April 13, 2002 is permanently etched in my mind. Like a firebrand, the date has seared me with both clear and hazy memories. My Saturday morning was like any other, full of weekend chores and activity. I didn’t even kiss my husband good-bye before he left for an afternoon cycling workout. I was certain he would return in a few hours, as usual. He didn’t. Instead, a stranger called the house at three o’clock in the afternoon.
“Do you know a cyclist?”
This five-word question marked the end of my life, as I knew it.
Nothing in my past prepared me for traumatic brain injury: the initial shock, the coma, the gradual awakening, the slowness, the quirky symptoms, and the deep sense of loss. Every minute of every day revolved around treatment and recovery.
The abruptness of these monumental changes in our lives tests us as caregivers. When the person who is injured is a loving spouse, you feel lost because you would have turned to that spouse for support — you need that spouse for support. This is your soulmate, your helper, and partner. I kept looking at Hugh, who now seemed so distant, and my mind screamed: Wake up! Tell me what to do. What do you want? What should we do?
Feeling isolated and frightened, I did what most of us would do; I leaned on people close to me. But none of my friends or family understood TBI, and none had been through an experience like mine. Looking back, I wish I had known a TBI mentor, a person who could truly relate.
I would have asked this mentor many questions. How did you cope? Was your relationship different? What did that feel like for you? How long was it before you could finally connect again?
All this happened nearly 11 years ago, before TBI appeared daily in the newspapers. War and football concussions have created many TBI headlines since then. The TBI caregiving community is growing as caregivers speak honestly about the challenges they face. When these stories and discussions reach the general public, more and more advocacy and funding will follow. There will be more resources and perhaps direct counseling for caregivers immediately after they are catapulted into caregiving for a loved one who has sustained a TBI … a much-needed parachute after the harrowing free-fall.
Here are just a few caregiver forums you can connect with online: