I just finished reading Toni Bernard’s How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers. I read it to see if this would be a helpful book for clients with chronic illnesses to read. And, I think it is–given the right timing of course. Because I am also “Buddhist inspired” and live with a chronic illness and work with clients with chronic illnesses, most of the material in Bernhard’s book was not new to me. However, she brings it together in a user-friendly, personal, believable and non-preachy way that I think both Buddhist-inspired and non-Buddhist-inspired readers would appreciate. The book offers practical tools for dealing emotionally with such difficulties commonly experienced by people with chronic illnesses as people not understanding one’s experience or even believing one is ill, frustrations with the medical system, and social isolation. By using examples from her own experience, Bernhard, who is mostly house-bound and bed-bound by her illness, teaches a variety of Buddhist concepts and techniques that have helped her reduce her emotional suffering and increase her sense of well-being over her decade-long illness. At the end of the book, there is a chapter in which common emotional difficulties are reviewed along with the techniques that Bernhard suggests for reducing the suffering they can entail–kind of a handy crib sheet that readers can pull out when in distress in order to remember what to try.
If it’s worth doing, it’s worth doing half-assed
Some years ago I read an anecdote in one of Rachel Naomi Remen’s books about a woman with a chronic illness who embroidered the above phrase into a wall hanging that she used as a personal reminder. As a person living with Fibromyalgia, I’ve found it a very useful slogan indeed.
Case in point: I love to go hear/watch Flamenco at a trendy late night club on Capitol Hill. One time I had a longstanding plan to go experience Flamenco on a certain date with three of my friends. When the night in question rolled around, I realized I was really quite sick. I thought about cancelling, but I love Flamenco, and the friends are not too shabby either. I went. We ordered drinks and snacks and, finding myself basically unable to eat due to severe GI discomfort, I pretty quickly surrendered my fork. The performance started, and I was still acutely aware of my physical pain. But, soon, my soul, like the dancer that night, was on fire. By the end of the evening, I was so exhausted from fighting back pain that I could barely stand up; at the same time, I felt filled with inspiration. Physically, I was stumbling, but, emotionally and spiritually, I was in flight.
Sometimes, it appears, the Buddhists are right: It is possible to separate pain from suffering. Furthermore, if it’s worth doing, it may well be worth doing half-assed.
Chronic Illness as a Management Task
I’m going to spend a little time on my blog, starting now, talking about different aspects of my own experience with a chronic illness, Fibromyalgia. This may give readers some insight into how I think about living well with a chronic illness when working with clients.
Aspect number one: It’s a Management Task
I’ve had Fibromyalgia for over a decade now and I’ve learned something about its mysterious ways. In my case, the illness results in sleep difficulties, digestive problems (including occasionally incapacitating abdominal pain), muscle aches over most of my body, and fairly severe headaches. Luckily, all these symptoms usually do not manifest themselves at once. Today, for example, I am tired because I didn’t sleep well last night and I have significant aches in the lower half of my body due to spending a good chunk of Sunday working in the garden. Working and socializing with only fatigue and muscle aches is manageable, so I can continue on with my schedule as planned, with the addition of stretching (for the muscle aches) and making sure to hit the sack early (for the fatigue). If I judged the situation to be unmanageable, then I would have to start cancelling things.
So, each morning, and throughout the day, I do this little assessment. I check how my body is doing and whether it needs something that I can supply (water, ibuprofen, a nap, to eat only yogurt, etc.). I don’t take things for granted. I pay attention to all the different subsystems and try to keep them running as well as possible. And, on those occasions when my ministrations fail, I put the whole system to bed.
In a way, managing an illness is like running a household, or a company. It’s just a different kind of multitasking that goes on constantly in the background while the person with the illness is doing her job, pursuing her hobby, socializing, attending to her family, and so on. Part of running that company well is making smart plans (e.g., not over-scheduling and making sure the highest priorities are attended to first) and, then, being willing to change those plans if and when necessary.
Falling Down the Rabbit Hole: The Chronic Illness Experience
The other day, one of my chronically ill clients said to me, “My goal is no longer to get better; it’s to learn how to live well the way I am.” This was a big moment.
In the first years of a chronic illness, people spend a lot of time working with doctors, trying to figure out what is wrong with them and how to understand it and fix it. This makes sense. Sometimes when we get sick, medicine can help us get better. On the other hand, sometimes what has happened is that our body and our life has changed forever. Five years into her illness, one of my clients said, “I can’t believe that this is the life I have now. It’s like I fell down the rabbit hole and entered a whole new world that doesn’t even seem real.”
When people become ill, they are faced with a cascade of changes and losses that can be utterly overwhelming and very difficult to face. They may lose body parts and functionality, friends, career, their old lifestyle, financial and social status, independence and mobility, a sense of efficacy. Even writing this list feels overwhelming.
On the bright side, once a chronically ill person gets to the point of wanting “to learn to live well the way I am,” he/she is on the way to less suffering, anguish, unrest, and self-loathing, and more authentic relationships and life satisfaction, and a greater sense of contribution and meaning.
Some things from a chronically ill person’s “old life” still remain–like certain friends and family members who have had the guts to stick around and certain core personality characteristics–but a lot of the task of the chronically ill person adjusting to his/her new situation truly ends up being a process of saying, “okay, it appears that I now live in this completely different world down the rabbit hole; let me figure out how best to get on in this strange new world.”
If you find yourself in this position, there will be no denying everything you have lost. It can be heartbreaking acknowledging it all.
On the other hand, once you learn how to live in Wonderland, you may find that you can understand things, enjoy things, and do things that you simply wouldn’t have had any idea about in your old life above ground.