Ten years ago this summer, law professor Toni Bernhard and her husband flew from their home in California to Paris, planning to immerse themselves in Parisian culture for three weeks. But on the second day there, Toni became very sick with what appeared to be an acute viral infection. She spent most of those three weeks in a Parisian bed. And ten years later, Toni is still sick.
Despite being mostly bed-ridden, she wrote a book she called How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and she also blogs at HowToBeSick.com.
To mark her 10th anniversary milestone, the medical website KevinMD.com ran Toni’s list of 10 lessons she has learned about being sick. Here is a sampling of those tips, remarkably useful for those of us living with heart disease, too:
♥ Take time to grieve your old life and then create a new one.
“I was in such denial that I forced myself to return to work while sick. When my body finally broke down and I had to trade the classroom for the bedroom, I was angry for months. Then I was paralyzed with sadness over the loss of my identity: With my children grown and gone, who was I if I wasn’t a law professor?
“Denial, anger, sadness/depression, acceptance – these are well-known as stages in the grieving process. I could have weathered denial, anger, and sadness with a lot more grace had I known they applied to a life-disrupting illness.
“It took me many years to reach a level of acceptance that made it possible to create a new life. Your new life may be found in photography, embroidery, writing, public service (my friend in Australia, Marilyn, does relief work from her computer, re-uniting animals with their owners after natural disasters).
“If your favorite activities are longer within the realm of possibility for you, think outside the box. The first few years after getting sick, if someone had told me I’d write a book from the bed, I would have said, “Not possible.” But I did. Open your heart and mind to possibilities that are within your reach.”
♥ Friendships are affected by illness, often dramatically.
“Some friends have disappeared from my life. Others have stayed around, but our relationship has been altered by my illness. Before I got sick, I loved to share the details of my life. But now those details are not so appealing: a catalogue of symptoms or a list of side-effects from a medication; the details of a doctor’s appointment.
“It took me several years to learn how to be a friend while sick. Now I focus on subjects other than my medical condition and, to my surprise, it has turned out to be a treasured respite from my illness.
“As for friends who haven’t stuck around, our friendship may have faltered for any number of reasons – their discomfort about illness, my unreliability as a companion. I know they wish the best for me, and I wish the best for them.”
♥ Trust your judgment regarding what you can and cannot do.
“Most of us were raised to be eager to please others. As a result, we often question our own judgment about what’s best for our health. I’ve reached the point where I don’t care if someone thinks I can do more than I know I’m capable of. I trust my own judgment.
“Sometimes I’m willing to push my limits and pay the consequences. But it’s my choice. Recently, my husband and I went to the wedding of a dear friend. It was a small gathering at her house. After the ceremony, it was hard to skip the restaurant celebration, especially with people asking us to come. But I knew I’d reached my limit – in this case, the limit of how far I could go outside my limits!”
♥ Cultivate gratitude.
“One day, my mind was churning with a list of grievances about living with chronic illness. I decided to turn those thoughts around. I picked up a pen and told myself to list everything I liked about being sick.
“I started this little exercise with a cynical smirk on my face. But when I put the pen down, I was astonished at what I’d come up with. Here are four of the twelve items on my list:
- I don’t answer to an alarm clock;
- I’m never stuck in traffic;
- I have the perfect excuse to avoid events I don’t want to attend;
- my “To Do” list is very short.
“Now when I go to bed at night, I reflect on what I’m grateful for in my life. The list is long.”
♥ This is just my life.
“Zen teacher Joko Beck said:
“Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.”
“I find great solace in these words. Not everything can be fixed – perhaps not even my health.
“Just my life” has meant ending my career years before I expected to, being mostly housebound, feeling continually sick, not being able to socialize for very long. These are the facts that make up my life. I accept them and vow to make the best of the life I’ve been given. My heartfelt wish is that you do too.”
Before she learned how to be sick, Toni Bernhard was a law professor at the University of California-Davis, serving six years as the law school’s dean of students. Read the other five tips from this essay called ’10 Tips From 10 Years Sick’, published on KevinMD.com.
© 2011 Toni Bernhard HowToBeSick.com