Down the Rabbit Hole, How We Live With Traumatic Brain Injury

Don and Terry on their adventure the day before the accident

I want to use this part of my writing to talk about TBI and how it affected our lives and always will. Traumatic Brain Injury is a lot more common than I once knew, and there is very little support for the families and caregivers out there in the ‘real world’. TBI-affected people often look really normal and the leftovers from their injuries can be mild to profound, you cannot read the book by the cover in the case of TBI in many cases.  We are the lucky ones, Terry came back, and he is about 90% of the Terry he was before he crashed his motorcycle into a deer while he was doing 70 MPH at night in Montana a few years back. I tell people who ask that it feels like I am married to his twin, he is not the man I married, he’s just a little different from that guy, but we are doing well and happy to be here.

The focus on Gabrielle Giffords brain injury brought memories rushing back this week. I am so glad I kept a journal and sent detailed emails and even took photographs. When the President said, “She opened her eyes”, I could relate on a personal level. Here is the letter I emailed home on September 18, 2006 from the ICU in Billings, Montana, Terry crashed on the 13th and he was in a coma for several days before he opened his eyes.

September 18, 2006

Hello to all:
First let me thank all of you so very much for your love, energy and prayers. I do believe there are some miracles at work here–today he opened his eyes and kept them open for a minute or two at a time. He is tracking and that’s hard for him because his doctor said with the fractured eye socket he’s probably seeing double. He looked at me and knew who I was. He was able to respond by squeezing my hand–and when I was talking with his nurse and laughing about covering my gray hair after this week and his nurse said to him, “Terry, I’ll bet you don’t care if she has gray hair.” He shook his head no distinctly, we both saw it, small gains but exciting still.

 He is still intubated and we hope the tube comes out tomorrow. It all depends on his level of cognizance. This matters a lot in this case because his right lung is still fairly full of fluid that he will have to be able to cough up by himself. It is amazing how much you learn that you never wanted to know going through this experience. He is bruised from one end to the other and his right hand is broken and very swollen. He has the remnants of a shiner and various cuts and nicks all over him, and he’ll have a good sized scar on one cheek where he apparently landed on the pavement. He still has an epidural in his back to help with the rib pain and pain from lying on his back for so long. You can tell he’s pretty darned tired of it, his legs are restless and kicking constantly–he still loves having is feet rubbed and that calms him down for a few minutes. He’s not cognizant enough to remove the restraints from his wrists yet–he tries to pull the tube out when he gets a chance and I’m so hoping it gets taken out so he can put on some Chapstick–among other things, like breathing on his own.

The valve has been removed from his head and his pressures remain very good–as do his head CTs. He does have a rather unfortunate mullet though, because his hair was shaved to just above his ears, and he has a whole lot of big black stitches. I’m thinking Dr Frankenstein was in on the surgery( I guess I’m so happy with the gains he’s made that my sense of humor has returned with a vengeance).

How any single person will do emerging from a head injury is hard to predict because the brain is such unmapped territory. Each and every person is different in their injury and response. I have learned to live in the now and be grateful for every small gain. The doctors have done what they can for his head injury–the rest is up to God and the angels and so far they’ve done a damned fine job. We don’t know the extent of his brain trauma yet, and we won’t until assessment can take place in a week or so. I’m not even speculating, just living in the here and now, happy I can hold his hand and have him squeeze mine back.

Please don’t send flowers—he can’t have them in the ICU anyway. I have been thinking when we get through this I want something positive to come out of it. I have Terry’s leathers and his helmet and they tell a story that I really want to spread around–riding safely and wearing a helmet. Terry was doing all that and still had an accident that was not his fault while he was doing 70 mph. If there was no helmet there would be no Terry. That makes my blood run cold because Montana is a helmet optional state. So instead of flowers let’s put our thoughts and energy into something that could save another life. I wanted to tell you all how overwhelmed I am by the outpouring of love and care. There are prayers in New Jersey, prayers in monasteries, prayers in the LDS temple in Oakland, prayers in Washington D.C., and prayers in Georgia and Chicago and Southern California. Terry has received prayers and good energy from every sort of denomination and religion from Buddhists and Wiccans to Catholics, Seventh Day Adventists, Latter Day Saints, firemen and Harley Hog chapters–even from the barista at Starbuck’s who knows him as the Soy grande latte guy! Thank you for all of them and keep them coming–we aren’t there yet.

Terry always looked sad before he went to TBI rehab. He was a different person then

Christmas 2010. Terry is back and we celebrate every day like it was Christmas!

That was in 2006. Here we are in 2010 and its been a bumpy road but we made it. I want to post more of the memories, the coping, the stories, how it was. My hope is that anyone out there dealing with TBI will find some help in even seeing the footsteps of someone else who tracked through that wilderness. Nothing ever stays the same, that’s the good news and the bad news I think.

Our prayers go to Gaby Giffords and her family on their long road home.  Please, if you ride a motorcycle, a bicycle, ski or snowboard or skateboard, think about wearing a helmet. If you are impaired that’s one thing, but what about the damage to your family and loved ones for the rest of their lives? How about the cost in medical bills, time off work, the years your children lose with head injury? The people I saw struggling at the Centre for Neuroskills in Bakersfield are a story for another day, for today we have hope.

The Angel of Montana, shot the week after Terry's accident

4 thoughts on “Down the Rabbit Hole, How We Live With Traumatic Brain Injury

  1. Linda Carter

    Roxy, I love the way you write so strait forward and truly descriptive. Although the injury for Art’s brain was caused by stroke, the effects are much the same. The rehab is not something that has an end. Every day is different in what I call “micro milieu”.
    The days of initial rehab seem almost in a fog to me. I kept no journal like you did. I can’t help but reflect on the coincidence of timing for Art and Terry. I am so very grateful for survival and recovery. Thank you for your blog. Linda

  2. Hed

    Thank you for sharing this. I didn’t connect the Congresswoman to Terry, and now I understand how you would be identifying with it.

    PS I love the new website!



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