10Feb/127
A Needless Secret
This week's Diabetes Social Media Advocacy chat on Twitter was all about when and why we do or don't disclose our diabetes to those around us. This got me thinking about the distinction between simple confidentiality and secrets, the latter in my mind being those things that we fear sharing and -may- under some circumstances be corrosive to our emotional health.
Later that night, again on Twitter, I was talking with a friend about sushi. I mentioned that I couldn't believe that I'd be able to make acceptable sushi rolls. My friend noted that it didn't seem to all that hard with the right equipment. I felt compelled to explain that, due to an incident in childhood, I have substantially less than normal dexterity. When asked - gently - if I'd elaborate, I found myself sharing something I'd told almost no one for many, many years.
A Non-Shameful Secret
When I was about six months old, I stopped growing, both physically and developmentally, for between six months and a year. My parents were terrified (especially perhaps my mom, who had worked as a nurse in a polio ward). According to the correspondence that I've seen, my pediatrician was also deeply troubled and didn't know what to do.
I don't know what steps were taken at the time, especially since my growth and development eventually restarted. However when I was about five I was taken to the University of Iowa Hospital for extensive testing. (This would have been around 1965.) The conclusion?
Cerebral palsy.
Although that's a very dramatic diagnosis, the doctors believed that the damage had been minor and that my brain had been able to build new pathways around the affected areas. The prognosis was that though I was behind developmentally, the only noticeable affect would be slight limitations to my manual dexterity: one doctor quipped that the only professions that would be closed to me were professional golfer and watchmaker.
In practice, I have found the impact to be a little more profound than that, though nothing like the image I think many of us would have of a cerebral palsy patient. Although I no longer fall down the stairs, as I frequently did as a young child, I am clumsier than most. When we did square dancing in school, I could sort of participate, but it was deeply stressful as my brain tried to carry out its sluggish dialog with my muscles fast enough to keep up with the music. I played piano as a child, though I hit a wall when my lessons began to call to do anything beyond the simplest chords if they involved both hands. Beyond neighborhood baseball, which I liked when very young, I've never played sports with any success or enjoyment. I couldn't ride a bicycle until I was ten. My hands and fingers just aren't very dexterous, leading to my skepticism about being able to make sushi.
I realize that none of these effects are all that exceptional. Many people are clumsy, many people don't dance vary well, and many people can't play the piano. Nonetheless, I grew up with a sense that my body wasn't a whole lot of good to me. I've never had much in the way of physical courage, having learned long ago that a lack of caution hurts. I've lived my life almost entirely between my ears with my body being mostly an irrelevancy like a movie alien chagrined to discover that it had made a poor choice in selecting a host to take over.
I don't remember having been very concerned with the CP itself: I don't know for sure that I even knew about it before I was a teenager. I do recall feeling very perplexed when two women came to our house one day when I was around eight. I answered the door, and they told me that they understood that there was a handicapped child in the home. As I was telling them that there wasn't, my mom came up from behind, invited them in, and asked me to go read in my bedroom. The implication of that wasn't lost on me.
But Why a Secret at All?
As I told my briefly told my story on Twitter, I felt very conflicted about doing so. I felt that I was Telling a Secret, one that perhaps I ought not to be telling at all. At the same time, however, I felt a relief, almost a giddiness, to be talking about it.
But why should I feel that my brush with a serious condition should be a secret at all? It's easy to understand why I wouldn't discuss this frequently - it's not something that comes up in normal conversation. But my churning emotions told me that something much bigger than that was going on. Part of it, I think, is something like survival guilt, to have escaped so lightly from a condition that is so devastating for many others. Mostly, though, I'm guessing that I've felt somehow that having had this condition was a flaw in not only my body but my self, something that diminishes my value as a person.
This is ridiculous, of course. All of us have challenges, all of us have had things happen to us that have had far reaching affects. It is not the events but our responses to them that determine whether we are lessened or magnified.
And that makes me think I need to get myself a sushi mat and some seaweed.
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February 10th, 2012 - 05:52
I’m betting that you can find/adapt a method for making the sushi. But then, I have no idea how to make sushi.
We have friends whose son was also diagnosed as having CP around the age of 10 (years ago).
February 10th, 2012 - 10:05
Brave post Sir Bob, thank you for sharing. I think that you are an incredible person with whom I identify with in many ways, probably more than you realize. Because of that, I appreciate you opening up a little and letting us get to know you just that much better.
February 10th, 2012 - 10:19
Great post, Sir Bob! That did take a lot of courage to share! I just have to say that I think you’re one of the most incredible folks I know, just because of who you are.
February 10th, 2012 - 10:50
{{{HUGS}}} Mr. Bob. I am very proud of you for opening up and sharing your story.
February 10th, 2012 - 11:41
That’s a very moving post, Bob. I think it is fantastic that you shared that and I’m sure it will help others with similar “secrets”.
February 10th, 2012 - 12:00
Bob. Thank you so much for posting this story. It takes a lot of courage to share something about ourselves with the world that few people know. Your story means a lot to me, and I know I’m not the only one. Thanks for letting us into a little more of your world. You’re amazing.
February 12th, 2012 - 16:43
I’m glad you shared more of your story Bob. There is nothing wrong with waiting until you were ready!