this is not a sad story

I do not remember the last time I felt 100%. These days, even days I feel good, even moments where I might even feel great, there is always lingering pain somewhere, a heart rate that won’t go down, acute tension or nausea. These days, I always have some amount of pain. But I’ve been feeling good lately. Relatively, anyway.

I grew up in a house with early onset chronic pain and a childhood full of puzzled doctors, symptoms that didn’t quite fit this or that box, and this was debilitatingly frustrating. I wanted answers, I wanted solutions. And then last year, I kept getting sick, was put on medical leave, and I gave up. I accepted. There will be no answers. I will probably feel a little shitty most of the time for the rest of my life. I will probably never feel what I think of as 100% again. My mission had to change: I needed to stop fighting my pain and start making friends with it. The goalposts of 100% had to move. So that’s what I’ve been doing the past six months.

From the outside, that might sound sad. A close relative that I spent time with during my medical leave kept insisting that there had to be a reason, that there was some stone left unturned. There is a certain amount of faith in Western medicine that those who are not perpetually being shuttled from specialist to specialist are allowed to have, that those who have invested deeply in the system financially or educationally need to have, that people like me—concrete evidence, if you will—pull at the loose threads of, and so we are ignored. Our insistence that yes, we’ve tried this, and no, the doctors ruled that out cannot conceivably be right. So we begin to look elsewhere and shift our relationships with those who grip tightly to the boxes that cannot contain us. We start making our own boxes.

With chronic pain or chronic illness, certain things become impossible or possible but incredibly stupid. A 40+ hour workweek, for example, becomes untenable. Making plans far in advance is possible, but with the caveat that following through on those plans may not happen, or might be a terrible experience for everyone involved. You learn quickly that whether you mean to or not, your pain will become other people’s problem and some will definitely deal with it better than others. You will feel guilty and resentful. You will grieve your healthy body and every activity you thought you should be able to do, every goal you thought you could push towards. You will understand that the only way forward is an entirely different path than the one you thought you would take.

You will also learn that there are angels. You will also learn that you are not the only person on earth that is willing to hold someone else’s pain for awhile and that there are actually plenty of people—strangers even—who will hold yours not out of obligation but simply because they are good. You will learn to rest and find space where your pain is not front and center. You will learn to listen to what your pain has to say past its screaming and yelling. You will hear your pain whimper and you will tend to yourself. You might even learn to prevent your pain’s full-on temper tantrums most of the time. You will feel grateful to the point of ecstasy.

The past couple of weeks have been good—close to my new goalposts, even. My limbs feel connected to my body. The desire to constantly be asleep has started to dissipate, but I have also been going to bed earlier. I’m able to concentrate for longer periods of time. Socializing feels less like a chore. I’ve been going to see more art. Something in my meditation practice finally clicked and it just happens, and sometimes I even find myself wanting to spend more time in that strange quiet space. I can linger in uncertainty longer. The pain is still there, but it inserts itself less into my moment to moment existence. I allow myself to attend to it in moments of quiet, and for now at least, that seems to be enough—if only because I’ve created more of those moments where I can return to myself.

I hope you can create those moments for yourself too.

All my love,
Kara