"The camera is an instrument that teaches people how to see without a camera." - Dorothea Lange
Friday, August 14, 2009
There is a bridge - the Broadway Bridge - that crosses the Willamette River in Portland. It’s just a few blocks from our building. It would have made a great addition to our morning walk. But Eddie couldn’t get himself across it on foot. Believe me, he tried.
Shortly after we got married, just when we were starting to fantasize about of all those fun and adventurous things we’d like to accomplish together in life, he started doing unexplainable things like falling down, speaking with a slur, having trouble swallowing, not being able to keep his eyes open (no, this wasn’t after throwing back a few beers at the Brathaus Bar and Grill) and well, stuff that seemed very unusual for a healthy twenty-six year old guy.
After a long and frustrating two years of being told everything from “it’s all in his head” to getting misdiagnosed and being put on meds that almost destroyed him, Eddie finally checked himself into the hospital at the University of Michigan (with encouragement from his sister, who lived in Ann Arbor.) A smart, young and very sympathetic intern took our case under his wing and, after two weeks of grueling tests and a lot of poking and prodding, finally gave us the answer we needed: Myasthenia Gravis.
That’s not necessarily something you really want to get as a diagnosis, especially when you are young and spirited and have lots of plans, but at least it was a diagnosis. It had a real name and real meds to go along with it. It gave us the opportunity to finally deal with the fact that our life together was actually going to be a little different from the one we had envisioned.
Tough news for a couple of young newlyweds to digest.
(No need for violins, though. It’s thirty years later, and we are still very happily hanging out together.)
The bridge episode in Portland simply reminded me. I need reminding sometimes because the medications Eddie takes enables him to live a fairly normal (yeah, I know, the word is open to interpretation) life.
Eddie certainly doesn’t need reminding, though. He endures a myriad of daily discomforts and challenges that could send him spiraling into despair and self-pity at any minute.
For example: double vision. Which has worsened this year. That’s why he couldn’t make the trek across the Broadway Bridge. The way he explained it to me was that he couldn’t tell with certainty what was the edge and what was not. And when that happened he got disoriented, which fed into instant weakness, which landed him in a state of feeling totally out of control. That’s pretty scary when you’re way up on the air with cars and cyclists whizzing by and a cold body of water lurking below.
I decided to write about this, not to get sympathy for him or us; we are quite fine, thanks. I am sharing this because Eddie’s chronic illness and the way he has chosen to deal with it all these years is something that, well, simply inspires me.
Not to get all Pollyanna on you. It hasn’t been easy or fun or pleasant at times. We’ve done a lot of work on it in doctor’s and therapist’s offices. There have been spells when I have been less than understanding or patient or even very nice about it. Like, how dare you inconvenience our lives like this, Eddie?
He has own bad days of feeling sorry for himself, but I can tell you those are few and far between. What he does instead, and this is how he inspires me, is this: he finds compromises or just makes up new ways of doing things.
Okay, I know there’s no other way to climb Mt. Kilimanjaro than to just do it. But rather than plan that particular vacation adventure, he has managed to design others that are exciting in their own right, for different reasons.
He has developed the art of finding alternate routes.
We never made it over the bridge on foot together. Nor were we able to complete the hike at Ecola State Park that, for a short distance, runs along the edge of a cliff overlooking the Pacific Ocean. Add up all the other fun stuff we did manage to do or even just talk about, and you’ve got those two things beat - in spades.
What’s most inspiring about Eddie, though, is that, despite his limitations, he has made it his business to help others. His sense of doing the right thing ALWAYS makes him the go-to guy for ethics questions. The shirt off his back? Try the whole suit. Here’s a guy who never, ever thinks of himself first.
And that would be so easy given all the things about himself that he DOES have to consider just to, say, navigate his way through a day.
So, here’s to my husband, who has taught me about what is important and what is not, who supports me one hundred percent in my own endeavors (even when he cannot physically participate), who gives of himself tirelessly (even when he feels like he doesn’t have much more in him to give) and who might get over that bridge one of these days (but will most likely find an interesting detour.)