06 August, 2009

A Morning View on Expectations

I was thinking about writing about people’s expectations when I first heard of the shooter, George Sodini’s complaints from the news. Researching it further, he seemed to be very disturbed. It may have built up for years, combined with the family background and life experience. Whether he was expecting too much out of life or not we’ll never know. If I could guess, I bet you he has never traveled outside the U.S. Regardless, I do feel that we, especially in the U.S., don’t really feel we are lucky and privileged. Instead we want more and more and are perfectly happy demanding more. We want all the trimmings we see on TV. There are never any guarantee in life besides our upcoming death. When I was a novice in June, the simplicity of my existence was actually refreshing and liberating, so I can see how I could focus more on mindfulness and cultivating wisdom.

Reflecting upon this, I can still learn a lot about how I deal with my own life. It wasn’t but 24 hours later that I found myself, a bit agitated by the fact that people still don’t fully understand how my injury affects nearly everything I do. I write this, in fact, so I won’t have to speak it in conversation, hoping that someone will take this as a jumping off place to comment on. I will speak to family and they will say you sound good today, if I am standing and walking around because that affects the quality of my voice. If I relax and sit down especially on a couch it leads to a restricted diaphragm and does not help. I will meet new friends will say you just need to speak more, etc. Uggh!

I have a collapsed palate, which causes my air during speech to come out my nose. Combined with being totally numb from the nose to the chin inside and out, it makes for a hard time to physically remember how to say a word. I can scream, and lift it partially, but if I speak quietly it is coming out my nose and totally exhausts me. Kind of like being winded, but all times using a new area of the brain for speech, so “girlfriend” it ain’t pretty. For some words it sounds pretty good out of the blue, maybe because I just heard it, or it accesses some untapped memory of speech. Then quickly it deteriorates; so just let me say learning a new language would be a miracle. But with all this said, it or should I, is not all that bad. I just be more quiet when things are difficult or when others don’t understand. My silence is not because I don’t have anything to say. It may mean that it may be too complex and wordy that I can’t figure out how to whittle it down to simple speech that I can say with ease.

I should not expect people to understand the complexity of speech and what for me now is the miracle that make speech possible. I have seen specialists for surgery who did not recommend a correction that would only introduce complex snoring problems. And I won't go into details about the other side effects of brain injury that also cause speech difficulties. So, don’t worry I will not pull a Sodini. Instead, I can perhaps gather some practical wisdom of not expecting understanding from others that even took me years to grasp. I have quickly realized, I am by no means unhealthy or unable deal whenever I see someone in a wheelchair or crippled. I am rich with love from my partner and family and friends. I am extremely lucky.


Anonymous said...

I always think I understand the complexity of your speech situation...and the intense effort it takes. You are an inspiring man!

nase said...

Very often as clinicians, we don't even come close to appreciate the real true extent of one's suffering and by reading this, you have made me not only a better person but enriching to my professional knowledge as well. thank you very much and truly inspiring.

Was Once said...

I am unique, in most ways, no one can see physically that anything is wrong. There is not one day I don't experience a marked change in how others perceive me, once they hear me speak (Unless they have pure intent, I've noticed). So, if I can't transform this into something positive, humorous, or educational then it just becomes my burden.

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