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25 Years later…#ChangingLives25

mj-lcb-training-nyc-may-2004-2

(Caption: Mary Jo Thorpe, Times Square NYC O and M training, May 2004)

This month marks the 25th anniversary of when I went blind. Each year when the time comes around, I like to acknowledge it to myself in some way. It’s not exactly something I celebrate, but it’s not something I memorialize with sadness either. I guess I just like to acknowledge the passing of time for a life-changing event that really redefined me. Given that this year’s anniversary is a significant, milestone, I feel a desire to do something more profound to mark this anniversary, so I’m calling on the support of all my friends and family to assist me in this undertaking.

For those of you who may not know, I went blind at the age of twelve very unexpectedly due to an allergic reaction to a medication called Tetracycline—or at least this was the only thing we could point to as a cause. . Below I’ve shared my story with you for those who may be interested. I won’t sugar coat it and tell you that the rest of my life from that point on hasn’t been filled with struggles, tears, and frustration, but it’s also been filled with choice experiences, lots of personal growth, great supports, and tremendous opportunities that I could have never foreseen. One of the turning points for me after a period where I felt like I’d hit rock bottom with respect to blindness was enrolling in the Louisiana Center for the Blind, the leading blindness rehabilitation training center in the country. I could write volumes about how this experience changed my life and provided me with skills and confidence I didn’t know I was lacking. So, in an effort to commemorate my 25 years, I want to do something to give back to a cause that made such a difference in my life.

My husband, @Jesse Hartle (also an LCB grad) and I are organizing a donation campaign for the LCB. Our goal is to raise $25,000 by April 30th of this year. Yes, this seems extremely ambitious, but go big or go home right? Our lives have truly been impacted for the better and we want to give back  to something that is near and dear to our hearts.

We are inviting our friends and family to make a tax deductible donation to the LCB, even if only $5 or $10. Any amount will be greatly appreciated and adds up. To do so, please visit http://www.louisianacenter.org and click on the “Donate” button at the bottom of the page. There you can also learn more about how your donation helps to support programs for both blind adults and children—also a cause that is near and dear to my heart. . Also, when making your donation, you will be asked if you are making this donation on behalf of an individual. Please just type in “ChangingLives25”so that we can track the amount raised with this effort. Then we also ask you to share this link with your friends to help us spread the word. Thank you in advance for your help with this. Now, I’d like to share my blindness journey with you.

******

I lost my sight at the age of twelve due to an unexpected allergic reaction to tetracycline, an antibiotic that I’d been exposed to at various times in my life. Up until that time, I had been fully sighted– 20/20 vision. It all began in December 1991. Over Christmas break I started experiencing prolonged double vision and began to have terrible migraine-like headaches and pain down my shoulders and back. My mom took me to see our pediatrician and he passed it off as flu-like symptoms and said just to rest and drink lots of liquids. I was pretty miserable over all of the holiday and things continued to get worse. I remember going Christmas shopping with my mom and actually lying down under the clothing racks in the store while she looked at things because I felt so terrible. I even went to a chiropractor a few times to see if there was some kind of pinched nerve causing all the pain and double vision.

On January 2nd, (a Thursday) after offices reopened and things got back to normal with the new year, my mom took me to her eye doctor for a checkup. He ended up sending me for a CT scan and later announced to us that it wasn’t a tumor. What? This was completely not something we were expecting to hear as we didn’t’ even realize he suspected something of that nature. He then proceeded to refer me to a neuroopthamologist at the University of Utah Medical Center. I had another couple of checkups that afternoon there, an MRI, spinal tap, and was admitted to the hospital that evening.      I was diagnosed with a condition called Pseudo Tumor Cerebri which basically means false tumor on the brain. Apparently I had a spinal fluid build up that was causing the pressure headaches and effecting my vision. Over the next three days, I had four spinal taps and countless examinations.   As you may imagine, this was quite a shock and a bit of a whirlwind of activity and emotions for me and my family.

The following Tuesday, Jan. 7th, I had my first nerve sheathe decompression performed on one eye. Up until this point, my vision was still 20/20, but I was still seeing double unless I closed one eye. The surgery was intended to drain excess spinal fluid directly off of my eye. By that Friday, the 10th, my vision had declined so much that the doctors decided to do the same procedure on the other eye. Within that week, I basically went from 20/20 vision to what I have now—20/800+, and lost a portion of my color perception as well.

On February 7th, I was admitted for surgery again to have a spinal shunt implanted that would hopefully help drain the fluid more and prevent this from happening again. I continued to see my doctor weekly for monitoring. My vision remained the same and never improved. I was in seventh grade at the time and had been out of school since the middle of December. Throughout the ordeal, I just kept thinking that things would get better and my eyes just needed to heal. I was ready to go back to school and back to my normal life.

Around the Middle of March, I remember going for a checkup with my neuropthamologist and asking her when things were going to get better or what they were going to do next; and when I’d be able to go back to school. I remember her saying that they had done all they could and that I could go back to school anytime. I remember asking her something like, “What do I do now?” To which she replied something along the lines of, “just go on living your life.”   I remember feeling a little confused and surprised by her response. How? I thought. What do I do now?” Again, I was now almost thirteen and this all still seemed so surreal to me. My doctor then suggested that we get in contact with the Utah State Division of Services for the Blind and see what kind of support and resources they could offer us. Up until that point, it hadn’t really hit me that I was going to be blind. I’d made jokes about it to some of my friends and family over the past few weeks that I was the “Blind Lady”, but this didn’t bother me because it wasn’t true. This was supposed to get better. I also remember then feeling a little let down because there was nothing left for the doctors to do, and just…sad. This wasn’t the outcome I had expected.

I continued to hold onto hope that my eyesight was going to improve. It just needed time.

About a year or two later, it started to hit me that things were probably not going to get any better with my vision. Around that same time a cousin of mine, in an attempt to be funny, told me about a documentary he had seen on nerves which basically explained how nerves don’t regenerate. So, because my blindness was caused by damage to my optic nerve, I was going to be blind permanently. While I didn’t appreciate his bluntness at the time, (and felt like punching him), I knew he was right—not because the documentary said so, but because I knew so. I remember putting on a brave face, but later coming home and crying at the realization that it might be time that I start accepting that this was how things were going to be for me. Shortly after that, I finally determined that no matter what, I would make the best of this experience and not let blindness hold me back.

I won’t sugar coat my experience and tell you that it hasn’t been hard. I’ve had my angry moments and cried more than my fair share of tears in frustration many times. Thankfully though, I was (and still am) blessed with a great support network of great family and friends. I think that, along with my faith in God is what really got me through the hard parts. I have also had some very special experiences which have helped to strengthen me and shown me that good could come from my circumstances.

For the next few years, I muddled through the rest of junior high and

High school with CCTV’s (large T.V. screen magnifiers for reading my textbooks), large print, getting classmates to read things to me in class, and books on cassette, yes, dating myself a bit. We also installed a large classroom size blackboard on the wall of our kitchen where I would nose-read and work out math problems for my mom to copy down on my notebook. My family drove me places, and walked routes around my schools with me so I could memorize them. I never learned braille or used a cane and pretty much didn’t consider myself blind. . I continued to participate in dozen of school and community clubs, and I graduated with honors from high school.

College was a bit more challenging only in the sense that I didn’t’ have my family to lean on, but I had good roommates and I figured out strategies to get by, or tricks like avoiding areas with lots of stairs by taking a longer way around to a building. Not the best approach, but I did what I had to do. I got notes from classmates, took tests with readers, and spent hours with math and stats tutors reading me problems and copying my work from a blackboard onto my assignments. I thought I was doing great because I was getting by, seemingly well too, but things could have been so much easier and better had I known then what I know now.

In retrospect, even though I was involved in a lot of things and had a lot of great opportunities growing up after losing my vision, I feel like I missed out in other ways. I didn’t realize how much I lacked in confidence or avoided certain activities because I didn’t know how I’d do them. I realize that it was easy to hide behind hours of homework and difficult honors classwork than to have to go and participate in something out of my comfort zone where I didn’t’ know how I’d get aroundor meet and recognize people.

Fast forward a couple more years. I graduated from college, and began a post bachelor’s degree program at a renowned children’s hospital to become a certified child life specialist. Two years later, I ended up failing my internship because of my blindness. During my internship, I found myself enrolling for a three month blindness skills training program at the Utah Division of Services for the Blind as a last stitch effort to salvage my internship, but this proved to be a waste of time as the program at that time really did nothing for my confidence or gave me real reliable skills training.

Failing my internship was like hitting rock bottom for me with respect to my blindness. I couldn’t fake getting by any more like I’d done for so many years, and frankly I was tired of doing so. After all of this, I found myself re-evaluating my life and next steps. I’d never failed anything, so that alone was a low blow. But, what really hurt was that I wasn’t allowed to sit for the certification exam because my proctors felt that I could not adequately perform the tasks of the job without full vision, and I couldn’t show them otherwise at that time, despite how well I had performed in other aspects of the program.

Also around this same time, I was really starting to question what the next chapter in my life would look like. I was an adult now. The general societal expectation now for me was to move out on my own, go on to graduate studies, or find a real job, and hopefully get married and start a family. Each of these things required some greater level of independence than I felt I had at that time. I wanted these things too but wondered how I would be able to accomplish them. Up until now, life had been relatively easy. I’d either lived at home, or been away at school. Even being a college student brought a certain level of stability and security. It seemed like whichever path I decided to pursue, or just adulthood in general, brought with in new blindness obstacles which I was unequipped to handle successfully.

Later that fall, through a series of unexpected events and continued involvement with an organization I’d encountered a couple of years earlier—the National Federation of the Blind –I was accepted to a Masters of Education program in Blindness Education at Louisiana Tech University. As part of the requirements for the program, I had to also enroll as a full-time student at the Louisiana Center for the Blind, the leading blindness rehabilitation program in the country. Even though I was reluctant to participate in the training program (graduates refer to it as “boot camp for the blind”), deep down, a part of me knew this was something I needed to do. I’m so grateful that I did. My experience there truly changed my life. I could write volumes about how this experience and skills training gave me a new perspective and confidence that I didn’t know I’d been lacking. I learned how to navigate safely and independently under blindfold with the use of a long white cane. I traveled in airports, train, subway, and bus stations, and cities across the country including New Orleans during Mardi gras, and New York City under blindfold. I cut down a Christmas tree with a hatchet and learned how to operate power tools without vision which boosted my confidence and taught me that I could find adaptations to make any task in any future job doable.  I prepared a meal for 50 and cleaned up after it all while wearing a blind fold which helped show me that maintaining a home was possible. I took summer camp children to water parks and grocery stores under blindfold which gave me skills to care for my own children someday. My life was truly changed by these experiences and I am forever grateful.mj-lcb-training-ropes-corse-tenn-9-2004

(Caption: Mary Jo Thorpe, high ropes corse, Smokey Mtns. Tenn.Sept. 2004)

Looking back on the last twenty-five years of my life is a little bitter sweet. Sometimes I wish I could go back and tell myself what I know now so as to have spared myself some of the heartache. But I know I needed to go through those hard things to get to the place where I am now. UP until that point, I was getting by, and doing a pretty good job too, but by finally deciding to embrace or accept my blindness, I let go of an immense amount of anxiety and a facade I didn’t realize I was using. My life feels so much fuller and authentic as result. I’m so grateful for the experiences I’ve had and just hope in some small way my experiences can help make someone else’s experience, whatever it may be a little bit easier. Thanks for reading.

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