At the Intersection of Seeing & Believing

The other day I was rereading my most recent blog post, Socializing, Solitude, Silence. It left me with a nagging doubt: is my self-image as a loner born out by my behavior? I really do prefer solitude to socializing, yet each month I go out of my way to attend the New York City BIANYS Chapter meeting and my local brain injury support group. For some reason or other I’m drawn to these groups despite my inclination to push away. Why the disconnect between what I feel and what I do?

That uncertainty was percolating in the back of my mind as I mulled over this as-yet-unwritten post. As I jotted down ideas, organized my thoughts, and started to write, it all began to gel. What I clearly needed was to unearth the reasons behind that disconnect and set my doubts to rest. In the process I started to explore some deep, even universal feelings.

[Why have I suddenly become so philosophical?]

I believe there is a thread that connects brain injury survivors to each other. It cannot be seen, but is felt – heart felt – when we discover each other. The strands interweave – loss of self, isolation, physical and psychic pain, and the glimpse of mortality. I know we are not special in this regard. All humankind share not one thread but many. Every single person has struggles that echo our own, and no one gets through life unscathed.

But although our challenges may seem similar to there is a difference – a moment in time. The instant brain trauma occurs one’s singular life is sundered in two: a “before” and an “after.” You’re faced with a profoundly unsettling battle between your “selves.”

Why me? Because.

Where have I gone?
To a place most people have never been.

Who am I now? You are you, but different.2017-04-01_final_image Connected by Thread

What can I do? Be patient

When will I return?
There’s no going back.

Brain injury is clearly an existential crisis. But we have to remember that the real crisis is organic, caused by a physical injury to the brain. In that respect, it is no different from any other disability, although it’s often invisible.

In the world outside our world, most people just don’t get it (except some, who do). Consensus has it that seeing is believing, which is a problem when you have an invisible injury. You may “look great” but that doesn’t mean you are “great,” or even okay. Some may think you’re a hypochondriac, lazy, or malingering. Others may tell you to “look on the bright side” (I’m know, I’m lucky. I could be dead), “stop wallowing in self-pity,” or “just get on with life.” If people can’t “see” you, they can’t believe you.

I really just want to be visible; to be seen for who I am: “great” even when I’m not, just because I’m still trying. Maybe that’s why we gather each month away from the outside world: to be seen, believed, understood. As much as they don’t get it, we do, and can accept the weird, annoying, and even funny stuff that comes along with brain injury. That validation is a breath of fresh air. It’s what keeps me showing up and eager to join in. Even though I don’t like socializing, even if I prefer solitude.

These small, self-selecting groups are like a prescription I need to refill every month. Each meeting is an antidote to the risk of believing those who don’t believe me. The more I think about it, the more I realize that there is not a disconnect between what I feel and what I do. The monthly meetings are more than just socializing. They help me stay connected to the reality of brain injury, and keep me on an even keel in the face of that reality.

Being believed, even if you’re invisible, is being seen.


PS: Who gets it? A friend I hadn’t seen for years, long before my TBI. She asked questions (good ones, although I can’t remember what). She listened, without judgment or telling me how to make it better. She still saw “me,” while asking what changed and how. “It sounds so hard,” she said, “of course I can’t really understand, I’m not living it.” But she did understand. She “got it,” just like that. Not everyone needs to see before they can believe.


Illustration (c) 2017 Max Rippon

Packing is a Real Trip with a Brain Injury

[Hello again. I said I’d be back, and here I am.]

Ahh… traveling. The mere thought of going on a trip somewhere (anywhere) always felt like a great adventure but now, not so much. Picturing myself lazing on a beautiful beach or wandering around a new city seems like heaven – irresistible. But my traumatic brain injury has no problem resisting, and no intention of letting me get off easy. Traveling is a pain in the you-know-what. And the worst part? Packing. Just the thought of a suitcase gives me a stomachache.

I just got back from a trip to Mexico City. I was completely psyched about going, found a flight and bought my ticket. Each document I got (like the flight confirmation, destination information, boarding pass, etc.) I’d carefully put down… somewhere (ok, usually on top of a pile of paper).

folderAfter searching for my flight number once too often, a light bulb went off in my head. Bingo! I needed a “TRIP” folder – one place for every important document. But obviously, I needed more than just a folder. I needed to have a Packing Plan. With help, I managed to do just that.

How does someone who’s casual about day-to-day problems turn into an indecisive, anxiety-ridden mess when faced with preparing for a trip? Packing is a killer, but there’s no way around it. Eventually I had to bite the bullet and start.

Basically, my Packing Plan was a step-by-step guide that raised my confidence and lowered my stress. I admit I’m never exactly relaxed setting out on trip, but this time with my plan, when it was time to go I was ready to grab my bags and walk out the door. Making your own plan isn’t easy, but oh man what a difference it makes. So, roll up your sleeves and let’s get to work.

A Packing Plan

First things first – Make a List.
One more time, say it LOUD –

list-angled-first-mentionMake a List!

(and don’t leave home without it

Bottom line: the more time you spend on your list, the less time you’ll spend packing. “So,” you might ask, “What’s the big deal?” or “How do I make a list?” You can copy mine (download it here) or stick around for the nitty gritty how-to. If you do, you’ll have a custom-made list that’s a perfect fit. You’ve got nothing to lose but the time it takes to read this.

Before you can make a list, you need to answer these questions about your trip. It will help you figure out what to bring and how much to pack.

  1. How many days and nights will you be gone?
  2. What’s the weather forecast for your destination?
  3. What clothes will you need for the activities you have planned – the beach, business, fancy dinners, sightseeing, etc?
  4. What do you use daily? Medication, mobility aid (e.g. a cane), phone, baby wipes (huh? Well, only if you’re traveling with a baby, and that’s a whole other blog!)

Once that’s sorted out, we’re on to the List. Use your answers about weather and activities to fine-tune it. If you’re flying, you’ll probably have a checked bag and a carry-on. Here are the basic items you should pack.

SUITCASE

suitcase

Clothes

  • Underwear
  • Socks/tights: at least one a day
  • Shoes: two pairs. No fewer, no more
    unless you must. One pair should be comfy,
    but both should be multi-purpose: not too shoddy, not too fancy
    (unless you’re going to a ball one night!)
  • Tops (shirts, blouses, tees, sweaters)2-shoes
  • Bottoms (pants, skirts
  • Outerwear (jacket, coat)
  • Innerwear (exercise clothes, PJ’s)

Personal Care
toothbrushtoothpaste

  • Toothbrush & toothpaste
  • Deodorant
  • Soap, shampoo
  • Hair brush
  • Hand cream
  • Prescriptions or other medicine (Advil, decongestant, etc.)

CARRY-ON BAG

  • Check airline rules for allowable size and weight, and for items not allowed on board
  • Meds for the whole trip (it’s safer if they stay with you)pills
  • Photo ID & passport (if needed)
  • Personal care items to use in transit
    • Liquids & gels: maximum 3 oz. each
  • Any electronic devices you want with you
    • Phone, computer, earbuds, etc.
    • Don’t forget chargers!

Traveling clothes & shoes

  • Dress for comfort (pockets are good, too)
  • Sweater or jacket
  • Music, puzzles, a book (something fun to do)
  • Snacks

It’s helpful to make a single sheet with all the information you need in transit: reservation number, terminal, departure & arrival times, flight number, destination address & phone number, etc.

From the List – to a box – to the Suitcase

Packing does not have to be your worst nightmare. The trick is to be methodical and check your list at every step. Start early, go slowly, and above all, don’t panic!

First, put a big box on the floor with your list and a pen close by. As you decide what you’re taking, put it in the box and immediately check it off the list. When most items are accounted for (i.e. in the box), pull out your suitcase, organize the items (checking one more time with your list) and you’re ready to pack. Start at least 2-3 days before leaving. box-to-suitcase-with-shirts
Once the suitcase is ready (or almost), you’re ready to pack the carry-on. Follow the same process: from List and box to Carry-On bag. Put all liquids and gels in a a quart-size plastic bag, and don’t forget to set aside the clothes you plan to wear while traveling.

Every bag should be clearly marked with your name and contact info – inside and out.

Keep these items easily accessible for security checks:

  • The bag of liquids & gels
  • All electronics
  • Your “TRIP” folder with ticket, boarding pass, destination, and packing list.

Arrange your transportation to the airport.

Do yourself a favor. Don’t schlep a suitcase up and down subway steps if you can take a bus, and don’t worry about getting a seat on the bus if you can spring for a cab. Whatever makes you less stressed will also make your trip go more smoothly.

It’s the big day. Are you ready to go?

Stop. Take a breath. Make sure you don’t leave home without these:

  • Meds
  • Photo ID/passport
  • Ticket
  • Wallet 
  • Phone & charger
  • Mobility aid (e.g. cane)
  • Last-minute items
  • Your “TRIP” folder

keysGot something to nosh on? a sweater just in case?  is your transportation to the airport all set? Check that you have all your bags in hand and walk out the door – confident and ready to go.

Travel safely, enjoy your trip, and don’t worry – you can always buy anything if you forgot to pack it!

– Laurie