Brain Injury Survivors: Narratives of Rehabilitation and Healing Laura Lorenz, Lynne Rienner Publishers Page 10 of 10

The pictures themselves could be given so many different narratives. You might see them differently another time. The “new self” concept is very true. Using the word “healing” instead of “recovery” is very important, because when you get stuck wanting to be your old self, it only leads you to frustration, and takes away from acceptance.

A lot of the other [photovoice] participants had very similar experiences they wished to share. Like David S., you know, “people who left, people who I thought were going to be there, who after the accident were nowhere to be found.” That was shocking, shocking. People you thought were your friends. It’s like you were damaged goods or something. Shocking. So, yeah, “hibernation and grief.” Now, every little thing, though, as you go forward is a huge victory.

“Loneliness and light,” yes. But also, it was hard to go out and my speech was so bad. People thought I was retarded. So people would talk really loudly, “do you need help?!” And some people were actually really mean. Like, mean, mean, mean, laughing and pointing. So that was hard, too. I had a sensibility of an accomplished professional, who now couldn’t read, couldn’t speak, and that was hard.

“Habits of successful coping practiced in the context of the group are forming a bridge.” That’s true. “Memories of successful coping are taking root.” That’s true. “Light and dark” seems to be appropriate. . . . I think this is a good and accurate thing of me and what I think and what’s going on.

It’s still true. A lot of the struggles are similar, but I just have a better expectation. There is that sense of grief and loss, and instead of staying there and feeling hopeless, I go “okay, well, so.” You know, I used to run, in races and stuff, 10Ks. And now, I can’t, but I have a treadmill, and I can hold on to the sides, and I can walk, at a pretty good pace even on my treadmill. So that’s something, you know. Instead of bumming out that I can’t run, I just can go on the treadmill and I can hold on to the sides. I think I spend less time mourning and more time getting something done.

“Old self, new self. Not completely at ease with my life.” Yeah, because I want to be able to contribute, you know. That’s one of the nice things about photovoice.

“Participating in this study appears to have provided Peggi with an opportunity to make visible and communicate a restoration of coherence that she has been striving for and experiencing for some time.” Yes, it was a whole series of steps. But this [photovoice] is one that I probably wasn’t ready to do, earlier. The thing that really got me in motion, and I was really not in motion, I was really stuck, and hopeless and helpless, and stuck, was the expressive therapies class [offered through the support group]. That class did make me go from being really stuck, really lost, like hopeless, to, you know, I can do stuff. Even with photovoice, I thought, “I don’t know, do I want to do this?” But every time I have taken the initiative to go do a thing that was offered, it has brought me hidden benefits I did not anticipate, that I wouldn’t have believed could really come out of doing it.

Peggi wanted to use the opportunity to respond to her chapter to communicate something “of importance” to other survivors and their families. Peggi’s interest in the advocacy and outreach aspects of photovoice grew over time. She has spearheaded extensive outreach work by the photovoice group, including initiating a Veterans and TBI program at the Newton Free Library and photovoice exhibits at a neurology conference and a stroke rehabilitation awareness day at a Boston-area hospital. In support of her ongoing efforts to generate awareness of TBI and its consequences, I include her message to survivors and their families as expressed during our discussion of her chapter:

The single most important thing that I would try to tell other people who have brain injury, or friends and family of those who do, is the confusion and anxiety and depression that initially is accompanied with every step. Because you don’t know, is this going to be it? And most of the doctors say, “that’s it, you don’t really get much better. Within six months, you’re pretty much peaked at how better you’re going to get.” [As time passes], though, that sense of loss and anxiety and depression and just grief, is [there], but it’s only for a fleeting moment. You go, “I think I can do this,” and then you realize, “I really can’t do this.” And instead of becoming immobilized with that grief, you go, “That’s right, I need a nap.” Or “I need to bite off a smaller bite. I’m not that old person. I’m a new person, and I’m going to employ the strategies I’ve used.” And you can still get all the way through it [the task at hand], just not like you thought you could. And that piece, of hope, is the single most important thing. . . . Brain injury doesn’t mean never, it means just not now, maybe. And maybe not ever, but at least I can get a rung on the ladder, I can hold on to something and try to get better.

One of Peggi’s photographs and its accompanying narrative became the theme for the TBI photovoice exhibit. They echo the sentiments that Peggi expressed above and reinforce her message that it takes time and action to heal in the face of uncertainty and loss. Perhaps, as Peggi intends, this new photo and its caption will inspire hope in brain injury survivors, their family members, and their providers.

It’s a muddy, rutty, hands-and-knees crawl up to the first rung of the ladder that begins to make some semblance of sense — and then you get to begin to really struggle. The climb does not and will not end. There is no final healed bone or mended tear of the skin to get over. Sometimes weekly, and sometimes daily there is a new step to attempt to get to your “new self.” You can’t even ever hope to get back to your “old self.” Oh well! Maybe there will be a good view on this journey that I hadn’t expected.

Excerpted from Brain Injury Survivors: Narratives of Rehabilitation and Healing, by Laura S. Lorenz. Copyright (c) 2010 by Lynne Rienner Publishers, Inc. Used with permission of the publisher. To order the book, visit the publisher's website, www.rienner.com.

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