Wednesday, June 6, 2012

It is not as amusing as you think it is

Recently at work, I was walking towards the cafeteria before lunch.  I had just taken my meds and was not fully on, so I was more shuffling rather than walking.  Where I was walking was carpeted and a person who did not know me commented, "don't touch me, I don't want to get shocked."  I looked at him confused and he asked if I was trying to build up static electricity on the carpet (I work with a lot of engineers).  I laughed it off at the time, but in the back of my head wanted to say, "No, I'm shuffling my feet because I have Parkinson's, asshole."  Since it was totally inappropriate to say that at work, and I was not in the mood to make someone feel bad, I let it go and just said, "No, this is how I walk sometimes," and moved on.

However, it got me thinking/wondering what the appropriate response should have been.  Should I have educated him, nicely and explained that what he was joking about was not under my control or was I right to just let it go or should I have made him feel small and insensitive in a "work friendly" way.  Granted, my employer knows full well that I have PD and they are very supportive, so I felt safe talking about it, while others might not in that situation.

This is a big issue in my family, for not just me, but my daughter as well.  I have a young daughter that has many medical issues.  Among them she is deaf/hard of hearing and has a balance impairment.  She did not walk until the age of three and a half and will always have balance issues that she has to overcome.  She is also a motivated girl who works harder than anyone I know to improve and thrive.  Every teacher and therapist she has ever had, has fallen in love with her and is amazed at her progress, motivation and drive.  Yet, I know there will be comments in the future on the play ground and it frightens me.  I don't want anyone to hurt my little girl, but I also don't want to be so overprotective that she cannot take care of herself.  Currently, she is young enough that her classmates haven't yet separated into cliques and/or tease each other but when they do, any parent of a child that takes issue with my kid better be ready to deal with me and my wife.  And if the parent is hesitant about dealing with their child, our response won't be work appropriate.

We don't advertise my diagnosis or feel sorry for ourselves. Our friends know as well as my colleagues at work.  Also, if someone asks what is wrong, I'll tell them the truth about my diagnosis.  However, it is never used as an excuse for me or my family.  My kids are not suffering because I have this diagnosis and my daughter is thriving.  I still wrestle with them, beat them at video games (not as much as they get older), am active with them outdoors, etc.  So, if you're feeling sorry for my kids or my family, don't.  We have a very good life.

Also, don't take this as we cannot find the humor in our situation as well.  When we found out about my daughter's hearing loss, we began learning sign language.  We don't use it much, but we know more than a typical family using baby signs would.  One day when I was signing to my daughter while my tremor was pretty active, my wife turned to me and asked did that mean I was stuttering?  However, just because we can joke about our situation, doesn't give everyone the right to make comments or snide remarks.

No comments:

Post a Comment