The Land of the Living

This last week was physically pretty miserable. The experimental drug that I started one the previous Friday caused an enormous amount of edema. On Monday, I weighed 85 lbs. By Tuesday morning I weighed 88 and one Wednesday I weighed 89.5 lbs. Four and a half pounds of water weight in 2 days is a lot on someone my size. My feet, which my Dad calls Freddy Flintstone feet because they are short and wide like squares, looked like cubes on Friday night. Everything was swollen, even my backside. In addition to the edema, the drug caused a great deal of musculoskeletal pain. So nights were pretty painful.

But there was an upside to all this: the emotional fallout that usually accompanies my physical downslides didn't materialize this time. I was calm and peaceful despite the discomfort and the very real possibility that the edema could be a harbinger of doom. I don't know where this serenity came from but I welcomed it as a pleasant change of pace.

I've noticed subtle changes in me over the last few weeks that suggest that I am beginning to accept this new life of mine despite its frustrations and limitations. Months ago I stopped reading newspapers and magazines because I couldn't deal with anything beyond my own little world. Two weeks ago I read Newsweek cover to cover for the first time in over four months. Then I started to wonder where my New York Times had gotten to. I used to spend an hour reading it every morning, but as my illness worsened I just threw it in the recycle been without so much as glancing at the headlines. Suddenly I felt like looking at the pictures and maybe reading a headline or two. But the paper hadn't landed on my doorstep in nearly three months. So I called them, "I haven't received my NYT in three months. Do you know why?" The person on the other end of the line must have thought I was crazy, "You stopped in on May 28th." I have no recollection of doing this but the date coincides with when I had my feeding tube removed. While I didn't restart it, I thought it was a good sign that I actually cared to know what had happened to it.

Last Thursday was the Meet and Greet night for the new school year. The kids were in Philly with my folks so Bill and I went alone. It was my school debut in my new wheelchair. I was nervous, assuming the kids would shy away from me and the adults would be immobilized by that mixture of pity and uncertainty that seems to make us all backpaddle from awkward situations. But I underestimated everyone. Teachers and fellow parents greeted me warmly, many sinking down to "my level" to converse and inquire about how I was feeling. Two children in particular made my day. Alex, a boy I tutored last year until I became too sick to continue saw me in the hall. "Miss Michelle!" he yelled and came over to me. This boy tugs at my heart in a way I cannot explain. He is sweet and shy and simply adorable in his blond crew cut. I was so happy to see him and, without thinking, I opened my arms wide to hug him and he just hugged right back. I asked about his summer and he excitedly told me about basketball camp and meeting some of the Duke players. "Oh, I know you just loved that!" I responded. I was happy to learn that he and Amelia had the same teacher and that I would see him again this year. Later, a little girl in Amelia's class who I helped with her reading when she first arrived from Mexico, stopped me to say hello. We chatted about her summer and she told me about her mother's birthday party. I told her I was glad she was in Amelia's class again and I would be seeing her soon. These two kids acted like being in a wheelchair was "no big thing." To them, I was still "Amelia's Mom," the same person just sitting down. And they helped me to see it that way too. Before I left the school I made plans with the librarian to volunteer on my good days. She assured me that someone would meet me at my car to help with the wheelchair so it was as easy as possible for me. And I felt excited to have an opportunity to have some sense of purpose and a way to get out of the house once in a while.

Last night I read a French magazine to practice my pitiful French. I had been studying daily until the feeding tube fiasco started then, as time went on, mastering French seemed like a strange idea for a dying woman. But last night I got half way through the magazine getting the gist here and there. I've been paying for on-line Rosetta Stone lessons for the last 6 months and I don't think I have gone once. Maybe today I will start again.

Today I woke and quickly did my chest percussion vest. This is a vest that vibrates very quickly to loosen the secretions in my chest so that it is easier for me to cough them up and I don't have to retch violently four times a day. So far, it seems to be helping. I still cough but I am not vomiting as much. After my 20 minute "Good Vibrations" session, I quickly dressed and ate my token soy yogurt (20 years later I still miss the real thing), and went outside with the kids to wait for the bus. I took photos to commemorate their first day of school as I do every year and waved good-bye as they drove away. I don't think I have waited outside with them since last fall.

I seemed to have rejoined the land of the living albeit in small doses and small ways. I know now that my old life is gone. The Michelle that darted from one activity to another with boundless energy no longer exists. I think of my old self as a hummingbird, colorful and busy, flapping it's wings wildly and darting to and fro sucking every last bit of juice out of life. I liked that version of me and I do miss her but she simply doesn't exist anymore.

When I first moved to North Carolina, I was a huge cyclist and I spent many an hour riding in the rural areas around Chapel Hill. On those rides I used to watch the hawks above me, awed by their grace and ease. There I was furiously peddling to move forward while these birds of prey just seemed to glide effortlessly with the air currents, watching and waiting for something worth the energy expenditure. Now I realize I am like the hawks, minus the gracefulness, watching and waiting and discovering that joy and love and happiness are all still available and I don't have to chase after them or create them after all. I just have to be patient and aware and these happy moments will come.