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I had a one woman epic pity party this week.  I didn’t send out any invites, didn’t make any food, and my poor guide dog laid there in concerned silence, probably wondering to himself, “when do we get to go to the park and throw the ball like we do every day after she trains?  And BOY, I guess she really must like that couch a lot.”

For all of the wonderful things I’ve proved to myself, my family, friends, and the world that I CAN do as a blind woman, I still can’t help but occasionally get frustrated with the ‘Can’t’.  It’s a word I NEVER use, but it dared to enter my mind this week.  Maybe not ‘can’t, so much as ‘this is fucking hard’ came immediately to mind.

I ran through every motivational cliché I could muster.  “God is testing your will; If it was easy, everyone could do it; nothing worth achieving is done without hard work; a little bit of sacrifice will pay dividends; everyone has bad days.”  Still, alas, I was stuck in a wallow of self pity and frustration.  All of the ‘control the controllables’ and rationalizing and problem solving on paper with bullet point lists of how to achieve each daunting task just wasn’t cutting it anymore.  I wanted ONE, just ONE, ‘easy’ day.

A day like back when I was fully sighted.  When I could throw on my running shoes, download stuff onto my iPod (yes it was before I could afford an iPhone) and just head out for a solo run to the beach.  Me, the road, the trees whirring by me in a blur of green, and some great tunes to make me smile.  A day where I reached into the fridge, only to discover I was out of Soy milk, then I would go to the front door, grab the keys to my convertible and make a quick trip to the market a few miles away.  I would then remember I had clothes I needed to take to Goodwill, and could run back home, toss them in the backseat, and drive around aimlessly until I found a convenient drop box somewhere in town.  I could pass by a new wine bar opening across town, and call my friends to meet me there in 20 minutes, waiting at a table for them, already working on my first round of tapas.  But now?  I can’t. I can’t do any of those things.

Being blind is about planning, surrounding yourself with help in many forms, and only extremely rarely as an athlete are you doing anything completely unsupervised or untethered.  There’s no ‘thought clearing run by yourself after a bad day at the office; no walk along the beach to get out of your own head; no delicious drive down to the beach for a little dip to cool off on a hot summer day.  Organizing swim, bike, run workouts and chiropractor, sports massage, acupuncture and the million doctors appointments that come along with blindness caused by a rare disease gets fucking exhausting.  It requires a Masters in HR, event planning, and bartering, finagling, and creative logistical planning that borders on heroic and insane.  Spontaneity sometimes feels like a thing of the past, and the planning involved in even simple tasks- a guided run, a gym session, a doctor’s appointment 20 minutes away, feels just, well, too much.  Sometimes to the point where the fun feels gone.

I remember my friend who is totally blind and uses a guide dog telling me about an encounter he had at a NYC grocery store.  Where a person came up to him and was incredulous that he was shopping on his own.  Blessing (yes that’s his awesome name and it totally fits) laughed and told the guy about the technology in his iPhone that he was using in order to do so, and explained to him that he often just asked the shopkeeper where things were.  Simple.  But if you’re sighted, it does indeed seem impossible.  And rather amazing.  As Blessing said perfectly, “Only a blind man can get an ‘atta boy’ by buying milk for himself.”

I grew weary rather quickly of the ‘atta girls’ I was getting as a newly blind person 9 years ago, and decided that I was going to and NEEDED to do MORE as a blind person than I did as a sighted person.  I needed to prove to me, and others that it was simply an inconvenient nuisance of a diagnosis that I could and would work around.  Somehow.  Someway.  I found my way back to ‘Can’.  I put it back in the vocabulary cue, ensuring that somehow, I would.  And I did.  I passed my Society of Wine Educators exam.  I became a triathlete.  I managed an impossible diagnosis and huge team of specialists, I achieved making the National Team, a World #4 ranking, and becoming the first blind female to complete an Xterra off road triathlon.  Am I amazed at all of this?  Sure.  But is it what I WANT to do? 

I WANT to wander, to lose time doing nothing while ‘out and about’; I want to look at a crowded city street and not be intimidated as hell of getting hopelessly lost or worrying about knocking someone over I don’t see.  I want to know that I can go out at night in fancy shoes and not worry for my ankles’ safety; I want to be that girl, at the bar, that the handsome single men notice, NOT because of my cane or dog, but because I’m Amy- a smart, funny, relatively attractive blonde single woman.

Don’t get me wrong.  I am happy in many, many ways in how my life has changed.  I have a four legged partner to constantly talk to and interact with, who hangs on my every word and worships the ground I walk on.  Available to me 24/7.  I have made friends around the entire world that I never would have met had I not lost my vision.  I am tackling new sports and adventures I never would have even known about before blindness.

What brought this all to a head this week?  I’m in my final stages of preparation for World Championships in September.  I have an incredible amount of pressure.  If I don’t win, I get no funding from Team USA at my next two races, and need a top 4 finish at worlds and a very fast time to MAYBE get a few hundred dollars per month in support of my racing.  I’m freaking out.  So what do I do when I’m worried about performing at my best?  I train.  I train fucking hard.  But I can’t do that without a guide.  Or the expensive medical team that keeps me going each week while training this hard.  The treadmill is dangerous at the speeds I need to run, and terrifies me.  My hopper of fast females are busy with kids, vacations, jobs and their own training.  And I haven’t ridden my precious road tandem once in the three months since I moved here.  I can’t do it without a pilot.  Here I am in the most gorgeous weather in the USA, and I feel trapped.

I flirted with the idea of running solo around a dirt loop at the YMCA, but realized there are children there.  Children I won’t know are there unless they are somehow lined up perfectly in the teeny 2% sliver of usable vision I have.  Children are unpredictable.  They move.  Sometimes they don’t make noise, and I don’t know they’re there.  I fantasized about doing a ‘brick’ workout from my apartment where I run down my street after biking indoors on my trainer until I realized it was truly no longer possible.  I can’t run, on a road or in public places, by myself.  Not now, and maybe not ever.  Hard, hard, fact.

But today reminded me of the blessings that my guides are when I have them, and I’m grateful that my ‘stable’ of willing guides is growing the more I settle into my new west coast training base.  Twice this week I was spared from two separate car accidents while running on the roads thanks to them.  My coach even got hit.  While protecting me.  And today my friend Cindy helped me find my limit on an excruciating long run (my limit is apparently a heart rate of 196Bpm FYI), which I NEVER would have pushed to on my own, and therefore would never really KNOW how fast I could be.

I mean what a BLESSING is it that I have this community, this FAMILY of guides, coaches and medical practitioners and sports specialists all getting behind me, helping me be my best self each and every day?  Do I WANT to do it on my own?  Sure.  BUT I’m also beyond grateful that no, I never ever HAVE to.    Maybe someday I’ll get the chance to do that solo run to the beach in a whole new way I never imagined.  And maybe, just maybe, having company is just well, better.


Join the discussion One Comment

  • Conor says:

    Beautifully written and a heart-rending insight into the challenges faced by any who find themselves in similar positions.

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