The old me died (Findings)

“I had to mourn the old me,” Peggy tells me before taking a long sip of her coffee.

“I had to say goodbye to that version of me.  She’s dead.”

Peggy adjusts her glasses and pushes back the graying hair that falls in front of her face. After going through a stroke that completely changed her cognitive ability and her life, Peggy is still coping with the loss of who she was before. She explains:

“That Peggy died. The stroke took the Peggy I once knew, and I had to deal with that. I had to mourn the loss of someone very close to me . . . Me.  And I miss her dearly. I miss her like I‟d miss a best friend.  This new person I am – well I guess I‟m getting to know her slowly – but really, I am still grieving losing me right now.”

Three years have passed since Peggy‟s stroke, and even though she has attempted to put together her life again, she also recognizes that for her, the grieving process is more important than “meeting” her new self right now.

I listen intently as Peggy continues her account.  This is our second interview together, and she has expressed her gratitude for the opportunity to share her story with me numerous times.  In manifold ways, retelling her story keeps the memory of her former self alive.

“I had to quit writing because it was just too difficult after my brain injury.  And I miss the journalist me.  I miss her writing, her ability to be a professional in that industry. . . .  But that‟s why I try to write and talk about my experiences as much as I can.  It reminds me of the old me . . . the one who died.

Peggy’s story speaks to the true depth of sadness and loss that my peers and I feel from experiencing such a traumatic event as brain injury. Communicating about that loss allows us to co-construct our identity with a piece of our former selves.

When we conceptualize reconciling our former identity as mourning the death of our old selves, we gain insight into the emotional pain and loss that brain injury survivors experience.  For some brain injury survivors, losing ability and the sense of self is akin to the loss of a close loved one. It’s a long, arduous journey that involves a grieving process.

If I think of a time when I lost someone close to me, I feel like I get a glimpse of Peggy’s true loss, of my unbearable loss. I miss the old me too. She’s dead.

Although the grieving process may differ from person to person, in nine of the 16 meetings I had, participants used words that describe grief, “saying goodbye,” and “grieving time” as important after experiencing brain injury.

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Drunk or disabled?

I’m so lucky to be alive, so lucky to have 95% ability in my left side, that I sometimes forget my left-sided weakness is in fact a disability. Sometimes I don’t feel “disabled enough” to feel it warrants that distinction. Like somehow I’m making light of others’ disabilities by calling my 5% injury a disability.

But anyhow, that’s all an aside and really not my point right now. The point I’m trying to make is I do have a slight limp that becomes more apparent when I’m tired. Thing is, having a brain injury means that I’m almost always tired. Other thing is, having a limp means you get to say cool things like, “I walk with a limp like an old school pimp.” (Thanks, LMFAO.)

“How much have you had to drink tonight, miss?” This bouncer was not the friendly face I usually see at the neighborhood bar. I guess Corey wasn’t working that night.

Confused, I just smiled. “Well, nothing yet. I’m trying to grab a drink with friends here. Is Corey working?”

He looked at me suspiciously, blocking the entrance. My friendly remark had only seemed to make him more skeptical.

What was he getting at? No, I hadn’t had a drink. I was hoping to go inside the bar so that I could have a drink.

After a pause, he frowned. He asked again, “So you haven’t even had one drink?”

I live in a neighborhood where I can walk to bars and restaurants. On this night, I had walked about a mile to meet up with friends. In other words, I had been walking long enough to my body to feel tired and to limp a little bit.

The realization hit me: I must have had a lot to drink to be limping like I was.

“Ohhh…” I started, hurt and embarrassed by his discrimination.

“So you’re wondering why I walk like this? Yeah, it’s really not drinking that caused it. I have a brain injury.” I lifted my eyebrows, hoping he could feel the daggers I was shooting.

“I was paralyzed on the left side of my body,” I stressed each word, shrugged my shoulders.  “Occasionally I limp a little.”

Happy Friday! + Inspiration

“I believe in pink. I believe that laughing is the best calorie burner. I believe in kissing, kissing a lot. I believe in being strong when everything seems to be going wrong. I believe that happy girls are the prettiest girls. I believe that tomorrow is another day and I believe in miracles.”

boxing

Except that I don’t like pink, thanks for the inspiration today, Audrey Hepburn!

Let’s all believe in miracles and ourselves a little more this weekend.

Whoa, baby. Let’s back up a bit.

I have a tendency to be lengthy. I know this. My friends and family know this. And if you’ve read even one of my posts, you know this too.

I also have a tendency to jump around from one topic to another, chasing after my thoughts excitedly and forgetting listeners are trying to follow along. Has my AVM caused this? Or is it just who I am/was, regardless of brain injury? Sometimes I wonder. But then again, I digress.

That said, I want to back up and explain whose stories I’m sharing. I’ll do my best to keep it short.

Here’s a table summarizing my participants, their brain injury, and my interactions with each of them.

7 participants, 16 interviews

7 participants, 16 interviews

I also choose to share our stories in the present tense (which is a little confusing at times, I know). Our stories contribute to our narratives, and our narratives contribute to our identities.

It’s not black or white: I’m stuck in the gray (Findings)

“Every day is like a blind date with this new me,” Richard explains.

He sighs, pauses a few breaths. After a moment of preparing himself, he starts again with what seems like the script he uses to explain his brain injuries to most people: “Every day I‟m finding out who I am as this new person and being kind to who I am.”

Richard is associated with SBIF, and although he does not attend the monthly support group meetings, he responded immediately to my request for an interview. Richard and I arranged to meet at a local coffee shop on a sunny afternoon, and I recognized him right away sitting with his walker parked next to his chair.

Many individuals with brain injuries feel caught between identities that once seemed straightforward, that once seemed so clearly defined. Of the 16 interviews I held, all 16 included reported instances of feeling “stuck,” “not the same anymore,” or some other varying shade in the gray space of liminal identity.

Liminality, according to Turner (2007), is the space in which individuals may get “stuck” as they move from one ritual or phase to the next. Based on this explication, the participants of this study and I occupy the liminality of having brain injury, a space in which we both work to figure out our identities as well as try to determine what is “normal” for having a brain injury.

Being the first generation of individuals to survive brain injury, the medical community has little knowledge to establish a baseline of normalcy, and society has difficulty perceiving anything beyond it (Brooks et al., 2013). Thus, here my fellow brain injury survivors and I are, forging ahead in our liminal space.

Sitting near the back of the room, I try not to be seen by everybody else at SBIF‟s support group. In spite of my attempt not to join in, I am pulled into conversation by the person sitting two rows in front of me. Philip jumps into telling me about his brain injury. He fills me in on his ABI, his recovery that followed immediately afterwards, and his daily struggles now. He notes that what has changed most in his life is that he’s no longer who he used to be.

“I have a sense of becoming,” Philip tells me. “But I don‟t know who or what it is I’m supposed to be becoming.”

My brief encounter with Philip sticks in my mind for the rest of the day. I reflect on his “sense of becoming,” and I know he must relate to having a liminal identity like the others in my study and I do. We feel that the “normal” we knew before is gone, and we are waiting for the “new normal” to arrive.

Do you ever feel that way? With brain injury or otherwise?

I offer a few opening questions to ease Richard into the interview, but he brushes them off with a swat of his “good hand,” the hand unaffected by paralysis. He insists instead on delving wholeheartedly into his story.

“Well, the first stroke happened eight years ago. Then I had hip surgery. While I was still in recovery from that, I had the second one [stroke]. And that one was far worse. . . . Paralyzed me on the right side, messed up my speech, messed up my memory. I couldn‟t believe I was still alive after that. . . . It‟s kind of amazing, really. So that‟s all good, but it was also incredibly tough for me, for my wife and for my daughter too. I still feel like I‟m still putting the pieces of me – my life – back together.” (Richard, February 2, 2014)

Richard‟s story mirrors my own sentiments in reconstructing a sense of self that both maintains a piece of the people we were before brain injury as well as reflects the new people we are afterwards.

Richard continues:

“And I get so frustrated with myself. I used to be this basketball player, I was this D-1 college player, you know. I was fantastic, strong, lean. I could do anything I wanted. And now, well just look at me. I don‟t recognize this person using a walker to get around. I can‟t dunk a basketball anymore. I can‟t even tell you where I left my basketball. . . . Probably the garage . . . I can‟t remember details hardly at all anymore.” (Richard, February 2, 2014)

Richard shakes his head and looks down at the table. His eyebrows furrow as he contemplates all that he’s been through with his two strokes, all that he continues to endure on a daily basis. It’s clear from Richard‟s account that he occupies a liminal space of identity, where he is neither the person he was before his brain injuries nor is he fully recovered from them. He communicates this in-between feeling by speaking about his identity with past-present language: the former person he “was” before his injury and who he “is” now.

In the years immediately following my brain injury, I struggled to reconcile my identity as a young, popular, and able ice skater with my new role as a helpless, rejected, and lost 11-year-old. It was in this liminal space that I wandered for a long time, and Richard now finds himself there too.

The space isn’t clear or straightforward; it’s neither black nor white; it’s not made up of the people we used to be, nor is it made up of society’s perceptions of what brain injury survivors should look like. Rather, the space is an identity all its own. It is gray, changing, and undefined.

As my interview with Richard continues, our conversation strays from the questions I had prepared in advance to ask him. We speak less formally and more like old friends swapping battle stories of coming to terms with what we’ve experienced. He shares intimate details with his struggle to “find himself once more” at his advancing age, and I’m amazed at his strength to rehabilitate not only his body, but also his identity at this point in life. The journey to reconciliation seems to be ongoing.

Richard describes rectifying the “old” and “new” versions of himself as “an uphill battle [he‟s] still climbing.”
I relate to this unsettled feeling of being stuck between two worlds, but I cannot help but wonder if the ordeal is even more challenging at his age, when he is no longer his young self, yet still unsure of what identity he is to assume in the future. I reflect again on the past-present dissection in his language: his “old” and “new” selves, the “battle” he hopes to win.

Why do we always use “war” language anyway? Are we battling ourselves or someone else?

This separation of past and present identities points to the liminality of identity after brain injury and survivors’ hope to leave it – to establish a “new normal” again (Harter, 2013).

When Richard speaks again, his voice is barely above a whisper. “Sometimes, it‟s so damn hard,” he finally offers, “and I want to just give up.” His left hand falls to the table in a gesture that suggests defeat, causing his right hand, affected by the paralysis and clutching the chair, to shake at the sudden outburst of emotion.

Participant Melanie relates to Richard‟s experience. A 25-year-old with a TBI after being hit by a drunk driver, Melanie looks forward to the day when her life will gain a feeling of “normalcy” again. She knows she is stronger as a person for enduring the TBI, but she struggles at times with a feeling of uncertainty for who she is post-brain injury.

Melanie says:

“I see myself as resilient, as being able to get up even when I am continually knocked down by reminders of what I can‟t do and the limitations my brain injury has put on my life. It’s made me look inward and realize that I‟m okay with just being and not “doing‟ right now, but it still wears on me sometimes. . . . I‟ve struggled with accepting and identifying as someone that has a brain injury. It’s so invisible, even to myself sometimes.” (Melanie, February 18, 2014)

Although Melanie and Richard accept their states of “becoming” and “being,” they await the day when they no longer feel liminal and can “do” again.

Similarly, Sarah, a 25-year-old who suffered a TBI from a rollover car accident, echoes the sentiments Philip and Melanie share. She has lived with the repercussions of her brain injury – namely memory loss and cognitive deficits – for five years, but she still has difficulty coming to terms with who she is now.

Sarah expresses:

“If I don‟t plan out everything on my schedule the night before, I have no idea where I‟m supposed to be. That‟s not how it‟s supposed to be for 25 years old. And that‟s not how it was before the drunk driver hit me. It‟s like I‟ve had this personality transplant I didn‟t ask for. I wake up each morning thinking maybe I‟ll be who I was before, but I‟m not. Some days I don‟t recognize who I‟ve become.” (Sarah, January 22, 2014)

Sarah‟s story illuminates the “gray” space between her identities of life before a brain injury and life after one. She recalls times of wishing both the brain injury and its effects on her sense of self “would all just go away.” Which is a feeling I can understand, too.

In the months following the AVM bleed, I begin the sixth grade as I normally would have, but with a slightly shorter school schedule that allows me to continue physical therapy and get the rest I need. Even with the help offered to me at school, the “new normal” of life with an AVM is not easy to adjust to, specifically as it affects my sense of self. When I looked in the mirror, I no longer see the smart, popular ice skater with lots of friends. Rather, I see a lonely, struggling girl with limited ability and a lazy eye. My vision and eyes – or more accurately, eye – are perhaps what bother me most. The AVM has caused “double vision” in my eyes, which presents itself in my right eye wandering upwards. Whenever I look at myself, whenever others look at me, they don’t see the strong, able person I once was, but rather the scared, incapable, lost girl I now see too. I desperately try to hold onto my former identity, but the proof that I am no longer that girl shows in my own eyes.

Loneliness replaces my former group of friends, and fear takes the place of my confidence.

Looking back on my scared 11-year-old self, I still identify with part of her. Although one surgery has helped my eyes cosmetically, the double vision lingers as a reminder of the AVM everywhere I look.
Recently, I was asked about my AVM and double vision by a colleague, and I described to her the misaligned look I once had in my eyes. I recounted the physical and emotional pain I experienced during that time. As I finished describing my odd appearance, she interrupted me.

She laughed out loud.

“Oh, my God,” she chortled. “That‟s hilarious. I can‟t believe you had a lazy eye.”

Well, “hilarious” isn’t the word I would use.

Suddenly, I felt no different than I did at 11 years old. I thought I had left that shell of a lost girl in my past, but now I identified with her as closely as ever I had. I tried to tell myself that I have come a long way since that former identity, but my colleague‟s laughter still rang in my ears for the rest of the afternoon, a stinging reminder of the liminal space I occupy.

One possible explanation for why my fellow brain injury survivors and I describe our identity in a liminal space with our words (e.g., describing that we are “in recovery,” “still climbing,” or “maybe I‟ll be who I was before”) is that we are employing a defense mechanism to protect ourselves from misperceptions and misunderstandings from society.

Or even shame from ourselves. We are very much striving to achieve or maintain our “new normal” after traumatic injuries, and we do so by carefully selecting language which lets others know that what they see in us – physical, emotional, or mental hurt – is not the identity we had before our injuries, and it is not who we will be forever.

Gray matter and questions and searching for answers

I walk in to the dimly lit room where SBIF (Southwestern Brain Injury Foundation) holds its monthly support groups, and I survey my surroundings. A group of people sit together in folding chairs near the front of the room, while a small table in the corner boasts sparse refreshments: a coffee pot, Styrofoam cups, a humble container of pastries.

Unsure of what to expect from the support groups with this first visit, I am immediately welcomed by an elderly man sitting at the check-in table by the door. His round, thick glasses sit atop his wrinkly nose and tell me that he must have vision problems similar to mine.

I assume he has survived a brain injury as well, and within minutes, my suspicion is confirmed. Bob enthusiastically shakes my hand and begins to tell me, unabridged, about his journey with brain injury. The sudden stroke, the hospital stays, the challenging recovery. I wonder if all the participants at SBIF will be as willing as Bob to share their stories with me. How do individuals with brain injury describe social support? How do they and I use stories to make sense of our experiences of social support? What identities do individuals construct in their stories?

I began my research with these questions in order to familiarize my audience with the multiplicities of plotlines and contexts that individuals face in reconstructing their lives after a brain injury. As my findings emerge, I interweave observations of the interviews and participants‟ stories with my own narrative.The challenge of dividing narratives into separate codes (findings) reveals the complex, interconnected nature of identity and the convoluted space of identity reconstruction.

I examine the multifaceted communicative interactions of identity reconstruction that develop within the contextual framework of social support. Excerpts from narratives unfold from and within my findings to reveal the intricacies of reconstructing and maintaining the self after brain injury. As my fellow participants and I continue to negotiate the role of brain injury in our lives, the excerpts from our stories and narratives show the process of identity reconstruction and the communicative interactions of social support inherently involved in narrative (Clandinin, 2013).

I structure the findings by first introducing participants‟ communication of a liminal identity, which sets the tone of the data: not black and white, but in shifting, varying tones of gray. I then open my findings with the first pattern that appeared in my data: grieving the loss of the former self. Next, I present our experiences searching for social support, and the role they have played in shaping our identity; these include negative experiences in which we lack social support. I then move to finding social support, which involves positive experiences in which we have strong social support from other brain injury survivors and others who offer empathy. Next, I focus on the labels of disability and injury, which we communicate as brain injury survivors. Finally, I conclude my findings – and the trajectory of identity reconstruction – with the shifting identities in brain injury survivors, including the uncertainty we experience with unexpected changes in our lives.

I begin with the first category, which launches the identity reconstruction trajectory as well as conveys my participants‟ and my experiences with liminal identity.

How it all started + 4 findings

When I was 11 years old, I experienced an arteriovenus malformation (AVM) bleed. Due to the AVM‟s size and location deep in the thalamus of my brain, I was fortunate that only the left side of my body was paralyzed and the nerve controlling my vision was affected (leaving me with what I have come to call “double-vision” in my eyes). In the years following this stroke-like injury, I’ve undergone physical, occupational, cognitive, and nearly all other therapies to rehabilitate and gain strength in the left side of my body. One round of radiation eliminated much of the AVM in my brain, and one eye surgery has helped repair some of the damage to my vision.

Through the years of physical and emotional recovery, I’ve experienced countless doctor appointments, hospital visits, consultations, diagnoses, types of social support, and attempts to communicate my changed identity to loved ones, friends, and doctors.

I once counted that I had 17 doctors and medical professionals. Can anybody else out there with a medical A Team?

I’m not the only one who’s had to struggle. Hundreds of thousands of individuals experience brain injuries every year; the cycle just continues.

From struggling physically and emotionally, to years of loneliness and coping, to meeting and hearing from other brain injury survivors, this blog is a place where I’m sharing memories, experiences, stories, my own developing narrative, and even occasional advice (varying in seriousness). I’m also sharing other people’s experiences, who have kindly allowed me to use their stories to shed light on what it’s like reconstructing identity after surviving brain injury. The stories range in emotion, but the experiences are stitched together by a common thread of realness and truth.

From my thesis research, I specifically found that brain injury survivors tend to experience 4 different aspects of identity reconstruction following/during brain injury and recovery. I’m sharing these themes with you now and expanding on them in future posts:

1. “I‟m still grieving”: Communicating grief for loss of the former self

2. “That doesn‟t work for me”: Searching for social support

3. “The brain injury society”: finding social support

4. “I‟m not broken”: Resisting [reconstructing] the disability label

Book-ending these four categories are communicating a liminal identity (feeling in-between the pre-injury and post-injury self) and communicating the ongoing changes that are inherent with surviving brain injury.

Can you relate to any of this? Let me know what you want to hear more about, and I’ll start there!

Talk soon. x