I am in San Francisco living with my parents for the winter. The quest? To find better medical help than I have found in Vermont, if it exists. My first stop? San Francisco’s TBI support group. I have found the survivors to be the best resources of information and helpful doctors. So, last week, I made my first post-TBI solo trip downtown in a big city. Getting there terrified me.
It is eight stops on the subway, followed by a two block walk and then reverse it to come home. Sounds easy right? On the subway, I pull my hair down like closing window shades, blocking out as much light and movement as possible. The winning game on this battleground is to minimize stimulation. The subway is rocking, shaking my head into total disorientation, lulling me into sleep, after a few stops I realize I am in danger. I stagger off the train and rest on the platform.
It is important for me to continually elevate my symptoms a little and let them come back down to baseline. It re-teaches my brain how to find my body. It is even more important that I don’t overdo it. When I overdo it, I can’t come back. I am trapped in an absolutely terrifying experience of being a consciousness without a body, completely incapable of getting back into my body, and unable to operate it. No moving, no communicating, no clue about how to come back. A moment of this is horrifying, and it has gone on and on, taking days to return to baseline. How can I begin to describe the sheer terror of being alone and unable to find your body? My desire has been to learn to enjoy it like one would enjoy a roller coaster, only I’ve never loved roller coasters and I have never succeeded in experiencing anything less than a panic attack. From the outside no one knows. I can’t communicate or move, and people think I am calm. What an illusion.
These moments are triggered by things as simple as movement, either of my eyes or a vehicle I am in, flickering shadows and light, passing scenery, a stimulating environment like a restaurant, mall or grocery store, that I never thought twice about before. Determined to reach my goal, I am now risking that alone, on a subway, in the city. People have other things to do beside taxi me for the rest of my life.
Being rattled on this train now, I realize the possibility of me getting too disoriented to move, endlessly riding this subway until the end of the line, going back and forth for hours, only getting more and more shaken and disoriented with each stop. The danger is real, and on this battleground I need to be hypervigilant. Resting in the subway station for ten minutes, going two more stops, getting off again. I keep my eyes closed and don’t look at anything. Finally I make it to my destination downtown. A fifteen minute has taken forty-five. I made it. I am feeling proud. I am drunk and delirious from the motion and need to rest.
The homeless men gathered on the floor of Montgomery St. station are hollering “hey pretty lady come and sit with us.” When I pass by they get more aggressive. “Hey blind lady, blind baby, you over there, you going skiing? I wanna ski witchu!” I can’t rest here. There are multiple exits and I am grateful I have written down which side of the street to exit the station at. Precision is important. I can’t afford the stimulation of Market St. with this already overstimulated brain. I need the shortest route to brainrest.
Upstairs on Market Street, a group of very well-dressed businessmen exit a building in front of me. It has been years since this Vermont girl has seen anyone dressed like that and it catches my eye. My eye follows to the name of the building, “The Palace Hotel”. Perfect! I am going to rest in the lobby. Only this isn’t just any hotel. San Francisco’s oldest luxury hotel provides such a contrast to the hollering homeless men a moment ago. Inside these doors everyone is elegantly dressed and coiffed, and classical music is being played on a grand piano.
I have stepped into the most beautiful crystal palace I have ever seen. Happy for any place to sit and rest my brain, I have been gifted with the most delightful spot. The room is filled with palm trees, beautiful music, and glorious light pouring in from an art deco stained glass domed ceiling. So often I have noticed that it is the beauty of my senses that slowly gently return me to my body when I am disoriented. I couldn't imagine more beauty than this. After a short rest, I move on toward the support group that is about to begin.
A large loudly croaking frog greets me as I entered the Center for Assisted Living. In my TBI daze, it takes me awhile to realize that I was triggering it by my standing there. The frog’s job was to alert the blind receptionist that I was there, and that it did. The receptionist introduced me to a woman in a motorized wheelchair who led me down the hall to the TBI support group. We passed a big homemade poster on an office door that read “Thank you MediCal for getting me back on my feet so I could come to work here”. Sweet. I had never been in a place like this. The Executive Director, also blind, had a guide dog at work. I was inspired.
The support group struck my new brain like a bunch of cartoon caricatures. A plaid flannel wearing Vermonter who looked just like Santa Claus facilitated. With a big fluffy white beard and a belly that really did shake like a bowl full of jelly, he had defied all odds, surviving an aneurysm twelve years earlier. The aneurysm left him incontinent and unable to swallow, speak or stand, he had relearned it all and was still in rehab. Flirting with him was a vivacious Parisian woman. She had slipped on a wet manhole cover on the street in the rain and laying in the road, was hit by a car. She spent five years in daily rehab and now had no heat in her home and went outside in winter to get warm. They talked of Dom Perignon, caviar, escargot and as long as they both ate the garlicy escargot, sex after the group. I kid you not. The young Filipino man who had a wife and two young kids at home had survived a stroke was as quiet as the Greek man who had been hit by a drunk driver was ready for a party.... until he fell asleep. It was the usual cast of TBI characters, with San Francisco’s international flair. You couldn’t make this up.
We talked about our stories, our recoveries, our challenges, and every TBI survivor’s favorite: compensatory strategies. Fascinatingly in common, we all have vacillated from the onset to this day, between thinking a)we had no brain injury and had nothing was wrong with us, b)we were emotional or just crazy and making this up, or c)being absolutely horrified and scared to death that something was seriously wrong. Even as Santa was being fed from a feeding tube and having his diapers changed, he thought nothing was wrong with him and didn’t understand why others were making a big deal. He swore he could walk until he fell off the rehab parallel bars so many times they stopped taking him there. Brain injury messes with one’s ability to assess oneself. The measuring stick is the exact part that is broken. TBI professionals call “lack of self awareness”. I prefer to call it helpful ignorant bliss, a perfect coping mechanism. Who could live in option C all the time and stay sane? The LSD trip-like reality of suddenly being trapped forever in a mind and body that no longer feels like yours with no escape calls for a brilliant strategy from nature like “lack of self awareness”.
Unfortunately none of them had much to offer in terms of the help I was looking for. None of them had my visual processing issues, my disorientation and dizziness, my overstimulation issues. They drove or took buses without a problem. When the florescent lights were making me intolerably jittery, tired, and unable to focus, I asked if we could turn them off and was told that was “a first”. I left feeling even more alone, a freak among freaks, stumbling through life looking for help. But now I knew where I was headed... back to my new favorite hotel lobby a few blocks away for a rest. I was exhausted!
In the luxurious lobby surrounded by the world’s most elegant business people, I took a nap. All the men in designer suits, all the women in gorgeous dresses and heels, me with my blue jeans, dark glasses, and white and red trekking poles, sleeping in a chair. Preparing myself for the final stage of the battle, getting home. I called for a pick up at the other end of the subway. I didn’t think I would make the walk home.
Feeling so good about myself and my accomplishment so far, my hypervigilance waned. I was thinking about the characters I had met. I forgot to pull the curtains of my hair closed. I forgot to close my eyes. I suddenly realized I was getting disoriented and needed to get off the train. “Next stop, I am getting off.” It was too late. I fell asleep. Vaguely aware that a few more stops had gone by. Fighting against the lull of sleep, like I was Dorothy in the poppy field, fighting for my life now. “Come on. Stay with it. You can do this. Focus. You can’t go away. Don’t go there. Get off the train immediately. This is serious. Focus. Get off the train. Come on. Come on. Focus.” Again, I passed out and woke up a few stops later. Terrified that I might really ride this brain shaking contraption into deeper and deeper dysfunction. “Gotta get off. Come on. You can do this!”
I stumbled off the train, barely able to walk, shuffling my feet, and collapsed on the nearest bench. I am aware that a look like the broken lady and that people are staring. I am beyond caring. If only they knew how hard I was working to just ride on a subway. I close my eyes and rest. Grateful that I thought to call for a ride. I was beyond being able to pick up a phone and talk now. Feeling like a baby with shaken baby syndrome, what is it about movement that is so hard? My mother helped me into the house, and into bed, where I collapsed for the rest of the day.
My daily life has become so surreal. So full of challenge and yet so full of magic. Everyday is an adventure that I have no idea how it will turn out, I go with the flow with no ability to control life. The juxtaposition of these two vastly different worlds on this day feels surreal. The old me would have loved visiting this luxury hotel, but would never feel a part of it. The old me would have never had an opportunity to associate with the disabled on such intimate terms. I certainly would never have felt a part of that either. Yet here I was, enjoying them both, and equally at home in both worlds. Feeling like I belonged in both equally. How was this possible after spending 2 ½ isolated years feeling like I don’t belong in society anymore?
Somewhere in there, something shifted. I am more at home with me. It doesn’t matter where I am or who I am with. I am home. I am no longer plagued with the ceaseless voices that argue my insufficiencies, and the ego that feels so separate from the group, any group. I am whole and my mind is whole. It is no longer divided into all the parts that argue with each other and judge each other. The constant judging and bickering in my head is gone. No longer do I constantly work at choosing better thoughts. No longer is “thought”, “observer of thought”, “judger of thought”, and “manipulator of thought” all happening at once all the time. That is just too much multi-tasking for this new brain. In it’s place is a slow, quiet unified voice. I am pure presence and I belong.
