Archives - January, 2015



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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24 Jan 15

By Randy Pierce

Randy and Jose enthusiastically posing before the Superdome in New Orleans February 3, 2002

Randy and Jose enthusiastically posing before the Superdome in New Orleans February 3, 2002.

I have been a passionate supporter of both the New England Patriots and football in general, a sport which I’ve found to be tremendously entertaining for many years. I appreciate the pauses in play for socialization and strategizing as well as the drama of setting the personnel and formation for the physically intense moments involved in every play. Athletes of many abilities bring together brute strength, speed, agility, and intelligence with incredible athleticism and skill.

As a blind man, it lends very well to description and the weekly pace allows me to fully invest in the entertainment of it without unreasonable impact on the rest of my life goals. The Sports Emmy Award Nominated HBO Inside the NFL Fan Life documentary on me showcases that rather well.

As I should be excitedly preparing for the team’s competition in Superbowl 49, the talk has been of “Deflate-Gate” and general allegations of cheating. I take my integrity very seriously and that of those with whom I associate, as well as the integrity of a team/sport which I support as a season ticket holder and very passionate fan. After years of below mediocrity, the team’s rise to prominence was matched with my own fortunate naming as the Fan of the Year for their first Superbowl Season and the NFL award as the Ultimate Patriot Fan that same year.

Such success has brought some level of doubt, suspicion, and mistrust at times for the Patriots. I can relate, as I’ve had my blindness called into question after some successful endeavors and it is frustrating to me that for some it is easier to justify our own perceptions of failure by finding fault with any who succeed. That isn’t entirely the case in all things, to be clear, but it is a too often disappointing phenomenon. The Patriots brought this upon themselves when “Spygate” in 2007 showed they had violated a rule, albeit one of questionable impact. They were punished severely, and from that day forth earned to some extent the accusations and allegations which would falsely follow them for every success.

This has had a not inconsiderable impact upon my enjoyment which is at the heart of any entertainment source. Once again this year that has emerged as a theme, and while the results are not finalized at the time of this writing I have significant reasons to be hopeful my comfort with the team may remain.

What I do know is that I do not blindly  or mindlessly follow the team and sport. Ray Rice and Ray Lewis abominations matter to me. Player safety and the league’s continued lip service to real change matters to me. Integrity matters to me and the escalating costs of corporate-level financing replacing fan support matters to me. I love to join my many friends in shared excitement during a Sunday afternoon contest. I respect the players’ hard work, skill, determination and teamwork to bring victories or occasionally defeat.

I hope that can continue because that is the root of what I chose to pursue as a fan. When the mismanagement of the league or team shifts too far I must shift with it for my comfort and I will make the right choices for me in such things. I hope and want to believe better management and a better approach is just ahead to keep this entertainment a valued part of my life. While I respect the choices and opinions of those who feel differently, I hope they do so with a reasonable amount of thought, facts, and consideration for the process with which they communicate their concerns and frustrations. It is ultimately in this communication where too many things go needlessly awry.

Go Pats!
Randy
FOTY 2001

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17 Jan 15

By Randy Pierce

One of the most rewarding and impactful aspects of 2020 Vision Quest is our School Educational Program. On Tuesday, January 13, I had the pleasure of visiting the John F. Ryan and the Louse Davy Trahan Elementary Schools in Tewksbury, MA.  As I listened to the school announcements prior to our presentation at the Ryan School, I heard their PA announce, “Believe in PAWSibility – Woof” and knew our message was already resonating with these fifth and sixth grade students.

I was happy to share many messages with them including my own more backward A-B-C approach: “Conceive – Believe – Achieve.” Their insightful questions allowed us to cover many topics, with teamwork resonating perhaps strongest of all.

My afternoon in Tewksbury brought me to the Trahan school where a teacher’s request enabled us to showcase an Autumn-style language lesson. They wanted me to walk around the cafeteria in which we were presenting such that all of the students could get a quality look at how Harness Guide work is accomplished. This was a simple request, but in order to have Autumn walk in a loop around the entire room I needed to give Autumn a target destination. The only thing which stood out visually to the teacher was a window and I’d never taught Autumn the word window. She knows door, stair, elevator, car, left, right and many other words, but not window. So for these third and fourth graders, it was time to teach her.

This is done with a powerful teaching tool given to us by the Guiding Eyes for the Blind trainers. When I make my hand into a fist and say the word “Touch” she is trained to enthusiastically push her muzzle to my hand quickly. My job is to give her an immediate “Yes!” exaltation and follow it with a treat. By repeating this with my hand against an object I want her to learn, she begins to associate that object with what comes next.

In this case, “Touch window” was repeated with the muzzle nuzzle and reward. After a few times, the first remained but the word touch was removed such that window was now the direct association with the object. Presto! Suddenly Autumn had learned a new word, and when I said “Find the window,” she navigated me directly to it. When I said “Find my chair,” she returned me to the place from which we began. It was a wonderful lesson on my girl’s ever growing vocabulary and let the students see her enthusiasm for learning – something she has in common with many students at our school presentations.

We are proud to have presented to over 36,000 students since founding 2020 Vision Quest in 2010 and count on reaching many more! If you would like to learn more about our education program, please visit our school education page and/or reach out to us at education@2020visionquest.org.

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10 Jan 15

By Randy Pierce

“Going blind is much harder than being blind.” 

Most of us learn to depend extensively upon our sight. When that begins to fail us to any amount, it can be mildly challenging to completely overwhelming. It is very common for denial to be amongst the earliest and strongest responses. It is both sad and frustrating to know this denial often inhibits the most helpful approaches to address these challenges offered by those with the benefit of experience and education which has likely solved these difficulties many times over.

I’m still amazed at how many people contact me because they or someone they care about are facing some level of vision loss and don’t know how to approach it. I’m delighted for the contact and chance to offer support and resources. But prior to going blind, I’d have never realized what a significant number of people are challenged with significant vision loss–it’s all too often an invisible malady. As such, I wanted to suggest a few thoughtful approaches for you or anyone you know who may be experiencing any amount of vision loss.

Please especially consider that the number one cause of blindness is “age-related macular degeneration” and it is very likely impacting people you know. Remember also that “blindness” is a term often feared as part of the denial because it is the extreme case of visual impairment. Help is beneficial and available for those encountering any amount of life impacting vision loss.

First and foremost, use the benefit of a knowledgeable and capable medical world to take the best care of you and your eyes. My ophthalmologist at Nashua Eye Associates made fantastic choices and in conjunction with my neural ophthalmologists likely helped me preserve my sight for 11 years after my medical condition struck. Do everything reasonable to protect your sight and at the same time explore all the opportunities for how best to utilize the sight you have remaining.

Every state has organizations similar to the NH Association for the Blind. Whether it’s the IRIS Network in Maine, the Mass Association for the Blind or many others, there are organizations who specialize in all aspects of “Low Vision Therapy” that offer tips, tricks, and tools for managing all aspects of your life. Having trouble threading a needle? There’s a tool for that! Trouble with colors – you bet there’s a tool for that. Simply wish to read and enjoy a book or paper as you did most of your life? The right lighted magnifier for your needs is probably available. The trained staff will help you determine the right fit for your situation and even help you with the training and use of those approaches.

So if you are in or near New Hampshire, I strongly encourage that first call to the New Hampshire Association for the Blind at 603-224-4039. A quick email or google search will undoubtedly help you find the right organization near you otherwise. They’ll have some immediate recommendations available and more extensive possibilities certain to ensure your possibilities are as limitless as your willingness to conceive, believe, and achieve!

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3 Jan 15

By Randy Pierce

Randy, Tracy, and Autumn wish you a happy year ahead from the Golden Gate Bridge.

Randy, Tracy, and Autumn wish you a happy year ahead from the Golden Gate Bridge.

AULD LANG SYNE (English Translation)

Should old acquaintance be forgot, and never brought to mind?
Should old acquaintance be forgot, and days of long ago?

CHORUS:
For days of long ago, my dear, for days of long ago,
we’ll take a cup of kindness yet, for days of long ago.

And surely you’ll buy your pint cup! and surely I’ll buy mine!
And we’ll take a cup o’ kindness yet, for days of long ago.

CHORUS

We two have run about the slopes, and picked the daisies fine;
But we’ve wandered many a weary foot, since days of long ago.

CHORUS

We two have paddled in the stream, from morning sun till dine;
But seas between us broad have roared since days of long ago.

CHORUS

And there’s a hand my trusty friend! And give me a hand o’ thine!
And we’ll take a right good-will draught, for days of long ago.

CHORUS

For me, the heart of the New Year is not in the resolutions but in the reflections and looking ahead. My years are so very full of meaning and the pace often just a bit too unrelenting for the full measure of both of those things which surges to me around January’s arrival. I’ll take a short tour of the 2020 Vision Quest year past and thoughts of 2015 ahead.

Last January’s tragic loss of the Mighty Quinn resonates still for the loss and for the legacy he left behind. Our first published work is written from his perspective in Pet Tales and has been very well received. Our #Miles4Quinn has encouraged many thousands of healthy miles and both Randy and Tracy completed their first marathons in his honor.

Autumn arrived to ease some of the pain and bring her own joy and talents into our world. Her boundless joy continues to uplift our spirits every day as our bond and teamwork continues to grow.

We continued to experience mountain climbing although running goals were a primary feature. From our pioneer work on a Tuff Mudder to a B1 National Marathon Championship, there were many accomplishments. The NH Magazine “It List”, a TEDx Talk, and the strengthening of our board and staff all highlight a year of many positive strides. I think, as always, that the 34,000 students we’ve reached with our presentations remains one of the strongest aspects of our year and mission.

The promise we seek in 2015 is to bring out our best efforts and hopefully encourage and inspire others to do similarly. Winter training is leading towards readiness for the Boston Marathon. Summer’s training is towards the trip to Tanzania and our goal to reach our highest peak at the top of the world’s tallest stand alone mountain: Kilimanjaro!

Along the way we hope to bring our total students to well above 50,000 and continue our corporate presentations which may enable us to support Guiding Eyes and the NH Association for the Blind in the best fashion they both deserve from us.

At the heart of everything we do is our hopeful intent to tend the people of our community. These wonderful friends old and new are the foundation of hope and happiness for all that will come in the future and the not so secret means to saver every present moment.

Happy New Year to you all!

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