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 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.

Before and After: Visual Proof

"Before"--a composition with cuts that now seem too intricate to achieve.

Once I fully realized–and it took a while before I did–how much I had lost after my brain surgery, holding on to the things I still had a grasp on became almost an obsession.

I had lost the ability to keep time to music, to dance, to run, to balance. I could no longer sing (even with the radio), and for almost a year after my surgery, I couldn’t drive a car. Those things were gone forever; after all, it was only after months of intense therapy that I could walk, feed myself, and hold a pen to write. I felt as if I was no longer myself.

So art became important because it was one of the few things from my life “before” that I could still enjoy “after”–it was a part of me that I could hold onto. At least, I hoped I could. I remember crying for at least an hour the first time I tried to use a pair of scissors with my occupational therapist. (What a disaster that was! I would have gotten a neater edge just by tearing the paper.)

It took a long time before I would create a journal page or collage that I wasn’t too embarrassed to show others. When I finally did, it was my way of saying, ” See, some part of the old me is still alive. Here–look at this–I have proof.”

An "after" entry in my journal. As I take a step in a new direction, I can't help but glance back.

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.