Inside those While Vans -Part Two

Last month, an elderly woman boarded the SSTA van and said to me with a sad sigh, “it is so hard being a shut in”.  I looked right at her replying, "I couldn't agree more".

I hate it. It is absolutely crushing to lose once independence. Of all the losses since my TBI, this is hands down the hardest. Being stuck in the house for months and years is like slowly chocking to death. Humans need each other.

Startled out of her emotional state, the woman did a double take and stared at me “Oh my gosh. You are half my age. Why am I complaining?” 

In the conversation that followed, I shared “I have lived more in my first 46 years than most people do in 90. I've already lived a full life." It was a humble sweet moment where two human beings help each other shift from despair over what we don't have,  to finding gratitude for what we do have.

I really have lived a full life already. I have backpacked through eight European countries, spent six months backpacking through Alaska, stalked grizzly bears, kayaked remote islands in Baja, swam with wild sea lions and dolphins, been thirty feet from a gray whale nursing a newborn, rock climbed Yosemite, helped Youth at Risk across the country transform their lives, created an award winning documentary about said Youth at Risk, zip-lined, birthed two children at home, been a single mother, attended forty births as a doula, and as a hypnotherapist, helped  nearly a thousand people live more empowered lives. I intentionally did anything I was afraid of. I wanted to exercise my courage muscles. I was afraid.... and I did it anyway.

I was not on the sidelines of life, I was on the playing field. Now I sit on the sidelines... watching the players on the field. I now face a life where I wonder if I will ever feel comfortable walking down a busy street or traveling again. I miss participating: being able to go to parties, be in a crowd, or a concert, drive a car, ride a bus, travel, kayak, hike, most of all, I miss dancing. So if you're sitting on the sidelines of life, please don't wait. Get on the field! You don't know what tomorrow will bring. There is no time to be putting off living one's life and following one's dreams. 

Being able-bodied is a temporary condition. Whether by illness, disability of death, we will all lose our abilities at some point. Don't take tomorrow for granted.

You too will want to say the elderly woman on the van that you have lived a full life already. 

The Inside Scoop on Those White Vans

Nine months after by brain injury, I discovered Rehab....
where the occupational therapist took away my driving privileges. The experience 90 year olds fear most had now arrived in my life ....40 years early.

My world had already gotten smaller than a postage stamp, and in that moment, my entire universe collapsed in on itself. I was a single mom in a rural state, trying desperately to hang on to my last remaining role, that of "mother", and now I couldn’t drive?! How was that going to work? That would have been hard enough without a TBI but with one, life became impossible. 

Getting food meant walking a nauseating half mile to the grocery store, with trekking poles in each hand, wearing an empty backpack to carry food home in. I had mapped a path with 3 benches and 2 churches, where I could sleep along the way. The excursion took half the day. Recovering from it took the other half. After the first grocery trek, I learned what could not be transported in a backpack. We had already given up so much. Now we gave up something as basic as eggs. I spent months confused about how to get eggs. I just couldn't figure it out.

I couldn’t take busses because the shaking disoriented me too much. My world collapsed in on itself so hard, it must have fallen through a worm hole. For on the other side, I found myself in another universe.... the strange foreign universe of Special Services Transportation (SSTA) vans. These are the white vans all over the roads, that you never notice until you start using them. I was saved! 

My white stallion however, was more like a white nag. I could now get rides, but they wouldn't drive my son. Every time he needed to get somewhere, we had a problem. Our lives became even more overwhelmingly complicated. I was as dizzy and loopy as if I had drunk 3 6-packs, and getting him to his appointments was a puzzle I couldn't solve. After calling a few friends, I would give up and stress out for four days, losing sleep about an upcoming appointment. Somehow, by the grace of the higher powers that watch out for us, it worked. More often than not, someone would call while I was sitting in tears, feeling helpless that he had to be at the orthodontist in an hour. Angels appeared.

When I started using the special services transportation vans I hated it. While I was grateful for the ride, I had lost my freedom. Imagine.... to get anywhere, it needs to be scheduled at least one day in advance. The drivers can pick up 15 minutes early or 30 minutes late. You have to pad each errand by 45 minutes on either end. That's 90 minutes extra per errand. If you are like me, and you are used to efficiently lining up three stops in the same area, forget it. One errand at a time or you will have to pad each one with 90 minutes. If they didn't have what you wanted at the store and you need to go to another store, forget it. If you spontaneously realize there is something you need or want to do that day, forget it. You can't. There was and still is, nothing efficient about my new life. 

I was severely depressed. I didn't know what I was doing there with the elderly and disabled people in wheelchairs who made me feel even more broken and disabled. This was a new world I was immersed in, and I felt out of place, as if there was some big mistake. They didn't know what I was doing there either. The drivers did double takes.... until they got to know me. 

Pre-TBI, I loved being of service to others. Now I felt useless. What was I doing stuck here in this van with broken people when I had work to do in the world? It made me nuts, until in an aha moment, Oprah-style, I realized that this was an opportunity to make a difference with people who needed it the most. The people on these vans had very difficult and very lonely lives. 

This was actually an opportunity I would never have had before in my able-bodied active life full of able-bodied active people. 

I began practicing just Being Love on the van. It became my new ministry. 

Adventures began.

I started to talk with people. Amazing conversations like this unfolded. 

Passenger: "I don't know where I am going. I'm scared ." 

Me: "It's ok. The driver knows where you are going. You'll be fine." 

"Driver, where am I going?" 

"The same place we go everyday David. You are going to Adult Daycare." 

"Oh. What do I do there?" 

"The same thing you do everyday David. Here we are."

Me (delivering a hypnotic suggestion): "David, you are going to have a great day here today."

David stops, and stares at me for a long minute, "Thank you very much for saying that. Thank you for noticing me." 

My heart is so deeply pierced, tears fall out. 

I wonder how many people ever see him or talk to him? A simple little connection can make such a huge difference. I used to have to work really hard doing complicated hypnosis techniques to feel like I helped people. It really is simple.

One day I was having a lovely conversation with a passenger who had Down's Syndrome, until I realized that he wasn't talking to me. He was just talking. I smiled and stopped my side of the conversation and beamed some love his way. 

As he got off the van at Daycare, he turned back around, walked toward me, and leaned in to kiss me. Before I could recover from my shock, he literally skipped off the van wearing the biggest cutest grin you’ve ever seen, like that was the biggest thrill he had ever had. The driver and I were left completely stunned and laughing all the way home. It made SSTA history. 

I'm turning lemons into lemonade.

Peace, Wholeness, and Dignity

After missing nearly every school function for the three years since my brain injury, this year, I went to Parent Night, determined not to miss out on my child’s life any longer. I hired my neighbor to drive me there and pick me up, the expense adding to my fire and determination to be there, meet the other parents, and get involved.

The room was abuzz with parents talking, and a hundred conversations going on at once. The overstimulation and noise was a recipe for instant brain scramble and more than I could handle. I left the room, doubting my decision to come, and waited down the hallway. Feeling more than a bit foolish and anti-social every time someone walked by and told me the parents’ meeting was down the hall. “Yeah, thanks.” How long could I pretend to admire four student paintings for? Apparently 30 long minutes.

Finally, the noise dimmed down, the meeting was beginning. This was the cue I had been waiting for, and I walked in, wearing huge dark glasses and balancing with my trekking poles. The only entrance was in the front of the room, there was no hiding. The entire faculty and 150 parents watched me enter. The emotional stress of all those eyes staring at me, and all the psychic stress of all those thoughts coming at me were enough to put my brain into complete overload. The circuits went down. I was completely lost and frozen. I had no idea where my body was or where the floor was, I stepped into mid-air and my foot fell through it, like stepping down a stair that wasn’t there. I stumbled and then froze awkwardly, unsure where my body was. I had no idea how to move. Time froze with me in that eternal moment. I always sense time freeze when the shock of my injured brain dawns on people. This time it seemed multiplied by the numbers of people watching me.

In that eternal moment I could see through every person there. I looked at the crowd and saw that the room was equally divided. One third of the crowd was absolutely terrified by me, and at a loss for words. It was a look I had grown accustomed to. I represent the vulnerability we all have to brain injury and that horrifies people... me included. One third of the crowd was in judgement and disdain, wanting nothing to do with a weirdo like me. The remaining third were full of kindness and compassion and were ready to jump to help. The kind faculty saved the awkward moment, dashing towards me offering assistance and bringing chairs. It took three teachers to get me to a chair four feet from me while the entire parent body stared. This wasn’t the kind of “being a presence at my son’s school” I had in mind.

I should have been embarrassed and mortified. I should have wanted to run and hide. Here’s the amazing part: I didn’t. I would not have minded if that frozen moment actually did last forever, because in that moment of eternity I realized that I was at peace with me. No one else in the room might be, but I was. This was the moment I realized I had finally learned to accept this new me. There was peace in my being and a joy in noticing that not only had I learned to accept the new me, it was a deeper acceptance than I may have ever felt. I felt whole. I could have stood in that moment forever.

You see, the old me would have been concerned tonight about not knowing anyone, dressing right, looking right, saying the right thing, and needing to fit in. The new me does not have the mental energy or ability to have those concerns. I am concentrating on how to walk and how to see. That keeps me in the present moment, and in the eternal moment of NOW, there is no energy to waste on such silliness. The new me knows that I am different, I can’t fit in even if I want to. There isn’t even any point to trying to be like everyone else. I am free from that human plague: the deep desire to fit in. Not that I don't have the desire, I just don't have the ability, so I can't waste energy on it.

Later that night, in the math classroom, a geometry problem was posted on the board. The math teacher called on me to read it out loud. Of all the parents, he called on me. I sat there for a minute, trying to make sense of the bouncing hieroglyphics on the whiteboard. Florescent lights, bright white, and my visual processing don't get along anymore. The harder I tried, the more my brain couldn't translate the squiggly lines into any meaning. Long silence. “Um, I can’t read”.

He had called on the wrong mom. Trying to hide his discomfort, he kindly read the problem for me, and then asked how I would proceed. I had no idea what he was talking about.  My brain was not processing information right now. Another long silence. “Sorry, I don’t understand numbers either.” 

I had just admitted to the parents of my child’s classmates in this highly academic school, that I am an adult who not only couldn't figure out where my body was a moment ago, but who often can not read or understand basic numbers. Great. What’s a girl to do? Run and hide and never go out in the world again? Or hold your head high. Sometimes I run and hide. Going out takes courage. Always I chose dignity. I’ve had lots of opportunity to practice dignity in the last few years.

I have learned to carry myself with dignity in the most undignified moments. I have learned that dignity comes from deciding that loving yourself is more important than caring what other people think. I have let go of the curse of perfectionism, and embraced that being human means that you are an ever-evolving being and that you are not supposed to be a perfect finished product. We are never done evolving. And we are all imperfect, despite the image we portray to the world. Maybe our imperfections are lovable too.

I am moving forward, out of the house and into the world with dignity. Because dignity comes from the inside regardless of our incompetencies. Dignity is an inside job. It comes from a decision to learn to love and accept ourselves just the way we are, warts and all. If I can do it, so can you. Hold your head high. You are good enough, just the way you are, and that knowledge will make you whole.

I'm Three!

This summer I passed my third anniversary. When you acquire a Traumatic Brain Injury, you also acquire a new unforgettable date. Added to your annual markers of time (birthday, anniversary, and Christmas) is your TBI anniversary.

Survivors honor that significant date with a strange mix of melancholy, and reverence. 

This is the date that we learned that no matter how smart, or witty, or hard we try, we do not control life. That illusion of control is forever shattered, and deep humility takes its place.

It is more like a “death date” than a birth date. We all have the day we will die, that we pass every year and we don’t even know it. Having a TBI, we actually know our death date. On that date the person we knew as “me” died, and a complete stranger with the capacities of a newborn showed up in its place. We became a newborn baby all over again. Dependent and incapable, a stranger to ourselves and to our families. Like any newborn, it takes years to get to know this new person. We obsessively observe ourselves the same way we once observed our newborn babies for clues to who this person is.

Among my brain injured friends, I have seen process unfold like the stages of grief. The first year: sheer terror and confusion interspersed with a heaping dose of denial. “I don’t have a brain injury!” The second year:  more terror, and depression and despair as the un-ending reality begins to become apparent. “I have a brain injury and it’s not going away.” The third year: beginning acceptance and rebuilding a life with what you’ve got left. “This is my life. Now what??”. Now I understand all that I can't do, so what can I do?

Past my three year mark now, I am improving enough to start seeing a world beyond TBI. I can see myself re-joining the world one baby toe at a time. I can now imagine a future worth living and am grateful for my constant intense focus of the last three years "just keep your body alive and don't let the depression drown you". Not easy for someone as seemingly drunk, disoriented, and visually impaired as I am. I have kept my body alive long enough to see the light.

I feel like a toddler, nervous and excited to be off to pre-school and to see what the future holds.

Recipe for Disaster

“I am terrified of cooking now”, I told a friend last year. “Why? You are a great cook!”. "I am not afraid of people judging my cooking, I am afraid of the act of cooking." The positive side is that by avoiding cooking, I have avoided serving Alpo to dinner guests like a friend with a brain injury once did.

I used to be a good cook, and cooked dinner for my family every night for 20 years. I was a foodie. I grew up in a french house where food and meals are the center of life. My mom had a french restaurant in San Francisco and I was waiting tables by the age of 14, and prep cook by 16. I have every restaurant job there is from dishwasher to sommelier. Post-brain injury, I never cook. Cooking creates a state of high anxiety that always ends in exhaustion and irritability. I wasn’t sure why cooking was so terrifying until Vision Therapy showed me where I was having difficulties. I has taken almost three years to break it down. Finally I understand!

First, cooking requires decision making and planning. What will you make? That is an executive function skill of anticipating and planning for a future moment. My mind goes completely blank and I don’t know where to look for an answer. I know it’s in there somewhere! But how do you get there from here?? I dunno. The neuro-connections are missing.

Second, my eyes don’t converge at a distance of the kitchen counter or closer. When I look down at the cutting board, it takes a lot of work to not see double, and that constant strain exhausts my brain, eventually rendering it into jello.

Combine that with my hand-eye coordination being off an inch or two, and skewed depth perception, and you have a great risk of sliced finger for dinner. Cutting the actual vegetable not myself requires tremendous focus and concentration.

Next mix in a lack of fine motor skills. My right hand feels like a club and is very clumsy, so spillage happens, and a dash of spice becomes ¼ bottle of spice, not to mention what lands on the floor.

Now add a touch of multi-tasking, because that what cooking requires. You are always chopping vegetables when water is boiling or chicken is cooking. Multi-tasking with a TBI is like juggling way too many balls in the air. It doesn’t end well.

Now throw in a large serving of not being able to move your eyes without complete dizziness and disorientation, and mix with the least amount of spinning around between sink, stove, and refrigerator necessary. Which if you have never noticed, is a LOT! Now you are completely drunk. (Remember don’t slice your finger.)

Now toss in a pinch of your kids trying to talk to you while you do all this, and try not to scream or cry. ....They know better now.

Finally top it off with memory issues and you will forget all about that pot on the stove. “Everything Brulee” is your new specialty unless you have bungee corded yourself to the stove, like you learned in Occupational Therapy.  

TBI Cooking:  It’s an interesting recipe for disaster. 

I think I will try it and watch those neurons grow.

The Race Against the Bras

The Race Against the Bras officially ended today.

It started one post-TBI day when I looked at the aging bras in my drawer and wondered how in the world I was ever going to buy a new one. Malls are not possible. Even armed with dark glasses and earplugs, stepping into any store sends me into instant sensory overload. Fluorescent lights, inability to filter visual details, music, people moving, and the hundred decisions required, make for a near-lethal combination. Every color and every word on a package and every item jumps at me with equal intensity. I have no filter to tune out the millions of visual details and just find what I want. My visual field narrows to a peep hole, my dizziness grows, the floor disappears, I have no idea where my body is, and I am nauseous. 

The anxiety escalates despite deep breathing and positive self-talk and ten minutes into it, I am having a total meltdown and needing to dash outside, purchase completed or not. My internal time bomb is ticking when I step into a store, and I know I have limited time before I explode. Every woman knows you just can’t buy a bra in ten minutes. You have to try on twenty to fit one that fits. There was no way I could do this.

There was only one solution. I had to get better before all my bras wore out. The race against the bras began. I was going to win this thing. 

Nearly three years later, I have gotten good at paring my life down to the bare necessities and doing without. I am down to two bras: the one with the wires poking out of the seams and into my ribs, and the crazy leopard skin one that doesn’t fit that I bought as a spoof five years ago. It’s really time.... and I still can’t go into a store for more than ten minutes. Does that mean I’ve lost the race?

Compensatory strategies to the rescue! Instead of going to the Department Store or TJ Max I went to the high end boutique, grabbed the nearest saleslady and ask for help. Wow, no music, no florescent lights, and efficiency. I am out of there in no time... at three times the price. Such is the price of victory. Brain injury is expensive in ways I never dreamed.

I am not better in the way I thought I would be, but I am better in finding my way. Since I made up the race, I get to make up the winner. I could say I lost or I could say I won. They are both true. Life is all in the attitude right? You get to chose if you are a winner or a loser. Do you beat yourself up for being a loser or do acknowledge the ways you are winning? What story do you want to spin? I recommend the one that makes you feel better.

Today, one more mountain has been conquered. I won the race against the bras.

An Education from A Brain Injured Veteran

I just watched 60 Minutes great report on brain injuries among veterans, and was particularly struck my one line. The veteran is discussing the challenges of having his brain injury be completely invisible to others. "I would rather be a single leg amputee than a brain injury survivor." "Really?!" asks the reporter incredulously.

"Really?!" I want to ask that reporter. How could that possibly be so incredulous... Unless you have no clue about what it is to live with a brain injury. The comment spotlighted the mass belief, that "if you can't see it, it can't be so bad". While losing a leg is undeniably horrifying and traumatic, if given the choice of that or a TBI, I would make the same choice as the veteran. I'll bet any TBI survivor would say the same. Sure I couldn't dance with an amputated leg, but I can't dance with a TBI either! Nor can I easily walk down a sidewalk, drive a car, remember what I did this morning, cook a meal, read a book, understand a bank statement, ride a bus, be in a crowd, sleep, go to a party or buy groceries.

What people seem to not understand is that brain injury is different from any other injury because it changes not just the content of who we are, but the context. It changes the very things we identify as our personality and our sense of self. It changes the container that we are, and in doing so, it changes every aspect of life as we have known it. Over and over I hear brain injury survivors say "I don't feel like me anymore. I feel like someone else is living my life and I miss ME." We don't get to continue our lives as "us with an issue", we are no longer "us".

Is there really anyone who would prefer to have a working leg than a working brain? It reminds me of a woman I know with a brain injury who broke her leg. She was amazed at how much attention she received because she had a cast on her leg. To her, given what she had lived through, this was no big deal. The leg would heal in a matter of months. Her brain had been injured for a decade. Every day was an act of courage to get up and try her best to function and no one noticed. Brain injury might be invisible on the outside, but it is never invisible from the inside.

I am curious, what surprises you more, the veteran's statement or the reporter's surprise?