By Erik Dolson
We were back on the boat at the end of December, planning for a New Years celebration in Victoria. The fireworks had been cancelled, or were never scheduled, but we didn’t know that and didn’t really care. We were on the boat and with friends.
Irish’ last doctor’s visit had been great. Her left eye had improved after the injection of steroid. (I held her hand, but could not watch.) While it was impossible to know if the methotrexate was effective, signs were positive even if her vision wasn’t improving much past 20/30, even with the new glasses we bought her last summer.
We had good days. We went fishing with friends from Victoria. They are gentle and kind, the sun was brilliant, the wind a little chill, the fish a no-show. But it was a lovely day finished with a wonderful lunch, and Irish and I walked the urban path a mile back to the boat holding hands.
Then came the exams at the end of January. The steroids were wearing off, the methotrexate was not working, she could tell her vision was deteriorating. Fear returned and was even more intense, as if fear itself was pissed off at being banished for the previous month.
Irish tried to be brave, I tried not to be grim, and neither one of us was pulling it off very well.
But doctor’s visits became a feared trial. At the next we learned the steroids had induced a small cataract, and her vision had degraded to 20/50.
“We need to update your correction,” I said, but neither of us put much faith in that fix. What were new glasses going to do against what was obviously sympathetic ophthalmia!? Her doctor had authorized a new (and incredibly expensive) medication, available only after everything else had failed. There were delays when the hospital where Irish is being treated failed to send required documentation to her insurance company.
Irish resolved that one herself, with afternoons full of questions, shunts, impatience on the part of factotums, tears and fears, silent and expressed. Something about “Without this I may go blind!” moved some of the right people into action, and eventually the SNAFU was corrected.
Now she gives herself a shot of Humira twice a month to go along with the methotrexate once a week. The second shot doesn’t have the same wasting aftereffects, but it’s extremely painful. Irish learned with her first shot that stomach fat was a more tolerable target than the muscle on top of her thin thigh.
Her fear was not abating, but she reached even more deeply into her vast store of courage and went to Washington D.C. to advocate for Parkinson’s reasearch funding. She worked through five grueling days, a snow storm, talked in person to her Congressman and did some good.
I was on the boat, finishing the book and getting that up for sale on Amazon, working on the boat, working out and hiding, trying not to think about the limitations that would descend if Irish goes blind. Where we would boat, if we could boat, together.
Irish thinks denial is a good coping mechanism. I tend toward avoidance, which I cloak as faith. I also seek a little distance when overwhelmed, so I can move at light speed and feel like I’m gaining on life, or at least putting distance between me and tigers trying to pull me down.
“It’s not that you avoid thinking, you just avoid talking,” Irish said. Maybe true. I’m a wordsmith and should know better, but it seems at times that putting it into words might bring what’s feared to life, or at least make it more real.
The idea of Irish blind with Parkinson’s on the boat terrified me, which is why I avoided thinking about it, and wasn’t going to lay those fears upon her.
But I flew her back from Portland to Canada when she returned from Washington, D.C., and then right into Victoria on a float plane, believing she should have as many fun experiences to remember as possible.
After a couple of weeks we came back home to the hideout in the desert of MiddleofNowhere. We settled in, I bought a computer for the boat, paid taxes, updated the novel that still had flaws in formatting. We went to pick up her new “Annie Hall” glasses, with frames quite cute and different from her first pair last summer.
The optician asked how they fit after adjustment. Irish seemed hesitant. I didn’t say anything, disappointed that they weren’t helping her more than she seemed to indicate. It was a difficult moment, and I didn’t relize she was reluctant to hope after all her upheavals.
“It’s better,” she decided at last.
“Quite a bit better,” she admitted after a minute.
Then she learned the old / new glasses from last summer, with which she had been taking all the eye tests, had no correction at all except for astigmatism. She was dumfounded. So was I. She cried with relief.
“I may have known at one time, but it got lost in all of everything else. I’d given up hope it would get any better,” she said, because the doctors who were trying to save her left eye said the damage suffered so far was permanent. But that damage wasn’t the only reason for her loss of visual acuity, maybe not even the primary one. She’s 56 and she needed glasses.
She was overjoyed with her new prescription sunglasses on the bright ride home.
The next day, I was looking down at the pond below our second story perch, mulling whether to top it off for three or four generations of goldfish swimming among cattails along the shore.
“I see fish!” Irish exclaimed at my elbow.
“Yeah, they’re right there in the reeds,” I replied, again or still too disconnected.
“No! I see the fish!” she said again, emphasizing the oh-so-important verb. She folded into my arms, we wept together.
Despite our efforts at honesty and communication, and my presence at almost all her exams, I’d really not grasped just how difficult everything had become, how her declining vision had been driving the fear and despair.
The relief and hope I heard in her voice from seeing a dozen goldfish in the pond brought understanding like the shock of a cattle prod.