by Jane Miller
30 September 2017 (Two weeks ago)
I fell asleep last night as silence enveloped the treehouse.
And now I sit in silence. The sun is barely peeking above the eastern hills. The house is quiet, the world still asleep. Time waits, though, like a friend pausing to sit with me as I take stock.
It was a day of changes, yesterday was.
The last appointment for my right eye came at the end of very long day at the end of a very long 10 months. A quick check by the doctor who replaced Dr. Perry. “Looks so good,” she repeated as she took pictures and sent me on my way. Seemed anticlimactic after all I’ve been through. Where are the trumpets? The tiara? The congratulations?
I am alive. A little broken, a little afraid, a lot changed, but alive.
Maybe a party would be premature, though, since the ramifications of that devastating fall continue. The diagnosis of sympathetic ophthalmia was verified yesterday, first by Dr. Lin’s fellow, Dr. Choi, then by Dr. Lin herself. Not an infection. Not some obscure inflammation, but an even more obscure inflammation with an incidence rate of .01 percent. My body is attacking my left eye like it’s a foreign object. The denial and compartmentalization that have kept me going through job losses, Parkinson’s diagnosis, five surgeries, death and loss in the last four years have deserted me. For despite Erik’s feelings about my romantic imagine-a-different-world tendencies, I am also a realist. The good news here is that the bad news is not as bad as it could be, but there is a lot of bad news.
The damage to what was my perfectly good left eye is not as bad as it could be because I pushed and we caught it early. I shouldn’t have had to push so hard; they should have listened when I asked if what was happening to my left eye was related in any way to my right. “Oh no,” they denied, “there’s no relationship.” So here we are.
The optic nerve is damaged, but it’s only “mild.”
The uvea and vitreous (middle of my eye) have been damaged by the inflammation, but it might not be permanent.
The retina is intact and is likely to stay that way.
The chance I could still go blind is slight.
See what I mean? Realist.
The list of medications, some of which could last a lifetime is long and complicated. The dosing schedules will require a spreadsheet, alarms, and reminders. The side-effects, which could be serious, will need careful monitoring.
To the daily medications I take for Parkinson’s and fibromyalgia, we are adding high doses of prednisone for the next four months. Weekly injections (that I have to give myself) of the immunosuppressive drug, methotrexate, for at least three years. Daily eye drops (these I can handle). Daily Aciphex to prevent the prednisone from causing a recurrence of ulcerative esophagitis. Calcium and vitamin D. Prescription-strength folic acid. I started on the spreadsheet and had to stop. Overwhelmed a bit.
At the end of last November, I asked Erik if he could still love an unemployed miscreant. Early December, I asked him if he could love an unemployed miscreant with only one eye. Last night, as we were winding down from the trip back and forth to OHSU, I asked him if he could love an unemployed miscreant with only one eye – who has to take immunosuppressive drugs for the rest of her life.
He joked about the list growing longer, that we’re pushing the envelope here. Then he was silent.
He will not say the words when I most need to hear them, and for once, the romantic in me has no resources left to create a world that should be far different from the way it will be.