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I’m so grateful that my son, Jamal, and my daughter, Mara, were grown before I got sick. I have the greatest admiration for the many parents I’ve met online who are living with chronic illness while simultaneously raising children. Reading their stories always puts my difficulties into perspective. And I can’t imagine the extra pressure it would put on my caregiver and husband, Tony (pictured with our dog, Rusty). He’d have to get the kids up and out of the house in the morning, drive them all over town to various activities, guide them in their studies, shop and cook for four…well, the list goes on. I am simply in awe of those who suffer from chronic illness (and those who care for them) who also have parental duties. |
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So, what is “My Life Now”? The book has a chapter titled What To Do When (It Seems) You Can’t Do Anything? where I discuss how people can continue to engage in many of the activities that bring them joy, but in a way that won't exacerbate their symptoms. For example, I talk about how I use modern technology, such as Instant Messaging, to stay close to Jamal and Mara, even though I seldom see them in person. And here I can update my book by adding that I also IM with my granddaughter, Malia! (On the right, I'm with my two granddaughters, Malia and Camden.) Here are two more examples of how I’ve “adapted.” |
| Before getting sick, I was an avid reader, but the expression “pleasure reading” is an oxymoron for me now. Due to the constant discomfort in my head from the illness, there’s nothing pleasurable about reading. But I found several online sites that rent audiobooks (and, of course now, they can be downloaded). So I “pleasure listen,” and, as a result, the world of books remains open to me. People who listen to books quickly learn that the quality of the reading is as important as the quality of the writing. My two favorite readers are Bernadette Dunne and Anna Fields. I’ve discovered several wonderful authors simply because I rented an audiobook based on Bernadette or Anna being the reader. One day, it occurred to me that I listened to their voices more than anyone but Tony’s. In 2006, when Anna Fields died as a result of a storm sending a flash flood into her basement recording studio, I cried as if I’d lost a dear friend. |
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| Before getting sick, I loved to work in pastels and in charcoal, but suddenly the set-up and the clean-up alone were more than I could handle. How could I continue to be an artist, but from the bed? My nana taught me to crochet when I was young, but following a pattern didn’t satisfy my creative urge. So I started making hats, scarves, and shawls from the bed, improvising as I went. (The “set-up”: reach over the side of the bed and pick up the piece of work. The “clean-up”: drop the work back over the side of the bed!) Here’s a link to some of my creations: |
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| Of course “My Life Now” includes facing all the difficulties I write about in the book, like coping with the relentlessness of symptoms; weathering fear about the future; coming to terms with a life of relative isolation; facing the misunderstanding of others; dealing with the health care system. When I feel overwhelmed by my “new” life, I remind myself of its many blessings by re-reading the quotation with which I begin the book: |
One, seven, three, five—
Nothing to rely on in this or any world;
Nighttime falls and the water is flooded with moonlight.
Here in the Dragon’s jaws:
Many exquisite jewels.
~Setcho Juken (980—1052)
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