In the summer of 2001, I had the next 15-20 years of my life mapped out. I was happily back in the classroom at U.C. Davis School of Law after six years as its dean of students. I'd travel to visit my grown children and my new granddaughter. I'd attend Buddhist meditation retreats as I'd been doing for 10 years.
Suddenly, everything changed. In May 2001, I got sick with what doctors diagnosed as an acute viral infection. I have yet to recover. It has left me mostly house-bound and often bed-bound. Unexpectedly and without warning, I became part of the parallel universe of the chronically ill. Millions of people in this country suffer from chronic illnesses and other disabling conditions. This population is largely invisible to others. Before I got sick, it was invisible to me too.
One reason this parallel universe is largely invisible is that many people with chronic illnesses, even those that are life-threatening, don't look sick. Let me qualify that. The people who are with us all the time know we are sick — they see those subtle differences in our demeanor when our symptoms intensify.
We have a lot in common in our parallel universe. We often think it's our fault we got sick — as if it's a personal failing on our part. We feel that we've let our family and friends down (in the early years of my illness, I would sob to my husband, "I've ruined your life"). We get frustrated by people's lack of understanding about chronic illness. We share that dilemma of how to "present" to the world: Do we spruce ourselves up to try to look our best (and risk people thinking we're well enough to do anything), or do we let our physical demeanor reflect how sick we really are (and risk feeling guilty that we're not doing enough to lift our spirits)?
Living with chronic illness can feel like a full-time job — a job for which we didn't train and often are ill-equipped to perform. First, there's the inordinate amount of time we must devote to this club we never asked to join: the health care system, with its doctors, physician assistants, nurses, lab technicians, automated voices at the other end of the phone. Then there's the difficulty we face each day when, before committing to the simplest of activities, we must first weigh the plusses and minuses. How do we compare the plusses and minuses of going to lunch with a friend (where the minus may only be having to rest that afternoon) with those of attending the wedding of that same friend (where the minus may be having to spend a week or two in bed recovering)? This constant need to scrutinize even the most mundane of activities can itself use up our energy stores for the day.
In this new universe, most of the activities I enjoyed with family and friends or even by myself are no longer within the realm of possibility for me. I loved to visit my grown children. Not an option now (on some days, even talking on the phone can be difficult). I loved to read for pleasure. Not an option (because of dizziness, the expression "pleasure reading" is oxymoron for me). I loved to teach and mentor students. Not an option. I loved to go on Buddhist retreats. Not an option.
After becoming ill, it took me six years to find my way back to a life of fulfillment and joy. First, I had to accept that, at least for now, my old life was gone. Then I had to find a middle path between what I used to be able to do and the alternative of doing nothing but lying on the bed, cursing my fate. I had to figure out how to engage in activities that had brought me joy, but in a way that wouldn't exacerbate my symptoms. I knew I'd have to be inventive — to think outside the box.
So, instead of traveling to see my children, I stay close to them through instant messaging. I lie on the bed with my laptop; they use either their computers or their cell phones, and we have "live" conversations. Instead of pleasure reading, I "pleasure listen," using audiobooks.
My toughest challenge was finding a substitute for two treasured activities that appeared to be unrelated: teaching and going on Buddhist retreats. In the end, I combined the essence of each — helping others and practicing Buddhism — and took up a new pursuit: writing. One day I reached for my laptop (I call it my bedtop), opened a new document and titled it "How to Be Sick." I looked at it for a minute, hit "save," and closed it. "Nice idea," I thought, "a book in which I can use the Buddha's teaching and my own experience to help others who are chronically ill. Too bad I'm too sick to write it."
But I did write it — lying on my bed, laptop on my stomach, notes strewn about on the blanket, printer within arm's reach. Some days I would work too long and the result would be an exacerbation of my symptoms that left me unable to write for days or even weeks. During the darkest moments, I considered tossing out all the work I'd done, despairing of ever being able to complete it. But I pressed on and, indeed, finished it.
It took several years (and many tears) to learn how to thrive in this parallel universe. I still have rough days when I wish I could do whatever I wanted (although, in reality, who can do that?). But, on the whole, I'm content and at peace with what I can do and how I can contribute, even if from the bed.