Navigating by Stars

When Thing1 was diagnosed with ulcerative colitis six years ago, his doctor told us, “This is a permanent diagnosis.”

We thought we understood what that meant, but even after a year of unsuccessful treatment and the discovery that he would have to have surgery — not to cure but to manage his illness – we all had trouble wrapping our heads around the idea the concept of what a chronic illness really meant. Four years later, then one has changed his diet, his lifestyle. He’s learned to make his own appointments and monitor his own prescriptions, We think we understand what chronic means for him, but I don’t think I ever really got it until last Saturday.

For six days before, my Menieres had been remarkably inactive. I was still taking daily medication, still told myself that most of the “cure“ was due to the multiple injections in my ear. But for the last five or six days, I had so little vertigo that, the last Tuesday in February, I drove for the first time since just after Thanksgiving. I drove again on Wednesday , and then on Thursday. This was it. I was cured. I could plan for the next year of school at a district that requires a two hour daily commute. We can think about a vacation with a lot of walking.

And then a few days ago it happened, and I started to understand what Thing1 figured out the minute he learned that his UC wasn’t getting better and that he wouldn’t be going to college next week, that he would be dealing with it for a long time.

Saturday, I was watching the clouds roll in for another storm, feeling my ears pop and crack with the change in barometric pressure. I’d read other people with Menieres say the same thing and knew an “attack” was building. As the Big Guy and I made plans to go to breakfast while Thing2 was at his weekend job, I reluctantly handed him the keys, not knowing when I’ll be able to take them back again.

There’s very little good in what’s been happening, as far as I’m concerned, but the few only bright spots have illuminated the my way forward. That morning, as the world began to spin and rock again, I tried to focus on my memories of Thing1’s stalwart examples of acceptance and determination for the past six years. Those memories and the reminder that chronic often means permanent suddenly helped me truly understand my oldest son who, not for the first time, has often been my Northstar in learning how to navigate life challenges.

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