It is the best of times; it is the worst of times.
Last Friday, I met a guy. At a bar. On the dance floor. A totally un-me way to meet a guy. I was attracted to him immediately. Beaming smile. Warm eyes. I wanted to kiss him right then and there. Who was this girl who wanted to kiss a stranger on a dance floor? No one I'd ever met before. But there we were. Dancing. A few text messages and a phone call later, Josh and I were going out. Tuesday night we went out to a pacific rim restaurant. We walked by the river, talking. We had drinks at a jazz club, were Josh tapped out the rhythms on my bar stool with his thumb and foot. He didn't know it, but it gave me chills. When he dropped me off, after midnight, he put his arm around my neck. He touched my hair with his hand. I was dying. I said goodnight. Daily texting ensued.
Thursday night, I got home from watching a movie with some friends. I opened my laptop to see that my mom had emailed me. The title of the email was "Neurologist's report in." I had an inkling. I opened the email. This is what she wrote:
"Although I would have liked to talk with each of you in person, email was the only option to tell you all at once. I called today Dr Laza's office said I tested positive for Huntington's Chorea. Obviously, I didn't expect that diagnosis. However I like to think I am the optimist in the family. Any for whatever reason this is the illness the Lord has sent to me. A line from the encyclopedia here at home says "In a few individuals the mental changes appear only late in the disease, and sometimes never occur" My follow up visit with Dr Laza is July 23. I will ask her questions as to how to keep as healthy as possible. Jeff and I are willing to do whatever the Dr recommends. I will tell my sister Liz and my brother sometime after I have spoke to each of you. I love you all very much, MOM
Reading this email was similar to when I read the email that told me that I had not matched for an internship position. I read the first line, and skimmed the rest, unable to read the words. So there it was. Plain as day. No longer just a speculation. No longer a curious quandary. A reality. I was the one that urged Mom to get tested. And now I felt guilty. Why should she have to face her fate so directly. Why hadn't I let her go on in denial that what had killed her mother, was in her blood too. There is a 50% chance that I will develop this devastating disease as well. And if my leg twitches have anything to say about it, it seems pretty likely that I do have HC. And I must face the music of the testing someday not too long from now myself. My whole family is in shock. My brother, my pregnant sister with 2 disabled sons, my dad with a wife whose health is slowly deteriorating, and my mom, who wants to be strong and cheerful for all of us. I've decided to support her denial of negative emotion in this case. Because who am I to break down what might be the healthiest thing she's got going.
Friday I rode my bike from Akron to Cleveland on the beautiful tow path, and rode the train back. There were creeks and the river, flowers, birds, rabbits, bridges, tunnels, and a bright blue sky. I rode with Rita, my adopted mom of sorts. We spoke of her trip to Peru and her family drama. I did not mention mine. But she knew. I spent the afternoon floating in Meg's pool. Sparkling clear water. Butterflies flying overhead. We ate dinner at a diner. I drove home. I watched videos on YouTube of people afflicted in late-stage HC. I cried. I read my Anderson Cooper book. He wrote of the suffering in the world and in his life. I wondered: Why.
Today we played softball. It was a gorgeous day. Sunny. It felt so good to throw, hit, run. Afterwards we got ice cream. I got coconut cream pie flavor, as part of my effort to taste a large spectrum of Handel's flavors.
Josh and I made plans to watch a movie after he gets off work tomorrow night. It will be our first time hanging out in a private setting. There will be movie-watching on the couch. And all that comes with movie-watching on the couch. Late at night. All alone. In my house. With his hands.
So tomorrow I must prepare for all of this. Tonight I'm going to read my book until I fall asleep.
Goodnight.
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