Adriane Thiessen was 13 when she came off the basketball court experiencing blurred vision and numbness on the right side of her face.
“It was like I was cut in half,” said the 24-year-old Cal Poly business administration student.
Thiessen, like many physically and mentally handicapped students, struggles to balance the demands of her life while fighting multiple sclerosis (MS). No one knows exactly how many people have MS, but statistics show approximately 300,000 people in the United States suffer from the disease, with 200 new cases weekly. A new case is diagnosed every hour, according to the National Multiple Sclerosis Society.
While Thiessen endures the aftershocks from her first symptoms, you wouldn’t know it. She is spunky and carefree, and there are no telltale signs she suffers from the disabling disease.
MS is an autoimmune disease that affects the human central nervous system, which controls all biological processes and motor skills, such as speech, eyesight and coordination. According to doctors and sufferers of the disease, its symptoms range and there is no cure.
“It’s like wiring a house and then stripping the insulation off the wires,” said Dr. Patrick Schwab, director of Academic Support and Department Student Programs and Services (DSPS) at Cuesta College. “The content is in the brain, but when the nerves go to access it and bring it into consciousness, the signals cross. That signal is then manifested some other way. For instance, you want your hand to move, but your leg starts vibrating.”
Though doctors struggle to pinpoint the how and why of the disease, the onset of MS includes temporary blindness, depression, bladder and bowel dysfunction, numb or tingling sensations and prolonged bouts with fatigue.
Connie Smith, development manager of the National Multiple Sclerosis Society Southern California Chapter, described MS another way.
“Imagine being trapped inside your own body,” she said.
Thiessen, clenching her fist then opening up her hand, said she has lost feeling in her left hand and can’t type or write with it.
“And right now I can’t really feel my left leg,” she said, tapping it with her right hand. “Sometimes I just have to drag it along.”
MS attacks the body’s immune system and targets the myelin sheath — a fatty-layered protein casing that protects nerves in the central nervous system. Doctors conclude that the soft sheath is repeatedly bombarded by white blood cells, called T-cells, which are part of the body’s defense. After scarring, tissue forms into lesions, which slow or even block the brain’s electric signals, causing both physical and emotional distress. These lesions show up as dark spots on an X-ray or MRI.
After the basketball game in July 2001, Thiessen said she visited an opthamologist, which, according to Schwab, is standard procedure when experiencing symptoms of MS.
“We actually thought maybe the dentist had hit a nerve or something because I had just gone to get a tooth filled,” Thiessen said. “Come to find out later, my family didn’t want to tell me they thought it might be MS because they didn’t want to scare me.”
According to Smith, studies show MS is two to three times more prevalent in women. And Schwab confirms Smith’s assertion.
“Yes, it is more prevalent in women, but I have no idea why. It goes to the issue of genetics. Whatever is causing the erosion of the (myelin) covering is a combination of genetic and viral infection,” he said.
Judy Finfrock was diagnosed with MS 25 years ago. She is bound to a wheelchair due to the severity of her condition. She lives in Paso Robles, where Thiessen grew up. She is also Thiessen’s aunt and mentor.
Doctors diagnosed her disease by process of elimination, says Finfrock.
Finfrock was 42 when she first felt numbness in the balls of her feet and fingertips, as if they were asleep. So, she visited several doctors hoping to find out what was causing the abnormal sensations. One doctor she saw diagnosed her with a brain tumor. Another said her condition could be a “number of 100 different things.” Not satisfied, she kept searching until a friend recommended a doctor in San Francisco who was using state-of-the-art technology — Magnetic Resonance Imaging.
“When I saw the MRI, it looked like someone had taken a shotgun and unloaded it on my brain,” Finfrock said. “I went home and cried for about three hours, then talked with a friend who told me, ‘You can either lay down and die, or you get on with your life.’ Well, I got on with life; it’s just the way I am.”
Finfrock suffers from Primary-Progressive MS, the second of four types, which include Relapsing-Remitting MS, Secondary-Progressive MS and Progressive-Relapsing MS. All four types share one characteristic: a slow deterioration of neurological function.
It is a complex disease and difficult to detect.
What makes the disease so elusive to doctors is its early symptoms are temporary. And, according to the National Multiple Sclerosis Society Web site, there is no definitive test for MS, only a series of neurological tests known as The Revised McDonald Criteria — which includes MRI, Visual Evoked Potential (VEP) and spinal fluid analysis.
With all this uncertainty looming in the scientific realm, living with MS is an unrelenting battle between mind and body for Thiessen. Planning her schedule around daily treatments and shuffling between disability service providers has made life an uphill battle.
According to Cal Poly Disbilities Resource Center access specialist Chris Parker-Kennedy, approximately 500 to 550 Cal Poly students walk through the DRC office seeking services. Students with health impairments, Parker-Kennedy said, not only include those with MS, but also diabetes, cancer, arthritis and cancer.
The DRC is bound by federal and state law pertaining to confidentiality in mental health as specifically stated in The American Disability Act, which prohibits disclosure of doctor-patient medical history to a third party. As a result, there is neither graduation rate nor an exact head count showing how many Cal Poly students actually have MS.
And because symptoms are temporary and not all noticeable, MS is a tricky disease, which can leave sufferers with little or no external signs of plight for years. For Thiessen, appearing ‘normal’ has its challenges, especially at Cal Poly.
“I missed so much school because I always had physical therapy or doctor’s appointments,” Thiessen said. “Like, one time I got to take a test home — I didn’t cheat or anything — but I thought it was nice of my teacher to trust me. Another time though, I e-mailed a teacher and never got a reply. I am thankful I look normal, yeah, but there are times when I felt teachers thought I was making it up. I don’t even know why I’d make it up.”
Instructors are considered “third parties,” and, thus, are left in the dark when it comes to really knowing the medical condition of their students, often having to make judgments of a particular student’s requests based on correspondence from the DRC or DSPS.
After her dream to play college basketball ended, Thiessen found a new love — marketing. She hopes to work for a nonprofit someday but says working full-time is tough because of constant bouts with fatigue.
Before transferring to Cal Poly, Thiessen attended Cuesta College.
“I think Cuesta’s DSPS is better just because there’s more understanding, more leniency when it comes to sudden illness — at least with my condition. I know there are others on campus who don’t just have ADD or test anxiety, and I just feel like people don’t understand what it’s like in our shoes. It sucks.”
The DRC offers a list of services that can be found on its website. Services include classroom note-takers, on-campus transportation, assisted listening devices, and priority registration.
“I feel there is more concentration (at Poly) on test anxiety and ADD, rather than autoimmune diseases,” Thiessen said. “Sometimes I wish I didn’t look normal. I feel since I look normal, people have no idea what I go through.”
Schwab said the first step in negotiating “reasonable accommodations” for students with health impairments starts with a doctor’s verification of said impairment. The second is an interactive forum in which a specialist develops a plan based on an individual’s needs. And once the accommodations are set, it is the responsibility of the student or service provider to meet them.
Law dictates what service a health-impaired student receives. It doesn’t, however, provide answers.
Thiessen said on a typical day she wakes up and takes a shot of Copaxone — a steroid that treats relapsing-remitting symptoms of MS — then swallows vitamins and anti-depressants. She also takes Arisept, a pill that improves memory tasks. These daily treatments attempt to thwart the disease’s plan to degrade the body.
Thiessen remembers when her brother, Ryan, helped cut and style her hair when MS had fatigued her body.
“She’s my little sis, man, and I felt helpless,” he said. “After I found out, I wanted to know everything I could about MS. My fear was that she wouldn’t be able to walk someday. One of the hardest things was when the doctor told her she wouldn’t be able to play sports any more because I know how much she loved being out there.”
Despite all of Thiessen’s hardships, she has accepted her reality and lives to “seize the day.”
As an advocate for MS in San Luis Obispo County, Thiessen said her team, Carpe Diem, will participate in “Walk MS,” an annual fundraiser intended to raise awareness for MS. The walk is April 17 and begins downtown at the mission.
“I walk because I can,” she said.