“We must never allow the future to be weighed down by memory. For children have no past, and that is the whole secret of the magical innocence of their smiles.”

—Milan Kundera, The Book of Laughter and Forgetting

It’s writers like Milan Kundera that can take me back to my dreamy college-girl self. Sweet magical realism…I still love you! This is a good thing, as it seems that’s were I am destined to live (at least a little longer)—moving back and forth between the realms of the healthy and the sick, between the mostly alive and mostly dead, between the working and the disabled, between children and geriatrics. It’s very strange, but not so bad as long as I can find the balance. Ay, there’s the rub!

Now I recognize  there is a new place I need to find balance. The past couple of times I’ve visited Vernon, I see improvement. His bantering abilities seem more consistent, and he is drinking water (shhh!) with less coughing, remembering how to hold his chin low, often without being coached. But these are all things we’ve seen before. They are given and then taken away. I just cannot sustain feelings of excitement at this point. It’s too exhausting for my weak little heart. It seems I need to consider these things from a more neutral place, let the good and the bad ebb and flow.  I need to keep this small boat from being tossed by drama every time the wind turns. The sails are thrashed as it is, and the gaps are starting to show.

A friend wrote me last week after I shared some of my frustration and sadness.   “I can tell you are in transition,” she said. Transition. I’ve been thinking about that word ever since. It feels correct, but I’m not sure how  I’m changing or what I’m transitioning to.  I’d like to think its into a more balanced state of mind. I adore Vernon but I can’t help him any more than I do. I already feel burnt out in reading to him and telling him stories over and over, reminding him of names and moments for which he has no filing cabinet in his mind. I’m tired of living someone else’s Groundhog’s Day. It’s a funny joke, but I get it already!

The other day, I asked him, as I often do, if he knew why he was in bed in the care home.  He was able to answer that he’d been in an accident. He even described the blue Vespa this time (he said it was his dad’s). I would have been thrilled at the breakthrough in his memory/acceptance of the event, but I think he is only remembering what we have told him over and over. I then asked him where we lived in England together.  He said he knew but didn’t want to answer such a ‘cryptic question.’ He knows me (and he loves me) but I don’t think he has any memory of our life together.

Here is Vernon (on a GOOD DAY) trying to remember our names. He is engaged and engaging, but that doesn’t mean there is anything already in his mind.

So in order to guard my heart, I’m going to have to find other ways to experience all of this. I’ve spent so long watching the ups and downs, and maybe its time just to be present with him, not watching too closely. Perhaps its time to start bringing more of my own work in, to do while I sit near him. The other day, I brought a pen and paper, and listened, writing a poem about another patient in the room. Yesterday, Justine and I brought our own drawings and sat quietly with Vernon as he lay on the mat and interacted as much as he wanted to.

This way, its not all about him…nor is it about disappointment on a bad day. I’m there if he needs me, but if we are going to be doing this on the long term, we need to find ways to keep our personal boats afloat.  Finding ways to reach out of the medical settings, even while we are physically inside it, is necessary now. To find a bigger world in one that seems so small and threatening.

That said, you can see Vernon’s sweetness was alive and well yesterday. Here is a video.  And here is the laughter.