I watched her sleep today. Always the first one up in the morning, my brain often waking up an hour or more before I do, today I had the luxury of not jumping tight out of bed.
And she was smiling in her sleep.
And I was glad… glad that she was able to find a measure of peace away from the daily challenges of life.
We’ve all heard that old saying about a picture being worth a thousand words. But looks can indeed be quite deceiving. A face smiling back at you as you look at a picture tells you so little. Rather than a using picture to tell the tale, today I opt for the Thousand Words.
A little over four years ago, on a day too much like today, the old David died. Thrust through time and space in an obscene montage of glass, metal and bike parts, I soared through the air and into the new and often unfathomable world of traumatic brain injury. I was struck down by a teenage driver while I was cycling.
I feel the need, at some level beyond my ability to describe, to chronicle my journey. Like an unscratched itch, if too many days go by without pen to virtual paper, I just get nudgy.
Why write? The reasons are myriad. I write to create a tangible record of my journey, one that I hope to look back on with delight as I see forward progress. As many of my new friends are in the same TBI club I am in, I open my heart and soul in an effort to let others know that they are not alone… that others share in their challenges and truly understand.
And I write so that I can try to better understand my own new life, to capture a perspective I can gain no other way. My goal today is to offer a bit of a snapshot as to what my day-to-day life is like as I start year three of life since my accident.
A brain injury is like a shadow on a sunny summer day. It follows you everywhere you go. No matter how fast you run, no matter how high you jump, there is no escaping your shadow. My TBI dogs me much the same way. It’s always there. Sure, there are moments that I don’t think about it. Like that summer shadow, you know it’s there. Just look down and you’ll always see it. But it never goes away.
Ask most anyone with a TBI what words are the most likely to raise the hair on the back of their neck and they will more often than not say something like, “but you look normal.” Brain injury is often called a hidden disability. Most who may see a picture of me and Sarah would be inclined to think we look like a couple of fun people out living life. To a large extent, that’s true, but there is so much more.
These days, my challenges, while very familiar, still abound. Of the day-to-day challenges that have become part of the ebb and flow of life, it is the Post Traumatic Stress Disorder that continues to be the most challenging. A couple of nights a month, I wake up either screaming, shaking, or with a face covered in tears, my body wracked with uncontrolled sobs. This past week alone, my mind after dark has seen me in the company of one of my closest friends as he prepared for his own suicide. He lost his wife, his soul mate, his best friend five years ago. I was close to him while she faded away to cancer, and have been a steadfast friend since she passed into the Realm Beyond. In yet another PTSD night terror, he let me know if was time to join her. The pure vividness of my PTSD nightmares simply cannot be described. He looked into my eyes and said goodbye, thanked me for being there for him, for being a true friend. I watched the tears stream down his face as he knew he was both saying goodbye and getting ready to see his beloved wife again. I wept with him.
And I awoke in the instant before he died.
If there is any silver lining to this one, it was that I woke up without waking up Sarah. A while back she said that life today was like life with a newborn in the house. How well I remember those days, walking around mind numb from 2:00 AM feedings. Doing your best with a head clouded with a sleep-debt induced fog, to focus on the awake part of your life, only to know that there was another night coming with questionable, if any, sleep. Such has been the nature of our lives for over two years. And it tears at my heartstrings, knowing that my issues effect Sarah. Don’t let anyone kid you. Brain injury effects virtually everyone involved. Wives, husbands, mothers, fathers, children, the list goes on. All are impacted by a TBI.
Always one to live in the solution, I have tried everything the “professionals” have suggested and more. A year of therapy did not eliminate the PTSD nightmares. A well-intentioned doctor offered prescription medication that almost took my life in the form of my own suicide, so medication is off the list. When the neuro-psychologist said no caffeine after 2:00 PM, I was obedient almost to a fault. We can add to this list little or no technology at night. How about chamomile tea as was suggested? I still drink chamomile tea every night… and we’ve seen how well that works. As only the desperate can relate with, I did have a healing session with a Native American healer at a Pow Wow a couple of summers ago. And for two blessed weeks, I slept. Week three brought about the same-old-same old. A dream catcher now hangs over my bed. Last night was the second night in a row of blessed sleep. And it’s bittersweet. I cherish the sleep but know that every night of no nightmares means I am closer to my next bad night. Those who know me know that I am positive by nature, so this is more of simple stating a truism, than anything. It is what it is.
Other challenges abound. I can no longer tolerate crowds for any length of time, and situations that are unfamiliar can fill me with an anxiety heretofore unknown to me. The list goes on… from unending tinnitus to my inability to perceive the passage of time, life is often surreal, often hard and often painful. Last year, Sarah gave me a watch with a very clear month, day, and time presentation on the watch face. Even still, I look many times daily at my watch to see whether it’s March or November, only to forget where I am in the timeline of life and look again… and again. Lost is most of my ability to remember where I stand in the realm of time. It’s one of those odd quirks of a head trauma that is difficult to even begin to explain. If you see me somewhere, and I do nothing more than smile and say hello, perhaps banter about the weather a bit, you would never know what life is like behind the smile. But I do. It’s one of those frustrations I try not to even think about, as nothing can be done about it.
But all is not a veil of tears.
Though all of this, I have been introduced to some of the most inspirational people I have ever met – people whose lot in life make mine look like a cake-walk. Other TBI survivors are on the short list of some of my closest friends. I have met caring professionals who are truly compassionate in their care. I’ve had complete strangers reach out to me with kindness after reading my book. The list goes on.
And I have changed. It’s hard to wrap words around some of the changes, but I’ll do my best.
Philosophical feels like the best word today. More than before my injury, I am inclined to look at the extremes. The Bigger Picture is now clearer to me. At times, I can rise above the din of daily life, look around and “see” with my soul’s eyes in a way I never knew possible. And the smaller things in life have taken on new meaning. I find myself wrapping my arms around Sarah several times a day. Not needing any type of reassurance, I find simple pleasure in just holding her. A sunset can now stop me dead in my tracks. My near-death has slowed my pace, and often that is good thing.
My life is changing. My internal compass has spun around a few times and is beginning to point in a new direction. And I am setting new goals; some very personal to me, and others in the realm of where I want to go in the next chapter of my life.
Time has already shown that my experience as a TBI survivor makes me uniquely qualified to help other TBI survivors. I “get it” from an insider’s perspective and have had real-world experience in rebuilding a post-TBI life. While it makes me feel naked by putting so much of myself out there, it helps other souls. I feel a deep sense of moral responsibility to use the voice that I have. In serving others, I have found a peace that defies description. And for that, I am profoundly grateful.