Saturday, April 10, 2010

Blind Fear

My vision is blurry today. Actually, I think it's been getting blurrier all week. I have a pretty new glasses prescription so I don't think it's that. And my glasses are clean--or should be since I've polished them with the special cloth multiple times a day this week.

Because Optic Neuritis with vision loss was my presenting MS symptom (and is still the most troublesome and consistent evidence of the disease in my life), I'm guessing the blurriness is my MS reminding me of its presence.  I'm feeling fine otherwise so I wouldn't think it's a relapse. Still, I will call the neurologist on Monday if it isn't getting any better. Perhaps it's the fact that I stayed up kind of late this week or all the sugar I ate on Easter after being sugar free for several weeks. It would be so much easier to blame my diet...or myself--than to live with the insecurity of an unpredictable illness.

Blindness scares me. I had a blind grandmother who lost her sight because of a disease that now has a cure--Van something or other. Anyway, my Dad told me that she lost her vision so gradually that she , was, at first, unaware when she went totally blind. When I was a child, she sent my parents letters that she typed on her typewriter. Sometimes her hands were on the wrong keys and I used to like to look at a keyboard and try to decipher what she meant to write.

When I was in college, I worked for about a year as a reader for a blind attorney. It was the least favorite of three jobs that I had at that time. She was a very, very angry woman. In public, she walked with a cane with a red tip. She told me that when people would approach her at crosswalks and take her arm to help her across the street, she would hit them with her cane and tell them that she learned to cross the street in Kindergarten. She made me read her personal ads from The Phoenix and met several men without telling them ahead of time that she was blind. She said that she didn't see it as a defining characteristic. Apparently the men did. More than one man left the meeting spot when the only woman he saw sitting alone was a blind woman.

I saw a blind woman at a meeting earlier this week and I avoided her (which is actually pretty easy to do). When she went into the bathroom, I didn't follow her in even though I had to go, because I didn't want to talk to her.  Irrational, I know, but fear often is.  When I was first diagnosed, my minister told me that a woman at church also had MS. She's in a wheelchair.  It took me over a year to introduce myself to her although I saw her most Sundays. I know paralysis isn't contagious but I didn't want to think about MS taking away my ability to walk.

I don't want to think about MS taking anything from me. I like being the funny one with MS. I like being the one who says that MS is a gift and really mean it. I like being able to see.

I know that blindness is a very remote possibility but it scares me all the same. Because optimism and the ability to make lemonade out of lemons is now my default, I know I would eventually get to a good place with it, but it would be a difficult path.

I really like being able to see.

I like seeing my children wave and mouth "Hi, Mommy" as they recognize me in the audience of a performance at school. I already can't see that if I don't get there early enough to get a seat in one of the front rows.

I like noticing a handsome man smiling at me from across the room. I've noticed that he has to be pretty close for me to be sure he's smiling at me...or even that he's a man.

I like reading the menu all by myself on the wall at Starbucks and not asking my friend to read it for me as I did tonight and then resisting the urge to tell the barrista that I am not illiterate.

I like recognizing my friends in a crowd. I like seeing the restroom sign when I get to the area where a store clerk assures me that it's located. I like reading books. I like watching television and movies and plays.

When I can't see something or someone very well, it scares me. A lot. Sometimes I get pretty bitchy about it. Like when the after-school counselors at the kids' school gestures that the kids are "over there" and I'm not sure where "there" is as I desperately try to remember what color shirts they wore to school that day so I can pick them out of the visual mess before me. That's what happened when I picked them up yesterday. I ended up screaming at them both for not being where they were supposed to be and all ready to go home. I later apologized and explained that I was scared and shouldn't have taken it out on them.

I think being blind would require a trust level I just don't have. It would also require that I ask people for help way more often than I already do--and I already do it way more often than I used to.

But the fact is, I am not blind today. I have MS. I have blurry vision and I am OK. And tomorrow, if it's blurrier, I will still be OK. The rub is remembering that.


  1. oh, julie, this is my worst fear with ms!ON sucks enough, i had to give up driving back in 2000, now i don't walk, but, please don't let it take my sight TOO!!

  2. I share your fear, and LOVE your insight and perspective. I, too, try to keep the positive spin on MS and how it fits into my life, with Optic Neuritis being my presenting symptom as well. And overall, my life really has been better since my diagnosis a year ago. But it is scary, and I love how eloquently you articulated that fear, while still maintaining your upbeat disposition. You are awesome. Thank you.

  3. really hit me with this one. I have the same fear (I guess we all do) but I too also try to avoid reminders of the "if's" associated with MS. I avoid MS forums/talks and the few times I have gone...I end up depressed by the people I've seen in wheelchairs and using walkers. One young man haunts me to this day...he was in a chair and could only use his mouth to power it. I find it's easier to stay positive when not confronted by what "might" happen...but then I feel guilty since we MS folks are really all in this together so how can I rationalize avoidance of those who have bigger challenges than I currently do... A true catch 22.

    As always, I appreciate your blog.....take care out there