From Chicken Soup for the Soul: Think Positive
Four years ago I flew to New York City for a business trip -- another in an endless series of meetings. I took a taxi from LaGuardia to the National Coffee Association meeting, and after the hours-long affair where I barely said a word, I wheeled my suitcase into the November evening. “You can catch a cab right outside, no problem,” the staffer had assured me.
And I tried, I really did, in my tentative, Central Illinois way. Of course, to the city dwellers, all hurrying home from work, carefully avoiding eye contact, I’m sure it looked like I was waiting for my chauffeur.
First, I stood at the curb and stared, brow furrowed, down the street. As the first taxi approached, I held up a finger, emulating the wave perfected by farmers where I grew up: one finger raised from the steering wheel for a moment, then a quick downcut. That was a more than sufficient salutation. When this was ignored, I tried waving, and even ventured a timid “Taxi!” to no avail. Cabs rushed by, all occupied by businesspeople more important than me. Safe and warm -- doubtless being taken to dinner.
I crossed the street, walking as fast as I could, but still not quickly enough to get all the way across before the light changed. My knee buckled at odd moments, such as in the middle of the street, and I had to pause to get it to lock in again.
I tried my technique on the other side of the street. I was getting cold and the wheeled suitcase and laptop were heavy. It occurred to me that if I sat down on the sidewalk in despair people would just walk around me. The idea of perishing on the streets of New York didn’t appeal to me, so I looked around and spotted a Sheraton with a taxi stand up the street. Desperate, I dragged my suitcase toward the hotel, where a suited gentleman was just emerging from a cab. I threw myself in front of a couple who were approaching the cab, and applied a little New York finesse to the situation: “I need to go to Brooklyn. Can you take me?”
Not waiting for an answer from the cabbie, I collapsed in the back seat and prayed he would put my suitcase in the trunk. He did. As we sped toward Brooklyn, I called my business friends already at the hotel. “I had some trouble catching a cab,” I told them.
I arrived at the hotel, checked in, and rode the elevator upstairs, exhausted. Room 440. I gazed at the floor plan and realized that my room was at the other end of the floor. Facing a long hallway lined with closed doors, I summoned up my remaining strength and pulled my suitcase toward the room, silently cursing my lovely pointed-toe pink shoes that fell off at least five times during the long trek.
I unpacked my meager business wardrobe, set up my laptop on the desk, ordered a sandwich and a glass of wine from room service, and began to answer e-mail.
I had seen my doctor the previous week for an MRI after almost two years of medical postulating at what could possibly be wrong with me. The nurse had called with the results of the MRI -- they hadn’t found any problems -- so I had e-mailed my doctor to ask if I needed to keep an upcoming appointment.
The waiter knocked at my door and deposited my salmon sandwich on a nearby table, waiting solicitously for me to sign the receipt, including a generous tip. I sat back down at my computer, opened up my e-mail and saw, to my surprise, that my doctor has responded almost immediately.
Yes, the MRI had not shown any lesions, her e-mail said, adding a proviso: “Your history of progressive neurological dysfunction and abnormal spinal fluid is compatible with a diagnosis of Primary Progressive MS.”
I sat back in my chair gazing out the window over the dark square facing the hotel. At that moment my life changed forever. Not all at once, but slowly, irrevocably. And it is still changing as this insidious disease slowly destroys the myelin surrounding nerves that enable me to walk, write, and speak.
The diagnosis jolted me into action. Always a voracious reader, my greatest ambition was to write a book. Now, my decreasing mobility made it possible for me to devote hours to writing. Just as many people make big changes when midlife hits, I decided it was now or never.
Fortunately, I had an idea. Since 2003, my husband and I had served as volunteer guides in the Frank Lloyd Wright designed Dana-Thomas House in Springfield, Illinois. The house was completed in 1904, and the infamous Springfield race riots, where two black men were lynched, occurred in 1908. I began to wonder if it would be possible to write a novel centering on the experiences of a young black maid employed at the Dana-Thomas House. The idea captured my imagination and I began researching the riots. Over the next two years, I became progressively more disabled but I could still struggle to the second floor of the Springfield Library to review microfilm copies of old newspapers and books. It didn’t take long to before I was obsessed with telling my protagonist’s story. I continued to work full time, but I spent every evening and weekend at my computer, rewriting the book at least three times. By 2007, I had completed the
book and sent it off with high hopes to almost fifty agents and publishers. No one bit though and by the end of the year I was ready to give up.
I got some encouragement at the right time. At the beginning of 2008, the local newspaper published a generous article about my book, with a tie-in to the commemoration of the race riots. What followed was a year of blessings that would not have occurred if I had not written and self-published my novel, Water and Fire. I experienced things about which every would-be author dreams: a book signing at the Dana-Thomas House, a reading at Abraham Lincoln Presidential Library, presentations to book groups and retiree meetings and an appearance on the local TV station. I even discovered my book on the shelf of the local library.
But sweet as they were, these joys paled in comparison to friendships made and deepened, kind words from co-workers, honest feedback and recommendations from members of my church, and encouragement from the women in my book group. Relatives told me they read the book, boasting about having an author in the family. Total strangers wrote to me with heartfelt comments.
Although I would not recommend MS to anyone, I would not have written the book had I not received the devastating e-mail from my doctor that night in New York. A heartbreaking diagnosis can produce unexpected rewards -- even great joy. I still have MS and there are uncharted roads ahead, but God will watch over me and the days will contain more happiness than pain.
