December 2, 2003
Beth Rothstein Ambler
Real Living with Multiple Sclerosis
The friendly skies become a little friendlier.
My husband Chuck was seeing me off at the airport, and was doing his normal obsessive worrying. I was going to Colorado to visit Chuck's older brother, Tom, whom I hadn't seen for more than 5 years. My life had changed drastically since then, but for this trip, my plan was to leave a smothering (but loving) husband and my disease far behind. I knew that the second I got on that plane I was having a mimosa for breakfast.
I have MS and one of the symptoms that I live with is overwhelming fatigue. A long flight, combined with the time difference from New Jersey to Colorado, was going to exhaust me.
We began our normal travel game of picking out the passengers that I hoped wouldn't be seated next to me. Topping my list are babies-extra large men are on it, too. An unspoken battle would ensue for the armrest.
I noticed a nun sitting alone and waiting to board the plane. She was dressed in full habit and looked old and frail. She looked as if a heavy wind would snap her in two. I saw my husband's face light up at the prospect of her being my plane companion.
"Don't even think about it...or wish it. I'll kill you!" I teased.
I know myself. I was afraid that all sorts of inappropriate statements would hurl out of my mouth. I have no experience with nuns; suddenly, even screaming children seemed preferable.
Chuck's eyes began twinkling, convinced his prayers had been answered. There was someone on the plane that he'd trust to look after me.
The nun boarded first; she walked slowly, as if each step caused her pain. Naturally, I ended up with the aisle seat next to her. Silently cursing my husband, I thought, "Great.. .just great, hours seated next to a 100-year-old nun. No mimosas for me!" The only bright spot was that I knew I'd be able to rest midtrip, without a bored passenger attempting to make conversation. Nuns read Bibles all day, right?
I watched as she placed a hideous piece of carry-on luggage on her lap. It was a lime green bowling ball bag, and looked to be as old as she was. She smiled and introduced her self as Sister Mary Agnes. I offered to help put the "valise" under the seat.
"Oh no.. .1 can't let this out of my sight. It's for the children." I smiled and assured her that I would keep an eye on it.
Her warm smile tricked me into conversation, and I started chatting about my trip to Colorado. I spoke excitedly about seeing my husband's brother. Sensing something more, she asked what was worrying me. I explained that my brother-in-law hadn't seen me since I was diagnosed with MS, and I feared his reaction to seeing my limitations. I'd had 5 years to deal with my MS, yet this visit was only for 5 days.
She continued asking probing questions about my illness, her face holding a look of compassion. I told her about waking up blind one day, and paralyzed on one side of my body on another. Her expression looked as if she was physically trying to absorb some of the anguish with which I lived. She asked about my religious beliefs, causing me to pause. Stalling, I asked, "You're a nun, right? But I thought you couldn't leave the convent." This was the stupid question of the day.
"Actually I'm a sister; cloistered nuns don't leave the convent, while sisters do." Mortally embarrassed, I glanced at the emergency exit. I felt my cheeks burning as she said that it was a common mistake.
Lunch arrived and I saw her gnarled arthritic hands for the first time. She struggled with the plastic wrapper on the utensils. I took them from her, and began to cut her mystery lunch into bitesize pieces.
The plane began to shake from the turbulence, and the captain lit the seat belt sign. I informed the sister I would accompany her to the restroom. I worried the turbulence would knock her down.
The trip to the restroom took 15 minutes walking at a snail's pace. Using her forearms, she clutched her "valise" to her bosom. I walked behind her, grasping her elbows, concerned for the pain in her hands.
I spent the remainder of the trip listening to fascinating stories from the nun. She had been raising money for the children of a third-world country. I offered her a donation for "her children." Happily, she asked me to get her valise. I gasped as she opened it. Inside was a mound of crumpled bills.
"Sister, that's not safe. Someone could steal it, or hurt you to get it!"
"Don't be silly, who would hurt a sister?"
I hoped she never had to learn the answer to that question.
"Just the same, I'll walk you to your cab at the airport," I said.
Saying our good-byes, I asked, "Sister, clearly you're in so much pain, why do you keep traveling?"
"You know that wonderful lunch God provided for us today?"
"Okay," I answered as I bit the inside of my cheek to keep from grinning.
"Without your help, I would not have been able to eat. You know, God sent you for me. You were my guardian angel. Without my help, my children will not eat. As long as God allows me breath, I'll feed my children. I'll be praying for you, Beth."
Then Sister Mary Agnes asked me what I did with my time now. Confused, I repeated that I had MS. That usually is enough of an answer, but not for her. Expecting more, I began improvising. I told her about the articles I wrote for Real Living with Multiple Sclerosis, the National Multiple Sclerosis Society, and my local newspaper after first being diagnosed. At first I just wrote for meit helped me to deal with the changes in my life and still keep a smile on my face.
I found myself speaking proudly of the fan mail and e-mail that I'd received from my published articles. I left out the part that I'd stopped writing. After my first 2 years, and still no cure, I no longer wanted to be a member of that club.
Her face lit up with joy as she told me that I had a God-given talent and that I should "treasure it and continue to use it to help others."
I felt a little ashamed as I watched her struggle into her cab, but also blissful. Since my diagnosis, that was the first time I'd been the caregiver instead of the one receiving care. I wanted to tell her that she had it backwards, but who would correct a sister? Besides, I was basking in the possible direct connection to God.
Using my God-given talent
I had a wonderful time visiting my brother-in-law, until he posed the same question as the sister. This time I just shrugged my shoulders and looked at him blankly.
"Beth, Chuck and I are worried about you," he said. "You need to stop living your life as if you're waiting. You're waiting to get better, or worse, for a cure. In the meantime, you've put your life on pause. Get involved, find what works for you, and make it fit into your life now."
In wake of my conversation with Sister Mary Agnes, I had no response. Tom and my husband were right; I was waiting, doing nothing while the years passed by.
Today, I proudly spend my time writing about living with an incurable disease. all it takes is a stamp, writing for 3 hours a day, and according to Sister Mary Agnes, a God-given talent.
Although it's a daily struggle, with today's advances in medicine, MS is a very manageable disease. My neurologist of many years, who loves my "trademark" smile, keeps copies of my published articles in his office. On my latest visit, I saw him escorting a teary-eyed woman my age out of his office. he glanced at me and winked. I made a point to introduce myself and gave her my phone number. Since my diagnosis, that was the first time I'd been the caregiver instead of the one receiving care.
Beth Rothstein Ambler resides in Jackson, NJ.
Copyright © 2003, Real Living with Multiple Sclerosis