Grief after Brain Injury

Some things cannot be fixed. They can only be carried.      —Megan Devine

When brain injury barges into your life, you can be sure grief is not far behind. As soon as reality sinks in, grief is there…waiting. My family faced it first—after all they could see me well before I could see myself. But as I became more aware, I started to realize that my life was irrevocably split in two: “before” and “after.” That is when I started grieving for my old “self,” and in some ways I still am.

How do we cope with our grief and move beyond the devastation of brain injury? How do we internalize the reality of our loss? I have no idea, but that hasn’t stopped me before. So I decided to take it on. My first step was to look up the five stages of grief: denial, anger, bargaining, depression, and acceptance. (Kübler-Ross, On Death and Dying, 1969)

It was straight-forward and insightful but didn’t really get me anywhere. So I kept nosing around the web. That’s when I discovered a blog post by someone named Megan Devine: The 5 Stages of Grief and Other Lies that Don’t Help Anyone. The author is a grief advocate and clinical counselor. She doesn’t buy into the theory that there are prescribed stages of grief, nor that once you “achieve” the last step (acceptance… of course), you’ll be able to walk away and get on with your life. Now that was more like it.

Megan has written a lot of pieces on her blog, but the first one I read was Has Grief Made You Lose Your Mind? [below]. I knew I had to share it. Her voice spoke to me in unexpected ways, and struck a chord even though our stories are so different. Her devastating grief caused her to “lose her mind,” and our “loss of mind” (so to speak) caused our devastating grief.

Her grief came in the face of death—the sudden loss of her beloved, and ours came in the face of survival—the loss of our “self.” In my case it was sudden, too, and incomprehensible. On a day like any other, walking down the street. And in an instant, I was gone. “I” wasn’t “me” anymore.

We tend to believe that only people with brain injury understand brain injury, right? But Megan Devine’s writing helped me discover profound parallels between her world and ours. On her website, Megan describes herself as “dedicated to helping you [her readers] live through things you never thought you’d face.”

Sound familiar? It certainly did to me. The first sentence of her blog post (below) convinced me. All I had to do was change two words:

Because we don’t talk about the reality of brain injury in our culture, lots of survivors think they’re crazy.

Do you ever think you’re the crazy one? Here’s what Megan Devine has to say on the subject.


Has Grief Made You Lose Your Mind?

Because we don’t talk about the reality of grief in our culture, lots of grieving people think they’re crazy.

When my partner first died, I lost my mind—and not in the ways you might think.

I used to be a person who could read books. I used to have a really great memory. I used to be a person who could keep everything straight without notes or a calendar.

I used to be a person who could do all of these things and suddenly I was putting my keys in the freezer and forgetting my dog’s name and couldn’t remember what day it was or if I had eaten breakfast. I couldn’t read more than a few sentences at a time, and usually had to go back and reread those same lines many times.

My mind simply stopped functioning. Has that happened for you? Has grief made you lose your mind? There’s no resource, no check list, for grief that says “these things are normal.” I mean, we have the stages of grief model, but that is entirely unhelpful. (see why at this link) Many grieving people simply suffer alone in the weirdness of grief, wondering if they’ve lost their minds on top of everything else.

When I talk with people, one of the things that brings the most relief is letting them know they’re normal; they’re not crazy. You feel crazy because you’re inside a crazy experience. Grief, especially early grief, is not a normal time. It makes perfect sense that you’re disoriented: everything has changed.

Memory loss, confusion, an inability to concentrate or focusthese things are all normal inside grief. They do tend to be temporary, but they last a lot longer than you would think.

For a lot of people, it’s a few years before their entire cognitive capacity comes back to any recognizable. form. There are losses in that too. Some of those losses are temporary and some of them mean your mind is just different as you move forward. The thing to remember is that physiologically, your body has experienced a trauma. Your brain is working hard to make sense of something that can’t ever make sense. All of those mental circuits that used to fire so clearly are trying their best to relate to this entirely changed world.

Your mind is working so hard, there’s very little brain power left over to track more than a paragraph in a book or remember that your car keys go on the hook, not in the freezer. It’s hard to think in an orderly, concise fashion when you’re reeling from loss.

While I can’t magically fix your mind, I can tell you this: you are not going crazy. Your mind is doing the best it can to keep a bead on reality when reality is crazy. Be patient with yourself. Make a lot of lists. Set reminders. Whatever you need to do.

Remember that this is a normal response to a stressful situation, it’s not a flaw in you. Youre not crazy. Youre grieving. Those are very different things.

Having your experience validated is powerful, isn’t it. It’s why I speak about my own early grief so often—it’s important to hear these stories. One of the most powerful parts of my Writing Your Grief course* is seeing how many people are experiencing the same crazy-making things you are. Being able to say what’s true for you, and have other people say, “me too!”—somehow, it makes grief easier to bear.

Megan Devine, Refuge in Grief blog


Postscript from Laurie

Funny thing about that. Sometimes I talk to an old (pre-injury) friend about living with TBI. I steel myself for the inevitable response, “That happens to me all the time!” and I bristle when it comes. Their emphatic “yes!” could make my TBI easier to bear, but it doesn’t. It just makes me crazy. Do they really think their problems are equivalent to brain injury?

On the other hand, in some ways they are actually validating my truth.  If I really listened to what they were saying and put myself in their shoes, I’d probably learn something important. It’s possible we really are not the only ones. So many people live with struggles like ours, caused by all kinds of life events—aging, illness, depression or, I now realize, grief. Brain injury is unique for many reasons, but I am not my brain injury. I’m just another human being living through life’s pain, sorrow, and loss (as well as gratitude and joy). I’m really not alone in more ways than I’d ever imagined. And that’s something to take solace in.


*See Megan Devine’s web site, RefugeInGrief.com, an online community and resource


Mask (detail): Dan tribe, Liberia. Late 19th-early 20th century. Courtesy Smithsonian National Museum of African Art

5 thoughts on “Grief after Brain Injury

  1. Rendy Kowal June 22, 2018 / 12:27 pm

    “It makes perfect sense that you are disoriented. Everything has changed.” Megan Devine, Refuge in Grief blog

    Disorientation by traumatic brain injury, was, for me, too, a personal journey into chaos: a death and another kind of living hell. It was also scarring for my family. It was 3 years after my accident that the TBI condition and disabilities were diagnosed, and 20 years before I received supportive, proper, and life changing treatment.

    I, like most people, have had losses of loved ones. The most profound was the loss of my Mom, when I was much younger, at age 28. This was many years before my car accident and brain injury. When I lost my Mom, I felt like I had lost an absolutely necessary limb: a part of my being, a very loving, reliably helpful extension of myself. I still feel that deep loss is so many ways.

    After the car accident and brain injury, I had a few more profoundly significant losses. Many years later, professionals at Mt. Sinai‘s Brain Injury Research Center taught me how to cope. Thanks to Mt. Sinai’s BIRC, I not only cope, but began to learn how to use the losses as beginning points of healing, growth, and acceptance.

    Briefly, personally, I’ve learned not to dismiss the memories, and my tears, but to relish and enjoy the profound privilege of having known and loved those loving individuals. In my ongoing grief, I’m happy when I remember things about them that I had forgotten. Or, when someone who knew them reminds me of occasions when they were “just being themselves,” how precious and healing those memories are.

    Liked by 1 person

  2. Silvina Cassinelli June 23, 2018 / 4:35 pm

    Grief, and all that accompanies this experience, is difficult for anyone to go through. My question is does it end- I mean the intensity of the grief- does that end? Dissipate? Diminish in intensity as years go by? Rendy, you still think about your mom and get happy when you remember something about her that you are happy not to have forgotten. Do the intensities of this grief change? Change often? I always ask myself ‘would I have done/been like/experienced X, Y, or Z had my TBI not happened?’ I always tell myself ‘You’ll never know, with or without a TBI.’ I always try to qualify and/or quantify this response; always unsuccessfully, though. Is there any other way I can talk to myself that might be more satifying and less frustrating for me?

    Liked by 1 person

    • laurienyc June 23, 2018 / 7:26 pm

      You’ve gone to the heart of living with grief and brain injury. That’s what drew me to Megan Devine’s work. When she said, “Some things cannot be fixed. They can only be carried,” she could have been talking about brain injury. It can’t be “fixed” either. We can only try to find a way to live with it – our own way in our own time – even though the loss is always there.

      Many thing help me “carry” my brain injury: reaching out to others, talking about shared experiences, owning up to what I can’t do or be, and trying to find what I can. I know this isn’t an answer; maybe there is no answer. Maybe spend time on Megan’s website, Refuge in Grief (refugeingrief.com). It is really very helpful and reassuring, and her writing is real, down-to-earth. As she says, “It’s OK not to be OK.”

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  3. Julia Maria June 24, 2018 / 9:07 am

    Dear Laurie,

    I totally relate to you when you talk about how crazy it makes you to have non brain injured people tell you that they, too, experience the same symptoms you do.

    I heard this a few times from people in the past and it caused me to close myself off and not want to share my problems and struggles again. Because, sure, these people probably felt symptoms at times which, to them, were similar to the ones I was describing. But I was just absolutely sure there was no comparison when it came to the intensity and duration of these symptoms. To the suffering involved! To their impact on one´s life!

    For example, hearing noise can bother all of us depending on the noise level, the duration and the specific circumstances under which we are exposed to the noise. Before my injury, there were certainly times when I was bothered by noise. And I could very well have said to a brain injured person “oh, yeah, noise bothers me too.” Yet, now I know the immense difference between the two feelings. And one can only know this when one has experienced both.

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    Anyway, I just wanted to write a little because there have been times in the past when, after reading your blog, I postponed replying to it and I ended up forgetting about it.

    Thank you for sharing. I am always moved to tears by your words.

    God bless you!

    Liked by 1 person

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