breathing and cursing

When Elizabeth, a woman I’ve met only once but have known a few years, picked up the phone, my tears began to flow. I’d called a month or so ago, hoping she’d help quell my pain, worry and frustration about my son. I knew she’d understand because she has a child like Calvin of her own—Sofie—but also because I know, in part from reading her blog, that we seem to see the world and react to it in similar ways.

I wasn’t looking to Elizabeth for answers, only for her to lend an ear and perhaps validate my emotions and concerns. I used to turn to my mother, for one, when I succumbed to the gravity of despair. Mom always said in her loving voice, “No one can know how hard it is except for you,” and that was enough. But I lost my mother to Alzheimer’s, by degrees these past ten years then, finally, in early October.

It seems, too, that I may have lost a dear friend, a single woman with no children whom I've been close to for years. I'd called her last July in a similar moment of grief over Calvin, needing someone to listen, my mother long having become unable. Her voice was familiar, soothing and kind. Then, at one point she said something like: 

Christy, ever since Calvin was born you’ve been so angry.

She went on to talk about acceptance, and I questioned whether acceptance had to mean a denial or absence of anger. I asserted my belief that expressing anger can be healthy, even cathartic, and should be honored as one of our core human emotions right alongside joy and sorrow. She talked about the universe trying to find balance. Hearing this widely held theory, while appealing, offers me little consolation, the cosmos often feeling so much as if it tends toward chaos, albeit astonishingly beautiful nonetheless. After the mention of balance, we lost the connection mid-sentence. She tried to ring again but I didn’t pick up because I felt more disheartened than before I’d called, so she emailed me and began by saying:

you called today in a place we've all been and sometimes what we need is an ear, sometimes a distraction, sometimes an insight we didn't know we were seeking. 

And while I understand her meaning—knowing we all have our burdens to bear—she's never been where I am with Calvin. Still, I tried my best to be open to what it was she was saying, though I must admit I probably failed to hide my agitation. She ended with this:

my intent is unwavering which is simply to love and support you.

I replied:

i know. xoxoxo

I haven’t heard from her since. I wonder if she knows about my mother. I didn't contact any of my friends when Mom died—didn't have it in me. But friends and strangers soon learned from reading my blog.

A few days ago, when Michael, Calvin and I were in the throws of flu, seizures and sleepless nights, Elizabeth, Sofie's mom, wrote to ask if we could talk; she was in a hard place. I told her we were sick but that I’d try her over the weekend. I reached her yesterday and could hear her daughter softly moaning in the background.

For the good part of an hour we chatted about cannabis and a new strain she’s begun giving Sofie, one that has helped calm most of her seizures which were getting out of hand again. We talked about grief, frustration and anger, and about the parents who attest to graceful and patient caregiving of their complex, disabled kids. We marveled at such a feat, indeed wondered if it were truly possible. We joked about losing it when our kids' shit and food fly, when we fear for their lives, when their bleating becomes too much to bear, and when so much of our sleep is deprived (some call our condition PTSD, though in our case the P stands for Persistent). It seems we two, Elizabeth and I, are sisters in arms when it comes to our fleeting gracelessness and, at least for me, ceaseless complaints and pity parties with little restraint. We agreed that being able to get out our frustrations, at least by cursing, helps renew us for our endless duty to endure more. Because this caregiving of our disabled children and adult children who are non-verbal, incontinent, unstable and racked with seizures, is relentless and indefinite, the worry, fear and burden proverbial barbed thorns.

Elizabeth says to me, after I lament not being able to talk with her on the phone at the very moment of her most recent crisis:

I always know you are there breathing and cursing.

I smiled and chuckled as she went on to describe two tin cans connected by a string, as if we lived next door. If only.

Breathing and cursing, I mused. What a nice thought, and I felt much better when I hung up the phone.

Photo by Michael Kolster