The Ghost Behind the Wheelchair
by
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The Midnight Caller I try not to see him but his shadow crosses my mind. He visits me in dreams, teasing with visions of the past or impossible hopes for the future. I first noticed him in October 1991. He’d been there since the end of June, but there were other events and situations occupying my mind. The ghost was REAL, as was the new person then in my life. The ghost arrogantly stands just behind my quadriplegic son. In 1997, we are less aware of his presence. Most importantly I would touch you with my story about this ghost and what he has left behind for us to learn. Since Scott’s accident, I have met so many victims of paralysis and their parents, brothers, sisters, friends. NEVER would I choose this lesson; but having had it placed before us in no small or gentle way, we have also been given the opportunity to meet the most wonderfully brave, determined people that one could ever hope to become acquainted with. Those who must endure the injury come in all shapes and sizes and degrees of injury. Those of us who can really only watch and be there... for whatever... also come in all shapes and sizes and types. I was so very, very fortunate and blessed during the time when this tragedy struck me and mine. Family, friends, new friends from work and in other environments who had previously been total strangers. People and experiences as "foreign" as the most distant alien could ever be became as close as the most intimate family members had been. Robin, Michael and Robert were the first "new friends." Each played their own separate role. Robin was the counselor who involved me in the support group, the manuals and informational resources available, and who introduced me to Michael and the outstanding resources available in Orlando. Michael, another victim of spinal cord injury, just a year older than my son and whose injury was almost identical (level), and who was injured about 6 weeks before Scott’s accident: Michael and I were in Orlando; Scott was in Missouri. Hell Week in Chesterfield lasted a week; then I had to return to Orlando where I would work three weeks, then return to spend a week in Missouri with Scott (Chesterfield first, then St. Louis later). During the three weeks away from Scott, I would spend time with Michael. At first, it was to help me learn... but also, I was hoping while I was spending time with Michael in Orlando, someone was doing likewise with Scott in Chesterfield, then St. Louis. In truth, Scott had Rachel and much, much family. I told myself and Scott that by going away, I was giving him my confidence that we’d get through this. The mother in me was so torn.... How could I stay? How could I leave? If I didn’t keep my job and my life together, how could I help Scott in the days ahead...? But how could I leave him? Answer: I had to... but only until I could come back. My youngest son, Roger, Scott’s brother, gave me the answers. So while away, I spent time with Michael, and we became real friends. I still do but less than during those first two-three years. Five years later, unbelievable at the time, it seems life does have a way of going on, filling up again... for both the victims and for those who love the ones who have been injured. AND... Robert, who called this stranger and told me about his life as a quadriplegic; who patiently answered my insensitive (I’m sure as I think back) questions. Robert is also about Scott’s age and again, comparable level of injury. One learns about the "levels" and complete vs. incomplete. Robert was living alone! My mind was thinking it could happen; but it was just a hope until I talked with Robert and heard what he was doing, how he was living (driving a van, going to college; he had a dog and he seemed well-balanced emotionally, strong, confident, happy). Thank you forever after, dear Robert... only later did I come to realize how hard (in one respect) it is to go back and think how one does... try to explain it to others, advise, comfort. Life is full of getting on with it... to go back and remember takes a special strength, a generosity of spirit that should be bottled and sold to every depressed, discouraged, lonely and lost person in the world! From another point of view though, those who have been there KNOW the difference their support and advisements can make... having received so much from others during their own past, personal Hell Week and the weeks that followed, they hunger to return what has been so important to them. They no longer have such a huge need; others do and they more than anyone else can help. How can the counselor or the doctor or the nurse stand before the newly paralyzed person and comfort them? How can a mother or father or brother or sister, husband or wife do any different? None of us who walk into the room can give the one in the bed or the wheelchair or the halo jacket much reassurance. Those in a peer group who have shared such an experience and reality can be heard more clearly by the one who so needs to listen and to hear that, "it will be all right; see, I’ve been where you are, look at me now." Apart from an involvement with these three special people, I read everything I could get my hands on until my brain was saturated, couldn’t absorb more. I read about dysreflexia, bladder programs, bowel programs, accessibility, skin care. I didn’t read about TRANSFERS... and no one had really talked about "transfers." Of course there would need to be "transfers" but my mind had just been focused on Scott’s staying alive... then, learning HOW to do EVERYTHING.... One second I had a strong, totally athletic and independent 6’5" handsome firstborn; the next I had a fragile, totally dependent 6’5" handsome firstborn with a metal thing screwed into his head that had weights hanging down behind the bed. I kept asking how he was "feeling"; he couldn’t FEEL... all of us ignorant others; the "old words" weren’t applicable anymore and we hadn’t learned the new ones yet. Hell Week began for Scott on June 29, 1991; for me, shortly after midnight so June 30th. My brother, Bud, in Illinois called me. The day had been wonderful, spent with friends Billie & Steve; Billie and I had gone yard sale-ing while Steve so kindly trimmed my hedge along the driveway for me. I had been to Illinois and visited with Scott, met his new girlfriend Rachel, spent time with my mother about a month before, over the Memorial Day holiday. I’d just written my sister-in-law, Dot, in Oklahoma that I thought I could finally stop worrying about Scott. It seemed his life was more settled and positive than it had ever been before. Scott had always done EVERYTHING and done it all WELL... which was good and filled this mother’s heart often with much pride, but it often bothered me that he would change plans, locations, hopes and dreams so often. I felt after that visit that he had calmed down and was ready to plan reasonably and long term; that he was content in life. I was so happy to see him in that frame of mind. He came out and worked on his truck... or boat... or something... under the tree in Mom’s front yard. It was a simple visit but so pleasant. Our discussion was filled with harmony. We were on the same track and that was so reassuring; often, in times past, we hadn’t been.
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About the Book
Sudden paralysis is a circumstance no one wishes to get intimately
familiar with, but such tragedies do unfortunately occur. In my own experience, I’ve learned that a
mother will search desperately for the tools of education whenever they’re
required, but when my son was involved in a life-changing accident, I could
find no shared experiences written of by another parent. After living through the experience of the
accident’s aftermath and the many months of rehabilitation, I was eventually
able to sit down and put words onto paper in the hope that another mother would
one day find my experience helpful during their own times of learning and
searching.
That immediate past so suddenly lost, without preparation of any kind,
brought my old son into focus at the same time as my mind was trying to meet
the new one-who was in many ways a stranger based on the physical limitations
and changes now present in his life. During this time is when I met the ghost--
and the handsome man in the wheelchair.
I was determined to do so positively, but had no instruction book on the
new parenting needs. We learned
together, all of us who loved my son, and I can now see that part of the lesson
is that the ghost leaves us in his own time as we learn to let him go.
There is no one-means or one-method lesson book. I have tried as honestly as I can to share
my experience as a mother. My attempt
is supported by my courageously inspiring son who was the motivator and teacher
in many ways and by his younger brother who shared commitment and devotion with
me. At the end of our story-which is
truly a beginning of another-our lives are full and blessings continue to
enrich our times together.
The goal of this book is that the reader will find something that will take them through Hell Week to the start of their loved one’s new life with more hope and confidence. Many have contributed to our progress; I hope I may contribute to the hopefulness of others in similar circumstances.
About the Author
Lila Leona Ridings Darnell was born and raised in the rolling, wooded hills of Terrapin Ridge, a rural area outside of Greenville, Illinois. The youngest of eight children, she grew up just down the hill from the church she, her family and all the families of the other area homesteaders attended. At their late ages, her strict father and mother were a little softer on their baby girl than they’d been with her older siblings. Her father Urban Lee was a millwright in the steel mills of Granite City who loved reading and discussing the Bible and was a gifted writer, and her mother Beatrice cooked, sewed and quilted a wonderful if simple life for her family. "Lila Lee" was married in February, 1961, before graduating high-school in the spring of 1962. Her first son, Scott Alan, became the pride and joy of both of his parents and a large, loving family on September 23, 1963. The young Darnell family traveled much in pursuit of work, settling briefly in Iowa and Florida in between return moves to Greenville. Along the way another son, Roger Kent, was born, on May 5, 1966. Having received the writing gift from her father, Lila learned to tap the well often as a means for dealing with life’s joys, challenges and hardships. In 1974, she became a single-mother, raising two very active boys while navigating a career as an administrator and while learning of the unprotected world beyond marriage. During the years when her boys were growing into men, her blood, sweat and tears were all set down in volumes of verses, many of which have been destroyed and buried along with the more difficult memories. What remains is a strong mother and an independent woman, who enjoys a special solace and strength every day from her knowledge of the two sons she helped to raise and the lives they’ve built from their bonds of love and experience. Still compelled to write both fiction and verse, the writing of this book was yet another example of the way Ms. Ridings Darnell has used writing as a therapy throughout her life’s journey. According to the feedback of the many readers who sat down with these pages as they came together, the words have now taken on a medicinal, healing life of their own, no doubt from the sincere desire of this devoted mother to not only make a difference for her son in a time of unimaginable difficulty, but to build hope for all the others who have been touched by the sudden, life-shattering arrival of a paralyzing injury. Ms. Ridings Darnell lives, works and writes in Orlando, Florida.