Wednesday, May 15, 2019


There are some days in your life that start off one way and end entirely differently. Somewhere in the course of the day, something happens, and you know things will never be the same. I've had a few days like that.  I suspect everyone has.

Yesterday was one of those days for us. The weird thing is, I should have seen it coming. Something I haven't talked about much on this blog is Ren's severe depression. I don't talk about it because it really isn't my story to tell. What I can say, though, is that every time I notice his depression getting worse, it turns out there is something seriously wrong with the spine. It makes sense, right? The spine goes south, the pain increases, and he gets depressed. Only because he always experiences pain and because sometimes the pain ebbs and flows based on things like the weather or whether he did something more taxing than usual, it's not always clear when there is something new wrong with the back.

Before my own depression re-emerged after years of being under control, it was a lot easier to deal with things like the obsessions and meltdowns that come with autism and with the bad moods that come with spine pain. When my depression came back two years ago, the biggest concern I had was how I would continue to manage the intense stress that comes with our particular combination of autism, spine issues, and depression. Despite the fact that all signs pointed to the depression being back, I refused to believe it for months (do not recommend, btw).

The last few months have been hard. It can be hard to figure out how to keep myself in an ok place when everyone else is struggling. Depression and autism probably go together much more than people discuss, and it's a combo I wouldn't wish on anyone. I tried cajoling Ren out of his funk. I made threats. I asked him to leave for awhile to figure out how to be happier (he refused). I'm not sure I'd recommend any of these approaches, either.

Ren didn't know what was wrong, but he knew he couldn't leave and he knew he had to figure out how to turn things around despite the fact he was feeling pretty poor physically and mentally. He agreed to see the doctor to talk about medication and agreed, finally, to go back to the spine practice just to see if they could help. His refusal to go to the spine doctor makes sense to me because the pattern of how things go is the same--they try to figure out ways to manage the pain and only if and when that doesn't work, they decide to do an MRI or a CT. Every time we start the process of trying to figure out what's wrong, we learn something is really, really wrong. This has been our experience in three different practices in three different states. Surgical intervention with the spine is always the last resort, and it is always preferable to focus on least invasive procedures. This also makes sense to me.

Yesterday, we had our appointment with the non-surgical doctor at the spine center. We told her that we were pretty sure something what up in the lower back. We agreed that it didn't make much sense that he would be having the severe, pre-surgery-level pain given the fact there should be no movement there. And yet, and yet, we both suspected something was very, very wrong. At first, she tried to tell us the pain must be muscular, working on the assumption that the least likely scenario, a broken screw or rod, was, indeed, unlikely. She talked about restarting physical therapy or doing a pressure point injection. I told Ren he needed to tell her if he thought she was missing the point. So, he did.

"My leg goes numb when I lie down," he said.

"He says the pain feels like nerve pain and is as bad as it has ever been," I follow up.

"You know what?" she said. "Let's just take an X-ray to be sure."

Fifteen minutes later, she walked back in, ashen-faced.

"Well, I'm glad we took an X-ray," she started hesitantly, like doctors do when they have really bad news. "The rods are broken."

Do you ever get ringing in your ears? Do you ever feel like you can't think straight? Do you sometimes find it hard not to burst into tears on the spot? It took a lot of effort not to lose it completely, and I only vaguely heard her as she told us we'd need to get a CT scan and that the surgeon was already working through various repair strategies. "I'm so sorry this is happening to you guys," she said as we walked out. Small consolation.

When we got to the elevator, I wept while Ren patted me awkwardly on the back.  By the time the elevator got to the first floor, I pulled it together. In the car, I asked Ren how he was doing. "At least I know I'm not crazy," he said. "If I can live without fixing it, that's what I want to do."

We don't know what will happen next, but I suspect this is something that can't go unfixed. The uncanny timing of this, mapping almost perfectly on what happened two years ago, scares me. I saw a meme on FB the other day. "I can do this, I thought. And, even if I can't, I have to." That's where I am with all of this right now. Here's to learning the depths of our strength even though we don't want to.

1 comment:

Morgan Hazelwood said...


The hits keep coming. :( I really wish I could fix Ren's back for you (and him).