Reaction Time

A faithful reader who is also a dear friend of mine replied to my post from the other day where I said that I was having trouble organizing my thoughts. She suggested an idea for a topic that I've been mulling over ever since I read her email. Her idea was for me to write about how my mom reacted when I told her that I had MS.

My mom had a tendency to react nonchalantly to major/sad/important news, at least outwardly. Looking back, if you told her something that didn't ignite that Irish temper, you weren't completely sure what she was thinking. If it was very joyous news, then she was happy right along with you, but telling her about a “crisis” didn't elicit much of a response.

I never really realized that until now.

The last few years when we told her certain things, we expected tears or sadness, but we got...nothing. And we were always puzzled by that. It kind of seemed as though she was uncaring, which is the polar opposite of the kind of person my mom was. We would rationalize her reaction, dissect her reaction, and replay her reaction. I guess my mom had to store the news away until she could deal with it on her own terms.

So, going back to my mom's reaction when I told her about my MS diagnosis, I don't really remember how she reacted, probably because it was a non-reaction.

I'm guessing the worst possible scenario was playing through her mind. I had a cousin on my dad's side who had MS. My cousin was confined to a wheelchair; he had a severe case. I'm sure my mom was thinking of my cousin and picturing that fate for me when I told her.

To be honest, 2004 was quite a while ago, and beyond the visit where I received the name for all of my mysterious symptoms, it's kind of a blur. I remember sinking to the depths of despair thinking about my daughter, and the possibility that I would pass this on to her. Of all the things I hoped to give her, teach her, and show her, MS certainly wasn't one. I still get concerned about my kids when they get weird symptoms, but it's not as pronounced as it was back in 2004.

I remember having the debate of who I should tell, and who didn't need to know.

In subsequent years, my mom would ask some questions, but I don't think she really understood what MS was for me. Heck, all these years later, I don't even understand what MS is for me. Years ago, I didn't have actual pain in my legs, but they would feel verrrrrrrrrrrrrry heavy. I would shuffle/stagger/stumble while walking, and she would always ask me if my legs hurt. I'd say that they didn't hurt; it was more like having 50-pound weights attached to each leg while walking through hip-deep mud. People with MS will know exactly what I mean, and people without MS will sympathize, but won't truly understand.

And that's okay.

It's really not anyone else's responsibility to know how I feel. I go back and forth about what people say, how they say it, and how I react. Sometimes when I hear “you don't look sick”, I'm okay with hearing that. Yet sometimes, I want to scream. I guess I'd just like the world to understand that “looking sick” is different for everyone.