They just don’t get it

 I’m in the middle of a huge fight with my sister.  She sent me a very ugly email where one her issues is that I never open my windows.

This stuck in my craw, not for the nastiness of the email but for the ignorance that many have about our condition.

I can’t stand up.  You need to stand up to open the windows.  I wish I could open my windows.  I live in Florida and it would be lovely to open the windows on cool days, but I can’t.  And I don’t need ignorance making me feel bad about that.

I’m sure there are a host of assumptions that able-bodied people make about us.  Please think before you speak.  You may be hurtful.  But maybe that was your intent.

There are several instances of this.  The best thing that we can do is tell people what you can and cannot safely do.  Education is the key and ataxia is so rare that even doctors can be uneducated about it.  Sadly, it falls on us to be educational ambassadors.  I know we have enough to deal with.  But we need to add this to the list.