Tuesday, February 18, 2014

My Brother: The Boy Who Overcame It All

Brian James Thompson. Born February 22, 1993.

     What is there to say about Brian? Everything and nothing. Everything because there is so much to his story. Nothing because it's near impossible to formulate words that accurately express all there is to his existence.

     Throughout his entire life, we've always been told what he couldn't do, the things he'd never be able to accomplish. As a kid, he was diagnosed with Autism Spectrum Disorder (ASD), among other things. Doomed, as the experts would say, to a life of struggling through school, not understanding social situations, being unable to see outside his "own world" (a characteristic of ASD) and relate to other people, not expected to graduate from high school, not expected to succeed. As a family, none of this was easy to swallow. No family wants to hear the levels of supposed ineptitude their child possesses. Nobody ever really bothered to tell us his strengths, how he may be able to overcome any of these deficits. Sure, inevitably people would tell us things we already knew like "he's a sweet kid", "you're lucky to have him", etc. But that never really lessened the sting of the negativity that comes along with the labels they put on him.


     Brian's an interesting person. Always has been. Growing up, he kindled an intense interest in Star Wars, Star Trek (yes, he subscribes to both fandoms, don't ask me how), the Titanic, Pompeii, and anything sci-fi related. He'd always take it upon himself to "research" these things on his own time, checking out books from the library, watching documentaries, asking people questions, etc. Pretty soon he became quite knowledgeable in these fields of interest, and could easily hold informative conversations with people about these things. In the early stages, it was easy for him to tell you things, but reciprocal conversations were a struggle for him. The fact that he was so apt to learning about these topics of interest to him was an initial indicator that maybe he wasn't so cognitively impaired as the experts would have us believe. That wasn't supposed to happen.

     As he aged, his interests remained the same, although he did become quite an avid video gamer. He took to gaming like a fish to swimming. Interesting, because playing video games involves a fair amount of fine motor skills, an area that he was always supposed to struggle in; that wasn't supposed to happen. As he got older his conversational skills also improved; he became less and less shy, and began to understand turn-taking within conversation, allowing the other person to take part rather than just being an informational monologue. Improvement in relational/conversational skills? That wasn't supposed to happen.

     In high school is when he really started to come out of his shell. He was flourishing in his classroom at school, both socially and academically. He was now actually initiating conversations, and conversations regarding the other person rather than himself or his own interests. He was asking people how THEIR day was going, what THEY thought of whatever movie they saw on the weekend, etc. Strange, because the experts always thought that it was an insurmountable barrier, for Brian, a kid with ASD to think outside of himself and be able to express his care for others so explicitly as this. It wasn't supposed to happen.


     One day, Brian was sitting in a chair on a football field. The football field at Chatsworth High School. He wore a burgundy cap and gown, and sat in the back row with two other classmates. The announcer calls his name, and Brian walks up and receives his high school diploma. According to the experts, that was never supposed to happen. The year is 2012. The day is approximately a little over a month after he received a heart transplant.


     Oh yeah, that's another thing about Brian. In April of 2012, Brian had viral myocarditis, a rare disease that basically destroys your heart. He was hospitalized; his kidneys and liver stopped functioning; his heart was enlarged to 3 times the size it was meant to be, and was functioning at just 15%. After a stay in the ER, a geriatric floor and a psych ward (the only rooms they had available for him), and ICU, he was transferred to USC Keck Hospital. The outlook was bad. With a heart functioning at just 15%, and other organs shutting down, there was nothing the doctors could do for him. I got a call one night; they'd put him on the list to receive a heart transplant. The doctors said he had maybe a few weeks to live, if things didn't get worse. My world came crashing down upon me. The wait time typical for a donor heart to come through was 6months to a year. He had weeks, if that. Basically, he wasn't supposed to survive.

     3 days after I got that call, a donor heart came through for Brian. That night, they did surgery. They transplanted an entire human heart into him, removing his old dead one. They gave him a second chance at life. The surgery went well, there weren't many complications. He made it, he survived. That wasn't supposed to happen.

     He stayed in the hospital for about 15 days or so. Many times throughout the entire ordeal, I spent the night there at the hospital with him, sleeping in a chair next to his bed. In his critical conditions, nurses would come in at all hours of the night, hourly, in fact, to check his vitals and draw blood. I'll never forget it; when the nurse would come in to take his blood or check his vitals, he'd look at them and smile, and ask them how their shift was going. This kid was dying, he wasn't supposed to be smiling. This kid had ASD, he wasn't supposed to be initiating conversations about how someone else's day was going. The nurses would always be taken aback by that; they'd tell him how their shift was going, and tell him it was sweet of him to ask. He'd just smile and nod, typical Brian style.

     When the nurses would come in during the middle of the night, they'd ask him a series of questions. If Brian thought they were being too loud and might wake me up (he thought I was sleeping, although clearly I was not), he'd put a finger to his lips and make a quiet "shhhhhhh" noise, then point to where I was sleeping. He'd tell them in a whisper, "Don't wake her up. That's my sister. She's studying to become a special ed teacher; that's a really tough job, but she can handle it." The nurses would look somewhat perplexed at this unnecessary information, but tell him that he must be so proud of me, to which he'd grin smugly and say "Yeah, she's a great sister, she's so smart.". To have pride in me, to talk about MY life to someone who was currently inflicting the pain of a blood-draw rather than focusing on himself and his current circumstance; that wasn't supposed to be possible. In any circumstance for any person, it certainly isn't normal.


     One day, Brian was in a wheelchair. I stood next to him, outside of Keck Hospital, along with his nurse. Holding a huge bouquet of red heart balloons, both of us donning USC sweatshirts, we were there at the curb, waiting for the car to pull up. Our mom brought the car around eventually, the passenger door was opened, and we helped him into the car for the first time since we drove him to West Hills hospital over a month prior. Brian was going home from that hospital. That wasn't supposed to happen.


     The thing with Brian? He's always been the most sweet-hearted, kind, loving, and interesting kid. That never changed, that never "developed". What changed was the ways he was able to overcome the things holding him back from expressing those feelings and actions. The more he was aware of what was holding him back, the more he was able to come up with strategies to overcome those obstacles and learn to relate to others, to express interest and emotion in relevant ways. Once he overcame those obstacles, he became an unstoppable force of absolute humility, kindness, and love towards others.

     His ability to overcome the limitations set upon him by others has inspired many. Ask anyone that has worked with him in any setting; they all have nothing but good things to say about him, and they'll tell you, too, that his story is one of inspiration and uplifting motivation. He's an encouragement to many, including parents of children with ASD. The things he's overcome shed light on the fact that not everything about ASD is concrete, and obstacles previously believed to be impossible to overcome can, indeed, be overcome. This hope, this precious light and insight to this issue is invaluable to parents of, and even individuals themselves with ASD. Brian's story is a story of hope and inspiration.

     For me, as his older sister, I've had the absolute privilege of watching him grow up, watching him overcome these labels and diagnoses firsthand. I was there with him when he was dying in the hospital, I was there the night they put the new heart in. I was there the day we took him home. I was there the day that he graduated high school. I've been there and seen everything that wasn't supposed to happen, happen. And through it all, I've been inspired.


     Brian is my inspiration, my driving force for the career I'm pursuing. I'm pursuing a bachelor's degree and teaching credential in special education. I want to teach special education at the high school level. Why? Because I've seen what someone who's been labeled and restricted by things that aren't "able to happen" for a kid with a diagnosis in special education overcome all of those things. I've seen my brother overcome it all, I know that he's not the only kid with special needs that can accomplish this. I'm in this for the success of the students; I've gotten a small taste of what it looks like to see someone succeed in this situation. I'm starving for more. I strive to see these kids freed from their labels, accomplishing what they're able to accomplish, regardless of any diagnoses or restrictions in ability imposed on them by "experts". Seeing my brother shirk the labels, disregard the diagnoses, ignore the implications of his inabilities; that has inspired me to do what I'm doing.

     I've never met anyone like Brian. He is the kindest, most loving, most loyal brother to me. And not just to me; he's an absolute saint, the way he treats others and even goes out of his way to ask how they're doing. He asks me to take him shopping for gifts for people on holidays, completely his idea, with no prompting from me. When deciding what to eat for dinner, sometimes he'll ask "well what do YOU feel like?" He goes out of his way to give homeless people a dollar and change. On Thanksgiving, he asked me if we could buy a homeless man a hamburger from McDonalds, because "nobody should go hungry on Thanksgiving". Brian is a kind and charitable human being, and a person that the world can learn so much from. Brian thinks beyond himself, and concerns himself with the well-being of others. That's not supposed to happen.


     In a few days here, Brian's going to be 21 years old. The doctors never thought he'd see this day; heck, for a while there, WE never thought he'd see this day. Currently, Brian is in his second year at West Valley Occupational Center (community college) in a vocational studies program. He has a job, working for an auto-insurance company. He takes the bus to school and work, and lives a happy life, doing things for himself that nobody ever thought possible. Brian is a success. Brian is an inspiration. Brian is a testament to the ability of God to work through anyone, any situation, any time, and just do insane things that by all rime or reason, aren't supposed to happen. Brian realizes this, and will even refer to himself as "the miracle child". He knows that where he's at is not where anyone ever expected him to be able to be at. He knows that he broke the mold when it came to his diagnoses and labels, and he knows that he definitely shocked and defied medical science when that donor heart showed up just in the knick of time. He knows it's all a God thing. And he's proud to share his success stories with anyone who wants to hear more.

     As his sister, I couldn't possibly be more proud of Brian. The things he's overcome, the insanity he's survived, the person he's become; I can scarce believe it to be true. My brother is absolutely amazing. And throughout it all, he remains so humble about everything. Just talking to him, you'd never know the kinds of things he was told he'd never be able to do when he was younger. You'd never know the horrors this kid endured as his heart failed and then got transplanted with a new one. You'd never know that this kid had the odds stacked against him. But if you did, you'd know that this is one kid that overcame all the odds. This is one kid that can accomplish anything. And you'd know that there's hope, for anyone in any situation. If this kid can do all that, so many things are possible.

     The experts never told us that Brian would be the kindest, funniest, sweetest kid in our lives. They never told us that he'd be my best friend, the one that I'll defend with my life. They never told us that he'd be an inspiration, that he'd by MY inspiration. They never told us that he'd go to college and have a job and independent transportation. They never told us that he'd be a success. None of that was supposed to happen. But it did. And thank God that it did.


Brian James Thompson. Born February 22, 1993. The boy who overcame it all.