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.

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.

Erased Messages

I journal page I worked on recently with some water-soluble graphite pencils. I took it to work yesterday.

Yesterday, I hung up a recent journal page on the bulletin board in my office. I do that sometimes–it gives me a chance to think about a page or technique, and what does or doesn’t work about it, while I eat lunch at my desk. (I gotta get in that art contemplation time whenever I can!)

Both my bulletin boards (there are two) and my white boards (I have three) at work are full. There are to-do reminders, photos of the kids, schedules and calendars, thank you notes, awards and certificates, and the random journal page or two. Until yesterday, there was also the last two notes from co-workers that were left for me when I was out of the office recuperating from my brain surgery.

Those notes–short and simple but generous in spirit–are precious to me. There were so many of them! I will never forget my first day back at work after medical leave when I walked to my office and found that the white board on my door (where I sometimes post my schedule for the day) had been covered with kind messages from friends at work. “We miss you.” “We love you.” “Can’t wait until you’re back.” I left those messages there for years–three years, in fact. They were encouraging reminders that I saw daily, and they helped me get through some difficult days when I felt exhausted and frustrated by my limitations.

And then, I erased them. Three years after I returned to work, I was suddenly tired of being, “the girl who had the brain tumor.” I decided that my co-workers and I would have plenty of ups and downs to share in the times ahead, and I didn’t have to keep those messages as if they were the only kind words that would ever be written to me. (Plus, the were starting to get smudged.) Those messages were written on my heart and mind–I no longer needed to see them to remember them.

There were also notes handwritten on cards or scraps of paper, and these I moved to my bulletin board. Yesterday, however, there was no space left for the journal page I wanted to put up, so I decided it was time to take down the last two messages. I put them in a drawer. Hung up my journal page. Remembered that I needed to be “future-focused.” And tried to have a normal work day until 5.

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.