Tuesday, December 9, 2014

On Being Strong...

Awhile back, I wrote this post about having my hands full. Then, I was sure I'd reached the limit of what I could carry. It was a metaphor, of course, for dealing with Ren's unexpected back issues while working full time and parenting three young kids who happen to have a whole host of allergies and developmental challenges.

It turns out, I had no idea what I was talking about in that January 2012 post. Because after I wrote it, Ren had four spine surgeries, including one 6 weeks before my dissertation defense, and we learned not only that he has permanent nerve damage that will forever impact his ability to walk but also that the back isn't done, yet.

The back is bad.  I mean, really, really bad. See, Ren has congenital spinal stenosis. In other words, he has an unusually and severely narrow spinal canal. As a result, the nerves in his spine are highly susceptible to impingement, whether it be from arthritis, disc damage, or bone spurs. In practice this means that one day he can feel like things are getting better and all of the interventions have helped, and the next he can be laid so low by some other something going slightly out of whack that he can't even get out of bed.

Last week, when were visiting the spine doc to follow up on an MRI, I finally got the courage to voice the questions Ren and I have been subconsciously grappling with for months—you know, the ones that made us buy a house with minimal steps required to get in the front door and a master suite on the first floor.

I love Ren's doctor because the first thing he did was apologize--I mean sincerely tell us how sorry he was that all of this is so difficult. It's hard when you know you're making your doctor feel bad. It's not his fault the back is what it is. We know that, and I told him so. But, we also really need to know how this might go. So, I kept asking questions. And he kept answering them.

"Will Ren become unable to walk?" I asked.

"I hope not," he answered, exhaling sharply. "We will keep on top of it so that doesn't happen."

"Will the pain become so debilitating that he won't be able to function?"

"There are things we still haven't tried," he said, this time reassuringly. "They should help."

"Will there be more back surgeries?" I asked, already knowing the answer but wishing I didn't.

"Yes. At some point, the whole spine is going to go."

"When?" I already knew the answer to this question, too, but I had to ask just the same. Sometimes I can't help but be optimistic.

"I don't know," he said, "but we need to hold that off as long as we can. He's still young."

He's still young....

He's still young, you guys. At least young enough that none of this should be happening to him. But it is. It's happening to him, to me, to all of us.

It turns out that having a spouse with a somewhat rare, chronic, life-altering condition is a lot like having a kid on the autism spectrum. Little by little, the reality of what you face opens before you. It's not a dramatic shift, so for a long time, you hope you aren't seeing what you think you might be seeing. Then, slowly, in increments, you start to understand the nature of your new reality. It's incredibly disempowering and frustrating. At first.

But then you figure out how to get up and face each day. You figure out how to do whatever it is that you need to do. You learn to laugh. Sometimes you cry. But most of all, you just keep going.

Friends tell me I am strong, that they can't imagine how I manage it all, that they would never be able to do what I do. I never know what to say in response. Often I say nothing. And, mostly I wonder if having the capacity to handle a great deal of adversity makes me strong or whether it is just proof that I have never, not in my whole entire life, known when to give up. I'm pretty sure there's a difference between the two, but, then again maybe it doesn't really matter.

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