On Being Equipped

Ma was excruciatingly sad today.  She was worried about everything, from bankruptcy (should she live several more years and need more and more paid care) to my stepfather's (albeit horrible) cold and cough, which had rendered him watery eyed and exhausted and on the couch for the last few days, to me, as I've had a few weeks that have taken me under in several different ways. She broke down about all of it, and in the midst of trying to explain why she was so upset, every sentence a struggle, most of what she managed to say was, "I just want out of here," and "I don't know what I did to deserve this."  I've never heard her say anything like this in almost two years, and I can't adequately describe how the cells in my body feel changed by it. I went fuzzy for a few days after hearing her say that, picturing my mom in the prime of her life or in her 20s, that person who is gone now in so many ways, and thinking that there is no way to make sense of what is happening. Everyday I find myself trying to pry some bit of meaning out of it, and most days, I come up empty.  I realize, at some level, that this is a fruitless venture, trying to eek the meaning on a big picture grand scale when you are in the middle of something so huge that one wrong step, one minute too long lingering in the reality and it will take you under. 

I understand as best I can what she means when she has those moments - she is sick and tired of having to be taken care of all the time, above everything else. There is nothing more I would like to do than relieve her of this burden, to give her hours of time to herself, the freedom of taking care of herself and barring that, make her able to walk again. Moments like the ones we shared today make me feel guilty for worrying about how many times I've worked out this week or how much I weigh or how I'm going to get any time to myself that day, they make me stop and remember everything she is going through that she rarely gets stuck in, rarely expresses. These moments cause me to remember that she is entirely trapped and helpless in a way that is wholly different from us, the ones who take care of her.  It humbles me, sometimes brings me to my proverbial knees.

Lately, it is so much her inability to talk that is driving her to an unimaginable level of frustration.  There is no stopping the progression of this tumor, which we have all known, but we've been given such a reprieve from its marching orders that I imagined it coming not to a complete stop exactly, but to a slow slide, a nearly imperceptible kind of forward movement. That idea has faded these last few months, as words come to her only with extended effort and sometimes they never do, replaced by five or six sentences of gibberish that even I cannot begin to decipher.

Today, I felt like I will never be able to make sense about why this is happening, to her, to me, to everyone whose life she has touched. Then I was hit too, with the reality that she is going to lose everything before she dies and I will have to watch it happen. I think because she has defied the odds and done so well for so long, I refused to believe that she would change all that much more before the end - she would be herself and then she would be gone. And the magical thinking that the paralysis, the dependence, the loss of memory, the impending death - that was enough - that this disease would at least leave her speech, words, ideas, banter. It would simply be too much to take otherwise.  And so now it is just that. Too fucking much.

She has bits of sentences and words here or there, but it is going, that voice I love, those ideas and thoughts I'm not sure I can live without. I felt spun back in time today, back to those first days of my sister's cancer diagnosis, when I knew no details of this disease, including the fact that there was no Stage Five, and given that my sister was deep into Stage Three, no awareness of how close she really was to death.  I just knew that up until her diagnosis, the worst thing I had faced in life were a gaggle of bad boyfriends and graduate school.  Our family had dinner one night in Seattle after a particularly horrific day full of test results and prognoses and talk of taking both my sister's breasts.  I had been strong up until then, but as I tried to eat, the dinner and the restaurant faded away and it was just my mom and me. I looked at her and said, "I am not equipped." Without hesitation, she put her hand on my arm and said, "We are all equipped. It's just that none of us want to be."

It's one of the truest things anyone has ever said to me, and at 4 am, not sleeping, writing this, it's what came to me most clearly. And she was right, I had it in me to take care of my sister and hold her up when she couldn't do it herself. Not one fiber of my being was ready for it, but there it was, and I did it. In exactly the  same way, I don't want to be equipped to watch my mother die, but despite everything, I take small comfort in knowing that somehow when it happens, I will be.