I had a whole other post ready to be put up today, but today was an interesting day and I felt inspired to write about something different. I have always found the train system in Boston to be fascinating. It is not fascinating because it can just about get me anywhere in the city, but because of the environment, the culture and the experiences I have been a part of over the last 3 years.
What I will say, is that I feel 95% of the people on the train are in their own little world. People do not really talk to one another (if they don’t already know the other person), rarely make observation or offer to those who may benefit more from a seat and when people do talk, you never know what you are going to over hear. I have heard political debates, people discuss sexual encounters and a few other scandalous things. It is either silent, or entertaining. Continue reading
You never really know what direction this blog is going in. Well, here’s a hell of a turn off the beaten path. Let’s make this clear: I am sharing my observations and thoughts, not my experiences. If you’re someone who thinks this may be “inappropriate”, I say close this page. If you’re hesitant about reading on, be good to yourself and reflect on this…
-Anyone with a disability has thought about this. Perhaps specifically about sex, or about intimacy in general. I would think any person with any disability of any age has thought about this.
-If you’re a parent or family member of one with a disability, you have probably been curious as well. Will my child/family member have a challenge in experiencing intimacy? Yes and no. Challenges are what we make of them. By “we”, I mean those with disabilities as well as those without disabilities. Continue reading
I had a blast talking to a small group of high schoolers who were at Perkins this summer for a brief special program. There were 6 or 7 students and we had an amazing conversation. Well, I am apparently having another conversation with a group of high schoolers, but the audience will be many times greater than that at Perkins; approximately 100 to 150. Oh me, oh my.
My friends’ partner works as a high school teacher in the Boston area and she is assisting with the coordination of the National High School Journalism Convention that will be taking place in November of this year. This convention is sponsored by the National Schoolastic Press Association and from what I have read, approximately 4,000 delegates will be attending this week-long event. There are many different components to this convention, some of which are featured keynotes, workshops regarding year books, school newspapers and broadcasting as well as writing competitions. There will be several writing competitions and one is regarding sports. I have been asked to come and give a 20 minute speech followed by 15 minutes of Q/A with the students in the room. After the Q/A, the students are given a finite amount of time and are asked to write a piece regarding my story and what came to light through the Q/A with the audience. Continue reading
I find it to be interesting, in my experience, how the feeling of being at the bottom of the barrel can provide an opportunity to climb back to the top. Recently, I have experienced this on a few levels, one of which is on an active level. Grieving is a beast that takes shape in many forms and I never know how it is going to develop, go into hiding or blow up by the next day. As of late, it has blown up. Recognizing this is healthy and so is the experience. Ups and downs of grieving are to be expected. Well, that’s my opinion.
These down times can really hit me in many different ways. Over the last month I have felt a real decline in having the emotional energy and drive to work out and train for the marathon in December. Unfortunately, I have had to step back from this event as I simply do not have enough time to properly train with out risking a serious injury. Only having 2 months to climb from 4 mile runs to a 22 mile training run is not safe. As I have always said, I must honor my limits. Continue reading
Shortly after I was diagnosed with Choroideremia (at age 14), my parents began reaching out to the state to identify what services and resources may be available for me to utilize. I was also diagnosed as being legally blind, which meant I had vision that was 20/200 or worse. This status allowed for me to qualify for state services, as well as federal. In the months following my diagnosis, I was connected with Vocational Rehabilitation for the blind and was assigned to a wonderful case manager named Scot.
Scot then connected my family and I with another gentleman who worked as an O.M. Instructor, otherwise known as an orientation and mobility instructor. These folks work with those who have mobility impairments to learn how mobility devices are used. They also offer guidance in navigating various environments which present their own unique challenges. From what I can recall, I hated this. I hated it with all of my heart and was silent. Those first few months and that first year were extremely challenging. To be honest, I think I have suppressed much of my memory from those days. However, I can certainly recall some of my first uses and impressions of having a cane. Continue reading
Recently, I started reading a book titled Pride against prejudice: Transforming attitudes to disability, by Jenny Morris (1991 original publication). Jenny is out of the UK and became partialy paralyzed when she was 33. She was tending to work at her home when she heard and saw a very young child standing at the edge of a cliff that was 20 feet above a railway. Jenny went to rescue the child, but she encountered her own troubles and fell off of the cliff; immediately breaking her back and becoming paralyzed from the waist down.
This experience obviously impacted Jenny in many ways. Fortunately, one of them turned into becoming very active in fighting disablism and educating the world on this complex topic, as all topics of oppression, culture and history related to identity are. The book that I am currently reading strongly incorporates the feminist perspective and a lens for viewing disability in general, but also in specific for women. However, the feminist perspective and movement is not just for women. I strongly believe it is a philosophy, a study, a lens and way of life which can and does bring the world under a critical scope that betters the lives of all. Not just women. So for my “brothers” out there, take a chill pill and check this stuff out, for what it really is. Not just what you see on TV or hear in the locker room. Continue reading
Today, the Boston Athletics Association has opened a registration window for those who made it past the half marathon point on the day of the 2013 marathon but did not make it past the finish line. Approximately 5,300 runners acount for this cohort. I am one of them. We must still pay for the registration process, but do not have to raise a minimum amount for a charrity to register, as many of us had achieved that for the 2013 marathon. I think this opportunity is the best that the BAA could have offered and I am extremely thankful.
I was recently featured in an article hosted on
My recent trip to Perkins School for the Blind was incredible. It was nothing less than a beautiful honor to be invited to come and talk with visually impaired youth who are thinking about the future; graduating high school, the possibility for college, achieving independence and as I view it, claiming the life they desire and deserve. Obviously, this journey is filled with challenges and I did not shy from this. As I told them, it is not all puppies and rainbows. You will have very difficult and challenging days, but you must push on if you want what you are after. We had a wonderful conversation and had many things in common with one another. One of the young women in this group had told me that I was inspiring. I heard her shout this when they left the room and I felt many things towards this. The most important was the strong feeling that I must do more.
If you are a visually impaired athlete, and especially a runner, you have probably heard of a wonderful man named Richard Hunter. Richard is a VI endurance athlete and is one of the first people I found when researching how to run in a marathon when you can not see bo-didly. He is kind of a rock star in this community and many folks know of him and thanks to the wonders of the interwebs, are in communication with him, just as I. Richard actually heard about my running in the 2012 Boston Marathon and reached out to me last year. We have been in touch ever since then and I follow his journey, as he also seems to find the time to follow mine.
A video of Richard:
Richard is a resident of the lovely Sacramento area of California, where he lives with his wife and daughters. The California International Marathon (CIM) is held in that area and Richard has done so much incredible work to make this marathon inclusive and supportive of VI runners. He even does fund raising and provides distant VI runners with resources for making the trip. I believe that the CIM had 37 runners in 2012. This year, the run is on December 8th and he convinced me to make the trek to make my claim in the 2013 CIM.
As for my guide, his name is Josh. Yes, we will be team Josh. Josh Warren works for the Mass Association for the Blind (MAB) and does quite a bit of important work, some of which revolves around developing and supporting VI runners. MAB sponsors Team With A Vision, a team of runners for the Boston Marathon team. He’s a swell guy and I am confident he and I will make a great dynamic duo… He does have an incredible name.
However, I am not too sure that Richard will be running out on the course with us. Like a mad man, he has been training for a triathlon, or possibly an Ironman competition. This involves running, swimming and bicycling (count me out). Two weeks ago, he was riding a tandom bicycle with his guide and they were hit by a car going about 20 MPH. They were wearing their helmets, but Richard went through the windshield and sustained some serious injuries. He recently updated his facebook and informed us that he has a fractured disc (C7), a very long and deep cut up by his scapula that goes down to the bone, cuts so wide on his back that they can not be stiched together and various other injuries. He is back home and is resting up and is managing the pain as best he can. Towards the end of his update, he mentioned that this is adversity and it aint nothing new. Just like before, he’ll push on and will navigate this as best he can.
My heart goes out to Richard, as I know this aspect of our lives, truly becoming and being athletes, means the world. It strengthens us physically and mentally… The reward of each drop of sweat we shed is priceless. This type of obstacle is very difficult for me to imagine have happen to myself and I can barely phathom what Richard is going through. What I can state, though, is that on December 8th at the CIM, I’ll be running for Richard.
All I can continue to do is what Richard has been doing and the rest of our community and the many, many others outside of it that he has reached and has inspired me to reach. None of his work and dedication before or during this challenge will be in vain. This drives me to only become stronger and greater, just like Richard is, and it will happen. I have increased all of my efforts and am training harder than ever before. After a long work out at the gym yesterday, I carried out 4 sets of 100 rope slams followed by 1 final set of 50 rope slams. Pretend you have a rope large and strong enough to tie up an elephant that is looped around a stationary weight. Your task is to simply lift and slam the rope down with great strength. Well, try doing that 450 times. The most I had done before were 3 sets of 50 slams. Richard, I kept you in my mind and pushed on this time around, brother.
So on December 8th, let’s run for Richard.
A dear friend of mine, Doug, who was also one of my guides for the 2012 Boston Marathon and graced the pages of the Boston Globe with me, works at Perkins School for the Blind. For those of you who do not know, Perkins is a k-12 private school which provides an incredible education designed for children who are visually impaired. Students also live on campus and have the opportunity to participate in special summer programs. Many of these summer programs are also open to students who are not enrolled full time at the school. This summer, Doug had suggested that I come as a guest speaker to a group of high school students who are on campus for the summer, participating in a special program. I will be heading over to the campus this Wednesday to talk to 6 young people about my educational attainment, finding work and engage them in a mutual conversation about what opportunities are in their future and what we can do to make those opportunities happen.
I must admit, this is a pretty great honor and I am incredibly thankful for the opportunity to connect with a group of high schoolers who are probably processing some of the same dreams and worries as I was at that age. Heck, I am still processing some of those same dreams and worries.
We will have around an hour to chat. I have thought very, very hard about what I will say. I’ve considered coming up with a “top 3 principles for success”, or some cheesey thing along those lines. I finally relaxed and realized that this is all about finding out the experiences, possible needs and goals of these kids. All I can really share is that I have set goals and I have come across quite a few obstacles. Some of these obstacles I could predict and some came out of left field at 100 miles a second with no warning. I’ve been knocked down and I have been helped back up. I have been knocked down and I have clawed my way back onto my knees. What I have accomplished has required being honest with myself. Staying in New Hampshire, where I grew up, would have been easy. However, I knew what my dreams were and I knew that I had to go to the city for them to come true. I knew I had to throw myself into a city, alone, to find my dreams and find my own way.
At age 24, and as a blind man, to some extent, I stripped myself of the supports that had seen me through my undergraduate experience. Some were still there for me, and some were not. I saw this new chapter of my life as the ultimate test. To take on graduate school, learn how to live in a city, to build a new network of friends and loved ones and to greatly build upon what had previously been built.
I did not know where the train stops were, I did not know how to operate the washer and dryer in the basement of my first apartment, I was not too sure of how to get groceries and I was not too sure of how to make myself happy. I was not too sure of how to make myself feel safe. You know, in the movie BIG with Tom Hanks, shortly after he turns into an adult, that scene where he spends a night in a hotel alone? He hears screams and a gun shot out on the street, and then he takes to the bed and cries. He is a grown man, yet inside, and especially in that moment, he is a child. Everything is new, everything is unknown and everything is a little frightening and in that place, he was alone. That is how I first felt when I moved to Boston. Like I said in my last post, though, I made it.
I hope to find out what these kids are up to and what some of their goals may be. Their goals and dreams do not need to be like mine and I do not want them to be, I just want them to have dreams. I’m sure as hell going to tell them that they can achieve them. It may not be easy, but it is all doable.
Speaking of achieving goals, a reader of my blog, who happens to be one of the sisters from Montana, is raising funds for several of her cousins who have a condition that is degenerative and causes gradual loss of mobility. I will be making a donation to Cindy and would love it if folks would consider doing the same!