Amy Longabaugh, who was diagnosed with Ehlers-Danlos syndrome two years ago, talks about her daily routine when she feels well enough to make it to class.
Amy Longabaugh wouldn’t change her past, but she thinks about it. She thinks about her career. She thinks about the present. She thinks about her future. She thinks about whether she will get to move out of her parents’ house soon. And she thinks about whether she would go back — given the chance — and change her genetic code.
She goes back and forth between yes and no, and thinks about how she only is going to get sicker, but still she maintains her own quiet hope.
A comparative cultures and politics sophomore, Longabaugh was born with Ehlers-Danlos Syndrome, or EDS, a genetic defect in the protein that synthesizes collagen, which essentially is in every structural part of the body. The disease can cause many symptoms, most prominently arthritis, joint deterioration and loss of mobility.
“I really want to believe that there’s a chance that someone could find a cure or that someone could find something that could even manage the symptoms I have or that something in my body will click and start getting better,” she said. “I really want to do something with my life because I feel like a failure most of the time. I look at everyone else around me who is able to do so much and I can’t.”
Although EDS is a rare disease and typically is more difficult to diagnose, Longabaugh’s case was made even more challenging to solve because she has been adopted since birth.
“I actually only found out about two years ago that I was never going to get better,” she said.
Longabaugh, who is secretary for the MSU College Democrats as well as the Council for Students with Disabilities, is one of many students with a chronic or life-threatening illness choosing to continue their education at MSU despite the extra difficulties they might encounter.
Bonnie Wheeler, a counselor at the MSU Counseling Center, said students who find themselves in this situation could benefit greatly from staying in school.
“Every case is different, but I think it’s always a healthy thing to work toward the future,” Wheeler said. “If you find something you love, and you get to do 20 years of work as opposed to 40 years of work, then it’s still fulfilling. … I think that makes life worthwhile in many ways.”
Worthwhile education
Sarah McPharlin hopes to become part of the field that gave her health back to her.
After receiving a heart transplant in 2001, McPharlin experienced an allergic reaction to some of the medication she took to help adapt her new heart to her body. The reaction caused her to have a grand mal seizure, ultimately giving her scarring in the right temporal lobe of her brain and requiring brain surgery in 2005.
McPharlin said growing up surrounded by nurses and hospital workers inspired her to become one herself. She said the nurses not only were there to help her through her health issues, but to be friends as well.
“I wanted to have the same impact on someone,” McPharlin said.
Shani Feyen, a chronic illness specialist with the MSU Resource Center for Persons with Disabilities, said the experience of attending a university for education or just the experience is something students don’t lose the urge for, even if they aren’t in the best health.
“Students with terminal or chronic illnesses often desire a college experience just like any other student,” Feyen said in an e-mail. “I believe this is appealing and important to students, regardless of whether or not they experience a chronic illness.”
For Longabaugh, the idea of not going to school is harder than going. Her dad, Steve Longabaugh, who is a specialist in the Department of Agricultural, Food and Resource Economics, said the balancing act of having an illness and participating in her education is sometimes impossible, despite his daughter’s efforts.
“She wants to be active but then she might be sick the next week and miss class,” he said. “It’s really a balancing act that’s difficult to navigate. It takes a lot of courage and a lot of perseverance to attempt to go to college when you’re that sick, but then you want to do it because you want to have a normal life.”
Barriers
Annaliese Durling calls her illness invisible. But when the nutritional sciences freshman has to use a wheelchair to aid her mobility, it’s a different story.
“When I use a wheelchair, there becomes a barrier between me and other people; a barrier that if you’re not in a wheelchair, you don’t understand,” Durling said. “It kind of starts to define who I am even though I’m much bigger than a wheelchair — I’m much bigger than my chronic illness.”
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Durling was diagnosed in 2006 with Postural Orthostatic Tachycardia Syndrome, or POTS, which causes a dysfunction of the autonomic nervous system, or the system that regulates organ function throughout the body, but can affect individuals differently.
For her, the disease causes a debilitating amount of fatigue. Because she lives with her family, Durling said it was easier to avoid situations where she would show symptoms in front of other students and friends.
“I’m kind of an outgoing person, if I can say that,” Durling said.
“I was really reluctant to tell others that I had anything wrong with me.”
McPharlin, who recently turned 21, has experienced what she would call barriers as well. Although what makes her look physically different can be covered, she said what sets her apart more than anything one can see with the naked eye is watching the carefree way her peers approach life.
“I’m a little jealous. I was perfectly healthy, then I caught a virus,” she said.
“When I see my friends that I used to be equal with, I get jealous in a way, I think, ‘What if it happened to them?’ They would feel the same way.”
Careful optimism
Among all the negative aspects of her disease, Durling said one positive to come from her illness is the way it has made faith come alive in her life.
“I feel I’ve had to cling on to what I believe and that God really does have a plan for me and this is his plan for me and this is the best plan (he has),” Durling said.
Although individuals with POTS, which doctors began diagnosing in 1999, are said to grow out of the disease within 10 years, Durling said she remains optimistically skeptical about her prognosis.
“I was told that in 2006, which was less than 10 years from 1999,” Durling said. “I have seen great improvement in the last five years. However, I’m still slightly skeptical.”
Amy Longabaugh said in comparison to many of her doctors, she still remains much more optimistic than a vast majority of them.
She said EDS has taught her, among other things, that she is strong enough to deal with anything life throws her way after what she already has been through.
“If I can get through this, I can get through anything,” she said. “If I lost everything, I’ve been through losing everything. I’ve been through losing my whole future before so I know that I could do it again.”
