Writing in the Dark: Medical Update

I wrote this bit on quarter pieces of paper while lying in bed one late morning, the blackout curtains closed against the day. It hurts my eyes less to write by hand in the dark, but I can only do this trick when I wake, before overwhelming pain and exhaustion erode the day.

My symptoms continue to worsen. I have come to accept that these medical issues are not a bump in the road; these issues are the road.

My ability to see remains dim, both literally and figuratively. The pain, the cloudiness, the blurriness, the inability to use my eyes without great suffering intensifies, like a bad mood gone rogue. My doctors have entered the phase of experimental drugs to cure me, and though I am grateful for all possibilities, it feels like throwing spaghetti at the wall.

I can no longer drive. I can no longer trust my brain.

This uninvited guest, as the Sufi poet Rumi might have named my medical woes, has moved into my mouth, my stomach, my joints, my skin and even my brain.

A new fancy doctor has blamed these issues on various things: my allergy to the eye drops, my eye infection, and the fact that my body was too hospitable to that virus I got in my eyes which then flooded my body—sort of like the way healthy people get covid and then have unrelated parts of their bodies lay in ruins.

It is a relief to have a diagnosis for my inability to think clearly, blinding headaches, skin rashes, mouth sores, painful joints, low-grade fevers, chronic exhaustion and eye issues, but the side effects of the experimental drugs have even added more to my overburdened body.

These latest meds have already made eating easier and my brain opened a small window so I might think and write here in the dark. According to research, this medicinal goodness will improve, over time. There is hope.

I will figure this out. I will. Really.

There must be a way to health. I research natural alternatives to this medication that is used to manage rheumatoid arthritis and cancer before the people taking it give up because it also causes alopecia, malignancies, full system infections and so much more.

It’s tough to stay open to medicinal possibilities when my hair is falling out. I have a choice, take the horrific meds that might fix me or not take said meds to save my hair.

No alternatives.

I search again.

I discover a herb used in Chinese medicine that has been well researched and shown to work as well as my meds, and even better when taken with my meds == without additional side effects. Google helps me locate an affordable (!) Chinese medicine doctor in China Town, NYC, who can affordably (!) diagnose me, write a script (!) of personalized healing herbs and then fill that script.

No travels this summer. I will be splurging on Chinese medicine.

My eighty-year-old neighbors stop in for a visit; I am one of them now. We complain about issues with our eyes and general pains. We have so much in common now that my time machine added twenty-odd years to my life. One neighbor teaches me how to call the local bus for disabled people to get a ride to doctor appointments.

Really?

I am encouraged, until the very organization calls her cell phone while she is sitting in my living room and tells her that they won’t be able to take her to her doctor’s appointment, after all.

She graciously hangs up then turns to me and says, “I reserved the bus four months ago and then called every two weeks to make sure they had it on the schedule.”

I nodded and told her that it wasn’t her fault.

And it wasn’t.

My paid sick time is running low. I will lose my salary and health insurance as of September 1st, unless I return to work.

I continue to grasp at straws, and know it is possible that I will have to walk away from life as I know it if I cannot work. As horrifying as this sounds, I will pretend it is a new adventure.

Though these issues started from an injury at work, based on human error—not mine, my anger has dulled. I don’t know what will happen next, but for now, I am enormously grateful for this house, this room, this bed where I can lay writing in the dark, if only for a few more months.

 I remain open to the possibility that life will remove its sickly mask and shout, “Psyche! Just kidding. You’re not sick. I so got you this time!”

But for now, my eyes speak up and put their foot down that I might stop forcing them to—focus. And in this small moment when my brain is working, pain wins again.

And so I stop. 

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