On Not Being Productive

With this new discovery of the possible connection between the XMRV retrovirus and  Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), I am struck by the magnitude of the desperation for a biological explanation in the CFIDS community. All of us with CFIDS are so excited. But it’s a retrovirus! Like HIV! And we don’t know how it is transmitted. And retroviruses don’t go away. Ever. They hide out in the body and wreak havoc. Strangely, however, even this sentence relaxes me: “They hide out in the body and wreak havoc.” Because havoc has been wreaked. And now there is a suspected culprit. And doctors will have to stand up and pay attention.

I want an answer. An explanation. I want something to hang my hat on. I want it to make sense. I remember how relieved Alice James[1] was to get a diagnosis of breast cancer. Breast cancer! A death sentence:

To him who waits, all things come!….Ever since I have been ill, I have longed and longed for some palpable disease, no matter how conventionally dreadful a label it might have, but I was always driven back to stagger alone under the monstrous mass of subjective sensations, which that sympathetic being “the medical man” had no higher inspiration than to assure me I was personally responsible for, washing his hands of me with a graceful complacency under my very nose. (Diary, pp. 206-7)

If I had a retrovirus I could say, “Well, the reason I am so tired is that I have a retrovirus. I should rest.”

And speaking of that, of rest and the need for it, versus the drive to productivity, I was thinking, this afternoon, about how tired I was, and about this newly discovered retrovirus, and I was thinking about how much I want to do in the world, and feeling frustrated by how little of it I accomplish, and I believe I was feeling a little angry at myself, a little self-reproach, and then I had to remind myself that I’m sick. I always have to remind myself that I am sick. Otherwise, I take it on myself, this burden of not getting enough done. I think there’s something wrong with me, myself, with my essence, rather than something wrong with my body. And I thought about the passage that Charlotte Perkins Gilman[2], my other soul sister wrote:

After I was finally free, in 1890, wreck though I was, there was a surprising output of work, some of my best. I think that if I could have had a period of care and rest then, I might have made full recovery. But the ensuing four years in California were the hardest of my life. The result has been a lasting loss of power, total in some directions, partial in others; the necessity for a laboriously acquired laziness foreign to both temperament and conviction, a crippled life.

But since my public activities do not show weakness, nor my writings, and since brain and nerve disorder is not visible, short of lunacy or literal “prostration,” this lifetime of limitation and wretchedness, when I mention it, is flatly disbelieved. When I am forced to refuse invitations, to back out of work that seems easy, to own that I cannot read a heavy book, apologetically alleging this weakness of mind, friends gibber amiably, “I wish I had your mind!” I wish they had, for a while, as a punishment for doubting my word. What confuses them is the visible work I have been able to accomplish. They see activity, achievement, they do not see blank months of idleness; nor can they see what the work would have been if the powerful mind I had to begin with had not broken at twenty-four. [The Living of Charlotte Perkins Gilman, p. 98.]

Ach! The heartbreak! I know, Charlotte! I know!

And I thought of the Dylan Thomas quote,

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

He was talking about death, but the poem inspires me to continue to fight against all of the constraints of my illness, to make something of myself, to bring something to this world, to leave something behind me when I go.

The life coaches have a thing they suggest. They suggest that in addition to writing a list of things to do every day, that at the end of the day one also write a list of things accomplished. I think this is a grand idea.

I got completely exhausted today at work, but I helped six people negotiate their ways through their own challenging circumstances. I scheduled an appointment with the podiatrist and called the library to renew an interlibrary loan book. I kept up on my email and Facebook. I cooked breakfast and lunch and dinner. I came home and did some writing. This, for example. And I cut my nails while having a good laugh with Marina about the challenges of our illnesses, and about the little voice that always says, “You should be doing more, and doing it better.” The voice that discounts the illness.

She told me about a 14-year-old girl with Marfan syndrome[3] who has become an outspoken activist in the community. She and her mother were boarding a plane when the flight attendant told the mother she was only allowed one carry-on. The mother explained that her daughter is disabled by Marfan syndrome and is not able to lift more than 10 pounds, so she was carrying both of their bags. The flight attendant was unswayed. In fact, she called security and had mother and daughter taken away.

As Marina was telling me this story, I interrupted to say, “Push her off the plane!” I meant the flight attendant. And I meant when it was in flight. I hated that flight attendant.

Talking it over with Marina, however, I realized once again that Jung was right about the shadow self. That flight attendant represents a part of me that I hate: the narrow-minded part that discounts my disability and tells me I need to do better at doing more.

[1] Alice, the sister of the writer Henry James and the philosopher William James, suffered throughout her life with neurasthenia, a 19th century illness that caused symptoms similar to those of CFIDS.

[2] The 19th century author of the feminist classic, “The Yellow Wall-Paper,” who also endured neurasthenia all of her life.

[3] A genetic disorder that causes weakness in the connective tissue, resulting in heart problems and vision problems, among other things.

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  9 comments for “On Not Being Productive

  1. Julie Laffin
    April 11, 2010 at 10:26 am

    awesome post. it spoke loudly to me. very moving. xo, julie

  2. Lowell Lunden
    April 11, 2010 at 12:47 pm

    “One Canary Sings” is the perfect name for what you are communicating. You are a very noisy canary in the coal mine warning those who need to hear.

    Though you write of your frustration with not accomplishing much, you are underestimating your impact with others.

  3. Jennifer Lunden
    April 11, 2010 at 12:53 pm

    Thanks, Dad.

  4. donna kuhn
    April 11, 2010 at 2:13 pm

    you are lucky to have a supportive dad and he is right to be proud of you.

  5. Jennifer Lunden
    April 11, 2010 at 2:36 pm

    Thanks, Donna. I am lucky to have a supportive dad. Although he has always been energetic and happy and can’t fathom what it feels like to have my body, he has always tried to understand. When I was first sick, back in 1989, he used to send me clippings from the newspaper about chronic fatigue syndrome. He still does.

  6. Glenna Goulet
    April 11, 2010 at 7:19 pm

    rite your message or comment here.

    keep up the great work Lunden. Writing is very therapeutic. You are making a difference. Like the story above, I mostly feel that I’m not accomplishing much of value (simply because I don’t have a nice fat salary like everyone else I know). But my husband constantly reminds me what a difference I am making in people’s lives with my volunteer work. He reminds me of the movie “It’s a Wonderful Life”. If I had not been born…..well, you know the story. Everything happens for a reason, I guess.

  7. Jennifer Lunden
    April 11, 2010 at 7:35 pm

    You’re a huge asset to our MCS group, Glenna. And a sweet person to boot. I’ve come to believe that none of us has a clue how much we bring to the world, just by being ourselves.

  8. Valentine Hart
    April 23, 2010 at 4:15 pm

    Though it was never suggested to me by a life coach, or by anyone for that matter, I write a list of things to do every day. I use scrap paper, folded twice, and that yields me three days’ worth of lists. I put a check next to each thing done. It’s a pretty good day when I’ve done almost everything on the list; very rarely do I accomplish everything on the day’s list, but whatever is undone today can usually be done tomorrow, or the next day, or the next — I don’t obsess about it.

    This may be obsessive: I keep a folder of all my old lists. Sometimes I can find forgotten names or phone numbers. Every once in a while I take a bunch of the oldest lists and scan them, bringing back to memory events and people I was involved with one or two years ago. Then I toss them.

    Daily lists are one thing, but maybe not enough. I’m contemplating starting a list of goals for every season (winter, spring, summer, fall) that have to do with writing and reading and teaching, or anything intellectually creative. This could be helpful in thinking long-range and keeping myself moving forward in projects that matter to me.

  9. Jennifer Lunden
    April 23, 2010 at 7:35 pm

    I’m a big list-maker, too, Val. It comforts me to read that you keep your lists. I started doing that 2 years ago. I’m afraid it’s a little OCD of me. Once in awhile, I’ll find an old list, and I’m always relieved, and even surprised, to find that I actually did get everything done, eventually, even if I didn’t get it done that day, or the next, or the next….

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