—— Tell me about the group you started “Bike for Brains”.
It's non-profit fund raising organization that we've created that raises money by cycling in various events. Our goal is to help raise money for a "real-time" MRI (magnetic resonance imaging) machine for the Neurology department of Children's Hospital in San Diego. Having one would allow the neurosurgeons to get almost instant feedback to know whether they were successful in treating a situation before they close up. They way it is now, it can take days to know and process and interpret an MRI and then if there's a problem you would need another surgery. Having a real-time MRI could save time and reduce the number of surgeries patients need, put less demands on the surgeons time, and free up the operating room for kids that may not have enough time for another surgery. I was lucky, but some kids don't have time for a second or third operation all they've got is one chance. If the surgeons at Children's had one while I there I could have avoided one or more of my surgeries.
For our current event we have over 20 "Bike for Brains" team riders, that are riding and raising funds for every mile they ride. Some are friends and people from my school and others have discovered us, like the woman who survived her own brain tumor and is joining us. She was so thrilled that there was a ride for something like this. There's a wide variety of people from experienced cyclists to people who have never really ridden. This, our first fundraiser, is actually part of a much larger bike ride called the "Tour de Palm Springs", which has distances of 5, 10, 25, 55, and 100 miles.
—— A “real-time” MRI machine sounds expensive. What are your fundraising goals?
Very expensive! It's somewhere around $1.2 million. That's the reason we started "Bike for Brains", so the hospital could be better equipped and kids with special needs would have a better chance. We know there is a long way to go, so if we don't reach our goal this year, we hope to get it next year, or the year after or however long it takes. We won't stop not until we get it done. We've already over $10,000 but we've still got along way to go.
—— I understand you’ve had your own personal experience with brain surgery, can you tell me a little about your situation?
I have what are called intraaxial cysts, which means Iﾔve got multiple cysts in my brainstem some as large as a golf ball. Since February of 2002, I've had to undergo eight different brain surgeries at Children's Hospital to treat this, so I've kind of had first hand experience. My situation is particularly dangerous because the brainstem controls the autonomic nervous system, or the body's function and movement, as a result I've suffered some nerve damage that has weakened my right side and one eye. They're not brain tumors, they're cysts, which are fluid filled sacs as opposed to being solid. They're not cancerous, but because of their location they can be just as dangerous.
—— What let you know there was something wrong?
I didn't feel quite right things just seemed more difficult. At first, I was just forgetting things, then it just got harder and harder to concentrate and think, and then my grades started slipping. Up until then I was always a good student, so when I started to struggle with things more and more I knew something was wrong, but I didn't have any idea what. It was becoming more difficult to memorize anything and it was getting progressively worse it was taking me hours to do things that used to take a just a few minutes.
—— How did that affect your daily life?
Everything was different. School was tough, dealing with my friends was tough everything took so much effort! Day by day I was feeling more withdrawn and isolated, from everyone my friends and family. After a while my room became my best friend I did everything there. It was my escape from the world. In my room I didn't have to deal with anything it was just much easier. I was so frustrated and I'd get angry easily. I really wasn't a very nice person to be around. In some ways I felt like a wounded animal my survival instincts were taking over and I didn't want to be exposed. I couldn't really keep up with most social situations so I avoided them. On Friday nights for example, I was always in bed by eight o'clock. Saturday was the one day I felt okay, because I would wake up early and go "paint-balling". It was the one thing I still looked forward to because you're mostly on your own. Plus, it was a great way to work off all my anger.
—— How did you finally discover the cysts?
Well for the longest time we didn't. Something was wrong, but even though we had been seeing all kinds of doctors, they couldn't find anything. I was starting to have physical manifestations, trouble writing. My right hand would tremor and I couldn't write anything more than a scribble, so we knew something was going on, but no one could seem to find it. Some doctors thought it was in my head, others said things like, "You're gripping too hard." Nobody was really sure they even thought I might be taking drugs, but I wasn't, and so it just made me feel even more angry and frustrated. My parents were trying everything and had asked the hospital so many times to do a CAT scan, but they wouldn't. Finally, after more than a year of pleading, they agreed, but just a week before my appointment something happened. I was in my room and my dad was helping me with a homework assignment, when I started seeing something I was having a visual disturbance. Everywhere I looked was this shadowy thing in the shape of a fan and it kept moving spinning! The image lasted for about 20-30 minutes and was followed by a horrible migraine. By that time we were already on the way to the emergency room. The ER thought it was just a migraine, but they did a CAT scan just to make sure, and that's when they discovered the cysts. They thought they were tumors at first, because cysts don't usually occur in that area of the brainstem. Immediately Children's Hospital sent an ambulance for me and then at Children's they put a shunt in my head, to drain the cerebrospinal fluid from my brain. All the ventricles (passage ways) were blocked so as the fluid built up it put more and more pressure on my brain, which caused a lot of my problems. Now I've always got a shunt there draining fluids because the ventricles aren't working anymore. They also performed a craniotomy which resulted in a partial loss of vision in my left eye and that really knocked me out.
—— Were you scared?
No, in some strange way I was relieved, because for a year and half there's been so much going on with me that I didn't understand. I knew that I wasn't taking drugs or doing anything else to cause this, but no one else knew that! Everyone was questioning what I was saying and I was questioning what was going on with me! It wasn't good news when you can see the cyst on your X-ray from 12 feet away, you know it's not a good thing, but I did feel kind of relieved. Finally, we knew what it was and everyone would believe me now we needed to treat it. Then when the doctors told me they hadn't seen anything like this before.
I actually felt better when they put the shunt in, but after the craniotomy it was another story. Actually the first stay at the hospital I wasn't scared. It just didn't hit me because so much was going on. The people at the Children's Hospital were great, the people in the ICU were always upbeat and took your mind off of being sick. The doctors explained things and took their time with us and really made us feel like we were part of the decision making process. The only problem I had there was the size of the beds. I'm pretty tall and Children's Hospital is used to treating little kids they weren't used to someone my size, so my feet were always hanging over the beds. They had to bring in extra-long beds and operating tables for me. I don't think I was too easy for them.
—— When did you get the idea you’d like to help others?
Actually, when I was in the hospital after my 6th or 7th surgery I came up with an idea to do something, but it was very vague. Until that time I was the first person that our neurosurgeons had seen with cysts in the brain stem. They hadn't seen anything like it, and so they sent copies of my MRI to some of the top neurosurgeons in the world in Montreal and Boston, but they hadn't seen this before either. So my case was pretty unusual. A few months after my 8th surgery, during one of my check-ups, the doctor told me that a four-year old girl he was treating had a similar condition and that what they had learned from treating me was being put to use treating her. It made me feel like maybe I had a helped a little and it felt good. I wondered if maybe I could help more people. How can I help more people?
—— So how did you come up with the idea for Bike for Brains?
I had been in the hospital for three weeks after my eighth surgery, and then resting at home and healing for three weeks. It was a trying time, when I came back from surgery I had no feeling or use of the right side of my body at first. I couldn't use my arms or legs and my lips and face were numb I was paralyzed on the right side of my body. So they operated again a few days later and got the big cyst and that thankfully restored some of the movement to my right side again, but I was still weak and sore. I could move but suffered some residual damage. I'm still very weak on my right side. The doctors had told us as long as we didn't do anything crazy and took it easy we could do anything within reason.
I hadn't done anything for weeks. I used to be on the water-polo team and loved to go surfing, but I had to give those up. Then one day my dad, decided enough was enough. I wasn't strong enough to do anything on my own, so he took me outside and put me on the back of his tandem bike and we went for a ride. It was the most fun I'd had in years! I just can't explain how amazing it was I was I was yelling and screaming and having a great time. At first my dad thought I was kidding around because I was yelling so much, but for me it was great. I felt alive again. For the last year or so it seemed like all I did was go to the hospital. I had been in and out of the hospital so many times I was either being operated on, or healing from having been operated on. So that feeling of being on the bike was unbelievably exhilarating!
After awhile, when I became stronger I started riding on my own. It was a good feeling, but we got yelled at a lot! In the beginning it was a bit scary, for me and my parents, but that's when we came up with the idea for Bike for Brains. Cycling was something that I could still do and that I liked doing. I can't run or walk very far, but cycling really worked for me and when my weak leg starts to get tired I can coast a little. My right leg still doesn't have the strength I'd like to have, and, but weﾕre dealing with it.
—— Have you set up your bike any different than usual?
I've got a black and white "Specialized" and it's got a few modifications thanks to my dad and Danno at Zeno bikes. We were looking for help setting up my bike and so my dad put out a request over the internet. A few days later he got a message from Danno saying, "I'm a bike fitter and I got word of Brian. If you bring him down to store with his bike, I'll fit him for free." It was amazing. So we went over there and he changed the stem, he locked in the right-pedal to help my leg, and he changed the seat for us, in addition to a number of other minor tweaks. Because of the nerve damage I suffered, my right knee "flops", so when I ride it tends to come in and bang the top tube of my bike. Without realizing it, my leg would become black and blue, so my dad engineered a special cushioned guard that runs from the front to the back and my mom made a cover for it. So far it's working pretty well. We've been fortunate to get a lot of support from so many people and that's made it all possible.
—— How do you feel on the bike?
I feel great! (smiling) I love it. I originally wanted to ride the full hundred miles, but due to some complications on my right side I don't think I'm going to be able to do it this year I'm aiming for 25 or 55 depending on how I feel. Some of my friends are going to be riding too so I'd like to go a little further, but for me the mileage is secondary now it's more about raising the money riding is a bonus. This is a serious cause but we're also going to have fun. Doing something good of benefit to others, doesn't have to be a burden.
(03-16-2004 issue, Interviewed by Terry Nicholas)