In spite of it all: Despite hardships, Everett woman endures

Published 4:51 pm Monday, November 16, 2009

No matter how bad things get, Crystal Jelvik finds the strength to move on with the business of living. Most days it’s with a smile. On this day, she is in pain and cannot hide it.

Long red fingernails peel away blankets.

A peach-fuzz head appears; a pair of green eyes, then a nose.

She steps slowly across the brown carpet, passing a vomit stain left from the worst of her chemo days.

Crystal, 45, stops at a dresser covered with trophies and a pair of scarlet-haired dolls.

Crystal can’t see the dolls, because, like theirs, her eyes aren’t real. They’re prosthetic. Crystal chose dolls with red hair because that’s what she looked like as a child, before blindness darkened her world.

One of the trophies is for completing vocational training at a school for the blind. The other is for being a phone counselor at a suicide-prevention hotline, where her voice comforted people desperate for someone to listen.

Her name is misspelled on that one.

She leaves the bedroom and walks down the stairs, holding the banister with her right hand. The paint on the wall is worn where she touches it to guide herself, sliding the knuckles of her left hand against the opposite wall.

She carries a small pharmacy in her large black purse.

Pills for depression and sleeping, to tame heartburn and regulate blood pressure. There are pills for hormone therapy and for when the pain gets too intense.

Each has its own place. The dosage instructions are hard to keep straight in the fog of chemo.

Fourteen stairs to the couch.

Framed photos of her son hang above the railing.

Crystal is nauseous. She needs to check her blood sugar.One spring night just before Easter, all those years ago, a shy girl with wavy red hair jolted awake, sick to her stomach and extremely thirsty.

No matter how much she drank, Crystal, then 10, couldn’t quench her thirst. And she couldn’t keep the water down. She threw up, then curled in the fetal position.

She was disoriented and started to hallucinate.

When her mother, Phyllis, returned from her job working nights at an egg farm, she took Crystal to the hospital in Everett.

Crystal lapsed into a coma. Her family feared for her. She was baptized in the hospital’s chapel.

The doctors finally pinpointed her illness: Type 1 diabetes.

She was sick because her body lost the ability to create insulin. She spent weeks in the hospital, where nurses taught her mother and grandmother how to give her insulin shots, check her blood sugar levels and manage her disease.

Her life changed.

At first, her mom gave her insulin shots. Before long, the little girl was injecting herself once a day.

She hid her diabetes from people. It made her feel like an outcast.

As a teen, she lived with her mom, stepfather and three sisters in a small house near the Boeing factory in south Everett. There were summer swims at Silver Lake, roller-skating and weekend matinees.

Crystal had a mother in common with her sisters, but each of the girls — Crystal, Cindy, Candi and Charlotte — had different biological fathers.

During Crystal’s freshman year at Mariner High School, she sought attention in a self-destructive way. She deliberately skipped insulin shots, making herself sick enough to be hospitalized.

During her sophomore year, she started cutting classes and smoking. Her grades slipped.

The following year, she dropped out, but completed her GED.

Crystal met a guy who already had a daughter. She moved into his cramped apartment on Casino Road. He didn’t always treat her well, but he did give her attention. Crystal soaked it up until the day he slammed her against a door.

With that, she moved back home.

It was October 1981 when Crystal’s mother was feeling sick and couldn’t eat.

The Everett Clinic doctors discovered that she was dying of stomach cancer.

They told Phyllis, 38, that she had six months to live.

Phyllis and her husband drove to a restaurant for a stiff drink with Crystal’s older sister Cindy Mullins, then 21, and her husband Mike. They came home to tell Crystal, then 18; Candi, 16; and Charlotte, 12.

A hospital bed was set up in the middle of the living room. A hospice nurse taught the family to handle Phyllis’ day-to-day care. Growing up with diabetes, Crystal had spent weeks in hospitals with her mother by her side.

Now, the roles were reversed.

Phyllis withered before everyone’s eyes. No longer did people mistake her for Crystal’s sister. She lost her long curly brown hair and covered her scalp in a soft turban.

While there were moments of unimaginable pain, she kept her humor throughout most of the ordeal.

“Never get too skinny,” she told Crystal, who sat at the bedside of her skeletal mom. “Because sitting down hurts your butt.”

When Phyllis was sleeping one day, Crystal leaned over to listen if her mother was still breathing.

“Not dead yet,” Phyllis shot back.

She was like that, frank and to the point, playful and quick-witted. In many ways, Crystal takes after her mother.

Phyllis died at home on Mother’s Day 1982. Months earlier, she had written a farewell letter to her girls.

She asked Cindy to keep the family together. She wanted Candi to smile and love everyone. She told Charlotte she could be anything she wanted.

Her parting advice to Crystal was to take care of her diabetes, to hold her head high and to have respect for herself.

It was advice Crystal would ignore.

Crystal drifted after her mother’s death. She left Everett for a Job Corps camp in Oregon and later moved to the Seattle area.

Along the way, she met Tami Nelson, who became one of her closest friends.

Crystal and Tami moved into a Renton apartment complex with a pool. Crystal worked at a hotel, Tami at a women’s health club. On their off time, they’d cruise in Tami’s souped-up Toyota Celica. They’d hang out at dance clubs and talk at a downtown Denny’s that served piping hot fries into the wee hours of the morning.

They stayed out too late and slept in too long.

They got booted from their apartment because they didn’t pay their bills. They moved to a place in Kirkland and then into a low-rent motel near the Space Needle.

Crystal met a young man from Seattle’s Central District.

By 1986, the year Crystal turned 22, she was pregnant with his son. The couple moved to Seattle’s Rainier Valley. Money was tight. Crystal was eating a lot of junk food and not managing her blood sugar.

Crystal was eight months pregnant when she passed out on a downtown Seattle sidewalk. Her blood sugar had plummeted. An emergency peanut butter-and-jelly sandwich was stashed in her purse, but she couldn’t get to it in time.

She was taken to a hospital and stayed there for the rest of her pregnancy.

On Sept. 8, she gave birth to a boy with big brown eyes. She was in love with her baby, delighted to be a mother.

The next day, she noticed black spots floating across her field of vision.

They were almost like flecks of dust on a camera lens, a spot here, a spot there. Soon, there were days when ordinary daylight was a glare that kept her indoors. Within a year, she only could see light and dark shapes.

The cause was diabetic retinopathy, a common complication of diabetes that causes changes in blood vessels of the retina. It is the leading cause of preventable blindness in the United States. Pregnancy and poorly regulated diabetes are among the risk factors for retinopathy.

Crystal eventually lost all vision, even light perception. Her body rejected her useless eyes, causing her extreme pain. One eye had to be removed and a cosmetic cap was placed over the other.

Her son’s father was gone by the boy’s first birthday.

Crystal was suddenly a single mom and newly blind.

Crystal learned how difficult everyday tasks are for those who cannot see. How do you tell the difference between a $1 bill and a $100 bill? Or match socks? Read mail? Shop for groceries?

When she went blind, Crystal found new direction.

First she went to the Seattle Insight Center, a live-in program designed to help the recently blinded learn life skills.

She lived in a dorm room there. Her older sister Cindy took care of her toddler.

Cindy and her husband would take Crystal home with them on weekends so that she could be close to her son.

Later, Crystal enrolled in community college.

Unknowingly, she hammered out her first paper, a three-page essay, on a typewriter with a dried-out ribbon. She turned in a blank paper.

That taught Crystal to ask others for help. There was no other way she would survive. Classmates took turns reading assigned books aloud and recording them. She got a service dog, a golden retriever named Manda.

While attending Everett Community College, Crystal volunteered for a suicide-prevention hotline. It didn’t matter that she couldn’t see.

“It helped me focus on helping others instead of dwelling on my own problems,” Crystal said.

At Crystal’s graduation ceremony from EvCC, she got a standing ovation as she walked across the stage with Manda. She never felt so supported in her life.

In 1996, she earned a bachelor’s degree in social work from Western Washington University through an extension program in Everett. She chose social work because she wanted to make a difference in people’s lives.

“I felt like it was my chance to give back to the community,” she explained. “I realized that I wasn’t going to be able to get a job just anywhere because of my blindness and I felt there were so many people who helped me along the way, I couldn’t let them down.”

And she wanted to prove that she could.

After college, she struggled to find a job. She ended up answering phones for an Everett eye doctor.

It wasn’t what she had hoped, but the income allowed her and her son to remain independent. She kept the job for eight years and saved enough money to buy a townhome in northeast Everett. But she wanted a job where she could do more for people.

A few years ago, Crystal left the eye doctor to become a social worker at the Salvation Army in Everett. She helped find housing for families who were homeless or on the brink.

She felt like she was making a difference.

She’ll never forget the woman in her 30s who had been moving from couch to couch with her teenage daughter.

The woman came to the Salvation Army without a job or a home, with the paralyzing fear that she had no hope for a better life. With Crystal’s help, the woman got cash for groceries, got into an apartment and started going to school.

“I could just see her blossoming, and it made me feel good that I was able to play a part in that,” Crystal said.

But Crystal’s blindness made it difficult for her to keep up with the paperwork her job required.

She was laid off from the Salvation Army in April 2008.

Two months later, a doctor performing a mammogram discovered the lump in her breast.

Crystal waited downstairs at home, the curtains drawn and the living room dark on a cold and damp October morning in 2008.

Her black cat, Jasper, moved between the curtain and the back of the couch. His bright yellow eyes focused on Crystal. He rubbed his face against her cheek before curling up on her lap.

An ashtray on a side table near her couch was filled with cigarette butts. Stale tobacco smoke lingered in the air.

The night before, Crystal took her mind off things for a while, laughing through the remake of “Get Smart” on television. By morning, she was withdrawn.

She lit another cigarette. Crystal was ashamed of her habit, but at the moment, quitting was too difficult. The doctors had found a tumor inside her left breast about the size of a grape. A biopsy confirmed it was cancerous.

Doctors removed her breast. She ached for a few weeks, but the pain was tolerable and quickly tapered off.

The chemo was another story.

She went in one day a week. Took a week off. And then went back. Crystal became so sick she needed to be hospitalized. A nurse posted a sign above Crystal’s hospital bed reading “Patient is Legally Blind.” Crystal asked if she could add the warning: “And She Bites.”

Bills piled up. She had no savings, and disability benefits from Social Security barely paid her mortgage and power bill. Her cell phone and credit cards were canceled.

Crystal remembered her mother’s struggle with cancer as she waited for her ride.

For six months, a driver took Crystal to Providence Regional Cancer Partnership’s new cancer center. She was treated on the chemotherapy floor, where floor-to-ceiling windows provide views of the Cascade Range, views that she could not see.

Two full hours passed before her chemotherapy treatment began.

Crystal was seated in a tan padded lounge chair in the corner of the room, next to an IV drip with chemo drugs.

On this visit, she could hear a few voices: Words and laughter jumped out from the wall of noise. A nurse brought Crystal a can of Diet Sprite with a straw.

“I’ve seen you before,” a nurse said, kneeling and gently touching Crystal’s arm.

“I haven’t seen you,” Crystal joked back.It would be so easy to stay in bed.

No job. Sick from chemo. Hiding under the covers from bill collectors.

Still, Crystal got up each morning, went through her routine and hoped for something more.

“I just believe that there’s something better; something good is going to happen to me one day,” Crystal said. “I just know it. I don’t know what it is but that’s what keeps me going on.

“Plus I’m nosy.”

Even during the worst days, Crystal found joy in the little things in life that most people overlook.

One day last November she went with her sister Cindy and niece to make the most of a $200 Wal-Mart gift card.

Crystal sat in a wheelchair shopping cart. As they weaved their way down the aisles, her sister and niece got things that Crystal needed. Wet cat food for Jasper. Diet soda, pizza rolls.

A little boy and girl squealed with delight as they circled Crystal’s stopped chair. Crystal smiled and turned her head this way and that, tracking their sounds.

“I love listening to children having fun.”

Even a trip to the Department of Licensing for an identification card held no dread for Crystal.

Sitting on a hard plastic chair in the sterile white room, waiting for her number to be called, Crystal smiled and joked about how she was getting a license to become a school bus driver.

That same attitude helped her when her hair came out in clumps, a side effect of chemotherapy. Crystal decided to shave it all off. She made it a party, inviting nieces and their kids over for pizza.

That night in January, the week before her 45th birthday, Crystal’s TV glowed with the light from cartoons. She clutched a blue fleece blanket. She had lost weight and was constantly feeling cold. She sat on the couch nervously biting the red polish that was chipping off her fingernails.

A plastic bag on the ottoman in front of her couch held a wig. The husband of one of her nieces plugged electric clippers into a kitchen outlet. Her nieces shouted out potential hairstyles.

Mowhawk.

Mullet.

Crystal laughed.

The razor’s buzz got louder as it sheared off the last of her hair.

Crystal’s long, thick red hair had always been a source of compliments. If she was vain about anything, it was her hair. Losing it, she said, was more difficult than losing her breast.

Crystal’s shaking hand reached up and touched the last tuft of hair above her left ear. Hands from her family followed, rubbing her shaved head. Someone placed the wig on Crystal’s head. She tugged and adjusted the flowing strawberry blond hair.

Crystal sat quietly for a moment before returning to the couch. Cartoons flickered, kids laughed. With one quick flick, she brushed the new hair over her shoulder.

“I want more. I know there’s got to be more. I can’t go through all of this without there being more. Without there being some good things.

“Maybe it’s not even that it will happen to me, maybe it will be something good that will happen to someone close to me that is real important that will make me feel really good, or maybe I get to help somebody do something to help themselves, or feel good about themselves. I mean, to me, that would be wonderful, a wonderful gift …”

Time after time, Crystal’s life keeps getting taken apart.

It’s her labor to pull it back together.And so the wig joined her trophies and the green-eyed dolls on her dresser. They are, together, a collection of struggles overcome. They can be felt, to remind Crystal she will always have a well of strength inside herself to draw from.

On a morning after the party, a mirror over the dresser reflected Crystal’s bed and the quilt that rose and fell with every breath.

The alarm went off.

She arose, to take on another day.

Her bare feet touched the carpet. She put on her robe, grabbed her purse, inched around her bed and headed for the door.

Stepping slowly, her hand reached for the banister.

Fourteen stairs down to the couch, to the promise of another day.

Crystal finished chemotherapy in January.

She struggled to pay bills and was at risk of defaulting on her mortgage. She decided in June to ask her lender to allow her to sell her home for less than the amount that she owes, something called a short sale. It sold in September.

Crystal is regaining weight and much of the strength she lost while undergoing chemotherapy. A recent medical examination found no signs of cancer. She hopes to find a part-time job soon.

And her hair is growing back in red curls.