I’m not broken (Findings, part V)

“For stigmatized people, the idea of normality takes on an exaggerated importance,” Davis (2013) explains (p. 148).

For this group of individuals with brain injuries, reconstructing identity around injury over disability serves as a problem-focused coping strategy that helps them eliminate the stress and uncertainty involved with brain injury and regain a semblance of normalcy in their lives.

Choosing between injury and disability points to survivors’ process of identity reconstruction.  Adhering to “injury” over “disabled” seems to help many people understand their limitations as “not [their] fault” and as “still in recovery.”

Carly completely agrees with the need for distinguishing between injury and disability, and for the first time during our interview, I see her become suddenly enthusiastic about an issue.

The excitement in her eyes juxtaposes the demure personality she has displayed throughout the first half of our meeting, and soon I learn the reason for her sparked interest, even anger.

The “disability” label is something she “fight[s] against all the time,” she tells me, eager to tell me more about the stereotype.

Carly describes:

“I had a brain injury; okay, technically I still have one, right.  Whatever … I’m still the same me…  I don’t want other people to see me as disabled, you know? I’m just slightly less capable than everyone else. Does that mean I have a disability?  Well, it shouldn’t.  There’s a difference between being disabled and being brain injured.”

Is there? What’s the difference?

When the participants of my study see their injuries as still in recovery, they see room for improvement and someday moving past their injury, whether or not that’s actually possible; they see opportunity for positive coping, even though it might involve ableist thinking.

Weiten and Lloyd (2008) describe problem-focused behaviors as actions pointed towards diminishing or eradicating stressors, which is what participants are doing when they eschew disability labels – they eliminate stress from the stigma that they perceive as associated with disability, and therefore feel they cope better with the stress of living with brain injury.

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I’m not broken (Findings, part IV)

By identifying with having an injury instead of a disability, Melanie sees her limitations as something she can overcome. In her perspective, injury is less permanent than disability, and she feels more in control of her situation if she doesn’t consider her condition a disability.

It’s interesting that Melanie’s account, as well other participants’ stories, eschews the label of disability.

I’m a big believer in “to each his/her own,” but isn’t that kind of ableist thinking – precisely counter-supportive of people who have experienced medical hardships like our own?

It’s communicating a negative perspective of disability, at the very least.

My brain injury survivor participants view disability as a fixed and static identity marker that makes a person “broken,” when they have semi-permanent and permanent disabilities themselves.

Research, on the other hand, suggests a more dynamic understanding of disability than my participants do: that it’s flexible, performative, and (re)defined through our activities every day(Davis, 2013; Lindemann, & Cherney, 2008).

Dissociating from disability, then, is not only ableist, but also dis-empowering to those who do have a disability.

It’s interesting that six of the seven participants empower themselves by shunning the disability label, effectively looking down on others and what it means to have a disability.

What are your thoughts?

Melanie’s story echoes Sarah’s experiences dissociating between injury and disability. Sarah expresses:

“A lot of people don’t understand.  What I hear most is ‘Oh, you look fine.  You’re not suffering from an injury or disability.’

“I think people mean it as a compliment or to somehow tell me that – well, I look good…

“And really that is just the most frustrating thing because brain injuries are invisible, and people forget that it’s not something I’m ever going to get over. In my mind, it’s not a disability, but it is a permanent injury.”

My people: The brain injury society (Findings, part II)

“So my boyfriend’s pretty much the only one who gets it.  Unless you’ve had a brain injury, people don’t get it.  They can’t help it, but they just don’t.”

I nod as I listen to Sarah‟s story, knowing exactly what she means. Besides my family, who has seen me through my entire brain injury, I have few people who truly understand my trials in surviving and recovering from brain injury.

Though it’s difficult for my fellow brain injury survivors and me to receive the proper social support from individuals without brain injuries or support groups that don’t fit our needs, we still recognize that there’s something different about connecting with others who have had similar medical experiences.

Finding people who can comprehend and relate to the magnitude of our experiences is rare, and we value our relationships with those folks when we do find them.  For as many destructive accounts of social support I found in meeting with survivors, there was an equal number – 16 of 16 – with descriptions of encouraging experiences. These experiences seemed to occur from social support offered by other brain injury survivors or by individuals very close to us.

See? I said it would get better.

My people: The brain injury society (Findings, part II)

When Melanie didn’t benefit from the support groups from SBIF, she sought other groups and went to great lengths in search of the proper support she needs.  When she couldn’t find people with brain injuries, experiences, or age similar to her own, she went online to find support groups that better suited her.

(No big surprise. That’s what we’re doing here.) But, she tells me:

I‟ve done art therapy for brain injury survivors.  I read their stories online, watch documentaries, and email with people who have suffered TBI.  I’ve never even met them, but they understand.

“As much as my friends and family try to understand and be supportive, on some level they still don’t get it because they haven’t been through it and they can’t relate. Hearing others speak about their injuries helps me understand mine better. I think it also gives me hope that I will continue to improve.”

When SBIF’s support groups didn’t suffice, Melanie continued her pursuit for social support. She’s thankful that the Internet has put her in touch with others who have similar experiences to her own and are also in the same phase of life.

“It helps to know that there are other women like me, who are my age, you know,” Melanie continues, “dealing with TBI while simultaneously managing everything else we experience at this age.”

My people: The brain injury society (Findings, part I)

“I call it the Brain Injury Society,” Douglas tells me, smiling as he explains his relationship with people who’ve also had brain injuries.

“I call it The Brotherhood,” I smile back.

Side note: Do you have a name for the people who get you?

              “They just get it better.  Simple as that,” he says.

Douglas’s “simple” explanation essentially does sum up survivors’ experiences as concisely as possible. The brain injury survivors I met shared stories of reaching out to others with brain injuries to be “reassured” and to “know that these things are normal.”

“My boyfriend has been with me through it all – the car accident, the hospital, everything,” Sarah tells me.

She sighs as she takes in the weight of that statement, knowing her own Brain Injury Society of support is very small.

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.