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


  1. I love this and you.

    And I'm totally breathing and cursing today after a night of multiple seizures and no sleep. Contrary to what you said on the phone, I've apparently jinxed the situation. Fucking A.

    1. no jinxing allowed. fuck. fuck a duck. fuck this shit. fuck. fuck. fuck. call me if you need.

    2. are we allowed to say "fuck" here? just sayin.

  2. I often wonder at how hard it is for us to know how to support each other as human beings. There are some people who manage to be really good at it (like Elizabeth), and others who, from time to time, falter even though their intentions are good. I winced at the recounting of the phone conversation with your other friend, having been on both the receiving end of that as well as the giving end. Fortunately, I know that when I start spouting platitudes or trying to make some sense of the Universe (as in, it's finding balance), I have strayed from the place of giving comfort, support, and empathy to another and into the realm of trying to make myself feel better because I can't do anything that feels substantive. It's funny how cursing and breathing often turn out to be the most substantive things we can do as we sit with people who are struggling. I will breathe and curse with you and Elizabeth both.

  3. Fuckity fuck! No swearing. My morning google porn search took me here again. I should know better by now. No pix of blondes in a LBD, pouting even. *uck! On he other hand. Go Calvin!

  4. The older I get, the more I realize that I don't really have any insights to give. Especially to people who are in situations which I know nothing about from experience. That the best (and only) thing to really do is to say what your mother said and to listen.
    And yes, to breathe and curse with whoever needs that.
    Beautiful post.

  5. I'm all for breathing and cursing to, especially the cursing between breaths because no one can know how hard it is except you and your attempts to share the experience with others helps us to recognise some of your burden, but only some. Yet it helps for all of us to share our loads through cursing and breathing, breathing and cursing, because life might be ideally about balance but in the long run it's all about negotiating the highs and especially the lows. thanks.

  6. "The older I get, the more I realize that I don't really have any insights to give." Yeah...what she said.

  7. I lost my best friend because she said I was too angry. There seems to be a theme running through the lives of women with disabled children. Are we that angry? Or just tired? Doesn't really matter now. It hurt a great deal to be told by your best friend that you're just too angry to be bothered with. Perhaps not as good a friend as I had once thought.

    I'm glad you and Elizabeth could talk. It's isolating and you two speak the same language.

    Sending hugs.

  8. Well, I see acceptance as let go of situation, as letting the seizures do the trashing and leading to status and then the worst. So fuck the acceptance!

  9. I have recently been reading your blogs that you have been posting. I am a developmental service worker student. I have been learning lots about epilepsy just reading your blogs.You do have to let go of the angry and just accept what life brings you. Just remember that you are a brave and strong women what you have been going through.

    1. dear anonymous, do you have a chronically ill, disabled child? and what exactly makes you think that i have not accepted what life has brought me? just because i feel angry at times does not mean i have not accepted my situation, but even if i didn't accept it, that is my and my family's business and no one elses. glad you are reading, though. perhaps you will learn some more about other things besides the epilepsy, like the human condition in a war-torn family. take care.

  10. I'm sorry, I didn't mean it like that. We are learning about different disabilities.

    1. thank you. sometimes it is just hard to get advice from folks who can't fully appreciate how difficult this life can be. clearly you have an open mind and are very kind. you will go far, no doubt. thank you for your gentleness and curiosity! xo, christy