How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard
My rating: 5 of 5 stars
Picked this up after enjoying the author's blog on Psychology Today.
Toni Bernhard is a former law professor who caught a flu-like disease on a trip to Paris and that illness never went away. Not only is she chronically ill with an invisible illness, that illness is unclassifiable, most closely resembling chronic fatigue syndrome.
I should stop and define those terms. Invisible illnesses are those that you can't immediately see when looking at a person. Such conditions tend to attract the "you're not really sick" reaction. And by unclassifiable illnesses, I mean illnesses that stump multiple specialists.
To compare, I'm currently disabled, officially since November 2008, unofficially I've had declining health for some time now. One of my conditions -- I won't describe them all -- was just diagnosed last October (2012) and is currently being treated. But I have had the condition in some form for at least a decade. I don't think I had anywhere near as many specialists baffled as Toni did, but I certainly empathize.
Beyond Toni's personal story, the book contains accessible Buddhist teachings and practices with an eye to those who are chronically ill, as well as their caregivers.
I enjoyed reading about Toni's personal story. It's a great relief to find someone who understand feelings that are hard to share with those who aren't fighting a chronic condition, no matter how much those individuals love us.
For example, do you ask for help when you could probably do something for yourself, at perhaps a great cost, or do you save up the "favors" for things you really can't handle? For me, I have reduced mobility, so I often find myself questioning if I should fight the stairs or ask someone else to grab whatever I need from a different floor. If I fight the chairs too many times, I'm paid back with extra arthritis pain.
As for the Buddhist side of things, I've been admiring Buddhism from a distance for the past year or so. Having distanced myself from monotheistic religions, I find it easy to respect a religion that doesn't focus on a supernatural being, that embraces science, and that grows and changes with the times. That said, I'm not going to be taking up daily meditation practices any time soon. Although, I may read up more on the subject.
I found it valuable to muse over the fact that much of our suffering comes not from the physical symptoms of our illnesses, but from how we mentally react to the situation we find ourselves in. We suffer less when we give up the expectations of who we should be, and who we used to be.
I resounded with the four brahma viharas - often translated as the four sublime states (from page 46):
- Metta or loving-kindness: wishing well to others and to ourselves
- Karuna or compassion: reaching out to those who are suffering, including ourselves
- Mudita or sympathetic joy: joy in the joy of others
- Upekkha or equanimity: a mind that is at peace in all circumstances
May I be peaceful.
May I have ease of well-being.
May I reach the end of suffering...
And be free.
When setting down the book for the night, it occurred to me that I already had a sort of metta occupying my subconscious, although it is phrased as rejecting negatives rather than embracing positives. From the band 30 Seconds to Mars - my personal favorite - and their song "Attack":
I won't suffer
Be broken
Get tired
Or wasted
Surrender to nothing
And give up what I started
And stopped it
From end to beginning
A new day is coming
And I am finally free....
While I may pick a more formal metta at some point, I was delighted to find a new meaning and a new depth to a song I already loved. The band had hinted at Buddhist influences in the past, but this was the first time they jumped out at me.
Beyond the four sublime states, I also resounded with the tonglen practice (pg 97). Instead of breathing in peaceful thoughts and images and breathing out mental and physical suffering, you are supposed to do the opposite. We breathe in the suffering of the world and breathe out whatever kindness, serenity, and compassion we have to give.
I can't find the exact spot in the book, so forgive me if I muddle this one a bit, but I also resounded with a passage where Toni spoke of lying on the bed and watching the world go by outside her window. And that not only had she found empathy for all those who were sick, but she found a new empathy for those doing the more thankless jobs that keep this country running.
Since I've been disabled, I too find myself more empathetic with many of the less fortunate demographics: the disabled, the elderly, the poor, the maligned and marginalized. It also gave me a real appreciation for the federal safety net. I used to see those who cheated the system. Now I see those who couldn't cope without that hand up. The Republican party, who want to dismantle the federal safety net, has permanently lost my vote.
In conclusion, I didn't resound with everything in the book, especially the strange zen poetry, but overall this is a great read, especially for those who are chronically ill or those with a loved one who is. I'm looking forward to Toni's next book which is currently estimated as coming out in September (2013).
P.S. I fucking hate the new LiveJournal editor. It fucked up my html and I had to re-post that whole thing twice.