It was suggested to me more than once over the past two years that I should write a book, but I’ve decided to use my blog instead because it’s much less of an undertaking. I’ve always been a very private person and it isn’t easy to share personal things, but if even one person finds this online and gets something out of it that is helpful or supportive, then that’s good. In the end, regardless of whether or not anyone else reads this, I am told that writing is therapeutic, so perhaps it will simply become my way of documenting what has been the most terrifying and painful journey of my life: my husband’s brain injury.
This isn’t going to be a story about how faith and positive thinking kept me from losing hope, or about time healing pain. There are plenty of those already written by heroic authors for people who want to read them. My story is for the other people, the ones who struggled to hold onto anything good once their lives were changed in a flash of sheer agony. It’s a real story with raw feelings and emotions, and pain that never goes away. It’s a story of lost hope, lost faith, and the lonely existence left at the end of this path of TBI – Traumatic Brain Injury. And it will show the journey through various stages of grief to a point of final acceptance. All that time does is train your brain – you learn to cope over time, you get used to what is on the other side of one wall you never thought you’d have to climb, just in time to hit another one. But time doesn’t heal wounds in your heart so big that they threaten to swallow you up like black holes if given just enough salt. And of salt, there has been plenty.
That’s not to say my suffering is greater than anyone else’s, just that we don’t all come out looking the same on the other side of a tragedy. The fact that there’s always someone worse off than you are does not invalidate your own pain and suffering. There’s no right or wrong way to get through this. The surprising thing is that we get through it at all. Some come through with stronger faith and are able to focus on what they’ve learned, and some come through hanging by a thread waiting for the moment they lose their grip altogether, perhaps bitter and resentful and wishing there was someone or something to blame. You can imagine by now which one I am – I was told by a therapist working in brain injury rehab that there’s a difference between pessimism and realism, and that because of our individual circumstances I was forced to see things realistically. Once your brain has enough negative experience data, you are trained to see things as they are, not as you wish them to be, and it’s just a pleasant surprise if you happen to be wrong. You learn to expect nothing in order to avoid being hurt, when hurt is what has come over and over again with each new possibility of hope that eventually goes up in smoke.
I would also add that those of us who feel this way often find ourselves trying to meet expectations of others to “think positively”, “look on the bright side” and “never lose hope”, and once we discover that our “realistic” view isn’t easily handled, we put up walls and learn very quickly who we can talk to and who we need to put on our happy face for, and it becomes so automatic we don’t even have to think about it. I have a public positive smiling face for when I leave the house, behind which I am silently screaming.
I am a married widow – a term used in brain injury support to help describe a surviving spouse’s torture – and there is no way to explain that to anyone who hasn’t felt it for themselves. It’s not the same thing as being an actual widow. No one is expected to understand, nor should I be expected to pretend it ever goes away.
If you’re still with me here, I will be sharing my experiences as honestly as I am able to do, based on journal notes I kept from day one, and subsequent experiences of life as we now live it. I’ve chosen not to simply edit and use my journal entries because that’s not the kind of writing I’d want to read myself, so instead I’ll just be using them as reminders of things worth sharing. I expect people to react in various ways to my words and expressions and nothing will surprise me. I guess the best case scenario would be that people who have suffered the same tragedy might find some comfort in knowing they aren’t alone, and that those who haven’t but know someone who has might gain some insight into what their friend or family member is really going through and what they possibly need in the way of support. I will write in sections as I feel strong enough, and there might be random blog posts in between but I’ll make sure you can follow this through to the present day if that’s what you wish to do.
The following is from my journal, April 16, 2013, and while it isn’t the first entry, it seems to be an appropriate place to start in sharing my story:
“That was the day my whole world went black. Air looked black. Sun looked black. I laid up in bed and stared at the black walls of my house….Took three months before I even looked out the window, see the world still there. I was surprised to see the world didn’t stop.” ~ Kathryn Stockett, The Help
I was looking online yesterday for things about brain injuries, support, tragedy, and came across the above quote. It stopped me right there because it expressed my pain, my experience of desolation. I did see the movie but I can’t place this quote in context so I’m not sure what the situation was, but it doesn’t matter; it could be anything, it could be anyone’s moment. For me, it was January 5, 2013. That was the night my whole world went black. I still don’t think I really “see” the sunshine, not like I used to. I haven’t stopped hurting since Pat’s accident over three months ago and the pain is indescribable. Sometimes it makes me feel like I am choking. I got no chance for closure, no chance to make a transition from what was our life to what we are now trying to piece back together, no warning, no “last words”. Just a regular day, and then he didn’t come home and it was over. In a flash of unbelievable agony, my whole world went black.
He was still alive, but looking back at it now, I wonder if I always knew somewhere in my mind that it wouldn’t be as simple as “no life threatening injuries,” the report I was first given when he arrived at the U of A hospital by helicopter, still unconscious. He would remain in a coma for nearly five weeks.