Dreamers, Keep on Dreamin’

Most of you know that my brain surgery was six years ago. And some of you know that before my surgery, I ran about 10 miles a week.

I loved running. It was a chance to be outside and appreciate each season and its own unique beauty. It was a way to be fit. I felt accomplishment when I finished a 5K. And running cleared my head when I needed to turn off my brain for a little while.

So when I was recovering from my surgery and barely able to walk, the question of how soon I could return to running was always on my mind. It was a painful question, but not as painful as the look that would flash across the face of any physical therapist or doctor I put the question to. They would stumble through some non-committal answer, and I would realize that they didn’t want to hurt me with the truth, but didn’t want to lie to me either.

Finally, someone explained to me that my balance might not every be good enough to run again. Asking my body to successfully land on one foot–essential for running!–was asking too much. So, I pretended to drop the subject.

Then, I really did drop it. With work and kids and art, who has time to exercise, let alone run?

But last week I remembered Jill Bolte Taylor saying in her book that she didn’t feel she was completely healed until she could water ski again, 8 years after her stroke. Eight years and she never gave up! (There’s a link to her TED talk on my “More About Brain Injuries” page.)

So since I was out for a walk and no one was looking, I decided to try it. I would see if I could run. If I landed flat on my face, then I’d try again in another few months.

The amazing thing is, I could do it! Now, it’s not a regular run–it’s definitely a brain-surgery-patient run, but it’s more than I have been able to do for six years. My feet leave the ground; I come down on them one at a time. (Yay, me!) And it feels great. Yes, my knees are killing me, but who cares? I ran! Just a couple of yards at a time, but I did it a few times and didn’t fall. Amazing.

Her Bittersweet Resignation

When I first heard that Congresswoman Gabrielle Giffords had decided to resign, I didn’t know what to think. But a few hours later, when I heard Cokie Roberts on NPR explain that, “She attended the anniversary [of the shooting that injured her] event and realized how much a public appearance like that would take out of her,” I wanted to cry.

It was the shock of recognition. I know exactly what it feels like to have come so far in your recovery–only to return to something that had been familiar (almost easy) in the past, and be reminded of how hard it is now. You are forced to realize that although you have come far and worked hard at recovery, you are not your pre-injury self, and you might not ever be. Nothing can be assumed; nothing can be taken for granted.

Sometimes I have felt resentment: “I’ve worked hard at getting better, why can’t I have this? Why can’t I do this? I deserve it as a reward for all I’ve been though.”

Other times I am wise enough to say, “First things first. Take care of yourself. Other things will come.”

Representative Giffords choice seems to me the wise one–the brave one. I wonder if she even felt a bit of the resentment that sometimes comes to me. And although I felt sad at her resignation before, now more than ever I feel she is a hero. Her grace is to be admired. Her recovery is a miracle.

And I know few would disagree with that statement. It just took me a bit longer to get over the shock and realize it.

Something Different

"It didn't come today--again!"

I use my time with my art journals to relax, to be peaceful, to move my hands–because when I do that, it helps my brain work things out. I try new techniques and new art supplies. I try to get better at drawing. I hardly ever illustrate a struggle I am having or a problem I am experiencing, although I know others do and find it very therapeutic. Instead, my journal is a respite from those things.

Until this week, when I did something different. When I sat down at my art journal, all I could think about was Antonio’s calendar.

But I should start at the beginning: a little while ago I made a calendar for him because, as someone on the autism spectrum, he has a bit of trouble understanding what’s past and what’s future. He lives in the moment, and this presents some problems. For example, three days before Christmas, he started sobbing suddenly. Why? Because he thought Christmas had passed and no one had told him, and he had missed it. With a calendar, we can cross off each day and he can be sure there’s nothing he’ll miss. Using it, we arrived at Three Kings Day without tears! (Although whenever I hear someone preaching that we need to live more “in the now,” I still roll my eyes.)

Recently, Antonio wanted to order a special toy online with some of the money he received for Christmas. Now, most adults that you could ask would tell you that they are satisfied with amazon.com’s shipping speed, but they aren’t 6-year-olds with an autism spectrum disorder. The steps of order processing, shipping from the warehouse, and arriving at our home seemed like torture to him. Each day after the order was placed, I arrived home from work to a disappointed son who would moan, “It didn’t come today–again!”

No matter what I said or did, he just didn’t understand why he didn’t have the toy already. I could not reach him–not through compassion or logic–and that was torture to me.

Of course, once the package arrived, all the waiting was forgotten and he was happy. (Maybe there are a few benefits to living in the moment after all.) Me? All I’m left with is a journal page and a question: what do I do differently next time?

A journal page made just to help me relax

Five Years Later

Monday, the 19th, will be the five-year anniversary of my brain surgery.

That means it was just a little less than five years ago that I met a man–a friend of a friend–who quietly listened to my husband and I explain my surgery and then shocked us by sharing that he, too, had once been severely affected by a brain injury. In his case, it was a stroke.

It was shocking to me–just two months since my surgery, sitting in a wheelchair, easily fatigued, and struggling even to talk–because this man seemed completely normal. There was nothing about him that hinted at his past physical struggles or any present limitations. “That’s because it happened fifteen years ago; so don’t worry, fifteen years from now no one will ever guess what you’ve been through. I promise.” he told me.

Do you think I believed him? Of course not. I decided that his remarkable recovery was a special case, a miracle, and that I shouldn’t expect the same. I was also filled with skepticism and I wondered how he could so confidently make such a promise. Who did he think he was, anyway? (And then I immediately felt guilty for thinking that, since he was only trying to be nice and offer encouragement.)

I never had a chance to talk to him again, but I’ve often thought of him. Here I am, just five years later, and if I ever divulge my past surgery to an acquaintance, I am met with the same skepticism and disbelief. “I would have never guessed,” people say or, “But there doesn’t seem to be anything wrong with you.” Of course I still have my limitations–I can never forget or escape them!–but they aren’t so obvious any more.

So, Mr. Terry, let me say that I was wrong to doubt you. You were right; and I hope that, in another ten years, you are even more so.

Where I Hope to Meet a Genius

My corner.

There is a wonderful TED Talk from Elizabeth Gilbert (the author of Eat, Pray, Love) about the nature of genius, inspiration, and artistic talent. In that talk, she explains that the earliest understanding of a “genius” was not of a talented person or artist. Instead, a genius was a spirit, like a god or a muse, that would come to visit the artist and hopefully inspire and inhabit his or her work.

This was news to me, and news I immediately liked. Why? Because when thinking this way, I find that I am no longer solely responsible for what I can or cannot produce artistically. Beautiful journal page? Then my genius must have been around. Awful-looking page? Well, my genius must have been busy somewhere else. Oh, well.

Gilbert expresses, though, that artists have some responsibility: they need to “show up” and be ready to meet their geniuses when they arrive. Luckily, I have a place to do that.

A few months ago my husband refinished an old piece of furniture that was around the house. He made it into an art desk for me; the first one I’ve had since moving to Texas seven years ago. (Yes, I’ve been working at the kitchen table between meals, homework, and board games.) He then helped me re-purpose an old entertainment unit into an art supply cabinet. (No more cases hidden underneath the baker’s rack.)

Now I am finally ready. Here I am. Let’s hope a genius comes along!

Gilbert’s talk is at: http://www.ted.com/talks/lang/eng/elizabeth_gilbert_on_genius.html

The Return of My Handwriting

Yes, the extension list of my co-workers that I keep at my desk is rather… haphazard. The pink Post-it has notes that are years old; the blue was written just a few weeks ago.

This week I was cleaning my desk at work and trying to corral the herd of Post-it Notes that had spread all over it. I started to pile the notes together, and that’s when I noticed my handwriting. I was surprised and elated to see that the names and extensions on notes I had written before my surgery looked just like the ones I had written last week!

Normally, cleaning off my desk is a sober chore, since besides notes, I have many folders I use and re-use, most with handwritten labels from either before my surgery, or from right after it, or from the present. The result is that I have many visual reminders of how the handwriting I worked so hard at–tried so hard to make into a reflection of me and my personality–deteriorated after my surgery.

Back during my days at rehab, I told my occupational therapist about my difficulty writing and, as a result, my handwriting despair. She told me not to worry; it would come back. And every month or so she’d ask, “Is is back yet?” with expectation and hope. But it never happened while I worked with her. It took more time than that.

But now–finally! Four and a half years after my brain surgery and my handwriting looks like its old self! Hooray!

Now, if you think it’s silly or strange for me to care about my handwriting returning to its former look, I don’t blame you. After learning to walk, talk, and feed myself again, I should be content and not worry what my writing looks like. Right?

But sometimes it’s the little things that matter a lot, and I’ve chosen to enjoy this small victory for a while. It makes me hopeful. And happy. And it renews my faith in being patient.

Seeing some great examples of street art recently inspired me to work in my "Walls" notebook again.

I took the photograph in this collage about 8 years ago somewhere arond Hoboken or Jersey City.

Art Lessons From My Sons

From a Saturday morning about a year ago: the boys making art at the kitchen table.

Not long after my brain surgery, I wanted to get back to making collages and working in my art journals. In fact, I wanted to start as soon as I got home from the hospital, but that just wasn’t possible. I had lost too much control and coordination in my hands.

Once I started occupational therapy, however, I found ways to work within my limits. Some were simple strategies: like using punches to cut paper into shapes instead of scissors, which I couldn’t hold. Others were more unexpected and a bit child-like.

That child was my son, Antonio. He was just about two years old at the time, and he loved to mark up any paper he got his hands on with pen, or crayon, or marker. And in his scribbles and scrawls, I found a replacement for the painted backgrounds I could no longer create.

It was a wonderful collaboration: he never complained about how I used his pieces, he was always creating more works for me to use, and it was a wonderful way for us to spend time together. (Teamwork between artists should always be so generous!)

That was four years ago, and now I am able to paint backgrounds, draw simple lines, and even use scissors. But I still use Antonio’s artwork in my journals from time to time, and now his younger brother, Adan, also paints and draws on papers that I use. Both of the boys create with a combination of complete abandon of expectations and raw energy, and I love to add their spontaneity to my work. Here are the real abstract expressionists!

When I was beginning to learn to adjust to my “new self” after the surgery, I was hyper-critical of all I did–or could not do. I compared everything to what or how I did things “before.” Sometimes I still do. It is the boys’ lack of self-criticism while working that reminds me that making art doesn’t have to be something you are good or bad at, it’s just something you do. In so many ways, it is my boys who remind me that today is the day that matters most.

Background from this collage by Antonio, thanks to a long wait at the doctor's office.

Victims of Theft

The Swimming Lesson
by Mary Oliver

Feeling the icy kick, with the endless waves
Reaching around my life,
I moved my arms
And coughed
and in the end, saw land.

Somebody, I suppose,
Remembering the medieval maxim,
Had tossed me in,
Had wanted me to learn to swim,

Not knowing that none of us,
that ever came back
From that long lonely fall and frenzied rising,
Ever learned anything at all about swimming,
but only
How to put off,
One by one,
Dreams and pity,
love and grace,
How to survive in any place.

First I’ll tell you about Phyllis. Her stroke dealt her a harsh blow–she cannot walk without assistance and she has lost the use of one hand. She has also lost self-control–she acts petulant, spoiled, and manipulative; she will throw objects in anger at the slightest perceived insult.

She’s one of the patients I meet at rehab whose life has been forever altered by their brain injury–whether it’s a stroke, accident or surgery, like me. Her former self has been stolen.

John was a trial lawyer. I am not why, but after his stoke he has a terrible stutter. I assume he was once articulate; now his primary therapist tells me she hopes to find him an administrative job in a law office. She has him practice by making copies and collating them. When he drops the stack of papers he just sorted, I notice that the long streak of curses he yells is not once interrupted by his stammer.

Kent is sweet, but cannot focus. In the middle of telling me about the college he took his teenage son to visit, he trails off. “What was I saying?” he asks, ashamed.

Larry tells me about the terrible-tasting meatloaf his wife cooked last week. He ate it without complaining–“It’s the least I can do after all she’s done for me.” Like so many rehab patients, Larry may never work again. His vision is now so bad that he cannot read a line of type or calculate a sum of numbers. (“Oh, I didn’t see that 2 there.”)

The second John is an ex-Marine. He was a helicopter pilot who fought in Desert Storm. He once ran his own company, but he had to sell it after the awful elevator accident that caused his brain injury. He isn’t fit for work any longer.

What lives are we suited for now that we have been broken? I ask myself that constantly, or at least I do when I can stop wondering why these things happened to these innocent people.

How does a thief choose his victims? It cannot be because we are weak. These are some of the strongest people I know.

When we are robbed, we feel exposed and violated.

The Balancing Act

Beauty of the sunlight falling on a tall vase of red and white carnations and green leaves on the altar in the novitiate chapel. … The “simplicity” that would have kept those flowers off the altar is, to my mind, less simple than the simplicity that enjoys them there but does not need them to be there.” –Thomas Merton

"Lifted," a journal page I completed August 18, 2011.

It seems that ever since my brain surgery I am caught between pretending and pity. Years later, I am still trying to find a balance between the two.

On any given day, I am probably pretending that everything is OK and that all the changes to my body and mind–and all the challenges added to each daily task–aren’t too much for me to handle. I let people think that I can take it all in stride.

Of course, it’s hard to keep up that kind of pretending–but what’s the alternative? Pity. As soon as I admit that there are things I cannot do, or even go so far as to confess that there are parts of my previous life that I’ve totally given up, people look at me differently. Even if they try to hide it, I can see the pity start to creep into the corners of their eyes.

Once I’ve been honest, people feel badly for me and wonder what my life must be like. They imagine what it might feel like to be me.

And suddenly, although all I’ve done is explained why I was too slow to catch an elevator or clumsily knocked over a coffee cup, I have reminded them of the brutal truth of how fragile our bodies can be. I have made them think of their own mortality.

So it’s no wonder they distance me with pity. The truth is hard for me to take, too. I’d much rather pretend. For as long as I can.

Journals: By the Numbers

A simple journal page from one of the four journals I'm working in right now.

Some simple stats…

The number of  journals have I completed: 18

For how many years have I kept an art or visual journal?: 14

How many blank journals are in my art cabinet, waiting to be filled?: 6  (How many of those are Moleskines?: 3)

The number of art journals I am working in right now: 4  (That’s the most I’ve ever had going at once!)

The number of novels and memoirs that I started to read last month but put aside for my journals: 3

How many of my completed journals are now lost because I lent them to a friend who proved unworthy of that trust?: 2

The number of journals I currently have on loan to friends: 0