owning it

I’m afraid I’m getting worse about responding to email in a timely manner. There are people who reached out to me months ago (or even longer) about dysautonomia or backpacks or writing, who still haven’t gotten a reply from me. It’s not because I’m poor at time management, though I could stand to improve. It’s not that I don’t care. It’s that there’s not been much of me to go around.

For years now, I have deflected expressions of sympathy regarding my issues with chronic illness and chronic pain. I’ve replied that I need to get better about this or that, and that there are many other people out in the world who have it worse than I do. And that’s absolutely true. But in the past weeks, I’ve forced myself to take a closer look at my own circumstances, and I’ve had to acknowledge that what I’m dealing with is also pretty bad. Not owning that has meant putting even more pressure on myself to try harder or be more committed or invest more in any number of other areas where I feel I’m not measuring up.

It can feel like an endless downward spiral, this periodic reevaluation—backing off of goals that I’ve already chipped away at, lessening already stripped-down expectations of myself. When I’ve spoken with other who are challenged by chronic issues, this almost always comes up in conversation. The idea of what’s normal keeps changing, and often times it’s something that feels like it’s constantly diminishing. And that’s scary. Disheartening and aggravating, too.

When I last met with my GP and the topic of my continued issues with chronic daily headache/migraine came up, I admitted to her that I’ve stopped hoping for a cure and am instead focusing on management. It’s been more than two years of daily migraine headaches. Some days are much easier than others, and some days the pain escalates so high and so fast that it’s already too late to go to the hospital. (Long story, but when I’m in that kind of pain, movement—like a ride in a vehicle—is out of the question, not to mention trying to deal with lights and sound and paperwork and answering the same questions over and over again.) And this is on top of the dysautonomia, which continues to make life in general an adventure in unreliability.

I need to own this—not so I can indulge in a pity party or try to get everybody feeling sorry for me, but so I can be more practical and perhaps more realistic in my approach. For instance, I will very likely never be one of those indie authors who produces a new work of book-length fiction every month. I would love to do that! I have the ideas and the will and the drive. But when I checked in with my body about that, the answer was a big fat NO. Lately, even a single book a year has proven too much, though I’m making strides toward improving on that.

I would also like to be more reliable about responding to my email messages and not have weeks and months pass by while I struggle to eke out even minimal productivity. This is a long way of getting around to saying: It’s not you, it’s me. I’m having to accept, again, that this is how things are, and that real change is unlikely.

But I’m still here! As I can be. I’m still writing and engaging as I’m able. There’s simply a recalibration running perpetually in the background.

(And, believe it or not, when I talk about the above in conversation, I manage to make it pretty funny.)

Posted in thoughts from the spiral.


  1. I enjoyed your book, _Mars_Ho! and tried to leave a review on Amazon, but I couldn’t find a way to enter my review.
    Please let me know if there is some way I could enter a review.

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