Friday, May 13, 2011

What I Learned on My Vacation

It's been 17 months since my traumatic brain injury, and if there's been one constant in my life during that time it's been doctors. Each week, I see multiple doctors and therapists several times a week. Some weeks, I have two or more appointments in one day. Other weeks I have an appointment each day of the week. Sometimes it's both.

I've come to know my doctors, therapists and the medical staff in their offices very well, and have formed very good relationships with almost all of those I see regularly. They have become very much a part of my life and, without question, an integral part of my ongoing recovery process.

But - and there's always a BUT - seeing doctors on such a regular basis can also begin to wear on the mind, body and spirit. Even though I know I need them, it often feels like my life is consumed by medical appointments, insurance costs, confusing explanations of benefits, and the overwhelming sense that this is not what life should be all about.

A little over four weeks ago, as I was preparing to leave for a three-week vacation in Europe to visit with family and friends, I was in a very bad place emotionally. I felt overwhelmed with my conditions caused by the TBI and consumed with fear about the financial pressure all my treatments have put on us. 

I had been on vacations before since my TBI, but this one was going to be an especially long one, and I was scared of many things. Would I feel miserable and ruin the trip? Would I run out of medications? Would I trip and fall in a foreign country? What would I do without my doctors, therapists and TBI friends and support groups?

Now that I've been home a week and have had time to reflect, I realize what a blessing the vacation was and how much it did to increase my confidence and sense of independence and liberation. It's not that I didn't have rough times, but I realized that I had the tools to deal with them, as well as the patience and support of my husband, family and friends.

Surprisingly, I took far less of the pain and anxiety medications than I thought I would need. My balance and coordination at good times was decent even on the roughest old cobblestone streets. At bad times, I managed by pacing myself and holding on to David. Even in big crowds I could tell that my anxiety levels were lower than they had been in the past. At times, I was enjoying myself so much I didn't even register anxiety or panic.

Most significantly, perhaps, was the realization a few days after we got back that I had managed just fine for three weeks without doctors and had more than taken for granted how wonderful it was to be free of any medical appointments! Granted, by the time I went to the neurologist, I was more than ready for my monthly nerve block injections for my pain, but even then I discovered that I needed fewer than in the past.

As my neurologist said when he demonstrated why I no longer need the nerve block injections in my forehead, but now only my neck, shoulders and back: "You've graduated to the next level."

Yes! I've graduated in many ways, I guess. And my vacation was a turning point for me. It helped me take a step back and see the transition more clearly and with a fresh perspective. I'm far from "cured," but I am improving, and that is a tremendous blessing made even more so by the recognition of it.

While I was away, I also saw one of my ambitions come to fruition: to publish a book. For years I have been writing historical non-fiction articles for magazines, web sites and blogs. Now I have a book! "An Unusual Journey Through Royal History" is the first of what I hope will be many books that I publish. Lord knows I'm not going to let my TBI get in the way of my hopes and dreams, not while I have an ounce of strength left in me!

To me, all of this says so much for what we as TBI survivors can achieve. I know so many TBI survivors who are doing wonderful things with their lives. Whether it's publishing a book, hosting a radio program, serving as an advocate, running across country, moderating an online support group, being a great parent... I could go on and on. 

Sure, doctors have a lot to do with our recoveries, but doctors can't heal us without our cooperation or make us determined to move forward with our lives. They are like parents who do the best they can when we're in their care and leave the rest to us. 

The bottom line is that those of us who have survived TBIs are survivors in endless ways. We are people who don't give up, and our immense challenges make us stronger, more resilient people. We just need to take a step back sometimes to recognize how far we've come in our individual journeys and see how much we've achieved.

Tuesday, April 19, 2011

Brain Injuries Don't Take Vacations

A traumatic brain injury is a confusing affliction. At least for me. There are times I seem to do very well. My confidence swells. I think I've gotten over the biggest hill and then, WHAM... I feel terrible again. 

By terrible, I don't necessarily mean the pain because that I deal with to some degree every moment of every day. What I really mean is my emotional state-of-mind and overall sense of physical well-being. When one of these three elements happens at a time, I can usually manage okay. But when all three hit me, I'm literally down for the count.

The worst part is how hard I am on myself at these times. I expect more and better from myself and don't like it when I'm unable to do reach those standards. 

Right now, I'm on vacation, and after three full days of sightseeing by foot, I suddenly switched into what I've referred to before as my zombie mode. Everyone else saw it, but I kept trying to deny I was anything more than "just tired." In reality, I knew I was critically exhausted and unwell, but I was more concerned with not letting others down by saying I had to go back to the hotel.

Instead, they told ME I needed to go rest and that I wasn't to worry about them. They were all adults and could do quite well without me, they lovingly informed me, as they sent me off with kisses and hugs. 

So what on Earth is wrong with me? Why am I more concerned about everything except my own well-being? And when I'm taking care of myself, why do I feel guilty? 

Why, for instance, do I feel guilty that this is the first blog I've written on vacation? It's not that I think people can't live without reading my blog (I'm not THAT narcissistic!). And it's certainly okay for me to take a vacation from my blog on my actual vacation, but here I am, writing a blog.

I do know this: ever since I started writing this blog and started meeting others with brain injuries, I've felt very connected to so many wonderful people. They are always there for me, and I for them. But when I'm feeling my worst and disappear into solitude for a while or even go on vacation, I feel the loss of those connections very deeply. And I feel my ability to help others is gone and I'm a failure to help those I care for.

Our problems are always with us. They don't take vacations. But sometime our problems force us to take breaks, during which, our ability to help others is limited while we nurture ourselves. As for vacations, well, I should be enjoying myself as much as I can, but I also want to keep that vital connection open, especially when I'm feeling a little rough. 

So I blog - from my vacation - to tell all my brain injury friends, I haven't forgotten you! You're here with me, supporting me and, hopefully, knowing I'm supporting you, too.

Sunday, April 3, 2011

Dark Places

As a child, I had terrible, vivid nightmares that would jolt me awake in sobs or screams.

My mother would come into my bedroom and ask me what I was dreaming about, but I didn't understand and couldn't explain them. I would ask her to stay with me, and she would sit or sleep in a chair near my bed.

I didn't need a light; just knowing she was there with me in the darkness was a comfort, and I would eventually fall back to sleep and escape the nightmares.

Now, the nightmare I can't understand or explain is my traumatic brain injury and the way it makes me feel - physically, emotionally and mentally. At times, all three elements collide and send me into dark places within myself, and I'm usually unwilling to invite anyone inside. Instead, I close the shutters and hunker down until the storm has passed.

Since my TBI, I've been through this many times. In the past, it has usually come and gone without much effect on life outside my safe little bubble of my husband, family, close friends and medical professionals. But that all changed when I started writing this blog and began meeting others with brain injuries.

As I opened myself up through this blog, I connected with so many people with struggles similar to my own. They inspired me and helped me realize I wasn't alone. Many have become close friends who I can help and who help me as we battle the turmoil of our brain injuries and their consequences.

The feelings of connection and understanding I have with these wonderful people and that I get through writing this blog are profound. They're also frightening and overwhelming at times. I find myself getting lost in the feelings I have about the struggles we all go through - our pains, frustrations, fears and helplessness - and how little help and understanding we often get outside of our own group.

Throughout March, as my hopes for raising awareness and understanding of brain injuries during National Brain Injury Awareness Month crumbled and came to nothing, I descended into a very dark place. Filled with conflicting emotions at one moment and entirely devoid of feeling at another, I pulled away from my TBI friends and my blog. I raged and cried. I curled up in a ball and wished to evaporate into thin air. I rallied here and there, making a few steps forward, only to fall back again.

By the day of my birthday on March 30, I was inconsolable, despite an abundance of love, good wishes and some very positive news. I couldn't understand my hopelessness when there was hope, or my lack of happiness in the face of so much good. I just felt like I had let people down because I had fallen apart when I wanted to be strong, and I couldn't do and achieve all the things I had hoped to achieve.

I felt guilty and like a failure, and at times I just wanted to divest myself of my identity as a TBI survivor altogether because I felt I couldn't even get that right. I hoped in vain that this was all just one of my horrible, vivid nightmares coming back from childhood to haunt me, and I would wake up with a sob or a scream. David would be there to tell me it was just a dream and hold me until I fell back to sleep. Instead, I would wake up each morning to find myself in the same dark place.

Until now, I found it impossible to say all of this to almost anyone. As a writer, I sometimes find it easier to bare my soul this way than by talking. Writing is also very cathartic for me, and one of the easiest ways to work through what I'm feeling. This time, however, it wasn't writing that brought me to my senses.

Instead, it was the thought of my childhood nightmares and the memory of my mother's presence in that chair in the darkness that helped me recognize that I've had the same loving comfort surrounding me all the time I've been in this present dark place.

Everyday, I get e-mail and phone messages of love and support from my TBI family. They tell me they appreciate all that I do for our cause and remind me that they are there for me like I've been for them. The same people I've been feeling like I've failed believe in me and support me, no matter what I think or feel about myself.

In addition, the people that are physically close to me don't think I'm a failure just because I'm in a dark place. They also believe in me and support me no matter how low I feel.

As much as I've tried to squeeze almost everyone out of my dark place, they've been there with me providing comfort I was unable to see... until now.

I have no doubt that I will still find myself in dark places; but I hope in the future I won't forget that I am never really alone in the darkness.

Tuesday, March 22, 2011

My Two Birthdays

When I started writing this blog last December, just before the one year anniversary of my traumatic brain injury, I knew no other TBI survivors. That all changed with my first blog post when I suddenly connected to hundreds of people like myself.

Since then, the world has opened up to me with a wonderful group of people who support and love me, even though they've never met me.

Through them, I've learned that I have two birthdays. The day I was born, and the day I survived my TBI. As my actual birthday nears, I can't help but think more about my TBI birthday - December 23, 2009 - and how important that day is to remember.

I didn't recognize my first TBI birthday, partly because it was too upsetting and partly because I didn't have the perspective on it my new friends have given me. But now that I approach my 37th birthday on March 30th, I realize that I might not be here today had I not survived my TBI on that day in December when I was still just 35.

One of the few memories I have immediately following my fall was when the paramedics were in our home. I'm told there were seven or eight of them. I don't remember their faces from that day, but I did hear some of their voices. One was asking me questions. Another, somewhere else in the room, was talking to someone on a walkie-talkie, and I remember hearing him say something like "35-year-old female... head trauma..."

Hearing those words scared me and I suddenly thought I was going to die. I kept thinking of Natasha Richardson. I remember saying to the paramedic tending to me, "I'm only 35. I don't want to die like Natasha Richardson."

Those of you who read my blog regularly or talk to me have heard me relate this story before, but it's a significant memory to me, as I was suddenly faced with my own mortality at a young age. I really didn't want to die.

Sadly, there were times not long after my TBI that I DID want to die because the pain was so intense and I felt so miserable, emotionally, mentally and physically. But with the passage of time, I cherish my life - even on the really bad days - and am so grateful to be here to celebrate another year of life.

My TBI has changed my life - in both good and bad ways. There's no doubt about that. It's so hard to say this without sounding cliché, but I think the struggles have made me appreciate what I do have, and I believe I have more meaningful purpose and direction in life now than before my TBI.

None of us ever knows when it's our time to go, but I do know that December 23, 2009 was not my time. So on March 30th, I'll be celebrating both my birthdays - my first and my second.

If you'd like to help me celebrate, please consider a donation to the Brain Injury Association of America in honor of both my birthdays. Thank you!

Thursday, March 17, 2011

OpEd: Brain injuries need - but don't get - the same level of awareness as other diseases

Since no newspaper would publish my OpEd for National Brain Injury Awareness Month, I figured I'd just have to do it myself, so here it is! -Tori

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March is Brain Injury Awareness Month.

I wonder how many people are aware of that?

Or how many know that an estimated 1.7 million Americans sustain traumatic brain injuries (TBIs) every year (according to the CDC)?

In contrast, just over 200,000 women were diagnosed with breast cancer in 2007 (CDC).

Yet while most people recognize Breast Cancer Awareness Month, Brain Injury Awareness Month goes virtually unnoticed.

This is not to minimize breast cancer. I applaud the organizations that have raised awareness for causes like breast cancer. They’ve saved many lives.

But the statistics are clear: more people die of brain injuries each year (approximately 52,000) than from breast cancer (40,598 in 2007), fatal motor vehicle crashes (30,797 in 2009), and homicide (18,361 in 2007), according to the CDC.                                                                      

Overall, the CDC states: "TBI is a contributing factor to a third (30.5%) of all injury-related deaths in the United States."

Despite these statistics, traumatic brain injuries are not on the priority list of causes, even with such high-profile cases as Arizona Rep. Gabrielle Giffords.

What you'll rarely hear about are the millions of other TBI victims and survivors who go virtually unnoticed.

These are average, everyday people who may appear normal and functional on the outside while havoc is being wreaked in their brains, bodies and lives.

It's not uncommon to find TBI survivors whose marriages have been ruined, children have been taken from them, friends have dismissed them, or have even been shunned by their families.

Many can't work or go to school. They may have debilitating pain, anxiety and depression that prevent them from leading fully-functioning lives. Some spend much of their time in doctors' offices, undergoing various therapies and painful treatments, and spending thousands of dollars in the process.

Still others go untreated or under-treated because they are misdiagnosed or can’t afford proper medical care.

I know all of this because I am a traumatic brain injury survivor.

Two days before Christmas 2009, I slipped on the wet kitchen floor in our home, sustaining a severe concussion, an occipital skull fracture, a subdural hematoma and, among other things, severing my olfactory nerve.

Since then, I’ve been on a long and painful road of recovery. But, in many ways, I’m one of the “lucky” TBI survivors.

I’m receiving excellent care by a great team of medical professionals. I have a loving husband, a supportive family and caring friends. And despite the financial burden of my medical expenses and living on one income much of the time, we've managed to keep our heads just above water.

Not everyone with a TBI is this fortunate.

Before my own brain injury, I was one of the millions unaware of the seriousness and extent of brain injuries in the U.S. or about their immediate and long term impact on the body, mind and soul.

Now that I know first-hand what it’s like, the most important things I can do are share my story as a TBI survivor and be an advocate for the cause.

My goal is to see brain injuries receive the same level of awareness given to causes like breast cancer.

Not all brain injury survivors are politicians, sport's heroes or celebrities. We are your friends, neighbors and extended family members. You might even be one of the 1.7 million Americans who either have or will sustain a traumatic brain injury each year.

And we want you to be aware of traumatic brain injury because awareness is the first step toward dedicating the research and resources that eventually lead to real help for traumatic brain injury victims and their families.