Making up the difference

The road to Lalu Farm, Bredon Hill

Things are coming together. The weeks are passing, and I’m getting more and more into the swing of my work. I’ve gotten past the initial worry of not keeping up, and I’m going with the confidence that I have in the unseen, seemingly mysterious ways my brain wraps itself around experiences.

Because it does. I can’t explain exactly how or why, but it manages to take care of itself, one way or another. And when I mess up, which I tend to do (being human and all), I sit up, pay attention, learn… and move on. I keep going. I’m a little like a shark, that way — I have to keep moving, or I’ll drown.

Thinking about the unusual ways my life has unfolded, I was marveling this morning at how well I’ve actually done for myself, despite having a very different perspective than most people I know. I guess I’ve had my synapses and axons mixed up often enough, to end up with a brain that’s obviously not like everyone else’s. Or maybe I might have turned out this way, even if I’d never been injured. What-ever. The point is — and I was contemplating this today while I was driving to work… I heal.

I adapt.

I figure this sh*t out and move on.

I always have… even when I couldn’t understand what people were saying to me, and I couldn’t decipher the words on the page in front of me, and people were tormenting me for fun, and when I had a heck of a time staying vertical, and when I would completely freak out at the drop of a hat (literally), and I couldn’t sleep past 3 a.m. for months and months on end.

One way or another, I figured out how to heal, how to move on. I figured out how to abandon the strategies and ways of doing things that used to work so well for me, but suddenly no longer did, for no reason I could decipher.

I think in a way it was lucky that I never fully realized why it was that I was having so much trouble. It forced me to not look outside myself, but to look within. It forced me to buckle down and just figure things out. Not many people were  cutting me any breaks, coming to my assistance, etc. And the ones that tried often screwed everything up. And then they’d get pissed off at me(?)

The usual expectations of growing up and performing on par with everyone else were totally on me, even though I was often not up to fulfilling them for a very good reason. I didn’t start out being up to it, but eventually I often figured out how to get myself up for it. The same pressures, the same tasks, the same responsibilities as everyone else around me had, were laid squarely on my shoulders. And I had no excuses. I had no reason for my start-stop life. I had no explanation for why I was the way I was.

So, I had to make do. I had to figure out a way to make up the difference.

There was no point in struggling to hang on to old ways of doing things. There was no “old” way of doing things, because countless things I tried and did often ended up in the crapper before my activities could become habits. I’m not sure my life has ever allowed me the luxury of developing certain habits for long. Something was always happening to screw things up — little did I know why.

But that’s not important. The important thing is, I adapted. I changed. I shifted my focus. Because I had to. No excuses. No explanations allowed. Not even a plausible reason for my track record of underachievement was permitted. It screwed me to the wall countless times, but it was also necessary for my growth and development. No matter how hard it was, no matter how much I struggled, no matter how intensely painful it was, none of that mattered.

All that mattered was the results. That I did what I was supposed to. That I lived up to basic expectations — and paid the piper, if I didn’t.

It’s interesting — I’ve been having ongoing conversations with people here and there about our “culture of accommodation”. And the same people who publicly support accommodating people with disabilities, secretly admit to not wanting to cut everyone a break just because they have a tough time of things. Sometimes, you just gotta suck it up and get on with your life.

Now, I’m sure I’m going to ruffle a few feathers with this little missive, but I have to say, if people had accommodated me throughout the course of my challenging life, I doubt very much that I would have gotten as far as I have. Truly.

Making up the difference. It’s made all the difference.

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2 thoughts on “Making up the difference

  1. okay – you asked for it.

    I am not quite sure I understand what you are suggesting.

    Certainly tenacity and perseverance are good qualities (applied to the right things and in the right degree) but , especially in brain injury, they alone cannot change things. Part of the problem of BI is learning from your mistakes without being your mistakes; which isn’t easy because the messags from the world around us (and internalized by most folks) are:

    - mistakes, failures, gaffes are volitional and represent a lack of moral/ethical quality
    - people do not want to improve, learn or change and can only be forced to do so
    - change happens instantly
    - perfection is acheiveable and a reasonable goal
    - the valuation of perfection is based on obvious measurable criteria such as your salary, title, credit rating, size of your house, car you drive, behavior of your children, etc.
    - behaviors must fit within the norm section of the bell curve, rare exceptions will be made for some slightly quirky brilliant or talented folks if they meet other standards
    - illness, disability and personal struggles are to be hidden for they are essentially shameful
    - people will get away with anything if you let them

    There are other cultural messages out there similar to this; all equally insidious and equally destructive. While I am a big supporter of technology I also believe that technology is driving our culture; we are as we market ourselves, we have to multi-task and do so at a fast pace, we collect data, friends, links, and scores which define us, we must always be accessible, we must tolerate high stimulus environments, we must always be active mentally but not physically, there are no personal boundaries, and a few other traits such as the ability to comprehend frequently obscure technology interfaces.

    We have immersed ourselves in a culture of fighting, being tough, and punishment based motivation. The idea of accommodation is not about giving anyone a free ride, making it easy, going ‘softer’ on them than anyone else, it is not about pity or feeling sorry for someone. If it makes people feel better then they can think of accommodation as a way to improve their own outcomes – because they are enabling valuable resources to contribute and support their work, their business, their lives who otherwise might be excluded. Saying to someone that you cannot ‘accommodate’ is a form of prejudice.

    Now, having said that I don’t believe every person is meant for every job or can do every task. Just as there are some people who are built to run marathons at high speed, or some who can paint or write well or some who can fix cars, or some who can care for children (and that is a skill – I see many who cannot) – there are some folks who can and do perform in various kinds of workplaces with success more easily than others.

    I think that if you had grown up with a supportive atmosphere that encouraged you to frame yourself internally as capable, recognizing that there really are people in the world who are cruel, who are thoughtless but that they do not define you, if you had grown up thinking and feeling that what you did and how you felt and acted was not abnormal or wrong you might have a different feeling about many things, you might not have suffered so much, you might not have even had so many injuries. Yes, you may have still made mistakes – EVERYONE makes mistakes – big ones too – but those mistakes would not weigh on you years later, you wouldn’t feel you have to compensate for them or explain them. Yes, we all learn from tribulation and overcoming difficulties – accommodation isn’t about shielding anyone from that – but its about making things possible, about opening the door to hope, it’s about nurturing the strengths and gifts of all individuals. What makes anyone think that a handicapped person cannot think great thoughts? Let’s talk about Stephen Hawking’s accommodations……

    Truth is I believe in accommodating a lot of folks – defined disability or not.

    People get confused – they think understanding and respecting brain injury means that people don’t experience consequences or don’t have to manage. That’s incorrect – but they should not be punished. Much of the time the answers are simpler than we think, we just presume it’s all so complicated. Stuff like allowing someone to wear earplugs or using a different lighting source, letting someone record a lecture or meeting, teaching someone how to instead of simply expecting them to figure it out, constructive criticism, non-judgment. Instead we have created work and world environments where we find pleasure in the failure of another because it wasn’t us.

    Katrina, BP, Wall Street, Afghanistan – these things reflect our unwillingness to accommodate, to respect all people, to see the whole picture.

    I don’t believe BI people are less than, I believe they have struggles, many times those struggles can be overcome – but with patience, with work, with support and effort. Knocking them down makes angry and bitter people – NOT stronger ones. BI is not necessarily lack of intelligence or capacity, it is a processing injury that impacts a persons ability to interface with the world. Sometimes that can impede their functioning severely and provide, at least in the short term, limitations. I believe the problem with rehab is that it says this is who you are and gives you a box. Instead I think rehab needs to focus on here is how your are right now, here is the most important thing we are going to work through now – with an eye to the future. When we achieve this goal we can move on to the next – if YOU, the survivor want to. This is hard work, rebuilding a brain at mid-life is a bitch – many days I do not want to do it. And so it is my choice if I want to seek endless possibilities – this all means something different for the 30 year old, the 50 year old and the 80 year old.

    I have no less a right to my life than anyone else. If we can accommodate overinflated egos, abusive personalities (did you see the recent study that the more money a CEO makes the more likely they are to be considered mean?) hostile competition, and greed then surely what will it mean if I need to have someone repeat a sentence for me?

    Elvis Costello said what’s so funny about peace, love and understanding – perhaps we should add acceptance, flexibility, non-judgement, accommodation.

    Who the hell in this world can stand up and say they know the answers. If they exist please – let them call me. Cause if they do I will shut up once and for all.

  2. Hmmm… I’m wondering myself what I was suggesting, in places. Still figuring it out. I suspect that a lot of my personal views have been shaped by being raised for half my childhood in a rough-and-tumble inner city, and the other half in a rural area that was pretty far removed from the modern world. I grew up in places that were both overly inclusive of everyone and everything, and so short-changed everyone and everything in some subtle but significant ways… and in places that frankly didn’t give a damn how you did — you were just expected to DO.

    So much of this is shaped by personal experience, personal need, and personal deprivation. All I’m saying, in the end, is that it’s in my (our?) nature to heal. And sometimes the route to healing is very hard — but necessary.

    All a mystery. Every brain is different. Every brain injury is different. Every live has its own unique flavor.

    But in the end, we are all human.

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