Tag Archives: personal

Blind Lady Gets Sh*t Done: Laying the Ground Work

16 Thursday Jan 2020

Posted by in Blind Lady Gets Sh*t Done, blindness

≈ 6 Comments

Tags

, , ,

Click here to listen to a reading of this postDownload

Life seems to have a way of changing us, and teaching us lessons along the way. Sometimes you’re forced to grow, sometimes you can choose to learn. Sometimes you start a thing and you realize along the way that you’re not the same person you were before you started.

I’ve been an adult for almost half as long as I’ve been alive. Over the years, I’ve rented apartments (alone, with a roommate, or with my husband), and have been a partial homeowner for nearly a decade. I’ve been out from under my parents’ roofs since I up and moved to Edmonton more than fifteen years ago. But if I’m completely honest with myself, I must acknowledge I can get by on my own… but I haven’t been as self-sufficient as I’ve told myself I am. That’s a bitter pill to swallow. It’s only been recently that I realized I spent a long time living in a house where – often times – things just didn’t get done. This is not a negative judgment, an assigning of blame, a falling on my sword. The reasons for this pattern are not important, it is simply a fact. Things just got let go.

And I’ve hit a point – and a stage in my life – where if I want something done, I do it myself. Because I’m the only one that can change how things are, so if I want things to be different, I’ve gotta make it happen.

I’ve been living on my own – for the first time in over a decade – for nearly six months, and I’m in a position to be able to make this house my home. I’ve always claimed it as my home, and it is, but I have felt I need to make the changes – big and small – to not just make it my home, but welcome others to it, too. It’s overwhelming – my place isn’t small, and needs a lot of work – but I have abdicated too much for too long. It’s time I take the bull by the horns and get sh*t done. It will be a work in progress – my house is not going to be a magical showplace. It will be imperfect – heaven knows I’m not the best housekeeper in the world (and, no, it’s not solely because I’m blind). I fully expect to fall on my face, to make mistakes, to just not wanna do this… but the time for changing of long-standing patterns is now.

My goal is to learn stuff, to be productive, to get to know the nooks and crannies of the home that I love. how I’ll get there is to tackle one non standard/maintenance project every week for 2020. It doesn’t have to be a big thing – in fact the big things usually are the strongest motivators – but it just has to be a thing that isn’t something that needs to be done on the regular, like laundry or dishes or whatever.

It’s taken months for this goal to take shape. This past fall, when I was cleaning eavestroughs (while my father held the ladder), washing the fridge, cleaning out the hall closet and the pantry (while my partner held open garbage bags and took them outside to the big garbage cans as I wiped down shelving)… I realized this place needs a ton of work. It felt so overwhelming, and like I didn’t know where or how to start. Between training, travel, racing, and life, I didn’t stay on top of things as much as I wanted to this past fall, but I was still maintaining some momentum on this front. A little momentum is better than stagnation. And I liked the feeling.

Then January hit, and with it came a burst of productivity. Call it a New Year’s resolution, or turning over a new leaf. It was happening, seemingly without my input. I was getting stuff done in January. Like just getting sick of how things were and quietly making changes. Why not continue? I like how it’s gone… so start a whole new pattern? Make the goal open enough to be flexible, but concrete enough to see measurable results? Doesn’t research say something about making goals/resolutions/whatever this way?

And as a way to chronicle my journey – the successes and setbacks, the motivation and the lack thereof – why not share my journey in a monthly series of blog posts… because this blind lady’s getting sh*t done! And she’s sure she’s not the only one who wants to be productive on her own terms. She could also use some tips, tricks, and encouragement along the way – no person is an island, and all that.

So, come with me… I’ll be getting dusty, buying stock in vinegar, “cross-training” by lifting things, conceptualizing space, and quite possibly growing up and learning unexpected lessons along the way.

If All you Have is “Good Intentions”, Keep them

23 Saturday Nov 2019

Posted by in blindness

≈ 4 Comments

Tags

, , , , , , , ,

Listen to a recorded reading of this post!Download

I’m a visibly disabled person, navigating my life the best way I know how. I have hobbies, a job, a partner, a home… I buy groceries and commute and sometimes overspend and meet friends for coffee and despair about things that are going on in the world. Some things make me laugh, others make me cry, I avoid some activities and concepts at all costs because they terrify me.
In many ways, my life isn’t that different from anyone else’s.
But what’s frequently the only thing most people – particularly strangers – address about me?
I’m a visibly disabled person…
And I’m tired.
SO VERY TIRED.
It’s like this switch flips in the brains of many people that says “DIFFERENT!” and all propriety gets thrown out the window.
And if someone’s called on it – being politely and then firmly asked to stop asking personal questions, to stop grabbing and manipulating my body, reminding them that a particular action wouldn’t be welcomed if directed at them – I hear the words “But I just meant well” or “I just care” or “I didn’t know…”. As if this gives an automatic free pass.
Because DISABILITY!
And the armchair quarterbacking I’ve experienced on this issue – from people who weren’t there – “They talked to your companion because they aren’t comfortable with you” or “Disability brings out the compassion in people” or “people just want to connect with you on some level…”
NO!
I want to think that people have good intentions, but the reality is that violence against disabled people is far more prevalent than that experienced by non-disabled people. If I just go along, not making waves, thinking that people have good intentions, I am literally putting myself at greater risk (like the time three strangers tried to badger me into taking an elevator instead of the stairs, because they “would feel better” if I did so).
So that idea on its face needs to die, and right now.
But that’s not why I’m writing this.
I’m writing because intentions alone aren’t free passes. “Good intentions” aren’t enough anymore.
Because the impact of “good intentions” is cumulative. At the end of the day, underneath “good intentions” generally lies discomfort with disability, and a complex of superiority – that the non-disabled person is more informed about the world, more entitled to invasion of personal boundaries, and more knowledgeable about the disability experience than a disabled person.
NO!
Someone else’s “good intentions” means that they can walk away from an experience with a disabled person and go about their day. They can pat themselves on the back for doing a “good deed” (which, for the record, is SUPER condescending, and that thought also needs to die); they can walk away annoyed or hurt because their offer of help was declined because the disabled person didn’t need help at all… or they can walk away defensive after being called out because their “offer” of help or interaction crossed physical or emotional boundaries that are generally accepted as universal (except DISABILITY, so rules don’t apply).
But they can walk away and tell their partner about that ungrateful person they reached out to and were told they weren’t needed – or weren’t needed in the way they thought they should be. They can lump all disabled people together because of one interaction with that wheelchair user who asked them to stop pushing their wheelchair, or that blind person who told them they really didn’t want to discuss what made them go blind… That interaction took 30 seconds out of their day and they can move on.
But I can’t.
Because ONE person’s “good intentions” affect that one person for 30 seconds, or maybe a bit longer if they’re self-aware enough to understand their impact and actually make an effort to do better (this is rare, but this does happen).
But I can’t move on from the impact of one person’s “good intentions” because there’s another person’s “good intentions” right around the corner. I struggle to accept true compliments anymore because I receive so many that are based on low expectations of me. I have to forcefully deflect personal questions about my disability itself because politeness rarely works. I have to make a choice between drawing more attention to myself or shutting up and getting along when I’m physically grabbed and directed, when the person doing the grabbing was never given consent to do so.
One person’s good intentions impact them and me. Another person’s good intentions impact them and me. A third person’s good intentions impact them and me.

Impact is more important than intent. One can intend well and still have a harmful impact. And I’m impacted over and over and over and over and over and over and over again.
It’s never one person’s action alone, but the cumulative impact that has me – and others – so tired.
And every single person tells me they have “good intentions.”
Those aren’t enough. If that’s all you’ve got, skip them. Good intentions mean nothing when they come from a place of entitlement and superiority.
Do you really mean well, or is it that you want to feel better about yourself?
If you really mean well, take a split second and actually think about the impact of your comments or actions. Would you appreciate the comment or question if directed at you? Would you like to be physically grabbed, or would you prefer to have autonomy over your body? Would you like to spend the rest of your life talking about one personal topic, or would you prefer to talk about sports or the weather or local politics or…? I truly believe that a split second of reflection could have immeasurable positive impact on my experience and – by extension – yours.
And if you just want the warm fuzzies?
Move along… You don’t mean well at all.

“You’re doing WHAT in this weather?”: Digging Deep for the Hypo Half

21 Thursday Feb 2019

Posted by in blindness

≈ 4 Comments

Tags

, , , , ,

Click here to listen to a reading of this postDownload

Five months ago, I ran my first half-marathon. On a whim, I decided to see what races were going on while I was traveling on a journey that would change my life. I paid for my race fees, then crossed my fingers that I would have a guide runner on race day and a bus ticket to get there. My guide runner materialized months before I bought my ticket.
That race had perfect weather, with sunny skies and a light breeze and not too much heat. Even though my training program went completely sideways due to my guide dog’s emergency surgery – and later the thick smoke from wildfires that blanketed Edmonton for weeks – I’ll never forget it, and never regret it.
No sooner did I write the words “I’m never doing this again” than I started looking for my next half-marathon. Less than a week after arriving home, I signed up for what Edmonton Runners call the Hypo Half. It’s a half-marathon, run in February, in Edmonton – where temperatures can range from -40 to something above freezing… and you never know what you’re going to get.

I had no idea.

Spring and summer running are relatively easy. You get motivated by the opportunity to spend time outside, enjoying the neighborhood or trails or wherever brings you running zen. I knew winter running would challenge me in the motivation department – it’s cold and dark and sometimes snowy and gross. So I signed up with a training program through the Running Room, and started running with them three times a week. Over the course of the next four months, magical things happened. I found my space with a group of people who never once made me have to adapt to how they did things. There was always someone running with me, because you always run in pairs in the winter. Rick, our instructor, was always up to provide fascinating information (who needs Google with a Rick around?) or trying to talk all the runners into sticking around for a post-run coffee. Ed, who would later guide me and Jenny on race day, often joined me for coffee and was generous with his time, fuel, and date bites on long runs. I don’t think I had a single inappropriate question asked of me (the first person who asked anything about my vision promptly ran into a pole). The super fast runners still cheered for those of us who brought up the rear. Anyone who’s rarely had to insert their way into a given space may not understand what it feels like, this instant knowing you belong somewhere. And I was lucky enough to just fall into it.

Over the next four months, training was HARD. We ran on icy sidewalks, down hills that required traction devices on our shoes, in the cold and snow and wind, through three inches of snow that felt like running through sand. More than once I wondered why I was doing this – sometimes, the shocked response to my running in winter was enough to make me smile and keep going. We ran fast, or we plodded along. I mixed and matched my winter clothes, and had more than one fellow runner leave gloves in his car for me because I finished most of my runs without them. I learned more than the importance of good form or nutrition, I learned a few things about life and about myself. At low emotional moments, I discovered the somewhat magical healing properties of running the 109th Street bridge. And I had to really learn that staying upright and uninjured was better than logging the speed and mileage (because kilometerage isn’t a word) that my training plan demanded. This was a whole season of my life where the universe was trying to tell me to just be OK with just being.

And then, the first Hypo Halfers ran their race in early February. It was -30 Celsius, with the windchill making it 10 degrees colder. One of them gave us late Hypo halfers a pep talk – what worked, what didn’t – and I thought I was ready…

And then, February 17, 2019. It was just like any other Sunday morning. My alarm went off at the same time it does every Sunday. I drank my coffee, ate my bagel and eggs (after spending the previous five days eating more than two teenage boys could pack away), and got myself ready to run. Ed, my guide and friend, picked me up at the same time he has every Sunday morning for months. It could’ve been any other Sunday… except that day I held a race bib and a couple of obnoxious safety pins. The temperature was a relatively balmy -18 Celsius. “Not too bad,” as Ed wrote on Facebook before we went outside to wait by the start line.

Ed, Jenny and I found a few of our other runners, we wished each other well, and we started running. There’s something magical about the cadence of multiple pairs of feet – the rhythm in the light dusting of snow – that I can’t adequately put in to words. it finally felt real – we were really running! After several kilometers, it just felt like Ed and Jenny and I were alone on the course. And still runners – some we knew and some we didn’t – and volunteers cheered us on. Our speed was flawless, and I felt like I could take on the whole race… until 12 kilometers in. I didn’t wanna do this any more. I slogged through four kilometers of mental mud, swore at Ed when he “tried to be encouraging” by helpfully reminding me we’re 17 weeks out from a full marathon, and pushed… and pushed… and PUSHED. Finally, I got a second wind, and found my motivation – two of our runners were running with injuries; they wanted to run this race so much that they didn’t care if they had to crawl that finish line. I ran those last three kilometers for them, thinking of their grit and determination, and finding some of my own. When we crossed the finish line – 2:28:22 after crossing the start – I felt proud and tired and ready to eat! Jenny just felt tired, but looked REALLY cute with her own finisher’s medal.

 

The brunch is one of the biggest draws of the Hypo Half in Edmonton – that and winter running badass points – and it didn’t disappoint. I stuffed myself on bacon and fruit and potatoes while Jenny snoozed contentedly under the table. Many of our running crew came by to congratulate and commiserate, to high-5 and to compare notes, to laugh at the error in my chipped time, to ask the question we’ve been asking for weeks – “What’s next for you?” Some of us are training for another Half, others are preparing for a full, and some – like Ed and I – are straddling both worlds because of the dates of our next races. But I couldn’t think about a full marathon – I just had to soak in the successes of that morning, and all the people who helped to get me there.

 

It’s been four days since that race. I’m a little stiff and sore, but ready to get back onto the road to log the distances that will lead me to another goal: my first full marathon! This journey will be unlike anything I’ve done before, and yet I know some familiar faces – some of my people – will still be with me, training and cheering and dreaming their own dreams, and helping to make my own possible.

The Day the Music Died

31 Thursday Jan 2019

Posted by in blindness

≈ 2 Comments

Tags

, ,

Click here to listen to a reading of this postDownload

I used to say that music was in my blood…

Until it bled me dry.

 

I used to sing. A lot. All the time. In the car, at home, with friends… I’d literally get together with people – those I knew and those I didn’t – to do nothing but sing. I practiced singing – I had to work at it – when I was alone, just so I could perform better. Whether or not I could hit the notes, I’d try and try and try again – probably to the dismay of my long-suffering parents, particularly when I couldn’t quite reach the high notes. I fronted bands, sang karaoke, provided background vocals. From the time I was about twelve, you’d find me gathered around the piano at summer camp with my friends, or walking down whatever hallway singing songs I liked – and every now and then songs I couldn’t stand but couldn’t get out of my head. During free periods in high school – when I didn’t have homework to do – I’d sit on a bench in the hallways and play my guitar, because of course it came with me to school even on days I didn’t have guitar class. I wrote music, for those times when merely speaking words wasn’t enough and I had to express my fear, faith, anger, pain, hope, or what I thought was love. When I was sixteen, I taught myself the guitar, scraping raw the fingers on my left hand and making it impossible to read braille for months. I fell back in love with the piano in Bible college because there were too many guitarists and no one else would play the piano. Between classes at that Bible college, I’d sneak into the chapel for a few moments of solace, where the music from that old out-of-tune upright would mingle with my voice, echoing slightly in the empty room. I’m glad I didn’t know until years later that people would sometimes sneak in and listen. I would have stopped playing if I’d known.

 

I used to say music was in my blood…

Until it bled me dry.

 

I remember the exact moment when I made the decision to step back from performing – even though I didn’t realize that decision would remain steadfast for over a decade. I was standing in a church in La Crete, Alberta, singing a song while combating a terrible cold. My voice was hoarse, and I was thrilled that no one I knew – beyond my Bible school classmates – could hear me like this (and maybe not even them). I remember thinking “No one knows me beyond the fact that I can sing and play… I can’t do this anymore.”

 

Over the next few months – that eventually turned into nearly twelve years – I jammed a few times with classmates, played alone on that old upright in the chapel, but I don’t remember singing and playing publicly much after that. I did karaoke with friends once or twice over the years, but that felt awkward to me. I jammed a handful of times with friends on the piano I insisted Ben and I buy when we bought our house, but the house was never filled with music the way we hoped it would be. I played a piano here and there, wrote a song a couple people I trusted heard and liked (eight years after that church service in La Crete), and made some noncommittal noises about joining a friend any time he asked or cajoled or badgered me to go for a jam (he always asked again)… But I was done, burned out, had nothing… Music had let me down. It had taken me in and spit me out and I wasn’t ready for the merry-go-round again.

 

I used to say that music was in my blood…

Until it bled me dry.

 

I haven’t written a complete song in over three years. And before that, I hadn’t written one in seven. It’s not that I had nothing to say – in fact, I’ve had a lot to say – but I feared what I would say, what I would have to acknowledge to myself if no one else. And I felt that I could never find the time and space to explore new musical frontiers without feeling the unintentional pressure to perform by those around me. That’s another reason I have been extremely reluctant to sing publicly. My vocal “gift” is not raw talent. I literally had to teach myself to sing. When I was young, I loved to sing but couldn’t carry a tune in a bucket. When I started buying tapes and CDs, I’d play them for hours, pitching my voice to match the artists – first country, then pop/rock – and somehow, magically, I could sort of sing. And people responded to that. I soaked up the attention, and in many ways it was a great thing.

 

Until it wasn’t.

 

Until I became known as the girl who sang with conviction and passion (if not technical perfection) and could maybe accompany you or front your band. And then it was an obligation, not a joy. I’ve silenced my voice for over a decade, because I knew on some intrinsic level that if I didn’t, I’d spend years playing and singing songs I didn’t feel, or writing songs I could perform for no one but myself, or writing “performable” songs that would steal a piece of my soul. And I’d hate it. That’s why I have been extremely reluctant to sing in churches or karaoke bars, to play at functions, or even to write. Because one such event always always leads to another.

 

Over Christmas, I visited my parents. There’s an annual tradition my Dad attends – a Christmas morning brunch with a bunch of folks who may or may not have somewhere to go for the holiday. After we’d had our fill of food and coffee, we all headed in to the living room for some caroling. My Dad performs a solo every year – Six White Boomers – and his friend with the guitar didn’t know the song. I offered to get her a key to play in, and somehow – with shaking hands and an unpracticed ear – ended up accompanying Dad on the whole song. No one made a big deal when I handed the guitar back, leaned back on the couch, and sang along with the others on the next song.

 

I loved it.

 

Because it wasn’t about me.

 

I was part of a collective, not a show monkey being paraded in front of a group of people. And that one experience told me that it was time to steady my hands and hold the music again. It paved the way for a solo New Year’s Eve – just me and a guitar and a seriously out-of-tune upright – opened the door to bleeding fingertips and aching wrists and a voice I didn’t realize I had.

 

Even so, after so much reflection and work and a few tears, I started to wonder
if music was really in my blood, or if I was just kidding myself. Of course my skills are rusty. Of course I need to practice. It’s been so long since I sat down and wrote that I forgot the process (for the record, there is no “process” beyond sitting and writing). Of course I have things I want to say… But does music coarse through my veins? Do I need it like my morning coffee, or a hard run, or a good night’s sleep?

 

Absolutely, yes!

 

I used to say that music was in my blood…

 

And I’ll start saying it again.

 

Because it is.

An Open Letter to Our Cheering Squad: Thank You Isn’t Enough

05 Sunday Aug 2018

Posted by in Uncategorized

≈ 7 Comments

Tags

, , , , ,

A week ago today, two friends came over to our house, bearing a massive watermelon. Sure, it was a beautiful summer day, perfect for watermelon, but the summer treat wasn’t for me. I hadn’t asked them to come, but they knew that I couldn’t leave, and had no way of obtaining one for several hours. While the watermelon was being sliced and diced, I was trying everything I could think of to get Jenny, my beloved guide dog, to eat it… to eat anything, really. Each time I showed her the food, Jenny turned and walked in the opposite direction – as she had had every time she’d been shown food the past twenty-four hours. The closest we could get her to the watermelon was to mash it into her water bowl… and even then she drank a bit and walked away.
My friends hugged me as I cried worried tears, telling me Jenny would be OK, offering words of comfort and plausible reasons for why Jenny might be avoiding food after 36 hours of throwing up.
But when Jenny wouldn’t get up and say hi to Ben when he returned home, I knew we were in trouble. Maybe it was a reaction to a medication her vet prescribed, but even so, Jenny wasn’t eating, and this couldn’t continue indefinitely.
A week ago today, Ben and I drove to the north Edmonton Emergency Veterinary clinic with a brave but lethargic Jenny. The vet recommended hospitalization. One of the hardest things I’ve ever done was to walk out the doors of the clinic as a vet tech took Jenny into the back to put her on IV fluids and figure out what was wrong.
Within minutes of Ben posting the newest development on facebook, our phones went crazy. Friends and family called, texted, tweeted, facebooked, emailed, cheered as certain ailments were ruled out. On Monday morning, my colleagues asked where Jenny was, and comforted me as I cried and told them she was still in the hospital. Our friends lit a Coleman lantern the first night she was gone, and promised they’d light it each night she was away until she came home.

For Jenny to Find her Way

 

By mid-day Monday, Jenny was no longer dehydrated, but she was still lethargic, and still not eating on her own. We agreed to an ultrasound which showed an unclear image of a foreign object in her digestive tract. They recommended surgery that night, and I knew I wouldn’t sleep until I got the results of the operation. For the second night in a row, our friends lit the Coleman lantern, and posted about Jenny on Facebook. People I knew – and people I didn’t – were cheering for Jenny, sending prayers, offering comfort. Some friends even stayed up late playing dice games online with me when I was too keyed up to sleep. When the call came that Jenny’s surgery was a success – and they were able to remove the foreign object (a nectarine pit, as it turned out) with less intrusion than they expected – I could see in my mind all the names of all the people who had been with us on this journey. The names and faces and stories seemed to have no end – those who had been where we were, those whose beloved animals never came back, those who came home happy and healthy as though nothing had happened. I was overwhelmed by how powerful even small actions and words could be.

 

The emergency vet’s office staff were all amazing, answering my frequently “checking up!” calls with respect and compassion, giving us as much information as they could, even if it wasn’t encouraging. When we first admitted her, they gave us room and space to spend some time alone with our beloved Jenny, and repeated this compassionate act when we agreed to admit her for surgery. As soon as they could, they called with major developments, cracking jokes about Jenny being a cheap drunk on the pain killers. Twelve hours post-op, she still wasn’t eating, but they were encouraged that she was resting comfortably and communicating that she wanted to go outside. Not 45 minutes later, my phone rang three times from the clinic, and my heart stopped (oh, no, did she get sick again?), but the news was good – JENNY WAS EATING! Six hours after that happy phone call, we got some other amazing news: Jenny could come home!

When we came to pick her up, we got a full update – Jenny was a princess dog (“um, no canned food, please!”) and was a huge hit with the staff. When they brought her out, her head enclosed in a Cone of Shame, she wiggled and waggled and was completely different from the lethargic and stoic guide dog that had come in 48 hours earlier.

 

There was no way Jenny could guide – and I couldn’t ask her to – but Ben and I still had to work this week. We couldn’t leave her alone, and we couldn’t take time off ourselves. While Jenny recovered from her surgery – stoned out of her mind on painkillers – we had offers of “Jenny sitters”, offers made without us even having to ask. Ben’s mom came and kept her company (and snuggled her on the couch) on Wednesday and Friday, and our friends Keith and Donna – bearers of watermelons and lighters of Coleman lanterns – took her on Thursday for a little field trip to their house. I’ve thanked them all for giving her meds, feeding her smaller meals as appropriate, sending me ecstatic messages when Jenny had her first post-op poop… but I don’t have any other words to thank them – or anyone else – for lifting us up in such practical ways.

 

For those who have been with us on this crazy journey – offering words of comfort and hope, giving me space, providing medical treatment, offering practical assistance, sharing our story, cheering us on…

Thank you isn’t enough.

I used to think words were cheap.

You’ve proven me wrong.

Words have power.

Your words have power.

Your words and lanterns and hands and time and prayers… they made all the difference this week.

Thank you.

Thank you.

Thank you.

The Intrepid Journey 2018: One Month to Go

31 Tuesday Jul 2018

Posted by in The Intrepid Journey 2018

≈ 1 Comment

Tags

, , ,

I cannot believe it!

I can count down the days – not weeks, not months, but days – until I take off on The Intrepid Journey 2018! 31 days from today, from this hour, I will be leaving on a jet plane, headed south and west to whatever awaits me.

What’s happened since my last post? Not much… and a lot.

The bus situation has primarily straightened itself out, and I have all my accommodations booked. I just have to book my flight home, and then I’m good to go!

Half-marathon training has been going well…

But a serious summer cold set me back a week, and we had to send Jenny to the emergency vet this past weekend; she’s still there now, having undergone surgery on Monday night. Needless to say, we’re both a little worse for wear right now. My training schedule is shot out of the water. I need to give Jenny and I time to rest and recover, and adjust my race-pace expectations, but it looks like both Jenny and I can be in some kind of running form on race day (47 days from now).

It FINALLY feels real!

I’ve always liked to plan stuff – I should’ve gone to travel agent school – and so planning the logistics has been both frustrating and invigorating. Seeing it all come together, fall apart, and come together again has been amazing, and it’s enabled me to do a lot of things – like run a half-marathon – that I never thought possible.

If you’d like to support this trip and the lessons I learn along the way, please consider donating here, or buy me a coffee… because there’s no such thing as too much coffee!

With a Little Help from my Friends

09 Saturday Jun 2018

Posted by in Uncategorized

≈ 2 Comments

Tags

, , , ,

A few days ago, I saw a video posted online of a guide dog user being denied entry to a well-known New York club. Not only did their friends stand in the gap for them, trying to advocate and to explain that their friend had a right to be there, but also physically going into the club and making the manager address the issue.

At the time, I commented about the true sense of friendship between these three.
“And her friends refused to take it lying down. They refused to allow the manager to ignore the issue, they made him flat-out say that he didn’t care about the law and would discriminate anyway.
I want allies like this.
Allies who will stand in the gap when I say with a sigh that feels like a scream – because of someone’s actions TOWARD ME – “I’m sorry for ruining your night.””
And as I thought about it, I realized that, in fact, I do have friends and allies like this.

Just today, I discovered a post I wrote that puts into words what true friends are.
“Good friends are those who will talk to you about anything, talk to you about nothing, listen to you, cry with you, laugh with you, let you forget your troubles for awhile, tell you the truth even if you don’t want to hear it, visit you in the hospital, stand in line at the pharmacy with you, dance with you, laugh at your bad jokes, drive you home in a snowstorm, encourage you to try new things, accept you as you are.
I truly have great friends.”

 

A shoulder to Lean On

 

A few months ago, I went through a pretty unpleasant experience. In many ways, I felt like my brain and my body had betrayed me in ways they never had before, and I struggled to make sense of it all. From some pretty surprising corners, both new and old friends reached out and listened as I sorted through my feelings and my reactions to what happened. Their attentiveness and occasional “checking in!”s made a ton of difference at a time where almost nothing in my life made sense. When, after a few weeks, I was still struggling, those same friends cheered me on as I reached out for professional assistance. They made that time in my life – which was the beginning of a journey of serious and life-changing self-discovery – a lot easier to confront.

And, sometimes, friends do not have any idea that they’ve been a lifeline. When my employer sent out the weekly newsletter featuring a marathon runner with a disability, I reached out to her and said hello. We talked about what we had in common – disability, running, dislike of Nicholas Sparks books – for most of that day. What she doesn’t know is how talking about those things helped keep me together on a day where I was emotionally struggling, probably harder than I ever have. It causes me to stop and wonder… how often do we support our friends without even realizing it? In those moments where the struggle is not so obvious, how often do we unknowingly step into that space, lend a hand, and lift our friend up?

 

Ch-ch-ch-changes

 

I’ve had many groups of friends over the course of my life. Some friendships formed through proximity (school, work), others through common interests, and others through shared beliefs or lived experiences. Some have remained generally constant, while others have ebbed and flowed over the years. When life has taken us different directions, some have quietly faded into the background while a painful few have been quickly cut off at the roots. As I’m going through a pretty prolonged and complicated period of self-discovery, I’m fascinated at how some friends and I are growing closer, and viewing life through similar lenses – sometimes after long absences from each other’s lives – while others who were much closer to me when I thought, talked, and believed a certain way have faded into the background. For the most part, I really do think there’s a lot of truth to that quote about friends being for a reason, a season, or a lifetime. Sometimes, it’s painful and fascinating to learn which friends are in your life for what period of time.

 

Hands and Feet

 

I’m just going to come out and say it. Sometimes, adulting sucks. There’s big stuff – like moving, starting a family, getting a new job, experiencing illness or loss… you get the idea. Friends are regularly present for such events – and if they can’t be, their absence adds pain (sometimes more pain) to those big life experiences.

But friends show up in the little ways, too. It’s boring to buy groceries and go to the post office and clean your house. Sometimes, though, you can reconnect with friends and neighbors just by doing those adult things. Just last week, Ben and I ran into a neighbor and friend in the produce store we’ve been shopping at for years. We chatted and reconnected just while waiting in line. Sometimes, a friend who works in my office building will ask me if I’m going to a certain area she’s going anyway – sometimes I am – and we end up shopping or mailing packages and chatting about life. Another will join me on a run – seeming to pick those days where I REALLY don’t wanna! – and keep pushing for me to work hard and do well.

 

“I Want What’s Best for You… but I Love you As you Are”

 

I am truly blessed to have some of the most honest friends in the world. Sometimes that means telling me some uncomfortable truths about myself – especially if I ask directly. Sometimes I get told when I’m being too demanding; other times I’m reminded that I’m overloading a friend with my own emotional baggage. As painful as these conversations are sometimes, I’m glad that friends love me enough to tell me these things before they fester into resentment and anger.

And while it’s so important for friends to love us for who we are – and I am blessed to have friends who love me for me – they also cheer us on when we expand our horizons. When I first told one friend that I was thinking about signing up for a half-marathon on my upcoming trip, the first thing she said was “do it!” Sometimes you need a friend to talk you through a situation – finding all the angles, asking questions for you to consider – and other times you need a friend to just give you the push to go for it. I’m blessed to have friends who can – and do – do both.

 

I Could Go On… but What About You?

 

There are so many other things that make good friends, but these have affected me most deeply lately. If you recognize yourself in this post, thanks for being my friend; if you don’t, this in no way diminishes my love for you or how much I value our friendship.

What about you? What makes a good friend? Have you had an experience where a friend appeared from an unexpected place, or supported you without even knowing it?

Tell me about it in the comments below!

The Intrepid Journey 2018: Opportunity Knocks

16 Monday Apr 2018

Posted by in The Intrepid Journey 2018

≈ Leave a comment

Tags

, , , , , , , , ,

I hate the saying “everything Happens for a Reason.”

 

Sometimes, there is no reason.

 

But, in many things, I find myself embracing new opportunities where once I had seen closed doors.

 

Does opportunity knock, or do we make our own?

 

Are both true?

 

I’ve made a decision since last I wrote: I’m skipping Missoula. Sure, I booked a bus ticket to Missoula (and not using it will leave me out $30), but other bus route cancellations have made visiting there impractical. I’m spending an extra day and night in Flathead County, making my way to Great Falls by train and bus a couple days earlier than originally planned, which leaves me some time to spend in Butte! I’ve heard both amazing things about Butte, and have been told by other people to skip it. But since I was able to easily find accommodations in Butte (compared to the hostile reception by multiple Missoulian AirBNB hosts), and there’s a ton of historical stuff within walking distance, I figure I can’t REALLY go wrong. I’ve also been able to locate places to stay in Bozeman and Billings, which now completes the accommodation search. YAY!

 

Transportation is still a concern (though research has told me that there may be schedule changes later this month); and here I thought that would be the easy part of trip planning!

 

WRONG!

 

But… opportunities.

 

Wonderful opportunities.

 

I’ve been toying with the idea of running a half-marathon for the past couple years, and I happened to Google what races might be running in Montana while I’m in the State.

 

And I found one.

 

I have signed up for the Montana Marathon in Billings! It’s a day earlier than I planned to get there, but there’s a half-marathon! I’m tired of saying that someday I might run a half-marathon… I am going to run a half-marathon five months from today! I’m still working out some logistics – when I will get into town, who will be my guide runner, and how I plan to train both at home and away – but this is honestly the most right-feeling thing about this trip. It’s yet another way I will grow and stretch and push myself and meet more people… I couldn’t be happier!

 

Without the canceling of bus routes and shuffling my itinerary and putting it all back together again, this wouldn’t be possible.

 

So I’ll be running mile after mile, doing squats and planks and stair-climbs, thanking Opportunity for knocking when I was in a position to answer.

 

Please consider supporting this trip and help making it the best it can be!

“You’re SO brave!”

25 Saturday Nov 2017

Posted by in blindness

≈ 5 Comments

Tags

, , , , , , , , ,

“You are SO brave!”
I hear this phrase a lot. Maybe not as much as I used to, but I do hear it, usually relating to the fact that I’m a blind person who works, has a thriving jewelry-making business, and/or gets out of bed in the morning. I don’t think of myself as particularly brave for doing any of these things, and yet many people bestow this attribute on me.
But there was a time in my life where I heard that phrase – “You’re SO Brave!” – a lot more frequently. I hated to hear it, because I thought it was inaccurate, but looking back, maybe not so much.
This morning, I got an email wishing me a happy 13 years of patronage at the Edmonton Public Library.
THIRTEEN YEARS!
It seems like so very long ago, when I packed up everything I owned, effectively transplanting enough furniture to fill an entire apartment, and sinking my entire life savings into rent for my apartment’s six-month lease. I did this, moving to a city where I knew a grand total of one person – not well – with no job, no work experience, and nothing but a hope and a prayer that I would get one in the near future.
Thirteen years ago – almost to the day – my friends and I stayed up until 2:00 in the morning, eating junk food and drinking pop (we were straight-laced kids) and playing endless rounds of card games. I remember thinking it was pointless to try and get any sleep, since I had a flight to catch at some horribly early hour. Thirteen years ago – almost to the day – I slept through the entire flight, and my mom had to wake me up so I could get off the plane. My furniture hadn’t arrived at my apartment yet, so Mom and I slept on the floor in sleeping bags and I tried hard not to kick the lamp we bought and set on the floor to provide a little light into my apartment’s dark corners. I had the power turned on, but before I contacted phone and Internet providers, Mom and I took the train to the downtown branch of the Edmonton Public Library. I’m such a bookworm that I had a library card before I had phone, Internet, food, and more clothes than those that fit into my wobbly rolling suitcase.
My furniture took over a week to arrive, so Mom left me alone in that apartment for five or six days, where I slept in the sleeping bag on my living room floor until she arrived again on the same day my furniture appeared.
None of this made me feel particularly brave, and yet, over and over and over again, I heard it. “You’re so brave!”
The one person I knew in Edmonton took me under their wing. I was welcomed into their home and community for holidays, gatherings and a Christmas production where everything went horribly wrong. When they would introduce me as their “friend from Vancouver,” who moved to Edmonton for job prospects, and was building a life here, I heard it.
“You’re so brave.”
Months went by where I lived on very little. My parents helped me out when they could, but I lived on a lot of noodles and the kindness of neighbors and newfound friends – some of whom would invite me over for dinner or bring me oranges from their grocery shopping trip. The first job I got was a part-time gig, but it enabled me to renew my apartment’s lease for a year, spring for the occasional pizza, and explore other opportunities (some of which fell flat on their face). Some months I barely made rent – one memorable month I supplemented my income by making balloon animals at a downtown Canada Day festivity. I paid my rent at 10:00 PM on July 1 and lived on heaven-knows-what until I got myself another job later in the month.
Many friends and family back home – and new acquaintances and friends in Edmonton – told me I was so brave for doing all this, but for me it was a matter of emotional survival. The more I heard it – “You’re SO brave!” – the more I wanted to scream. To me, it was about simple mathematics: cheap rent plus job opportunities equals hope. Living at home minus career opportunities equals despair. To me, at age twenty, bravery had nothing to do with anything; to me, I couldn’t just keep doing the same thing over and over and over again an expect different results, so I made a change.
A big change.
A brave change.
Over the last thirteen years, I’ve borrowed hundreds – no, thousands – of books in various formats from the library. I’ve worked an amazing amount of jobs and gone through stretches of unemployment. I’ve married, bought a home, built a life.
And you know what?
I was brave.
But I’m glad I didn’t see myself that way all those years ago. Because if I had, I might have talked myself out of it in the first place. Or held myself up as some inspirational figure. Or denied myself some opportunities because they were “beneath me.”
To me, all those years ago, I did what needed to be done, and in hindsight, I did something brave.
Even now, as I’ve explored new career paths, begun planning an amazing trip, I don’t see myself as brave. Maybe that’s the point. Maybe in the moment, we shouldn’t see our spontaneous or daring actions as “brave.” Maybe, the next time someone comes up to me and tells me I’m brave for getting out there and living my life with blindness, I’ll remember this time in my life, smile at them, and say thank you.
Because they would not be entirely wrong.

What about you? What has made you brave? What has stopped you from doing something possibly scary but that you know will make you grow? What will light that spark in you?

Living in the Middle of the Road

18 Saturday Nov 2017

Posted by in blindness

≈ 2 Comments

Tags

, , , , , , ,

It’s funny, the patterns you see, when looking back. Almost exactly two years ago, I wrote a blog post about how not everything is a fight. Even though they were absolutely right on this count, the person who inspired that post had their own agenda, their own reasons to grind me down. In response to their comments – some that were accurate and some that were cruel – I tried to buckle down, to keep quiet, to not speak out about anything; in effect, I tried to become a quiet little mouse who never uttered a word as it came to perceptions of my blindness. I lost part of myself in the process. I believed most of what this person said – much of it to my detriment – and it took me years to realize that they could be right about one thing and yet still be very very wrong about everything else.

Somewhere along the way, I’ve met some amazing people who’ve helped me become a strong and forceful disabilities advocate. They are compelling and fearless and take no prisoners. I owe a great deal to them, for their willingness to stand up for people with a wide variety of disabilities – not just the unique challenges and triumphs their own disability(ies) present. They’ve made me feel welcome, and since then have encouraged me to share my perspective and kindly corrected me when I made mistakes that hurt them.
And yet, in between those two extremes, is the middle of the road. In many ways, I’ve found myself swerving from one extreme to the other, using bravado and force to overcompensate for the pain of passivity, of having my face shoved into the shoulder of the road.
Recently – and it’s not the first time – a loved one told me that I shouldn’t be upset when someone is surprised that I hold the job I do, and chooses to express this shock with sickly-sweet tones that one usually only hears directed at very young children. This was on top of a bunch of other little things that made the whole day just go sideways, even if nothing itself was earth-shakingly bad. To be honest, I’m still reeling from the comment itself, and the later understanding that I’ve been overloading a loved one with too-frequent complaints about how people respond to my blindness. They have the luxury to decide whether or not to hear about it; but it is such an integral and frequent part of my day that I don’t think twice about sharing it. In the moment of impact, it just didn’t feel fair.

But is it really unfair when I am expecting them to help carry my own burden for me when they’re not willing or able to do so on a regular basis? If I expect understanding from others, should I not offer it in return?

I chose to take that hurtful comment and seek out some self-reflection with the help of trusted friends. As of right now, however, I have no easy answers.
Have I been angry?

Yes.

Have I had cause to be angry?

Yes.

Do I expect others to be angry on my behalf?

If I’m honest, yes. Because I highly doubt they’d put up and shut up about being denied opportunities, infantilized, bodily manipulated, and underestimated on a very frequent basis.

Is that reasonable?

I don’t know.

Is it reasonable for friends and family to not want to hear about it all anymore?

I don’t know. I can’t choose to ignore it all, but I can choose when and with whom I open up these dialogues. It is my responsibility to be considerate and not over-burden loved ones with my own emotional baggage, no matter how reasonable and justified the baggage is. But it is also theirs to remember that no one likes their bruised feelings and interpretation of events dismissed out of hand, especially when they’re releasing some pent-up tension, as we all do.

Is it understandable for frustrations to boil over into a lack of empathy, cruelty and harsh words?

Yes, on both sides of the issue.

So what does this mean for me?

I don’t know.

 

My blog May look different in the coming weeks or months. Maybe I will take a break. Maybe I’ll do something radical and remove myself from disability spaces. Maybe I’ll do none of these things. Maybe I’ll do all of them.

I doubt I will ever be content sitting on the sidelines long-term, because allowing others to speak for me will limit my own opportunities, and those for the people who come behind me. But I can’t keep swerving between hostile aggression and docile compliance, because neither accomplishes anything. And I can’t keep coasting through, keeping my head down, allowing my presence alone to be an example, because where I am and what I do are only part of my story.

So I’m going back to the proverbial “driver’s manual”, to figure out the best advocacy “vehicle” for myself and my loved ones. Maybe I change what I say and how I say it. Maybe I choose my battles more carefully. Maybe I emotionally check in with my friends and family to see if they’re in a space to carry a particular burden with me. Maybe I take some time out to just exist, particularly on days where everything just goes sideways and I wouldn’t respond objectively anyway. Maybe I have all the tools I need, but I need to teach myself how best to use them. I’m not doing anything drastic, nor will I suddenly become a door mat.

But I am so very tired, on all fronts.

And maybe for now – on this leg of my journey – it’s time for someone else to take the wheel for me.