I remember the first time I worried I might not ever be okay.
I was fourteenish, embroiled in a toxic not-quite-relationship with an older boy who’d discovered the exquisite pleasure of exploiting my insecurities. I had burgeoning confidence in my potential; I could picture a successful, if difficult, road ahead. But secure, relatively intelligent young girls who are quite sure they’re doing all right aren’t any fun to manipulate, so he began to poke holes in my bright future.
“You really need to be more independent,” was the regular refrain, delivered with tender cruelty I was meant to mistake for tough love.
“It’s a hard world out there, dear,” and “you’ll struggle for sure,” and “good thing I’m here to help.”
I got miffed, all the time. I even pushed back some, when courage was close at hand. On some level, I understood these criticisms were as rich as turtle cheesecake coming from a person who had accomplished less in his 18 years than I had in the four years that separated us. I had a lot to learn, in the blindness skills department most of all, but I was competing at music festivals, getting excellent grades, and managing not one but two chronic conditions without much medical support. I was about as on track as any teenager I knew.
He, on the other hand, was perpetually angry, hopelessly off track, with an uncertain future and a penchant for blaming his disabilities for abusive outbursts and bouts of frightening possessiveness. If anything, I should have been the one clucking with concern, but much as I sensed the wrongness of it all, I let his doubt poison my faith. Faith is there when the odds aren’t favourable, and to be disabled in a harsh world is to live with unfavourable odds. And faith, more than skills and talents and support, has always been the engine of my success for that very reason. I’m convinced he knew that.
In my senior year of high school, that engine had all but stalled. I’d broken all contact with that toxic friend long before, and he had since died suddenly. He could no longer mail me packages I didn’t want, or threaten suicide if I didn’t play nicer, or use social media to stalk me, or email sanctimonious lectures about my tragic inability to take care of myself. But the damage was done. He had triggered a landslide of second-guessing that, helped along by myriad forces in my life, had buried me to the point where all I could do was dread everything – dread university, dread my first job, dread new cities and exciting adventures and fresh mistakes to run with. I still had so much to learn, and I was paralyzed, rather than energized, by all of it.
Depressing, amiright?
Fortunately for us all, this is a new-year-new-decade reflection post, and those have to have a happy ending and a hopeful outlook. Them’s the rules.
The past decade has presented a lot of pain and self-doubt, brought on in many cases by the doubt of others. The pressure to make something of myself—to ‘transcend’ blindness, chronic pain, mental illness, limited educational opportunities, the whole bit—sat smugly atop the self-defeating prophecy that I’d never do or be enough. What was the point in trying?
But it has also blessed me with plenty of people who had so much faith that they couldn’t conceive of me being anything other than enough, maybe more than enough. I’d make mistakes, sure, and fall flat on my face a few times given that stubborn streak running through me. Ultimately, though, I’d pick myself up and keep charging ahead, because that’s just who I am.
“Listen,” one friend said bracingly during one of my late-night fall-apart sessions, “you are going to screw things up sometimes, in the blindness department and in the general life department. You’ll put reds in with your whites and burn hell out of your dinner and at some point you’re going to get really lost in a new place, and all of that will suck.”
“Exactly!” I wailed, missing the point spectacularly.
“It’ll suck, but you’ll wake up the next day and realize that life keeps going. And you’ll discover after a while that trying stuff is messy and scary and you can’t be good at everything you touch. I was embarrassingly far into living on my own before I felt comfortable with my life skills. I survived. You’ll survive too, and then you’ll understand that when someone says ‘you’ll never make it,’ that’s not helping you. That’s not motivation. That’s not love.”
This come-to-Jesus moment came on the heels of another friend getting so sick of my constant self-flagellation that he nearly cried with sheer frustration.
“I swore to myself I wouldn’t sit here and watch you do this to yourself anymore. Seeing you beat the shit out of yourself all the time hurts me, and it’s not my idea of a good time. Cut it out.”
(Some of my friends sure knew how to bring the constructive tough love, wowsers.)
As many of you know, I did end up going to university and getting jobs and doing fine on my own. I learned most of the skills I’d need to do well in the world as a disabled person, as a writer, as a professional, as an aunt and mentor and wife. And at one of my lowest moments, total strangers would remind me that I’m not alone in my doubt and my despair, that if you’re running low on faith you can always borrow someone else’s.
This journey hasn’t been romantic, and I’m still learning to have faith in myself and ask for help when I need it. I’m still suppressing the reflex to put myself down, just so I don’t have to deal with fear and failure head on.
But here is the wonderful, indispensable lesson of the decade: now that I’ve allowed people to believe in me, now that I’ve let their faith rekindle mine, brave and beautiful things are happening.
I’m wide open to another ten years of failures, and to many more beautiful things.
friendship
Cooking My Way Toward Confidence
I’m not much of a cook. I’ll get that out of the way first and foremost. You’ll never catch me humblebragging about my culinary adventures, and my best recipes come from Google. I’m far better at googling than I will ever be at cooking. In fact, part of the reason I fell so immediately, intensely in love with my better half was that the man could cook, and I was in desperate need of a healthier relationship with food. Fiercely independent as I was, I was ready to let someone feed me, and he did so with relish.
I have a tower of excuses for my abysmal cooking abilities. I don’t have the time (I often do), or the spoons (I sometimes do), or the know-how (which I could probably learn if I applied myself, let’s be honest).
The real story is a lot less sympathetic. Simply put, cooking is scary for a blind person who lacks confidence during hands-on tasks, and I’m one of them. I’ll write you a set of speaking notes in less than an hour, for an event I’ve never heard of, on a topic I know nothing about. That’s juuust fine. But please don’t ask me to do anything with my hands other than write, play the piano, and carry your stuff.
“But Meagan,” you insist, “surely you’re overthinking this! It’s not that complicated.” (You’re right. Congratulations.) Special training is not strictly necessary, and the majority of blind cooks I know are at least partially self-taught. It’s tricky, but it’s not arcane.
And yet, the chronic diffidence persists, and it didn’t originate with me. For as long as I can remember, sighted people have been all too happy to enumerate the disasters that might befall me. Knives can’t wait to chop off those precious fingers that help me read and use my cane. Boiling hot liquids are just waiting to terrorize me with much spattering and spilling. Grease fires lurk around every corner, poised to consume unsuspecting paper towels. Measuring is messy. Preparing dishes without visual input is imprecise. Whatever I make probably won’t be perfect. (The horror!)
And so, being someone who fears messes almost as acutely as I fear failure, I stayed out of the kitchen unless compelled to do otherwise. The years I lived alone meant I subsisted on an insipid rotation of frozen dinners, canned soup, and snack foods that lacked nutritional value but quieted my hunger. Every now and again, when I wasn’t busy studying or writing papers in a feverish haze, I’d throw together a salad or heap a random assemblage of ingredients in my slow cooker and hope for the best. My standards were low and I was frequently too ill to eat at all, so this worked for me … for a while.
Once I started working full time and transitioning to “real” adulting, I began longing for more in nearly every facet of my life. I wanted to travel more, socialize more, and acquire the grownup skills I thought I ought to have picked up years ago. My student days were marked by severe migraines and appetite-killing pain, and I was mostly too ill to notice I was living a small, sad existence. Now that I was blossoming, really learning to thrive, I felt I should take the act of cooking more seriously—for my health, if for no other reason. And there they were, my faithful, time-worn excuses.
But this time, there was a new element: my afore-mentioned better half. He didn’t have a lot of time or energy, either, but when he did, he’d prepare delicious meals for me and, eventually, for our friends. Nothing made me prouder than a group of my loved ones sitting at our kitchen table, exclaiming over his prodigious talent. There was immense satisfaction in the act of nurturing people, of bringing them together through the medium of food. An ongoing source of suffering in my life has been the perception that I have nothing to offer. No one needs me, I can’t be counted upon, and I will never make others feel cared and provided for in the ways so many have done for me. It’s a common and heartbreaking reality of disability, which very few of us escape entirely.
But bearing witness to the magic my partner could call forth by simply whipping up a meal and inviting people to our table made me question those long-held assumptions about myself. Perhaps I really was capable of nourishing others as they had so often nourished me. Watching him at work filled me with such an expansive, buzzy feeling of well-being that I decided it was time for me to be brave and turn these one-man meals into a team effort. I wanted to do more than stand on the sidelines of his generosity—a generosity I shared but couldn’t easily express. I wanted to help make it happen.
I’m still a bad cook. (What’s that? You thought this would be a story of radical transformation? Triumph over adversity? Sorry, wrong blog.) I’m not sure that will change, though experience will help me hide it better. What I do have is patience, inspiration, and determination to improve. I also have a partner who appreciates every contribution I make, whether it’s researching recipes or taking care of the food prep he finds unendurably dull. He knows I have a long way to go before I’m satisfied with my skill level, but he is happy to celebrate the baby steps between where I am now and where I want to be. The pure, unbridled joy he takes in those baby steps gives me the space and freedom to celebrate them, too.
With every meal we coordinate together, with every recipe we choose and every cozy conversation that plays out over our cutting boards, I feel my confidence building and, more and more now, a growing closeness not only with the partner I cook with, but the people I cook for. Showing love in words has always been easy, but showing that love with my hands was always an epic struggle. Now, with practice, I am learning to embrace the work of my clumsy, imperfect hands as a pathway to enhanced self-worth and a better relationship—with myself, my partner, and my loved ones.
The cherry on top of the sundae? I haven’t yet managed to chop off any fingers or start any grease fires. (I’ll just have to try harder.)
TLDR: If you’re looking for a way to bring more big buzzy waves of well-being into your life—and really, who isn’t—cook for yourself. Cook for the people you love. If you can, cook right alongside those people, even if the thought of others watching you work is uncomfortable.
Running low on spoons? Don’t have enough time in the day? Scared you’ll mess it up? Do as much or as little as you feel you can. I promise you that whether I do the heavy lifting for a meal or merely slice a carrot or two, the happy buzzy vibes show up either way. It’s the sense of competence and collaboration that matters, not the volume of work done or effort made. The benefits of cooking for yourself and others are endless, and you can’t go wrong with a little extra confidence now and again. I learned that the hard way, so you don’t have to.
In Defence Of “Internet” Friendship
“So, where did you meet your friend?”
“We used to post to the same forum, and–”
“Oh…so not, like, a friend friend.”
“A friend friend?”
“You know, like a…real friend. Someone you actually know.”
Friendships forged through online interaction have gained considerable legitimacy since I was a wide-eyed teenager first experiencing the internet, but it’s dismaying how often online connections are still casually dismissed by people of all ages. Apparently, there was a top-secret, authoritative friendship conference that resulted in an unofficial friendship hierarchy, which influences the way friendship is viewed by everyone ranging from seniors to high schoolers.
According to this mystical hierarchy, you can’t measure a friendship in love, but in geography. If you only see your childhood friend once a year for a quick coffee and cursory catchup, that still ranks higher than an “internet” friend whom you haven’t met in person but with whom you communicate daily. Friends who live across the street usually carry more weight with people than a friend who lives across the world, regardless of intimacy, frequency of communication, and overall satisfaction derived from the friendship. (This also applies to romantic relationships, as I learned to my immense chagrin while dating men I’d met online.)
Besides the fact that I find this arbitrary standard inflexible and anachronistic, I also feel it comes down heavily on disabled people, who seem to have an especially large number of online friends. Anyone experiencing loneliness, isolation, and/or a lack of conventional social opportunities can benefit from online social networks. Reducing internet interactions to something pale and second-rate targets a population that is already marginalized. While many disabled people can and do seek social opportunities within their geographical sphere, the internet is an enticingly level playing field where the experience is smoother and the supportive communities are numerous.
My isolated childhood remains a living advertisement for the value of online friends. I was an introspective soul who struggled to make friends in traditionally-accepted ways, so internet social circles were far easier for me to embrace. Online, I didn’t have to be the awkward, introverted blind girl. I could talk to people who were older and wiser than me, share resources with fellow blind peers, and enjoy a sense of social freedom that wasn’t present in my small-town ecosystem. I treasured the offline friends I did make, but rural life didn’t offer the diversity and sense of belonging I found online.
Now, as my life becomes busier and my chronic pain limits my social activities, I appreciate my supportive online network of disabled and non disabled friends more than ever. The love, encouragement, assistance, and companionship they offer are as real and meaningful as anything provided by my equally-adored offline friends. As my heart breaks with the death of an online friend’s husband, and soars with joy at another online friend’s success at work, I do not doubt the gravity and significance of friendships conducted and sustained via the internet.
My internet friends are indeed “real” friends. When they are troubled or grieving or frightened, I comfort them. When I need a friendly ear in the middle of the night, there is always someone to call. My online friends send the best care packages, letters, and virtual (but no less heartfelt) affection. We pay astronomical amounts to visit each other, and make memories we cherish for years. We assist each other financially, emotionally, and spiritually. My online friends may not be able to drive me to an appointment or hold my hand when I’m ill, but they can provide love, advice, compassion, empathy, and laughter.
Never let anyone disparage your online friendships. The internet is a fickle medium, and you may certainly find dangerous, duplicitous people there–people whom you will befriend and later delete from every social network, wondering why you were ever naive enough to trust them. More often than not, you’ll find people who are excellent friendship material–people who will fuse your happiness with theirs and do everything in their power to enrich your life. Whatever people say, however much they scoff, appreciate and cherish the friends you make online, and always measure your relationships in love and respect, not geography and popularity.
Dear Sighted Friend…
I’m going to get a bit more personal this week, but my hope is that you will all find a bit of universality in this post, and share it with anyone to whom it might apply.
A few weeks ago, I lost a very dear friend unexpectedly, and her passing brought the value of her friendship into even sharper focus. She was one of those sighted friends who took everything in stride, made mistakes and learned from them, and viewed me as her friend who is blind, not her blind friend. I want to write about her today. I hope you see some of your friends in her. If you do, take a moment to thank them for their friendship. We don’t say these things enough; I know that now.
Thank you for taking the blindness thing in stride so quickly. It took you a little time, but you saw me, not my broken eyes. You supported me while I learned this adulting thing, and hardly considered it “helping”, even when it was. I worried about that dynamic far more than you ever did.
Remember when I would text you with all those blindy emergencies? You made living in a new city, a new neighbourhood, a new building, seem not only bearable, but fun.
Thank you for being unflinchingly honest with me, always. You confessed, early on, that you took me to lunch that first time because you thought I seemed lonely, and felt a bit sorry for me. Once you realized that blind people aren’t hopeless by default, you relaxed into being my friend, not my personal Mother Teresa.
Remember all those times you were blunt about being unsure how to treat me? You were so open and so kind about it, even when it hurt a little at the time.
Thank you for learning from your mistakes, and helping me learn from mine. You had some false impressions about blindness, and you were eager to clear them up. You didn’t know how to guide properly, but you soon learned. You sometimes said things that cut deep, but when I pointed out why, you focused on healing the harm rather than justifying yourself. Most importantly, you helped me grow by clearing up misconceptions of my own.
Remember when you almost walked us both into traffic, then burst into hysterical laughter because the guiding thing was distracting? You were so glad I wasn’t upset by it. Everybody messes up sometimes; you rarely did.
Thank you for your outstanding sense of humour. You were always cracking jokes, once you knew I was okay with them, and you let me laugh at myself in total comfort and solidarity. You approached everything with a willingness to laugh at hardship, and move on.
Remember when you proclaimed yourself to be my “guide dog?” We named you Scout. You always bugged me about getting a dog of my own (only so you could have “snuggles on demand”) but this was as far as I got. Your “guide dog” gallop was legendary.
Finally, thank you for being so much more than my sighted friend. Thank you for considering me as much like everybody else as any disabled person can be. Thank you for treating me, with a very few exceptions, like Meagan, not like blind Meagan. Thank you for blossoming into everything a sighted friend ought to be.
Remember when I wrote that blog post about friendship, and you took the time to remind me, for the umpteenth time, that I was so much more than your blind friend? I do. I always will.
I hope every disabled person can have someone like you around to make them laugh; to prevent them from taking themselves too seriously; to remind them that they are normal in all the ways that matter; and to help them grow.
I love you, Scout. Rest easy.
Exhibit A: On Getting Past The Novelty Stage
It’s natural to be fascinated by someone new. Our brains love novelty; new things and people tend to seem more interesting and attractive by default. So it’s no surprise that many of my most cherished friendships were founded upon at least a little novelty. People are always curious about the blindness thing: they have questions, concerns, etc. While it’s not the most ideal way to make friends, I don’t mind too much. I might do the same if I made a friend who was deaf, or in a wheelchair; I have no doubt that I would have plenty of questions to ask, and wouldn’t always be successful in curbing my insatiable curiosity. All normal, all healthy, all good. But… (and there’s always a but)…
…there are some friendships (and I use the term loosely here) that seem to thrive upon the sheer novelty of disability. People really get into the whole sighted guide adventure. They love coming up with new questions to ask me long after I’ve answered all the usual ones. They want to help me with absolutely everything, just to see how “it all works”. This becomes a little off-putting after awhile, because I’m left wondering whether they’d be my friend at all if not for the blindness. Is that my only selling point? Is that what they’re into? Because if it is, then where exactly does that leave me? What if I eventually lose my intrigue? Will they go off and find some new disability to coo over?
I was once invited out for coffee by one of my instructors. I assumed we’d spend the time chatting about the course; I’d done quite well, and had more than a passing interest in it. Instead, it turned out to be an hour’s worth of Q and A. To his credit, once he figured out that there was more to me than spokesperson for all the blindies of the world, our conversations became far more interesting. Still, it was a rather disappointing experience.
There are even people who stick around after the novelty wears off because associating with me gives them the warm fuzzies. They think that helping me is the nicest, most Mother Teresa-like thing they could possibly do, and it reassures them that they are good people. (FYI, studies suggest that Mother Teresa was actually a little bit nuts, so maybe find a different role model.) I always appreciate magnanimity, but there’s such a thing as too damn much. People make me into a walking, talking source of validation, if you will. Beyond my need for help, I’m worth very little to them, even if they don’t consciously realize it. The more independent I am, (and I’d like to think I’m reasonably independent as people go), the less I matter to them. If I don’t need something, we don’t see each other, period. My value lies only in what they can do for me; beyond that, I’m not worth their time and energy, because they’re either out with more interesting friends, or busy saving other lost little souls. Invariably, the friendship ends when they become bored, and they move along to the next one. And there is always a next one.
Needless to say, I consider this type of friendship highly undesirable. I am fortunate in that I have had this happen to me only a very few times, but each time, it has hurt deeply. I befriend people because I like them; it’s as simple as that. To know that others befriend me because I’m some fascinating superfreak, or because I can help them feel good about themselves, is insulting, damaging, and depressing as all get-out. Friendship is supposed to be grounded in healthy, mutual interest and respect; I don’t want to be someone’s charity case or pet social experiment. I’m not a novelty object, and I’m not a living breathing pity party. If you want to be my friend, please do so because I make you laugh, or because you enjoy my company, or because I make delicious cookies (and I do), or because you think I’m a genuinely interesting person (you know, beyond the eye stuff). Don’t befriend me because you think it’s the “right” thing to do, or because you think you might be able to write a book about the experience later. You certainly shouldn’t befriend me solely because you want to blog about it; Blogging about my broken eyes is my job, damn it! PSA: Blogging/writing about me will not make you much money unless you’re good at embellishment; I’m not that interesting, just as a heads up.
In all seriousness, let me be a bit of a broken record and restate what I’ve been saying all along in these posts: disability in no way negates humanity. Treat us like people, not like objects, or circus freaks, or exhibits. We don’t exist for your personal validation. We love it when you help us, and if you are good friends to us we will adore you forever. Even if you’re not really friends with us, but you’re a naturally helpful person, we will still think you’re awesome. Just make sure that the friendship has a lot more to it than that, because on our end, it will be about way, way more than what you can do for us. If that does not prove true for you, find another friend, because no one deserves to be a walking support system.
For anyone who fears that a friendship is edging towards the danger zone, here are a few tips to nudge it back towards a healthier direction. I’ve used these for my own friendships, and I find them to be very effective.
Analyze the reasons you hang out with each other. If you find that the majority of your hangout time is devoted to helping your disabled friend, you may want to kill that pattern as quickly as you can. Feel free to be helpful to them, but ensure that you’re socializing with them just for the fun of it more often than not. The last thing you want (and probably the last thing your disabled friend wants), is a friendship built mostly upon your ability to be helpful.
Let your friend be of assistance to you in whatever ways they can. Everyone has something to offer; find out what your friend can help you with, so that you can break a potential cycle of mild parasitism. I’m not suggesting that you attempt to make your friend feel useful; I’m merely suggesting that you allow them to do for you what you do for them as a matter of course. Friendships in which one friend is of exponentially greater value to the other are destined for disaster, and can be enormously unfulfilling for both parties. Don’t assume that your disabled friend has nothing to bring to the table. I’ve been known to edit my friends’ essays, play counselor when they have profound issues they need to talk through, and make jokes when they’re sad. (You’ll have to check with them on the efficacy of that last, though.) It can’t be denied that I give fabulous hugs, as well, so there’s that. See? I’m positively brimming with perks!
Resist bringing disability into every conversation. It’s okay to be open about it, and if it comes up, then it comes up. However, there is such a thing as making it into something bigger than it needs to be. It shouldn’t be an integral part of everything you discuss, and it shouldn’t be the centre of attention at all times. Chances are, your friend is sick to death of talking about it anyway, and would love to chat about almost anything else. I admit that it can be cathartic to vent about my disability to friends sometimes, but it’s definitely not something I’d want to do every day. As an experiment, try spending a whole day with your friend without mentioning it beyond what necessity might dictate. If it’s hard to find things to talk about, you know you’re in trouble. On the flip side, if you catch yourself completely forgetting that your friend has a disability at all, pat yourself on the back: you’re doing just fine.
When introducing your friend to others, don’t dwell on the disability; make sure you mention cool stuff about them, like what they’re really good at, or what they’re interested in. Establish common ground, so that the focus can shift away from the novelty of their existence and toward things they might actually want to be known for. If you set the tone, others will follow your lead.
Assess your friend’s attitude towards their disability, particularly in the ways that affect your relationship with them. If you find that they are focused only on what you can help them with, not to mention how utterly tragic their lot is, it’s time to say your farewells. As I mentioned earlier, no one deserves to be regarded as little more than a source of help and comfort. Don’t let yourself be used, no matter how guilty you might feel. The majority of us would never do that to you, so don’t let the few of us who would get away with it.
Finally, reassure your friend that you appreciate them for more than their disability. I have actually caught myself making blind jokes because I felt like that was all the other person wanted to hear. I even found myself going out of my way to discuss it, because it was guaranteed to peek their interest in a way that nothing else could. As soon as I realized what I was doing, I felt almost self-exploitative, and was ashamed of both myself and the state of the friendship. Never let things get as bad as that, if you can help it. Even if it feels a bit awkward, make sure they know that you value them for themselves most of all. It may seem obvious to you, but it may not be obvious to them. For all you know, they’ve been spending hours trying to think of a delicate way to bring it up. I know I have..
Where's Your Dog? 