Sex… yup

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.

In my opinion, culture can view one with a disability as being nonsexual.  Stereotypes always seem to make their way to the forefront of our thoughts and dominate our notions of others.  These stereotypes may include the assumption that anyone in a wheelchair can not feel a thing from the waist or neck down.  In that case, this may lead others to assume that those in wheelchairs do not have interest in sex or intimacy, because they must not be able to feel a thing.  That is not so true.  Many folks in wheelchairs can feel and even get out of their chairs every day.  Indeed, there are some people who have extremely limited mobility and perhaps physical sensation, but this does not mean that sexuality in the mind is vacant.  Intimacy is a need we all have in various forms.  For folks with disabilities, it may just be expressed and explored differently than what you view in the limited mainstream media.  The needs for intimacy are the same, but the means by which we all achieve this will vary.

For me, I think there are some myths about intimacy and how the visually impaired explore and express this part of their desire and affection.  For example, touching a person’s face.  I do not do this with a whole lot of people.  Really, that is for intimate purposes, I do not express that with new friends.  For me, that is a romantic thing to do.  For me, that takes a lot of trust, it’s a very sensitive and delicate moment to share between two people.  Also, do not ever assume that a visually impaired person wants to feel your face.  I once met a woman and upon shaking hands, she took my hand and placed it on her cheek.  She did not know what the hell she was doing and the words she spoke at that moment did not make any sense.  She looked like an idiot.  I believe my response was “I’m all set”.  Yeah, don’t ever do that.

I also wonder if some people with disabilities may even experience being perceived in an exotic manner.  Back in college, a very close friend of mine told me about a dinner conversation she had with some of our other friends.  Some how, I came up and so did sex.   A friend of mine who shall go un-named said that I must “be good because I am all tactile”.  I found this to be quite funny, because there is really no basis for that statement.  Apparently, being able to slice and dice food with no vision nor cutting myself must mean I am amazing in bed or being able to touch type must mean I am one incredible lover.  Interesting.  I am sure there is a plot for a terrible adult movie in this blog somewhere.

I wonder if the perception of people with disabilities and sexual behavior is derived from culture and movements like I mentioned in “The Nazis weren’t the only ones”.  We had people stating that those with disabilities should not reproduce.  So not only can or has culture taught society that having a disability is less than those with no disability, but that those with a disability should not be seen as having reproductive rights nor quality of contribution to society.  Bottom line, we are not sexual beings.  So when those with no disability are attracted to one with a disability, there is conflict with emotions and messages, which is sad.  When the opposite is felt, one with a disability may feel intimidated or doubtful of reciprical feelings.  That’s just my perspective, though.

In short, just because someone has a disability does not mean that they can not connect on a very physically intimate level.  Some folks with disabilities may do things a little “differently”, but don’t we all?

Below is a link to a really interesting documentary about young people with disabilities doing outreach and panel discussions on sexuality in conjunction with having a disability.  I think most of this is spot on with how I also feel.  It’s also hilarious:

Sexabled: Disability unsensored

http://www.youtube.com/watch?v=EqlURsGgdsM


Farts, my pink tie and 150 high schoolers… yikes!

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.

This is kind of a big deal.  I mean, every opportunity I have been given over the last few years has been a very big deal, but there is something very special about these live interactions; the Real Abilities Film Festival, the broadcast with the Mass Commission for the Blind, the event at Perkins and now this convention in November.  The exchange of thoughts, stories and experiences between people is priceless.  Additionally, maximizing these opportunities for myself and others is extremely important to me and is only managed with preparation.

This convention will be held at the Hynes Convention Center, which is right next to where I work.  It’s a big, fancy place.  I think I will wear my pink tie.  If I end up being a fool, at least I’ll look snazzy.

This will be interesting, as every other engagement has been a conversation.  I need to prepare a 20 minute speach.  I am being asked to tell these young people something, not discuss something with them.  This is a very moving gesture and is humbling.  I have always found a thrill in improvising with both music and public speaking.  However, this will be different.  This will take practice.  The last thing I want to do is go up to the microphone, wing a 20 minute speach and end every other statement with “yeah, so….”.  I really, really hate that.

I really am not sure of what I will exactly say yet.  What I do know, is that I will make a fart noise with my mouth to somehow get a point across.  I always do that.  That’ll give them something to write about.


Metal, Moms and My Muscles

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.

Not only has my running been impacted, but so has my strength conditioning.  I have felt my work outs shorten session by session, the number of sets and reps slightly go down as well as the amount of weight used in some of these exercises.  Typically, I would push thorugh these runs and work outs by literally calling upon my adrenaline.  Much like meditation and raising your distil body temperature to demonstrate an ability to bring your self into a very relaxed state, I believe something can also be done for bringing your body into a very alert, excited and charged state: you can trigger the flight or fight mode, and I would trigger the fight.  Perhaps it is the runners’ high, but it is something I would call up when running or lifting weights.  It was my special power, perhaps similar to a nitrous boost in a car.  When this would happen, I can feel my body almost go numb and transcend pain, anxiety or apathy.  Unfortunately, this ability has been abscent for the last month or so.  Just last Monday, I went to do single arm bench presses and as I held the weight above my head and torso, while laying on the bench, I knew it was not going to happen.  I knew I was completely tapped and I was only a half hour into my work out.  I put the weight down and headed into the locker room.  That hit me hard.

Later that week, I recieved a message from a friend of a friend who is a mother.  Over the summer, it was discovered that her two children have a degenerative eye condition.  I will not disclose the age of her children, but they are much younger than I was when I was diagnosed.  The tests, conversations and beginning to understand what is developing has been challenging for these kids on many levels.  I know it has also been difficult for this mother and her partner.  Fortunately, we will be connecting in a few weeks to talk about many things.  Obviously, I can lend advice, experience and perspective, but most importantly, I can offer an ear that is familiar with what she and her family have been thrown into; tackling the real challenges of having a disability while facing the ones created by culture.  That’s not so easy.

I went to the gym the day after I recieved that email.  I walked over to the tredmil, turned on my metal, thought of this person and her children and ran 6 miles.  Just days before I had struggled to run more than 3 miles.  I ran another 5 miles the next day and followed that with doing 3 sprints at about 10 or 11 MPH for 1 minute intervals.  Just this morning, as I was pressing 100 pounds on a bar towards the ceiling in a standing pose and pushed up towards my 40th repetition, my arms froze.  I thought of these two children, gritted my teeth and completed my push.  My super power is back.

I have always said that I am able to do these things for reasons that go beyond myself.  Sadly, I lost this focus over the last month as there has been much on my mind.  It feels good to be back at this point in my mental strength, because that is where real strength is.  I must have mind, spirit and soul in line for any of this to be possible.  I do not think of these new people with pitty, but rather excitement.  Excitement to connect and in some way, share.  From that, we can support one another in facing and processing these challenges.  I can imagine that as these kids perhaps become more visible with their loss of vision, some of their peers may hold this against them.  They may judge them based on false assumptions and they may tease them.  Certainly, they will have an amazing number of supportive friends, but those hard moments stick with you, and that’s really challenging.  I hope that this mother will be able to tell her kids about the cool guy who is like them, but runs in marathons and is doing things he never used to do, even when he had vision.  More than anything, I hope I can offer her that.

With the December marathon out of reach, I believe I will simply be left with focusing on Boston in 2014.  I have a great deal of time and have my passion back.  My mission, if you will, is right in sight.  I will become even stronger and faster.  My effort to become bigger and stronger is not out of vanity.  I truly view my body as being a vessel for this message and the more I grow, both mentally and physically, the more able I am in delivering this message.  Hell, even if this was out of vanity, I don’t think I’ve had any more interest from the ladies since I was a “mighty” fellow.

As a disclaimer, I am doing alright, and alright is good enough.  The honesty in this post was not a cry for help, it was simply honesty.  If I ever post a video of myself on youtube, or photos on facebook depicting me with out a shirt on, eating doritos with orange powder all over my bare chest and tears falling into a glass of whisky and Mountain Dew, that is a cry for help.

I’m coming for you, 2014.  I can’t be stopped that easily.


I hated my cane

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 availible 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 imparements 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 supressed much of my memory from those days.  However, I can certainly recall some of my first uses and impressions of having a cane.

I lived out in the middle of no where and we really did not have “buildings”.  We had houses and a small school.  That was it.  Because of this, I had to ride with my instructor a half hour out into Concord, NH.  By New Hampshires means, this is an urban place.  We started out inside buildings owned by the state.  I felt very awkward, but I at least had some privacy in this environment.  I did not have to worry about other kids my age, especially girls, watching me or looking at me.  I chuckle a little at this, but I know some of that insecurity with women still lives in me today.

Then, we moved onto realistic environments.  What did this mean?  This meant that my new mission was to be dropped off at the state house, was required to find the nearest bus stop to take to THE mall and had to then find a certain store in the mall.

I truly thought that the sun was solely focusing on me that day, and with it, the attention of every single person around me.  In some ways, that white cane felt like a compound fracture.  Every time I tapped it from shoulder to shoulder in a slightly circular motion lifting off of the ground stung with great pain.

Going to the mall was the most challenging part of that day.  I entered a place I had been perhaps 100 times, in some ways, as a different person.  I connected with my instructor who was waiting for me and we headed home.  I believe I also immediately folded up my cane as soon as I was allowed to do so.

So why did I write about this?  The conversation about using a cane has come up quite a bit n various social circles I am a part of, especially for those who also have degenerative conditions and are losing their sight… especially for those who are very, very young, like I was.  I painted an honest picture and it was not so pretty.  I do not hide from the truth of my life or feelings.

However, in good time, that white cane that felt like a compound fracture, a white bone sticking through the skin of my innocent arm, began to felt like a break that had been set back into place.  It became strong again.  Make no doubts though, there is still a strong scar of where that break was and it is sensitive to this day, but is much, much better than it was 14 years ago.

Being graceful is challenging.  Being forced to be graceful is a completely different story.  Although, this is a story I know I have the ability to define.  Have I felt pain from my experiences of having a disability? Yes.  More importantly, I realized some time ago that I have the ability and right to define what has been painful in my life and what has been beautiful.  No judgement from another nor act of another can make those claims.  For anyone who can empathize with this situation, and is struggling, you are the one who can define what is painful and beautiful for yourself… and if you are struggling over the use of a cane, my advice is for you to go to the mall.  It actually was not so bad.


The Nazis were not the only ones

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 lense 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 lense 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.

The second chapter of this book, Lives worth living, brings you into learning about the brutal, hateful and violent forms of oppression directed towards the disability community during the early and mid 20th century.  Brutal and violent history towards folks with disabilities?  This can not be.  Well it was, and still is alive today… in much lesser forms, and in some situations, forms just as strong as the Nazi party used.

This chapter informs you about the 1907 legislature that was passed on the state of Indiana to support and carry out eugenic sterilizations.  Originally, this was targeted towards criminals and “mentally insane”.  However, it was struck down, but was quickly replaced with a new law that simply focused on the “mentally insane”.  This law technically stood until 1974.  Below is a link with more detailed information:

http://www.uvm.edu/~lkaelber/eugenics/IN/IN.html

Apparently, the U.S. passed this law before the Hitler and his campaign did in 1933.  In 1939, the sterilization program in Germany was then upgraded to the euthanasia program and turned towards “mercy killings”, or better fit, a “clense”.  Apparently, doctors and midwives were required to report children who showed signs of any sort of great disability.  These children were then brought to 1 of 6 locations, where they were to be treated.  Well, their parents were told they were going to be treated, but they were killed.  Poison, starvation and even abandonement were techniques that were used to clense the population from those with disabilities.  The age was then bumped up to 17 and the program then expanded to include adults.  This program launched 2 years (technically) before the extermination of the Jews.  Many other countries also joined the sterilization of those with disabilities during the 1930s, including Denmark, Turkey and Hungary.

http://www.ushmm.org/wlc/en/article.php?ModuleId=10005200

http://en.wikipedia.org/wiki/Action_T4

I learned of this history some time ago, so this book was not my first introduction to the violent oppression for folks with disabilities, nor other communities.  What hit me even harder this time around was the deep reflection that this point of 50 years was not long ago.  It is within reach of my generation and many others; barely being separated by 1 or 2 generations.  I included the information about Indiana and briefly mentioning other countries who developed policies to not avoid picking on Germany, but to show that this oppression was and is global.  A brother (family is relative in meaning) with choroideremia was told in the late 1960s that he could not have children, as he would pass along the gene for our condition.  As it was stated in the early 1900s, during WWII, to my friend in the late 1960s and during many cases that have gone to court for wheather or not one with a physical disability can claim euthanization, so much of the world has said that this is wrong, this is less than, it is a hinderence and we must have “mercy” for not only those with disabilities, but really for themselves and how they perceive they are impacted by those with disabilities.  This is when and how the medical model has such a profound role in the experiences of those with disabilities; they reflect culture and society by taking claim to what is worth or is not worth life.  This questioning of worth is still existant today, overtly and covertly.

Have we come a long way since these terrible policies?  My goodness, we definitely have.  However, I can not help but feel that so much of what we are still fighting today in any arena, whether it be social, personal or political, is derived from this historical context that is much more recent than it is distant.  Think about it, your grand parents or perhaps even your parents were alive during this time.  Culture and social evolution move quite slowly.  Hell, the Americans with Disabilities Act was not even passed until 1990.

I would like to think that when I run with my guide runners, I am at the gym or I am in the media (now hopefully a documentary), I am one of many who always have and always will show the world that our being is worthy; our lives can be and are rich.  When we run in marathons, we show young citizens that folks with and with out disabilities can play together and it’s a blast.  This is why crossing the finish line has never been the most important piece.  I look very, very forward to crossing the line next year in April, but the most important mission has been accomplished and always will be.

Damn I look forward to going to the gym tomorrow.


It will fucking match

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

www.doodlesports.com and the writer/owner of this great blog, Rob, wrote that he wonders how many runners will take up the BAA on this opportunity.  I also am quite curious.  So much happened that week and I hope that folks are processing everything as best they can.  A couple who go to the same gym as I told me about how one of the spouses who was running that day made it to mile 25.8 when she was stopped.  She only had .4 miles left.  I could only imagine how badly she wanted to finish and that she wanted to find her partner. 

It is hard to describe how I feel about registering today.  I am excited to register for next year and run again; I am excited to once again stand for something.  At the same time, I am in a funk… perhaps some in some state of shock.  Even with writing this post, I am pausing more frequently than normal.  Something is just up.

The 2014 Boston Marathon will bring many emotions.  Some will be very joyful and some will break my heart.  What I do know is that they will push me along those 26.2 miles that I have been trying to complete for the last 3 years.  Between now and then, everything is just practice.  For me, there is only one marathon and that is ‘Boston.  It’s time to get busy.

An interesting part of the online registration for me was when the form asked for me to notify if I had ran in this marathon before.  I selected yes and then the next prompt asked me to identify how many I had completed.  Obviously, I selected none.  Once I clicked to go to the next page, an error message came up and my computer read outloud that these two points of data entry do not match.  I had to go back and select that I had not run before and that I have completed no marathons.

Next time, when I fill this form out for 2015.  Those two points of data will fucking match.

Sorry for the language, I’ve got some blind man rage right now.

The doodlesports.com article I mentioned earlier:

http://wp.me/p2puol-1fP


Let’s make a movie

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.

It is no surprise that my blog has peaked with hits when I have been featured in media, especially videos shown on various news programs.  People love the raw and close touch that visuals and sound bring.  The written word is very profound and I have worked very hard to depict and discuss with all who read this as best as I can.  However, I know there are other means for me to get my mission and story out to society, and that is through a diversity of avenues.  My story is quite possibly at its’ most climatic moment, and I want to capture the next 10 months on film and create a documentary.

At first, I counted down 15 months until I would run and cross the finish line in my first Boston Marathon.  Then, the heat came out in full force and destroyed myself and hundreds of other first-time-runners and we did not make it across the finish line.  Shortly after that first marathon, I lost both of my parents.  My mission and connection with the Boston Marathon became even greater and I battled my way through physical injuries and depression.  Since that first marathon in 2012, I then counted down approximately 850 days until I thought I would cross the finish line in the 2013 Boston Marathon.  Then, the bombings and attacks happened and I was haulted at mile 20, being told once again that I could not cross the finish line.  I could not take back the Boston Marathon as in 2012, I felt it marked the most difficult chapter of my life.  At this moment, I will have counted down approximately 1,200 days between the morning I woke up and the actual day I will have crossed the finish line of the Boston Marathon, which will happen in 2014.  The constant obstacles, tragedies and heart break have not been easy.  Nothing has been easy for me, but nothing will stop me.  As I have stated, my mission is still the same and is only stronger.  I feel greater drive and spirit when I train, as I know it meant the world to my parents and made them as proud as they  had ever been.

For anyone who reads this, please forward it along to friends, colleagues or family who know of those who work in film and media.  I know this is the next step in reaching others.  The most important part of my vision for this film is to have it be raw.  I do not want to shy from the truth of any of my experience in and outside of training for the marathon.  Yes, much of this film will focus on working to inspire others, no matter what their circumstances are, to go after their dreams and hopes.  On the other hand, to go beyond the safety of saying this is about “adversity”, this is also about grieving.  I have had a unique experience in grieving over the constant loss of vision, but now the loss of my parents by age 27.  This is about still finding purpose and faith when crucial elements in your life have been taken away at the snap of fingers.  The fingers of god, destiny or just chance, I do not know.  But that is what this is really about.  Spread this post.  Let’s make a movie.  I also want a rocking soundtrack filled with sweet montages.

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.

It is no surprise that my blog has peaked with hits when I have been featured in media, especially videos shown on various news programs.  People love the raw and close touch that visuals and sound bring.  The written word is very profound and I have worked very hard to depict and discuss with all who read this as best as I can.  However, I know there are other means for me to get my mission and story out to society, and that is through a diversity of avenues.  My story is quite possibly at its’ most climatic moment, and I want to capture the next 10 months on film and create a documentary.

At first, I counted down 15 months until I would run and cross the finish line in my first Boston Marathon.  Then, the heat came out in full force and destroyed myself and hundreds of other first-time-runners and we did not make it across the finish line.  Shortly after that first marathon, I lost both of my parents.  My mission and connection with the Boston Marathon became even greater and I battled my way through physical injuries and depression.  Since that first marathon in 2012, I then counted down approximately 850 days until I thought I would cross the finish line in the 2013 Boston Marathon.  Then, the bombings and attacks happened and I was haulted at mile 20, being told once again that I could not cross the finish line.  I could not take back the Boston Marathon as in 2012, I felt it marked the most difficult chapter of my life.  At this moment, I will have counted down approximately 1,200 days between the morning I woke up and the actual day I will have crossed the finish line of the Boston Marathon, which will happen in 2014.  The constant obstacles, tragedies and heart break have not been easy.  Nothing has been easy for me, but nothing will stop me.  As I have stated, my mission is still the same and is only stronger.  I feel greater drive and spirit when I train, as I know it meant the world to my parents and made them as proud as they  had ever been.

For anyone who reads this, please forward it along to friends, colleagues or family who know of those who work in film and media.  I know this is the next step in reaching others.  The most important part of my vision for this film is to have it be raw.  I do not want to shy from the truth of any of my experience in and outside of training for the marathon.  Yes, much of this film will focus on working to inspire others, no matter what their circumstances are, to go after their dreams and hopes.  On the other hand, to go beyond the safety of saying this is about “adversity”, this is also about grieving.  I have had a unique experience in grieving over the constant loss of vision, but now the loss of my parents by age 27.  This is about still finding purpose and faith when crucial elements in your life have been taken away at the snap of fingers.  The fingers of god, destiny or just chance, I do not know.  But that is what this is really about.  Spread this post.  Let’s make a movie.  I also want a rocking soundtrack filled with sweet montages.


Let’s run for Richard

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:

http://www.youtube.com/watch?v=yl8uTN22Ujk

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.


Me talking to children? I hope I make sense

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!

http://www.crowdrise.com/ganwarriorscom/fundraiser/cindyjessopthomas


Beef patties and crying in the myst… I made it

I graduated from high school in the spring of 2005.  At that time, my vision had just crossed over into very difficult territory.  Seeing faces, depth perception and reading, especially reading, became nearly impossible.  I knew that my life was entering a completely new stage and that my educational experience was also going to change.  For many reasons, my educational experience was about to become much, much more challenging.

I entered UNH in the fall of 2005 and started using a cane on the same day I moved on campus.  Not only was I moving out my home, I was literally stepping into a new identity filled with new experiences and challenges.  My academics became quite a challenge.  Alternative text, addressing inaccessible aspects of course assignments, having exams read and scribed, sitting down with faculty before class begins to explain my background and possible needs and dealing with ignorance and blatent oppression, to some extent, made my academics quite challenging.  I have had wonderful supports and resources along the way, but there have been many bumps in the road.  These bumps were smaller in number, but a spider is a small animal.  Although it is small, one bite can possibly kill a person, can’t it?  I’ve been biten quite a few times.

I have had faculty single me out and marginalize me in class.  Guest speakers have entered the room and made comments about the current culture of students in higher education today and refer to how young, unprofessional or wise they are, certainly those wearing sunglasses indoors during a class, and they look at me, point me out and remind me of how unknown my community is and that she and many others have not been taught that someone wearing sunglasses indoors, who you did not see walk in with a cane, may be visually impaired.  I have been infantilized by faculty who call out in the middle of a class and ask who will read an article that was just handed out to me, because they forgot to send it via email before class, so my computer can read it to me privately.  I have had faculty hault communication with me before a class begins as they are concerned about doing something wrong and feel the need to immediately contact their Dean for guidance.  They seek guidance for somethng that is rarely discussed and connected with faculty development or discussed in general conversations about teaching.  My community, like many others, are marginalized.  I have felt worry, intimidation, nervousness and isolation towards me from all sorts of people over the last 8 years of being a student in higher education.  I have felt  the feeling of being the sole visible minority on campus, using a cane and being easily identifiable as having a visual imparement.  I have also been very, very strong.

I came to Boston in fall of 2010 to start my M.A. in Higher Education at Boston College.  It is typically a 2 year program, but with the passing of my parents and working full time during my second year, I took a leave of absence and did not register for my last course until this summer.  I still have my final exam in October of this year, but I had my last class this past THursday.  It was a wonderful course and a class mate of mine brought a delicious treat.  They were beef patties, a West Indian food that consist of ground beef and spices baked inside of a delicious dough.  Class ended and there was only one left.  I happily took the treat and headed home.

As I was walking through the incredibly quite campus, eating my beef patty and enjoying the rainy weather, it hit me.  I had made it.  This wall, this thick skin… this guard I have put up to survive this adversity suddenly came down and all that I had experienced over the last 8 years hit me like a brick wall.  I have survived and I have won.  All of the challenging experiences and wonderful experiences flew through my mind like a fast forwarded home movie.  I could see the 19 year old me on move in day at UNH, using a cane for the first time, not too sure of how his first year of college, or the rest of his life, was going to go.  I could recall the worry in my parents about the same concerns.  I could recall, all of the monumental victories over the last 8 years which have led me to the success that I now have.  I was so filled with pride.  I had won this war.

I began to cry and felt this urge to announce my victory.  Rather than shouting into the quite air of an empty campus so late at night, I stood on top of a concrete fixture and raised my hands into the air.  I stood victorious and claimed my dreams.  I know that my parents, where ever they are, were also raising their hands in the air.  This was something my entire family faught for.  Not just I, but we, made it.

The numerous times my father stopped what he was doing to help me bring my broken computer to get repaired.  All of the papers my sister has proof read and said were fantastic.  Every single hug my mother gave me that I know was out of love and pride for how far I had come and was going.  At 9:00pm on June 27th, we made it.


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