lingering twilight: a journey with multiple sclerosis
by barbara reed

My sister Carol was born a wild anomaly. Red-haired among black and blond, she was a throwback to our pint of Irish blood and the replica of a great grandmother. Her freckled nose and fearless approach made her popular among the adults around us. They often roughed her hair and asked her where she got it. Her answer, at an age much too precocious, was often “The mailman.” She loved absolutely the startled, appreciatively naughty laugh that inevitably came. My mother blushed and I was meanly jealous.

Although I was older, I was frequently caught in her wake as she charged into life and adventures of all kinds. She had many friends and I tended to float in her leftovers. I resented her and for years picked on her and tried to wrest from her the fruits of her own doings, an early setting of my own character that has taken a full lifetime to overcome.

Trying to unravel the squabbling of children is murky and too subjective, but at the time of coming of age, when she had boyfriends and I had envious fantasies, she initiated me into her world of rebellion. One evening she waited for our parents to leave and, grabbing my hand, she pulled me to the sliding door in the family room.
“I’ve been wanting to do this for days,” she said, as she pulled open the slider and filled the room with fresh air. She carefully produced a Parliament filtered cigarette, shoved it into my gapping mouth and lit it. I was 15 and she was 13½. It signaled the launch of our teenage rebellion, our coalition against authority.

It was a wild time from then until we left home. We’d sip from our parents liquor stash, we’d smoke at every opportunity, we’d (more she than I) sneak out to go see boys. We threw forbidden parties and joined the baby boomer population that considered all adults as enemies. It seemed these were mostly Carol’s ideas and I dubiously trailed along, because I couldn’t find anything else nearly as entertaining to do.

My mother would later wonder aloud at her propensity for these activities, when, according to her, Carol could have had a proper date at any time. It was like that with Carol, she’d go the hinterland route at every chance. It gave her an appealing bad-girl flavor, although she never descended too far from the mainstream. She did well in school, she was very bright, and she was on her way to college when her hands and feet began to tingle.

After a painful spinal analysis and MRI in 1963, she was given a provisional diagnosis of multiple sclerosis. As a provisional diagnosis, we were not certain for years whether she truly had MS. This caused our whole family more heartbreak than having a clear knowledge of her diagnosis might have done. We decided not to act as if it were true. We all believed we would find out the real culprit in time and that all would be well.
From there Carol and I careened through the archetypal 60s, going our separate ways to college and relationships. It was turbulent and adventuresome, living in the Bay Area in the 60s. By the age of 23, she was beginning to use a cane to keep her balance.

When she sold her little VW Bug we were still not saying the “MS” word and it had become family habit to deny that she was different in any way. It was the era of self-help and she doggedly pursued every form of self-healing she could uncover. It ranged the gamut from EST, blood filtering and psychic healing to special vitamins and diets. She firmly believed that if she could just get the right perspective and perform the correct act, she could cure herself of this unnamed malaise.

Through it all, Carol continued to draw into her world friends and supporters who loved her spark and spirit. She moved around a lot and always had charming little abodes filled with poignant pieces of art and gifts from admirers. She was generous of spirit and thoughtful.

In those years, there were hospitalizations and finally, the move to assisted living. She tried desperately to maintain her independence but the pressures on church groups and friends became enormous. In her late thirties, she was forced into convalescent care and became, by degrees, totally dependent.

Today, twenty years later, after untold sorrows and difficulties, Carol and I find ourselves here in the mountains, at the end of the longest of journeys. I read to her now, stories that I pick carefully for their inspiration and exotic images. It is delightful to catch glimpses of that old spark in her eyes while she listens to stories that she herself might have lived.

We don’t talk much anymore, but we travel the world together.

She can’t speak very clearly, nor can she move her own body. It is a crippled shell of bones that keeps her tied to this plane. Her red hair has streaks of gray, but still brings praise from her new army of admirers. I always find her the same, laid quietly in her bed, bent hands crossed on her chest, dozing and looking out the window as day changes into night and night into day, again and again and again.

She never had a normal life and I sometimes think her spirit was so wild because she was grabbing for something that she knew, on some higher level, would be fleeting. She has not been able to develop a full emotional life and she has not been cushioned by madness or senility. Her fully alert life in nursing care has been surrounded by death and sickness and she has become totally at the daily loving mercy of her caregivers. She doesn’t complain so much anymore or fight it. We have gotten her onto light medication that eases her terror and loss of a life and numbs the vast sadness that wells up constantly. As I sit with her on the edge of that cavern of the unknown, I face my own mortality in a living sense. I share with her the tangible knowledge that earthly ambitions are futile and we watch together the sunset of a life that lingers as if it were already dead.

But not quite. Though her contacts are few, she still manages her humorous quips and sharp barbs as she interacts fully with those who are with her on a daily basis. I am bone weary from the half century, and have settled into what I can do best, but she has continued to create friends and admirers as she lingers on the sheer face of passing.

The moment that carries most people across more or less quickly has frozen for Carol. Recovery is not an option, self-help a forgotten dream. There is only the final breath and then crossing. With a body that is a living tomb, but organs that still sustain life, she is glued to the full screen specter of a charging train poised at the precipice.
In all this she has found peace, finally, a full, deep resignation and acceptance. Soft light surrounds her now and she always smilingly asks, in her severely constrained way, after her niece and nephew, about my latest drama. She still fights back from debilitating episodes and is lavish in her gratitude to all who aid her in the slightest way. She is not particularly religious anymore, but, to my eyes, she has a full compliment of angelic attendance with her.

When she finally gets there, and we can all release the pain, I am sure she will continue to find new roads of adventure, and that she will still be pulling me over to the window of new experience and information from the life beyond. Oh, and yes, I apologized and she forgave me long ago for being such a bully of a big sister. Thank God.

 

Epilogue
Carol passed peacefully in the morning of an early spring day. She had waited for her family to say goodbye, flying out from the west. She had waited for the flowers we brought her from her long-time love. She looked deeply into our eyes and, although unable to speak, told us in so many ways how much she loved us. All cycles completed, she left to the sweet sounds of a guitar playing just for her.

 

Barbara Reed has been a WNC resident-in-healing for 6 years. Moving through the return of Saturn has brought life to the abandonment of complete renewal. She currently works for the American Red Cross Blood Services in Asheville.
[ blreed@charter.net ]