Book Response: How to be Sick

I recently finished reading How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Barnhard.

Barnhard has been living with CFID since 2001. She deals with significant fatigue and "flulike symptoms" daily. While I cling to twelve-step philosophy that says "We have not found it helpful to place labels on any degree of illness or health," it is easier for me to listen to her because her illness has required her to change her lifestyle. Her descriptions ring true for me as words from someone living "inside" chronic illness.

 

She writes of missing family events and trips, facing the ups and downs of illness and transforming isolation into solitude.

A serious Buddhist practitioner and student before her illness, Barnhard uses her knowledge and experience to respond to the challenge. I'm not a Buddhist, but I have found Buddhist philosophy helpful when coping with the changes brought by multiple sclerosis. Sometimes I found Barnhard's use of Sanskrit words made me work harder than I wanted to work, but the message was always worth the effort.

Barnhard deals with the everyday concerns of illness and offers "practices" (one of my favorite words) with which to engage them. At the end of the book, she includes a guide to using the practices to help with specific challenges.

I read the Kindle version of the book, which allows me to see what other readers chose to highlight. Some popular selections:

• '' Our life is always all right,"says Zen teacher Charlotte Joko Beck. 'There's nothing wrong with it. Even if we have a horrendous problem, it's just our life."
• Buddhism defines an emotion as a thought plus a physical reaction to that thought.
• The essence of equanimity is accepting life as it comes to us without blaming anything or anyone-- including ourselves.
• Quoting Buddhist teacher, Ajahn Chah: "if you let go of a little you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end."

It's interesting that the popular highlights are often quotes from other teachers. The value of this book for me is the way Barnhard introduces a Buddhist concept and then tells the story of how she practices with it in her life.

How to Be Sick is an authentic story that includes gentle stories and practical tools with which to respond to chronic illness.

Recommitting to beauty

I am overwhelmed by the number of bloggers writing about living with chronic illness. I bump into them right and left. My monster mind says, "See? You're not special. You're a dime a dozen.No point in adding your voice to the clamor. Just be quiet."

Poor little monster, so determined to be unique in the world.

 I look at pottery made by prehistoric artisans. Graceful forms. Lovely designs.They needed bowls and pitchers and canteens. That's practical. We understand that, my monster mind and I.

They needed beauty. There is where the monster and I stumble.

Why beauty? Beauty is useless. Beauty is selfish.

After a Google meander, I found an answer I like:

"The soul needs beauty because through the experience of it the soul becomes aware of its own existence" writes Rev. Lilli Nye, after noting in her sermon suggestions of animals appreciating beauty. "Our deep selves are awakened by feeling. We are able to touch something of the vastness of our being, the vastness of the universal community in which we reside."

Translating into my own shorthand, she is saying beauty is a path to God.

Nye goes on to quote Robert McAfee Brown, explaining how our instinct for beauty connects with a call to social justice:

How can [concern for] beauty and [concern for] oppression be understood together?
For us the question is, How can they be understood separately?
Concern for beauty is not a moral cop-out. It leads us firmly into the midst of all that is going on in our world.

Where beauty is apparent, we are to enjoy it.
Where there is beauty hidden, we are to unveil it.
Where there is beauty defaced, we are to restore it.
Where there is no beauty at all, we are to create it.

All of which places us in the arena where oppression occurs, where the oppressed congregate, and where we too are called to be.

Beauty connects us to God and, where we notice its hiddeness, defacement and absence, it calls us to service.

The mind-boggling acceleration of user-produced content on the Internet has been identified, pejoratively, as "The Cult of the Amateur." Here we are, millions of us, producing blogs and videos and publishing books.

Did the ancient artisans have monster minds who sneered, "everybody makes bowls. You're a dime a dozen. Don't waste the clay"?

They made their beautiful bowls, graceful in form and lovely to behold. They used them to carry water and hold food. By making them they connected to the divine and were called to serve. All these years later, we don't know their names but we are connected to them through beauty.

So here I am, making my 21st century bowls. I use them to carry thoughts and hold ideas. By making them, I connect to God and am called to serve.

I hope to make them beautiful.

Anticipating (or not) the future

We are heading off to visit Walt Disney World for what may be (my husband and I have quietly admitted to each other) our last family vacation. "Last" because my health is making travel more complicated and difficult.

When I was diagnosed almost 30 years ago, the doctor told me he thought they would have a cure for multiple sclerosis in five years. I have heard that more than once over the years. I recently watched (sorry,I can't find the link) a broadcast of experts on repair of nervous system damage. The experts agreed that we may have ways to repair CNS damage in… say… five years. I have stopped believing projected timelines.

There an effort to create a website that would predict, based on the user's answers,the course of their MS. Will it bother them once and then never again? Will it come and go with aggravating inconvenience? Will it result in significant disability? Will it move so fast they ought to get their affairs in order now?

I've been asking my friends with MS and other illnesses: "would you want to know?"

Most of them say no.

Almost everything I feared MS would do to me it has done, though not as fast as I imagined it would.  I would not want my 20-year-old self to know in advance.

The good news is that living into it has not been as awful as I thought it would be.

I was bothered, in the doldrums of February, by not having anything to which to look forward. We scheduled this vacation and that changed my outlook.

But what can I do next year?

If I were an enlightened creature, I could live totally in the present and not need an imagined future.

It seems to me I have about a year to develop two skills:

1. living in the present
2. anticipating the simple

Next year, as the snows mount and the temperature drops, I may have to plan a tropical escape.I can go to the Tropics at the zoo and drink something poured around a paper umbrella. I can turn up the heat (and/or get some sunlamps) and watch a movie set in the tropics.The trick is to delight in it instead of wishing it were otherwise.

I can practice those skills every day.

But first: as soon as I hit the "publish post" button, I'm heading south.

Surrender

If you follow these posts, you know I have a tendency toward activity: 12 steps to do this, five reasons to do that, fill the bingo card with M&Ms...

A few nights ago, I was led in a guided meditation to imagine an encounter with a Great Healer. Imagine the healer's hands on my head or shoulders, imagine the look of compassion, imagine the message.

The Great Healer said to me: "it's all right. You don't have to try so hard."

Exhale.

I spend time in the busyness of healing: exercises, right eating, right thinking – even meditation becomes another item on the to-do list.

This message reminded me that I am not in control. I don't have to spend energy and effort being in control. No amount of self-improvement will get me into heaven.

I am called again to turn my will and my life over to the God of my understanding.

Selah