Sunday, December 15, 2013

An Early Christmas Present


I was miserable on Monday, Tuesday and Wednesday last week. I felt like my body weight had doubled by the time I finished my first cup of coffee. I closed my eyes and rested my head in my hands when I went to the bathroom. I felt emotionally overwhelmed by the idea of carrying on this way for the rest of my life. I could barely keep my body upright during meetings and didn't even try at my desk. I avoided unnecessary conversations with coworkers. I can't quite articulate how weak and fragile my body felt by the time I arrived home each evening. I felt like I was dying.

In the preceding week or two, when I was trying a new medicine called Nuvigil, I had somehow managed to forget how miserable I had been every single day for nearly three years.

My new and beloved sleep doctor prescribed Nuvigil a few weeks ago as the first of several ideas he had proposed. I tried taking it at different times of the day as advised and didn't notice any improvements, but I did start feeling more heart palpitations than usual. With no noticeable change except the psychological discomfort that comes with frequent palpitations, I decided to stop taking the medication at the end of last week. It was only when I reverted to my previous level of agonizing fatigue that I understood the difference that Nuvigil was making. I decided I would start taking it again on Thursday morning and closely monitor how I felt.

I was near tears by the time of my Thursday evening commute, as I finally allowed myself to accept and celebrate the impact of this new medication. Finally, after being truly miserable and near despair for years, FINALLY, something was helping. After being told time and time again that I might not ever improve, I have seen evidence of tangible improvement. I am elated and encouraged and triumphant.

I still ran out of gas at the end of each day on Thursday and Friday. I still avoided people. I still rested my head in my hands whenever possible. I still crawled into bed exhausted at 9 o'clock each night. I still rested most of the weekend. I am not well, to be sure. And I am far from cured. But words cannot describe the gratitude and relief I feel for this measurable improvement. I'm certain I will forget about this win soon, when I become accustomed to and frustrated by my new normal, but I write this as my reminder. There is now not only hope, but reason to hope.

My dear friends Marguerite and Chris gave me a plaque not long after my transplant that read "fluctuat nec mergitur". Not only is it the motto of Paris (this francophile's favorite place on earth!) but its meaning couldn't be more appropriate for my situation: she is tossed by the waves but does not sink.


  1. My thoughts and prayers are with you. I am so sorry thst you are having so many struggles but I am here cheering for your victories! Hugs to you!!