The Whole You

The Whole You

A few months ago I experienced serious writer’s block as I tried to draft my monthly BrainLine article.

“Why don’t you write about being a teacher?” my husband, TC, offered. “Or maybe something about yoga?”

“Umm, because it’s supposed to be about brain injury,” I retorted.

He sighed. “Why does everything always have to be about brain injury?”

Frustrated and impatient, I quickly shrugged away his comment. “Because it’s a website about brain injury! That’s why!”

The truth is that I understood his point. Like TC, I also have days in which I tire talking about brain injury. Two years ago, before brain injury ever entered my lexicon, I was a fourth grade teacher and a relatively new mother. My entire identity was rooted in these two roles and I was comfortable. I certainly never envisioned myself becoming an advocate for any issue, and then, almost instantly, I found myself living and breathing traumatic brain injury.

My relationship with TBI is complicated. I love connecting with other people with brain injury and their caregivers. I find deep comfort in sharing our story and hearing the stories of others. But it has also presented a real identity crisis. Yes, our family has been affected by brain injury, but how much are we willing to let this experience define who we are? How much of our future will we allow to be shaped by it?

Realistically, brain injury is not something from which we can ever get away. It’s like an invasive plant that seems to have suddenly covered every surface of our existence and there’s no denying that we are constantly maneuvering through it and around it. On the other hand, TBI is not everything. It’s not the cause of every tear, disagreement, or stressor in our lives. It just happens to be the most prominent.

TC and I are very reluctant to let TBI define who we are. There are simply too many other components to our lives and the people we’d like to become. But, as we’ve learned, we also have to accept that we can’t be everything all at once. The past year has required me to juggle a lot of roles and I have struggled — I mean, really struggled — to balance the demands of these roles as I’ve rebuilt my identity. As a teacher returning to the classroom after a year-long absence, I wanted to be as devoted to my students as I was in years past. I’d like to chalk this up to my strong sense of responsibility, but I also wanted to prove that despite my catastrophic life event, I was up to the task. However, the more entrenched I became in my job, the greater a failure I began to feel as a mom and a caregiver. I had thrown TC into the deep end of the pool only twelve months after his injury. Not only was he now in charge of handling all of his therapy, he was also responsible for caring for Jack three days a week. Despite his continued insistence that these challenges have been “good” for him, I felt on many days that I was giving my family the short end of the stick during a time in which I owed them more.

In the midst of juggling these feelings of guilt and responsibility, was the lingering question many caregivers neglect to ask: what about me? What part of this new routine, this new identity, was devoted to me: my wants, my ambitions? As soon as I returned to work, I stopped carving out time to write. For many months, I stopped jogging and practicing yoga — all of the activities that kept me sane following TC’s injury. As much as I have wanted to incorporate these many disparate roles and hobbies into my new self, the past twelve months have made me appreciate the difficulty in prioritizing our roles and accepting life’s very natural limitations.

I wonder how many others in the TBI community also struggle to define themselves post-injury. Are there others, like me and TC, who walk the delicate tightrope between refusing to be defined by brain injury, while also remembering that we can’t be everything to everyone, in equal parts, all at the same time? How can we all manage the perpetually shifting pendulums of our identities, finding both security and balance in who we are and the lives we are leading?

What I have to understand is that we must reserve some part of our identities, our existences, just for ourselves, to be filled with the roles that restore us, the ones that bring us joy and self-fulfillment. I am a caregiver, but I am also a wife, a mommy, a fourth grade teacher, a yogi, and a writer. Never in equal parts, always in fluctuation, and often with limitations. The whole me is an evolving reflection of my quest for balance and a life well lived. And, admittedly, there are moments that feel a whole lot like failure. But that’s when I know it’s time to stop and readjust. Maybe it means taking a day off from brain injury, stopping myself in conversation if the topic arises, or letting my e-mails go unread for a little while. Or perhaps it’s simply dropping the bravado at work and admitting, “This is too much for me right now.” The whole me has a lot to give, but not without the balance of taking a breather once in awhile. So I ask, who are you in your post-TBI life? What makes you whole?

Comments (7)

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I just want to talk.  SO much has changed.  I have changed, he has changed, but there is a denial that is still there after 13 years to really talk.  This keeps us stuck in a cyberspace relationship, because true relationships have good communication.  I run many times, because I've learned if I am sitting around I would love to talk to learn what was going on.  What was he thinking?  DId he really love me?  Does he now or is is a big burden?  Nice "nightware"! :) And nothing is said anymore.  Dressing to look good.... is the spark gone?  We are best friends and would rather be with each other than with anyone else. (most of the time).  13 years, and it's not important enough to tell his mom the truth about all that is happening or has happened.  But not if it's someone else he loves.  I've grown boring.  I try not too.  I push and push, and sneak out of bed to cry.  Isn't this strange?  Or is it?  I'm not asking to get on the top TV station~.  "Get a hobby".  Guess what.... I can have a hobby, but I will need help understanding.  SIGH.  There are things that could be changed, but there is no move to get out of the rut.  Yet we love each other and I love him very much.  I just want to be a bit normal in the relationship area.  I miss that. I've lost much of my family, and parents have died.  Will I never have a close relationship again?   Thanks for something to stop and think about and try again, and try again.....

Thank you Abby for your honest sharing with a fellow caregiver to husband with TBI, your words bring comfort ....knowing that others are struggling with life after TBI.  Our case is still way behind yours, after 2 years my husband is still can't tilt nor seat, i think the fact that he didn't get medical assistance only after 26 hours of waiting affected the healing process to be slow.

in my case i tried to hang on to God in prayers and spending time meditating on his words, that's how i find strength to go on everyday.  some days feel so depressed for progress is not constant as you step forward two steps back communication for he only speak in short sentences....he is not there most of the time (mentally and soul wise) though physically he is there....i don't think many people will understand what i mean unless they go through what we go through....correct?

thanks again for writing regularly on are inspiring many! keep up the good work Abby!

Wow! Right on! As a TBI survivor I find it hard to not let it identify me! I have been thinking about my own blog post about this very thing! Thanks for reminding me to define myself by other parts of me that lie hidden beneath "the rubble" of TBI/aneurysm!! Thanks for your honesty!!

I am also a teacher with TBI! With most things in life I have a positive outlook knowing that I have this condition. My students know and respect this and have a good laugh with me when I tell them the side effects I have. Three weeks in a row I gave the same home work assignment forgetting to write it down in my plan book each time. One day my daughter comes home and tells me that a few students asked her if I was alright after the three weeks. When I asked the class why they didn't let me know all we could do was laugh. Everyone handed their assignment on time! Can't complain!

I survived a large ruptured cerebral fusiform aneurysm. It did make me blind in both eyes, but that was easily fixed with 2 vitrectomies (something the hospital neglected to tell me, pfft). Overall I managed to survive the SAH with a small blind spot in my right eye, nothing in the grand scheme of TBIs in the world.

Two years out and I feel normal again...normal for a MS patient, which I am since '07. Surprisingly I see a lot of the symptoms I suffer from my MS reflected in the symptoms of TBI in other people.

I was suffering from a mild form of PTSD, reliving the fears of my first days home thinking of the different ways I could have a second rupture and fearing the absolute worst. The stress from those 'memories' was bringing me down. But I found a few TBI groups online that helped me through it by being able to share those thoughts. 

Now I don't feel like a TBI patient, I feel like I am just a MS patient and have separated myself from those groups. I feel like constantly harping on the pain and suffering of my SAH was too much and I stopped cold I did when I was a smoker. Looking at the other member's photos of being in the hospital and reading their posts made me feel like an outsider. Constantly being reminded of my experience was no longer necessary. My life was waiting and I needed to focus on that.

Now I feel better, more 'normal' and I am able to focus on my 9 yr old son and my husband and of course my kitties. I kept this page in my FB feed but I no longer follow the others. It seems unnecessary and like a rope trying to drag me back.

So I cut the rope.

Dear Abby, I have been following you and the progress of TC's recovery since the news of his mugging first swept our Capitol Hill neighborhood. Words cannot express in what great esteem I hold you for your service to others. Following your posts became even more personal when I suffered my own TBI after a severe auto accident. When you and TC were in Canada working on his aphasia, I was not able to pull the right words off my own tongue. My longer-term brain injuries relate to understanding time and numbers, forming new memories, and wanting to be inactive. Many of the links you shared helped greatly.

So, who am I post injury? Before, I was a super-smart, articulate, focused, resilient person full of stamina. After..., well, shall we say, not the sharpest knife in the drawer. Friends fell away - perhaps out of fear of not knowing what to say, or because I wasn't the same person.

Maybe not the same person, but still the same Self. I have the benefit of being a Yoga teacher with a 20 year meditation practice. When I found myself sad, scared, depressed, wanting to be drunk or stoned (even though I don't drink and never did drugs), I can use my meditation, pranayama and other practices to center and soothe myself. Gratefully, my long-term memories are intact.

In a way, I look at my TBI as a gift. All TBIs are different, but having one gives me insight to helping others. What you are doing in sharing your and TC's story so openly and completely is a real blessing. Know that you are always in my heart and prayers.



The feelings you share are very familiar ones.  Balance, trying to be what I used to be to others, etc.  We are still attempting to adjust to life with TBI in addition to losing our 26 year old son in the same accident that left our only other son with a severe TBI.  I'm not sure how we can live a life without being defined as "life with TBI," but trying to not let it consume every minute of every day is a good place to start.  Thanks for sharing!

This is a link to a recent article that shares a glimpse of our TBI journey.