It is so very hard to lose one’s independence at any age. No one ever thinks it will happen to them. Not being able to walk much, drive, or take a bus, I am pretty stuck. I honestly have no idea how to do this. I take it one breath at a time.
Free falling through space on my own, I have been searching for a way to manage this long-term. The system won’t let me in Adult Day Care, I am too young. The swamis won’t let me in an Ashram, I am too disabled. Searching for solutions, I actually did ask both.
My next idea is to search for a safe little town with good weather, that has all I need within a short walk. I have just flown to a small town in Central California to see if I could function on my own here. The solo adventure itself is daunting. I pack barrels of courage in my suitcase.
As expected, three plane rides have shaken me up so badly, that I can barely move or see. My vision has shrunk into a nauseating peep hole and I can’t tolerate moving my eyes at all. The slightest movement of my eyes disorients me and makes me even more seasick than I always am. Information is not traveling from my eyes to my brain. It takes 3 hours to understand my way around my tiny studio. Expanding my world to the patio takes another few hours.
I have no idea how I will get groceries. Even at home, getting food is always the hardest thing for me. The over-stimulation of supermarkets causes my brain to shut down. Somehow, food always finds me when I really need it; like the Indian saint, Sri Mata Amritanandamayi, who lived blissfully in the woods, and animals and eagles dropped food in her lap when she was hungry.
Today’s “eagle” takes the form of a friend of a friend, who calls to welcome me to town. “The Farmer’s Market is today, would you like to go?”. She is a occupational therapist, she gets me. I hold on to her arm for dear life in the visual chaos of the crowd, and unexpectedly, I have produce!
It is magical the way my needs get met, when I never have any idea how they will. I am no longer living a rational life. I am grateful for the gem of kindness.
The Farmer’s Market put me over my stimulation threshold, and I can’t wake up. I get up once to take a shower which exhausts me so much, I fall asleep again; once to get dressed, which exhausts me so much, I fall asleep again; once to make coffee, which exhausts me so much, I fall asleep again… so much for caffeine. Finally at 2:30pm, I am awake.
Today, I will venture beyond my studio... with the goal to find lunch. There is a cafe four blocks from here. Expanding my world beyond my studio will be a big feat... beyond what anyone without a TBI can imagine.
Concentrating to get through the mental fog, I talk myself through it out loud. “Pull up walking directions on your phone. Study hard to make sure you have a sense of where you are going. Put on the green tinted glasses that relax your brain. Check directions again. Put on the goofy Vibram toe shoes so you can feel the floor. I forgot the directions. Check directions again. Put on the hip belt full of rocks.”
The hip belt reminds me of the confusion and alarm on the airport TSA agent’s face two days before.
“What is this?!”
“It is just rocks.”
“Why are you bringing a fanny pack full of rocks on the plane?!” she accused.
“They remind me where my body is…..I am lost in space and my brain can’t tell..”
She didn’t know what to do with that.
I only brought one trekking pole on this trip. I need two. I look around the studio. I find a broom stick. I am going out with a trekking pole and ….a broomstick. My life is ridiculous. I am thankful it doesn’t still have the broom on it. That would be an odd picture. But I would do it with dignity.
I write up a little note, the way I learned in Rehab, “Hi. I have a brain injury and I am lost. Can you please help me get to XYZ address? If you touch my arm firmly, it help me to get oriented to where my body is. Thank you!”. I make sure it is the page open in my little notebook so I can pull it out (hopefully) when I can’t move, read, or think.
Next, I get dressed up. This too, is a compensatory strategy. If I am relying upon strangers to help me, I don’t want to look like a crazy person. I figure it is better to have them confused by me than scared. “Always look your best, when you go out with a rock belt, toe shoes, green glasses, a trekking pole and a broomstick!”. That is my new motto.
Finally, I walk out the door for the giant four block excursion.
I am so curious to see this town, but I have to be really careful not to look around and waste my little visual processing power. I pick a spot straight ahead and focus intently on it. Every half block, I rest, and hug a tree. Trees keep me grounded, they help me make my way through town. I have hugged so many trees in the last four years, I have learned to listen to them and sense their personalities. I love trees. They have become some of my best friends.
At the cafe, I find it is crowded and noisy, and I am about to topple over. I can’t stay in this environment. A sweet blonde waitress cuts through the standing room only crowd, and dashes across the room toward me. “Hey sweetie, do you need some help with the menu?”. She puts a firm hand on my arm. I smile, it’s just what I needed: not only a nice person, but one who knew to touch my arm and remind me where my body is… as if she read my note. I thank her for her kindness, and tuck it into my basket of good things from today.
I collect gems like this as I go along. At the end of the day, I look back and admire my basket of sparkling gorgeous jewels that add beauty to my life. It is the kindness of people that fills my basket on a regular basis. It is what keeps me going.
Leaving the cafe, hungry, lost and completely disoriented, I get whistled by a truck full of men. My life could not get any more ridiculous. Maybe my “look good when you carry a broomstick” motto has worked too well. Or maybe sleeping endlessly is the best beauty product ever. Apparently, my outer appearance does not at all reflect my fragmented inner state. This is both a blessing and a curse. I decide to appreciate the compliment, and tuck another colorful gem in my basket.
I find a bakery and buy some bread. Three blocks later, someone tells me that my purse is open and upside down. I had no idea. By now, my vision is incredibly restricted, and I have lost any sense of having a body.
I wonder how much money I have lost.
Grateful for this person, and for having bread, I put two more gems in my basket. My favorite sparkling multi-colored gem today, is the sudden realization that I have come so far with accepting a life without control, that I can now laugh at the mistakes that had me crying for three years straight.
I have learned trust, to stay in the moment, and look for the good. Where attention goes, energy flows. I place my attention on the gems in my basket at the end of the day. When it rains, look for rainbows.
Happiness depends upon gratitude for even the smallest beauties of life.
So what if I was walking down the street dropping all my money. I got bread today!
I intended to visit the Unitarian church service to meet people here. I can’t wake up again. Frustrated and embarrassed, I arrive just in time for free coffee and food. I decide to forgive myself…. it’s a constant practice… over and over…. I go in anyway, and hope the man I was talking to over pasta salad didn’t notice that I picked up my fork by the wrong end… twice. My hand was gooey with salad dressing. But I have food again. I am doing this solo thing!
I have become one of those people: the people who wander into a church for free coffee and food.
Yep that is me today. This is my new life.
And I love myself anyway.
TBI living has taught me the biggest life lesson of all: to forgive myself and be compassionate with my struggles. I get so frustrated with myself, but I know that does not help me heal or thrive. I express it, let it go, and choose love and forgiveness constantly. I try to send my brain more love with every screw up. Sometimes it works.
Having a scrambled brain that can’t get anything right, you have to laugh at your imperfections and find amusement in the absurdity of life. You have no choice.
It’s that or jump off a bridge. I choose laughter.
Like most of us, I have been driven by an intense need for perfection and belonging for my whole life. Now, I have become so imperfect that I have finally realized that it is futile to keep striving for perfection.
I wish I had known that it was futile to try all along.
I wish I had known it was ok to relax and just be me, warts and all. Not only am I imperfect, but I write about it publicly, because I hope it gives life perspective and sets others free too.
I am at peace. Limitation has never been so liberating.