31 Jan 15

By Randy Pierce

Well, aside from those who might ask why a blind man climbs mountains, runs marathons, skis and/or any of the many physical activities I often choose, I am also frequently asked for a better understanding of what is wrong with me medically. Most are aware that my neurological disorder goes beyond my blindness.

A part of the challenge is that I have never received a confirmed diagnosis although I have a speculative suggestion of Mitochondrial Disease which is a catch-all for many disorders most of which are still becoming better understood. Thus far all tests to determine which form might be impacting me have failed to provide answers. I remain an anomaly, but with considerable promise as the field develops and my DNA tests have been expanded.

Initially my optic nerves began to swell and “die” in an episodic fashion. Seven episodes from 1989 to 2000 resulted in  complete optic neuritis. Effectively, the wire between my functional eyes and my brain no longer works. In 2003,  another episode caused damage to my cerebellum, or the balance center, and resulted in me spending nearly two years in a wheelchair. Two separate experimental approaches which included six simple surgical procedures and thousands of hours of physical therapy led to me walking again.

Yet another episode in 2012 assaulted the peripheral nerves of my legs/feet and arms/hands. This reduction in sensation is the final confirmed aspect of this still undetermined condition. The combination of these challenges has created many difficulties but the motivation for me remains in how many problem-solving approaches have enabled me to keep striving for achievements which I find rewarding.

In the day-to-day approach to life there are a couple of additional side affects which are notable in how they can impact me – sometimes literally. I am more prone to hitting my head and have experienced more than my share of concussions as a result. If I’m not attentive and concentrating sufficiently, even the most simple task of bending down in the kitchen to pick something off the floor can result in hitting my head on the counter rather forcefully.

Complicating this is that a person with no light perception often experiences another condition called “non-24-hour sleep-wake disorder,” as the body clock struggles to allow normal sleeping without the adjustments of daylight. While there is a treatment with some success for me, a drug called Hetlioz, low sleep, the many bumps and bruises and perhaps part of my base condition result in a higher occurrence of migraines. These can range from totally disabling me to making anything I attempt very difficult with a reduction in focus, causing more risk to any activities I undertake.

This is rather a lot to take at times and without question I have times when I am frustrated by the results of any of these difficulties. Ultimately though I’ve long ago taken the approach of attempting everything reasonable to reduce my risk and promote my general well being. I accept the days which restrict me and try to find the balance between appropriately challenging myself and giving myself the rest needed to ensure I can return to striding forward sooner. The amount I am regularly able to manage athletically, personally, and professionally inspires me to understand that much success and many great things are still possible. With that lesson my general emotional well being rarely struggles too much and results in the generally positive approach for which I’m occasionally called to question. So while there is no overlapping message here nor, I hope, is this a complaint session on my part. I do hope for those who wanted just a little more insight into what’s wrong with me to have a better understanding.

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