Clarification.

After talking with Steve about the subject of my last post, I wanted to clarify a little. I think I've written before that I'm not shy or secretive about my disabilities, and that I know it's easier for people to interact and communicate with me if they know what I can and can't hear or see. I have no problem telling people that I'm hard of hearing or visually impaired, and I don't mind when people express interest in or curiousity about the causes and effects of my hearing or vision problems.

What bothers me is the unsolicited, out-of-the-blue query about the state of my vision loss (or hearing) from someone who knows about my disabilities but isn't an intimate friend. Perhaps I'm overreacting to think this is chutzpadek, and to allow it to bother me. But it feels something like the difference between asking a new acquaintance, "what do you do for a living," and asking a casual friend, whom you haven't seen for a couple of years, "are you still unemployed?"

Comments

[Julia (not that one)]

I felt I had to comment on this one. We have a little bit of the same situation. Our kids, have a kidney disease(count them, that's 4 kidneys) and a vision disorder (not progressive) and everyone around us knows. Family, friends, friends of friends and even coworkers and clients.

So many times during our day, everyone asks how they are doing. I'm never sure if they really want to know, or if it is just a polite question. So I've taken the road that they all want to know. Don't ask if you don't want to know theory.

Some days are better than others. We have a rough road most days keeping meds, doctor visits, therapy, behavior problems, and educational challenges in check. So I always answer truthfully. Some days it sucks. Most days it's just a "rough time."

I guess what I'm getting to is that I always prefer to believe they are interested because they care. They care about me, us, our family. So since I believe it comes from a loving place, it's a loving gesture of thought. And I always try to remember that when I'm talking about something sad for the hundreth time. And even though it bugs me, I remember that I invited them to know about the kids and us, and that I choose to believe they want to know because they care about us.

And the side benefit, people are more aware of the disease (ARPKD) and more aware about organ donation, and that can't ever be a bad thing in my mind. No matter how many times they irritate me asking questions.

Thanks for sharing your story.