Fumbling concern

In an effort to find some relief for Sandy's unexplained pain and nausea, we saw her primary care provider, Hannah, shortly after we returned from vacation. I'd met her doctor once before, and we both really liked her. She listened and asked intelligent questions. She gave us some useful information about building up the ibuprofen in Sandy's system, taking the maximum dose regularly to try to stay ahead of the pain. And she mused that the neck pain Sandy described sounded like meningitis. Of course, we were all thinking of bacterial or viral meningitis, and we had no reason to think Sandy had been exposed. It seemed unlikely, and the test is a spinal puncture, which is incredibly painful, so we decided not to do that just yet.

I felt good about the visit, because I felt that Sandy was heard and respected, and that we received some new information we could use to tailor our routine. Sandy was understandably more frustrated; she wanted definitive answers and, more important, definitive remedies.

But what stirs the most emotion for me about that visit were Hannah's questions for me. I'd just spent two weeks caregiving full-time in light of Sandy's erratic pain and newly persistent nausea. I was exhausted and fragile, fearing the upcoming radiation, fighting off a sense of foreboding brought about the pain and nausea, and missing my usual routines while we were away. I'm sure I didn't look all that great, and I know I was quick to tears.

Hannah asked if I was taking care of myself. I told her that I was. In fact, I was doing a pretty good job. I ate well, made sure I had exercise, got regular sleep, and when we weren't on vacation, spent time with friends a few times a week. But Hannah didn't know any of that. She didn't know me. She told me that I needed to take care of myself so I could take better care of Sandy.

Here's what I heard: "You're not doing a good job of taking care of Sandy. You're letting her suffer. You're neglecting her. You're a bad spouse."

I knew even then that she phrased it as she did because many caregivers neglect their own health, and the best way to motivate them is to remind them, essentially, that they need to put their own oxygen mask on first. I'm sure she wasn't meaning to say that I was letting Sandy down. But in my fragile state, I felt defensive at the idea that I wasn't taking good care of myself, and terrified that I wasn't doing right by Sandy.

As we waited for a prescription in the pharmacy, Sandy and I talked about the encounter. Sandy was angry about what Hannah had said, but not for the same reasons. She was incensed at the implication that I should take care of myself only because Sandy needed me, that I didn't deserve health and wellbeing in my own right. Sandy felt the comments somehow compromised my worth, and she was outraged.

This is one of my favorite pictures of Sandy, taken in Missouri
in November 2005, when we played at the park with our niece
and nephew. She was healthy and fit and full of fun; this is how
I picture her when I fantasize about her coming back in a
fresh, healthy body, able to enjoy life fully.

It was appropriate and thoughtful for Hannah to ask about me. Her approach would have been effective for many people, I'm sure. But because she wasn't my doctor and didn't have a history with me, she couldn't know just how regimented my self-care is, how well my naturopath has trained me, and how many resources I take advantage of. She also didn't understand just how worried Sandy was about becoming a burden, and how concerned she was about our relationship being more than just patient and caregiver. So Hannah's words — meant to help — hit nerves for both of us.

I reflect on that visit frequently. Her recognition of the symptoms of meningitis, when it turned out that the pain was a result of inflamed meninges, invaded by cancer. No one else caught that. My belief now that even if we'd identified the cause of the pain then — or even back in April, the cancer had moved beyond current medicine's ability to control it. Sandy's emphasis on my inherent worth, as a person, and my particular worth, as her Brie. My fear that nothing I was doing was good enough, that I was failing Sandy.

I wonder just how often my attempt to express concern or extend support clashes with the recipient's experience and ends up causing more pain or strife. I'm sure it happens. I'm far from omniscient, and I'm often clumsy with my sentiments. Sometimes I'm just careless. Fear of missing the mark isn't going to keep me from attempting to be helpful, but I hope to recognize how my words land and have the opportunity to restate my thoughts, to clarify my intent, when they do cause pain. I don't know how much Hannah saw in our reactions. I know I wept, and I think she may have misinterpreted that as me feeling overwhelmed and not knowing how to take care of myself. As was often the case, I don't think Sandy showed her reaction until we were alone.

When I worry about my conversational stumbles, I take comfort in the knowledge that I don't hold Hannah's words against her; indeed, I still think she was a great doctor for Sandy and I appreciated her concern later when Sandy was in the hospital. So maybe others can see through my errors and recognize that any pain I cause is also unintentional. I hope so.