By Jane Miller
And off we went, Erik and I. Not looking back. Not worrying about the “what if’s” or the “what abouts,” but facing each day as we found it.
We sailed over 2,000 nautical miles. I had the third surgery for my face. We came back to Sisters for the fall and have spent our time with family and friends. Organizing businesses and doing paperwork, working outdoors, exercising, walking, hiking. Planning.
The changes to my left eye, the one that can see, started in early spring. Hundreds of floaters that looked like the murmurations of starlings Then came the flashes of light. The headaches. The difficulty seeing, the near impossibility of reading.
My third appointment for this was going to be with Dr. Davis on October 31, but the rate of change was scary so I moved it to as soon as they could fit me in. September 22
Dr. Davis said my eye was different. There were signs of inflammation. Blood in the vitreous. Thinking it was a retina issue, she quickly sent me up to Dr. Taylor in Retinology. Photos. Imaging. Ultrasound. Then the quick referral to Dr. Lin, expert in the “uvea,” the middle part of the eye..
She discovered more issues, damage to my optic nerve, inflammation, changes that could have vastly different causes. Infection. Inflammation. The worst, though, was when she said “indications of ‘sympathetic ophthalmia.”
Eyes are weird. When my right eye exploded, proteins were released into the bloodstream. The body can ignore these, or after weeks, months, or years, it can think they’re foreign bodies and attack them. Preventing this rejection was one of the reasons I decided to go with complete removal of my right eye – in addition to the fact that I would never see out of it. The surgery did not completely eliminate the potential for rejection, but it dropped it down to miniscule. Seriously, .01 percent.
Maybe not minuscule enough..
Dr. Lin ordered a blood draw and chest x-rays to rule out infection (e.g., syphilis, TB) and other inflammatory causes (e.g., sarcoidosis) and rule in the likely fact that my body is rejecting my left eye. And she told us the plan for what we face should it turn out to be sympathetic ophthalmia.
This is the only eye I have left. The course of action is justifiably fierce.
I started prednisone drops for my eye every two hours when I’m awake. Next will be systemic prednisone and immunosuppressive drugs. If I go into remission, this will last three years. IF not, it could last the rest of my life.
So it’s back to Portland next Friday to see Dr. Lin.
I am not normally a “zen” kind of person. A romantic? Yes. A worrier? Yes. A planner? Yes. A control freak? Oh, yes.
So why am I so calm?
Erik and I have done everything to prevent this. Difficult decisions. Painful recoveries. Always pushing me to test my boundaries and be as independent as I could be. We made the best decisions we could, but we were at the mercy of my injuries.
Now there is something we can fight. There are drugs that can help. There are things we can do. It may be that the damage to my left eye will stay the same or worsen. It may that I’ll end up blind.
It may be that the progression can be halted, reversed a little, even. And right now, that’s my focus.
It will be what it is. I will be what I am. And together, Erik and I, and those who love us, will fight this.