Where the Heart Leads, the Mind Follows ... Eventually

I have really been working on my self-flagellation issues. I have been beating myself up big time for the last four months, second guessing every decision that led up to my current predicament. I spent most of Friday and Saturday whipping myself mentally for wanting to get out of the ring, out of the fight. I berated myself for being a quitter. When people would say to me "Don't give up" I could feel myself bristle. Believe me, this feels nothing like a surrender.

I don't know if it was any one sentence that someone uttered or the total effect of the outpouring of love that finally made me lay down my whip. At some point I realized that I had been choosing life all along. From the time I first became ill many years ago, I kept choosing to go about the business of living. I finished my PhD, I got married, I worked, I had two beautiful kids, I threw parties, I volunteered, I kept going. When my illness started worsening last year, I still kept going. I taught my classes and I took my kids to Europe. It wasn't easy, but I did it. And over these last several months despite how badly I felt, I got out of bed every day, I opened the rust colored curtains and allowed the sun to shine in through the open blinds. I tried to force food into my nauseated body through my mouth and the tube. When the kids arrived home from school, I helped them with homework, took them to their activities, and tried to do whatever I could to help Bill around the house. I missed two soccer games and one violin recital the entire spring.

Last Friday I wanted to accept my fate. This is entirely different than giving up. Acceptance is the realization that you have done all that you can, given something all that you have, and failed to experience the desired outcome.

There was one thing I didn't count on. While my mind had decided to give up, my heart had decided to keep going. I got out of bed, I opened the curtains and the blinds. On Sunday I made the bed, complete with decorative pillows, for the first time in months. I went downstairs and I ate. And I ate again two hours later, and two hours later. The meals were small: jello, juice, clear broth. I wasn't nauseated. I still felt as though I were in a fog but I could feel it lifting slowly.

On Monday, my friend Nina drove me to Whole Foods where we bought refried beans, coconut milk, soy yogurt, and other products intended to beef me up. I'm glad she took me because I otherwise might not have gone, but I was willing to follow her there. I came home and made a coconut flan. For lunch I ate some carrot soup and juice. I had my flan for a snack and followed up with a chickpea soup dinner. The food tasted good. My body felt happy with the tube finally banished from its inner workings.

On Tuesday I practically sat at the kitchen table all day. I ate small, frequent meals so as not to push my delicate system too quickly. I started to feel happiness creep into my tired and weary soul. I started to feel the slightest glimmer of hope.

Tuesday afternoon Aidan had an appointment with his psychiatrist (folks, you only know half the medical drama we have been dealing with!). I had brought with me some brown cashmere yarn to begin a scarf for Aidan. I intended it to be one of his future birthday gifts and wanted to get it started (though knitting feels so wrong in the summer). The color is warm and comforting and the shade that I imagine his hair will someday settle upon. My fingers working the needles I thought of each knot as a token of my love for Aidan. I thought I would write him a card that told him to look at the scarf, 32 loops in each row, lord knows how many rows in all, and to think of the scarf as a measure of my love. And I pictured him wrapping it around his neck and feeling a hug from me across whatever divide separates the living and the dead.

As I was knitting, a woman asked me what I was making, "A scarf. I only know how to knit rectangles." She laughed and I unexpectedly continued, "Someday I am going to learn how to knit something else." After I said it I realized that my mind had finally caught up with my heart. "Someday I am going to learn to knit something else," I repeated to myself, "in this lifetime."

I had my appointment with the TPN clinic yesterday. I weighed in at 80.2, which is exactly what I was last Thursday in the pulmonary clinic so that was good news. My labs all looked good with no evidence of malnutrition. My triglycerides were off the charts though thanks to the fact that I am now living off coconut milk, avocados, and eggs. And I always had great triglycerides ...

Prior to going to the TPN appointment Bill and I had decided, via email, that we wanted to give me one more shot at doing this myself before going the TPN route. In part this was to allow us to take our planned vacation to the beach in July as well as to allow me some time to gather the mental strength to go yet another round.

Faye, the TPN nurse was great. We talked at length and I told her my suggested plan. After we spoke she went and got the MD, Dr. Shapiro. I could tell he was a little nervous about delaying but he said, "You know you're own body and you will know when you are getting worse. You need to call us immediately if you start feeling badly." I told them I would weigh myself weekly and report back to Faye. I am scheduled to be seen again on 7/2. In my own mind, if I gain >=1 lb this month, we delay again given that they can only make me gain, at most, 1-2 lbs a month on the TPN (If they let you gain weight any faster you risk fatty liver disease). So we will see.

I continue to chose life. And I hope my body is well enough to go along with that plan, at least for a while longer. I'm not sure what made my heart and mind decide to keep going. I guess I'm just not done yet.