I woke up the morning following my last post with a feeling of dread after yet another near-sleepless night trying to get my mom’s pain under control. I felt stripped raw–so vulnerable–and I questioned my own sanity at putting something so honest up in the public sphere. Who does that?? But I shouldn’t have worried, because following my mother’s advice rarely works out poorly for me. The response I received was overwhelming, and you all gave me kindness and strength and love that could very well have come straight from her. Overall, it was clear that you all agree with CT (of course). I need to take better care of me.
Still feeling a bit frantic, I decided to go to the store and hopefully clear my head. Leaving the house these past few weeks has been a great source of anxiety for me–I worry about about running into people I know, about having 5 minute conversations about my situation, about things going wrong while I’m gone (the thought that she could die while I’m running around trying to find the right brand of vanilla almond milk is paralyzing). I sat in the car outside of Kroger on my phone, delaying the task while fighting back tears. Then I saw this:
Today has been rough. I’ve been missing my Aunt Linda so much. When I’m upset, I clean. Maniacally. I’ve been tearing apart my room all morning. I got to my closet and sat on the floor. I look to my left and there she is. Showing me she never left. The stone has two angels carved into it and I’ve always thought of them as my aunt Linda and Uncle Tom. On difficult days I carry it with me for strength. The last time I saw this stone was the day I took it to Sloan for my last scan results. I haven’t seen it since. But I wasn’t afraid I lost it. Because it always shows up when I need it. Like today. So for anyone out there thinking you lost someone that you love, you haven’t. They’re still with you. Call for them. They’ll find a way to show up.
I met Kathleen* almost five years ago at a concert in New York. She’s an all-around incredible human, and there have been a lot of times since then that I have drawn strength from her words, but this just knocked me out. I sat in the car sobbing, feeling all of the misery and panic inside me just rush out. Of course she’s still with me, of course. I just need to allow her to show me that.
Later that evening Alive Hospice sent over a R.N. to evaluate Cynthia and try to better ease her pain and agitation. I cannot say this enough: hospice workers have some of the most beautiful souls I have ever encountered in my life. After we talked about her symptoms, and the concerns I have been having for her comfort, Debbie looked at me and said exactly what I needed to hear–that I am not, and cannot do anything wrong in this situation. She spoke plainly about the reality of all of this, and answered questions I didn’t even know I had. While we talked, Cynthia slept between us, and she assured me that we could not say anything that she did not already know–that it is important to keep talking to her, because while it is difficult for her to communicate with us, that doesn’t mean that she doesn’t understand what is happening (in fact, there are many studies that show that at the end of life, even people who are completely unresponsive are actually aware of everything that happens around them). As always, Momma still calls the shots, and she would want complete transparency.
The next day felt like a breakthrough in my mindset. I tried to make deliberate choices to honor her wish–to take care of myself, and in doing so I felt like I was better able to take care of her. Sarah James came over and we went out for a bit together. We talked about how confusing this whole thing is, how at times we are overwhelmed by how quickly our circumstances have changed, and about how glad we are to have each other to lean on.
So when I was awakened early this morning by her erratic breathing I just…started to talk to her. It was easy to imagine her responses to my babbling. As her breath continued to be in turns fitful and even in her sleep, I pulled out my copy of Tennyson’s complete works (published in 1868, a Christmas gift from her last year) and started reading Ulysses. Halfway through the poem, she opened her eyes. When I reached the last section, she smiled. I have the last line of this poem tattooed on my body, in her handwriting. (All of my tattoos are in her handwriting, actually. It’s something we’ve secretly shared with each other for years.)
Come, my friends,
‘T is not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.
It may be that the gulfs will wash us down:
It may be we shall touch the Happy Isles,
And see the great Achilles, whom we knew.
Tho’ much is taken, much abides; and tho’
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.
I kept reading. I read i carry your heart with me by e. e. cummings. She looked in my eyes and moaned softly, and nodded. I read one of my recent posts, A Lifetime Contained. The lines You have many ordinary days behind you, Most of which were filled with sweat and work evoked a noise joined by an eye roll that I took to mean “Yes, Emily. Obviously.” She closed her eyes, face going soft when I spoke of the realization of her next big moment. I asked her after a while if she wanted to sleep some more, and she nodded. I turned out the lights and we fell back asleep. She’s been mostly asleep since then.
I had a conversation with my mother at 4 a.m this morning. I can’t wait until the next one.