Tuesday, October 10, 2006

Constant Grieving

This is the hard part of chronic illness: going through the same damn issues over and over. The physical ones are bad, but the mental ones are worse; you talk them through, maybe you work them out, if you’re lucky you get a bit of temporary solace, but ultimately nothing changes. Sooner or later, they come around again.

I keep thinking I’ve become better at dealing with my fatigue, and in terms of the practicalities and logistics, I suppose I have. I’m better at avoiding the things that trigger a collapse, and overall I’ve recovered enough to maintain a decent life with a lost weekend or bad week here and there. I'm able to plan for a future that looks far less scary than it did a year ago. Generally, I feel just as lucky as I actually am.

But in terms of the emotional fallout, I don’t think I’ve made much progress at all. The restrictions and the unexpected setbacks and the drudgery of not having enough energy are still emotional water torture. And, after two years, I’m as thoroughly bored with it as I know everyone else is. I don’t want to jump through these same hoops again, thank you very much; if I have to suffer, I want it to be new and interesting, with revelations and insights and maybe, just maybe, some resolution. I want it to be something I can tell people about without watching their eyes glaze over.

(Yep. Just call me Pandora. Of course that's not really what I want; I'll take an illness that's familiar and mostly manageable over some horrible new disease any day of the week, even if on some of those days it's not much fun.)

Monday, April 10, 2006


And there were always choices to make. Every day, every hour, offered the opportunity to make a decision, a decision which determined whether you would or would not submit to those powers which threatened to rob you of your very self, your inner freedom; which determined whether or not you would become the plaything of circumstance...


What was really needed was a fundamental change in our attitude toward life. We had to learn...that it did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead to think of ourselves as those who were being questioned by life--daily and hourly.


No situation repeats itself, and each situation calls for a different response. Sometimes the situation in which a man finds himself may require him to shape his own fate by action. At other times, it is more advantageous for him to make use of an opportunity for contemplation and to realize assets in this way. Sometimes man may be required simply to accept fate, to bear his cross. Every situation is distinguished by its uniqueness, and there is always only one right answer to the problem posed by the situation at hand.

--all from Viktor Frankl's "Experiences in a Concentration Camp" (1945)

A while ago, at the nadir of my fear and distress over being sick, I asked my doctor if she could recommend a book on managing chronic illness. I hadn't hoped for much, just a lead on something with a useful suggestion or two that wasn't too sanctimonious or too silly. I am, however, so incredibly lucky as to have a very smart doctor who understands me: what she recommended was that I read the work of Viennese psychologist and concentration camp survivor Viktor Frankl.

Frankl's Experiences in a Concentration Camp (usually published these days as the first part of Man's Search for Meaning), was exactly what I needed just then. Even though there is, obviously, a huge gap between having a chronic illness and being interned in a concentration camp, Frankl himself conceived of presenting these experiences as a means of helping people in less dramatic situations; as he says in the preface to the edition I have, "I had wanted simply to convey to the reader by way of a concrete example that life holds a potential meaning under any conditions, even the most miserable ones."

I was really taken by Frankl's concept of identifying and answering the question posed by your circumstances, but figuring out the question I was being asked was harder than I expected. Frankl makes the point that suffering, in and of itself, can be a question to be answered. Somehow, though, that didn't seem right for me. Similarly, the first hundred or two questions I came up with were variants on "How can I regain a reasonable level of health?"--and although they certainly spoke to the situation in which I found myself, they were hardly a satisfying replacement for "What can I do to save the world?"

Finally, it hit me. The question I'm being asked right now, in its simplest form, is "How should I spend my energy?" I've spent a lifetime doing things with energy I didn't actually have--which has given me a wide array of short-term coping skills, but ultimately hasn't allowed me to accomplish the things that are most important to me. I like that it can work as a philosophical question as well as a practical one.

Keeping this question in mind has been both enlightening and useful. I've made a number of uncharacteristically sensible decisions over the past couple of months with a minimum of handwringing. The most dramatic was my decision to leave the all-consuming job that was always just supposed to pay the rent, replacing it with a less-intense (and, sadly, less well-paid) job that will allow me to focus on re-educating myself. I'm proudest, though, of my decision not to overload my schedule when I returned to school this quarter. I kept it to an internet class that fulfills a prerequisite for my program and an ungraded seminar. I did feel a twinge of regret for the lovely classes I was missing out on--but the twinge was followed pretty much immediately by a sigh of relief.