As we are getting ready for bed, my husband turns to me and comments, “It must be so hard, seeming fine to everyone, but hurting so much every day.”
“Yes,” I say and pause momentarily before adding, “I try not to complain.”
I try not to, just like I know he tries not to complain when I cannot carry my backpack on a vacation we had looked forward to for nearly eight months, when I cannot help drive much during the road trip because it hurts too much to sit up to drive, when I cannot help with our home-improvement projects and he is stuck doing more of the work, when my medical bills mean that we cannot order pizza on a night we’re both exhausted. Though I feel gratitude for his geniality, I also feel guilt for depending on him to understand something that is so invisible and so devastating. As I wrote earlier, though I seem fine, I am still not fine.
No one really wants to hear incessant health updates with no improvement. Few people know that I lie awake at night trying to find a position that doesn’t feel like I lost a bout with a medieval inquisitor or that every moment I bend over to tend the garden is a moment of joy and increased pain. My husband both knows and doesn’t know this. He knows when I come into the house from grocery shopping without lugging a bag of groceries to instantly ask if I’d like him to unload the car and put away the groceries (he doesn’t assume I can’t do it, and I love him for that among so many other things), but he hadn’t realized until this week that I lay awake feeling as if someone were standing on a dull knife on my back.
Sometimes, as I do now, I feel hopeless no matter how much I try to focus on the positives in my life, of which there are many. Instead, like a glacier calving chunks of herself into the sea, I lose pieces of myself that I do not know I can recover. As the world heats up around me, I worry that every chunk lost is gone forever, mingling out in the ocean with lost memories and dreams. I worry that everything I love now is just one more thing that I will lose. It is just a matter of time until I cannot check on my bees because it is too painful to bend over and inspect the frames, even if my husband lifts and moves the boxes for me; it is just a matter of time until I cannot ride my bicycle to work anymore, even though it hurts so much less without that awful hill to climb on 13th street. As I write yet another check to the doctor, it is just a matter of time before I add to my graveyard of lost things. I wonder in these moments of painful weakness whether I will cry tomorrow when I ask if it’s realistic to have a child or if I would be bedridden by the pain. After all, I still cannot walk my dog, and he has long since stopped asking.