Love, plain and simple

This beautiful essay was written by Emily Lowrey, wife and care partner to Tim. It personifies the journey of so many. I wanted to share her quiet words of love with you all.

Tim had a 3am choking episode a few nights ago. I thought it was Paco being weird grooming his toenails because it was a clicking sound - he's a strange & delightful dog but he's a night owl - but it was Tim. I'm not scared by much but this one rattled me. Later in the day, with homework due, I was grumpy and Tim said to me, "Enjoy me while I'm still here."

So it brought up these feelings for me. Of humility, of compassion, a centering back to what really matters, of shame in being so dang tired. The humility and compassion are helpful. The shame, which he did not intend and is my feeling to process, is not helpful.

Shame for me comes with not being able to fix this, or be my very best in it because there's the reality of all the daily things that need to be done. And there are so many things. And there's the sorting out of what cannot be done, what I have to let go of.

And the grief that comes from thinking about when all the things got done because we did them together, and there's no space to really process that except together. Because we are together, 24/7.

I realize I am doing other things, like school, but that is feeding me and keeping me going. It's necessary even while I set aside practical things that should be necessary but just can't be done. It's this weird survival mode + growth thing happening. It's tiring but necessary for my own survival that I move toward some things and leave some things undone.

Loving someone who cannot transactionally do much for you at all, but requires you to do so much to keep them here, is a very different kind of love. There's no dopamine hit from coming and going - to work, or whatever space people have - and seeing one another again. The list of what we can't do is so very long, and the list of what we can do is short externally but endless internally. We clear mucus plugs so he doesn't choke to death. The brain doesn't give you a dopamine hit from that. You get a stress response, and exhaustion from it. We have deep conversations, and give each other grace. There's not even really a dopamine hit from that but there's something deeper in it that feels life-affirming.

It's weird missing a version of a person who was here previously and so high-functioning physically but who's here now in front of you with different functions and abilities, and that thing that makes them them is still in there: their brain? their soul?

It's also strange to communicate through a computer with your person, and be grateful for the technology but miss so much just being able to have normal speed & tone conversations. Communicating now requires patience because it's slow going typing with your eyes.

This is unconditional love, for both of us. We have both grown together, and individually, in this and I am so grateful for that. Don't just love people while they're still here. Enjoy them. So simple and so true.