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Tag Archives: acceptance

Every Race is a Journey: When Not Great is Enough

16 Sunday Feb 2020

Posted by blindbeader in blindness

≈ 2 Comments

Tags

acceptance, ambassadorship, goals, reflections, running

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A year ago, I ran my first Hypo Half – and my second half marathon. I had one goal for that race – to beat my first half marathon time – and I came through with flying colours. Right after that race, I hit the pavement and started training for my first marathon in June.

A year later, I’ve run two marathons, raced another half, and enjoyed a beautiful half marathon that was treated like an autumn training run. The runs I’ve raced, I’ve run faster than my previous race. Even when things hit the skids in Sacramento for my second marathon, I still managed to beat my first marathon time six months earlier by nearly ten minutes. I’ve got three marathons planned for 2020, and my goal is to run each one faster than the last. I’m glad I’ve got that planned – because I realize now that if I hadn’t, Sacramento might just have made me think twice about running marathon number three.

I decided to join the Kool Kids (a group of runners who trained together for the Sacramento/Honolulu clinic) in running the second Hypo half race in Edmonton this morning. A year ago, I ran that race with one goal (see above) and something to prove – that I was a bit of a badass and could tackle all that winter had to throw at me. This go-round, the Kool Kids wanted a training run (a 23 km run was slated for our training plan, so a bit more speed and a bit more effort provided the equivalents). Ed, my regular guide runner and training partner, was off on a cruise, so my friend and fellow Kool Kid Mike agreed to guide today, coming on the heels of his best-run marathon just a week ago. I decided to follow Mike’s lead – to wear my Hypo half toque backwards – then turn the logo to the front when we crossed the finish line. It’s a silly thing, I suppose, but we’re runners… enough said.

We started out strong – the first 4 km were solid. I could maintain that pace forever, with the light dusting of compact snow, some icy patches, but nothing to worry about. But the roads and sidewalks became progressively unstable and uncertain the further we went. We had half a kilometer of good footing, then about half a kilometer of snow that felt like running in brown sugar (Mike’s words, not mine). As time went on, I realized that my original hope (to beat last year’s Hypo time of 2:28:22) wasn’t going to happen. My legs got so tired in trying to keep me balanced. I drew encouragement as I waved at other runners who cheered as we passed (Mike says he wants to guide me on another race – he gets more people smiling and cheering for us than he ever has running solo).

“It’s a training run,” I kept telling myself.

But training runs don’t have cheer sections or water stations or music at speakers at the finish line. Training runs don’t trick my brain into thinking we’re RACING so we should run faster. Training runs don’t make me feel like crap… and this one was doing a spectacular job of that. I had to salvage this slow run somehow.

Seize the day! Take the opportunity to try different fuel and hydration options. After what happened in Sacramento, this seemed like a wise choice. I could run a half-marathon – I knew that – but what might be helpful on a race course? They had Gatorade at the water stations, and there’s no better time to try something new when you’re not expecting a speed record and there’s likely going to be parallels to a time in your not-too-distant future that you are. Kilometer 14 saw me with a paper cup of Gatorade – and while I’m not sure it positively impacted me, it definitely didn’t affect me negatively. Score one for Gatorade! Mike and I chatted, waved at more runners, kept pace with another runner and introduced ourselves after the fourth time we swapped positions on the race course.

The finish line drew near, after another kilometer of navigating across a dozen or so unshoveled driveways. I just wanted it to be over and to get inside for the bacon. I flipped my toque to show the logo on the front and crossed the finish line in what is truly the slowest half-marathon I’ve ever run – in fact I think even some walkers came in before I did.

It’s been a few hours now. I’ve had my fill of bacon and fruit – and realized once again that I don’t want potatoes after running a race. I’ve dissected the race, and my thoughts, and I realize I’m carrying some stuff that isn’t mine to carry.

I don’t want people to think that I’m a slow runner because I’m blind; I truly think I represented blind people badly. I realize I’m carrying this because often times I’m the only obviously blind runner on a race course. But I have always hated the idea that just being out there is enough. It’s a strange dichotomy – I didn’t throw everything I had behind this race, and in a way I wish I had. But that would’ve been foolish, truly a recipe for injury.

I need to let all that crap go!

I’ve had some time to think, and while I know people will think that my getting out there was inspirational because BLIND – or my speed (or lack thereof) was attributed to nonfuctioning eyeballs – I know the whole truth.

I went out there to run with the Kool Kids – and I did.

I went out there to finish – and I did.

I went out there to try free and different fueling options – and I did.

I went out there to train – and I did.

None of my actual goals today had anything to do with pushing myself to my limits for Hypo. None of my goals today included proving anything to myself as a runner – I’ve already done that. My goal wasn’t to race Hypo… my goal is to train for Vancouver Marathon in May.

And you know what?

I did that today, crappy footing and all.

So maybe the takeaway from this run – a training run with a medal and a brunch – is to realize the goal that you’ve set may not be for today. It may be a stepping stone, a building block for something further down the line, maybe months or years in the future.

And while I’m all for doing your best… sometimes your best in that moment is knowing when to step back and realize that maybe, just maybe, for a few moments in time, just getting out there and meeting your own objectives – whatever they are – is enough.

And it is enough.

 

Me and Mike at Hypo

An Open Letter to Those who Get it

23 Saturday Mar 2019

Posted by blindbeader in blindness

≈ 2 Comments

Tags

acceptance, belonging, gratitude, intuition, open letters

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If you’re reading this and think you might recognize yourself, you probably know who you are. If you’re reading this and wonder why I’m writing this about you because this should be common sense, you probably know who you are. If you’re reading this and know I’m writing about you… I’m probably not.

 

I’m a person with a visible disability. You are somehow part of my life. You could be a colleague, a teacher, a friend, a stranger in line at a coffee shop… less commonly, you could be a family member or a romantic partner. Your life could’ve intersected mine in a hundred different ways. Before meeting me, you’ve usually had little to no experience with the day to day realities of living with a disability.

 

And yet… you get it.

 

You get it in ways I can never put into words until I fumble and falter and try and thank you for just understanding so I don’t have to explain at all. When I stammer out the words of joy and gratitude I feel from deep in my soul, more often than not, you remain still for a moment, eyebrows raised, and ask me with all seriousness what the big deal is. Because more people should understand. You think that more people should stop asking intrusive questions. You believe that nobody should grab my body when “trying to help”. You think I belong at the table just like everyone else, and you’ll quietly move heaven and earth to level the playing field so I’m part of your group and not just a token participant. You understand why some ideas are so harmful. You may not know what my life feels like, but you leave me plenty of open space so that I can fill in the gaps – not because I owe you an explanation, but because you know that so few people leave their agendas at the door.

 

You may be a new friend, or a colleague who got to know me on that project one time. You may be a stranger who offered assistance when I was standing in line at a coffee shop and just knew how to help and let me be when it was no longer required. You may be a random group of people who regularly play board games. You may be a part of a group of musicians. You may be a member of a sports team or other club. You could literally be anybody. Often times, you intrinsically understand me – and my life with disability – better than many of my family members, partners, or friends. As much as we love them, there’s always been a growing experience, an adjustment period, a drawing of boundaries. With you… that’s never once been there. You’ve always just… known. You’ve never called attention to my disability, but you’ve never neglected its presence either. You’ve never asked questions unless they directly flowed out of a conversation we’ve been having. You’ve understood – with no input from me – why little things that many people say shouldn’t “get to me”… get to me. You’re furious on my behalf at intrusions into my privacy, and yet you’ve given me space to fight the battles myself. You’ve presumed me competent when I’ve spent so much time trying to convince people that I’m not just a child in an adult body. For all of this, you have my undying gratitude.

 

You get it.

 

All of it.

 

And you’re right, more people should. But maybe, just maybe, if more people did… I wouldn’t be so aware of the rare and precious mystical belonging places. It’s more than the absence of negatives; you’ve given me something that so few people have… the gift of true acceptance. Thank you, from the bottom of my heart.

 

Go ahead, raise those eyebrows. If you think I might be talking about you – if you remember some stammered, incoherent conversation about thankfulness and gratitude toward you – I probably am. If you don’t remember this conversation… that’s OK. I’m probably not writing about you directly right now. But I could be… or someone else could be down the line. Read this post again. And again. And again. And let it sink in. It’s not hard to “get” disability; it’s a leaving behind of preconceptions, a listening to what’s being said, an opening to a change in script. I’m eternally thankful for people who intuitively “get it”, and also for those who want to get it, own their missteps, and don’t lay all the emotional labour on me. It’s never too late to move forward, to be that person that doesn’t understand how something so simple can be so profound.

 

And yet, it is profound.

 

You get it.

 

And these fumbling, faltering words are the only ones I can come up with to adequately express myself. But maybe, just maybe, they are enough.

Book Review: Touch the Top of the World

28 Tuesday Feb 2017

Posted by blindbeader in Book reviews, Nonfiction

≈ Leave a comment

Tags

acceptance, blindness, mountain-climbing, teamwork

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I’ve always been a little put-off by the idea of superblinks – those blind people who do everything extremely well (have AWESOME jobs, perfect independent living skills, or are the first blind person to do something that would be a huge challenge for ANYONE), and think that all of us should be like them. Yet I have vivid memories of a news interview with Erik Weihenmayer, the first blind man to summit Mt. Everest, and thinking “WOW! That’s amazing!” – not in an amazing-for-a-blind-guy sort of way, but more like amazing-because-it’s-HARD. Years ago, I heard of Erik Weihenmayer’s first book, “Touch the Top of the World“, and when friends of mine described the author as a “superblink”, I put the idea of reading his book on a top shelf in my reading closet. After all, I’m not that interested in mountain climbing, and who wants to read a book about a perfect accomplished blind person? Not me!

But when I saw his second autobiographical book, “No Barriers” was being released early in February, which sounded like an interesting read, I figured I would go in from the beginning. Sure, I thought, I’m interested enough in mountains to make “Touch the Top of the World” worth my time, and maybe, just maybe, I could slog through how perfect this guy’s life was and how effortless he made everything seem…

Um… I was so very wrong.

 

About the Book

 

Erik Weihenmayer was born with retinoscheses, a degenerative eye disorder that would leave him blind by the age of thirteen. But Erik was determined to rise above this devastating disability and lead a fulfilling and exciting life.

In this poignant and inspiring memoir, he shares his struggle to push past the limits imposed on him by his visual impairment-and by a seeing world. He speaks movingly of the role his family played in his battle to break through the barriers of blindness: the mother who prayed for the miracle that would restore her son’s sight and the father who encouraged him to strive for that distant mountaintop. And he tells the story of his dream to climb the world’s Seven Summits, and how he is turning that dream into astonishing reality (something fewer than a hundred mountaineers have done).

From the snow-capped summit of McKinley to the towering peaks of Aconcagua and Kilimanjaro to the ultimate challenge, Mount Everest, this is a story about daring to dream in the face of impossible odds. It is about finding the courage to reach for that ultimate summit, and transforming your life into something truly miraculous.

 

Family Comes First

 

Erik has not always been totally blind. While he was visually impaired most of his early childhood, he still played sports with his brothers and friends at school. His family knew that his vision would change and eventually be non-existent, but Erik used the vision he had when he had it. When he discovered one day he couldn’t see things as clearly to ride his bike down the ramp that had been constructed, his father painted huge visible lines on it so he could still enjoy his bike tricks. Erik’s mother hoped for a cure for her son’s blindness, while his father (a military man) pushed him to do whatever he did to the best of his ability – even if it was done differently, even if it was scary, even if it included having others beside him and behind him cheering him on.

This sets up a backdrop of immense family support. When Erik lost his remaining vision and was forced to rely on a white cane, his anger boiled over. He would throw his canes into the river, purposefully break them, drop them down sewer grates. He refused to read braille and use other adaptive techniques. He was neither belittled or pitied, but was told to get back up and learn to deal. But he was not going to live his life of blindness alone. Sadly, his mother died very suddenly not long after Erik lost his sight completely. One of the main sources of encouragement and support was gone. But he still had his siblings and father to help him push through.

 

A Place of Acceptance

 

Something changed when Erik tried out for the wrestling team. He discovered that blindness was not a factor. He didn’t have to try to learn to do things differently because of his blindness, but he didn’t feel like he had to downplay it, either. He grappled and wrestled and got hurt and got back up again. And it made an incredible mark on his life; he later became a wrestling coach.

Somewhere along the way, Erik discovered that it was so much simpler to adapt to his blindness rather than fight it. He went on to college, tried to find a job (where, familiar to blind job-seekers the world over, he was told he couldn’t do job duties XYZ and shown the door), and continued with sports and hiking with his family and friends.

He landed a job teaching school in Arizona, where he met the two great loves of his life – his wife Ellie… and rock-climbing.

 

It’s Not Just about Erik

 

When you read news articles or hear interviews about Erik being the first blind person to summit Mt. Everest, the team beside and behind Erik – if they are mentioned at all – are downplayed. Not so in this book. The friends, family and guides who supported him with both practical and physical help when he began climbing rock faces – and, later, the tallest peaks in the world – are fully fleshed out. From one team member who was perpetually cracking practical jokes, to another who was constantly late or forgetting gear (most notably a headlamp, when Erik was the lead climber on a night-time descent), to a young man whose dream of summiting one mountain was cut short due to a serious health concern… Erik makes no apologies for being part of a team. Sometimes he felt like he slowed down the team, forcing them to accommodate him; and other times, his ability to navigate in the dark made him a strong asset. Those on the peaks and those on the ground were all part of this journey, and Erik is not shy about sharing this information.

 

Conclusion

 

We knew – upon publication of this book – that Erik had summitted Mt. Everest. This, however, was not detailed in this book. I didn’t realize until recently that he hadn’t hit the summit of the tallest mountain on each of the seven continents until 2008 (more than six years after the book’s publication). I can’t decide if this adds to this book’s charm – Erik Weihenmayer is a work in progress – or if I find the publisher’s summary misleading.

If you’re at all interested in books about mountaineering, this book is a unique look at the challenges and successes of a blind climber. Like many climbers, Erik has a deep respect for the mountains – for their unique weather, their surface, their ruggedness, their beauty. Blindness was sometimes a factor in climbing, sometimes not.

As a memoir of blindness, I found this book both riveting and complicated. Erik felt like both an asset and a liability on the peaks, but he was never afraid to pull his weight. Sometimes this meant learning to do things flawlessly – because his life, and that of his teammates – depended on it. He had to abandon more than one climb due to illness, injury, or poor weather. Sometimes he powered through intense pain to summit a mountain, and paid for it later. Sometimes he knew when it was time to let it go for now and try again.

“Touch the Top of the World” is more than a memoir about blindness, adaptation, or mountains. It’s about all three in a terrific combination. It’s about grit and determination, about learning your own limitations and sometimes redefining them. I laughed and cried at various points, both poignant and amusing. Erik Weihenmayer may have been described by my friend all those years ago as a “superblink”, but I’m not sure I agree. He’s a man who loves the mountains, who loves to set goals for himself, and realizes the important value of teamwork.

5/5 stars.

Book Review: Not Fade Away

31 Monday Oct 2016

Posted by blindbeader in Book reviews, Nonfiction

≈ Leave a comment

Tags

acceptance, Book reviews, deaf-blind

Years ago, I read “Not Fade Away” by Rebecca Alexander, who most recently has (among many other things) been part of the Foundation Fighting Blindness’ controversial “How Eye See It” campaign. I found her book compulsively readable, in a chatty, conversational style, even as I grew frustrated with her desire or need to hide her deafness or blindness or, alternatively, push herself SO hard. Without taking away from her own lived experiences (of which she is incredibly self-aware), I wish (and maybe she does in hindsight) that she’d made life easier on herself by reaching a place of acceptance earlier.

Last year, I introduced you to Tracy in my post written by deaf-blind women. She shares my overall impressions of the book, as well as some of Rebecca’s own lived experiences. She graciously allowed me to share her own review of “Not Fade Away.” Take it away, Tracy!

 

Tracy’s Review

“Not Fade Away” – about a woman slowly losing her hearing and vision – may read as inspirational to most people, but for me as a deafblind woman it just irritated me.
We have shared experiences in deafblindness (in her later years after she finally accepted it). We both have trouble hearing and seeing in dark, noisy places; we were reluctant to start using a white cane; we both have a cochlear implant; and we both have similar reactions from the public such as asking if we need a wheelchair. We both are uncomfortable about being called someone’s “inspiration” just for dealing with our everyday lives. I also connected with the author in her coping skills as a child. We both believed we weren’t good enough for our parents, escaped a lot into imaginary worlds in our heads, and made up stories to try and get other kids to like us.
The book is described as “a memoir of senses lost and found”, yet it reads like a diary in mixed chronological order of memories of her parents’ divorce, her brother’s mental illness, her eating disorder, her fight with self-image and such. Much of the reference to her Usher’s Syndrome was dedicated to how much she hated and all the attempts to deny it even when it was obvious to those around her.
I get that she doesn’t want her deafblindness to be at the forefront of everything, but denying that she has it is like denying she has a nose on her face – almost everyone can see that she does. She could save a lot of frustration by being upfront about it.
Maybe it’s my background of already been born deafblind and not having to go through the transitional period of losing senses that made for my jaded view of this book. Maybe it’s my nonchalant attitude on life. I’m not afraid of letting people know about my deafblindness and what I need for accommodations. This is who I am, it’s a part of me and if you don’t like it, fine, go about your own life, your loss not mine.
Even though the author never displayed a “victim mentality” that some people develop after a disability diagnosis, she went the opposite way of being an over-achiever so that when people find out she’s losing her hearing and sight that they’ll like her anyway.
I just wanted to shake her and scream “there’s nothing wrong with being deafblind! You are still going to be you and you can still do everything and you have done a lot more than most able-bodied people! So just ACCEPT it! Who gives a crap what others think or how they view you!”
She states in a chapter in the middle of the book “I have a true understanding of what it means to take each day as it comes, with its joys and sorrows and complications, and to make the most of it.” This irritated me because I felt that she never truly did learn this, as later chapters still show her denying and excusing her losing vision and hearing. She also said in a chapter near the end, “I was only going to make life harder on myself by not accepting help.” It would have made her life a lot easier if she’d accepted this 50 chapters ago.
We all know getting a “terminal” diagnosis is dreadful and life-changing. Everyone would go through the different stages of grief of denial, anger, bargaining, depression and acceptance. I just felt that the author spent about 3/4th of the book in denial.
This book just did nothing but aggravate me and left me confused – why couldn’t she just get around to accepting it?

 

Tracy and I both give this book a 3/5-star rating.

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