Pictured below Nell Hardy, a person with ALS and Ellen DeGeneres. Nell communicates only by use of an eye gaze communication device.
As my degenerative neuron disease of amyotrophic lateral sclerosis (ALS) marches relentlessly forward, I've had to be a quick study in wheelchair restrictions and regulations. Blah! After a recent journey to California, though, I came back with an attitude: These wheels rock!
I received the trip through the Dream Foundation, a nonprofit organization that grants wishes for adults with life-limiting illnesses. My desire was to watch a taping of "The Ellen DeGeneres Show." Her saucy optimism and humor is the perfect medicine for me.
My nurse-friend Stacie and friend Vicky began the process in April. After a flurry of paperwork, phone calls and months of waiting, my dream began to unfurl. We traveled to Cleveland, where I had to relinquish my wheelchair and attached computer -- my arms, legs and voice. I can no longer speak after undergoing a tracheostomy in January. I communicate solely through my computer, where the cursor is moved by my eyes.
My wheelchair, worth a small car, was chucked beneath the plane while I was wheeled on with a chair designed to fit the narrow plane aisles. I silently blessed my 100-pound frame as airplane employees strapped me on to a seat barely a foot wide.
The next hurdle was overcoming the contour of the seat. I can no longer hold my head upright and faced a four-hour flight with my head slumped forward. Enter the ultimate, invaluable fashion accessory: a scarf. We commandeered one, lashed my head to the back of the seat and were California-bound.
We gathered my sister Caroline and our rental van, decompressed, and slid into Los Angeles, second in size only to New York City. Our hotel in nearby Burbank was lush and inviting, even giving us an upgrade. I noticed again the way all events were slotting neatly into pace.
We relaxed and unwound, looking at the next day and taking stock of the energies needed for a day of play.
The next morning, we headed to Venice Beach, one of more than 100 beaches along the California coast. After a leisurely seafood lunch of red snapper, sole and lobster, we headed north to Santa Monica.
We wove in and out of the shops, picking up T-shirts and presents. And I realized, with startling clarity, I needed to give up any illusion of control. Other than an occasional glance left or right, I couldn't direct the three women with me. I can't control the progression of my disease. The only thing I could change was my attitude. What a revelation!
I shifted softly in my chair where I spend two-thirds of every day and took a full breath of Pacific air. I began to catch people smiling at me. I noticed the purple ocean mist rising off the water at the edge of nightfall. It was a dreamlike sequence of events and a glorious freedom.
The next day, we were at Warner Brothers by 2:30 p.m., resplendent in new outfits and gripping our VIP tickets. A wheelchair usually warrants some privileges, one of which is immediate attention. Ellen's peeps didn't let us down. They deftly moved us from the initial holding area in a parking lot through two more waiting rooms until we spilled into Stage 1, the taping studio. My wheelchair was first in line. I couldn't have ordered a better dream.
At this point, 30 minutes before taping, the studio was controlled chaos. Ellen's female employees were thin, young, tall, blond, tanned. The requisite rope bracelet adorned most wrists. Many charged up and down the aisle stairs, shifting seats and answering questions.
With the help of placards and grand gestures, a gentleman employee was solely in charge of whipping the audience into a cheering frenzy, then silencing them in seconds. By the time Ellen made her way to the stage entrance, the audience was lying in wait. We erupted when Ellen came into view.
I was in the handicapped section -- barely seven or eight strides from the chair that she dances into five days a week. To see the same set that I usually view from my living room was indeed a dreamy experience. And we even lucked into an impromptu question-and-answer session with the daytime television star.
While at least seven cameras clicked and whirled around each other in a metallic tango, Ellen threw 10 questions into the audience. Stacie, my friend and nurse, grew more animated with each question while my sister and Vicky pumped fists and hooted, pointing with expansive gestures toward Stacie. It's not hard to guess who got to ask the 10th and final question.
Stacie introduced me, explaining to Ellen that I use her show as a tool to stay positive and optimistic. "What do you use," asked Stacie, "to stay upbeat?"
"People like Nell," Ellen promptly responded, to the delight of her audience. I wanted to jump up, shout and cry, none of which I could do. She went on to say it was a privilege to be in a profession where she met courageous, disabled individuals.
Maybe my disability is a blessing rather than a burden. Whatever happens, I know Ellen is in my corner.
NELL HARDY lives in Fairview and enjoys reading, writing and raising her three sons (firstname.lastname@example.org).