“The Holman Prize is not meant to save the world or congratulate someone for leaving the house. This prize will spark unanticipated accomplishments in the blindness community. You will see blind people doing things that surprise and perhaps even confuse you. These new LightHouse prizes will change perceptions about what blind people are capable of doing.”
–Bryan Bashin, CEO at LightHouse
I chose a life of independence and freedom based upon believing in possibility, problem solving, and perseverance. While my blindness slowed me on occasion and helped me stumble on several occasions, I’ve been fortunate to be surrounded by friends and a community which rarely even attempted to hold me back and more commonly joined efforts with me to help us all reach for our peak potential. In this, I’m incredibly fortunate as well as in the resolve to not allow those other times to overly impact my confidence or determination.
Along the path, I learned how much work remains to be accomplished in the area of awareness to encourage the vast majority to welcome these reasonable approaches. It is why I’m excited to share the news and to ask all of you to help me share this news as well with the sighted and visually impaired communities as well!
The Holman Prize: $25,000.00 The Holman Prize for Blind Ambition is an annual award to finance blind adventurers in pursuing their most ambitious projects. In January, the contest begins with a challenge: blind applicants must submit a first-round pitch, in the form of a 90-second YouTube video.
I love several great aspects of this project. First, it emphasizes my sight-impaired peers to be creative in developing an adventurous goal emphasizing travel, communication, and connection towards the cause of demonstrating ability awareness. Second, it creates a stage for all of the world to see these goals and dreams as well as many of them hopefully coming to fruition. I’m so enthused by it that despite my many adventures I want to develop something beyond my prior scope to suggest in my own 90-second video.
So please, take a look at their message, their contest, and the results already underway! I’m proud of what I’ve accomplished and I’m just one person with the limitations of my own focus. It is a world full of talented people, some of whom might just need this push to reach for their own peak potential!
“Faith is taking the first step even when you don’t see the whole staircase.”
– Martin Luther King, Jr.
My friendships, like my running and my blindness, are a journey of small steps with ever increasing promise when I learn to take those steps with a little guidance. Admittedly the running career involves rather a lot of guidance and fortunately for me there’s been an abundance of kind opportunity.
Recently I sat down with Jennifer Jordan, Race Director for the Gate City Marathon, and Tom Cassetty, President of the Gate City Striders. Each of them has guided me for a run in the past. They each have become personal friends of mine and they were sharing some exciting and well timed news.
I had already decided to run the Gate City Marathon on Sunday morning May 21. I had already assembled a team of friends from the 2020 Vision Quest crew to run the relay for themselves while each guided me during their roughly five-mile loop. I had already determined the relay options created such a fun and festive celebration atmosphere in downtown Nashua that I hoped we’d encourage our community of friends to create other teams or just come join us for the block party atmosphere. This is all still true and I absolutely urge all of you to create any combination of teams for the relay, half or full marathon or simply come down and help us celebrate an epic event and experience. If I can help encourage that, please let me know because I’d love to support this event by having you join us in some capacity!
Randy: Jumping first to the big news, why have you decided to open a VI (Visually Impaired) Division?
Jennifer: Our race and our club has a mission of inclusion. We want runners of all abilities to feel included and participate. Randy Pierce is a very important club member and friend so what better way to celebrate that friendship than to add this division to our race!
Note from Randy: One of the things I appreciate about my club is the approach that every member is a valuable and important club member as evidenced by this response.
Randy: This is the third year of the Gate City Marathon. What was the inspiration for its origin?
Jennifer: This started as a replacement for the long-standing AppleFest Half Marathon, formerly the club’s signature event. This race was losing popularity and registrations so the club decided it needed a new signature event. A group of members, led by the club president, Tom Cassetty, discussed some options. Tom wanted a marathon course in a clover-leaf formation that would cross over Main St in Nashua as its center-point, allowing for the relay option in addition to the marathon distance.
Randy: My own experience downtown for your first event and the reports I’ve heard from others suggest you really captured that goal well. The downtown central location showcases Nashua’s downtown in a festive and fun block party atmosphere which I appreciated as a spectator and look forward to as a runner. My wife Tracy and her relay team certainly appreciated the central gathering point for excitement. Many people celebrate it as the best relay marathon because of the central loops from downtown Nashua. What do you think are the best features of your event?
Jennifer: We agree that one of the best features is the loop or clover-leaf formation. This allows a marathon runner to be re-charged after every 5-ish miles, making it a great spectator marathon. Additionally, it allows for runners who may not be ready for the 26.2 distance to also participate by putting a team of friends together. It’s also a celebration of downtown Nashua! In addition to these items, we have a unique high quality swag bag full of goodies from our sponsors, a great tech race shirt, custom finisher medals and a great after-party! We are also very excited to report that our half marathon has been selected as an event in the NH Grand Prix series and will be a certified half marathon distance. Of note, our Marathon is a USATF certified Boston Marathon Qualifier as well.
Randy: While I’ve a little bit of a bias as a proud member of your run club, I thought you might share with our community a little bit about who are these “Gate City Striders” who are putting on this event?
Jennifer: Who are the Gate City Striders?
We are the largest and longest established, non-profit running club in NH, with over 700 members that includes individuals and families. With a strong focus on running, competitively and recreationally, we also focus heavily on community outreach. We provide a free summer youth fitness program: Fitness University; and several events to benefit local charity organizations: NovemberFest race benefits the Nashua Children’s Home, Harvard Pilgrim 5k benefits the Nashua PAL XC program, we partner with and provide financial help to the Nashua YMCA, High Hopes of NH, Nashua Police Athletic League and many others.
Randy: How did you come to be the Race Director?
Jennifer: In short, I volunteered. A group of us was working on the concept for the race/event and I (with some trepidation) decided I really wanted to do it. I thought my professional experience as a Program Manager would really help me manage this large project. I think I have developed the skills to be able to lead a team and we had and have an exceptional team of folks on the committee. Like most things, a task such as this cannot be done well without a strong, knowledgeable team!
Randy: I might add caring and passionate team to that description and you certainly have all those qualifications. I was already enthusiastic about the race before we sat down to talk and now I’m even more thrilled and hopeful to help bring even more people to join us. The event is on May 21st at 7:00 am. How can people sign up or get information?
Randy: I feel like we’ve covered a lot of ground, though not quite a marathon. Is there anything else you would like to share with our community.
Jennifer: It should be noted that the Gate City Striders and the committee and volunteers who manage and support the Gate City Marathon, Half Marathon, and Relay are made up 100% of volunteers. An event this size requires hundreds of volunteers to make is a fun and safe event for all. Each year we are challenged to provide enough volunteer support. This year will be not different so we can always use more volunteers! But it cannot go without saying how much we appreciate the volunteers we do get and how much we appreciate how supportive the City of Nashua, the residents and businesses and houses of worship have been over these years. We hope to continue to build on those relationships!
Have you ever wondered how a blind person votes? In the past, it has been more challenged than most would prefer. It has generally resulted in me, my dog guide, a volunteer to record my vote and a witness all climbing into one of those small booths together. Often they were wonderfully patient, open-minded and non-judgmental people with whom I had the good fortune to share the details of my voting choices… but not always. There was also a former phone/fax system installed in the polling locations which failed at an alarming rate.
But new this year is the “One4All” voting system which showed considerable promise in the primaries and is now ready for its full debut in our November elections. Let me make it clear for all my NH community, visually impaired or not: this new accessible method of voting needs as many testers as possible. I am inviting all of you to take whatever voting choices you have and enact them on the same voting system I’ve been asked to use.
In a highly contentious time, I’m proud to suggest the opportunity for each of us to be guaranteed to vote together in a comfortable solidarity. This system needs to be tested by use. It needs feedback from those who can see where it struggles and those of us entirely trapped by the auditory aspects it provides.
It may take you an extra moment or two at the polls, but if nobody is in that line, perhaps you’d consider giving it a try and ensuring the staff gets a little extra opportunity to test their equipment and that proper feedback can be provided going forward. Tell them you have a friend who is blind and has struggled at times with polling equipment and locations, and has friends who have heard enough horror stories they are intimidated to even attempt it until they hear enough good stories.
Wouldn’t it be comforting to be confident you are part of at least one good story this election cycle?
We originally posted this a few years ago, but it’s still relevant. Happy Halloween!
The Scary Realities of Vision Loss
By Randy Pierce
Imagine reaching for the light switch in total darkness on an eerie Halloween evening. You flip the switch and nothing happens. You are surrounded by frightening noises as your hands find only unidentifiable objects. You’re trapped in a prison of manifested fear!
While there may be moments similar to this fright in the lives of someone newly blind, there is perhaps an even more powerful terror in the transitioning through vision loss towards blindness. Losing vision is challenging with the fear of the unknown and the anticipation of how much will become more difficult or seemingly impossible. Certainly any form of vision loss is going to present difficulty and each person’s experience will be different.
One fundamental part of our mission with 2020 Vision Quest is to demonstrate the possibilities of success despite vision loss, or, in my case, a transition to total blindness. This is not just intended for those dealing with the challenges directly, but also all those whose lives may be touched by these challenges despite living in a fully sighted life. So very much of a typical world is visual that it impacts many aspects of how we interact with the world and with each other. It can be tremendously isolating to have that common connection diminish in ways far too many people simply do not understand.
I do not for a moment pretend to have all the answers regarding life or vision loss. I still find many moments of significant frustration as I attempt to manage particularly difficult aspects of blindness and, not surprisingly, life. Just like anyone, there are challenges and they can at times seem to overwhelm any of us. As with any challenge, the right preparation, the right support, and a more educated world can vastly increase the chances of successful achievement through any adversity.
In thinking about the “Trick or Treat” of blindness, I acknowledge all the real and scary frustrations possible. I also welcome the incredibly powerful perspective it has brought to me as well. In losing my sight, I began to develop a more powerful vision for myself and my world. Paying attention to all the other aspects of our senses, environment, and interactions which are not visual can have a beneficial side. It’s forced me to “look” at the world differently, but has also inspired me to try to do so often in a variety of ways as I try to understand as much as possible outside the realm of the typical. While without question I do wish every day for the chance to have sight again, I know that I am glad for having lost my sight and the vision that blindness has helped bring to me.
Hopefully our charity efforts will provide education, inspiration and much more! I know that I’ve received a lot of both though the process thus far!
Despite all I’ve learned and achieved, there are still days I allow myself to be a prisoner of my blindness. Coming from the state of NH with the motto “Live Free or Die” brought the imagery to the right playfully to mind even as the feeling of being restricted in many aspects of life is very real for most of us at one time or another. It is easy to see how I might let blindness trap me because it does make some things more challenging and it provides a ready-made excuse which many are more than willing to embrace or, at times, even attempt to force upon me.
I’ve long understood and espoused the idea that problem solving is a key to escape such chains. Frequently, I share how positive the experiences of prior problem-solvers can be for this–in my case, the knowledge and training of the New Hampshire Association for the Blind for my sight-related challenges.
What about the more perilous prison of drifting unaware into prisons crafted by ourselves or others? This could be as distracting as the excuses we embrace or the unhelpful habits which creep upon us. How many of us chain ourselves to Facebook, computers, or cell phones? There’s a fine line between having a tool we use to enrich our life and having a tool which uses us to trap us unwittingly.
The key here is learning to take opportunities to open our eyes and minds into a more broad awareness of our lives. It’s taking the time for mindful introspection on a regular basis and realizing where we might not be satisfied with choices which have become habit. It’s making the choice to stop the behaviors which trap us. It isn’t easy and sometimes it’s easier to supplant it with something healthier until a new and better habit is formed in place of the prior.
Ultimately, the key is that regular exploration of awareness to keep taking control of our lives and making the adjustments which let us out of our prisons.
Despite all these thoughts I still find myself behind the bars of my canes, at least metaphorically, on occasion. Expecting perfection is probably setting rather unrealistic expectations. I’ll strive for it and be as gently forgiving when I slip even as I start looking for my keys to make it better right away. I think as part of that reflection I’ll keep the first half of my state motto as the primary goal and wish that for all of you as well: “Live Free!”
Several hundred people descended upon the McGreal Sight Center for the NH Association for the Blind’s 13th annual Walk for Sight on Saturday, June 5, 2016. 2020 Vision Quest was represented by a team of 20 walkers who raised over our goal of $2,020 for the event.
One highlight this year was NHAB’s “Walk in My Shoes” program. Several fully sighted walkers chose to work with a Mobility Trainer from the Association to experience what it is like to travel with sight impairment. A little instruction and the use of sight simulators for glaucoma, macular degeneration, and several other common sight disorders, including a blindfold for the fully blind experience, enabled these walkers to truly understand some of the challenges faced by those served regularly by NHAB.
Since our team had a collection of children on the team, they wanted to experience a form of this and with their parents helped it to take place. I was able to walk amidst them with Autumn guiding me. Listening to their excitement and observations made me appreciate the enthusiasm of youth as well as their candor. Our version only involved closing their eyes so we didn’t get the sight restriction from them, but I did hear from several that trying to use limited sight was almost more strain in concentration.
For us the first and most common concept for them to experience was the trust in their sighted guide. It wasn’t reasonable to have them train for cane or dog but sighted guide is a common method for a sighted person to help with simple guidelines (no pun intended) to lead them along our city route amongst the crowd of fellow walkers. All seemed to become very aware of the ground on which they walked which they formerly took for granted. Each crack in the sidewalk, curb, sewer grate and even patch of sand became a little more noticeable for the potential hazard it represented.
While I expect at 6’4″ of height I may need to duck at times, it was surprising how many shrubs had our shorter team members ducking – even Tracy at her towering 4’11” (and ¾”!!).
A final observation which I find quite true but was surprised to have noted by one of our youths was how much their awareness shrank to a smaller group than they were used to. Eyes allow you to understand what’s happening at a distance and in the noisy environment the world reduced to just a couple of close-by people and the concentration to manage the terrain.
The day was beautiful with many laughs as we relaxed together to celebrate helping a good cause while spending time together. I hope that next year we again assemble an even larger team to either experience a little walk in my shoes or help us support both our charity, 2020 Vision Quest, and the New Hampshire Association for the Blind! Thank you again to all those who joined us, all our many donators and especially to those who delved a little deeper this year!
“The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live the present moment wisely and earnestly.”
I’m home from my six-day stay at the Massachusetts General Hospital and feeling well despite an assortment of apprehensions. While I did provide some social media updates, I wanted to share the real struggle and ultimate result with the 2020 Vision Quest Community. I will try to answer any and all questions and wish to ensure you all know that overall I am well at this point.
I have a long term undiagnosed neurological disorder which may be a mitochondrial disease or something entirely unknown to the present medical community. My first awareness of this condition began in 1989 when I was plunged into legal blindness through the death of my optic nerves. Over many years there have been an assortment of episodes which brought the total death of my optic nerves and complete blindness as a result, a vestibular assault which had me in a wheelchair for nearly two years and what is now termed severe peripheral neuropathy in my feet and hands. These challenge me in various ways, though I’ve overall found compensation methods which allow me to continue a healthy and meaningful life.
On Sunday, February 20, I was running along the Charles river with Rob Webber when I paused, felt an awkward fading of my consciousness, dropped to a knee and with a warning to Rob proceeded to lose consciousness. I was out for roughly one minute before waking to assure him there was no pain. My pulse was steady and strong and my breathing easy. I did black out again for another minute or so and as I came to it was touching to realize how many people in the area were eager to help in an abundance of ways. As we were just about 1 mile from Mass General Hospital, it was an easy choice to visit them.
I had several more episodes of reduced consciousness. I underwent a battery of tests which first confirmed my cardiac health was excellent as that would be a leading concern in any consciousness loss. I was admitted for what would ultimately be six days of intensive testing. Geneticists (due to my past explorations), neurologists, and many other specialists swarmed me with every reasonable test to help them try and understand what was happening. Ultimately they formed a team of incredible experts who will begin a longer term search into my mysterious condition.
For the present they determined a deep brain seizure was likely causing these episodes. I’ve been placed upon Keppra, a seizure suppressant, and have had only one episode since the medication began. For the present we are treating me with the precautions of someone newly diagnosed with epilepsy such that I make choices which do not put me at risk of serious harm should another episode occur.
Despite having had a 10-20 second warning before each loss of consciousness, I’ll be exceedingly careful to ensure I won’t jeopardize myself or Autumn should this occur. This means no unsafe heights, drowning risks or even busy roads alone. I am fully cleared and encouraged to resume my presentations, workouts, and even training for and running the Boston Marathon.
There is continued follow up testing and exploration already in process. I have clear instructions on what to do when episodes occur. I’m comfortable entirely with the response of the great team at Mass General. That said, it is always emotionally frustrating to be reminded of the reasonable frailty which my condition helps to place upon me.
It is a bit intimidating to be confronted with the legitimate limitations and possible complications ahead in my life. I choose to not live my life in fear and struggle to sustain a healthy outlook as much as possible. They are not all strong moments and it is reasonable for me to have a difficult time with all of this. I will continue to put my best effort into all aspects of my life, including the medical investigations.
My reward for this effort are the generally positive results of my work with 2020 Vision Quest, NHAB, Lions and life in general such as the encouraging words shared by many along the way. All any of us can do is make our best attempts at responding as we feel is appropriate and with your help I will continue to do that as I strive for new heights… just not the fall-risking versions at the present moment!
2015 was a landmark year for Broadway. It boasted a handful of new hits as well as long-running classics. One of the aspects of last year on Broadway was the diversity of characters represented, from the 2015 Tony Award-winning Fun Home that was the first musical to star a lesbian main character to Hamilton that cast the founding fathers as people of color. Along with these new musicals there was also a revolutionary revival of Spring Awakening.
The original production of Spring Awakening opened in December 2006 starring Lea Michele, of Glee fame, and Jonathan Groff, who you can hear as the voice of Kristoff in Disney’s Frozen. At the time the production was a bold new musical that explored teenage sexuality and life at the turn of the century (the musical was based on a play by the same name). Given the setting the characters spoke formally but when it came to the songs they employed contemporary musical styles and language. The show was successful and gathered a strong following of young people before it closed in January 2009.
It is unusual for a musical to be revived on Broadway less than 10 years after the original production closed but the 2015 production added a new, revolutionary element. It was going to star hearing, deaf, and hard of hearing actors alike and be accessible to both hearing and deaf audiences. As opening night of the revival approached many wondered how it was possible for a musical to star deaf actors. Many people I know thought that there was not going to be any singing, just signing. Others were unsure how many of the actors were actually going to be deaf or if it was simply going to be hearing people signing and singing. Yet director Michael Arden pulled it off beautifully.
About half of the cast was deaf and half was hearing. Of the three main characters two were deaf and one was hearing. All of the actors signed the majority of the show. The moments when they were not allowed to sign—for example, in a classroom scene where they were told off for signing instead of speaking—the words were projected onto a screen that was incorporated into the set. The characters who were portrayed by deaf actors were given another actor to sing for them. This allowed for the musical to employ deaf actors without the show being silent for the hearing audience members. It worked seamlessly and even at points added an extra depth to the characters as the actors and singers interacted. Also having deaf and hard of hearing characters play characters who are misunderstood and not listened to by the adults of the show was a powerful thing.
In addition to employing more deaf and hard of hearing actors than any other musical currently running, the show also had the first person in a wheelchair on Broadway. Well, I should clarify while there have been actors who have been in wheelchairs as part of their characters, but none of them needed the wheelchair. Ali Stroker uses a wheelchair on and off stage and was cast as a character who was not written as needing to have a wheelchair but she was the best actress for the role so she got it no matter her mobility.
This revival of Spring Awakening proved that anyone who works hard enough has a right to be on a Broadway stage. The original production did not include deaf and hard of hearing actors or anyone in a wheelchair, yet this new production musical still had the same power, if not more, with an inclusive and diverse cast. Hopefully 2015 was the beginning of a trend of diversifying Broadway.
If you would like to see what the production looked like, here is a link to one of their rehearsals (warning: mature language):
For more information about Deaf West (the theatre company that put on this production) head to www.deafwest.org
I’m thrilled to share my second TEDx talk with all of you! My first talk was centered on the notion of how all of us can and should reach for our peak potential. This second talk was asked to fit to the theme of a “Brand New Day” and put focus upon a valuable perspective on Transition Trauma and Social Risk Management.
You may recall that back in October I shared how I develop a presentation as I prepared to give the talk and now you can directly see the results below. I also include that blog link here so you can perhaps gain insight into the process and compare the two different talks.
If you, as I do, believe there is value in these talks, please consider sharing them with all those who might similarly benefit. Thank you again for the tremendous support which helps inspire me to be reaching for new heights!
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.
Bad Behavior has blocked 108 access attempts in the last 7 days.