After Brain Injury: The Myth of “Try Harder”

How often have you heard, “If only you would try harder….” after your brain injury? Have you said it to yourself? Or to another person with a brain injury? If you’re a family caregiver, what do you say to those who say it to your loved one? (Or have you said it? I said it to my husband, early on after his TBI, not yet understanding the reality of brain injury.)

This poignant poem comes from David Grant, my long-distance friend, colleague, and writer for Brain Injury Journey – Hope, Help, Healing. He sustained a traumatic brain injury some years ago, and has become a true inspiration to many fellow travelers, especially through his Facebook page, TBI Hope & Inspiration. Thanks, David!

Have a look at David’s poem and then choose one or two of the journaling prompts below to explore your views on “try harder.”

Maybe things can be different if I TRY HARDER

by David Grant

 

If I try harder…

to be the old me, maybe many of the friends I have lost since my TBI will come back. Maybe.

 

If I try harder…

to remember what I just said, perhaps people will have a bit more patience with me because I repeat myself a lot.

 

If I try harder…

to not be so “different,” maybe my children will come back into my life. Maybe. They are the biggest unforeseen casualty in all this. My soul aches for their loss.

 

If I try harder…

to remember what I just said, perhaps people will have a bit more patience with me because I repeat myself a lot.

 

If I try harder…

to be less of a burden to you, maybe the sadness I see in your eyes and feel in your Soul will lessen. Even just a little a bit.

 

If I try harder…

to try to work on my restraint, it might be easier. So often these days, I speak first, and then think. I know it effects you, so I’ll try to try harder.

 

If I try harder…

to be more like the old me, it might be easier for you. I don’t even know the new me. How can I expect you to?

 

The reality is that there is no “trying harder” living life with a TBI. The solution might just be to “try differently.”

 

Many things that worked in my life before brain injury have quietly slipped away.

 

Such is the nature of living with an unseen disability.

 

The reality is that I cannot try harder. I’ve given all that I have, and more, in my ongoing struggle to regain a foothold on my life.

 

I will be trying “differently” for a while.

 

Trying harder? Just another TBI Myth.

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Be sure to subscribe to the first magazine for the entire brain injury community, Brain Injury Journey – Hope, Help, Healing. A digital subscription delivered to your email is FREE, or you can have the paper edition for $48/year. Click here to subscribe, advertise, or order a sample copy. The first issue will be available in early April 2013. 

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If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

 

If you’ve had a brain injury:

There is more to your life than brain injury, so try one of these prompts to explore other areas:

• I’m already trying my hardest and…

• If I try any harder, I’ll…

• I’ve found that trying harder….

• When someone tells me to “try harder,” I…

• Write your own poem about trying harder. Use David’s format and begin each line or stanza with, If I try harder…, and then add your own experiences.

 

If you’re a family caregiver:

There is more to your life than caregiving, so try one of these prompts to explore other areas:

• I’ve told (loved one) to “try harder” and…

• I’ve learned that it doesn’t work to tell (loved one) to “try harder” because…

• When someone tells (loved one) to “try harder,” I…

• I tell myself to “try harder” when…

• Write your own poem about watching your loved one trying harder. You can use David’s format and begin each line or stanza with “When I watch (loved one) try harder…” OR “If (loved one) tried harder…”

The Story of Brain Injury is Changing

Just as the story of a life changes after a brain injury, the story of brain injury itself is changing.

It used to be that in war, people who sustained severe brain injuries died. Now, thanks to better medical care, more of them are surviving (although we have to ask at what cost). Additionally, in Operation Iraqi Freedom and Operation Enduring Freedom (Afghanistan), hundreds of thousands of military personnel (and Iraqi and Afghan civilians) have sustained “mild” brain injuries, primarily  from blast exposure. As a result, many of them face permanent disabling changes in themselves and their lives, particularly since a great percentage of them still are not properly diagnosed nor receive proper care, more than a decade after these wars began.

Brain injuries in contact sports, particularly football, literally have come under the microscope. The brains of some deceased players from high school to the NFL are being studied, and this research has found that many of them suffered from a degenerative brain disease resulting from widespread microscopic damage.  Thanks to this research, it has become apparent that sustaining numerous subconcussive hits causes damage that, over time, can become catastrophic. Even high-school football players were found to have this devastating disease, called CTE, or chronic traumatic encephalopathy, which can be diagnosed only during autopsy.

Concussion is coming to be known as what it truly is: mild traumatic brain injury. It’s not simply “getting your bell rung” or “seeing stars.” It is damage to the brain. With proper diagnosis and care, people with concussion can often recover fully. The problem is getting that diagnosis right away and following up with adequate care. Sometimes symptoms don’t appear for some time, and even today, many doctors do not adequately diagnose a concussion, which doesn’t typically appear on imaging scans.

One thing that has not changed in the story of brain injury is that it can happen anywhere, anytime, to anyone. You don’t have to be in the military or play  football to sustain one. Falls in the elderly and motor vehicle accidents in adolescents account for a disproportionate number of brain injuries.

There is a positive side to this changing story. All the attention to brain injury has led to a huge jump in public awareness and to the amount of research devoted to the causes of brain injury, its aftermath, care, and prevention. We can all work to change the story of brain injury for the better by doing everything we can to prevent it.

Now, want to do some journaling? See the prompts below to get started.

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Be sure to subscribe to the first magazine for the entire brain injury community, Brain Injury Journey – Hope, Help, Healing. A digital subscription delivered to your email is FREE, or you can have the paper edition for $48/year. Click here to subscribe. The first issue will be available in April 2013. 

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If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

 

If you’ve had a brain injury:

There is more to your life than brain injury, so try one of these prompts to explore other areas:

• Now that Spring has arrived, I…

• Something I want to do more than anything…

• I am grateful for…

• If I could…

• When I can…

 

If you’re a family caregiver:

There is more to your life than caregiving, so try one of these prompts to explore other areas:

• Now that Spring has arrived, I…

• Something I want to do more than anything…

• I am grateful for…

• If I could…

• When I can…

After Brain Injury: Years Later, I Still Worry

In May 2002, soon after Ken proposed and I had moved in with him, he had a terrible accident that left him with most of his ribs broken, partially collapsed lungs, and a few other injuries, although none to his brain. I was in the ER as Ken was being treated, and at one point his heart rate fell below 20, and the number disappeared from the monitor. The doctors yelled, “Ken! Ken!” into his ear, with no response, for an eternity. I was sure he had died. But it was only seconds of bradychardia, or extremely low heart rate.

We married in March 2003, and exactly nine  months later, a hit-and-run left him with a devastating traumatic brain injury. We came to call this the “brain wreck.”

Both times, he left the house on a seemingly normal  day but did not come back. Both times, I was left alone with my terror and grief. Both times, I was catapulted into the role of caregiver to this man I love deeply, and it took some time for me to recover. And especially the second time, while watching him suffer, I suffered, too, both from seeing what he was going through and from my own fears and anxieties.

It’s been more than nine years since the brain wreck, and Ken has recovered to a remarkable extent. He’s healthy and loving retirement, and no other terrible thing has happened to him.

Yet I still worry about him, more than I would if the brain wreck had not happened. When he’s a few minutes late coming home, and I think, he should be home by now, my limbic system revs up as my body remembers,“Hasn’t this happened before?” and the stress hormones begin to flow. (Even writing this, the memory tightens my chest and trembles my gut.) So far, Ken has always come home again, and with the passing years, I don’t feel the panic start to build as much as it once did. I’m making progress.

This coming weekend he’s driving me to an airport two hours away. Our daughter will be with us on the day I leave (a stop at Trader Joe’s is in their plans), but on the day I return, Ken will come alone. And I worry.

He’s an excellent driver with a great sense of direction. But I worry because he still sometimes get confused in the midst of too much stimulation and distraction. Driving in an unfamiliar city—a big, busy, unfamiliar city—offers a lot of brain stimulation and distraction. Will it be too much for him? Will a bit of distraction lead to another accident? Will I be left at the airport, alone with my worries, with no way to know what’s happened to him?

Ken bristles at the notion that I think he’s weak or unable to take care of himself, which is not at all what I think. Sure, I want him to be careful for his own sake. But I’ll admit to wanting him to be careful for my sake, too. I have made my peace with the fact that I can’t protect him now, any more than I could protect him all those years ago. What happens, happens, and it does neither of us any good for me to worry or let my anxieties get the best of me.

But I don’t think I could bear another day when he doesn’t come home.

See some journaling prompts below.

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The Evansville Courier ran a wonderful article about my journaling workshops for people with brain injury and family caregivers this week.  You can see it here.

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Be sure to subscribe to the first magazine for the entire brain injury community, Brain Injury Journey – Hope, Help, Healing. A digital subscription delivered to your email is FREE, or you can have the paper edition for $48/year. Click here to subscribe. The first issue will be available in April 2013. 

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If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

If you’ve had a brain injury:

• It’s irritating that (my caregiver) still worries about me because…

• It’s okay to be worried about because…

• What? Me worry?…

• The brain injury left me more/less (choose one) prone to worry, and I..

If you’re a family caregiver:

• I still worry about (my loved one) because…

• I’ve learned to control my worry by…

• Worry is a useless emotion and…

• When I worry about (my loved one,) in my body I can feel…

After Brain Injury: Writing Rescues

That’s the way writing often starts, a disaster or a catastrophe… by writing I rescue myself under all sorts of conditions…it relieves the feeling of distress.

~~ William Carlos Williams

 

A brain injury and its aftermath can often feel like a disaster or a catastrophe for many people, especially in the beginning. When your life and the life of your family are turned upside down and inside out by a brain injury, it’s hard to look at your situation in any other way. It’s difficult to find rescue or distress relief at times of crisis.

Yet over the years, I’ve often been astonished at the way many people over time not only come to grips with the injury and its effects but also find satisfaction and contentment in their new lives. Perhaps some people are more resilient or more attuned to looking at the bright side no matter what, or they determine that they are going to do whatever they can to make the most of their new situation. Whatever the reason, they come to accept and acknowledge their changed reality and then move forward from there.

And, like doctor and poet William Carlos Williams, more people with brain injury and their family members are learning to rescue themselves and relieve their feelings of distress through writing. Formal writing programs, such as the Veterans Writing Project, offer the opportunity to write fiction, nonfiction, and poetry, often for publication in its literary journal, O-Dark-Thirty. Veterans, active service members, and their family members are able, sometimes for the first time, to tell their stories in a process that is therapeutic and enlightening. In addition, their stories become available to all of us, and so will not be forgotten.

And private writing, such as journaling done alone or in a facilitated group, has been shown in more than 200 studies to offer benefits to body, mind, and spirit to many different groups of people. I’ve seen it time and again in my journaling groups with people with brain injury and family caregivers. Occasionally, someone writes and discovers an insight or a surprise that gives them an immediate boost; more often, it’s the writing over several weeks or months that helps them find their way.

This process isn’t magical, but it can feel that way. No one yet really understands why writing can rescue us, why exploring our deep thoughts and feelings on the page can relieve our distress, but it does.

I invite you to write your stories, small and large, in a journal. It need not take a lot of time, and even short writing sessions a few times a week are helpful. In addition to having a record of where you have been, you can start a roadmap to where you want to be.

See below for some ways to get started.

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Be sure to subscribe to the first magazine for the entire brain injury community, Brain Injury Journey – Hope, Help, Healing. A digital subscription delivered to your email is FREE, or you can have the paper edition for $48/year. Click here to subscribe. The first issue will be available in early April 2o13. 

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If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

 

If you’ve had a brain injury:

• My brain injury has meant that I…

• Living with a brain injury is not easy, and that’s why…

• One blessing in disguise delivered by my brain injury…

• This struggle with brain injury has…

• Living with a brain injury is no picnic, yet I…

 

If you’re a family caregiver:

• Caring for (name) has meant that I…

• Being a caregiver is not easy, and that’s why…

• One blessing in disguise delivered by (name’s) brain injury…

• This struggle with caregiving has…

• Being a caregiver is no picnic, yet I…

After Brain Injury: Life as a Wife and Caregiver

Brain injury affects the entire family. Relationships change. Finances and employment can change. The familiar story changes, leaving us feeling adrift and isolated. It’s a big adjustment for everyone, and not all families or family members are able to adjust. Yet some are, and they learn to create good, post-injury lives.

One of those people is Terri Hicks, who is both wife and caregiver to her husband, Mike, who sustained a severe brain injury several years ago. They have both attended my journaling groups, so I knew some of their story. Terri graciously agreed to answer some questions for me about her life today, and her honest, insightful answers cover important issues such as coping with a vastly different reality, self-care, mourning, resilience, strength, and love.

My huge thanks to Terri!

Below our interview are some journaling prompts for you, so you can explore your post-injury life as a caregiver or person with brain injury.

• When your husband sustained a brain injury, how long had you been married? How did your relationship change?

When Mike’s injury occurred, we had been married 29 ½ years.  Mike is, and always was, the love of my life. We basically grew up together. We got married in our teens, so not only is he my husband, but also my best friend. Our relationship changed quite dramatically, and it took some time for me to adjust to our “new normal,” which put me in more of a caregiver role and less of a partner role. We are 5½ years out from Mike’s very severe TBI, and slowly, since the accident, some of the partnership has returned, but due to the extent of his injuries it will never be the same relationship that it was before. I don’t say that in a negative way, but in order to continue to function in a relationship impacted by TBI, one does have to face that the relationship that once was a reality is not likely to be the same as pre-injury. It isn’t that we haven’t adjusted to our new relationship, and there are still snip-its of the pre-TBI relationship sprinkled in here and there, but it will never be the same as pre-injury.

• Once the reality of your “new normal” set in, how did you as Mike’s wife and now caregiver cope with it?

There are a few reasons I was able to cope as well as I did. First, I have a very strong faith in God. I know that I may not understand why something has happened, but I have faith that through trusting in God, it will all work out. Second, I had (and continue to have) very strong extended family support, without which I could not have continued to work or been able to push for Mike to get all of the therapy available to him.  Third, I am a very strong-willed person. When someone says “you can’t” or “it won’t happen,” it just challenges me to make it happen and be more determined to accomplish whatever it is I am trying to do. And lastly—and this took a long time for me to learn—I now take time for myself. I get away for a few days, or my husband goes and stays with our daughter for a week or so and I get a little time to just breathe and take care of me. At first, I felt guilty for wanting/needing some time away from the situation, but I have learned that I am a much better caregiver when I take some time to rest and rejuvenate a little. Being a fulltime caregiver can overwhelm you, and you have to remember that you can’t take care of your loved one if you aren’t taking care of your self emotionally, spiritually, and physically.

• What was required for you to come to terms emotionally with your changed life?

Coming to terms emotionally with my changed life meant that I had to mourn the life I lost. I really believe when someone’s life is changed so dramatically in a blink of an eye, that it is vital to go through the stages that one goes through when there is a death; shock, pain, anger, bargaining, depression, reconstruction, and acceptance. If you try to suppress these feelings, they will continue to keep you from being able to move forward and learn to find some happiness in your changed life. I did not want to be defined by this accident. It had taken so much from me, my husband, and my family already, and I refused to let it continue to have a hold on me, but in order to get to that point, I definitely had some dark times where I just needed to cry and just needed to mourn the loss of a very happy stable life that once was so I could look to the future.

• What were some of the things you did to take care of yourself then? Now that it’s been several years, has your self-care changed? How?

In the beginning, my husband could not be left alone, so my family members and our friends would come over for a few hours and stay with my husband so I could just walk around the mall, go to lunch with a friend, or take a little extra time at the grocery store. I will say that that has changed in the past year or so. I can now feel comfortable leaving my husband for a little longer. I am an avid walker and love to hike a few times a week. Up until a about a year ago, if Mike didn’t want to go with me I wouldn’t go, but now if I want to go (because I NEED exercise for not only physical health, but emotional health), I take off and go…and Mike will usually tag along because he doesn’t want me to go by myself…so it ends up working out for both of us, because we both get some exercise. I also take 2-3 day trips with my daughters, leaving Mike with a family member to check in on him. I have realized that it is okay for me to do that in order to be a better caregiver to Mike. Mike was 47 when this accident happened, we hopefully have many years to look forward to together, and if I am unable to take care of myself, I will not be able to take care of him for the long haul.

• How honest were you with your children, some of who are adults, about what had happened to their father? How did they react?

I was as honest as I could be from the very beginning. This was new territory for all of us, so none of us knew what each day would bring, or ultimately, what type of future Mike would have once he survived the initial physical traumas of his accident. My oldest daughter is a radiologist, so she was very aware “medically” of what her dad’s injuries were. Our middle daughter, who fainted at the sight of blood, became one of the strongest, and most formidable caregivers to her dad in the days, weeks, and months to follow, and our son, who was 14 when his dad’s accident happened, probably was impacted the most negatively in the immediate aftermath of Mike’s injury. We had adopted him at age 7, and he was just starting to build a father and son bond with his dad, and that was ripped from him that day. For a while he became very reclusive, and sometimes seemed annoyed by how his life had changed. I have always been a very outspoken and sometimes brutally honest person, and I handled this in the only way I knew how: to tell the truth. We did not know from one day to the next what Mike might be able to do, or if he would ever even come home. Obviously, things were explained to my son differently than they were explained to my two daughters, who were older, but this was a learning process for all of us; none of us knew what each new day would hold, so we grabbed on to any information we could as we navigated through the tragedy that is TBI. I don’t think I would have even known how to “soften” the information I gave my kids, because there was nothing “soft” about it. We were on an unknown journey together, and we all needed to have the facts in order to be able to process what had happened and be ready to face the unknowns that were to come in the days, weeks, and months to follow.

• What advice or guidance would you give to other spouse/caregivers in similar situations?

1. Don’t be afraid to ask for help. It takes a lot of strength to let go and allow yourself to accept help. It is vital to your ability to cope for what is likely to be a very long and difficult road.
2. Even though it might be difficult to learn certain “facts” about TBI, read as much as you can, not that everything you read will apply to your situation, but you may learn something here and there that will help you navigate through this tangled web of TBI.
3. Don’t give up: if you listen to every negative thing you hear, and then believe it, you may give up on something that is attainable. I remember reading that I should not expect any real improvement in my husband’s condition after a year…and we are 5 ½ years out and he is still improving! Just think of the person you love as yourself—no matter how old you are, you CAN continue to learn new things, so can the person with a TBI.
4. Learn to appreciate the very small increments of improvement you see…they are monumental to the person with a TBI.
5. Take time for yourself. In doing so, you are ultimately helping the person you are trying to take care of.

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Be sure to subscribe to the first magazine for the entire brain injury community, Brain Injury Journey – Hope, Help, Healing. A digital subscription delivered to your email is FREE, or you can have the paper edition for $48/year. Click here to subscribe. The first issue will be available in early April 213. 

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If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

 

If you’ve had a brain injury:

• My relationship with (name) has changed because…

• Write a letter to your spouse/partner/caregiver, explaining what you appreciate about him or her. Begin: Dear…

• Coming to grips with our new life after my injury required…

• One good thing I could do for my (spouse/partner/caregiver) is…

• To do that good thing, I can…

 

If you’re a family caregiver:

• How did your relationship with your loved one change after the brain injury? You can make a list, and then choose elements from it to write about. Or simply begin with: Our relationship changed…

• Write a heartfelt letter to an aspect of your life that has changed as a result of becoming a caregiver. Those aspects include relationships, activities done together or separately, employment, friendships, health, etc. Begin: Dear….

• Coming to terms with our new reality required…

• As a spouse and caregiver, I most would appreciate guidance on…

• I could get that guidance from…

• To take good care of myself as I care for another, I…

After Brain Injury: You Are Still the Author of your Life

“If you want your life to be a magnificent story, then begin by realizing that you are the author and everyday you have the opportunity to write a new page.”  

                                                                                                    ~~ Mark Houlahan

I recently came to know David A. Grant through his advocacy work for people with brain injury. A survivor of a harrowing cycling accident in 2010, David openly shares his experience, strength, and hope as a brain injury survivor. He is a writer and the author of Metamorphosis, Surviving Brain Injury,  and he created the TBI Hope and Inspiration Facebook community.  David and his wife Sarah live in New Hampshire.

David graciously agreed to write about his life after TBI and provided truly inspirational answers to my questions. He is a marvelous example of becoming the author of his own life and writing his own “magnificent story” after his injury.

At the end of David’s interview, look for the journaling prompts to help you explore being the author of your own life.

• What was the biggest change in your life caused by the brain injury?

Prior to my TBI, I was blessed to have a wide range of life experiences that made for a very unique and meaningful life. From watching lava flow into the ocean from Mount Kilauea at night time to chasing my dreams as an endurance cyclist, my life was measured by extremes. A Type A personality from the get-go, the thrill of a vibrant life full of diversity and excitement was something I cherished.

Singularly, the biggest challenge I faced was my inability to play any type of meaningful game of connect-the-dots with any prior life experience.  Not only was I completely unaware how pervasive traumatic brain injury is in today’s world, once I was “officially” diagnosed with a brain injury, I was still clueless as to how all-encompassing living life with a brain injury actually is.

In the past, I was a chronic overcomer. I overcame obesity and was able to beat diabetes. When I was presented with the diagnosis of being a traumatic brain injury survivor, I planned on beating TBI as well.

As anyone familiar with TBI knows, there is no end-game. Daily I now work to coexist with TB

• How did you come to accept that you now had a different life? That you were different than you used to be?

My wife Sarah and I live near the New Hampshire seacoast.  Occasionally we take a short ride to the coast. There is something healing about just being near the sea. If our timing is right, we have the opportunity to be there at sunset and watch as the sun sets over the salt marshes to the west. The sky changes from deep blue to reds, pinks and orange.

Unlike just shutting of a light switch, the change in the sky as dusk is gradual and takes place over time.

And so it was as the sun set on my old life. There was no “instant change” as a result of my cycling accident. As my broken bones and damaged body started their slow crawl toward healing, the extent of how I was changing slowly became apparent.  Like a sunset on the New Hampshire coast,  I transitioned slowly, over time, into a new and vastly different life.

As far as accepting this new life, that is a tale unto itself. I fought it, kicking and screaming, through most of the first year.  Early on, I shared with Sarah that I did not want to be “that guy.”  When she asked what I meant, I let her know that I did not want to be known as the guy who was never the same after the accident.

The good news is that most of the time,  I am now OK with being “that guy.” Acceptance came gradually over a couple of years, but it did come.  As time passes, I find myself forgetting who I was before the accident. It’s hard to miss someone you don’t remember.

• How do you view life now, compared to your view before the injury?

Common to many TBI survivors, my “emotional filter” was compromised when I was hurt. I am about to share something that would have shocked me even a year ago. There are some changes in my life since my TBI I have come to LOVE.  My pace has slowed. No longer do I run from one task to another to another, ad infinitum. I feel like I am able to savor life at a level I have never known before.

Often now, while Sarah and I are out and about, I see her in front of me, looking back, waiting for me, as I take a bit longer than I might have to experience wildflowers on a hike, or to watch children just playing.  Life has become much more immersive.

I’m more inclined to really share what is in my heart, holding back nothing. I laugh more heartily than I ever have and cry more deeply. My compassion for other human suffering has increased one hundredfold.  If I happen to see someone who looks like they might have some sort of life challenge, I often wonder if they experienced a TBI.  In one respect, I am able to view the “bigger picture” in ways I never thought possible and experience a level of profound spirituality now that often takes me by surprise.

• What is the best thing you did for yourself after the injury that helped you to move forward?

There are actually two things that stand head and shoulders above all else.

The first “best thing” that has offered the most help to me as I embrace my new post-TBI life was to get involved with a local support group. I speak about my first support group meeting in my book, Metamorphosis, Surviving Brain Injury.  By spending regular time with other survivors,  I have ended the feeling of apartness from the world at large. In my case, we have a monthly support group at a local rehab hospital. We also have get-togethers  in between our regular meetings.

The meetings at the hospital are wonderful as we get together, and those of us who have embraced solutions to best live this new life are able to share with newer members. The less formal meetings have occurred in members homes, at local restaurants and more.  And we have more fun than humanly possible. Think about it for a moment—a bunch of disinhibited folks getting together. Oh, the fun we have!

The other “best thing” that has helped me to move forward is something that has come to me over time. As I move forward in this new life, the scope of how large traumatic brain injury is still stuns me.  1.7 million Americans a year sustain a TBI. Yet, TBI was virtually unknown to me before my accident.  This is common with many survivors.

Called America’s silent epidemic, I have made it a big part of my life’s mission to end the silence.  Though difficult at times, I am open and candid about the fact that I have a TBI. From local press coverage of my book to being open in my social circles, I am up-front about having a brain injury.  I was recently called a TBI advocate. Mulling the concept for a couple of days, I have come to see that as an apt description.

By being open about my own TBI, and showing others that life, albeit different, can be rebuilt after a TBI, I am able to offer real hope to other survivors.  What higher life purpose can I ever have hoped for than to be of service to others facing the same challenges?  Not that it takes away all the challenges I face daily as a TBI survivor, but it does create a new sense of purpose to it all.

• What advice would you give to people coping with brain injury and to their family caregivers?

Simple. Life can be recreated after a TBI. Not the life you might have been familiar with, but a meaningful life, where you have something to offer someone, some way to help others. This is part of the new reality possible in a post TBI life.

I have met the most amazing people I never knew existed since my accident. People who have had hardships that dwarf my own experience, yet who have found a way not only to survive, but to thrive

They are my real inspirations.

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If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

If you’ve had a brain injury:

• Knowing that I am the author of my own life, I choose to…

• Make a list of at least five positive things you have done since your brain injury to recreate your life. If you haven’t yet done five, include positive things you would like to do.

• Choose one of those five positive things and write about it. Repeat with the others.

• I choose to be open about my brain injury because…

• I choose to keep my brain injury private because…

If you’re a family caregiver:

• Knowing that I am the author of my own life, I choose to…

• Make a list of at least five positive things you have done since becoming a caregiver to recreate your life. If you haven’t yet done five, include positive things you would like to do.

• Choose one of those five positive things and write about it. Repeat with the others.

• I am able to move forward after (name) brain injury by…

After Brain Injury: Keep Failing (and Journal About It)

“Keep on beginning and failing. Each time you fail, start all over again, and you will grow stronger until you have accomplished a purpose…not the one you began with perhaps, but one you’ll be glad to remember.”

                                                                                     ~~ Anne Sullivan Macy

Why in the world would I suggest that you keep failing after a brain injury? Because succeeding at anything generally includes failing first. Sometimes, failing many times is the best learning process.

The way you handle failure is all in the way you look at it. You’ve probably heard or read Thomas Edison’s comment on his long struggle to create a viable light bulb: “I have not failed. I have just found 10,000 ways that do not work.”

Anne Sullivan Macy, of the quotation above, was the teacher who helped the young Helen Keller learn to communicate and read. Anne never let her profoundly disabled—and very intelligent—student give up. She and Helen experienced many failures until the magical day when Helen learned to spell W-A-T-E-R with finger spelling. And from there she went on to accomplish great things and become a figure of inspiration for millions.

It’s the same after a brain injury to ourselves or a loved one. Relearning tasks we once took for granted or finding effective ways of coping with the stresses of caregiving takes time. Generally, we don’t get it right the first time. But if one attempt doesn’t work,  or a hundred or a thousand, we haven’t failed. We just yet haven’t found the way that does work.

When Ken was working to regain his skills and abilities after his TBI, particularly the cognitive ones, he worked very hard. In the early days, he didn’t do so well on the cognitive tasks presented to him by Kim, his inpatient speech therapist. But even after the TBI, Ken was determined to come back as much as he could. He never gave up, even though my exhaustion sometimes lead me to despair. He kept pushing himself, also while working with Susan, his outpatient speech therapist, and eventually recovered most of his abilities. (While this level of improvement is not possible for everyone, the point is to do the best you can.)

One of our friends with a brain injury has gone to college, determined to obtain a degree in a demanding field. He has had to take some of the more difficult classes a second time, but he has decided he will Not. Give. Up. For him, the failure would be in quitting school and forgoing his dream. Did he possess this kind of determination before the TBI? I don’t know. But he sure has it today, and that’s what counts. 

When I was caring for Ken nine years ago, and sometimes even now, I fail to be understanding about what he is going through and being compassionate about his struggles. But I continue to learn and expand my capacity for those qualities, not only for him but for others. I don’t consider myself a failure, just a human being learning some lessons from difficult circumstances.

What about you? How do you think about failure? Or success? Do you use failure as a springboard to more learning? Or does it discourage you? (I realize that brain injury can play a role in how you deal with these situations.) Use the journaling prompts below to help you explore these questions. Giving yourself the gift of a few minutes for this exploration can reveal insights and new information about how you approach failure and success, and how you might change those approaches for a happier life.

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If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.

 

If you’ve had a brain injury:

• When I’m not able to accomplish something, I…

• For me, failure is…

• For me, success is…

• I gave up on (fill in the blank) when…

• I kept going and finally succeeded with…

• My brain injury will not prevent me from…

 

If you’re a family caregiver:

• For me, personal success is…

• For me, caregiving success is…

• I feel I’ve failed when…

• I know I’ve succeeded when…

• I gave up on (fill in the blank) when…

• I kept going and finally succeeded when…