Feeling Lucky

When I sit and quietly work in my journal, I can be present to the truth.

There are mornings when I forget.  I wake up without my constant struggles–like to walk and to balance–on my mind. But then I move to sit up and swing my legs over the edge of the bed, and the clumsy response of my body is a crushing blow.

All the frustration comes rushing back as I stumble out of the bedroom.

What am I now? Sometimes I can only think of what I am not: I am not the girl who used to get up early on the weekends, walk three miles to Starbucks, then relax with a new novel and my coffee. And I am not the girl who used to run 10 miles a week and loved it. And I am definitely not the girl people would look at and say, “You’re a lot stronger than you look,” when I’d carry a box or move a recliner.

That’s not me any more. Now I am a person who left behind all grace and dignity as I clawed my way out of the black hole that this brain tumor shoved me into. I know I am lucky to be alive; I have gained back many more abilities than the doctors ever thought I would. But sometimes, I get tired of being thankful.

Sometimes, I get tired of everything being an effort. I think of having to make that effort every single day for the rest of my life and I am overwhelmed with exhaustion by the thought. And then I think about how my type of tumor could come back at any time without warning, and the next time it could kill me.

That’s when I realize that being exhausted by life is a privilege.

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.

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.

Journals and Healing

Some of the visual journals I've filled over the years.

“Who is left among you who saw this temple in its former glory? And how do you see it now? Does it not seem like nothing to you in comparison?” Haggai 2:3

I was about two months into what would be six months of physical and occupational therapy after my brain surgery. That’s when I realized that the best way to make progress was to tell my therapists what I wanted and needed.

That was how my work on my visual journals started–really, really, started.  Before, I had created collages and kept art journals off and on, but brain surgery had left my hands so weak and uncoordinated that I could barely write or hold scissors. Creating art seemed out of the question, yet at the same time, it wasn’t a part of my past that I was willing to give up.

So the occupational therapist and I brainstormed a bit. She asked if could I use punches instead of scissors. She suggested exercises I could do to strengthen my hands enough to hold a paintbrush. I was determined to try.

I set myself a goal of creating a collage a week in my art journal, but became so excited that I completed one a night for several nights in  a row. The journal became a tangible way to see progress though out my months of therapy. It was something small that I could keep close, look at, and think, “I made that!”

Were those pages like the artwork I had created before? No, but somehow the restrictions on my creativity slowed me down and forced me to explore new paths–ones I would not have bothered with before because there were so many others to travel, and they all seemed so easy.

When I showed fellow therapy patients my journal, they got it–they understood the pain, frustration, the small triumphs, all without a word said.

One of the pages in the first journal that I worked on while in occupational therapy.