Where Your Mind Goes

Last night I had a nightmare. My daughter, E, and I were on a train together. Somehow, she got separated from me and was on a sidecar of sorts that could detach from the rest of the train. For a while, she was riding alongside me, but then the sidecar (yellow) detached. Frantically, I ran around to the fellow passengers to ask them what had happened. We all waited for what seemed like hours, but in fact, wasn’t. When it returned, we were all relieved. They were back, unharmed. Except E wasn’t there. She was lost. I frantically implored those in charge–who were then revealed to be her nurses at the hospital–to help me find her, but no one except me seemed to understand the urgency of my request. As the minutes ticked by with no sign of her, my calls for help became ever more desperate. Hope faded out.

I woke up then, not in a cold sweat as characters always do in the movies, but breathless. Then tears. Seems my subconscious is taking me where my conscious mind will not tread.

It made me wonder: What is the point of worry? Is it helpful to go to the worst-possible scenario to ready yourself for that remote possibility? I’m sure I am not alone in the caregiver community, grappling with these issues. How much do we allow ourselves to worry? Is a certain amount of worrying productive, or should we steadfastly stay somewhere between hopeful and realistic? Striking the balance is no easy task, at least for me.

We are at the crossroads again with E’s illness (ITP, a rare blood disorder). The last few months allowed us to relax a bit as her levels danced around within normal range. For some reason–we don’t know why–she is below normal again, though not alarmingly so. We don’t yet need to restrict her activities again, but we do need to monitor her more closely now. The threat of protracted stays in the hospital is not as remote as it was just a month ago.

What does this mean? We don’t know. At the very least, it tells us that she is not over ITP yet. I had allowed myself the luxury of believing that was where we were heading–that she was in remission or perhaps even cured. It’s still possible we are heading in one of those directions. But apparently not yet. It may be that her disorder will need to be managed for years, or her whole life. Issues like menstruation and pregnancy may usher in debilitating relapses. It may, in fact, not be advisable for her to give birth with this condition. In my darker moments, these are the more sorrowful thoughts that fill my mind.

My public face, meanwhile, is to keep things as normal as possible for her. I cannot, will not let her sense my renewed apprehension. So we stay busy with the usual activities that fill our days. And I quietly applaud myself when I have epiphanies like yesterday, when I checked her mouth for blood sores under the guise of checking out the new teeth that were growing in behind her baby teeth (there were none). She did not suspect. I haven’t had the need to check her for months, so to do so would be like elevating our threat level from yellow to orange–I didn’t think it necessary to make her worry, too.

So I try to calm myself and keep hopeful, because I learned last year that allowing yourself to succumb to the downward spiral of worry most definitely can (and, as it so happens, did) lead to depression. I cannot let myself go back there, especially now, when I’m digging my way back up.

At the same time, I feel like a skier readying herself for the downhill drop. I’m at the top of the mountain, and the view is beautiful. I want to take a moment to enjoy what I see, what it feels like up here. The sun is shining, but it’s cold (I am a summer person, so I do not welcome any feeling of cold on any part of my body. Every winter I wonder why I live in an area that has four full months of winter and way too much snow. But I digress.) Back to the sun: It’s warming my face, and it feels good. If I focus on the sun, maybe the rest of me will warm up, too. I know if I put my mind to it, I can make it happen.

But then there’s the mountain. It awaits me. Can I zip down it confidently? Or will I stumble? Can I be strong enough to face the fear of what may lie ahead? I ready myself, get myself in position. Is that what worry is? Readying yourself for whatever the next path looks like–even the steepest of slopes?

I have no answers to my own questions; I’m curious what you think. In my worst-possible scenario–one which I would do anything to prevent, and one which is not likely to happen–I am reminded of one of the most memorable scenes from a recent PBS Masterpiece Theater miniseries, “Any Human Heart.” Admittedly I don’t get out to the movies much these days, but it was the best drama I’ve seen in years–a haunting and beautiful depiction of one man’s extraordinary life and the inner workings of his heart. As he is dying, an old man now, protagonist Logan Mountstuart is reunited with his true love, Freya, who was killed by an air raid in WWII London, along with their daughter, Stella, and unborn child. For the rest of his life, he mourns this monumental loss, moving on but never fully recovering. When he rejoins her in death, she says to him, “We were lucky, Logan. You and I.”

I believe that. We are lucky to have each other–whatever and however long we have. No matter how heartbreaking, it seems to me that having loved like this–with your whole heart, with all of the worries and uncertainty–is much better than not having experienced that love at all.