Big News!!! It’s Almost HERE!!!

After taking some time off from the blog to focus on finalizing things elsewhere, I have big news:

MY BOOK IS ALMOST HERE!!!

With two years in the making from conception to publication, my children’s book Daddy’s Different: A look at brain injury through a child’s eyes, will finally be available to purchase. This is not only a huge success for myself as a writer and spouse of a TBI survivor, but also a success for those other TBI families out there.

Thankfully, there are a lot of books highlighting the daily struggles of brain injury survivors and their caregivers.

Here are a few of my favorite:

Meditations on Brain Injury by Mike Strand

Written by a brain injury survivor, this book should be titled “The Brain Injury Bible.” It was the first book my husband read and completed post injury (reading is hard with a brain injury). The short chapters written in first person really connected with my husband as it seemed to say all the things he wanted to say but couldn’t. Check out Mike Strand’s blog.

Metamorphosis, Surviving Brain Injury by David A. Grant

Another survivor describing the secret world of brain injury; beautifully written as David was a writer before his injury. Thankfully he didn’t lose his ability to connect with readers. Check out David A. Grant’s Blog.

While these books help to increase awareness on this invisible tragedy, my new children’s book Daddy’s Different, will help put into words the struggles young children face when living with a TBI parent. Told through a simple story and beautiful images, Daddy’s Different relates to the smallest victims of the brain injury aftermath; the children.

Here’s a sneak peak at the cover:

DaddyDifferentCOVER
Check back for more updates and the actual RELEASE DATE!

And as always, thanks for your support!

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Promise you won’t forget me…

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While this blog is and will remain a space for increasing brain injury awareness, it is also one of the few places where I allow the words of my heart to seep out. And right now my heart is breaking. For the past few weeks my grandfather has been dying.

My eighty nine year old grandfather…my Poppop.

We all knew this was coming. I’ve been secretly bracing myself for it for years, knowing that as I’ve grown older, so has he. But it seems there is no amount of preparation for the ugliness of death.

I foolishly thought that my experience through the brain injury had armed my heart against such grief. I thought as I had grown strong, I had built up a sort of immunity to heart ache. I was wrong.

There are many forms of heart ache. With the brain injury, swirled doubt and anger and fear. With my Poppop I only feel sadness in knowing the inevitable.

So our family has gathered around him; a life time of relationships and memories, whispering final words and forever goodbyes. We have sat with him, smiling through held hands. Sometimes talking about the small things, sometimes not saying anything at all. It was the silence where the most was said; the knowing, the sadness, the tears. The fear of a life without him and the lifetime of love that can only ever be felt, never said. It was our spirits saying goodbye.

He died this morning.

I know this is a part of life. I know this is the natural order of things. I know this is something we all must face one day. I know I will get through this.

I know!

I know!

I know!

So why can’t I stop crying?

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Accepting new Life after Death…

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It’s an odd thing to miss someone who’s standing right in front of you. But for a while, that’s what I did. Even though my husband was still physically there, ‘the man I knew, the man I loved’ was somewhere else. The brain injury had stolen him away from us, and brought back this distant, vacant person in his place.

Through his recovery, I would spend every waking second with him. We would go for walks together, eat dinner together, and try anything we could to feel like a family again, but my heart was never fooled. When I would lie down beside him at night, I would find myself missing him. I was going through the most difficult time in my life, and the person I wanted to lean on the most was gone.

My husband would come to refer to the accident as ‘the day he died.’

It wasn’t until my own grief settled in that I realized he was right, in a way. Brain injury is a sort of death. All the stages of grief are there: denial, anger, sadness, regret, and acceptance. And I felt them all, only I felt them beside the very person I was grieving for. He felt them too.

But there is a misconception with grief that you drift through one stage into another until you are finally free of it all. The truth is, you never really graduate from grief. The emotions of it can find you years later, when you thought you left them far behind.

Like most, I struggled with acceptance; not only the acceptance of the death, but the acceptance of this new life. I struggled to accept this new person who looked like my husband, but wasn’t my husband. He was different, distant, changed. It was as if I was widowed and remarried all in the same day. How could I trust this stranger?

How could I love this stranger?

So much of a marriage relies on the familiarity of the other person. Knowing their likes and dislikes, their responses to any given situation, their quirks that only you know; there’s a comfort in the predictability of the relationship that makes you feel at ease and safe. All of that was wiped away after the brain injury. My husband’s sense of humor had changed, his tolerance for the world had changed, and his temper had changed. There was no more predictability.

I felt a wave of regret. All those years of marriage, and I didn’t appreciate what I had. All that time wasted bickering and complaining over trivial things, and not embracing everything about him. Not realizing how soon it was going to go away.

I started to cling to his memory until every little thing I could remember about him was suddenly dipped in gold. I didn’t remember our struggles or our differences; I didn’t remember his faults or annoyances.

I put the past on a pedestal.

It took me a while to realize that this perfect past was keeping me from accepting the changed man standing before me. I was comparing the new him to the best part of his former self, and he was always coming up short. I felt I couldn’t love this new person, and I was scared that if I ever did, if I ever accepted who he was now, then I would be letting go of who he was then.

It turned out, that’s exactly what I needed to do. I needed to come face to face with the past. I needed to remember the authentic him in his entirety. I needed to let him go.

So I wrote him a letter. A letter he would never read for he was already gone, but that seemed to pour from me once I let it out. I filled it with everything I needed to say to him; my thoughts, my struggles, my grief. I said goodbye. I’d like to say that at the end of that letter, I was ready to move forward and ready to accept this new husband, but that didn’t happen. It was however, the start to the process of letting go of our past, and letting go of him.

Today, I barely remember the man I had to let go of. I have lived alongside my husband post injury for so long now, that man has faded from my mind. Sometimes I still read the letter though, reflecting on that time in my life. I don’t recognize the author anymore. She’s gone too.

“The life of the dead is placed in the memory of the living.”
Marcus Tullius Cicero.

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Back to normal…

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With most tragedies, so much of the devastation is found in the days and years after the initial event. Long after the visitors go home and the get well flowers die, the real recovery begins.

For so long, it seemed we lived and breathed brain injury. Our entire lives became devoted to my husband’s recovery. Even though the rest of the world had moved on, we were still struggling to find our baseline…to find our “normal.”

The first year was devoted to his cognitive abilities and getting him back to a “functioning” level. Whatever that means. So while other families were dividing their time between dance recitals and basketball practice, our family was shuttling from one therapy to another, hoping to one day get back to normal.

There was speech therapy where flash cards were held up with pictures of everyday objects and my husband’s job was to simply name the object. I remember he always got stuck on the one with the picture of a strange contraption with two wheels, a seat and peddles.
It was a bicycle.

There was occupational therapy where he was asked to get dressed on his own (which took him a while), count money (which he couldn’t do) and read early reader books (which he could do). There was physical therapy where he was asked to toss a balloon in the air back and forth with a stroke patient to test his reaction time. It was better than the stroke patient’s.
We also had to divide our time between vision therapy (because surprise, surprise, the eyes are connected to the brain), and psychiatric therapy where they were waiting for the depression to hit. But that’s an entirely different post.

Through this all, it was my sons who suffered most. Their lives had been turned upside down, their routine shattered. There was no more family dinners or camping in the woods. No more books before bed or just a lazy day around the house. There was no more normal.

The guilt of this hit me when my oldest son, K, was staying the night at my moms. He had spent a lot of time with my mom since the accident. I just didn’t have it in me to balance both caregiver for my husband and attentive mother to my boys. But K had had enough of Nana. He started to cry and demand to go home. He wanted his own bed, his own house, his own normal. It occurred to me then, that in my quest to “fix” my husband, my son had lost both parents.

I realized I couldn’t keep the injury from K anymore. We had a marathon of recovery ahead of us and we needed to do it as a family. So I decided to get K involved. At that time, he was just learning how to read. So I had him read to Dadda. They both took in the visual words and helped to strengthen their comprehension skills. We played a game called BLINK that focused on multitasking in the brain. You must match numbers to numbers, colors to colors and shapes to shapes. My husband and son were on the same multitasking level at that time. We started a gratitude journal, where each night we would sit down as a family and name the best thing that happened in our day. My husband would then write it all down in the journal and my son would draw a picture of the events. This helped to strengthen my husband’s memory by recalling the day.

Doctors have said that the most significant recovery from brain injury happens within the first year. I don’t agree with this. Each year my husband has recovered, but in completely different areas. The first may have been devoted to making him “functioning,” but the other years were devoted to his emotional, spiritual, and societal recovery.

Brian injury is a life sentence and recovery never really stops. There has never been a day when my husband woke up and said “I’m cured!” And honestly, the most significant strides in his “Self” recovery have been in the past year or so.

We never did find our normal, not like it was anyway. But we found a new normal. A normal that told us everything changes and not all changes are bad. Where brain injury is concerned, change is a sign of growth. Change is normal.

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Wishing for a SCAR?

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One of the most challenging things about a brain injury is that it seems impossible to describe to an outsider. Before my husband’s injury, I myself was an outsider. I knew very little about the brain or how important it was to our quality of life. How so many of us take our own brains for granted. But now I am forever in this exclusive club where only the secret members understand the rules.

The first rule of brain injury is…you can’t describe the brain injury.

The second rule of brain injury is…you CAN’T describe the brain injury!

The third rule of brain injury is…you get the idea.

Brain injuries are unique in the way that they affect the essence of a person. Instead of crippling ones movements or mobility like most “injuries”, a brain injury cripples ones emotions and personality. It cripples the very core of who they are…or were.

And these crippling differences aren’t obvious to the outside world. Any evidence of a brain injury occurs within the brain itself: memory loss, confusion, fatigue, impaired cognitive ability, frustration, anger, the list goes on. There is no cast or scar, no wheelchair or missing limb. A brain injury is invisible.

When my husband was staying in the hospital, I didn’t let my oldest son, K, go and see him. I didn’t want him to see his “Dadda” like that; so vulnerable and weak. I was trying to preserve the hero like persona that my son had about his father. No boy should see Superman’s red cape lying defeated on the floor. But after two and half weeks, when my husband finally came home, I saw confusion in K’s eyes. Where was the “owie?” K had been kept from his father for so long because Dadda had an accident. He’d been told by me that ‘Dadda had a big owie.’ Yet the man standing before him had no owie. To K, Dadda looked the same.

And that will always be the struggle brain injuries and their captives face; describing this invisible pain, this invisible change to the outside world.

I found myself wishing for a scar; some sort of reminder that all is not well, better, or over. If he were in a wheelchair, his limits would be noted. It would be easy for K to understand why Dadda couldn’t help out on his soccer team. In a wheelchair, the injury would be forever visible. The obstacle then would be proving to the world he could still contribute despite his injury, instead of trying to remind the world that he still had an injury.

Instead, the truth was that Dadda couldn’t help on K’s soccer team because the constant noise and commotion from so many kids overwhelmed his brain to the point of panic and sometimes rage. Tell me how a five year old is supposed to understand that? Or even remember that for the next practice. Sometimes even I forget to remember.

But I suppose that is the burden all emotional scars bear. They bind us, contribute to who we are and yet the world doesn’t see them. There is no visible scar for a Broken Heart asking the world to handle us with care. There is no noticeable mark of a Grieving Soul begging life to give them a break. And there is no clear wound of a Damaged Brain reminding the world to be patient.

Even now, so many years later, I still have to remind K of what happened. When Dadda’s tired, or forgetful or emotionally aggressive, I must remind my son that his Dad still struggles from that accident so long ago. I have my doubts as to the depths of my son’s understanding of brain injury; after all, most adults I come across can barely comprehend it.

But if I have learned anything from this life altering journey, it’s that everyone has a story, and it’s usually paved with emotional scars. If you look at anyone hard enough, you can see them…even a brain injury.

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Hope for the Hopeless

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I remember in the beginning of my husband’s recovery, the doctors and nurses were very bleak in their prognosis. They were cautious to give us any sort of Hope, or “False Hope” as they had stated. “He may never recover,” they said. “You need to start accepting the way things are now,” they said.

It was as if they had moved our entire world under water and expected us to just know how to live there, how to breathe there.

Maybe in their field they had seen too much. Maybe they didn’t see a lot of success stories where brain injury was concerned. Maybe, they themselves had lost Hope.

But I couldn’t lose Hope. I needed it. It was all I had. A brain injury is so unique, so individual; there is no direct path to recovery. There is no set of guidelines you can follow that will offer guaranteed results. So I clung to Hope like a drug, even if it was “False Hope.”

And through this, I learned a very important life secret. There is no such thing as “False Hope.” Hope is Hope, whether it’s real or not. When staring into the unknown, what else do we have but Hope? It’s the only thing telling us “it’s going to be okay.” If strength is the courage to take another step, then Hope is our light through the dark. And brain injury is a dark, dark place.

In the days and weeks after the accident, the best part of my day was always in the morning; and it was immediately followed by the worst part of my day. It was in the two seconds right after I woke up that I would find my best part. For in those two, blissful seconds my mind had forgotten about what happened. Forgotten it was real, forgotten my husband wasn’t lying next to me in bed; forgotten the pain. After those two seconds though, the weight of reality would settle in and I would remember.

It was then that I cried the most. It was then that Hopelessness would creep its way in. But eventually, my Hope would return and my tears would stop.

I had to have Hope that this day would be better than the day before. I had Hope that my husband would wake up and recognize the severity of what happened because we needed him to. I had Hope that if I surrounded him with enough pictures of our life together, he would come back to us. I had Hope that we would be whole again. Even though it was dangerous to have such “High Hopes,” it kept me sane and strong enough to stay positive for my sons.

Looking back, I think I was crazy for having so much ‘Blind Hope’ where brain injury was concerned. I didn’t know it then, but we had such a long road ahead of us. It’s not to say Hopelessness doesn’t still find me, but my time with it grows further and further apart. The brain injury is and will always be a very present part of our lives, but I still have Hope…

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Stronger are the Broken…

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Hemingway once said, “We are stronger in the places we’ve been broken.” I have found this to be true.

As I sat in the dark hospital room watching my newly awoken husband stare at the wall, my mother-in-law turned to me. It had been four days since the accident. Four days since he’d smiled, eaten or even said a word. Four days since everything changed.
We were sitting in our fixed seats on the bench of the room, both waiting. For what, I don’t know. Improvement, change, anything that suggested he was still there, still him. The blinds were pulled shut and the lights were off because early on, the brightness of the world hurt his head and eyes, like he was constantly struggling to wake up.

She said, “You will come out of this stronger. You will be an Amazon woman when this whole thing is through.”

I didn’t believe her. I didn’t want to be stronger. I didn’t want any of it. I would have sacrificed a lifetime of strength for the chance to rewind, to go back to before. But that’s the funny thing about strength. It’s not really a choice. You don’t decide to be strong, you just are. You get through it whether you want to or not. And in my case, I had two very real reasons to get through it, to be strong; my boys. Then, five years old and five months old, they needed me. My husband was in limbo, and there was no guarantee he would ever come back.

It’s been 4 ½ years since that day. And now I can say that like Hemingway, my mother-in-law was right. I am stronger. But here’s the thing we didn’t expect:

my husband’s stronger too.

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