Last Saturday we visited old friends for dinner and entertainment. Aside from eating and visiting, the evening was spent performing as well. My friend has a parlor Grand Piano and he played on it for us beautifully. My wife, Robyn, thrilled to play music on it, as well. We had just given our little spinet away that morning because Robyn couldn't play at night without disturbing the neighbors. So Robyn played the Grand with delight. And loudly. My 15 year old played her guitar and sang, then I accompanied my 12 and 8 year olds on the pennywhistle while they performed some Irish Step Dancing. What an idyllic evening.Unfortunately, I was neurologically off as detailed here. Consequently, I was not really at my top skill when I stood there with pennywhistle in hand. I was particularly concerned that I wouldn't be able to keep rhythm for the girls. One peculiar symptom of my disabilities is that I tend to drop notes when I play. I have always been good at dancing but strangely unable to tap out a consistent rhythm with my hands. Very frustrating for a perfectionist, and lousy to dance to.
No, it doesn't make any sense, but then that's Disability all over. We make the best of it and move on. When I'm alone in my home a dropped note here or there is a small matter, but when performing for an audience it becomes a matter of great agony. What was most agonizing for me, however, was being unable to explain why it bothered me. My friends were polite and understanding. There was no need to apologize as far as they were concerned. I was among friends. Yet I still pressed the issue because I wanted them to understand. Instead, I sounded to them like I was apologizing for making mistakes.
A broken leg makes sense; a quirky mental disability doesn't. No matter how much I try, I can't seem to communicate to the non-disabled how frustrating it can be to have full mental capacity one moment, then mental vacancy the next. They simply do not understand. Heck, I don't understand it.
I've thought about this quite a bit since last week and I've come to a conclusion. I press hard to be understood because I'm lonely. I struggle within my own mind to master my life and my own mind seems to rip the rug out from under me when I least expect it. That is so annoying I could just scream sometimes, and only others who experience the same frustration can really relate. And yet I desperately need people to understand my struggle. I want them to appreciate how truly sweet my victories are. Somehow, though, I fail to get through to them. I lack the words, especially when I'm neurologically off.
How ironic that our very disabilities make it hard for us to explain ourselves to others. If you struggle with Depression or AD/HD, for example, you can probably relate. Often a command of words is the last thing we have during those moments. And still we struggle to communicate - to be understood - and this makes us human just like everybody else. Nobody likes to be lonely. In our case mental dysfunction tends to isolate us from the rhythm of those around us. We find ourselves alone in rooms filled with people, powerless to connect what we feel and think with our mouths, and out of step with the dance.
Coping Strategies:
- Is it really important for friends to understand your disability as you understand it if they already accept you as you are? Keep that in mind.
- If you aren't able to express your point or your friend isn't able to understand, don't push the matter. You'll be better off trying again another day.
- If you can't keep any of these points in mind, you might be better off holding your tongue. It is very difficult to complain about something without sounding negative or even whiney.
- Many people believe our attempts to explain our disability is pitifully dwelling on it, or even feeling sorry for ourselves. First, be sure the listening party is a good candidate. Second, be sure the timing is right for the conversation. And third, don't complain: explain.
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