WHEN THE LIGHTS WENT OUT
how i lost my vision
1998 was a great year! My future looked so bright! I had just finished a five year Bachelor’s of Architectural Engineering program at Penn State University. My friend Chuck and I decided to take three weeks and drive all the way to California and back, visiting friends, national parks and monuments and several major cities along the way. What a great trip! I am so happy that I got to see a large part of this beautiful country before I lost my sight.
In September, I started working for a construction management company in Washington, D.C. In November, while working on an electrical and data upgrade at George Washington University, I started getting blurry vision in my left eye. At the time, I figured that my contacts needed replaced, and I would get around to it eventually. However, the problem kept getting worse.
Finally, in January of 1999, I went to see an opthamologist. After running several tests, the doctor sent me for an M.R.I. The M.R.I. showed that there was a tumor in the area at the base of my brain called the pituitary gland. The tumor was putting pressure on my optic nerve, and needed to be removed. The doctor chose to enter through the sinuses because that would be less invasive. However, he was only able to get half of the tumor that way. A week later, he did a craniotomy to remove the rest of the tumor. This procedure was successful and they were able to remove the rest of the tumor. I still had my vision after the second surgery, but a few days later, complications set in. Somehow, I contracted bacterial meningitis, and that is when the lights went out.
I spent the next six weeks in a semi-comatose state in the intensive care unit at Washington Hospital Center. Finally, around the end of March, I started to come out of the fog that I was in. I was sent across the street to the National Rehab Hospital, where they would assist me in “embracing my blindness”.
Finally, around the middle of April, I was able to come home. When I got home, there were a lot of uncertainties. I wasn’t sure what I was going to do with the rest of my life. You don’t see too many blind people tapping around a construction sight with their white cane.
The first thing my mom did was call the local golf course and inquire if they could put her in contact with someone that would be willing to help a blind person to play golf again. I have been working with this golf coach ever since, and I can honestly say that I am a better golfer now than I was when I could see. I also am involved with a blind bowling league, which is sponsored by Keystone Blind Association, and my dad and I like to walk in 5k races. We have even placed in our respective age groups on several occasions.
Also, we were put in contact with Blind and visual Services in Erie, PA, and they sent a mobility instructor to the house to help me learn to travel using a white cane, as well as someone to teach me Braille. I don’t get many letters in the mail that are Braille, but I love to play Solitaire and Spider Solitaire with my Braille cards, plus I have a Braille Sudoku puzzle with magnetic pieces that I am absolutely addicted to.
A couple of years ago I contacted my mobility instructor and reopened my case. I wanted to revisit certain areas of white cane travel in order to increase my confidence when placed in certain mobility situations. It was also around that same time that I started taking computer classes at Keystone Blind Association to learn the assistive technology program JAWS. JAWS, Window Eyes and System Access are some of the most popular programs the visually impaired people use to use the computer. By using keystrokes instead of a mouse, as well as a voice synthesizer that tells you where you are in Windows, a blind person can successfully navigate the computer. Thanks to JAWS, I can check and write e-mails, search the Internet, type letters and create spreadsheets.
assisting people with disabilities
I am also very involved with several organizations that assist people with disabilities. Seven years ago I was asked to join the Board of Directors of Disability Options Network, which is a center for independent living whose mission is: “To empower people with disabilities to live as independently as the choose”. I am chairperson of the Public Relations Committee and have been very involved with scheduling their golf tournament for the past seven years.
I also have been on the Board of Directors of Keystone Blind Association for the past two years. Last year myself and a group of my blind friends started our own local chapter of the American Council for the Blind. The state affiliate is the Pennsylvania Council for the Blind, and our chapter is called NCRCB, which stands for New Castle Regional Council for the Blind. Finally, last year my dad and I were asked to join the Hermitage Lion Club, which is located just North of us in Hermitage, PA. Lions International is a worldwide organization that assists people that are visually impaired by doing fundraising, doing eye screenings and providing glasses to people who can’t afford them.
When I am not busy assisting these worthwhile organization, several other things help to occupy my time. I am an early riser, so by the time the rest of my family awakes, I have already walked six miles on my treadmill or pedaled for 90 minutes on my recumbent bike. Thanks to a website called www.musicvi.com, I started playing the piano again a couple of years ago. The gentleman that runs this website provides people who are visually impaired with either tapes or CD’s that allow them to learn to play the piano or the guitar. Also, about eight years ago, my brother and I started Pappas Brothers Winery. We make several batches of wine each year, and give it away at Christmas time or for other special occasions.
On family and faith
Well, as you can see, I stay pretty busy. I can honestly say that the last twelve years have been very interesting. I have done some talks at one of the middle schools in the area. I start off by telling the kids that when I was their age, going blind later in life was what I feared most. My dad’s mother was blind, and I saw how she struggled daily to maintain her independence. It is amazing how God has a way of making you face those fears head on, making you realize that you can overcome those fears. I consider myself very blessed because I had a very strong support network of family and friends to help me get through this ordeal. Also, my faith in God played a huge role in my recovery. Once you place everything in his hands, knowing that he has a plan for your life, it makes things a great deal easier to swallow. I tell people that being blind just means that you have to “think outside of the box”. Most things I can do just as well, if not better than a sighted person. I JUST HAVE TO BE A LITTLE MORE CREATIVE IN HOW I TACKLE THOSE TASKS. Basically, if you want to do something bad enough, you will find a way to accomplish those goals.
testing the brainport™
Mark tested the BrainPort™ as part of a study at the University of Pittsburgh. We invite you to read his own BrainPort™ experience here.