This is the final piece in a four-part series exploring University of Oregon junior Calee Williams’ diagnosis of a transverse myelitis. You can begin at part one here.
January 2014 – Series of treatments
Calee Williams is frustrated. Another inconclusive appointment two days ago has left her noticeably unsettled.
“To hear that we still don’t know is the most upsetting thing,” she says wearily. “Personally, it’s a better experience to hear bad news than nothing at all.”
Her doctors were trying to localize where her potential brain tumor is through a series of shock tests. But the tests ended without answers.
Even worse than the confusion for Calee is the disappointment – not in her doctors, but in herself.
“It’s almost like a kind of distrust,” she says in a tone edging closer to defeat than ever before. “I feel like my body has kind of lied to me in a way. I don’t believe in myself as much.”
The consistency of the beeping heart monitor is nearly in perfect sync with the drip of the IV bag hanging above Calee’s bed. Antibodies flow from the clear, plastic bag through a narrow tube that connects to a PICC line that disappears into the cephalic vein of her right arm.
The PICC line — peripherally inserted central catheter — was surgically inserted several months before, a common procedure for patients receiving prolonged antibiotic therapy. The line is threaded into the vein for the intravenous delivery of immune globulin – an antibody used for patients with immune deficiencies and other various conditions. The usual veins in her arms and hands have been picked so often they now lay too flat to insert an IV line, so the PICC line was her best option.
She lies curled under a fluffy cheetah print blanket wearing a green Duck football T-shirt in the dim, windowless room in the corner of PeaceHealth Hospital’s Infusion Center just a few blocks from campus.
It’s the end of January and Calee’s fifth IGG treatment. She comes for an infusion once a month – a seven-hour process – to restore her antibodies to normal levels, ever since her relapse back in August.
Her condition – transverse myelitis – results in viral infections, abnormal immune reactions and insufficient blood flow through the 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.
For Calee, these symptoms are partially alleviated from these monthly treatments. She feels at her strongest within a few days of each treatment. Usually, transverse myelitis is outgrown with time but can take anywhere from a couple of weeks to a couple of years to fully recover. The chances of relapsing are as rare as 10 percent, and Dr. Miguel Estevez admitted to Calee that he had never seen it happen to a patient before. But back in August, Calee’s symptoms had returned in full force and Estevez concluded that she was one of those few relapses.
But there’s more on her mind today than her unsatisfying trip to the doctor earlier that week. Fall term she got her first D in a course and her mom wants to pull her out of school while she’s undergoing treatment.
“We had to go through family therapy to help her understand my stress last term and how it impacted my grades,” Calee says.
It wasn’t an easy decision for her mom, who worried about her daughter having too much pressure with school and not being able to focus on her health. “We told her we would take it term by term,” Cindy Williams says, patiently explaining the position that any worried mother would take. “I didn’t want to bring her home and have her have nothing to look forward to. We just had to figure out what the best thing is for her health.”
The therapy sessions ended with a consensus that Calee could stay in school for winter term, given that she is able to maintain her grades.
The pressure of understanding that this term is Calee’s last chance to stay enrolled is burdening, yet it is matched with relief and gratitude for the opportunity.
“People are giving my mom a hard time for letting me stay in Eugene and not forcing me to come home if my health is so serious,” Calee admits. “But I think she’s an amazing parent for letting me stay. It wouldn’t make sense to go home. I have no goals there. Here, I do.”
A series of high-pitched beeps set off by the now emptied IV bag lure a curly haired staff nurse in pink flower-print scrubs into the room. “Oh it’s you – hello!” says Annie, Calee’s favorite nurse. “Looks like you’re done early today!”
She detaches Calee from the IV drip and slips the cuff around the patient’s arm to take her blood pressure.
“Calee is our favorite patient because she’s got the best personality out of everyone,” Annie says as she jots down the numbers on Calee’s charts. “We just liked each other right away because I have a daughter her age – she’s the youngest patient in here.”
Calee’s youth is painfully obvious in the hospital corridor. Several elderly patients have slowly made their way past her door, leaning their weight against metal walkers or submissively slumped into a wheelchair.
Calee doesn’t belong here.
May 2014 – Climbing to the viewpoint
It’s a longer, steeper trek than the walk to the river the week before. Calee pauses frequently to rest before continuing the hike up Spencer Butte.
“I sometimes think about being back in the hospital,” she says in an oddly cheerful tone. “I replay the moments when the doctors told me to squeeze their fingers and I couldn’t do it, or the day the paralysis went up to my neck, or the nights I thought I wasn’t going to live.”
She pauses to catch her breath. She’s been talking less than usual, concentrating her energy on the uphill climb – something she’s been doing more regularly between her spring term classes as her health stabilizes.
“But it’s inspiring to remember those lows and see how far I’ve come. I can walk. That’s why I do this hike. I want to experience these moments of being able to walk by myself. To reach a goal. It’s symbolic.”
She follows the dirt path as it curves around a set of Douglas firs, whose thick trunks hide the foreboding incline on the trail behind them.
Back in October, Calee sat in her living room with her two cats, shuffling through medical records. The freshness of her disease and its uncertainties still tipped her off balance and forced her to question the finiteness of life. Without prompt she said, “You know, I’ve changed my perspective recently. I’m prepared to die.”
It was silent for a long moment.
“I’m prepared for bad news but am not going to dwell on it because it’s out of my control,” she continued in a tone brimming with self-assurance, not defeat. “That’s been the hardest thing to learn – to be ready for the unexpected but still continue to live.”
Now, over seven months later, it’s clear how unwaveringly committed she’s stayed to this presumptive and preternatural statement. The months that followed that October interview were anything but easy between the countless doctors appointments, invasive tests, procedures and treatments, nights of chronic pain, days of exhaustion and the fight to continue her education.
But a year of unanswered questions created an ability to accept. Her erratic health conditions forced her to adjust. Learning how to prepare for bad news facilitated an urge to continue forward.
As Calee hikes the remaining hundred yards to the rock where she has sought solitude several times before, she savors a moment of quiet observation at the view before her. It’s a magnificent outstretch of trees whose top branches peak out through a thick sea of clouds – so smooth and dense it’s as though they would hold the weight of your feet if you could just step out and walk across their soft surface.
She looks content. At peace. It’s clear that she has gained insight that is perhaps beyond the reach of most 20-something-year-olds.
Something that maybe has more to do with perspective than circumstance.
Something that might have to do with learning how to become more mindful of thought and more present in time.
Something perhaps about developing a new sense of consciousness – with a deeper devotion to acceptance and appreciation for resilience.
I eventually break the silence, curiosity gaining the best of me, and ask what she’s thinking about.
She glances back down the trail we just trekked up before resettling her gaze on the scene in front of us. She takes in a deep breath and beams.
As she slowly lets it out she breathes four simple words.
“I just did this.”
Follow Julianne Parker on Twitter @juliannedparker