Learn to Be an Advocate (like me?)

Brain Injury Advocacy Day, Tuesday, March 20, 2018, Albany, NY

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Intrepid Travelers–NYC Contingent in Albany 2018

Was I going to Albany? Of course I was—no problem! [who was I kidding? It took a ridiculous amount of time, energy, emotion, frustration, etc, etc. you get the picture]

 First step: Preparation
  • Who’s going? When, where, how? [that’s the hardest]
  • Go to lots and lots of planning meetings
  • A ton of group emails back and forth. Too much chatter.
  • Meet in Penn Station. Where? Someone’s bound to get lost.
  • We really need a map that’s just right, perfectly clear.
    [of course I’ll design one. Of course I get sucked in, sidetracked]

Map Penn Stn meeting place

Make appointments
  • Find my representatives’ phone numbers [look online, a little peek at email first and …Two hours lost]
  • “I’m a constituent, it’s Brain Injury Advocacy Day, I came last year.”
  • “I can’t see my Assemblymember? What time’s available?”
  • Write down who, where, when [not on scrap paper!]. File it, email it, don’t lose it!
What to say?
  • Read Brain Injury Assoc. FAQ. Reread it. I still don’t understand what to say. [I’m spacing out. Tired, getting a headache]
  • It should be easy. I can do it [but don’t]
  • Find what I said last year [where is it? Search all over. No dice, and an hour lost]
My first try
  • START. [Oh no, trouble with Word. It’s not letting me make lists!]. STOP
  • Have to write script word for word. [note to self: don’t improvise!]
  • Say: Advocacy Day, personal story, legislation—but no more than 5 mins!

[To my Assemblymember/Senator]

My name is Laurie. I am a constituent. Thank you for meeting with us. We’re from NYC, and are in Albany for Brain Injury Advocacy Day.

I’m stuck.
  • What are we asking for?
  • Have to explain legislation [but I don’t get it!] the TBI Waiver? UAS?
  • Talk about it first or last? Introduce others at beginning or end?
  • What do I say about me?
    [What did I say before? I CAN’T FIND ANYTHING FROM BEFORE!!!]

[Nothing written. I’m distracted, confused, eyes too blurry to see. Stop!]

Hit restart button

It’s Monday, Francesca’s day. She’s my cognitive counselor (I call her my “frontal lobes”). She keeps me focused, organized. So we:

  • Make folders for representatives [What was I putting inside?] They stay empty
  • Francesca: “Step by step. One thing at a time.” We pack my backpack
  • Make list [check]: my script goes in when written, snacks, folders & ??
  • Pick what to wear, lay out on chair. Set alarm for 5:00 am.
  • Make “don’t leave home without” list & tape to door

Francesca leaves. Nap. Lunch.

Time’s running out. Panic’s rising…
  • Run to Staples: print business cards, trim, put in folders, wallet, in backpack
  • Almost forgot cane! Add to list & hang from doorknob.
    [Head spinning, I’m getting distracted, muddled, a sinking feeling. Try to start, don’t]
  • Back to computer, more confused than ever. Back to “My name is Laurie.”
  • Check FAQ again, and emails–too many versions of what to say or do; all the same but all different.
  • Can’t organize my thinking! Still don’t understand what we’re asking for.
  • Worried I won’t have enough sleep, but don’t even have talking points

[Boy am I a mess!]

I have to push through. Write something, anything. I’m exhausted. need to go to bed but still didn’t eat dinner, not even an outline. Questions swirling. I’m in over my head.

FRANTIC!

I can’t do it. Don’t understand, stumped, Paralyzed. And have to eat, now. Is it too late for another nap? Oh! I forgot to take meds. Elizabeth returns my call, to tell me her thing. I start babbling. “I can’t I don’t know what, I’m stuck and no time, no ideas.” She says “it’s OKAY. It’ll be fine. We do whatever we can.”

But I don’t have a clue. I get off phone. Finish eating. Go to computer, once again.

I’m getting angry. Why did they make this FAQ so hard? There are so many words, too many thoughts. Too much for me to absorb in such a short time. I should rewrite everything but just can’t. Don’t know how to say so much and leave time for others. [Note to self: don’t be obsessed—it doesn’t have to be perfect, trust my words].

My whole body is buzzing in over-drive. Now pacing. It’s too late, should be in bed sleeping by now. But I can’t arrive in Albany with nothing to say. Back to computer, start typing, again.

MAD.

Don’t they know how hard it is? That it just seems easy to them? They don’t have a clue. I’M REALLY MAD.
I stare blankly at the screen…

Then, in a panic—a manic panic—I delete what I started. Start from scratch. Let all the craziness spill out, on the edge, holding back sobs [you really can’t read the screen when your weeping, feeling helpless]. Here goes nothing:

Are you wondering why three healthy, well-spoken, and able individuals have made the trip up to Albany from NYC in support of brain injury? It may not be visible, but we’re here because each of us has survived the life-altering trauma of brain injury.

My name is Laurie, and I am a survivor. January 3, 2005 I was struck by a car. Until that moment I was Sr. VP, Creative Director of a major publishing house. But In a split second I became someone else. I can no long read a book. I can no longer work in an office. I can no longer earn a living.  

[SPIT IT OUT. No outline or planning. Whatever pops into my head, It’s ok, I’ll never actually say it. But they do need to hear the truth, and I need to tell them]

You cannot imagine how hard it is to write an email. The hours I spent trying to figure out what to say to you today – and how to say it. The naps I have to take to think clearly. Every day when I wake up I have to put my nose to the grindstone just to do even the most straight-forward tasks. Go to the supermarket? Remember to buy toothpaste? Send a condolence card? It’s in my calendar but I can’t see straight to read it, and usually forget to look.

[I want them to know we are strong. That I am me. I am not my brain injury.]

I want to be energized each morning. To put my nose to the grindstone and accomplish something concrete–to jump into the fray. I remember what it was like. I loved my job, raising my sons, being the family bread-winner. My brain alert, working, imagining, relishing challenges, ideas, and being able to carry them out.

[kept pounding the keyboard]

Of course, I had plenty of failures, stuff to complain about. But there was always something to learn. The best was that I was trusted, appreciated, acknowledged. What I wouldn’t give to be back there again. But I’m not and can’t be.

I may have a brain injury, but that doesn’t mean I’m stupid. If New York State had comprehensive and coordinated supports in place for people like me – like all of us—every New Yorker would benefit. We are a vibrant, talented community whose potential remains untapped. We just need fair and appropriate services.

[Suddenly I realize I want to use this script. DO I DARE? YES!].
So now, I have to make the type bigger, lots of white space, cues, page numbers.
[Here I go again. I’m designing my script! Fussing until it seems just right, wasting time—sidetracked!]

One more thing to write–I saved the hardest part for last. The legislation. Be upfront, direct: “This is what we want you to do.” But how do I explain the legislation [that I still don’t understand]? I’m too wiped out to find the words; so I just copy the Brain Injury Association leave-behind flyer. End it by reminding them:

You represent us – ALL OF US.

Panic subsides. Can breathe again. Check it makes sense and to sleep.

5:00 am: alarm goes off, with 3 hours sleep. Bolt out of bed, panic returns. So sure I’d forget something, I checked 10 times. Finally walked out of apartment, pushed elevator button. ARGHHH—don’t have my phone [or was it keys? wallet?]. Ran back into the apartment. Pandemonium. I’m desperate, tossing around papers, stuff, everything. Oh…

[Either I found it, whatever it was, or realized I had it]. Called the elevator again. Was I late? Is the subway running on time? I think I’m okay. Got there, still hyper, found 5 of us scattered around Penn Station or still in subway (the 6th overslept) & eventually got on the train. I’m running on empty, head buzzing too much to nap. Even with so little sleep I can’t stop gabbing, scrawling stuff down the whole ride, sure I’d forgotten something.

So take a wild guess… the day went well! People listened. Even I didn’t think I sounded boring, or confused, just pretty honest and (probably) mad. When the legislative aide said “how awful,” seemed shocked, or gave me the “poor you” look, I straight out said: “This is not a sob story – don’t feel sorry for me, for us. It’s about civil rights. We all have stories. But we just want the legislation passed.

We did it! In fact, my Senator wanted to meet face-to-face. He was interested. And when I was done, he asked for the printed-out script I read from, written too late the night before and scrawled all over that morning on the train. He wanted my words. Glory hallelujah!

Not finished yet

Thank you letters.
thank you card montageA week later, still recuperating, still can’t think clearly, still not doing what I need to do. False starts, too didactic, just need to say thanks [with what words?] How long, and how panicked will I get before I finally pound something out?
I hope it’s quick. [it wasn’t. I got my Senator’s thank you before I’d finished mine]. All that work has to be worth something. Without a thank you, it won’t.

So, I stopped working on this blog post. I made dinner [already late – my alarm didn’t ring. Why not???] and ate. Then way too tired to start thanking anyone.

Maybe tomorrow?

[At least, it’s a Francesca Monday. I’ll have to ‘fess up. She’ll understand. She’ll help me get back on track. I’m one of the lucky ones.]


PS: we just found out that the day was more successful than we imagined. The budget passed with all we’d asked to vote for (or against). Now that’s success.
Maybe I’ll even do it again next year. You never know.

The stories we tell ourselves. Confabulation?

“It’s not so important that a memory be accurate.
It’s more important that it helps us define ourselves.”  —Martin Conway, PhD[1]


I first heard the word confabulation in the Rusk Brain Injury Day Treatment Program. I thought it was such an odd term. Like manipulating a story about yourself to prove that whatever happened or how you responded, somehow proved your value – determination, strength in the face of adversity.

Is confabulation consciously lying? No. Is it a fabrication? Yes. At the very least, confabulation is one of the stories we tell ourselves. So, what does it mean and how is it connected to TBI? I asked Google (for what it’s worth):

Psychiatric Times: the production of false or erroneous memories without the intent to deceive.
Oxford Dictionary: “imaginary experiences as a compensation for loss of memory.”

And from two expert sources:

Memory loss-1 graphic with gearsBrain Fiction, William Hirstein, PhD (MIT Press, 2004): “Anyone broaching the topic of confabulation is faced immediately with a huge problem: there is no… problem-free definition of ‘confabulation’.”

Remembering, imagining, false memories & personal meanings, Martin Conway, PhD[ii]: Confabulation after frontal lobe injury is an attempt to make sense of the world and help create meaning for the disrupted working self. It’s inherently (and unintentionally) false.

But in fact, all human memory is to a degree false, too—it’s a reconstruction which can never be an exact replica of the experience reality. Our perceptions inevitable include past experiences that help us maintain a coherent narrative of who we are.

This really matters to me because I have a story of my own. One I tell again and again. Is it just filling gaps in my memory? Or a fabricated experience of damaged frontal lobes? Confabulation? Could be. But I’m convinced it’s true. Maybe that’s enough.

My story

January 2005, I was 51 years old. A car hit me as I crossed the street. It was my first TBI (traumatic brain injury). Police and hospital reports determined “no LOC” (loss of consciousness)—but how could they know? They didn’t even see it happen, and if they’d asked me, how would I know? Either way, my recollection is crystal clear—what I heard, saw, and thought from the moment I stepped into the street and heard the squealing brakes:

What a stupid way to go

It has been a really good life—work I loved, two great kids, parents, sister

What a relief the boys are grown up, out of the house now

It’ll be really hard on them all. But they’ll manage

And me? I’ll be dead. Won’t know a thing

Next thing I know I’m lying in the street. Someone runs to get ice for my head.
I look back and see the driver standing by the car door.

Dent in the hood [my shoulder?]
Window shield shattered [my head?]

The firemen cut off my fabulous red coat from Paris, and my red “bucket” bag

After that, a lot of “no memory.”

[END OF STORY]

I truly believe that in the split second before being hit I was aware of what was going on, considered the situation and understood the consequences. And I now believe I’m not afraid of death. (on that last point, only time will tell)

The inner monologue I had with myself is an important part of a bigger story—how I’ve changed since my TBI and what I’ve gained as a result. But I can’t ignore the possibility that I’m confabulating. What if it never really happened? Does that mean everything that followed is based on a lie (even though I never knew I was lying)?

This reminds me of when I started to read Dr. Jill Bolte Taylor’s book, My Stroke of Insight (Viking Penguin, 2005), and saw her TED Talk, one of the 5 most viewed of all time (drjilltaylor.com)   At TED, she tells the audience:

In the course of four hours I watched my brain completely deteriorate in its ability to process all information. [1:54 into TED video]

Taylor then proceeds to take you through the event moment-by-moment in mesmerizing detail. She’s incredibly smart and totally credible, but is it really possible to perceive oneself with such clarity while in the throes of a massive stroke? I’m skeptical. Even before I knew the word confabulation, I wondered if she was confabulating. Whether accurate or not, it’s her story. And it was definitively transformative.

Honestly, my story isn’t so transformative, but it may have kept me strong, empowered to go forward remembering that even under duress I wasn’t afraid; I had the presence of mind to think; to say “good-bye.” My real transformation has been learning to live with brain injury, alter my expectations and accept a self I’d never known.

But you know what? I still tell the story to myself. It may be confabulation, but I am absolutely sure it is true.

Back to Dr. Conway, with a reflection on everyday memory.

All memories are to some degree false…. In fact, the main role of memories lies in generating personal meanings—by no means damaging to the individual, but rather of considerable benefit. In particular, they maintain a coherent, confident, and positive self.[iii]


[1] Conway, M.A., Loveday, C. (2015). “Remembering, imagining, false memories & personal meanings.” Consciousness and Cognition, 33, pp. 574-581. doi: 10.1016/j.concog.2014.12.002. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/3.0/)

[ii] Ibid.

[iii] Ibid.