Yesterday I told Corby I have ataxia.  Then my sister, my dad, and Corby’s parents.  Now my friends and family know.  The response has been really humbling.  I don’t think I’ve cried so much in a consecutive 24 hours before and I am sort of annoyed that the tears keep coming.  Stop it already.  

A few people have expressed that they would have shut down and shut people out.  That’s certainly the approach my mom took.  And this is not to say I won’t hit rough patches in the future and do just that.  But, at least for now, I am hoping for something different.  This is going to be a hard road and I cannot walk it (or jazzy it…with or without jazz hands) alone.  I need love and support, and if these initial responses are any indication, I have it in droves.

Thank you to everyone who has reached out to me.  I know as well as anyone that a disease affects more than just you. It affects your spouse, your children (Beans actually doesn’t really seem to give a shit), your parents, your friends.  

I remember fighting with my mom as a teenager.  She was mad because she felt like I didn’t care enough about her or her disease.  After laying into me rather harshly, I responded that she was not the only one affected by her disease. It affected me too.  I may not have let her in on my feelings, but I was constantly fearful.  I didn’t want to lose my mom and I was so scared of losing her.  I think we had a better understanding after that fight.  She realized I had shut down because I was scared and not at all because I did not care.  

I think one of the scary parts of a disease like this is that it breaks you down over time in all sorts of ways.  And little by little, as you break down, the world around you continues.  I know my mom was scared that she would be left out and so she proactively removed herself from that world.  She abandoned her friends (and to some degree her family) before they could abandon her.  

Not me.  Yes, life will go on, but I’m coming with it.  Jazz hands and all.