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.)

Self-Help

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.

Festina Lente

I have a love-hate relationship with the phrase above (which translates to "hurry, slowly," should your Latin be rusty). I love its elegance: in two words it sums up a state of grace I've rarely experienced. But I hate the smugness of its brevity. Imagine imparting this wisdom from a vantage point of perfect calm to some poor panicked slob running around in circles--or, better yet, being the poor panicked slob yourself--and I think you'll see what I mean.

I'm finding I have the same relationship with a lot of the terminology floating around to describe my symptoms. Take one of my current favorite phrases, post-exertional malaise. I felt a thunk of recognition when I came across it for the first time. I knew exactly what it meant: the weird and frightening disproportionate exhaustion that appeared without warning, the sick feeling as if my chest had gone hollow and metallic that had nothing to do with normal tiredness. How wonderful to be able to describe it so succinctly! How reassuring to find it has a name!

But, happy as I am to have found the phrase, I do have an uneasy relationship with it. Clinical economy has its price. Saying "I'm experiencing post-exertional malaise," or, even, "I find the post-exertional malaise I'm experiencing distressing," tidies up the messy reality and, alas, sounds more than a bit pretentious. The name transforms the experience, making it less frustrating and scary and pervasive than it is in real life; the phrase describes a discrete phenomenon, but when you know that running for the bus or moving a heavy box or even having a bad day at work might trigger a collapse, the fear of it becomes a constant presence.

Overall, though, I think the benefits outweigh the cost. I recognize the malaise more easily now that I have a name for it. When I first came across post-exertional malaise, I identified it as "that problem I have at the gym." Now I've come to realize that it's also a problem in my everyday life. As my energy dropped over the past year, I cut more and more items from my daily agenda, but continued checking them off at the same fast clip. Rushing out the door to work and pushing through until I came home left me too tired to do much else; cooking and cleaning became luxuries. Slowing down is helping a bit with that, although the apartment is still far from clean.

I also borrow a certain confidence from dealing with a named symptom rather than just my own experience of it. Other people have had this; I'm not just overreacting to a bit of tiredness. Other people have had this; it's probably not fatal. Other people have had this; I can learn from their experience. I'm more willing to talk about it and accommodate it, knowing that the definition is there to back me up.

So love-hate it is, and that's just fine. "Post-exertional malaise" may never come trippingly off my tongue--but it's there if I need it.

New Start

If you're joining this story in progress, you may not know that I've been struggling with my health over the past year. I had mono, then a lingering respiratory infection, and then some odd neurological symptoms that may have been a reaction to an antibiotic. Fortunately, I've come through all those illnesses, confirming in the process that I most likely don't have anything life-threatening or horribly degenerative--but, unfortunately, I haven't regained my energy. I wake up tired, and get progressively more so as I go about my day.

I'm starting up this blog again for two reasons. First, I've been terrible at keeping everyone except a handful of people up-to-date. (If you're among the perfectly lovely people I've neglected over the past year, I hope you'll accept my apologies, and know that I miss you. I also hope that you'll get a personal apology sometime soon.) Second, I want to have a place to record what happens as I start to make changes in my life to try to manage my energy more effectively.

I've kept this separate from my other blog so that those who aren't particularly interested in the Perils of Christine don't have to slog through all these details to get to the fascinating reports of presumed break-ins and ant invasions chronicled there. After a long internal debate I've decided to put a link on the other blog that leads here, and to leave the link to my profile (and real name) intact. I do feel a little shy about making this so public, but it would be silly to post anything particularly private on the internet in the first place--and, well, it's hardly a secret that I'm tired.

Favente Fortuna!

What's better than Google? Visit http://www.google.com/intl/la/ to find out. (Special note to James: merci, petit!)