This is the first in a four-part series exploring University of Oregon junior Calee Williams’ diagnosis of a transverse myelitis. Parts two and three will be published online Tuesday and Wednesday. The final part will appear in Emerald Wknd on Thursday.

May 2014 – By the riverbank

Look at Calee Williams. You might never guess the year she’s gone through. She’s the typical 20-year-old college student – long blonde hair pulled into a clip at the base of her skull, jeans, strappy sandals, backpack and cell phone in hand.

Today we walk along the footpath towards the river on a mid-May afternoon – a symbolic trail whose familiar trek brings back memories of the days when she struggled to complete the journey.

“Last summer I could only make it to the stop sign,” she says gesturing behind us. “Slowly each day I was able to walk a little farther – a little closer to the river – until I finally made it one day.”

But today she walks steadily. Focused. More surely than she had the morning we first met in October.

“It’s consistent,” Calee says gesturing to the river.

Consistency. A whimsical notion holding so much significance to someone whose past year has been filled with so many uncertainties.

She tells me the doctors have come to the end of the road for treatment – that they can only recommend she go to the Mayo Clinic for further testing to solve her case, but the treatment would likely be the same. She and her mom deliberated the possibility for weeks.

In the end, they decided against it.

“But what about answers?” I ask, agape by the conclusion of her story. “Don’t you still want to know what exactly is wrong?”

“Why?” she asks. “Now it’s been almost a year and I’ve made it. I’m still myself.”

July 12, 2013 – The sudden loss of feeling

The fire alarm rings. Hundreds of annoyed students gather their things and file out of the classroom. Calee can feel a migraine coming.

After the students reenter the classroom and continue their interrupted psychology exam, a sharp pain pierces through her head. The words on the exam begin floating out of order. They rearrange themselves into a series of unidentifiable characters.

Her legs are numb.

She panics. Turning in her uncompleted exam, she makes it outside of the classroom where she collapses. She’s taken to the hospital.

After hours in the ER’s grim waiting room, Calee’s name is finally called. With each tap of the doctor’s fingers Calee’s spine erupts into pain, her senses misfiring from one vertebra to the next down the length of her back.

Seven hours of poking and prodding, blood samples and a spinal tap leave the doctors bewildered. They exhaust a list of possible diagnoses and conclude nothing is wrong with her.

They send Calee home with a bottle of pain medications and no explanation for her sudden symptoms.

July 14, 2013 – Waiting for answers

Nothing can be wrong with her daughter.

Cindy Williams sits on the couch next to Calee as they watch a movie and eat chicken noodle soup like all the other times her youngest daughter was home sick with the flu. She had driven to Eugene for the weekend to take care of Calee after what was surely only a deceptive and brief response to the stress of college.

Her daughter gets up and walks to the kitchen to get a glass of water, and Cindy hears a crash. She spins around and sees Calee lying on the floor, shaking.

Until this moment Calee hasn’t felt scared. But as she lies on the floor and looks up to see her mom’s eyes brimmed with tears and mouth agape, she is.

By the time she and her mom get back to the E.R., she has lost feeling up to her neck. She is unable to speak.

By Tuesday Calee is paralyzed up to her rib cage.

The doctors run more tests, but have few answers for Calee and her mom.  As the days in the hospital wear on, the seriousness of her situation begins to sink in.

 “I remember thinking, ‘what are they looking for?’ It was scary when it finally hit me that whatever it was, was a lot more serious than what the doctors were telling me.”

Discussions of exploratory surgery, steroid injections and blood transfusions circulate over her hospital bed. She can’t speak, move or feel anything except for the stabbing pain in her spine when the pain meds wear off.

As the days wear by in the hospital and Calee grows weaker she redirects her attention to her mother.  Memories of the construction accident that took her father’s life when she was a child resurface, and fear of putting her mom through more grief is a constant burden.

“After my dad’s death I couldn’t act like a selfish kid – I didn’t want to cause my mom any more stress,” Calee remembers. “So I wouldn’t cry in front of her when I was in the hospital.”

But her mom knows better. Cindy spends over a week at her daughter’s bedside, encouraging and reassuring her, watching movies and doing puzzles. She watches as her daughter perks up anytime a nurse, doctor or friend visits her room – cheerful and positive, unwilling to let vulnerability surface.

“All the nurses said they’d never seen a patient so upbeat – that was a common thread that continued through her hospital phase,” her mom says with a short puff of laughter. “She’s always been the happiest kid.”

But unlike the guests who came and went, her mom sees past the façade. Her daughter is as scared, exhausted and confused as she is.

No one is giving them answers.

July 14-21, 2013 – Regaining strength

Calee’s body is shutting down. By mid-week she has lost feeling up to her neck.

It isn’t until the day her mom gives her a sponge bath one afternoon does the stress of the uncertainties come crashing down on Calee.

“A daughter should never have to be bathed by her mother,” Calee sobs to her mom. “You should never have to see me like this. You shouldn’t be worried about burying your own child.”

Cindy grips Calee’s arm and forces her daughter to look at her.

“I wish this wasn’t happening to you,” Cindy says, her eyes watery, but tone steady. “You don’t deserve this, but you’re the only one who could handle it.”

That night Calee can hear the familiar screams of the woman next-door – tormented by some unknown misery. Her fear for her own health is at times crippling, but the woman’s cries inspire a new perspective.

“You get selfish in the hospital and start thinking, ‘this is all about me,’ but seeing others was a reality check that maybe what was happening to me wasn’t as bad as other people.”

This realization marks a turning point for Calee. On her sixth day in the hospital her strength suddenly begins to improve.

“I wanted to walk again,” she says simply. “I didn’t want to be another statistic.”

But it’s an uphill battle. Her doctors are preparing her to accept that she might spend the rest of her life in a wheelchair. But Calee’s focused. Each day she shows slight signs of improvement until finally one afternoon a nurse helps her onto her feet and guides her down the hall with a walker.

“That was the happiest moment I had all week. I kept thinking, ‘I can walk!’” she remembers. “It was the first sign that I was starting to recover.

August 7, 2013 – Transverse myelitis

The lights are too bright. Her mom is trying to make small talk in a vain attempt to distract her daughter – but Calee isn’t listening.

Though her health has stabilized some, she still tires easily and has no physical sensation. She has a keen sense that the news wouldn’t be what she wanted to hear.

 Three soft raps on the door wake Calee from a trance.  Dr. ­­­­­Miguel Estevez enters his office and takes a seat in front of Calee and her mother.

A funky sci-fi tie hangs tightly around his neck – a playful staple to his wardrobe, which juxtaposes the somber expression he wears on his face.

He speaks with the carefully acquired patience of a doctor accustomed to delivering bad news. Slowly. Gently.

“You have transverse myelitis,” he says. “Your antibodies are attacking your system and shutting your body down.”

The room stills. His lips move, but Calee can no longer hear as Estevez explains the disease. Select words break into her silent world.

Surgery.

Possibility of paralysis.

Cousin disease to multiple sclerosis.

Her blood pulses through her veins in intense waves of heat flushing her face with warmth before draining the color from her cheeks in a daze of faintness.

She stares at the sci-fi tie – its colorful planets spotting the black fabric. She hears her mom asking questions. And suddenly, she’s in the car driving home.

Further visits provide insight into Calee’s newly diagnosed disease. Transverse myelitis, or TM, has symptoms that are nearly identical to multiple sclerosis. It’s a relatively rare inflammation disease that causes extensive damage to nerve fibers of the spinal cord.

Most cases, including Calee’s, are idiopathic – their cause is unknown.

But the disease results in viral infections, abnormal immune reactions, and insufficient blood flow through the blood vessels in the spinal cord. The nervous system scars, interrupting communication between the nerves in the spinal cord and the rest of the body, creating weakness of the arms and legs, localized lower back pain, sensory alteration and extreme fatigue.

While there is no effective cure for the disease, it is usually outgrown and until then, treatments exist to reduce spinal cord inflammation and manage and alleviate some symptoms.

Recovering from TM usually begins two to twelve weeks after the initial onset of symptoms and can last up to two years.

More often than not, transverse myelitis is a one-time occurrence, but approximately 10 percent of cases will relapse. Calee is one of those cases.

But several weeks after her diagnosis, the results from a series of shock tests are concerning Estevez even more than Calee’s disease. Her nerve circuits aren’t properly connecting and the sensations in her body aren’t recovering as they should.

He suspects something else – something unrelated to transverse myelitis.

He suspects something in her brain.

Continue to part two here.

Follow Julianne Parker on Twitter @juliannedparker