In spring 2012, Jonathan Moon started getting hand cramps and muscle spasms in his arm, as he felt himself slowly losing control of his own limb. There were instances where a bag would slip from his hands or he’d miss a pass in basketball, and he was unable to lift things or use his arm like before. The problems became more frequent, and he was left puzzled and scared.
“It felt as if someone was pulling something out of my hands because I was so unaware,” Moon said. “If I just held something, it would slip.”
He had his first doctor’s visit in October. They confirmed something was wrong: there was serious muscle deterioration in his left arm, but they were unable to find a cause. Daily motions, such as strumming chords on a guitar or gripping a football, became challenges. A process of MRIs, blood tests and visits to various doctors, specialists and chiropractors began. Moon and his family were advised to see an occupational therapist between appointments to maintain his strength.
His first appointment with the occupational therapist was discouraging: he played with Play-Doh and the therapist left the room without a word. Moon continued seeing doctors and received a diagnosis from a specialist in 2013: Monomelic Amyotrophy, or Hirayama Disease, a degeneration of motor neurons responsible for controlling voluntary muscles, according to the National Institute for Neurological Disorders and Stroke. The condition occurs most often in Asian males 15-25 years and there is no known cure or treatment.
“If it was a solid diagnosis, I might’ve been a bit more relieved because they at least know what’s going on – but it wasn’t,” Moon said. “The uncertainty didn’t make me feel comfortable or better.”
Appointments continued into Moon’s first semester in college at Virginia Tech. He missed classes and drove four hours home in Springfield, Virginia, then an extra hour to John Hopkins’ Hospital in Baltimore, Maryland, for weekly tests. In January 2014, a specialist at the Nerve, Bone & Joint Institute in Washington, D.C., who had been working with John Hopkins Hospital, concluded it was Hirayama Disease. Because of the effort these doctors had put in, Moon felt better about his situation. They referred him to a different occupational therapist.
“The biggest thing for me was that the occupational therapist showed she cared,” Moon said. “I never knew her prior, but seeing her smile and treat me warmly gave me a feeling that she wanted to genuinely help me.”
However, he was advised to postpone his next appointment until he had a solid diagnosis. This left Moon and his family at a standstill before the start of his sophomore year. Over the past two years of stress and uncertainty, Moon has relied on his faith, family and friends, who look out for him. There are stressful times when he longs for the arm strength he once had, especially because music, a huge part of his life, has been taken away. He once played the drums, clarinet, piano, guitar and bass. His two sisters and parents worry for him, and Moon feels guilty and stressed from seeing their uneasiness.
“I really appreciate them caring for me and loving on me, but sometimes I get scared that I’m burdening them, even if that’s not the case,” Moon said.
Some of his friends are unaware of his situation, and even some people who are aware, forget. Activities requiring the use of his arm fuel the most frustration: people attribute mistakes, such as missing a pass in basketball, to a lack of athleticism instead of physical inability.
However, challenges reach beyond sports and music, occurring on a daily basis: when he buttons his shirt, ties his shoelaces or types essays. Sports time is limited because the more he uses his arm, the more pain he feels. He hides his pain and does not like to take precautions, such as wearing a glove on his left hand, to avoid funny looks. ByungJun Lim, a sophomore, has been a close friend of Moon’s for the past three years and currently shares an apartment with him and two other friends. Lim encourages Moon and cites the challenges in helping without a doctor’s knowledge or personal experience.
“If I have a sprained ankle, I would just suck it up because it would get better; for him, there’s no knowing what’s going to happen,” Lim said. “It’s really hard to encourage him. I don’t want to give him any false hope, but I really do feel for him.”
Moon acknowledges that teasing is a part of social situations. He understands that, since people are unaware, insecurities may be highlighted unintentionally. Like many of his friends, Moon wants to gain muscle, but he can’t. For him, lifting weights is dangerous, because they might slip out of his hands at any moment. He encourages other people to be considerate and careful.
“It’s given me a new pair of eyes not to tease people and not to assume about peoples’ situations, because you don’t know where they’re coming from and you don’t know what their situation might be,” Moon said. “Being in this situation gave me a new pair of eyes not to assume, but to get to know people, see where they’re coming from and try to understand.”
Jonathan Moon and Patrick Sihn, a sophomore at Virginia Tech and one of Moon’s three roommates, watch for a rebound off the wall of War Memorial Gym at Virginia Tech while practicing basketball one-on-one. (Photo Credit: Lauren Pak)
Friends sometimes apologize for his situation. Appreciative of empathy, he explains that there isn’t a need for an apology. He keeps his favorite Bible verse, 2 Corinthians 12:9, as his phone background: “But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly about my weakness, so that Christ’s power may rest on me.’”
When Moon questions why he has been placed in his situation, he looks to his faith to remind him not to be sad, but to be proud of his weakness.
“Faith gives me some sense of purpose: I don’t know what it is yet, I don’t know what is looks like, but I know that faith fuels it and gives me a sense of assurance,” Moon said. “Having faith doesn’t necessarily mean I’m going to be happy about it or accept everything that happens to me, but it’s there to catch me when I fall and helps me get back up and keep moving forward.”
Through doubt and insecurity, Moon remains positive and confident that God has a plan. Moon’s experience has inspired a career in occupational therapy.
According to the American Occupational Therapy Association, occupational therapists help people across their lifespans through the therapeutic use of everyday activities. Moon explains that this profession focuses on understanding peoples’ emotions and building strong client relationships, and believes that a willingness to help other people is most important in becoming a medical professional. With his parents’ support, Moon declared a psychology major his first semester of sophomore year and plans on attending graduate school for occupational therapy.
“I love being around people and helping people, and that’s one thing I think I’d be good at in this particular job: just working with people and trying to understand them,” Moon said.
As a freshman, Moon (right) planned to major in business, but after deciding on occupational therapy, declared a Psychology major to learn how to understand people better. (Photo Credit: Lauren Pak)