Be Here. Right Now. Sort Of

March 9, 2010 at 11:48 pm (Uncategorized)

Please, please, please…God. Please, if you make it so that I don’t have lymphoma, so that I can live and be with Andrew as he grows up, please…I will really pay attention to my life. I will appreciate all the gifts you have given me. I will use my abilities as a writer to create something meaningful. I will prove that I am worth this second chance. I will count my blessings, work hard, and not forget how precious my life is right now. I will stop waiting for the next big trip, the next adventure, the next anything to love my life. Please, please, please.

This is what I thought when I drove from Billings to Helena in April, 2004. I had an appointment with a pulmonologist to determine whether I had lymphoma. I was making the trip with only my three-month old baby boy, Andrew, as a companion. My husband had just started a new job that week and couldn’t come with me. Andrew slept for most of the four-hour trip, so I spent the time watching the rugged landscape flash by the car windows and pleading with an unnamed higher presence to spare my life. I was being melodramatic. But I was certain that something was wrong with me and that my life was indeed threatened. I was thirty-three years old.

I don’t think I’m the only one who has experienced intense clarity because of a crisis. That day, every color looked ultra-saturated; the light was brighter and cleaner; I could smell the warmth of Andrew’s skin melding with the sugary aroma of baby shampoo; my own heart pulsed loudly in my ears, and I thought of the magnificence of my body breathing and living. I felt like I was truly seeing my surroundings for the first time. The prospect of losing this world made me take notice of its every detail. If only I could pass through this ordeal unscathed, I pledged, I would not take for granted the wonder of the sun shining through Andrew’s blond curls.

It turned out that I didn’t have lymphoma. As you all know, I was diagnosed instead with sarcoidosis. After the biopsy that determined this, I awoke from the anesthesia feeling so blessed to have been given life at all that I was joyful even before I learned the results of the procedure. This sense of fortune stayed with me. I kept my whispered frantic resolution to appreciate the abundance of goodness in my life—a healthy and happy baby; a smart and kind husband; families that are loving and helpful; friends that excite my mind and make my world better; a house that reflects our personality and is spacious enough for us to be untidy; work that I love; living in a beautiful place; having enough money to meet our needs; books to read; music to enjoy; hiking trails literally out our back door; once more living in a climate of four distinct seasons; and on and on. Once I started to take note of all I had, I almost couldn’t stop accumulating items to add to my mental gratitude list. I found myself appreciating pens and paper (as I thought of the children Jay and I had met in Cambodia who had begged us for a pencil), the luxury of having a washer and drier in my house, the decadence of chocolate, my morning ritual of strong tea and milk.

And then, I stopped. It didn’t happen all at once. I didn’t decide to toss off my sense of gratitude in one afternoon. But I gradually paid less and less attention to the hundreds of miracles that occur every day and the beauty that exists in the most unexpected details. I began again to take for granted my heart’s steady beat and the improbability of life. I counted on the next day and the one after that. I pushed the thought of dying into the recesses of my mind. Someday, sure, I would die, but that was a long time away. No need to worry about that now.

As my sarcoidosis has proved to be difficult and potentially life-threatening in its own right, I have had many more opportunities to re-whisper my case for life to the universe’s ruler. When the doctors found sarcoidosis in my heart and told me frightening worst-case scenarios, I lurched from the exam room and hurried to the bathroom, feeling as if I might be sick. I closed my eyes and begged for more time in my body on this earth, as my stomach settled itself amid the cool porcelain quiet. And recently, when I was hospitalized with neurosarcoidosis and listened to my doctor warn me about the potential for massive strokes and terrible seizures, I tuned out his words and thought instead of everything I want to accomplish in my life and how I hoped to have time to do it. But even with the too-frequent mortality checks, I can’t seem to maintain an ongoing feeling of gratitude.

Being chronically ill has certainly made me more mindful of all that I have. Sarcoidosis has taught me to appreciate my life, my opportunities, and my amazing luck at having Jay and Andrew with me in this world. I wouldn’t have signed up for getting sick if I had a choice, but having the disease has made me a better person. Before I got sick, I was inordinately consumed with abstract goals, with how my life looked to others, and with what I needed to make my life better. I wasn’t bad, but I was self-absorbed. By being so intent on me, I missed a great deal of what went on around me. As I hopped from accomplishment to achievement to planned experience, I sometimes didn’t actually enjoy or fully take in what I was doing. Too often, I completed some project or trip with the sense of being able to now check it off some list I had written onto my soul.

But even now, I have to remind myself constantly to be grateful for health insurance and morning tea, for Jay and Andrew’s love, for the steady friendship I have with my mother. I also struggle to stay “in the moment.” I do mindfulness exercises like meditation some days, and this helps me unwind into the very moment I am fortunate to inhabit. But it does not come easily to me. I quite often catch myself living in tomorrow or next week (or last week, for that matter). Thoughts like “I’ll be able to write my book when…;” “I’ll spend more time with Andrew when…;” “I’ll have a long lunch with Molly when…;” “I’ll snuggle next to Jay and tell him about the book I just finished when…” flit through my mind like gnats on a summer day. I catch myself and rethink what I’ve just delayed. Better to play with Andrew today, work on my book for a few minutes today, schedule a meeting with Molly today, and find Jay right now. Now is all I have. You would think that after so many doctors have told me how precarious my existence is that I would remember this truth. But I don’t.

Maybe I’m letting myself off the hook when I think that it is actually a good sign that I have to work hard not to put off my life until later. It proves that my spirit is resilient and that I am not cowering in fear of losing tomorrow. My body has taken a beating from this pernicious disease and from the equally pernicious drugs I take to treat it. But my heart keeps on ticking, my brain keeps sending commands, and I keep on living. After nearly two years of getting chemotherapy every other week, I still get myself out of bed when the worst of it is over and get back to loving Jay, mothering Andrew, seeing my friends, talking to my mom, and writing when I can.

It is a fine line, a balancing act, this effort to be aware of my life’s finitude while still living fully. There is a Hasidic teaching that every person should carry two pieces of paper—one for each pocket. On one write, “I am nothing but dust and ashes,” and on the other, “The world was created for me.” The reasoning is that by grappling with these two opposing truths, we can find the proper balance. My effort to see with the clarity brought by a life-threatening event, while still living as if and believing I am not in danger is somewhat akin to carrying the two strips of paper. But in my version, I would write, “Exist only now” on one and “Plan for tomorrow” on the other.

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