognition.  That week, virtuoso flutist Dr. Jackie Flowers had agreed to play with me, an amateur clarinet player, at a cocktail-party fund raiser. We had selected several Bach and Mozart duets.  The guests were gabbing, and clinking, and yumming, and making all the noises that people make at cocktail parties.  I wasn’t expecting that.  I don’t know why I wasn’t.  I know people make a lot of noise at cocktail parties.  But I still wasn’t expecting it, so I started out a bubble off plumb. 

When we got ready to play, I sat down to Dr. Flowers’s left, which meant that the sound of her flute was projected away from me.  But I didn’t think about that.  Until we began playing.  Immediately I realized that I couldn’t hear Dr. Flowers’s flute.  Heck, I couldn’t hear my own clarinet over the party-goers’ noise.  On our third number, a particularly complex invention, I lost my place in the music.  I looked at Dr. Flowers in a panic.  She nodded and continued playing while I figured out where we were and joined her again.  Before the next number, she suggested we exchange places so I could hear her flute.  We did.

Afterward, I told her how embarrassed I was.  The consummate professional, she laughed and reassured me, saying, “No problem.  No one else even knew it happened.”  

That night, Dr. Flowers rescued me just like Mr. Overland had rescued Harvey many years before.

So Dr. Jackie Flowers, Connsumate Professional, accept my profound thanks and admiration.

And Mr. Elnor Overland, rest in peace.  You may be gone, but you are not forgotten.

 

 

The Old Man in the Yellow Hat

At this moment, 8:10 at night, 25 degrees outside, an old man in a yellow hat is lost near my house.  I fear he will die.

I came upstairs to my bedroom at 6:00 tonight to read.  When I returned downstairs at 8:00, I saw the headlights of a vehicle drive up the golf cart path beside my house and turn down the path on the fifth green.  First I thought, “Kids!”  Then I thought, “Oooh.  Old people having a secret assignation!” 

Then the vehicle started shining a spotlight around in the trees.  Surely no one would be poaching in the middle of the village, I thought.  Then, Maybe it’s the police. Maybe someone has seen a peeping tom. When I was tiny, we had a peeping tom in our neighborhood.  My mom said a group of our neighborhood men “ran him out of town on a rail.” 

I imagined my dad and a dozen other men running east down Gidding Street all the way across town, and then north up First, and then east again on Prince Street out into the country with torches.  Some of them were carrying a railroad rail, and the peeping tom was riding it like a horse in the moonlight.  I imagined the neighborhood men shouting, “Get out and stay out!” 

I had heard of tarring and feathering, and I imagined some of the men running with buckets of black tar and carrying white geese under their arms.  These they would pluck after they had thrown the tar on the man on the rail.  (I had no idea that the tar would be hot and burn.  It would have just been like my Elmer’s School Glue.) Then they would throw goose feathers at the man, and some of them would stick to the tar.  I thought this would be a helluva strange thing to do.  But I thought that grown-ups were strange, so there was no telling what they might do. 

But back to tonight…

“Don,” I said, “A vehicle is driving down the golf path shining a searchlight!”

“Well,” he said, “While you were upstairs, three men came to the front door and asked if I had seen a man wearing a yellow hat.”

“Had you?”

“No.”

“Oh, my,” I said.  “Someone who has dementia is lost.  His people are looking for him.  If they don’t find him tonight, he’ll die of exposure.”

“Probably.”

Now it’s 8:50.  The vehicle has not returned.

I wonder if the men found The Old Man in the Yellow Hat.  I wonder if he was already dead from exposure when they came to our house.  If he is still alive, I wonder if he’s frightened.  I know he is cold.  I wonder if he was a war veteran and thinks he is a young soldier in enemy territory, if he’s seen the searchlight, but he’s hiding from it.

I wonder if he’s dying as I write this. 

God, have mercy.