UW-Eau Claire student shares his story and the repercussions of his condition
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April 26, 2017
Reflecting on his past but refusing to let it impact his future
Spending 504 hours in the ICU confined to a space smaller than the average dorm at UW-Eau Claire with nothing but his laptop and basic television stations, Alexander Miller said the marathon battle against his incurable illness hasn’t lessened his quality of life.
“Everything I have gone through and even dealing with it now,” Miller said, “I don’t let it inhibit me. I think to myself, this is your reality. You can either take it for what it’s worth, or try to do something to make it better.”
Miller is a senior finance student, cadet in the Army Reserve Officers Training Corps (ROTC) and current residence assistant in Governors Hall. After attending college only a few semesters, Miller was diagnosed with neurofibromatosis type 2 (NF2), a hereditary condition where the body produces excess amounts of new cells, forming noncancerous tumors on the nerves throughout the body.
Despite his diagnosis, Miller said knowing many of the current cadets in the program, he registered for Military Science and Leadership (MSL) 202 through the ROTC program.
Major Matthew Kelly, Miller’s lead instructor for the course, said having a student like Miller a part of the program is also challenging ROTC to grow as a whole, teaching students who have different needs and limits.
At a young age, Miller said he started to lose hearing in his left ear to the point where he was almost completely deaf. In addition, he began to have issues with his left eye, only able to make out basic shapes and colors.
Miller then sought medical attention, and the doctors discovered scar tissue blocking his ear canal and a film over his retina. He said the doctors attributed it to birth complications and decided to remove both the scar tissue and the film, returning a small amount of his hearing and sight.
In the years following the surgery, Miller said he seemed to be back to “a normal life,” until his senior year of high school. Already aware of the hearing loss in his left ear, as graduation started approaching, Miller said he noticed the hearing in his right ear dissipating as well.
“(It’s) not a fun thing to be going through when you are that young,” Miller said.
He was then given a hearing aid for his right ear in hopes of restoring as much hearing as possible, Miller said. But, no matter how much he turned up the volume or readjusted it, it didn’t work. As a result, he went through his first semester of college at Eau Claire essentially deaf, unable to understand speech.
Frustrated with the results, Miller said his mother decided to get a second opinion and see the neurologist Meredith Adams, an assistant professor in the department of otolaryngology – head and neck survey – at the University of Minnesota. According to an article on the university’s website, after a procedural MRI, Adams found the real cause of the issue.
The radiologist informed Miller and his mother that the MRI image revealed a large mass, on the side of his left ear, in his skull that was pushing on his brain stem, corresponding with his diagnosis of NF2. Upon receiving the news, Miller said he was immediately rushed off to the emergency room where he was told they needed to remove it as soon as possible.
“When that (a tumor) is messing with stuff in your brain,” Miller said. “They told me ‘you are basically one slip away from killing yourself.’”
After a 36-hour surgery successfully removing the benign tumor, Miller then got a shunt, or tubing, put into his body running from the base of his skull to his abdomen to drain the spinal fluid that is unable to drain properly on it’s own and a metal platelet put into his left eye to help it close completely.
Miller then moved onto the ICU, where he stayed for three weeks learning how to balance and control his body again. Following his time there, he was discharged to physical therapy giving him more freedom, and he passed “with flying colors,” he said.
Currently, there is no cure for his condition, but Miller said he receives Avastin treatment, a chemotherapy drug delivered via IV every two weeks to stop new tumors from forming and maintain the growth of existing tumors. Although this treatment is only able to help manage his condition, Miller said he is grateful for it all.
“Honestly, it gives me back a quality of life that I am comfortable and happy with,” Miller said. “I don’t think I have had a bad day since.”
Looking to the future
Because of his medical history, Miller said he is not able to do as much physical activity as he would like, but he doesn’t let that hold him back.
Miller said he had been interested in military life and because he is unable to enroll due to his condition, he reached out to the military resources available on campus.
After approaching the ROTC program about registering in one of their classes, they decided to wave the physical requirement and allow Miller to enroll in Military Science and Leadership (MSL) 202.
Kelly said despite the knowledge gap between Miller and the cadets who have take the previous courses with the program, he puts in the extra effort to compensate.
“He more than makes up for what he lacks with his enthusiasm for the subject matter and the hard work he puts into getting caught up and understanding what we are talking about in class,” Kelly said.
Besides his work in the classroom, Kelly said Miller spends time in the ROTC lounge area and was able to use his skills from his major to help ROTC create a flyer for their program.
Miller said he does what he can physically, and if things get to be too much, he supplements the activity for a less demanding one. Also having the ability to ask other cadets for help if need be has made the transition easier, he said.
As part of the class, Miller said he gets an inside look into the military culture both physically and mentally; plus, he also enjoys “running around with them and shooting guns.”
Kelly said Miller is adapting to the class and through his work, Miller is becoming more physically active inside and outside of class. Kelly said he and the other cadets enjoy having him in the class.
“Having him in the class, he brings that different perspective,” Kelly said. “And he gets a little glimpse of what the military is like.”
Taking this course, Miller said, caused him to not only take on more physical activity through a sport he can and loves to do: golf, but also, he has taken away leadership skills that will help in in the future from watching upper cadets leading each group.
Looking back on his life so far, Miller said he is proud of what he has done and his dedication to continually work to improve his physical shape the best of his abilities, however, he doesn’t want his medical history to define him.
“I just got lucky,” Miller said. “I was lucky that this was discovered when it was and I was so young. You face your own battles, and really that was just a big one.”