Alyse Booth's Personal Profile
Reflections • Since the Trial
My husband Steve asks me to write what I have learned from this experience.
First, I want to thank Stieg Larsson, the Swedish writer, who died far too young after delivering the manuscripts of his trilogy, The Girl with the Dragon Tattoo, The Girl who Played with Fire and The Girl Who Kicked the Hornet's Nest, for accompanying me on this journey. Truth is I will be ecstatic when I finish the final book. His novels have become a little like an addiction you wish you didn't have but can't seem to shake.
As I am sure is true of all SAA patients, I have learned that I am far more resilient than I thought. I also realize that my passion for life serves me well in difficult situations as it helps make them not only tolerable but, in a strange way, enlightening. I want to add that the attitude and professionalism of the NIH nurses made a huge difference in how I handled the treatment. They are all committed, well-trained, pleasant and accessible, especially Donna who is warm and the epitome of no-nonsense efficiency — the perfect combination for her job. This week there are 16 patients in the unit, which has a capacity for about 26. (There are no other patients in my trial.) So my day and night nurses — most in their 20's or 30's — have time to talk with me. This may account for the personal relationship we develop and their quick response to my Campath reactions. I so enjoyed learning about their lives. They mention that the turnover rate among nurses here is high due to burnout. It is tough to care for the many very sick people who come through these doors.
I could never have gotten through this without my extraordinary husband, Steve. Without his love, patience and constant support and the support of his family and my friends who live nearby, I may not have made it through this trial.
Finally, having a life-threatening illness has made me appreciate every day I have on this earth. Each day really is miraculous. I am grateful for every minute and for the love that sustains me through each day.
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