Living with Optic Nerve Damage

My story

In 2013, I was 6 weeks away from finishing my Bachelor of Education program in University and had a full-time teaching job lined up for the following September. Life seemed pretty good, but it all suddenly fell apart when I became critically ill. 

I spent 10 of the next 12 months in Hamilton General Hospital, fighting infection after infection. It got so bad that I ended up in the ICU several times because of my inability to breath and the seizures that ravaged my body when the infection spread to my brain. The only choice they had was to intubate and put me into an induced coma.

I thought 2013 could not get any worse, but I was wrong. Early in 2014, the doctors discovered I had serious ventricular swelling in my brain requiring immediate surgery. The swelling caused prolonged pressure on my optic nerve resulting in permanent damage to my eye sight. Initially I was considered legally blind, however, I’ve had some improvement in the last few years. Even with that improvement I can no longer clearly see people standing more than 5 feet from me, and cannot read standard size text in a book or magazine.

 I am an academic person who used to do a lot of reading and research, but because of my low vision I can no longer read physical books. I would like to replace my physical library with an electronic (e-book) library. My eyes have improved enough that I can read from my Kindle app when the brightness setting is set just so and the font is set to the largest it can be. This format would allow me to bookmark, and write notes for later, so I can use these books for academic study.

I also lost my driver's license which devastated me as it was a further loss of independence and ability to go places. My wife and I also used to go biking or walking together a lot. With limited vision, it is now unsafe to ride a bike, or even go on our usual walks in my wheelchair without guidance because I’m unable to see obstacles in my way. I’ve found a product called RideBySide (http://www.ridebyside.com/) which would allow us to go bike riding together again in a safe way, as well as a device called a FreeWheel (https://www.epicalsolutions.com/product-category/mobility/ ) which would make it much easier for me to get around in my wheelchair.

I currently have some assistive devices that help me see. In my picture, you can see a pair of white, funny looking glasses I use to help me see things that are 3-6' from me. I also have a monocular in the carrying case around my neck, (which is like a binocular, but for one eye only) that helps me see things 10+ feet away. Although these devices are helpful they are really limited in what they can do to help my situation and therefore I am looking at trying to fill those holes.

 My Goal

I am hoping to raise funds in order to buy items needed to improve my independence, productivity, and ability to enjoy life to the fullest despite my vision loss. I want to be able to engage in the environment around me and become an active member of society again. I hope to do that with your help.

Donations

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  • John Meerveld 
    • $50 
    • 22 mos
  • Anonymous 
    • $75 
    • 43 mos
  • Anonymous 
    • $150 
    • 43 mos
  • Monica Oosterhoff  
    • $50 
    • 43 mos
  • Monica Oosterhoff  
    • $50 
    • 43 mos
See all

Organizer

Dave Van Es 
Organizer
Hamilton, ON
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