I sleep 11-12 hours a day now. Long, restless nights where I wake up many times. It’s hard to wake up in the morning. I fight it.
I hardly leave the house. Going outside feels bewildering — so many things to look at, feel, remember. Everything goes by me so fast. It takes so much energy to take it all in, to process and label things like “stairs” and “walking” and “trees” and “sky” and “people” and “cars”. So I stay indoors. My little world.
My beloved husband does almost everything. He is the most amazing man. Not just because he takes such tender care of me, but because he does it knowing that it’s possible that despite all this effort and deep love, I may not make it to the 40 years he hopes to have with me.
I want to give him as much of me as I can. Of course we never know what’s to come for sure, but he deserves so much happiness. My heart breaks to think he may not have what he is fighting so hard for.
I have super low blood pressure now, low even for me. This is a potential problem for surgery. We are doing things to correct it, but I get lightheaded when I stand up. There is a very real possibility of fainting or seizure, so I’m always thinking ahead — things to hold onto, where and how my body might fall. How surreal that this is what I think about dozens of times a day.
My body is taking this hard. I feel like I look so old now. All those hours of hot power yoga, gone. My skin looks old again. Wrinkly and soft. Those hard-won muscles are gone again. I look so pale. I cut my hair short again so I don’t have to do anything to it. I don’t wear makeup. I notice these things and they don’t matter. I look how I look. I feel how I feel. I don’t even think anymore about what other people think about me. I used to think about that kind of thing a lot.
Here’s a funny thing, at least to me. My skin is kind of peeling. Is this TMI? It’s not that gross, I promise. It’s not even visible. You know how, after you’ve had a cast from a broken bone and you get the cast off and finally get to bathe properly, that your skin kind of rubs off when wet? Mine does that. Everywhere. Every day. This is new. I thought at first it was from a medication, but now I don’t know. I keep imagining that my body rebuilds itself nightly and this is the result. Every day I imagine myself fresh and new.
I’m tired of eating but I eat anyway. Mostly more slowly than before. When I was 19 I did US Army basic training and learned to eat really fast. Later having four children, eating fast was an asset. Then for years I’d see people eating slowly and wondered what that was like. It’s nice to experience it now. Peaceful.
Time goes so slowly. Every day for me is like four days. Something that happened this morning feels like days ago to me. I think this is what “being in the moment” feels like.
I sit a lot, wrapped in a blanket. We live in SoCal, it’s 70-some degrees out, and I am always cold. Irony! I wear layers and fuzzy socks and a blanket. Our tiny elderly cat sits on me most of the day. She has come to expect a lap. My beloved says she is healing me. I believe this. I accept her gift.
I’ve been feeling sad lately about my relationship with some of my family. My father, my brother. We don’t talk. Long story. I haven’t yet told them what’s going on with me, but I feel called to. I’ll send emails soon. Before surgery. I would love hugs and reconciliation but I don’t expect it. So I feel sad. Some things you just have to let go.
Memory is so interesting. Sometimes I can’t remember something from an hour ago. And sometimes I pull out a piece of knowledge that surprises me. Brains are amazing things.
To help me get ready for surgery, I stopped taking a lot of the medications and supplements I was taking. It’s a relief. Taking them was hard, day in and day out. We hope I will feel better in a few days. So far, not much.
A lot is ahead but I try not to think about it. One thing at a time. There is wisdom to being in the moment. I used to be such a worrier! Not anymore.
So I sleep and I sit and I do self-care. That’s about it. Sometimes in the evenings or during the day when my beloved needs a break we watch an episode of Eureka on Netflix. Perfect nerdy sci-fi show for us, 45 minutes. Sometimes I have trouble following the story, but it’s TV so it doesn’t really matter. I always catch up.
One thing that amazes me is that I have few complaints. I live in what probably seems to most people like a tiny box of a life, and I’m okay with it. Comfortable, even. I keep checking in – am I really okay?
I may be totally lying to myself, but every time I check in like that I just feel peaceful. Like there is nothing else I could be doing right now that’s better than this. How is this possible? But it seems to be true. I like this life. It feels right. I feel…alive. And loved. This is magic.
Thank you for reading, for witnessing me. That’s all I want. Please, no advice for any of my little oddities I mentioned. I feel well cared for. So glad you are here. [If you desire to do so, we gratefully accept donations of money (PayPal to firstname.lastname@example.org) or time (PM @davedonatiu).]
Much love, as always.