The time has come again to say goodbye to my brother, James, as he readies himself for his second deployment with his Army Reserve unit out of Ohio. My brother is so special to me — he’s selfless, brave and has the best morals any American would hope for in a soldier. My brother also has multiple sclerosis.
Every time we discuss his disability, I learn more about him as a person than I knew before. My brother’s journey with MS began in 1999 when he had his first “episode” during a Junior Reserve Officers’ Training Corps competition in Florida. He describes an episode as being when his brain tells his body to move in one direction, but it moves differently instead. It’s a “message disrupter,” he says — MS disrupts any message the brain sends to the body or a muscle before it get to its destination.
During his JROTC team’s military drills, his body did different things than he wanted it to (or at least different from what he thought he was telling it to do). He knew the team’s orders were to go left, but his body went in another direction instead. He remembers the preparation the team put into its performance. He felt they were the best there — strong contenders to win — but deep pain and uncontrollable body functions impaired his abilities. He says it’s painful when his body’s muscles contract uncontrollably and there’s nothing he can do to stop it.
The next episode occurred while he was living in Indiana. He recalls trying to walk, literally not being able to move one of his legs and almost falling to the ground. He forced himself to think about walking and trying to move. This was when he knew something was seriously wrong.
Several years prior, when my brother was a student in middle school, a group of volunteers visited his school to talk about disabilities. In one exercise, they used a version of the telephone game to explain the effects of MS. One volunteer lined up the students shoulder to shoulder. The student on one end was the brain; the student on the other end was the muscle. The volunteer whispered a message into the first student’s ear (the brain) and told them to repeat it to the next person. The next person would do the same until the message had been passed to the last person on the opposite end of the line. At the end of the exercise, the volunteer asked the person at the end (the muscle) what they were told. Turns out, it was not the message the volunteer told the student at the beginning of the game. Just like in the telephone game, the message was changed between the brain and the muscle.
When I ask my brother if medicine helped in his journey with MS, he says, “no.” The medicine was too expensive and too intrusive. After six months of scraping together money to pay for prescription drugs and having to routinely administer his own shots, he stopped using the drugs and took a leap of faith in managing his health. He has done everything his doctors have suggested, like diet changes, to live the longest, healthiest life he possibly can.
Working at Paraquad has given me insight into different ways I can support my brother living a healthy, independent life. Learning about the benefits of something like peer support could prove helpful to my brother down the road if he faces difficult times. Encouragement and guidance from peers can help in ways that a sister wouldn’t understand. With that said, I look forward to our plan of somehow coming together later in life and living closer so we can build a family support system for our “gray hair years.”
My brother doesn’t think about his disability much these days, and he feels grateful to have gone more than a decade without much pain or an episode that caused him to lose control of his body. He has managed for 17 years without any difficulties or painful episodes.
But before he deploys this time, he must fight the military medical review board. The board is attempting to deny his medical waiver that would allow him to fulfill his orders and serve beside his fellow soldiers. From his experience, the opinions of private doctors and military doctors have been so different, conflicting and over-assuming. Despite his objections, doctors try to rigidly define what he can and can’t do. He knows better than anyone what he can achieve.
He’s fought this fight before and won. Again, facing obstacles but remaining optimistic, he talks excitedly about the day he’s supposed to deploy with his unit. It’s down to the wire, he’s already packed and we’ve said our goodbyes. I don’t want him to go, but he wants to go because it’s what he’s always wanted to do: be the best soldier he can be.