Monday, July 13, 2015

Being Blind Isn't Binary

Ladies and gentlemen, we are BACK!  I apologise for the looooooooooong silence; I meant to resume writing shortly after I graduated in 2013, but I decided to edit and annotate all my previous entries and that project has stretched out much longer than I anticipated.  I am not done with it, but I felt a strong need to share the following thoughts with you and did not want to put it off until I finished.  Right now the hold-up is that philosophy paper I posted.  I’m adding sources and citations, making it a proper research paper.  I may set that aside, finish up the other entries, and return to it later while posting new material so as not to leave you hanging again.  But for now, I hope you gain something from the following post.

This blog is primarily about living with a service dog, secondarily about living blind.  While I’ve made no secret about my political and religious views, they generally do not have much impact on the day-to-day differences between my life and that of a sighted person.  Or rather, I didn’t think they did until this last weekend.  Now I’m not so sure.

I’ve been blind for almost twenty-five years.  I’ve been a believer in Christ and a regular church attendee for the same amount of time.  I grew up in a nondenominational church that used to be Baptist, and I’ve had the privilege of worshipping with believers from a variety of denominations all over the country.  I pray regularly and have maintained a nearly daily Bible-reading habit since I could read.  I’ve taught Sunday school, gone on mission trips, witnessed to nonbelievers, and participated in service projects and a number of other outreach programs.

In all of that time, I never once prayed for God to restore my sight.  It never occurred to me.

Nobody else ever did, either, until this weekend.  My husband and I visited some friends over dinner this last weekend, and after the meal we enjoyed a thought-provoking discussion on faith-healing and the power of the Holy Spirit through prayer.  Nearing the end of this, our friends asked Derek and me if we wouldn’t mind if they prayed over my eyes, because they believed that God would restore my sight over a period of time and they wanted to be a part of the healing process.

The prayer itself and what happened during and afterwards are not particularly relevant to what I would like to share with you today (no, I can’t see any better than I did that night).  What I would like to focus on is why I myself never prayed for healing.  This is not a discussion on faith-healing and the gifts of the Holy Spirit, but rather a discussion on how to live with both hope and acceptance.  In other words, how not to become bitter and frustrated by being a disabled Christian.

I’ve met hundreds of legally blind youth and adults growing up.  Many of them are fairly well-adjusted to their disability, but a few of them are rather bitter and frustrated with their situation.  The myth I keep hearing people spout regarding disability is that hope for a cure is poisonous.  If you hope for a cure, you cannot ever truly accept your disability and you’ll be disappointed and become bitter.  I remember being asked on several occasions at various conferences by disabled adults leading various activist groups and workshops whether or not I’d like to have my disability corrected.  I always felt a distinct pressure to say “no, I’m ok the way I am.”  Anyone who ever answered “yes” always got an inspiring speech about needing to accept being disabled because it was an advantage, not a disadvantage.

I would like to see 20/20.  Right now, if possible!  (Actually, God, if You could wait on that a couple of years till Prada retires so she doesn’t get confused and saddened because of early retirement, that would be great!).

I am also perfectly satisfied with being disabled.  I’ve turned it into an advantage, an inspiration for myself and others, and a source of comic relief for both myself and those around me.

Hope and Acceptance is NOT a binary function.  Having one does not preclude mastery over the other.  I know this because I live with both every day.

Most people make the mistake of relegating Hope and Acceptance to the category of “feelings.”  This is one of the reasons I never thought to pray for healing.  If I felt hope, I could also feel disappointment, and then I wouldn’t feel like I’d accepted my disability and I’d become one of those bitter people who are no fun to be around and give disabled people a bad name for being grumpy, self-interested, sympathy-mongers.  I fell into the same trap that most disabled people do.

Hope and Acceptance aren’t feelings.  They’re lifestyles.

I have bad days, days when I really wish I could see.  That moment when the cashier and I play “keep-away” with my credit card because I can’t see she’s handing it back to me, or trip over a coffee table, moments when I suffer physical pain and/or embarrassment because of my disability are very difficult to get past.  Pain is easier for me to ignore than the social awkwardness, despite my claims to being totally comfortable with myself and not caring what others think.  It’s hard to completely escape social conditioning and accept that I play by a different set of rules of courtesy, like “if you leave your bag on the floor in a walkway, it’s not my fault if I trip over it even if something breaks inside” or “if you run into someone with a cane, it’s your fault, not mine.”  I can think of two very specific instances on which I’ve actually cried because of my disability (this is a big deal for me—I don’t even cry when Bambi’s mother gets killed).  I’ve allowed myself the cathartic exercise of saying “I hate being blind” out loud on a couple of occasions—but once I say it, I feel better and I know I don’t hate being blind.  Everyone has something as significant as a disability which they wish would change or go away or had never happened to them, but mine makes me a superhero!  Everything I do becomes that much cooler because I’m disabled, and who else gets to take their fluffy four-footed friend with them everywhere?

Acceptance is a lifestyle, a choice that I have to make every single day, sometimes multiple times a day.  It’s easy when people tell me how amazing I am, or when my disability opens doors for me to encourage and help people, but on days when I’m sporting coffee table bruises and fall victim to social misunderstandings I have to choose how long I let myself think about those instances.  I throw that instance up on a scoreboard next to all the good things that happened that day because I’m blind, weight them according to how I value each experience, allow myself a moment to feel sorry for myself, get annoyed at myself for feeling sorry for myself, and then actively look for other things to occupy myself.  I have to make a series of choices after each bad moment, one after another, to keep my mind busy until the event is distant enough that it falls into perspective.  This is Acceptance as a lifestyle.

It’s not easy—I still remember a moment at a park when I was less than eight years old when I sat at the bottom of a slide and a boy a few years older than me called me by name to him a few yards away.  But he was far enough away that I couldn’t recognise him, and he was stage-whispering so I didn’t recognise his voice.  I remember the agonized seconds of debating whether or not I actually knew him, and if I could safely navigate the playground to get to him, so I sat there staring at him, immobilized by unknowns.  These are the sorts of moments that make Acceptance difficult, but absolutely necessary.  If I am joyful enough over my disability to declare myself a superhero, yet I still remember this incident so vividly after almost twenty years, how debilitating would it be if I didn’t strive for Acceptance every day?

At the same time, I am extremely hopeful that in ten or twenty years, the Foundation Fighting Blindness will call me up and say “hey, we’ve got a clinical trial for a gene therapy to correct your condition.  Do you want to participate?”  I would learn to drive sometime around the age of 50—and probably only enjoy it for a couple of decades before I get too old.  I’d actually learn the rules of basketball enough to join a community team, maybe even get my pilot’s license if I could afford it!  I occasionally daydream about being able to drive lunch to my husband at work when he forgets it, like Mom always did when Dad left his on the counter on his way out the door.  And I’d definitely take a drawing class, and spend hours studying the Mona Lisa—I always liked the idea of that painting because her name was vaguely similar to my own and I never outgrew that childish fancy J

But this Hope and these daydreams do not interfere with my decision to Accept where I am in this moment.  If I get to be 50 years old and there is no cure for my disability, there are still plenty of cool things I can do with my life.  There are too many cool things to do in this world to be disappointed by missing out on a few—there’s always something new and exciting you haven’t thought of yet!  Maybe I’ll be the first blind person in space, or travel the world teaching tai chi to disabled veterans.  Maybe I’ll be invited to TED, or consult on some White House policy for serving the disabled population.

My point is that you can Hope for a thing and Accept its absence at the same time.  Indulge in a daydream now and again, keep up with scientific research, and maybe even pray for it if you are religiously inclined.  At the same time allow yourself cathartic moments of frustration—but make sure they are moments, not hours or days, and throw them up onto that scoreboard to measure them against all the good you’ve received and done because you can’t see, or walk, or hear, or live in chronic pain, or whatever your physical or emotional struggle is.  And—if your scoreboard is empty, start asking people around you what they think you should put on it.  I guarantee that the people around you think you’re cooler than you realise.  You have a fan-club, whether you know it or not.  And, at the risk of sounding cheesy, I’m in your fan-club J

So, will I pray in the future for my condition to be cured?  I think I will.  I’ll have to do some thinking and researching on whether or not I believe that cure can or will come miraculously or thorugh science, but whatever the medium, I believe it can come, and I would like it to.  I am not afraid of Hope because it cannot force out my hard-won Acceptance as long as I keep fighting for it.

I am blind.  I want to see.  And I CAN rejoice every day, no matter what happens.

God bless!
Anneliese

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