Hi -- my name is Scott. Dr. White
asked me to tell my story, and even though I'm a journalism major, I can't believe I'm writing this.
It was just before Spring break two years ago, and I was packing stuff in my car -- getting ready to drive down to Alabama with my roommates for a week. The
night before I had a bad dream -- don't remember what it was about -- a storm I think -- I remember seeing a lot of buildings that had
blown down. I woke up feeling strange -- uneasy. When the phone rang, my stomach tightened up and I suddenly remembered the
dream. It was my dad on the phone, calling to tell me to come home. My 16-year-old brother, who was in the hospital, probably wasn't going to
My parents lived only 30 miles away so I got there quickly and drove straight to the little hospital in the middle of town. My mom and dad
were there, and as I walked in, they met me and told me that he was already gone. My legs turned to rubber -- I was afraid I
was going to fall down. I was supposed to be prepared for this, but the reality was not like anything I had imagined.
Richard had muscular dystrophy and we knew since he was little that he would die young. For the last five years, he'd been in
a wheel chair, getting weaker and weaker. They said he died in his sleep from not getting enough air.
After the funeral at the end of the week, I went back to school -- I was a sophomore -- like my dad said, getting back to a normal way of life seemed
like the best thing to do. The first day back, I was in this lecture hall, listening to the professor, and it was so wierd--everything seemed
too clear or something. And I started to get mad--in my mind I was yelling at the guys next to me who were just quietly taking
notes--"HOW CAN YOU SIT THERE AND TAKE NOTES WHEN THERE ARE PEOPLE SUFFOCATING TO DEATH? DON'T YOU KNOW THAT LITTLE KIDS ARE RIDING
AROUND IN WHEEL CHAIRS AND KNOWING THEY AREN'T EVEN GOING TO MAKE IT TO COLLEGE?"
My grades got worse -- I couldn't concentrate.
I got put on probation I had so many D's and an F. Once in awhile I'd laugh at a joke, and suddenly the image of Richard in his
coffin would pop into my mind, and I'd feel guilty.
I never told any of my professors what happened--my roommates knew, but we never talked about it. I dreamed
that I was back at home and there was just this empty wheelchair in the hall. I had that dream several times. Then Mom insisted I go
and talk to the college counselor. I hated that, but I was afraid I'd flunk out so I went. It turned out
to be not as bad as I thought. When I told Dana, the counselor, that I kind of talked to Richard in my mind, she said that was my way of
grieving. For some reason, when she said that, I started crying. I went to a support group at the counseling office where there
were two girls and me -- Julie, whose grandmother died and Claire, whose father died. Later Jim joined the group when
his father died.
I learned how to talk about what happened.
My brother was a neat kid--he liked to read, and collected things, like junk, but things he thought were cool. He had a box
with stuff in it--like a cork with a coin in it, an acorn with a little cloth hat, a piece of dirty chain, and a tiny little handmade book that made a movie
when you flipped the pages, and lots more. I guess because he was in a wheelchair, and closer to the ground, he spotted things we didn't even notice. Our sister, Molly,
called it his junk collection and he'd say "It might look like junk to you, but it's my treasure, and I'm Rich--ard!"
He loved computers too and liked to play
games with kids all over the world online. He always seemed younger than other kids his age.
I remember when my parents told us
that he was sick. They had us sit at the dining room table and said he had a disease called muscular dystrophy.
Molly, who was only four at the time, asked if it was catching. Even though Mom was crying, she kind of smiled at that. Molly
knew that it was something serious because she came over and climbed up on my lap, and started sucking her thumb. For a long time after Richard
died, she acted different towards me -- nicer -- you know. I sure was glad when she was her nasty old self again :-) Then I knew she was feeling better.
Every time something changed, my parents would call us into the dining room -- once to tell us we were all going
to be tested for the disease, and again when Richard got his wheelchair, and when they told us he was growing very weak and might
not live to his twenties. The rest of the time we all sort of acted like there was nothing wrong. One time, someone came over to play with
Molly and commented on him being in a wheelchair, and no one said anything. We all acted like we didn't even hear what she said.
One of the hardest things for me to remember is the times when I was mean to Richard. He'd wheel to the door of my room and
ask if he could come in and I'd say "Go away you twerp! I'm doing homework!" Even though I tried to be nice, it was hard sometimes --
I just couldn't be his best friend all the time. But now, I wish I'd been more patient. It embarrasses me to think how I thought I was
so great cause I could carry him around--it made me feel so powerful. And I'd get mad sometimes when I had to help with his wheelchair.
I'm also ashamed of how I didn't want people to find out
my brother had muscular dystrophy. And ashamed of the times I was jealous because he got so much attention by being sick.
After I started talking about this stuff, I began to feel better. My grades improved and I got involved in campus activities. This year I volunteered to help with training for special Olympics, which was held on campus.
There I am --
carrying little kids and helping them with their wheelchairs -- by choice! Go figure. I miss him.
I said before that Richard was younger than other kids, but it some ways he was sort of quiet and deep -- and if I was upset, I just liked to be with him
to be quiet. He kind of looked up to me, so he always accepted my side of any argument or problem.
A couple months ago, I was nuts with everything going
on--digging a roasting pit for homecoming, work in the journalism office, people around me all the time. I walked to a park in town that's practically
empty in the middle of the day, and sat down by a tree. I was mad at a professor who gave me a C on a paper
I'd really worked hard on, and I wanted to be alone. It felt good to get away from everyone.
And then, you know, you'll think I'm crazy, but suddenly I felt like
Richard was there. It was just like before, being quiet together, except that now, Richard was inside my mind. And I could sense that he was on my side about the lousy grade
I got. He was supporting me, just with his presence.
I have a theory about death now -- that after people die, part of them continues to live
on inside of you -- even though you have to be quiet to notice it. I still visit his grave sometimes. After I see my folks, I go over to the cemetery and just talk to him in my mind. I told him I started picking
up odd little things and putting them on the window sill in my apartment. I found a bunch of blue twigs tied up in a little bundle and tied with red thread, no bigger than
two inches tall, and a coin with a square hole in the middle. I'm sure he's happy about that. He'd never forgive me if I just let them lie
there on the ground.