Caring but clueless in Portland

"You just don't understand what it's like...".  I hear that a lot from people with ataxia on websites and blogs.  Maybe, but my experience with family and friends is that it certainly isn't from lack of trying.  Most importantly, it's not from lack of caring.  

 People struggle more with the if, when, and how much help to offer.  Often, the strategy is not to do anything that might be perceived as a threat to one's effort at self-sufficiency. People with disabilities can be set in their ways or have their preferred routine.  No one wants to unwittingly disrupt that, but we (disabled persons) can also be a pain to deal with.  I'd like to say I make it easy by not being easily offended or set off by offers of assistance.  Earl has never said, "Tam, what do you want?"—out loud, that is.  The thing is, I don't always know.  I do ask for help more often now and have found people happy to be useful.  Opening a door is a simple task for someone to do, but a big deal to me. I've learned a "thank you" will do; people don't need a Nobel.  Duh. 

Having spinocerebellar ataxia (SCA) and being out among unaffected people, caused me to think about the "you don't understand" comment a lot.  I used to think I was pretty sensitive to others.  Having ataxia has taught me that while I don't have a clue about anything outside of my own view of the world, I don't need to feel badly about it.  I do recognize there are many life experiences that aren't in a frame of reference I "get".  But, in the past, I confused caring with understanding.  Fortunately, I never looked searchingly into someone's eyes and uttered the words, " I understand", but now I understand that I didn't understand.  I think back to Earl's and my aging parents, friends with cancer, people in pain, a friend parenting an autistic child.  I was more interested in patting myself on the back for providing unsolicited help and consolation, than paying attention.  My heart was in the right place, but my head was uh—elsewhere. 
I was introduced to a couple at a party that included both friends and strangers.  My friends all knew about the ataxia, but most of the strangers just ignored me or wondered in silence.  Seeing my walker, persistent sitting posture and nearby helping husband, the man asked, "So Tammy, how did you get here?"(the disability, not the party). His wife was mortified that he would ask me how this had happened(whatever this was) and tried to shush him. I gave him a brief (I'm sure he was grateful) explanation of SCA and will remember him always.  He was my hero for being direct. The takeaway was if that I don't "get" a given situation, I can ask; recognizing, of course, that not everyone is inclined to talk. It's easy to forget that, while quiet on occasion, I'm a oversharer by nature. 

The lesson: Having spinocerebellar ataxia gives me no special insight into life's other happenings. If I need to know, I'll just ask.

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