By Erik Dolson
“I have been asked to participate in a forum on Parkinson’s in Washington, D.C. next month,” Irish said one morning in February. “They want us to talk with members of Congress.”
“That’s wonderful. You’d be great. I think you should,” I replied.
“They’re willing to pay travel expenses for me and a caregiver. Want to go?”
“Um, no. A hotel room for five days isn’t …”
“Three days, we travel there on Sunday and back on Thursday…”
“Oh, well then, three days in a hotel and throw in two days of airplane travel? Um, no. And I really can’t take off five days right now.”
The disappointment in her eyes sliced like a paper cut. She didn’t say anything as she turned away, but didn’t have to.
Really? I couldn’t take off five days? Of course I could.
But I didn’t want to, because the idea of spending three days in a hotel and two on a plane repelled me. I did need to get work done, too, writer work and boat work and car work and real estate work. But some I could have done in a hotel.
Maybe I’m just selfish and didn’t want to go to the effort. I’m sure that was the thought of some who said, when she told them about the trip, “Well, Erik is going with you, right?”
“No, actually. He’s not.”
The nicest of them responded, “How do you feel about that?”
I spent hours chewing on this, and changed my mind at least seven or eight times. I tried to be honest with myself. Sure I could go. It’s only five lousy days. She would do the same for me, times 20.
But she didn’t need me to go just so I could give her emotional support, or stash bags in the overhead compartment on the plane, or schlep bags through the airport. No question if I was there to do these things it would be easier. But is that a good thing?
Early in her recovery, after the fall that smashed her face and resulted in the loss of her right eye, we went out to get the mail in town, three miles away. As we neared the car, I gave her the keys and walked around to the passenger side. She resisted, thinking she could not drive.
“You’ll have three eyes looking out for you, not just the two you had before. Take it slowly, we’re not going far, I’ll take over if you really can’t.”
She could, and she did. She doesn’t drive at night, and she doesn’t drive into the sun during a long afternoon, or in a blizzard, but she gets around. She can get groceries or the mail or fabric she wants to sew into pillows. She can go by herself.
The more I do for Irish, she will become less capable, not more. She will become dependent. That won’t be good for her, it won’t be good for me.
Two months after the fall, she climbed back aboard this boat where she had her horrific accident. I didn’t know if she could, but I acted like she could and we’d just deal with whatever happened. I did not want to dramatize a moment already laden with drama.
It was tough, for each of us. But she got back on board. We’ve put a thousand miles under the keel since then.
Parkinson’s is a progressive disease. We can both tell it’s getting worse, though she tries to hide that from me, but the meds seem to have it mostly under control. Her body is also attacking her good eye, but the situation is almost “stable.” At least not much worse than her last visit, though steroids may be causing a cataract.
But she could be less stable at any time and one potential risk is that she becomes afraid to do things, especially if I always stressed risks instead of rewards, or if I jump in and do things that she can do because it would be easier, leading her to believe she can not.
She wrote “Erik pushes me toward independence. I still drive because of him. I push myself because of him. I am stronger because of him. But those pushes result in anxiety. Do I have the ability or am I just willing myself to do it – no matter what the “it” is? What if I push myself too far in a way that could easily result in disaster, not just inconvenience?”
Yes, what if. There are a lot of what ifs, and with those, anxiety is the enemy, not a defense. Unstated, of course, is her fear that I will just up and disappear some day. But I’m still here.
Being a caregiver was not part of the raw environment where I was raised. She came from someplace else, and she has faith. She believes in me more than I believe in myself. “I trust that the love that has seen us this far will continue to do so…” she says.
She also wrote that the decisions we make “ … might not be the same as other couples would make. Their decisions might not be right for us. But decisions have to be made.” Yes, they do. And we won’t always agree.
She says that we decided together that she would go to Washington D.C., but that’s not exactly right, though she believes it is. She decided she would go and lobby for Parkinson’s funding, with my urging. I decided not to go, against her wishes.
We did agree she would arrange for the help she needed (she didn’t need much), and would take it slow, “Because after all, how do you know you can succeed if you don’t try?” she wrote. Exactly.
She arrived back in Portland last night, exhausted after an extremely successful trip. She has been an amazing advocate, posting to Facebook and urging all who are in her wide, wide circle to write letters of support. Representative Walden was on the same plane home and stopped by her seat to say hello, and thanked her again for bringing her perspective to Washington.
I think she made a difference and am immensely proud of her.