Unfreezing Grief

Unfreezing Grief

Brain injury is not an easy topic for most people. And it’s certainly not comfortable cocktail conversation — unless you’re me. I suppose seventeen years, one book, lots of yoga, and lots of writing about my father’s frontal lobe TBI will do that to a girl. Brain injury is just how it is.

My conversations generally go a little like this:

“You’ve written a book, a memoir!” says a stranger. “That’s amazing! Can I buy it on Amazon?”

“Yes, of course —“

“— What’s it about? You?”

“Yes, well, it’s about growing up with my father’s traumatic brain injury.”

And then said stranger looks painfully sorry he asked. So I ease it over. I tell him it’s totally fine, and I’m okay to talk about it because I wrote a book about it. I tell a story or two that makes him laugh, and I explain how my book has a dual purpose: to inform and inspire the general public about brain injury and to resonate with families and friends that know exactly what I’m talking about.

It’s rare that people I meet can talk TBI like I can, so I get pretty excited when I get the head nod that says I understand brain injury.

Just recently I was at my cousin’s rehearsal dinner, which is hardly the place you yap about brain injury, unless of course you meet a lovely woman (who I’ll call Lexi) who is doing her good part to help veterans with PTSD and TBI. Wine in hand, we were on the very same page — more people need to know about the long-term affects of TBI.

“Have you heard of ambiguous loss?” Lexi asked.

“No, not exactly,” I said, a little embarrassed, because I more often than not know my TBI terms.

Lexi went on to explain that it’s the loss of someone when they’re still there. There are two types — physical loss and psychological presence and physical presence and psychological loss. The latter felt very familiar. I sipped my wine, nodded my head, and made a mental note to Google this ASAP when I got back to New York.

Ambiguous loss is a term coined by Pauline Boss author of Ambiguous Loss and other books. “It differs from ordinary loss in that there is no verification of death,” Boss states on her website. Ambiguous loss is everything my family and I have been going through, everything my book is about. It’s complicated, un-ending grief without closure. It’s the opposite of resolution. It’s missing someone like hell who’s still alive and with you.

In my case, for years it felt like my mind was being an awful tease. I lost (lost being an extremely relative term here) my father when I was fourteen. Yet his human form, looking mostly like he used to look, remained right here with us. But he sounded different. He acted different. He liked different foods and different music. He functioned entirely differently than the man I grew up with. In short, I’d been missing “Old John” like he was dead. And if missing your father, who is sitting right in front of you eating pretzels and watching Cops, doesn’t bring on an exorbitant amount of guilt, I don’t know what does. It tends to question every belief system you have.

I had always known that my mom felt it, too, but we didn’t talk about until years and years later when I was twenty-seven, slouched down on my kitchen floor complaining to her about my terribly stressful job, the men in my life, and how much I missed my father.

“I wish Dad were here to tell me what to do.” As soon as I said it, I realized how ridiculous it sounded. Wishing he were still here was something I’d been wishing silently for fifteen years, but something I never said out loud — certainly not to my mother.

“You have to let that go,” she said. “Your father’s dead. My father died when I was twenty-four, and yours died when you were fourteen. Let it go, Janna.”

I had nothing to say to her. I started uncontrollably sobbing.

“Janna, he’s gone. It’s time now for you to get over this. He’s not the same, and he’s not coming back. You have to remember everything that was good about him.”

Her words, said out loud, were suffocating, shocking. But it all made sense. They were all conclusions I’d come to on my own over the years, things that already lived inside my brain. He — that dad I grew up with, that dad I had planned on growing into a woman with — was dead. That dad was dead. And it didn’t matter how hard I believed or how many things I wished on, that man was simply not coming back.

After that night, I chose to see things differently. I felt like I could come clean. It was time to admit to this loss that my mother and I had been feeling for so long and had never talked about. I didn’t necessarily want to, but having a true understanding of the loss of my father — whether missing someone alive like they were dead sounded whacky to others or not — was the first step to my own heeling. For years, I had been stuck, either blindly hopeful or angry.

Grief is only frozen if we allow it to be. After a quick study of the Five Stages of Grief — denial, anger, bargaining, depression and acceptance — it became evident that I had been frozen somewhere between the last two. I’d done a lot of cathartic writing and a lot of yoga, which I credit with getting me through the first three. Now with this new piece of understanding, I was allowed to feel real loss. Now, I am feeling acceptance.

My grudge is gone, and the loss feels a little less ambiguous. I even treat my father differently. Something has lifted and somehow with less expectation for him to be who he used to be, he’s become a little bit more like the man we used to know.

Don’t get me wrong. There are great days of acceptance and realization, but there are awful days where it all still hurts. I just have a better idea where the hurt comes from, and I no longer feel the guilt or the confusion. The truth is simple. I had a dad. I lost a dad. I have a new dad, and I can still have a relationship with my new dad. I stopped looking back, stopped hoping for what was, and stopped seeking closure.

Comments (16)

Tears in my eyes, thank you for helping me make some sense of my crazy life!

Wow! Thank you for putting into words what I, and I suspect my daughters, have been feeling!
This is so clearly and beautifully stated. It is always great to connect with people who "get it" I have to admit, though, I laughed out loud about your encounter with the person asking about your book...I have the same experience all the time. At first, people say, "I'd love to read your book. What's it about?" and then, well, you just know you've pushed beyond their comfort zone. Great writing. Thanks for sharing.
I believe that people who have a family member with a serious mental illness can go through this type of ambiguous grief, too. It occurs when you know someone in one way, and then due to depression, bipolar illness, schizophrenia, etc. they change and aren't "there" like they used to be. The loss is real and the grief takes a toll. Thanks for sharing the concept of having someone and not having them, at the same time.
I totally get this, but from someone who had dealt with Alzheimer's and Dementia. Both my parents suffered from it up until they passed earlier this year. I told everyone at the funerals I had been mourning their loss for more that eight years, it's just that NOW I could really start grieving. Thank you for giving what I've been living with a name. Ambiguous loss. How fitting.
How beautiful, sad, and hopeful all mixed together. I find that acceptance is key to everything in life and a true gift. You mentioned Yoga, may I also suggest you explore Neurofeedback for you, your Mom and your Dad? I use the NeurOptimal brand and it can be rented if you go to their website and find a practitioner who has rental units available. NFB is like holding a mirror up to the brain. When the brain can see itself in action, through visual images and audio influenced by brain wave output, the brain then knows what to do to heal itself. NFB is a pharmaceutical and non-invasive brain training tool. It is FDA approved for training the brain to process and manage stress. TBI is nothing if not stress to the brain. Google Neurofeedback and PTSD for more info. Good luck and God bless.
For the first time in five years I feel like I belong with these folks. Finally someone understands living with a ghost. Thank you~
Great article! Thank you for sharing your experience, my mother has acquired brain injury and continues to improve, but as you know it's a slow process. She is a slightly different version then the mom I use to know but I've had to adjust and readjust as she recovered through various ABI stages. It's a relief to come to terms with change and you are absolutely right, there are days when you feel good about your ability to cope with change, and others where you feel almost as lost as when the initial ABI began. I empathize with folks whose family members have suffered dementia and Alzheimer's but I'm discouraged by the comparison. Traumatic and Acquired brain injury happen at the blink of an eye, there is no subtle change to notice and adapt to,TBI/ABI are more like being hit with a brick between the eyes that leaves you staggering and reeling from change and yes, grief and guilt. Thank you again for your insight.
I can only imagine your grief and loss, of the father you knew. I deal with the opposite of this, it is our son who sustained the brain injury at 21. He is unaware of his limitations and how his life has changed forever. His father and I, however, are painfully aware of all that he will not experience: graduating from college, marriage, children, a future on his own. We are trying daily to reconcile ourselves with his loss and our own.
Thank you all so, so much for your kind words everyone. I know how hard, tricky and sad this can be for all of us--no matter what the injury or who or what the situation unfolds to. I also know how strong, resilient and compassionate we all are. It's good to be in good company and to keep sharing our stories! -Janna
Thank you for your article. It gave me a new outlook on my mother, now long passed, and her years of extreme dizziness, bedridden in a nursing home due to degeneration of part of her brain. She too was changed and no longer the mother I once knew. Maybe this is true of so many others suffering from all manner of terminal illness, perhaps not in exactly the same way as in those with brain injuries but forever changed nonetheless. I appreciate your insight.
I can totally relate. My husband's TBI was over 30 years ago. For years I wondered where his original personality had gone. He also had post-traumatic amnesia for the first three years after his accident. My husband now is so different its like someone else woke in his body. I continue to love him and to mourn the loss of the 'man' I married. My greater worry now is how aging will affect him.
My son has certainly felt all you talk about. It breaks my heart to have my son (and all children) deal with this at such a young age He, too, was 14 when he Dad had a brain aneurysm. You wrote it beautifully! Hugs to you!
My brother's TBI was on August 20, 1972, he was 17 and spent 2 1/2 months in a coma and 9 months in Mass General Hospital. When he did finally come home, it was in a wheel chair and he had PT 3 to 4 times a week so that he might be able to walk again. As with many TBI folks, he needed to be re-taught many/most basic skills all over again. I was 13 yrs. old when this happened and it does change your life dramatically. I also lived in a small town, so everyone talked about how grateful we must be that he didn't die. None realizing that a big part of him did, he had been an artist, that dream was gone, as was a big part of his personality, he did become a different person. It took a very long time for me to admit to myself, my brother died and that I have a different brother in his place. I thank you for writing this piece and the other "Growing Up With Brain Injury". I know both these article will help others deal with TBI instead of trying to suppress all those feeling of loss, because the loss is real! Thank you, Kathy M
Your article rings so true. We "lost "our 30 year old son-in-law to an AVM traumatic brain injury 6 years ago. Our daughter had only been married 11/2 years. All their hopes and dreams died that day too! We are quite involved in their day to day lives and we truly love our "new" son-in-law! We like to laugh and say "it takes a village" to get through a day, a week, a month or another year! You learn quickly who you can rely on. Mary T. Louisville,KY
Wow! The timing of this could not be more perfect! Thank you for sharing:)