Cathy A. E. Bell

Personal Essays and Poems by Cathy A. E. Bell

Category: Health

In Honor of Migraine Awareness Month, a poem.

Taken with Vignette for Android

When Light Pierces Through My Eyes Like Angry Tendrils

I am a vampire hiding
Hiding from sunlight,
Florescent light, light
Reflected on shiny things.
Even the little blue numbers
On the cable box display
Far across the room,
These are the things that hurt,
Seeking parts of my brain
I’d otherwise not know.

Scents coming through the air
Assault my brain like poison.
We afflicted cry out when
tiny molecules enter the nose:
Pumping gasoline
A woman who wears too much perfume
Car exhaust as the traffic light changes
(Please hurry)
Beautiful, beautiful lilies
Yeast in baking bread
And especially burning popcorn
Scorching in the microwave at work.
Ding.
These are the things that hurt.

Sirens screeching
Hail hitting the roof
Clank of a dish set in the metal
Kitchen sink, dryer buzzer buzzing
Children laughing, crying, singing
Sharp, biting barks (I love my dog, I do.)
Always the ticking clock
hanging on the bedroom wall.
Another tick. Another tock.
These are things that hurt.
These are the things that hurt me.

Charades

An incredible, short piece about Chronic Headaches from my good friend Lynn K. Hall.  This is one of the reasons we bond.  Charades.

Wash Me Clean

An essay about caring for my grandmother during her Alzheimer’s illness. It’s about the way we forget who our loved ones were before they got sick. Please go to Hippocampus Magazine to read it! Thank you!

Gram and Me

http://www.hippocampusmagazine.com/2013/10/wash-me-clean-by-cathy-a-ebell/

Life in a Scrapbook (Originally Published in Colorado Central Magazine–January 2013)

Cotton Proe as a teenager

Cotton Proe as a teenager

Anyone who ever met Charles “Cotton” Proe quickly forgot about the iron split-hook peeking out from his buttoned cuff where his left hand should have been. Instead they would be whirled up into Cotton’s friendly ambiance: his smile, firm handshake, and a gentle shine in his eyes. All who knew him called him “Cotton,” a nickname bestowed in early childhood for his nearly white head of hair. Although his shock of white became more blonde the older he got, the name stuck, becoming a small part of what made him such a unique man to those who knew him.

The essence of a man’s life may be difficult to capture, especially in a scrapbook. But, for Cotton, his scrapbook sums up his character and fortitude well. Many of his triumphs, illustrating his ability to overcome his limitations, appear in newspaper clippings; those that weren’t written about might be captured in a photo or a story told by his only living daughter, Bobbie, sitting around the kitchen table drinking coffee, looking through his scrapbook. And with Cotton Proe, there’s never been a shortage of stories.

One black-and-white photo in his scrapbook, circa 1909, shows Cotton as a young boy in Nebraska wearing his newsboy cap, kneeling within a row of other young boys all holding up dead coyotes. Cotton is holding one canine’s head while another boy holds the limp but beautiful body. The animal looks like he’s sleeping. Behind them are nearly 50 adults, family, and neighbors, the women in bonnets and dark coats, the men blurry in the background, most with barely detectable smiles or none at all. But Cotton, he looked like a boy who had just lost his best friend, with his full lips in a pout. Some looking at the photo might think it’s just country ranchers showing off their kill, but for Cotton’s middle daughter, Bobbie, that photo tells a much sadder story. “Daddy begged them not to kill this one coyote. He loved that coyote—he was like a pet to him. But, they went ahead and killed him anyway and Daddy was crying for his friend in that photo.”

Cotton with his family and neighbors iin Nebraska.  Cotton is first row, third from the left.

Cotton with his family and neighbors in Nebraska. Cotton is first row, third from the left.

Later years, in high school, a sepia-toned photo shows a basketball team, Cotton standing the tallest, arms crossed like his teammates, long nose, dimpled square chin, blonde hair short on the sides and longer on top, brushed straight back, resembling hair styles of the present day, his head tilted slightly, looking a bit cocky and certainly sure of himself. After high school, an article titled “Creamery Five Cinches Title in City Loop” describes a winning game for the semi-pro Norfolk Creamery team. Cotton scored well above his other team mates (and his competition), earning 12 points out of the 22 points that won the game. One can imagine his large, strong hands grasping the basketball and shooting the winning hoop. “It was the basket flipping of Proe, Creamery center, that cinched the game for his mates.”

Cotton with his basketball teammates. He's back row, center.

Cotton with his basketball teammates. He’s back row, center.

When Cotton was about twenty-two, Colorado came calling and he made the move to Alamosa, where one of his first jobs was hauling bricks to the construction site of the Alamosa State Normal School. Years later, when his oldest great-granddaughter told him she was accepted to Adams State College he said, “Well, I’ll be darned, Lil’ Red. I hauled the first load of bricks used to build Adams State back in the early 1920s when it was just a patch of grass. Isn’t that somethin’?” Whether her great-granddad was more proud of her or his part in the history of Adams State, she wasn’t sure; but his enthusiasm was evident either way.

One day, Cotton was driving to South Fork for a date when he spotted a beautiful woman standing on a bridge looking out over the Rio Grande River. Dorothy was helping a friend serve food to the Denver and Rio Grande Railroad crew at Masonic Park and was taking a break. Self-assured as always, Cotton pulled his Model T off to the side of the road and began to chat Dorothy up. Cotton quickly changed course and took Dorothy on a date that night instead. They married in 1925.

Cotton and his wife Dorothy on the Alamosa bridge

Cotton and his wife Dorothy on the Alamosa bridge

Other photos of the early 20s show Cotton, tall, lean, and dusty, in his life as a farm-hand, with bib overalls rolled at the cuffs, holding the reins of a horse. Lending more detail of Cotton’s life at that time is a photo-copy of an article about Jack Dempsey, the championship boxer. Jack was visiting his family’s farm in his home town of Manassa, just outside Alamosa. The photo shows a row of people standing in front of a Model T. In the middle stands a man in suspenders with a wide-brimmed black hat, hands in pockets—the only one with a slight smile in the photo. The caption reads: “Dempsey held a deep affection for this family and kept in constant touch with them. Here he and Kearns [his manager] are seen visiting Dempsey’s brother. Unidentified man in center was hired farm hand.”

Cotton working as a ranch hand in Colorado

Cotton working as a ranch hand in Colorado

After Cotton’s life as a farm hand, the photos of his life fade out for a bit, but the stories don’t. There’s no newspaper article telling of the Denver and Rio Grande railroad train he saved from derailing as a young brakeman working his normal route from Alamosa to Chama, New Mexico. But his daughter Bobbie will tell of the night in a dark canyon when Cotton was alerted that something was wrong while working in the second engine car. He swung out of his car, hurrying across the side until he reached the locomotive engine in the front. Finding the engineer asleep, Cotton grabbed the brake, grinding the train to a halt before it hit a large boulder on the tracks. Those that know Cotton will say he recounted all of his stories with humility and humor and, although he was a hero in this story, he probably didn’t feel like one.

In the early 1930s, a couple of years after leaving Alamosa (after quick stint as a Hoover vacuum salesman in Wyoming and Limon, Colorado), Cotton moved his wife and young daughter, Elaine, to Cañon City. A few years later he found one of his callings as a prison guard at “Old Max,” Colorado Territory’s first prison, built in 1871. Cotton’s relationship with the inmates wasn’t typical, but nothing much about Cotton’s life was. He put together a baseball team of trusties and took them to play ball with other town teams at the baseball field. He’d cart along his daughters and afterwards he’d treat them all to a burger at Murphy’s Drive Inn. Bobbie still looks back on those days with a giggle and watering mouth—it was the one time she was allowed to drink soda: an icy-cold bottle of Orange Crush. For Cotton and his girls, the cons were extended family, even the murderers. One convict even made Cotton’s eldest daughter a beautiful wooden chest, which remained one of Elaine’s most precious possessions.

Between baseball seasons with the inmates, Cotton’s youngest daughter, Peggy, was born premature. (Peggy would put together the scrapbook for her father decades later.) She was so tiny Cotton could slide his Masonic ring over her hand all the way up to her shoulder. Fearing she’d be dropped by a nun at the hospital, he built an incubator for her at home that used a light bulb for warmth. That story never made the paper either, but it survives in family lore.

Cotton with his German Shepard

Cotton with his German Shepard

But amidst the newspaper articles of Cotton’s life, among his obituary and short articles telling of his volunteer work and civil duties, is the one that explains best how a man lost his large, strong hand: the one that built the incubator, stopped the train, and threw the winning basket, and overcame his disability to keep playing his beloved game of golf.

“Up to 1943, I had a four handicap [in golf],” Cotton told reporter Bob Wood in an article published in 1973 and again in 1987. “In 1944,” he continued, “May 18th at 8 o’ clock in the morning, I cut my arm off in a sausage grinder.” Cotton was working in a grocery store, grinding meat, and when he pushed his hand in too far, the blades grabbed it. Cotton was rushed to a hospital in Colorado Springs where doctors managed only to re-connect his thumb to part of his forearm. Waking up from surgery, Cotton’s realization of his changed life must have been crushing.

“Lying in bed there, when the doctor came in I said, ‘Hey Doc, can I play golf anymore?’ He wouldn’t answer me.” After Cotton’s surgery, he asked for the thumb to be removed as well. He had befriended a young girl in the hospital with a prosthetic leg and seeing that her leg didn’t slow her down at all, he decided he wanted to be fitted for a prosthetic arm and couldn’t have one with his thumb attached. Cotton endured more surgeries. He confided years later to his son-in-law that the subsequent surgeries were harder than the initial one because they had to amputate even more of the arm to accommodate the prosthesis. He was often “cranky,” Bobbie remembers, primarily because the shoulder strap that controlled his hook’s opening and closing would rub his skin raw. It took many drives to Denver before the substitute arm and hand fit well.

Once Cotton’s pain was under control, his feisty spirit returned and it wasn’t long before he was on a mission to find a way to play golf. His goal: to build a prosthesis that would allow him to hold and swing his golf club again.

“I had the cons at the penitentiary help me at first because I was an ex-guard and I built eight of them before I finally perfected one.” Cotton designed his “hand” out of a piece of hose from a tractor for flexibility, a locking pair of pliers, and a rounded clamp welded the to the tip of the pliers. “I went out to the course and I hit a ball about 200 yards down the middle and I said, ‘Boy, I’ve got ‘er.’”

Life went on for Cotton. He bought and remodeled an old theater on Main Street, turning it into a bowling alley. An old black-and-white photo shows a piece of Main Street with a large white bowling pin sign attached high on the brick near the apartment windows above the store-fronts. Nestled between two signs, “Liquors” and the “E-A-T-S; Ellie’s Diner,” is an arrow pointing to the door of the bowling alley that says “Popcorn,” perhaps left over from the theatre days. He set up bowling teams for the kids in town and Bobbie would do her homework there after school so she could bowl afterwards. He ran the place for years, hiring a couple of club-footed siblings to be pin setters. He’d buy the kids shoes and other items their family couldn’t afford, save their money for them until they had something they wanted to spend it on, and drive them home “way out to the boondocks” when the bowling alley closed at night.

Main Street, Canon City, Colorado in the 1940s or 1950s

Main Street, Canon City, Colorado in the 1940s or 1950s

After Cotton left the bowling alley business, he began a twenty-year career as the superintendent of the “finest humane shelter in the United States,” according to a Daily Record article in January, 1969. Multi-page articles fill the scrapbook touting the new animal shelter (better known as the Humane Society of Fremont County now) with photos: the shelter with the caretaker apartment on top; brand new dog kennels and runs; Cotton preparing dog food for the nightly feeding; and his wife, Dorothy, bathing a stray dog. As well as taking care of homeless dogs and cats, Cotton and Dorothy often took in whatever family members needed taking in—somehow managing to fit everyone into the small five-room apartment above the shelter.

One perk of being the superintendent of the shelter was that Cotton oversaw all filming of movies, like The White Buffalo starring Charles Bronson, near the Cañon City area if horses or other animals were involved, ensuring the animals were treated well. He quickly became a favorite of cast and crew on many films. “The actors loved Daddy and looked after him,” Bobbie remembers. In one film, an actor tried dismounting a horse when his foot became caught, dragging him behind the running horse. Cotton quickly grabbed another horse and stood in the path of the runaway horse to stop him. He did stop the horse but was knocked around a bit and broke some ribs in the process. But, Cotton did what he always did: saved the day in his humble sort of manner.

Charles "Cotton" Proe

Charles “Cotton” Proe

A few pages over, a clipping shows Cotton accepting an award from the Elks (even though he wasn’t a member himself) for “Citizen of the Year.” They praised him for running the Fremont County Humane Society for two decades and for his care and love for animals. After a speech by an Elk member proclaiming Cotton’s “brotherly love” because he saved thousands of animal lives, he received a standing ovation from over 150 people. Cotton’s smile is humble yet proud.
After Cotton’s loss of his forearm and hand, he went on to become a legend in small-town Cañon City. He encouraged wounded World War II soldiers who’d lost a limb not to give up and showed the vets, by example, life could continue with some hope and determination. He won trophies for his excellent golf game (and bowling) and folks hailed him when he still continued winning trophies at tournaments into his 80s. And although he’s the only one in the golf and bowling photos wearing long sleeves (a far cry from the sleeveless shirts showing off his muscled arms of his basketball days), he seems a happy man, someone who did his best to make the town he loved a little better than he found it.

One writer, his name not visible from the photocopy of the article, after watching the Senior Beacon Open golf tournament and telling Cotton’s story, summed up his quintessence well, saying, “Now that’s what I call the determination of the human spirit; to carry on no matter what the odds.”
Those who knew Cotton were left with an impression of him as distinctive as his name. It was only fitting that the older Cotton grew, the more his hair color resembled the color it was as a child.

Cotton told folks, “The hardest thing about gettin’ old is watching your friends die,” and because he died at 93, he outlived most of them. But his family keeps the stories and images of him alive—even if his friends can’t—picturing him on the golf course, holding the 9 iron firmly with both of his hands, his tuft of white hair glinting in the sun.

My Nemesis

A postcard from the Body World Exhibit.

A postcard from the Body World Exhibit.

I estimate that at least eight years of my life have been stolen by wicked, sneaky migraines (if you add up all the minutes, hours, and days).  The poisoned feeling along with a pounding head first made its debilitating debut into my life in the fifth grade.  I was carted off to an eye exam because my teachers thought eye strain might be the cause.  It wasn’t.

I won Student of Month that year and was interviewed by my motherly teacher for the write-up and photo that hung in the hallway of the school. During the interview, Mrs. Lowe asked, “What is your biggest pet peeve?” I told her it was the headaches.  Always the headaches.

Later that year, our fifth grade class took a trip to Denver to visit museums, the Mint, and the magical Casa Bonita.  Since we came from a small, southeastern Colorado town, we stayed overnight at a school: girls slept in the library, boys in the gym.  While all the other girls were playing and having fun, I buried myself deep in my sleeping bag to keep out the light and noise. My savior, Mr. Nichols, our school principal, noticed I was sick and gently coaxed me out of my bag and took me by the hand to the cafeteria to get me a carton of milk.  In the dark and quiet of the cafeteria I felt better.

Migraines are my nemesis, my angst, forcing me against the grain of who I am.  I use up all fifteen sick days a year at work, plus some vacation, too.  What should be relaxing vacation time is spent, instead, lying in the dark with an ice-pack on my head chanting “Please go away.”   I feel embarrassed when I have to send the email to my boss and department saying I have to go home, again.  Often times, if I’m busy with important tasks, I’ll work through the migraine until I have things under control, and then I go home.  I’m lucky to have a compassionate supervisor and department head, who graciously accept this disabling disease of mine.  Many people who suffer with migraines aren’t so fortunate and suffer job loss.  Studies estimate the economic impact of migraine headache to be in the billions of dollars. I count my blessings.

The disease invades many systems in my body: nervous, circulatory, endocrine, muscular, and digestive. I’m not sure the medical community realizes it’s a systemic devil, but I know.  It took me 30 years to figure out that dysfunctional digestion is a huge factor in setting off a migraine.  Some theorize the body becomes toxic when foods aren’t properly digested or eliminated and that a full colon can cause pressure on the sympathetic nerve centers and on the cerebrospinal system. I don’t know for sure, but I do know my digestion problems are connected—and so are my hormones, blood-sugar, sleep patterns, the weather, and countless other things.  Like I said: It’s sneaky.

Those who have never had a migraine can’t imagine what they’re like. I understand. It’s impossible to know the bastard unless he’s ingested part of your life and invaded your body.  Anyone that’s ever had a migraine, though, even just once in childhood, understands. You don’t forget the misery, hopelessness, need for darkness and quiet, and time ticking past at a deathly slow rate while you beg for the symptoms to lessen–just a little.

I understand now that depression and chronic pain are very intertwined.  When I feel well, I love my life.  I can’t wait to read my latest book, talk to friends, work in the yard, clean up the house, and write.  But when I’m sick, and the for the day after–there’s always a migraine hang-over–the house remains messy, the dog un-walked, the books unread.  Daily chores are beyond my ability and interactions with people seem muted and cloudy. Food doesn’t sound good, either. Life just has a dull pallor to it.  All the little pleasures normally enjoyed are hidden away, out of reach.

But then, after the migraine leaves and the hang-over subsides, life is grand again.  I’ve learned to do everything I can when I feel well, so I won’t be stressed out when I’m sick. As much as I like to get things done, everything is put on hold when the migraine hits and that’s okay.  I’ve learned to take all the pressure off of myself when my head is pounding, and relax.

Once every couple of years or so, I’m desperate enough to seek medical help. Sadly, Migraineurs are sometimes perceived as drug-seekers.  I’m relieved Kaiser doesn’t treat me that way.  The nurses and doctors get me in quickly, turn down the lights, and give me an ice-pack without me saying a word.  Then they ask me what my usual cocktail is for relief. I say, “Demerol and Phenergan.” Soon I feel some relief from the intense pain and nausea, finally able to sleep when I get home.

Thankfully, the triptan drugs like Imitrex, give me reprieve much of the time. I’m not sure how I survived migraines before their invention.  Rarely do I use narcotics.  They make me sick (and exacerbate the digestive elimination problem).  That said: There is a time and place for the pain-killers—day nine of a migraine is one of those times.

Once, over a decade ago, I was denied pain-killers at an urgent care facility.  The nurse said, “Studies show that an I.V. with fluids and anti-nausea drugs are shown to be just as effective as narcotics.”  If I had been in a normal state of mind (another symptom of migraine is not being able to think or speak very well), I might have replied to the nurse, “That may be true when you first get a migraine, but when you’re on day nine of that migraine, you’re lucky if narcotics will even help.”  The whole scene created just one more layer of blame, guilt, and shame that forms tightly around the unbearable pain and sickness.  In my disbelief and feelings of helplessness, all I could do was cry and tell her to call my dad in from the waiting room.

Even at thirty years-old, I needed my dad to fight on my behalf that day. And he did.  He demanded to see the doctor. When the doctor denied me narcotics again, stating they didn’t even carry them in urgent care, my dad stood up and yelled, “Well, can you tell me what to do to help my daughter then?  If you people can’t help her with this pain, then tell me where to go or what to do!”  I hated witnessing his rage, but I needed him to funnel the anger I could never muster up for myself.  Even though I hadn’t told him I was suicidal, I think he knew.  His desperation and fear mirrored mine.

When someone is sick enough to go to the doctor over a migraine, every single blood-pounding moment is too much to bear.  The two hours I sat in the waiting room, hoping for relief, was seven thousand, two hundred blood-pounding seconds too long.  But I was willing to go through it all as long as I knew relief was coming; to be told relief wasn’t coming was heart-wrenching.

Finally, the doctor agreed to get morphine from the emergency room next door.  In the end, I felt a tiny bit better, and that was good enough. Mostly I felt defeated and just wanted to go to bed. Thankfully, that experience was rare and not the norm.  I learned after that to manage my pain better, curbing it any way I could before it got that severe.

I’ve certainly learned a few other things about migraines, too—things that make me feel better. One: I can’t cure myself. I do, however, look forward to menopause when many women report migraines subside greatly.  Two: It’s not my fault I have migraines.  Genetics can take some of the blame. Six genes have now been shown to contribute to the disease.  Three: A trigger is only a trigger sometimes, but if you pile on several triggers, you’re in trouble.  So, skipping a meal, not getting enough sleep, being premenstrual, and then trying to have a drink? Not a good idea.

In my quest for healing, I’ve tried 2 drugs from every classification of preventive medication.  Massage, chiropractor, Botox, colonics, thousands of acupuncture needles, changing my life habits…  And when those didn’t cure me, I tried the more spiritual side of things like praying to saints (begging might be more accurate), talking to psychics for any clues on how to manage them, and energy work.  Maybe one day I’ll even get some of the healing dirt from Chimayo, New Mexico.  Well, it can’t hurt, especially compared to the six inch acupuncture needles I’ve had in my head. And if all else fails, my plan is just to patiently wait for menopause. Growing older never sounded so good.

Also published at migraine.com

Broken-Down Body, Beautiful Soul (A Story About a Man with Multiple Sclerosis Who Changed My Life)

I was 20 years old, a full-time college student, and minutes away from meeting Terry, one of the greatest friends I would ever have.  I pulled up to his upper middle-class suburban neighborhood nestled against the foothills on the West side of Denver and was thinking how much I needed this job—the pay was double my part-time hourly rate at the convenience store and this job sounded much more fulfilling than mopping floors, working a cash register and working for ol’ lady Myrna who was late to relieve me every night at 11 PM when my shift was over. 

I was nervous about interviewing for a job so unlike any job I’d applied for before.  All I knew from my best friend, who worked with Terry’s wife, was that he was in a wheelchair and they desperately needed help.  Terry and Penny were hiring someone who would clean, cook, take care of the yard, and do physical therapy exercises with Terry.  What did they expect from me? What was it like to work with a disabled person? I was getting my degree in Psychology and wanted to work in a helping profession someday anyway and this was a perfect chance to help someone who needed me.

As I walked to the front door, I thought about the phone conversation I had with Terry the night before; he was kind, intelligent and easy to talk to.  When I rang his doorbell, Terry came to the door riding his scooter and welcomed me in.  We sized each other up pretty quickly and knew instinctively the situation was going to work out well. 

Terry was in his early forties, balding, with a full beard and mustache sporting a bit of gray.  His voice was soft, but deep and his whole face was smiling—eyes twinkling.  Sometimes he’d laugh so softly, you’d have to listen very carefully and look in his eyes to tell if he was really laughing.  He was wearing sporty slacks and a golf shirt.  His scooter-like wheelchair had three wheels and was powered by a car-sized battery with a quiet whirr wherever he went.   On the handlebars of the scooter hung a basket with all his accessories—a portable phone, a folding multi-tool, and his wallet.  We began to get to know each other and joked around and after a half an hour, he hired me.  That day was a new beginning in my life—I spent the next 6 years by Terry’s side.

Terry was 28 years old when he was diagnosed with Multiple Sclerosis.  When Terry tried to re-enlist in the Air Force, he failed his physical.  They claimed he failed the hearing test—he knows now it was the “move your leg around in a circle” test that he really failed.  He said his leg was supposed to move smoothly, but the movement was staggered during the test.   Months later, he began falling for no reason.  Terry went to a doctor.  After many tests, they gave him the diagnosis.  Having MS meant never having full control over his body, watching his ability to walk fade away, and wondering some days whether he would have the physical strength to pull himself out of bed.  Terry lost his military career, lost his 1st marriage, and later,  his career in the auto industry, each loss a direct result of his illness—and all in the prime of his life. 

Terry had been in a wheelchair for about eight years when I met him.  I never sensed anger or bitterness about his loss of a healthy body—instead he possessed a joy for life that is rare in most people.  Part of that joy was having Penny in his life—his best friend and partner.  She really loved him and knew of his illness when she married him, but married him anyway.  They were a great team and working in this home day to day offered me a new and profound perspective on life.

Terry treated me more like a team-mate or family, and not so much like an employee.  Every day I’d get to work and say, “What are we doing today, Homey?” 

“Well, Bones,” he’d say while he pulled out his list, “Today we are going to the grocery store and then going to make Rice Krispy treats.  Tomorrow is laundry and mowing the lawn.”

One day when I asked what we were going to do.  He said, ”Going to look at a BMW I want to buy.”  So, off we’d go to buy a black M5.  He couldn’t drive, so when I’d drive it he’d say, “Step on it woman!  This car needs to be driven fast!” 

“Okay!” I’d yell over the wind blowing through the car, “But you are paying for my speeding ticket if I get one!”  I haven’t driven a fast beast of a car since, but when I drove for Terry it was to make him feel like he was driving himself.  He’d say, “Man, I miss the freedom of just getting in my car and going wherever I want. I miss driving in the New Mexico desert.”  I couldn’t give him the desert or his independence, but I gave him my youth and all the excitement and hope for the future that it brings.

Other days we spent our days working on the house, Fleetwood Mac’s Big Love pumping out Terry’s huge speakers and expensive stereo system, talking and learning about each other’s history and dreams, waiting for Penny to come home from work so that we could eat the dinner I had prepared with Terry’s guidance.  Terry was the mind and I was the body.  He verbally walked me through fixing the closet door, changing the oil in the snow blower, hooking up new stereo components, or repairing the sprinkler head in the lawn.  My favorite thing was working in the yard.  Terry would sip his iced tea on the porch and tap his foot to Robbie Robertson playing over the outside speakers while I pulled weeds or planted in the garden.     

When we weren’t working, we were philosophizing about life and love and death.  I was learning about Abraham Maslow and Peak Experiences in school and we’d talk about Maslow and Jung and any other theorists we found relevant to our emotional and spiritual growth. I read books aloud to him after doing physical therapy exercises, or we fell into a trance listening to a new CD we had discovered earlier that week—maybe Loreena McKennitt or The Blessing.  Terry introduced me, a culturally sheltered young woman, to many things in life I had never experienced.  Before Terry, the only Asian food I’d ever eaten was La Choy in a can.  He and Penny took me out for Vietnamese and I ate rice noodles and learned to love cilantro and lettuce with my egg rolls.  And he and Penny took me to my first performance, Phantom of the Opera, and later Miss Saigon.

Our Fridays were spent visiting art and nature museums, state parks, and quaint little shops looking for books, incense, or enlightenment of some sort.   We drove to Boulder and watched street performers on the Pearl Street Mall and ate cheese fondue at my favorite restaurant. Those were the happiest days in my life. Through this life I began to live in the present moment—the here and now.  I didn’t worry about school, or making ends meet—I only lived in the glorious moment of now—Terry did, too.

 Terry showed me the world—more importantly, he showed me myself.  He was the first person that ever demonstrated compassion and total acceptance of me on a daily basis.  He would tell me I was one of the most passionate people he’d ever met, that I was good-hearted, and when I felt bad about things, he’d look at me with love in his eyes and tell me he understood me and tell me I was a good person.  He had a way of pointing out the truth to me without making me feel defensive.  I became more self-aware.  He was a mirror, reflecting my true, wonderful self.  Soon, I began to see myself through Terry’s eyes and although I battled with a fragile self-esteem, each day I grew into a more loving, compassionate, aware, and self-assured person. Terry and I gave each other hope for the future and he gave me a love for life.  I had intended on helping him that day I walked up to his door.  Instead, he gave a much bigger gift to a young woman fighting so hard to figure out life—a love for the world and a love of myself.

Originally written in 1999 and years later published in The Human Touch Journal at University of Colorado Denver Anschutz Medical Campus

An Essay About My Grandmother and Her Alzheimer’s called “Number One”

My earliest memory of her—rocking me in her arms, singing You are My Sunshine, patting my butt to the rhythm of the rocking—her velvety hands, smelling of Avon hand cream, caressing me, patting me, loving me.  Later, whenever I visited her, I remember her always showering me with gifts: perfect outfits she spent hours sewing, little girl jewelry, modeling clay, personalized books with me as the leading character, and a doll that crawled.  My step-mother was fed up with how many dolls I received from her, but my grandmother bought them for me anyway.  She loved me.  I was the center of her universe.  As a child, a teen, and then a young adult, I knew—when I was in her presence—the world was just right and safe and good. 

I miss her.  I miss calling her when I have news. Sometimes I make up conversations in my mind.  “Hi, Gram. Guess what? Remember how much my eyes have been bothering me?  Well, I found out that I have severe dry eye.  All these years, I never knew that’s what it was.”  She’d say, “Oh, no. That’s just horrible. You poor thing.  I hope they can figure out what to do to help your eyes.”     

Or maybe I want to tell her about someone I’m dating.  But, I really don’t date anymore, so I guess that’s one conversation I don’t have to make up in my head.  Maybe I just want to cry to her and say, “Gram, the last 6 years have been so hard…I miss having you to lean on.  I miss you taking care of me and I’m tired of taking care of you. I love you, but the burden of your house and finances and the fights trying to get you in the shower and taking care of Grandpa and getting you on Medicaid and finding a nursing home—it’s just all too much. I’m tired and I just want you to hold me and tell me everything is going to be okay, like you used to.”

I guess, technically speaking, I could drive over to the nursing home she’s in now and have any one of these conversations with her—well, maybe not the one about taking care of her. She wouldn’t understand because she doesn’t know she’s sick. But certainly we could have a chat about the dry eyes.  She’d say exactly what I know she would. Yet, somehow it’s not the same because, one minute later, she won’t remember the conversation we just had. So, the comfort I used to get, and the best friend she used to be, are gone.  But, I still tell her things anyway. It makes her happy to hear about my life and it gives me a little glimmer of how things used to be. 

They call Alzheimer’s “The Long Good-Bye”.  It’s true.  You say good-bye a little at a time.  You miss your loved one and then feel guilty because he or she is sitting in front of you.  I’m lucky, though—my Gram still knows who I am. She still lights up when I walk into the room and brags about me to her family and friends.  She’s told me the story of the day I was born more times than my mother has. She always tells the tale with her arms cradled like she’s rocking me to sleep.  “You were born and I just felt like you were mine.  I knew you were mine.  God gave you to me and I had meaning in my life like I never had before. All the nuns in the hospital thought you were my baby.  You were my angel and you were all that I thought about. I hated to leave you with your parents. “

And who’s to blame her for not wanting to leave me with my parents?  When I was born, my mom had just turned 17; my father, 19.  They were kids who had no idea what to do with a baby.  It must have been hard for Gram to leave me, knowing my life was not going to be the calm, comfortable life she’d give me if she could.  She worried about me constantly.  My parents were dreadfully poor, so Gram would try to help as much as she could.  She bought fans because our trailer was too hot and bought me clothes, toys, and blankets.  She had a way of stepping in and filling in the gaps—not just when I was a child, but for most of my life.  She protected me.  She cherished me.  I constantly felt her love. 

Gram always tells me, “You are my number one!” and holds up her index finger to punctuate the point.   I’ve never felt more loved by anyone.  Luckily, that hasn’t changed since she got sick.  Thank goodness she’s still “there” enough to know she loves me.

 

Gram is happy now in the beautiful nursing home I chose for her.  She was depressed at first and cried every day.  She wanted to go home, even though she couldn’t always articulate that sentiment.  I felt horrible guilt when I wasn’t there with her every day.  But, now she has a friend, Charlotte, who wears funny hats and hobbles around using her walker.  Charlotte doesn’t talk much, but breaks out into song in response to anything you say to her.  If Gram says to me, “Cathy, your dog is so cute!”  Charlotte starts singing, “How much is that doggie in the window?”  Then Gram lights up and starts singing, too.  When they aren’t singing, they laugh at each other’s senseless jokes for hours.  They are so crazy about each other that they aren’t even allowed to sit together at meals because they never shut up long enough to eat. 

Sometimes I visit and we hang out in her room.  I lie down across the bed while she sits in her wheelchair and we fantasize about what trips we want to take—sometimes it’s to places she’s been or sometimes places she’ll never see, like Hawaii or Europe. Instead of letting her feel sad and trapped because she can’t just hop in her car and drive, I initiate imaginary trips.  We ate lunch on the sidewalk of a French cafe, chatting and people-watching.  We drove the English countryside, looking at the rolling hills and farmers with their sheep.  We traveled across Colorado and New Mexico in a fast car—she’s driving of course, with her foot to the floor. 

Sadly, though, some days when I go visit her, she’s so enamored with Charlotte that she forgets my dog and I are even there.  Talking to me, she’ll turn her head to hear something Charlotte has said. The next thing I know, she’s rolling down the hall in her wheelchair, laughing and looking up at Charlotte as they head to Charlotte’s room to eat candy and tell their secrets to one another.  I try to tell myself that it’s wonderful she’s so happy now and that she no longer relies on me to make her happy all the time, but later I cry because it hurts to not be “number one” today.

Several months ago she told me that we were soul mates. “Yes,” I said, “I know,” with a nod and a smile.  I’m not sure how I know, but I know she and I are connected spiritually—always have been, always will be.  I know I’ll be as close to her in death as I have been in life.  I feel such a sweet comfort in that knowing.  

I don’t think I’ll have any regrets when she dies—no wishing I had done this or said that.  I’ve said everything I need to say.  I’ve loved as much as I can.  I’ve washed her hair in the sink like she used to wash mine as a child.  I’ve curled her hair hundreds of times, just the way she likes it, and told her how beautiful she is—as she did with me when I was a kid.  I’ve bathed her, cooked her favorite meals, and listened to her stories, much as she bathed me, baked my favorite cherry cheesecake, and listened to my stories about boys.  I just hope I’ve been able to return the favor and give her the sense that life is just right and safe and good.

Originally published at A Long Story Short and as “Missing Her” in The Human Touch Journal at University of Colorado Denver Anschutz Medical Campus

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