Foreward By Chris Hofstader
Keri Svendsen joined the team that is evolving this web site from my personal blog to what we are now calling "The World Blind Herald," a fully featured news, sports, opinion, fashion, culture, art, science and nearly any other subject related to blindness online magazine relatively recently. She's one of the most interesting young (on my standards) blind people I've ever met and she has a ton of great stories to tell, she's a terrific editor who helps all of our articles become better and, in a short time, we've become pretty good friends. I'm looking forward to meeting her in about a week in person as she lives not too far from my Cambridge home from where I'm writing this.
Keri has a master's degree in forensic psychology and, as far as anyone I know who might know, she's the only blind person we've ever heard of who has worked with convicts behind the walls of a prison helping them with their discharge plans. She's been blind since childhood as she explains in this story, is very independent, highly motivated and she's real sweet too.
This is her first story for us, I hope you enjoy it and I'm looking forward to reading more of her work in the future.
How Keri Went blind
I never had perfect vision, but I had a high level of low vision. I can't remember my vision acuity level or any of those specifics. However, I wore glasses and used large print. I didn't need a cane or braille. I didn't even know what those were back then.
At first, I was sent by one of the top eye doctors in my area to the West Virginia University Eye Institute for my eye care. At the eye Institute I could get the best treatment possible he said. I would go somewhat regularly to one of their eye clinics. They have eye clinics all over the state, so individuals don't have to travel all the way to Morgantown where the Eye Institute is based. The eye clinics were great and gave me excellent care even though they had no idea why I had vision loss. They made sure I had my glasses and anything I needed to be a successful little girl.
I grew up in the 90s and the early 2000s, so technology wasn't what it is today. I used a big CC TV to magnify things so I could do my work. I have vague memories of watching myself write through the screen and thinking that was trippy. I had to always sit in the front of the classroom away from my peers due to my vision issues. However, they tried to get me as close as they could. I was walking through first grade like a breeze, and loving school like all my peers.
I started having headaches the summer before my first-grade year though. These headaches were severe migraines. They made it hard to focus, hard to sleep, and hard to hold food down. We found medications didn't work. I ended up going to school every day with one, and I stayed as long as I could each day. I threw up a lot so was sent home each time it happened. Some days I was throwing up before I left so I was kept home. It was not pleasant at all and the doctors couldn't determine why.
In October of that year I suddenly started tripping over things. Not only should I have been able to see them, but they were things that had been in the same place for months or years. This went on for three days and then suddenly I couldn't see. Three days is slow compared to how many lose their vision in the blink of an eye.
My mom took me to one of the eye clinics. I first saw Becky who worked with the eye doctor. Becky started to run all the normal tests. Becky thought I was playing a joke, and that she could figure it out. I looked straight at Becky and said, "Becky I can't see anything." She knew then I wasn't a little girl playing a harmless joke on her parents. The doctor confirmed everything then ordered an MRI.
I suddenly had to rely on a teacher and aid to help me get all my work done. I couldn't do things on my own anymore. The Teacher of the Visually Impaired (TVI) brought me a telescoping cane. He taught me how to use it, and I started using a cane soon after going blind. Those canes really sucked!
November eleventh came and that was the day my on which my scans were scheduled. I had a bad one that day, so I stayed home. My two sisters at the time were at school, my dad was either at work or looking for work I don't remember which, and my mom, who was taking some classes, was at school. I was watched by my grandma who didn't work. I ate breakfast or tried to and watched tv. My grandma then took me to the hospital where my mom met us.
There are a few different types of MRI machines, but I was put in one of the stand-up MRI machines. I'm not sure why they chose this for me. Maybe because I was so young, and my mom could be closer. Afterwards they told me I was fine to go on home. We went to McDonald’s (a favorite of mine) for lunch. My mom went back to school, and I went home with my grandma who dropped me off at our house right next door to ours and went to park her car. She knew if I needed her, I'd come over to her house, and she routinely checked on me. Our family lived in rural West Virginia far out in the country on grandma's property. It was safe at that time to let a child who would just sleep and watch tv be alone in the house next door. We didn't even lock our doors back then. Now this seems so unsafe to me!
As I walked through the door the phone was ringing. I stumbled around not quite used to being blind. I tripped over a few things along the way. I felt everywhere I could think of looking for the cordless phone. I finally found it and answered that call. It was one of the receptionists from my family doctor. She asked to speak to my mom or dad. I told her neither were home, but I'd take the phone to my grandma. Off I went walking down the drive to my grandma's. She saw me coming so came out on the porch. I handed her the phone. I then went back to doing whatever it was I wanted to do. I'm sure at some point she had me take the phone back home.
My mom came home that evening in tears. I didn't understand what she was crying about. However, she told me as soon as dad got home grandma and grandpa were going to watch my sisters and we were driving to Morgantown. She said I was very very sick. She explained to me that we had to go to the big city hospital. I understood it the best a 7-year-old could.
It was around midnight when they loaded me up in the back seat with my favorite blanket and packed bags in the trunk. We then set off for the 3.5 hour to 4-hour drive to WVU children's hospital. We got there in the very early hours, and they were waiting for me. They rushed us right through, and before I knew it, I was in an elevator nearly asleep.
I had two major surgeries that week. The first was to drain lots of fluid from my brain. The second was to remove as much of the brain tumor as possible. I was diagnosed with Juvenile Pilocytic Astrocytoma (JPA). After a week I went home to finish recovering, but I had lost all my hair because they had to shave it all off. I also had 13 stitches. I had so much school work to catch up on as well.
I could go into more detail on what happened next, but perhaps in a different feature in the future. In summary though I took chemotherapy. JPA isn't normally cancerous and that is rare. I however was the lucky one with cancer. There is more to my story so stay tuned to read more at a later date!
As Chris wrote in the introduction to edition 20 of our digest, we're slowly in the process of converting this site from being strictly the blog of Gonz Blinko to being more of a fully featured information service for the blind. We publish the digest that you are now reading every Tuesday morning and it averages 65 articles per edition covering all aspects of blindness and blind people from all over the English speaking world.
Over the past few weeks, we've recruited other writers to join as regular contributors and we'll be covering topics ranging from science and medicine to sports to arts to music to the politics of the blind world, employment issues, do it yourself projects, fashion, culture and as much as we can find that might interest our readers.
The migration of this site from being Chris' blog exclusively is slow going and we chose to focus on content before we started rearranging the look and feel of the site. We're working on a new theme and will be moving quite a few things around. I think our readers, new and old, will enjoy this new way of presenting this information.
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