May is a bittersweet month for me. Four years ago, I was diagnosed with ALS in May. But the month is also ALS Awareness Month--31 days where we embrace hope and share the despair that accompanies a cruel, destructive disease.
On the first weekend this past May, more than 30 friends, siblings and cousins converged on the west side of Manhattan for the annual Walk to Defeat ALS. Our group, called Friends of Nell (FON), raised $6,837 through pure perseverance and some unique tactics. This is the fourth year FON participated, raising a total of $37,000. The funds go toward research and drug development. Presently there is no cure for ALS.
Sometimes called Lou Gehrig's disease, ALS is a rapidly progressive, invariably fatal neurological disease. The disease is characterized by the gradual degeneration and death of motor neurons in the central nervous system, affecting walking, talking and eventually breathing. Most pALS (people with ALS) will die of respiratory failure within three to five years of diagnosis.
Those are the technical terms and statistics of the disease. In heartfelt terms, ALS takes a huge physical, mental and spiritual toll. Nothing can predict the rate of the progressive illness. I wanted to craft a handwritten letter to each of my three sons. When I finally decided what to say, my formerly neat handwriting was contorted and unfamiliar. Three weeks later I couldn't hold a pen. When I left work at Mercyhurst University in Erie, Pennsylvania, for the 2010 summer break, I didn't know I would never work again. Or finish driving the next month.
I had to give up riding horses -- something I'd done since age 4. I want to sing, fall in love again, read poetry aloud, turn the pages of a book, dance. ALS has robbed me of all this.
But during the ALS Walk I realized the extraordinary changes happening in myself and others.
A few years ago at the end of my driving, I dropped Emmet, now 19, at school. Before we rolled to a stop, he quickly took down the handicap placard from the rearview mirror. "I don't want people asking me questions, " he said softly. That same boy is never far from my side or my heart now. He kicks the disease aside as he leans in for a kiss, always, before going out the door.
His older brothers love me day to day in different ways. Brendan, 23, squeezes my arm gruffly every time he passes me. A few years ago, he walked two or three paces behind me when we were out. Now we take in concerts, movies and golf tournaments together. Connor, 21, seems to operate in a parallel universe. He's always been the toughest to pin down. Until our worlds are in alignment, I send him love and prayers.
I've learned who are faithful and who are frightened. When my fears occasionally become too big to drag around, I adopt "act as if." By the time I've put on a smile, warmed up and tamped down any impatience or irritation, I'm ready to take on the daily art of living.
Over the past years I've gotten to say no without apologies. I can decide who I want to be around and I don't need to explain. How freeing! So many love me unconditionally, from my beloved sister, my brothers, my faithful nurses and friends. They give me courage to say yes in a world of no.
For anyone out there who donates to find a cure, thank you! This is about living, taking the next step, beating the odds. Fifteen people are diagnosed with ALS every day. Don't let this disease happen to you or your spouse. Or your neighbor. Or your child. The cure is closer than ever.