Sunday, September 23, 2007

The Medical Mystery Continues

The next day, Friday, August 31, I went to work with the plan that I would leave early, drive to Mass Eye and Ear, meet the neuro-opthalmologist, have some more tests, and start solving the "medical mystery." I don't usually work on Fridays but I switched around my schedule while the kids were away.

I mentioned my "medical mystery" status to a few people at work, but convinced everyone (and myself?) that this was a "cool" thing and nothing to worry about. I'm not sure what they thought.

I got to Mass Eye and Ear on time (weird!) and met Kenny Chang. Although the name may sound like he was a receptionist, waiter, or a friend, he was, in fact, my neuro-opthalmologist. But that's how he introduced himself: "Hi, I'm Kenny Chang." Kenny was probably about 25, but he wore a white coat and seemed very smart and very sincere. I'm going to try to find a photo of him for the blog.

Kenny Change gave me a whole bunch of other tests, and asked me a lot of really unrelated questions about things that had NOTHING to do with my eyes. (I thought he was kind of nosy and maybe a little weird.) During the family history questions, I told him that my paternal grandmother was blind. I didn't know the exact cause of her blindness so he asked me to call my Dad. Ugh. I did and found out that Grammy Baker went blind in her 20s of something called Von-Hipple-Landau disease. Naturally, my dad started asking me a bunch of questions about why I was at a doctor's office, why I was asking about Grammy, etc. so I promised to call him back after the appointment. (I would have preferred to tell him once the "medical mystery" was all solved, but apparently that was not meant to be.)

Apparently, the Von-Hipple-Landau disease didn't fit with my symptoms so the call was totally unnecessary. (Darnit!) Kenny Chang told me that he thought there were a few possibilities of what could be wrong with me: inflammation of the optic nerve, brain tumor, Multiple Sclerosis (MS), Lyme Disease, and some other things I don't remember. He told me that he would schedule an MRI for the following week and that I should call if anything got worse. Worse? What the hell did that mean? Was it going to get worse???!! I decided not to ask what that meant. I was going to practice creative visualization and imagine my "medical mystery" being resolved with some benign diagnosis and that DEFINITELY did not involve anything getting worse.

I don't remember what I felt when I left. Probably scared, probably confused...maybe just numb. I remember asking my Higher Power to help me stay in the day and focus on what I "knew" to be true and not on what I feared or imagined. I called "my committee" members (the name I inherited from Ken for him and my close buds who love me as I am when I'm crazy or happy or sad or mad or scared or a "medical mystery.") They all listened and, in their own ways, echoed my prayer. I am blessed with good friends who meet me where I am. My amazing friend Liz assured me that I could not possibly have a brain tumor because that was her worst possible scenerio and it wouldn't really work for us both to have brain tumors. Made sense to me.

After checking in with the committee, I walked around Boston for a while, enjoying not having to rush home for the kids and waiting for my dilated eyes to return to normal. (I was still legally allowed to drive with one good eye.) I remembered to call back my dad to explain the weird questions. He was very concerned, about my health and about me driving with the kids. When I told him that I had plenty of time to wait for my eyes to return to normal since I didn't need to pick up the kids, he switched gears: "The kids are away?" he asked, "Do you think your lost eyesight is psychosomatic because you miss Ruby and Zane?"

What the ?&%$????!!

I froze and, after a beat, said, calmly and quiety, "No, I don't."

"Well, I don't mean to minimize what's going on..." he started back-pedaling.

"Then, don't." I said, firmly but kindly, before saying goodbye, thanking him for his concern, and assuring him I would let him know how my "medical mystery" progressed.

I thought about every time I had to justify and prove that I was sick or hurt when I was growing up and later married to John. (This may explain my working title for my book: Maybe I'm Just Lazy: One Woman's Journey with MS.) The sucky part is, even though I knew that my dad loved me and was concerned about me and was blowing off my blindness in an effort to "make it all better," I immediately started thinking, "Is he right? Could I be making this up because I miss the kids?" I knew this was a crazy thought but I believed it, you know? I mean, this man, my dad, loves me very much but his one of the people who helped install the buttons that get pushed for me around illness, taking care of myself, etc. His parents probably installed the same buttons on him. Of course, I would be affected by his seemingly harmless question. Also, my dad has emphysema so maybe partial blindness isn't a big deal to him. Ok. That's probably a stretch.
I can't remember much about that night except that I spent the night at Ken's (a rare treat!) since the kids were away. We talked and enjoyed spending time with each other. After he fell asleep, I felt sad when I looked up at the blurry fan blades and struggled to read my book before falling asleep.

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