Person, Man, Woman , Camera, TV: What I have in common with Donald Trump

I never thought I’d say this, and certainly not publicly, but I have some things in common with Donald Trump.

Boomers: 

 We are both baby boomers, born in 1946. Post war, the rise of rock n roll, Mo Town, Aretha belting out, R E S P E C T, Elvis crooning, Now or never, and Sam Cook promising, A change is gonna come. I wonder if he had his own turn table to play a stack 45’s? Does he remember the day JFK or MLK died? Mario Savio, extoling, “Don’t trust anyone over 30?”, and Woodstsock, singing for our lives? Those events changed my young life. Those were the years.

Where’s my Roy Cohn?

Trump wondered aloud, to his then lawyer Michael Cohen, “Where’s my Roy Cohn?”  Seems like Roy played a significant role in each of our lives. I learned Roy Cohn’s name as a child, listening to my parents talk about the McCarthy hearings and the executions of Ethel and Julius Rosenberg. It was a scary time. People were afraid of being arrested and jailed, simply because of their political beliefs. I was far too young to understand Roy Cohn’s Machiavellian tactics when denouncing people as Communist, getting mobsters out of legal jams, or ensuring that the Rosenberg’s were executed. I do remember, vividly, seeing the 10-year-old Michael Rosenberg and 6-year-old Robert, walk up the stairs of Sing Sing Penitentiary to say a final good bye to their parents. My 6-year-old self was afraid that that my parents, too, might be killed, leaving me and my 10-year-old brother orphaned.

A little fear goes a long way. The execution of these two very ordinary people and the narrative cast around them, fueled the flames of the Red Scare for decades. Even as the head of Russia is embraced by our current US president, the fear of Communism pervades a generation, that knows nothing about Communism, other than to fear it.

Vietnam War

Like all of our age peers, the Vietnam war played a big role in our lives, mine and Donald’s. We had to make decisions, take sides, become politically active or remain steadfastly passive as the evening news announced the numbers of American’s who had died in Vietnam that day. My fiancé decided to join the Navy and enter Officer’s Candidate School so that I would have more money to live on after we married, and could complete college, while he did two tours of duty in Vietnam.

Poor Donald had to file for draft deferments, over and over again, so that he could finish college and avoid any tour of duty. The first 4 deferments took him through his undergraduate education. Then, sadly, he had bone spurs, resulting in what became a 4F, unfit for duty, classification. We all knew, in those years, what 1A and 4F meant. 

Montreal Cognitive Assessment Test

Our greatest commonality is our relationship to the Montreal Cognitive Assessment Test, the instrument used to test cognitive capacity. President Trump has introduced the American public to this test and some of its features. Let me share my experience. 

I suffered a severe Traumatic Brain Injury as the result of a violent attack by a stranger. (Oh. Maybe that’s another thing we have in common. We try to stay away from violence)

Because of the TBI, I am frequently tested to check my current level of cognitive acuity.

The first time I took the test, about 8 years ago, it lasted for 5 hours. At that time, there was no baseline about the extent of brain damage I had suffered, so the test was very thorough. I was anxious and embarrassed to be sitting at a table with blocks, paper, and pencils. I was asked to arrange the blocks in certain configurations, a rectangle or octagon; identify pictures of animals, and reproduce a drawing that contained angles and squares. There was a vocabulary test, one minute to name as many words as possible that began with the letter “C” (or another letter), count backward by 7, starting at 100, and recall a set of words told to me at the beginning of the test and then asked again at different time interval, like Person, Man, Woman, TV, Picture. When I realized that I couldn’t put the blocks in the shape of an octagon or draw a picture of the hands of a clock showing 11:10, I started to cry. I, like President Trump, considered myself smart. I was the valedictorian of my high school, class of ‘64, held a doctorate in education and, at the time, was a college professor. I could tell time, but not draw it. 

Over the years, I’ve taken the test many times. Now I take the 30-40 minutes to version. I still can’t draw the hands on a clock showing time. In the course of 8 years, I’ve actually improved on other parts of the test.  I’m not as frightened and I understand that what seem like silly questions, identifying a picture of an elephant, repeating the months of the year backwards, or remembering the pieces of a story, 15 minutes after hearing the story, really do assess my cognitive functioning. While I am accustomed to the test, it continues to be a reminder of a significant, painful and traumatic injury.

The test is, in fact, very serious. For people, like me, with brain damage, it is used design treatment goals and measure change, whether positive or troublesome. For people who may be exhibiting signs of dementia or other brain maladies, it can provide information that to help make decisions about their safety, such as, will she get lost, forget that the stove is turned on, forgot his address. 

For individuals and their families, these are not SAT tests, with results that offer bragging rights. These are tests that show fragility, vulnerability, decline, decay. The test can also illuminate positive change, often related to the development of new neural pathways. 

I laughed when I first saw the clip of the president recounting his test experience and results. My reaction came in large part from my own discomfort, with a raw, vulnerable part of me being caricatured in full view. For those us who cannot recognize the elephant or get a “perfect” score on the word list memory part, there is nothing funny and nothing to boast about publicly.  The taking of the test and the outcome, is a painful reminder of what has been lost and perhaps, what lies ahead. For anyone who has seen a loved one suffer significant cognitive decline, President Trumps recitation of person man woman TV camera, resurfaces emotional memories of watching a slow, unstoppable, decline.

His intention is only to speak to his experience and demonstrate to the public his acuity. However, as President, he has a greater responsibility. He must demonstrate what Paula Gunn Allen calls, Linguistic Honor. It is a quality salient to everyone, but his reach and sway are formidable

She tells us that, “Tribal people say the words are sacred…you should in your being recognize that when you speak, your utterance has consequences inwardly and outwardly and that you are accountable for those consequences.”

From the perspective of linguistic honor, person man woman TV camera, are sacred and must be uttered with full awareness of the impact on the listener. In respect to thinking about how my language and actions impact others, Donald and I have no common ground.

An ordinary day

I started this blog as a way to have a conversation about what life looks like and feels like for those of us whose lives have been reshaped by traumatic brain injury. It’s hard to describe what can’t be seen. 

So, here’s a snapshot of an ordinary day. Hopefully, my observations provide images and feelings to an invisible injury with no terminus.

I don’t have trouble falling asleep and I wake up after 7 or 8 hours of sleep. It’s really more accurate to say I am no longer asleep after 7 or 8 hours. I don’t really WAKE up. I often wish I could go right back to sleep again. I manage, though, to get up and start the day. For most of the 10 years that I’ve lived with TBI, I wake up tired and remain tired throughout the day.

I have been blessed with remarkable doctors who have for years tried to find ways to reduce what, for me, has been, debilitating fatigue.  I re-started 6 months ago to use a CPAP machine. I tried a CPAP machine 2 or 3 years ago and found it awkward and difficult to use. When my second sleep study showed that my oxygen levels were dangerously low, I made a commitment to try again. The CPAP paraphernalia has been re-designed and is more comfortable. I use it every night.  I often wake up alert and have energy that lasts until the late afternoon. A victory!

I always have a list near me with all of the things I need to do in a day. Typically, the list holds the mundane tasks of everyday life, grocery shopping, laundry, calls to make for an appointment or pay a bill. It sounds so simple,

Maybe after breakfast I go grocery shopping.  I bring my list that I’ve checked and double-checked, hopeful that I don’t have to make another trip to a grocery store.

I try to go to a familiar store, with a layout that I know how to navigate. As soon as I enter the store, I’m confronted by sensory overload, fluorescent lights, music, signs of all kinds, and people moving and talking. I am soon overwhelmed by too much stimuli. I stop, take a few breathes and refocus on my list. I continue to systematically go up and down each aisle. After some minutes, I start to lose my focus. I pick up something not on my list, maybe forget something that was on my list, linger in front of the jams, strawberry, mixed fruit, organic fruit spread….so many choices, how many tomatoes to get, do I have onions…. should I get more dish soap. Fifteen minutes has turned in 45 by the time I’m in line. 

I’m exhausted.

Maybe I have to return a phone call about the cable bill or make a dental appointment. I try to clump my phone call “errands” together, reducing the stress of making phone calls every day. Each call requires energy. I try to have all of the information I’ll need in front of me before I make the call. The phone means listening carefully to the prompts. Press 1 for..press 2, 3,.4, what is your account number, what is your password? Please hold. By the time I am able to deal with the purpose of my call, I am frustrated and tired.

If I have evening plans, I’ll need to nap. 

An evening event usually means I have a few hours before I run out of stamina. It also means making sure that I’m going somewhere without bright lights, loud music, or engaging in too many conversations.

Simple isn’t simple anymore.  

It is, of course, easier when I’m not judging myself for being slower in doing tasks than I used to be, for being tired, or feeling that I need to explain to others, again, why lights and noise are problematic for me. Judging and guilting take a toll. I’m learning how to pace my days, enjoy what’s around me and focus on what I do have, rather than what has been lost.

I continue to learn more ways to take care of myself and to take care of my brain. 

JoAnne

February Greetings

When I wrote last, I talked about living with traumatic brain injury and a little about the circumstancesthat left me with TBI. 

My TBI is the result of Random Violence. I think it’s important to talk about each idea separately.

Random: I’m a planner My guess is that most people plan their day to a certain extent. What needs to get done; when to buy groceries; what to have for dinner. Ordinary stuff, the stuff we take for granted. I was walking down a street I’d been on many times just thinking about what to have for dinner. I was thinking about eating lamb shanks cooked in a red wine sauce.  when a stranger attacked me. I was a stranger to him too. 

If I’d walked down another street, or the same street at a different time, or so many other scenarios, maybe I’d never know that random, unintentional, arbitrary things just happen and then life can change in a fraction of a second. Plan, I think, are just hopeful sketches; a nod to an unknowable future moment. 

 I didn’t have lamb shanks that night.

Violence: In my life, violence was mostly something I watched on the news, read about in books or talked about with people who had suffered from some form of violence.  I was appalled and heart sick by the destruction of lives and communities due to violence, but I didn’t have visceral knowledge.  And then I was beaten with a hammer, and in my body, I felt, with a terrifying certainty, that I was facing death.

After violence entered me, so did a visceral knowing of brutality and cruelty, 

Violence bores into the brain, and so I stay on alert in case something…an unknown something…happens and since I’m protecting against the unknown, I have to protect against everything.

Violence bores into the muscles, and they become taut from being watchful and from gripping whatever is nearby to brace myself against ?????

Violence bores into relationships because part of me is broken and afraid. I become preoccupied with watchfulness. The protection I wrap around myself is not permeable; it’s a barrier.

After violence entered me, I viscerally understood how violence, brutality, and cruelty, surrounds us. I felt how the workplace is so often riddled with violent acts. Employers or supervisors who treat those others like chattel; coworkers who traffic in gossip. I knew that workplaces could be harsh and absent simple kindness and generosity. Now I realized that these were forms of violence, retaining and confining the spirit and damaging the nervous system

Since violence became part of my life, there have been over 100 mass shootings in the U.S.  I’m ashamed that I can’t remember the locations of each; I can’t remember the names of the people shot by police. The numbers of people who are victims of violence is estimated in the millions each year.

After violence entered me, the hate filled comments of politicians and others. I felt, feel, like a form of violence. Demeaning individuals and dismissing whole communities as worthless, is a form of brutality.

I know I am now part of a huge, mostly invisible, emotionally vulnerable, community of people. I hope that this blog can serve as one forum for telling stories and feeling less isolated. 

I don’t know what your refrigerator is like. Mine too often has food in the back of the shelves that overtime get moldy and smelly. The things on the back shelves need air and light. Feelings anger and isolation also need air and light. 

You are welcome to share your perspective or to contact me. 

Let’s talk again in March.

JoAnne

January 16, 2019 Ten Year Later…

It’s been 10 years since the moment that re-arranged my life; the fraction of a second when I thought, no, at that moment I knew, that I was going to die. I can still feel the terror that took over me, but 10 years have passed and here I am.

Today, though, I don’t want to relive the horror or focus on all of the subsequent struggles. 

Today, I want to celebrate being alive and reflect on what I’ve learned.

I’m not alone

A few years ago, I joined two Facebook groups intended for people with traumatic brain injury (TBI). It took me a long time to decide to join. For years, I didn’t want to admit that there was something I had, that I couldn’t fix. 

I posted a brief summary of what had happened to me. Immediately there were responses from people welcoming me to the site, to this community, and thanking me for sharing my story. I began to feel like this was more than a remote, digital place, disconnected from me. As I read on through the posts, I saw myself: the same questions; similar worries and familiar fears. 

            I’m tired all the time. 

            It’s been 5, 10, 15, years and I’m still tired. Does anyone else feel this way?

            I used to be an avid reader and now it’s hard from me to concentrate. Anyone else feel this way?

            How can I explain to my friends, wife, husband, children…that I can’t do all the things I used to do? I don’t want to  go to dinners or events because I can’t stand  the noise or the crowds. Its’ so hard to talk about this over and over again.

            Does anyone else have ringing sounds in your head, Tinnitus? What does yours sound like? What do you do about it?

           I hit my head on a door. I’m worried. Should I be worried? I have a headache, but I often have headaches. I feel dizzy. My family thinks I focus too much on my TBI. What should I do? 

 

Wow! I felt exhilarated knowing that I wasn’t alone. I’m not weird or strange. I have kindred folks I can connect to anytime. I only need to log in, say what’s on my mind and scores of people will read my words, nod and say:  This is me.

I don’t need to apologize

            Regardless of how a traumatic brain injury happens, its’ effects remain a part of everyday life. People used to ask about my accident and I would snap, “I didn’t have an accident. I was assaulted.” I wanted it known that I did nothing to cause my injury, as if that somehow purified me and made the injury more acceptable. I thought the word “accident” minimized what had happened to me and somehow implied that I bore some responsibility for my injury. I was frequently explaining my state of mind, or apologizing for being tired or forgetting a word or getting lost or being unable to follow directions. When I realized that I had to shape my life in a way that gave me the most tranquility and comfort and that, in fact, my life did depend of my own actions, I stopped apologizing. I stopped apologizing for the evident symptoms TBI; I stopped explaining that my invisible symptoms could also be debilitating; I stopped apologizing for making decisions that I thought were best for me; I stopped apologizing for discussing my injury or declining to talk about it. I stopped apologizing.

I have so much to be grateful for, but I’m not grateful for having a traumatic brain injury

            I’ve written a book. I have many friends. My life is less complicated than it has ever been. I experience incredible love from scores of people. I am so grateful for the bounty of my life. It is true that the assault and injuries have opened up new worlds to me. I’ve learned a great deal about brain science. I am much more cognizant of how trauma alters daily life and impact classroom learning. 

I’ve learned to live with and around something terrible that happened to me. I don’t, though, assign any deeper meaning to what happened.

IT did not enlarge or enhance my life. 

I have come to understand that we each have a great capacity to choose our response to dreadful happenings. Even in the bleakest situation, we have some power of response, and in doing so we define ourselves, rather than being described by an event.

 I am very grateful for this empowering insight.

There is, of course, so much more to say, learn and hear. Please share your own insights and questions. 

I’ll post again in the next week or so.

JoAnne

Welcome!

Welcome to my first blog posting. It seems auspicious, as so much does to me these days, that I’m posting on the winter solstice, the shortest and darkest day of the year in the northern hemisphere. The cycles of the natural environment, and the pulls and tugs of our social environment, are so intertwined with our most powerful and intimate personal experiences. At least this is what I’ve come to understand as I make my way, daily, though a brain injury I can’t see, barely understand, but always feel its’ presence. External seasons, natural and political, are always at play as I maneuver through the reality of having been the victim of sudden, random violence.

Not every part of my story, and I assume yours, is bleak. There are amazing, wonderful people who offer help and healing; there are new communities that I’ve joined and gained new insights about all manner of life events and my love for my family and friends continues to deepen as they share my journey, and I learn more about what it is to walk beside anyone whose life has been upended.

So, let’s walk together through this blog.