Radio Silence (and Ma)

A friend of mine emailed me recently, worried, as she's noticed my radio silence as of late, no blogs, not a lot of chatting in general on Facebook and elsewhere. I guess that's been happening for the last few months, for numerous reasons, including that I seem to be both inspired and overwhelmed simultaneously these days, given my mom and everything that comes with the situation.  I want to write about her everyday, and I mostly do, in a kind of journal or note form, and I've thought about trying to post more, but since I am, ahem, a writer, I want them to be polished, poignant and well, nearly perfect.  I know this is half the battle, letting go of utter perfection, but I also worry about boring people, wearing them out or simply repeating myself to the point of distraction with all of this, mainly because most days I am on repeat in my head about all of it, wondering, forecasting, grieving, recording and surviving.

I've been trying to figure out how to write about what a gift and a weight it is to take care of someone you love more than life without sounding like an asshole, or worse, preachy.  I'm still working all that out, hence all the radio silence.  I wouldn't do anything differently this last year, and would have regretted it forever if I hadn't chosen to move in and help my stepfather take care of Ma (along with a long list of her amazing friends and my aunt who rotate in as caregivers) - my sister would have done it too, but as she said, "I've got a husband and three dogs - I think you've got a tad more flexibility than I do."   It's more the stop time of this last year that's hard to describe. I can only compare it to the year I lived with my sister when she had cancer, but what she had that Ma doesn't is the hope of remission.  The difference of living with hope and no hope cannot be overstated, although the moments of joy I shared/share with each of them are much the same. 

This week Ma hits the 14-month mark of a 12-14 month diagnosis, the bell curve of which only 50% of people with glioblastomas manage to hit, even with radiation, chemo and surgery.  Ted Kennedy got 15 months, and I have a feeling Ma is going to beat him, and if you beat a Kennedy at anything (aside from drinking or whoring) well, that's something.  But with that, my family is living in a suspended time of sorts, not knowing how much of it is left and wanting more of it, while confusingly wanting to also know when we will have to really start letting go and then, eventually, moving on.  Ma too, is caught in this, and the other day remarked that when she asked her guru, Maharajji, for more time, maybe that wasn't the smartest move, that maybe she should have been a little more specific - like more time not paralyzed and totally dependent, but, as she would say, you get what you get.  Mostly, we sigh and try to laugh, shaking our heads at the lunacy of it all, like the moments where she struggles to find the words for what she needs and we all spend five minutes guessing, and she eventually says, "Fucking forget it," or when I'm getting her dressed in the morning or undressed at night and sometimes need to proclaim, "Don't look at my butt!" because this is what Ma said one day when my sister was in the room, and my sister said she wouldn't, but then confessed she had to, because, well, it was there.

One of the most amazing moments as of late was when my stepdad and I were talking about who would take what shift over the weekend while Ma listened, and as my ever-loving, ever patient and ever kind stepdad tried to figure out what he might do in his three hours of free time on a Saturday, and was completely at a loss, and started ruminating (very slowly, very, very slowly, as decision making is not his strong suit these days, especially when a wrench is thrown in his routine) my mother blurted out hilariously, "Just say it!" "What?" he said. "Just say it," she said again, "How fucking long can this go on?" I laughed until I cried at that one, and if you don't get it, well, you've never had to use gallows humor to survive a tragedy of epic proportions.

So that's part of where we are at, and part of why I struggle (ever since the seizures, the ER, the ICU and the hospitals in general have been a thing of a past) with what to say when people ask me, "How are you? How is your Mom?" This does not mean I'm not infinitely grateful when people do ask, because I am. So grateful. There is nothing stranger than the person who knows what's happening and says nothing.  Ever.  Although I understand the difficulty of broaching the topic as well, but trust me on this: It is better to say something than nothing at all. It's just so hard to put into words these days what is happening to Ma, as these last months have been a slow and often subtle decline of her energy, her memory and her brilliant brain.  She is a whip-smart lady with a nearly photogenic memory (two things I am lucky enough to have inherited from her) not to mention a kick-ass sense of humor.  She gave me that too.

I guess what I can say in terms of what is happening right now is that everything is happening as exactly nothing is happening.  Part of what is so difficult for me to articulate is that I am watching my mother age at some kind of twisted warp speed, not to mention the fact that I'm caring for the person who has always cared for me. The other issue I struggle with is how to explain that taking care of someone who is actively dying colors every aspect of my life, everything I think, say and do.

To try and counter all this, among many other things, like seeing friends and working out, I take myself out at least once a week to happy hour somewhere and drink too many glasses of wine and try to pretend that I'm living this normal life, where people do things like go to happy hour. And whatever else it is that normal people do, like plan for the future and register for pretty towels and change their newborns and work 9-5 and move forward each day.  That paradigm is so foreign to me at this point I sometimes feel like I'm living on a different planet, as I just have to be right here with my mom and family and my lovely boyfriend, because there is no planning for what's next right now, all that exists is her and the fact that today, she is still breathing. I'm suspended in this bizarro world of pain and beauty, and there are days where I almost can't talk to anyone outside of it, for fear I will either snap entirely or I will start talking and be unable to stop, and the bulk of what comes out of my mouth will make little to no sense.

There isn't much I've read that's been able to capture this world of caring for someone who is dying, someone who is everything to you, where love and grief are so huge and entangled they create a world that is entirely separate from the rest of reality.  Then, a few weeks ago at Powell's, I bought The Best American Essays 2008, which included "The Constant Gardener" by Bernard Cooper.  He is a brilliant writer, and if you haven't read his stuff, do it now.  Now!.  Anyway, in the essay, he is writing about the final months of his partner's life -- he and Brian have been together for 25 years, and Brian has been HIV positive for 17 of them, and very sick for the last four.  Bernard writes at a time near the end,  when he goes on supplemental nutrition to keep from simply wasting away, administered through an IV at night - he'll never eat solid food again. It's a turning point that makes Brain's death so close that Bernard can no longer deny it's happening. 

"I grab Brian's jeans off the floor and begin to fold them, but my hands grow suddenly huge against the waistband, the pant legs. "Nordstrom," he says, seeing me bewildered. "I bought new pants in the boys' department." His remark keeps me awake for hours. In the time-lapse of my imagination, I picture him wasting away until he's little more than a strand of himself, as white and lifeless as a length of thread. This image visits me repeatedly while I lie beside him and try to read, scanning the same sentence, the same paragraph, over and over; regardless of how compelling the prose, its representation of the world beyond this room is never quite as urgent as the world within it, a world where the air is close and overheated, aglow with milky light, dense with emanations from our lungs and bowels and the acrid odor of his body striving, even in sleep to stay alive. The recurring image of Brian's diminishment is also, I'm ashamed to admit, a wish for his absence to be realized rather than impending, a wish for everything that has been protracted and incremental about his illness to be hastened, accomplished, over at last, the advent of his death transformed into something as ordinary as a loose thread, as easy for me to break free of. Then, as happens several times a night, I turn to him and listen, reassured by his breathing, firmly tethered to the last days of his life."

Ma and I are not exactly where Brian and Bernard are, but those threads he talks about are definitely in place.  Just the other day, after a minor rearrangement of living room furniture, we sat together assessing the new room. She looked over at me mischeviously, leaning in with raised eyebrows  and said, "We've never been closer," as she reached for my arm. In my family, I am famous for not really loving hugs or other kinds of cuddly behavior, and in the past, might have recoiled from such a gesture. I don't anymore, and put my hand over hers. We never have been closer, communicating in a shorthand created from a language all our own, despite the fact that every day, she is leaving me.