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Stupid and Useless

  • Posted on December 4, 2014 at 10:00 AM

Those are loaded words when you’re part of a community of people with disabilities. Far too many people have been derided as stupid and useless for far too long. Yet those words struck a chord with me.

“Stupid useless pain is much harder to bare than pain with purpose.” –Dr. David Schnarch

I read these words in a book about marital relations. Of course, the book in question addresses far more serious situations than I am concerned with, but I’m finding the basic tools are applicable. More to the point, the pain I thought of when I read these words did not involve (at least, not directly) my husband Mark.

I’m not prone to hyperbole, so believe me when I say the last two months have been hell for me. I’ve had meds messing with my mind. I’ve had so many troubles and complications that I’ve given up hope, gotten it back, given it up, and gotten it back more times than I can count. I’ve been sick for over a month and got so used to feeling weak and dulled that I didn’t realize how far I’d slipped until I started to climb back up to my strength. I’ve been angry at God. I’ve coughed until my lungs hurt and then coughed some more. And, no matter how much I try to get back on track, I keep slipping back into a cycle of decline-and-recovery. I’m still not even with myself.

Most of this time, I’ve felt like everything I’ve been going through was stupid and useless. It’s been painful—physically, mentally, emotionally, and spiritually painful—and it was useless and stupid and ENOUGH IS ENOUGH ALREADY!!!

Like most human beings, I seek relief when I’m in pain; yet, I’ve gone through some incredibly painful experiences and I’ve bore them much better because I’ve understood their purpose. I’ve born these last two months quite poorly. I’ve done things I despise, like yelling at my child for being uncooperative because I just couldn’t handle one more thing. I haven’t done things that I should, like finishing all the work I promised to my clients months ago.

As an adult, when Mark moved to a new place, he’d walk around until he got thoroughly lost in order to learn more about the place he chose to live. On the other hand, we took a trip as a family and I ended up missing an important turn. Instead of going down I-35, we were going down I-90. We got so lost and mixed up trying to cut across between the two that Mark literally used the sky to navigate for me. I hate being lost. Mark takes it in stride and he finds the way forward.

These last two months I’ve been lost and I hated every moment of being lost. I hated being weak. I hated being tired. I hated being in pain. I hated my complete inability to turn things around. I was fighting so hard against the things I hated and I wasn’t getting anywhere. It was stupid useless pain and it was eating me alive.

Then, I stopped fighting. This time it wasn’t a matter of giving up; it was more a matter of looking around and looking up. Two things occurred to me. First, I knew that I had finally completed my memoir and that, whatever happens, it will be published. Second, I saw that in trying to start from scratch I’d begun writing again.

Granted, my business is a writing business. I’m always writing something. But everything I’d been writing since I obtained my graduate degree in writing was written with a specific purpose in mind. Whether it’s for a client or for myself, it’s all been driven by a purpose, by an objective, by a goal. Everything I’ve written has been practical.

I am not, naturally, a practical person. I’m a dreamer. In living my dreams, I’ve pursued practical purposes that, together, are supposed to realize my dreams. But practicality doesn’t come naturally to me. Dreaming does. So, when it came time to replenish my creative well, I started writing the passionate ideas that came to me—without a predefined purpose. And it was liberating.

Now, practically speaking, I’d stopped writing in order to better use my time in my writing business. I suspect that there was no other way to get me writing again than to knock me so thoroughly down that I had to go back to my roots as a writer just to stand myself back up. You see, decades ago when I started writing, it wasn’t with purpose—just passion. I loved to write. Writing excited me. It thrilled me. Cultivating my talent and turning it into a business was something I was proud of, something I loved.

Then, once I’d actually got my business up and running, there came the pressure and the consequences of that pressure and the consequences of those consequences. I became driven. I was still inspired and I was still passionate, but I wasn’t using that passion or that inspiration, not to its fullest. I was working towards a purpose. Everything else fell to the wayside, including the love I had for what I was doing.

So, while I’m still recovering, I’m recovering with a purpose. I’m recovering my faith. I’m recovering my inspiration. I’m recovering my work ethic. And, yes, I’m recovering my health, too. My life is imbalanced, but I’m getting better now that I have a purpose I can really live with, despite the pain. And I’m about one-fourth of the way through the first draft of a novel that I’ve been trying not to write for at least six months. Now, that was stupid and useless, wasted effort. And I realized it by realizing, once again, that pain is necessary for growth and renewal.


  • Posted on August 9, 2013 at 10:00 AM

When we first bought our house, we chose it in part because we loved the lay-out and we loved the woodwork. Enter the front door and go straight to go upstairs or turn left to enter the living room. But right there, between the living room and the front door, is a heavy wooden door tucked away in a pocket in the wall. Slide that door out and put a barrier between the upstairs and the downstairs, which can be very handy for our family.

A lot of people think that because we have three children with autism we have three children with the same needs. They don’t realize that the boys’ needs often conflict. For example, there are times when Ben needs quiet and Alex needs to make noise. We put barriers between them so both boys can have their needs met. Otherwise, fighting ensues. At times like these, that door is a blessing.

Other times, however, the door just seems like a barrier. Like when I come home with my arms full of groceries and I manage to enter the front door, only to be blocked further by the sliding door. Or when I’m coming downstairs, still more asleep than awake, and (almost) walk in to the sliding door, because I don’t quite see that it’s closed to me.

We have another sliding door on the main level. This one is between the playroom and the bigger boys’ new room (formerly the den). To keep his younger brothers out, Willy often shuts the door at night during those rare times when he goes to bed first. The problem is that we only have one bathroom on the main floor and it’s on the bedroom side of that sliding door. And that door has gotten rather noisy and uncooperative after Brandon and Willy roughed it up. So, when I have to go to the bathroom, I have to disturb Willy getting through that barrier.

It occurred to me that there’s a metaphor in these doors. Disability advocates are concerned with barriers. As advocates, we talk about how barriers most people in society can navigate easily can become overly limiting or even hazardous to people with disabilities. As advocates, we talk about tearing down barriers.

Once again annoyed that I had to navigate the sliding door with an armful of groceries, I resented the barrier. Once again annoyed that I had to navigate the sliding door when I needed to use the bathroom rather urgently, I resented the barrier. But after a day of resenting these barriers, I remembered that they serve a purpose. Not only that, but we bought this house because these sliding doors—these barriers—serve a purpose, a very important and valued purpose in our family.

Maybe it’s because I’m reading Dale Carnegie’s How to Win Friends and Influence People, which is a strangely enlightening look at neurotypical thinking. Maybe it’s because I’ve been thinking so much about what I’d like my future non-profit organization to do for people. Whatever the reason, it occurred to me that all these things we advocates refer to as barriers are also sliding doors. They serve a purpose. They are navigable to the people who designed them.

The barriers are a problem, because they are not inclusive and because they do keep people out. Our society is full of such barriers/sliding doors and the sum total is more disabling than the disabilities of those people who are kept out. But keeping people out is not their function. It’s not their purpose. Navigating barriers like these asserts a level of control over events and puts that control in the hands of the people who designed and used these barriers. So, when we talk about tearing down barriers we are rejecting not only the barrier, but the purpose the barrier was designed to serve and the people who designed what is from their own perspective a sliding door.

In short, it’s an attack. We’re saying they are wrong, selfish, thoughtless, and exclusive. Whether that’s true or not, from our perspective, it’s not true from their perspective. Even if they recognize that there is truth to the attack from our perspective, they’ll have trouble admitting it because we’ve put them on the defensive.

Instead of tearing down barriers, maybe what we need to do is work together to build better sliding doors.