More Thoughts On Ma

I remember reading Joan Didion's "The Year of Magical Thinking" a few years ago, and while I was blown away by it and the beauty of the emotions it captured, the description of grief so eloquently stated and recorded, it was something I could put down and not fully understand. What would it be to see your husband of 40 years die in an instant at your dinner table? I had no idea, and was grateful. At the time, I could vaguely relate it to my sister's cancer diagnosis, to the changes and the fears I encountered as she went through treatment and recovery, but the difference is she recovered, and my grief subsided, went dormant, was, for the most part forgotten. As I moved forward with my life there were other problems to contend with, namely, my career and my dating life, both in a sorry states of disarray.

Now, though, I am remembering bits of Didion's book as my mom's cancer takes its twists and turns. I am overwhelmed in moments by a kind of grief that gives me no warning, no buildup, just takes me and lays my flat. If I am lucky, it happens when my boyfriend Matt is around and he scoops me up in his arms and lets me cry, wail and lament. When I am not so lucky, it is just me, pinned to my bed or my couch by the thought of losing my mother. I am not used to this kind of thing; I've always been fairly self-aware, able to handle what comes and when I can't, I know it, can recuse myself from the situation or the moment, breakdown and recover, rejoin life. This isn't like that. It's like nothing I've ever experienced. Didion writes about grief being like crashing waves that swallow you then recede, how it seeps in to every aspect of her life, how she doesn't drive down certain streets in Los Angeles, because there are too many memories there and for her that it would be like a vortex, sucking her in and swallowing her whole.

Although I'm sure there will be those types of vortexes for me when she is gone, for now my experience is different, as I can't avoid them in any real way. To be around my mother is to be in that vortex, a look, a smile, the sound of her laughter; anything and everything could be the moment that swallows me whole. And I wouldn't want it any other way, as to not be around her in this time would be more painful than any thing grief could throw at me, but there is a new phase of her illness happening now, one that can't be denied, and that is what I do fear might eat me alive. And that phase is this: she is dying, and there is no way around that particular vortex.

Her incredible doctors intervened a few weeks ago because they knew it was happening, and we perhaps knew it too. I could see it in the way she couldn't remember what happened the day before, didn't even want to try. How she shrugged about it all, simply had nothing to say, which is not like my mother at all. Then there was the way she lost her thoughts in the middle of them or reached for a knife three times in a row and didn't know what she was doing, simply sighed and gave up. She was sleeping more and more, and having small seizures despite the herculean amount of meds she was on. So they told us that surgery was the best option, and she had less than a day to decide. Yes, she said. And so did we. As to what exactly that would entail, well, she now says, we were naive.

We assumed it would be like her biopsy and when she recovered from her seizure, that she'd be fine nearly immediately. The 48 hours after surgery were nothing of the sort. She was so sick the day after it was painful to watch, nauseated and vomiting, so uncomfortable and out of it that there was little we could do. Then the next day, watching her search for language and not be able to get out the simplest of sentences, to think that she might never come back from that was also impossible. I knew in my heart she would, but just didn't know how long the lag time would be. The night after her surgery (the same day) she seemed able to understand us, and while I was talking to a nurse in the hall, she said, "Yeah," at a very pointed moment.

"Ma," I said. "You're not missing a beat, are you?"

"I understand everything," she said.

It was beautiful, but also the last sentence we would hear for awhile. I held on to it for days. She was stuck in her head for the next few days, unable to get out the words she was looking for, having trouble finding the word "no." Speech therapists came in, did ridiculous tests, left. Meanwhile, her head began to swell in a way I can only describe as pancake-like. I tried not to look startled when I came in one morning, but I mentioned it to one of her good friends, Jan, who's been with us since the beginning of this ordeal.

"Ok, that's it," she said. "I'm asking the nurses about it. I didn't want to alarm anyone."

"Alarm anyone?" I said. "You can't fucking miss it. Her head is huge."

She talked to the nurses, who told her that this, along with the nausea and the aphasia (her inability to find words, sentences) was all "expected." "I feel like telling them that none of this is fucking expected," Jan grumbled, and I agreed.

We spent hours in the ICU waiting room, my stepfather more upset than I'd ever seen him. "I just don't know if this was all a mistake," he said. "If we'll be able to talk to her like we have before, if her recovery time is going to be longer than her life expectancy."

Because I adored and trusted her surgeon, I just kept saying over and over again, with no real evidence beyond my gut feelings, "Listen, Dr. A wouldn't have done this if he didn't think she would pull through beautifully and have a better quality of life for awhile. We have to believe that. There's no other option than to believe that." He would nod and squeeze my hand and cry.

My sister brought in a point chart for our mother at some point in the middle of all this, a very simple one with a few key words in its center, words like "yes" "no" "hungry" "thirsty" and "fuck." Fuck has always been a very important word for my mother, something she punctuates many a sentence with, and using this word was a way she rebelled early on from her repressed childhood. It seemed important now that she had access to it, although a nurse in the ICU didn't necessarily agree. Jan had to pull her aside and explain what this word meant in our family, it's importance, all it stood for. She loosened up after that, but I'm not sure there's anything funnier than a grown woman post-brain surgery getting in trouble for pointing at the f-word. As Jan put it to said nurse, "Look, we don't mean to offend you, but we probably will."

I had to go to work on the second or third day of this ordeal, and went in to say good-bye to my mother only to find her with one eye so swollen it didn't even look real, like a prosthetic the size of half my fist had been glued on as some kind of horrible joke. I kissed her forehead and left, unable to think about anything else for the next 24 hours, nearly swallowed whole by that particular vortex.

By the time I came back the next day, Ma was talking, full sentences, fairly non-stop aside from when she would suddenly need an hour nap. Our relief was palpable, as was hers. "I was so frustrated," she said. "I was afraid I was going to be a vegetable. I mean shoot me now if I can't talk." And it would have been the cruelest of blows in all of this, that of her surviving, but without the ability to speak. The memory loss, the loss of the right side of her body, the inability to do anything on her own pales in comparison. It would be no life for her to live, and I could not be more grateful that she is at least allowed this for the last few months of her life.

As the days went on, her speech grew stronger, the swelling went down and she was transferred to a regular room. When Dr. A came to see her, she thanked him for the gift of time. He looked at her for a long moment and nodded, getting a little choked up. Next to her on the food tray was the chart my sister had made.

"Ah," he said, "Such a good word to have at hand."

We told him then about getting in trouble for using it.

"What?" he said. "Why? Listen, I've spent many an hour researching this issue, and aside from using it in way that would equal yelling fire in a crowded theater, saying it is perfectly legal."

There was no better way of summing up my mother's trials those last few days, a declaration of sorts, that for awhile, things were going to be ok. That my mother would say that word again and again and again, as loud as she wanted to, for everyone to hear. She is dying, yes, but for now, she is still here, and I can hold the vortex at bay for at least a moment every time I hear her voice.

And just in case we forget: Ma's t-shirt to remind us.