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.

That Yes or No Question

Years ago, I was introduced to a man through my job that I knew immediately must have been through a grim battle. He was polite, smart, and reserved. Yet his solemn mien told me he had stared the undertaker in the eye and said a firm, resounding, “No.”

I never got to know him well, but others who did told me that he had survived cancer. So that explained it.

Since my brain surgery, I often think of him. I feel that in many ways I have said “no” to limitations and defeats of my own, and I wonder if those who meet me see my scars so obviously, like I saw his.

But, the thing is, I don’t want to be known for saying no. I want people to hear me saying “yes” after I have refused defeat.

Not because I think that, in saying “yes,” I have the better, wiser, more complete answer. There are times when you are so injured in your fight that all you can do is manage to stand your ground and say “no,” and that is the bravest, most powerful, best thing you can do. But “no” leaves little room for whimsy and fun. Any joy must be quiet.

For me, the fight is not over once I have said “no” to a circumstance that would defeat me. It continues until I am able to say “yes” to other things, the next things, better things.

I have found that my enjoyment of my sons, art, and life as a whole has to come from a place of yes. I don’t want to feel as if I can no longer doodle goofy hearts, act silly with my three-year-old, or even (get this) forget the whole brain surgery thing for a few minutes. To do any of that, I have to find a way to say “yes.”

Don’t mistake me–I don’t want to seem as if I have never been through trials and tough experiences. Yes, they have forever changed me. But they cannot define me.

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.

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.

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.

How Can I Forget?

I am forever changed by my brain surgery--but will I always be defined by it?

Just the other day a friend said to me, “You know you’re a walking miracle, right?” I smiled and said, “Of course,” knowing that I have regained much more since my brain surgery than the doctors expected. (That seems like a miracle for sure!)

But in truth, I had forgotten. Yet… how can being a miracle slip my mind? How can I forget to be grateful for being alive?

I had spent the first two years after my surgery high on all the small, constant improvements that I saw in my abilities. I worked hard at my therapies with perseverance and drive. There were days when I would feel depressed or get discouraged, but I never let those times slow me down for long.

For the first two years, the reliable pattern was this: I would work hard and do what I was told by doctors and therapists, and I would be rewarded by gaining back some skill–holding a pen to write, walking without a cane–that the surgery had taken away.

Because of my small successes, I began to feel as if I had some bits of wisdom and words of comfort to offer others facing a difficult situation. “If just one person has their pain eased by talking to me–if I can help just one person feel better–then everything I have gone through is worthwhile.” That’s what I constantly told myself and anyone else who will listen.

The night that Adan, my second son, was born, one of the pastors from my church came to visit me in the hospital. I told him that the only reason that God had healed me was to show the world that anything is possible, that He can do anything, and that miracles still happen. I felt lucky, blessed, honored.

While I still believe that, I realize today that I have come to accept my limitations as my “new normal.” What I once worked so hard for–the ability to stand in the shower or drive to work–have become everyday activities. All that I have accomplished makes it easy to forget how hard I worked and how lucky I am.

But it’s good to be reminded.

I titled this collage, "Memories." It's a piece I created years ago, but was never really happy with. Just the other day I reworked it.