Living Like a Refugee

I have become a winter refugee.

When my TBI first met winter four years ago, the snowfall made my head swirl so badly I could barely walk in my house. Walking outside on the slippery white stuff was completely impossible. My head swirled, my legs stiffened up, my brain unsure of where the ground was. After wall-surfing in the house for a few weeks, with the shades closed getting more dizzy and depressed, I realized I had to get out of here. This stress was not a recipe for healing.

I have never been a big fan of Vermont winters. I grew up in San Francisco, and living in the snow has always felt like a foreign country to me. Five months of it feels like living on a foreign planet. I have never felt comfortable walking on icy sidewalks. So I am not upset about missing out on the winter magic, that is a blessing. But I am upset about leaving my youngest child for a large chunk of the year. That is a painful, heart-wrenching loss.

Every year I question it. Can I stay? Am I just being a winter wimp? I feel guilty. Every year I get a few days of snow to re-confirm that I have no choice. What is it about the white stuff? The ground is white, the sky is white, and I start to stutter and stumble like I did four years ago; my son urging me "Mom, you have to go. I will be ok. Just go!".

This winter, I was determined to test myself and walk a half mile home. I had my trekking poles; I should have been able. Each block got harder and harder. Exhausted, slowing to a snail's pace, and unable to see well, with my visual field narrowing to a pinhole, I refused to give up. Finally only two blocks from my destination, I could go no farther. My brain was so scrambled, I could barely figure out how to call my daughter for help. She found me hugging the street post for dear life, unable to move or figure out where my legs were, and done for the day. "Where are my legs?" was all I could mumble before I fell asleep. I am not just a winter wimp. Every brain injury is different. This is mine.

My theory is that my brain is already working so hard to understand where my body is in space, that winter boots don't offer enough tactile information, while whiteness doesn't offer enough visual information. It is the same in a white room, bathtub, or a bright sidewalk. My broken optic nerve can't translate the visual information to my brain and it is as if I can't see. My brain gets even more strained and every other function just goes to pieces. I do much better in vibrant colors of summer.

My neuroscientist cousin in France immediately understood it and learned about this in her training, but in this country I am treated like I am making this up because I don't like winter. I would love to see the documentation on this and have been unable to find it. Does anyone have it? If so, please add it to the comments below for everyone to share.

It is a strange life I am living. I rent out my home for the winter, and spread myself among my parents and whoever will adopt me. I keep moving, trying not to overburden anyone. I would like to go home. Enough of living out of a suitcase like a gypsy, waiting for it to be safe to return to my life! And what do I do in the long term? Move? This does not appear to be improving.

This brain injury has taught me to take care of myself at a whole new level. It has taught me that nothing, nothing, NOTHING, is more important than health...  which includes emotional health and happiness. Sometimes that means making courageous and unconventional choices with our lives.