Making a List and Checking it Twice

The call came at 4:43 A.M..  The ringer was off, but even on vibrate, the buzz woke me.  I’ve been having uncharacteristically fitful nights since the temperature plummeted and the landlord turned the steam heat on high.  Even with the window thrown wide it’s like sleeping in a sauna most nights.

Who on earth could be calling me at this hour? I thought, darkly.  In a flash, my annoyance changed to fear,  What if it was an emergency?  I snatched the phone from my bedside and checked: my downstairs neighbor.  Lord, what did he want?  I rolled over and let it go to voicemail. 

A moment later it hit me – what if he were locked out?  My brain still on autopilot, I quickly called him back.  He wasn’t locked out, his roommate’s ceiling was dripping.  He described the location – the same corner as my radiator.  Steam heat, was the culprit, and I tried to tell him this as nicely as I possibly could, after having been woken up at 4:30 in the morning. 

Thoroughly annoyed, I pulled my eye pillow over my face, and tried to drift back to s

leep.  After ten minutes, dreamland slipping further and further from my grasp, I threw the covers off, and lurched to my feet, put my hair up, and headed into the kitchen. 

If I had to be awake at O’-dark-thirty, I might as well make use of my time and bake.  A long-lost friend from kickboxing was coming to town the next, er, that day.  I hadn’t seen him in a decade and I’d promised cookies.  If I got it out of the way now, then maybe I’d be able to get nap in before heading out for the day.

With all of the cognitive functioning and dexterity of a zombie, I baked a batch of Apricot Jammies, set them on the counter to cool, and lumbered back to bed.

Well, at least that’s one thing off the list, I thought, putting a checkmark beside “Cookies for T” before crossing it out.  Satisfied, I pulled the covers over my head and slipped quickly into the dreamless slumber of a power nap.

I live my life by lists.  Every morning I have a list of things to get done, who to email, whom to contact, where I’m supposed to be, what I need to bring.  Sometimes I break the list up into things to do, things I need to buy, and places I need to go.  When I need to get things done there’s always a list.  If I don’t get something done one day, no problem, I just cross it off (with no check) and move it to tomorrow's.

Some people like writing things down on their blackberry, iphone, or computer.  As dependent on my computer as I am, when it comes to lists I’m an old fashioned girl.  There

’s something satisfying about physically crossing off an item.  Thus, I always carrying a notebook and a pen. I’m lost without them.  If I think of new things to do - I add them, if I think of story ideas -I write them down, and having a blank sheet of paper is always handy.

By no means do I live every day in a prescribed, regimented fashion, I thrive on spontaneity, adventure, and living by the seat of my pants - the lists are just reminders.  I don't always bother with them either - when I go on holiday, the lists are left behind.  When someone else is planning the schedule, then I have no need for them, but as a general rule they're helpful, and can even be freeing.  I don’t have to rely on my memory so it releases me from the stress and worry that I may have forgotten something.  I still don’t think I’ve completely transformed into a list person, but they certainly are a great asset in keeping me on point and productive.  

Apricot Jammies

Ingredients:

1 c Butter

1/2 c Brown sugar

2 c Flour

1/2 t Salt

1 t Vanilla

1 t Orange blossom water

Sesame seeds

Apricot jam

Directions:

• Preheat oven to 375 F
• Pour sesame seeds into bowl
• Mix butter, sugar, vanilla, and orange blossom water
• Stir in flour and salt
• Form into balls
• Roll balls in sesame seeds and place on ungreased baking sheet
• Gently press thumb into each ball leaving depression
• Spoon jam into depressions
• Bake 10-12 minutes

Sometimes All You Need is a Little Jumpstart

"Oh yes, I know about initiation problems.  Most days S would be perfectly happy if I let her sleep all day.  Is it that way with you?"  

"No, not really anymore" I told V.  My mind conveniently "misfiling" memory after memory of my starter breaking.   

I am torn as to whether it is a blessing or a curse, but even when I try to think of examples of TBI affecting my life, my mind will frequently bury all but the most ostentatious incidents.  On one hand it is good that I don't spend my time ruminating on these problems.  On the other, those who forget history are doomed to repeat it.  

Admittedly, things have gotten much better since writing, but I cannot call these memories up at will - I still need a reminder.  A reminder like finding myself facing the deficit again.  

I got home Friday evening with just enough time to change and get ready to go out and meet S.  I walked in the door with every intention of going out again, but the instant I sat down it was as if all will had been syphoned from me.  I hadn't seen S in months and we'd finally made a plan to meet up, but when she called the first words out of my mouth were whining about the weather.  After discussing it, we decided to postpone meeting up until late afternoon the next day. I had plans in her neighborhood anyway, it would work out perfectly.

It was cold, but canceling plans at the last minute goes against my entire ideology. (if she'd sounded excited about going I probably would have forced myself.)  And staying home alone on a Friday night?  I didn't cook.  I didn't bake. I didn't write.  I had a dinner of 2 pieces of cold pita and hummus, watched a film I had rented, I'm Not There, and went to bed early.

The next day I woke up around 10.  I didn't want to, but I glanced at the ridiculously long to do list by my bed, and willed myself to the shower.  I couldn't afford to give myself a lazy Saturday I had places to go and things to do:

-Follow up on a letter from the Social Security administration

Go to the library to 

-Return books, films, and get some writing done

-Look up Media Bistro and Toastmasters 

- Research TBI

- Send emails with TBI advice 

- Contact organizations

Buy

- 3 birthday presents

-  Adhesive for my full length mirror (despite the nails, it had fallen)

- Clothes hangers

- Groceries at a vegetarian supermarket in chinatown http://www.vegieworld.com/

Meet

- M for lunch

- S for tea and to give her a holiday present

- J for dinner and a movie

- Y for a dance party in Brooklyn

I showered with the best intentions for a productive day.  When I made it back my room, on the other hand, I saw my futon and all virtuous thoughts evaporated.  I pulled a fresh pair of pajamas (hey, work out clothes can double as pajamas) out of my closet, and fell into bed.  M's call at 11 didn't even wake me.  

When I woke around 12:30, my tummy was voicing its complaints.  I lay there for another hour, unable to move, not reading, not watching television, my mind a blank, until my stomach all but grabbed me by the shoulders, and pushed me into the kitchen.  When I opened the refrigerator door I realized my mistake.  I usually have quick and easy food in my fridge, but I hadn't gone shopping in a while.  I had eaten my last piece of pita bread the night before.  If I wanted to eat, I'd have to go out, order in, or actually prepare something.

I crossed the options off:  going out was out of the question, ordering in required a phone call, not to mention human interaction, and I certainly wasn't up to that, and no way was I going to prepare food.  What could I eat?  Finally made due with a piece of candied ginger, and two spoonfuls of crunchy peanut butter mixed with honey.  Yeah, I know.

When I got back to my room, I sent M a text message apologetically canceling, and went back to laying in bed.  A ship dead in the water, I could not get myself out of bed, I couldn't start anything.  Suddenly my conversation with V came flooding back along with memories of past initiation problems.  None of this helped.  My starter was broken - all I could do was lie there, phone by my side where I had dropped it after sending M the text.

M wrote back at 4:30, hoping I felt better, and minutes later S called to (thankfully) postpone our plans yet again, and I went back to my motivation dead zone.   

An hour later J texted me: "Pick you up at 7?"

Oh.  He was picking me up.  I couldn't weasel my way out using the weather as an excuse.  Not having enough energy, motivation, or drive even to try and think of another excuse, I typed two letters:  "OK"  Fine.  I was going to dinner at 7.

At 6:53 I looked at the clock.  "Oh," I thought to myself, "Now I really have to get ready."  I lurched up, pulled on some clothes, and was in the middle of hunting for my mascara, when J called to tell me he was a few blocks away.  

Thankfully my parents instilled a firm sense of obligation in me, or I wouldn't have been able to pull myself out of bed.  And thank goodness I am dating a boy who has a car and actually drags me out of my apartment, and kick-start me.

Initiation deficits are one of the more insidious of the TBI problems that I face.  It can affect all parts of your life.  Saturday was a good, albeit brief, example of what initiation deficits can do.  It is very odd, often I will want to do something and know that I need to, but won't be able to start the activity myself.  Be it doing laundry (even dropping it off at the laundromat), buying food, looking for a job, starting a new activity (even one I genuinely want to do), leaving for the concert, or whatever it might be.  Though frequently mistaken for it, initiation is not the same thing as procrastination.  In some instances the task just seems overwhelming, and the concept of starting it simply is beyond me.  On other occasions, I know what to do, and how to do it, but I simply can't get started.  

I wish that I could give advice on how to overcome initiation problems once and for all, I would love someone to enlighten me, or the magic fairy to wave her wand and keep me from getting "stuck."  Alas, all I can offer is how I cope.  

As I said, keeping my word, being on time, and reliable is extremely important to me.  Because of this, if a friend asks me to do something, be somewhere, or I have an appointment with them, I do everything in my power not to disappoint, and happily this can override even my problems with initiation.  

If it is not that way already, I would recommend making punctuality and keeping your appointments a priority.  The next step is to talk to your family and friends  about this issue and let them know ways they can help "jump-start" you.  It is almost never a big thing.  As far as starting projects, looking for work, or things of that nature often all it takes is a suggestion, or hearing about something from a new perspective.  For errands, your family or friends can recommend you do them together.  And for events, you can always just go with friends.  For me, at least, all it takes is pulling me out of the stuck place I'm in, and I am up and running.  It can even be hard to stop!

As always, I'd love to hear any questions, comments, or suggestions.  It would be great to hear your stories, and other ideas for coping with initiation problems....

Shoot From the Hip

The easiest place to get lost is in your own head.

I couldn't stop thinking about that poor abused dog from the shelter.  Seeing such abject terror really shook me up.  That dog did not have fear instilled in her by neglect or some thoughtless act.  No her owners calculatingly tortured, tormented, and broke her spirit.  What kind of monster could stoop to abusing an animal like that?  How could anyone torture another creature so cruelly?  

Injury to my frontal lobe heightened my emotions.  Though it has gotten less frequent, intense, and I have learned to somewhat control it, to this day  I am, on occasion, assaulted with raw emotions of unimaginable intensity.   For better or worse, this paired with the suggestibility characteristic of TBI survivors (frequently survivors will behave as emotional mirrors), has turned me into an emotional sponge.  I can be swept away by others' emotions - anger, fear, or even happiness or excitement.  This does however, lead to moments of painfully intense empathy.

On the way to the potluck my mind kept coming back to the image of the poor thing cowering in the corner of her cage.  But before walking in, I resolved not to let anyone else know about it. Even with my diminished social skills, I'm pretty sure crying at a party is not in the best form. 

In the crowded room I swallowed my feelings and made a concerted effort to shove it to the back of my mind.  I plastered a smile on my face, and tried to socialize.  Flitting from group to group I joked, laughed and tried to keep conversation fun and superficial, being careful not to talk about anything that would touch on any real emotion.  

This lasted for a few hours, before I fell into a conversation with A, the hostess.  A and her husband had moved to the City several years ago from Missouri and their dog was not adjusting well.  Inside he was fine, but he was terrified of setting foot outdoors -the city's cacophony was too much for him.  I was telling her about ttouch healing massage, and how it could help with emotional as well as physical problems.  http://www.lindatellingtonjones.com/whyTTouch.shtml 

A was fascinated.  We moved to a nearby sofa and a few minutes later J came and sat down next to us.   "I tried to talk to you, and you completely ignored me.  You didn't even say hi to me or give me a hug!" he said, in a hurt voice.

I'd been oblivious to any of this, but mechanically got up, gave him a hug, and without thinking, returned to my conversation.  A group of us left together at the end of the evening and as we parted ways, me heading west, the others east, J gave me a perfunctory one-armed hug.

Realization slowly dawned on me.  I had been so focused on socializing, and then on a conversation, that I had not picked up on any hints that J wanted to talk.  I may have increased empathy (of sorts) now, but I still struggle with picking up on social cues.  This is especially true at times when I am preoccupied with something else, or am in a stimulating environments. When I am mindful, and thinking about it, I am a compassionate person and a considerate friend.  Unfortunately because of the injury there are times I can be completely oblivious to other people's wishes or feelings, and be callous, cold, or even rude.  I'm not really sure if it is a good or bad thing, but I've reached to the point where I generally realize what I've done after the fact, and almost always feel badly if it's brought to my attention. 

Wracked with guilt for hurting a friend (however unintentionally) I sent J several text messages with no response, and went to bed miserable thinking about that, the abused shelter dog, and all the horrors of the world.  The next day I sent J a long heartfelt email of apology.  Kindly, he immediately wrote back telling me that he knew me better than to think that I would do that on purpose.  Never the less I was sure to outline how situations like that could be avoided:

It is extremely important that you be direct with TBI survivors.  No matter how put-together they look, there are almost certainly going to be glitches.  Something that you think is obvious may completely escape their notice.  

I haven't found a fool proof method of staying on-point in this area just yet.   Though I can pick up on things most of the time, there are a few big pink elephants that lumber past me without so much as catching my eye.   The best advice I can give is to try and avoid overstimulation, get plenty of rest, and talk to your friends and family about the things you struggle with.   It can be extremely frustrating, but with time you will get better and learn more effective coping strategies, and find what works best for you.

Though I may have felt awful about my behavior at the potluck, the coffee cake I brought was a great success.  My godmother gave me  the recipe years ago, and it is unquestionably the best coffee cake I have ever had, and extremely easy to make.  

Cream Cheese Coffee Cake

Ingredients:

1 c Butter

4 Eggs

1 8 oz package Cream Cheese

2 1/4 c Flour

1 1/2 c Sugar

1 1/2 t Baking Powder

1 1/2 t Vanilla

1/2 c Sugar

1 1/2 T coco powder

1 T Cinnamon

1/2 c chopped Pecans

• Combine 1/2 sugar, coco powder and cinnamon and set aside.
• Grease bundt pan and sprinkle with pecans.
• Cream butter, cream cheese, 1 1/2 c sugar, and vanilla until light and fluffy
• Add eggs one at a time beating well after each
• Add flour and baking powder mixing until well blended

• Spoon 1/2 the batter into prepared pan and sprinkle 1/2 the cinnamon, sugar, coco mixture over
• Spoon about 2/3 of remaining batter and sprinkle with remaining cinnamon, sugar coco mixture
• Top with remaining batter and swirl knife throughout to marbleize.

• Bake 60-70 min
• Cool upright in pan for 15 min

Animal Assisted Therapy

It was love at first sight.   I hadn't wanted a dog, my apartment didn't even allow them, but somehow I knew I had to have the little Jack Russell puppy.   

Last night was my first time volunteering as a dog walker with NYC Animal Care and Control. http://www.nycacc.org/contact.htm I wanted to volunteer and miss being around animals, so this seemed ideal.   I wasn't sure what to expect, but I do love animals and am generally good with them, so I wasn't worried.

It was dark before we started walking the dogs, and just to be on the safe side the project leader had the volunteers pair off in teams of two.  I was relieved. We were in the low hundreds - so close to the UES, but so far.   I have no experience with that area, and East Harlem looks pretty sketchy, especially at night.  

My partner D, an energetic Lebanese girl, did not have any experience with large dogs and was a little scared.   I couldn't blame her - I could easily see a large dog overpower the waify girl, who could easily have passed for a model, and run away.  The fact that 90% of the dogs there were pit bulls didn't ease her mind in the slightest.  The team leader suggested that we start out by walking a tan medium-sized pitbull mix who was curled up on her pillow in the far corner of her cage.  I took one glance at the poor thing shrinking back from our gaze; pinned ears, clamped tail and asked if we could walk another dog.  Any other dog.  

The first dog we walked was a puppyish chocolate pit bull with white markings.  Self assured and curious about everything, this dog was a charmer.  We put him back in his cage and asked a petite hispanic Animal Care employee which dog we should walk next.  The wiry woman flashed a smile and immediately suggested we take out the first dog our team leader suggested.  

"But she's so scared," I protested "Are you sure she's safe to take out?" 

The employee reassured me that this dog was gentle - she was just scared of the other dogs, and would be fine once we got her out.  With a sinking feeling, I watched the poor broken thing flinch as the collar slid over her head.   That walk nearly broke my heart - the poor thing struggled against the leash, her ears and tail pinched close to her body.  As soon as we got back the employee realized her mistake - this wreck of a dog had experienced unspeakable abuse and cruelty.  Without intense rehabilitation she wouldn't have a chance at being adopted.

Next we walked Brodie, a friendly-looking Rottweiler-mix who enthusiastically who wagged his feathered tail the entire route.  But the last dog we walked - he was the best.  Pepper was a  black 1 1/2 year old medium-sized lab mix.  He was soft, playful, eager to please, and the first really people-focused dog we'd met that night.  It was Pepper who reminded me of my little Jack Russell - my Klaus.  It was pepper who reminded me of  that wonderful pivotal moment in my recovery.  The day I met Klaus.

Though I had had a good recovery and was on the right track, even years after my brain chemistry was seriously affected.  Just like many survivors, I would go through periods of deepest depression, and indeed despair, and nothing would seem to help.  My diminished social skills, feelings of isolation, and tendency to turn inward only served to exacerbate matters.  Klaus changed all of that - having a being that loved me so completely, who I could love helped immeasurably.  Being miserable around such a happy, loving, snuggley puppy was all but impossible - if I was sad, he would snuggle with me until I was happy again.   

I truly view getting him as a turning point in my recovery.   This is not to say I did not continue to struggle with depression, or that animal therapy is the magical miracle cure, but I definitely think that it is a powerful weapon in the therapy arsenal.  Being able to develop a relationship with an animal is an excellent step towards rebuilding social skills and developing relationships with people, and I am not alone in this view.

The therapeutic, healing, and calming benefits of animal contact are widely acknowledged.  Today many hospitals and assisted living facilities have programs for dogs to visit the patients and residents.  This is a form of Animal Assisted Therapy.   This type of therapy is wonderful for TBI survivors, including encouraging empathy, socialization, decreasing stress, as well as many other psychological and physiological benefits.   http://bettyclooneyfoundation.org/servicesAnimal.html

I recommend getting an animal of your own so that you can develop a special bond.   However, if you are not able to have one, there are always opportunities.   For example, you can always volunteer at animal shelters, participate in Animal Assisted Therapy programs in your area, or play with friends' animals.   As with any type of therapy, this is not the answer for everyone, but in my humble opinion, it can't hurt to try.   

As always, I would love to hear any questions, comments, or stories you have...

the Piper must be paid

Two hours of sleep is not enough for anyone ... for a TBI survivor you'd have to be a complete idiot to do that to yourself.  Yours truly: idiot in question.

Now the thing about pushing through and doing things like this to yourself is that there is a very curious progression.  When the alarm went off at 7:00 a.m. I woke up feeling quite refreshed.... this is the deceptive nature of naps.  I was almost giddy as I bounced out of bed, got ready, and hopped on the train to Queens.   Hard to recognize though it might be, this giddiness is the first stage of sleep deprivation....

A few hours later the false energy started to drain, like sand through an hourglass I clutched frantically at any remnants of vigor I had left, all to no avail.  I quickly excused myself and headed home, fighting to stay awake on the long train ride back.   The walk back from the station seemed to take ages, like a windup toy winding down, each step was slower than the last.  I didn't leave my apartment that night - I barely left my bed.   

The next day was a coin toss.  Even after a long nap and a full 10 hours of sleep, I could feel my body wavering on the verge of illness.  One wrong move and I would get sick.   I plodded through the day's motions half-there, but locked into the inflexible thinking that comes with fatigue I forced myself to meet my commitments.   Throughout service at St. Thomas I felt like a moth battering its wings against a window - I knew it was bad for my health to be there, but I couldn't help myself.  When J asked me to dinner at his parents' that night, I went.  It was a wonderful dinner, and delightful company, but even after my nap I was stretched too thin.  To be on the safe side I should have stayed home.

Inflexible thinking is strange - it is almost as if it takes away your free will and ability to make decisions.   I suppose when I get tired I am a zombie in more than appearance.

Thankfully I did make it through Sunday in one piece.  At the end of the evening J dropped me off at home and I showed him some massage techniques that you can use on yourself.  I demonstrated how to do ttouch, and also showed him some facial lymphatic massage techniques that I learned in volunteering with hospice care.  

The next morning I woke up still feeling a little overtaxed.  Then something compelled me to try the lymphatic massage on myself.  Miraculously this produced almost immediate results. While writing this I stumbled upon an article on lymphatic massage, and low and behold, some of its benefits are helping with fatigue, and boosting the immune system. I highly recommend trying lymphatic massage on your face when you are fatigued or overtaxed.  It is by no means a substitute for sleep, but if you are still worn out after a good night's sleep then trying this cannot hurt.   http://ezinearticles.com/?Lymphatic-Massage---The-Benefits&id=283527

"Through Dangers Untold and Hardships Unnumbered"

The Labyrinth, and all of Jim Henson's movies were childhood favorites of mine.  There is one line in particular hits close to home.  "Through dangers untold, and hardships unnumbered I have fought my way here...."  I often think of it, and believe it is extremely appropriate for life after brain injury.  It can be a constant struggle, to find you way through the labyrinthine medina of life with your new burden of deficits.  Far too often others discount your struggle, not realizing the dangers, landmines, and pitfalls lurking should you stray from the path. 

In my “Art and Arias” entry I recommend keeping your mind stimulated and constantly trying new things.  Though I stand by my words, I feel I must stress that it is a razor thin line survivors must walk between stimulation and overstimulation.  One millimeter to the left and fatigue can hit, burying you under an avalanche of deficits, one millimeter to the right and you will become bored, lose interest, and not reach your full potential.  Doctors and therapists tend to err on the side of safety, I firmly believe that they are right to build a strong foundation, however I am not sure that this is always the best way. 

Though it is not the safest or easiest route, but I would say I am where I am today because I

 pushed myself (maybe too hard) in this fashion.  In riding, my best and most satisfy

ing performances were always on that sliver of area.  It is that feeling that takes your breath away - you are just barely in control of the powerful animal, if something goes wrong then everything can go wrong -but it feels like flying.   It is just that same feeling of pushing yourself until you are just brushing the breaking point, but knowing when to take it back.  Unfortunately patience, perseverance, and frustration rather than than exhilaration, are what survivors have to look forward through the process.  

The old adage “if at first you don’t succeed, try, try again” is at the root of my philosophy.  Build solid a solid foundation and then try, try, and try again until you get it.  Sometimes you will have to leave what you are trying to accomplish and come back to it, but with persistence, the pathways will form.  When you have it adequately, it is imperative that you take a break; step back, take a breath and relax.  Learning will fatigue you faster than anything, be careful to listen to your body and  do not get in a hurry.  Giving yourself and your brain time to rest is possibly the most important part of the process, because this is the time it’s building and solidifying those pathways.  When you are well-rested and ready to go, then on to the next step – you will be amazed – what you once thought was impossible will become second nature.   

I marvel at the brain’s plasticity, it’s ability to grow, reshape, and reform itself, and the more research I do, and the more fascinated I become.  Until recently doctors thought that if a brain cell died, then that was it, but new findings show that new brain cells are constantly forming.  Recovery is a life long process, but this does not have to be a bad thing … you can always make progress.  The most important thing to remember is to never give up hope …  

Ode to a Disco Nap

Friday night did not go according to plan -  finding myself fending of the advances of a Kenyan man at the Notorious BIG movie premier party came a complete a surprise to me.  Especially on an evening I'd been looking forward to singing along with David Bowie and the muppets, but I suppose that's how things work out.  

But back to my Ode to the Disco Nap, in the grand tradition of (butchering) Keats, I will begin:

My eyes ache, and face stretched too-tight with the day's pains

My mind, as though swimming through a vat of taffy

Or voided of all thoughts freezes in the blank emptiness

One minute more and the film of dull sickness will drag me down....

My sincerest apologies, I'm finished.  Though that is truly what the end of along  day and the first hints of fatigue can feel like.  For years and years after the Accident, I thought it would be impossible for me to ever get through the day without nap breaks.  I wasn't sure I'd be able to get a job that didn't allow me to take naps.  I've gotten so much better, I can usually make it through a day (though I've definitely spent some lunch breaks in dreamland) but I wouldn't be able to do half the things I do if it weren't for disco naps.  

As I said, Friday did not go according to plan.  All week I had been looking forward to going to the Labyrinth sing along at the 92Y in Tribeca.  I asked person after person, and no one seemed to like the Labyrinth, or at least not well enough to go to or get excited about a sing-along. Finally on Thursday I took a deep breath and decided to go by myself.  It'd be more fun with friends, but I wasn't about to miss this.  Much to my horror when I tried to buy a ticket they were sold out!  I was crushed.  Hours later P invited me along to a movie premier party, she didn't know what movie, but it sounded fun.  We'd have our own Labyrinth sing along another day!

Friday was a long day, by 6:00 p.m. I was beginning to feel the black hole of fatigue siphoning my energy away.  On the subway ride home I was toying with the idea of toughing it out.  I can , ignore it and break through to my second wind, but that is really not advisable.  However when I saw my beckoning bed I set my alarm for an hour and lay down for one of my favorite things in the world ... a disco nap.  

 

An hour later, fully energized, I bounced up, got dressed and met P in Midtown.  Apparently the movie premier party was for the Notorious BIG movie premier.  We were the only two white people there.  It was interesting, and a fun anecdote to say the least, but when her friend didn't show up for an hour I had no regrets leaving the Kenyan man trying to buy us drinks, for my favorite LES diner, Sidewalk Cafe.  After a few cups of tea we headed down to Eldridge, this cute little LES lounge to meet up with some friends.    I try not to make a habit of getting home at 5 a.m. but it's fun every so once and a while.   

TBI survivors are advised to stick to routine, set schedules, and avoid stresses at all costs.  The first time (I remember) a doctor telling me I needed to start living this vanilla existence, I was shocked, appalled, and thought she was just trying to control my life and keep me from doing anything fun.   After years of experience living with a head injury, and some unfortunate incidents, I have come to see that she had only my best interests in mind.  However, though I agree that it is good to try to stick to a routine, and my body appreciates it when I do, I also think that variety is the spice of life.   Throwing my schedule off, or not getting enough sleep is like playing with Pandora's box of  TBI-related deficits.  I have to walk on eggshells, and be hyperaware of what my body is telling me until my body is back to its routine.   Everything hinges on the naps ... being able to take a nap beforehand and go in well-rested, being able to take naps for a few days after.  Naps have saved my life -both literally and figuratively....

Art and Arias

"Men, zey are so..." The fiery little Frenchwoman lifted her chin, brushing the tip of her nose to indicate snobbery.  "Zey seenk zey are zee world.  Are you married?"

"No, I'm not."  I reply, laughingly holding up my hands to show my unadorned ring fingers, for the twentieth time.  

Eyes shining, the woman reaches her spider-thin hand over the wheelchair arm to take my hand. "You have such beauteeful hands!  Tres jolie -les dents ... les yeux ... cheveux  -- you should be a model!  Are you married?"    

 "Oh, tu est trop gentil.  I think you are the only model here...."

Fairly bursting with energy, time hasn't touched D's unquenchable spirit.   A can-can dancer and model, D's friends told her she was crazy when she moved to New York, she tells me shows me her modeling photos.

"When was this one taken?" I ask, pointing to a pin-up of her modeling a swimsuit.

"Oh three or four years ago," she replies before thinking a moment.  "Maybe less," she says with a smile.  She hasn't lost her sense of humor, but her memory has long sense faded. She has no idea when these pictures were taken, she can't even recall what room is hers.

My first time volunteering with New York Cares  Art and Arias seniors program was a bittersweet evening.  It was wonderful keeping the residents company and getting to spend time with such amazing people - one man had played with Duke Ellington at the Cotton Club, and been best man at Louis Armstrong's wedding, another had been a famous singer, and of course there was my saucy model friend.   It made me feel good to help them draw, choose colors, and create art while listening to music - artistic expression and music truly soothe the soul.  On the other hand, it was heartbreaking to see that so many of them had lost their memory and were left with only dim recollections.   Almost sadder than the tattered long term memories, many residents' short term memory was gone as well.  One woman's daughter visited often, as soon as the daughter left, all memory of the visit vanished.  My heart went out to these people; I had been in their shoes, and given that TBI heightens risk of Alzheimer's, probably would again.   

Memory deficits are frustrating, unsettling, and one of the harder things to pinpoint and talk about.  Primarily because quite often I don't recognize that I have forgotten something, or  don't remember the incident.  Often the glitches are so slight they wouldn't be memorable to anyone, or so I tell myself.  When I do mention something frequently people will discount the memory deficit, telling me, that they have a bad memory too.  The difference is hard to explain.  With the large blanks, it feels like stepped off a precipice,  the seemingly solid memory vanishing under your feet when you least expect it.  These incidents chip away at your confidence, your faith, and your self assurance.  

Thankfully my memory retention has greatly improved.  I have tried to train my memory, repeating facts, focusing on events, and giving situations 100% of my attention.  I have learned to write lists, take notes, and have a "remember ring" system - if there is something I need to remember to do, not only will I write it down, but I will place the ring which I invariably wear on my middle finger to my thumb as a reminder.  

However, even with my tricks, training, and lists, I'm awful with names, not much better with faces. Little, and sometimes gaping holes appear more often than I would care to admit.  The other day a doctor emailed me to arrange a time for us to talk on the phone.  I wrote him back with several times I was available.  Hours later, I realized that the man did not have my phone number; that detail had completely escaped me.  This is an extremely minor incident, but in another situation, had I forgotten to turn the oven or stove off for example (slip-ups which I am sorry to say I have made as recently as last year), the results could have been disastrous.

Thankfully I have gotten, and am continuing to improve in these areas.  I am a firm advocate of keeping your mind stimulated, always learning, trying new things and challenging yourself.  No matter what level you are at there is something for you, and regardless of how advanced you are there is always room for improvement.   Maybe if I learn grow, and keep my ming young, then it will stay sharp, limber, and continue improving....  

http://www.nycares.org/

Art Brut

"Art, in our society, has been so perverted that not only has bad art come to be considered good, but even the very perception of what art really is has been lost. In order to be able to speak about the art of our society, it is, therefore, first of all necessary to distinguish art from counterfeit art." 

-Leo Tolstoy What is Art?

The other night I went to an art opening in Chelsea. Like most art openings, there was wine, there was cheese, there there were some good pieces, there were some mediocre ones, but above all there was order.  Maybe it was the wrong space for it, but though some of the works were very good, they did not strike me with that visceral element that twists your stomach, wrenches your heart, and fills you til you're brimming with emotion while at the same time wringing every feeling out of you.

My mind wandered, as it so often does, to brain injuries.   I first heard of brain injury art, also known as Outsider Art, or Art Brut, in A Three Dog Life, Abigail Thomas' memoir about life after her husband suffered a severe traumatic brain injury.  When Thomas visited the Northeast Center for Special Care the first time she discovered a whole new facet of the art world; art therapy.  The center's hallways, decked with painting after painting, looked more like a gallery than a hospital.  

Thomas' chapter Outsider Art sparked my curiosity, and I began to research Art Therapy and this movement.  Apparently not only does Art Therapy help improve fine motor skills, social interaction, communication, memory, self-esteem, along with a vast array of other benefits, but it is also a highly regarded form of art.  Apparently, Art Brut, raw art, was first named by artist Jean Dubuffet.  Who praised it as being "the real thing, art unpolluted by societies expectations or a culture's constrictions."  (Three Dog Life p 143)

http://brain-injury-art.northeastcenter.com/

To me, Outsider Art seems more honest, and isn't honesty what art aspires to?  I unfortunately never had the opportunity to use Art Therapy in my recovery, but I wish that I had.  The artistic world is one place where disinhibition and heightened emotions could definitely work to the artist's advantage.  I would love to go to an Outsider Art exhibition...

Hit Your Head and Break Your Funny Bone

Knocking on a stranger's door with a pillow got me my first job in New York.  I'd come to the city 4 months earlier to organize a festival, and had just moved in with friends in Brooklyn.  My second evening there, I bought a pillow at a nearby bodega.  I climbed the 5 flight walk-up, hugging the enormous pillow.  Out of breath, I extracted my keys out of my purse and stumbled to the door.  Much to my dismay, when I tried to put my new key in the lock, it met with resistance and the hair-raising scrape of metal-on metal.  I finally got it all the way in, but beyond that it wouldn't budge.  I coaxed it left, jiggled it right -- all to no avail -- it didn't work.  I was locked out.  To make matters worse was I was meeting a friend for dinner in an hour and a half.  

As I wracked my brain for solutions I heard a phone ring  in the neighboring apartment, and a muffled voice answer.  Should I ask my neighbor if I could leave my pillow?  I couldn't take it to dinner with me, and certainly didn't want to leave it in the hallway ... But this is New York, I couldn't just knock on a stranger's door ... it wasn't safe.  I'd heard the stories....  

The next week I started my job as (writing and production) assistant to V, an African American Albino comedian/actor/director.  Before I started that job, I had never been to a stand-up show, but soon I was going them all the time.  I quickly developed the reputation as a terrible audience member - I didn't heckle or anything - I just sat in the crowd with a "make me laugh" deadpan that sucked the humor out of the room.  I found some jokes funny, and I liked most of V’s, I would just feel bad when jokes made fun of people, and crude humor just seemed stupid to me.  The harder people laughed, the more miserable I became.  It felt as if I were the outsider on an inside joke.

I didn’t understand it, I would crack up in one-on-one conversations, but somehow the stand up wasn’t hitting me.  “I only laugh at funny comedians,” I would say.  “You shouldn’t encourage bad comics.”  This from the girl who proclaimed herself a lay-down comic and created disinhibited comedy routines during her stay in the hospital.

Years later, while researching my book, I ran across an article on TBI and humor and it suddenly made sense.  Evidently people with damage to their right frontal lobe (where the worst of my injury occurred) often don’t get certain types of humor.  Our ability to appreciate humor and enjoy a hearty laugh is stored in right hemisphere and chiefly the frontal lobe.  Damage to this part of the brain, as well as tendencies toward concrete thinking, and loss of abstraction contribute to not being able to grasp certain types of humor.  Contrary to the study, physical humor, slapstick, and crude humor were what baffled me, but all brain injuries are different - I'd simply injured a different part.  http://www.neuroskills.com/tbi/pr-humor.shtml

Recovery from TBI is a lifelong process.  Often, after first months of therapy, recovery can slow to a trickle, and it can seem like you are not moving forward at all.  Excitingly, I can use humor as a yardstick to measure recent recovery.  Like creating or recreating any pathways in the brain, the humor ones take work, patience, and persistence.  A few months ago I went to the stand-up filming for Awkward Kings of Comedy (a documentary about black nerd comedians coming out soon) and I almost laughed until I cried. http://www.awkwardkings.com/

Last Saturday my friend C and I went to the Iron Mule Short Comedy Film Festival in TriBeCa, and I laughed and laughed -- the films get better and better.  It was such a fun night; 92Y is a great new venue, the live music before hand was a lot of fun, and the after part was, as always fabulous.    http://www.ironmulenyc.com/index.php

It took a while, but I think my funny bone may have finally healed.  Life is comedy -- it's so much better when you can enjoy it!