Around Christmas time of last year, I bought snowshoes. Significance: I could never enjoy winter sports when I was sick. 2009 was my first winter as a healthy and strong ostomate, with enough blood in my body to have pink fingernails instead of purple-blue, enough energy to trek through snowy mountains, enough fat on my bones to retain a little heat. Of course, winter of 2009 was also one that lacked snow, so I didn’t end up doing much snowshoeing, but I felt happy every time I saw my snowshoes up on the shelf.
As March approached, I grew emotional. I was approaching my one-year anniversary of surgery, and something about that brought back lots of memories. It seemed several times a day I would cry, triggered by small moments. The fears I felt prior to surgery were fresh. The miracle of a whole year passing by in a joyous flash was overwhelming. I cried as much from gratitude and joy as from memories of pain and fear. How was it possible that a year had passed? That I had gone from 100 pounds to almost 140 pounds? That I had gone from a bedridden, anemic, incontinent life, to one in which I was doing kung fu, camping, traveling, drinking coffee, eating pizza, etc.? I decided to start my blog, Life With A Pouch, in an impulsive moment one Saturday evening. With little planning or work, I went to WordPress, established the blog, and started writing. It had not been my intention to write six days a week initially, but I felt compelled each morning to write, until it just became a habit. With each entry, I was able to reflect on then and now, sickness and health, limits and freedom. And then I began receiving comments from others out there, and for the first time I felt a real connection to others who had experienced or were experiencing chronic illness and surgery. I began to realize that maybe, in however small a way, I might be able to help another person just by sharing my story, that maybe I could alleviate another’s fears by telling of the joy of my new life. It was the first time I really felt like I had done anything of significance for a stranger. And it was particularly rewarding for me because, as a sick person, I had given up on the idea that I could contribute to society in any way. That was for other people. I would just be on the sidelines, watching. Now, as a healthy person, I was able to contribute again. I am not suggesting that my blog has saved anyone’s life or anything, but I am happy if I can just bring a little sunshine, a little spark of hope, to someone out there.
In June, my husband and I celebrated our tenth anniversary. I was first diagnosed around the time that we got engaged, about two years before we got married. So essentially for all but the first few months of our twelve-year relationship, I had been sick. Until surgery. As we celebrated our tenth, it felt like we had been given a new life together. We could fall in love all over. We decided to go to the Telluride Bluegrass Festival, something that we had previously talked about doing but had never done due to my illness. We spent a week camping in the mountains, listening to music, making friends, and yes, even partying a little. It was delightful to be able to enjoy a beer or a glass of wine and not feel like my guts were exploding. Absolutely delightful. And for the first time, I made new friends as a healthy person. In most cases, my previous illness didn’t even come up. I actually had things to talk about again, because I was out living life again.
Over the summer, my husband and I went hiking in the mountains, and it was a new experience to set out and make it to the end of the trail. No more dragging a mile or two in and having to turn around, nearly dead by the time I returned to the car. The new me was going all the way to the top.
In September I went to China and Tibet with my in-laws, sans husband. Yep, I’m close to them. We had a fantastic time. I trekked a four-mile rugged length of the Great Wall, went to the Beijing Opera, and took a rickshaw ride through the narrow corridors of an old hutong. I was worried about having to use the bathroom, but it turns out that a couple of Immodium go a long way, and if they don’t go long enough, a sense of humor can take care of the rest. In Tibet, I was profoundly moved by the beauty of the land, and the hardships of the people. I was angry when I saw groups of Chinese soldiers at every turn, fully armed with machine guns, as Tibetan people thumbed their prayer beads and circumambulated their temples. I was thrilled by the high mountain passes and the startlingly beautiful lakes at 15 and 16000 feet. I was struck by the irony of nomads out on the high plains with little black tents that they’ve used for thousands of years, with huge blue trucks parked next to their tents that they now use to move about. I was so grateful that I had a new life, that I could be visiting a place like the Potala Palace. I never thought I would travel again, and here I was, on top of the world.
When I returned from China and Tibet, I knew that it was time to knuckle down and get ready for my GREs. 2009 was the year I decided to pursue a career, something I had completely given up on as a sick person. I decided that I wanted to go back to graduate school and perhaps become a professor. I had been reading and preparing all year, but this fall it was time to get serious. I would get up at 5 or 6 in the morning and study for my GREs, wondering if I could get my score high enough to be at all competitive for some of the best schools in the country. I was really struggling, getting terrible scores on some of my practice tests, and at one point I was even thinking that I should give up on graduate school. But two weeks before my test, something clicked. Suddenly I was getting very good scores on my practice tests and I began to get hopeful. Then the Saturday arrived, and it was a beautiful, sunny Colorado autumn day. I got up early and reviewed a little bit, but then decided it was time to close the books and just focus on relaxing. As I was driving to my test, I blasted Ani Difranco and sang as loud as I could, trying to get my energy and confidence up. The sun shone through the front window, and suddenly I was crying. No, no, no, I thought. Now is not the time to get emotional. I can’t really explain what I was feeling. It was a sense of impending change. I didn’t know how I would do on my test, or if and where I would get accepted to school, but I felt an intense assurance that I would get in somewhere, and my life would be taking a new turn. Sickness was past, and my life would continue. I went into the test center, and as I waited, I knew that I needed to calm my nerves. I closed my eyes, and imagined that I was an accomplished dancer. I imagined the choreography of my dance, and went through all of the movements. I imagined what it would feel like to move my body that way. Then it was time. I took my test, and when I was done, the computer announced my score: a perfect score on my verbal, a near-perfect score on my math. I trembled. I kept staring at the numbers, blinking, expecting it to be a mistake. But it wasn’t. I walked out of the center in a daze, back into the sunshine. I laughed. I danced. And you guessed it, I cried.
Around this time, I also took up piano lessons. Not that I had time to indulge in a new hobby. Besides the GREs, I was reading enough literature in my intended field of study that I was practically giving myself a masters degree as I prepared to write statements of purpose for each of my graduate school applications. And I was working full time, and going to kung fu in the evenings. But I love the piano, and one day I realized that a new music school had opened up only three miles away. I signed up. It has been so much fun. I love that when I’m practicing piano, there is no room left in my brain to think about anything. It takes up al of the space in my head just to get my right hand and my left hand to operate independently. And, as the months pass, I can feel myself improving. I feel my fingers flying through Le CouCou by Louis-Claude Daquin, and I feel happy. Unfortunately, I have terrible performance anxiety and can’t even play it for my husband or my own mother without trembling and shaking and making lots of mistakes. But when I’m by myself, I love the sound of the piano, and the feeling of my fingers moving over the keys.
And now, Christmas has come and gone. 2009 is coming to an end. Yesterday I completed and submitted my remaining graduate school applications. I can no longer improve them or make them worse. Today is the first Sunday in a long time that I am not working on graduate school applications, and I’m not working (although my boss did manage to get me to work a full day yesterday!), and there is simply nothing I have to do. I have a backload of magazines I will page through, my National Geographics and Scientific Americans and Science News and Harpers and Smithsonians and Discovers and Atlantics that have piled up in the last couple of months. Maybe I will read a novel in the next week, before I turn my attention to my next set of goals. In 2010, I will find out if/where I’ve been accepted, my husband and I will make a decision about where to go and what to do, and life will take off. Assuming that I will begin school possibly in August or September, there are some major things I want to accomplish first. I would like to become at least reading-fluent in German, Italian, and Spanish. I want to work out a lot and add in some yoga to my kung fu workouts so that I maintain flexibility. I want to complete the historical fiction novel I’m working on. And I have a few other writing projects that I would like to complete, because I know I will have no time for them as a full-time graduate student.
I am open to whatever 2010 brings, as long as it is wonderful.
I hope that those who are sick will regain their health, one way or another. And I hope that those who are healthy will embrace the world like never before. There is no time like now! Let’s live!