shake

This case is especially true when one is isolated and is never shown others who are dealing with similar situations. In1992, I was almost fatally injured and for an entire year, I had no one to talk with who was dealing with the same issues. I'm not writing this as a plea for sympathy. Life is a journey which one must face alone and I have been given an amazing collection of gifts and skills to pull-off this endeavor. Simply, I am trying to illustrate why it's helpful and should possibly be mandatory to attend a camp like Shake-a-Leg within a reasonable amount of time after our "cart has been upset."

The oldest of five, I always have partners. These people share, for the most part, my goal of a happy, satisfying life, many of my dreams, my problems, and have many similar issues to my own. After my injury in 1992, I felt fairly alone on my journey.  Not only was I facing the world with an "inadequate compass," but I knew no one for whom physical trauma had occurred or even anyone who used a wheelchair.  Shake-a-Leg, "Shake" was set up in Newport, Rhode Island, the hometown of the director. It had top-notch therapies, mainly served people under forty years-old, and was billed as a second-stage rehabilitation camp, specializing in sailing. As many wonderful things fade, Shake was only open for a few years. I commend the directors for all of their work, having access to it was vital at a pivotal time in my life. It saddens me that thousands of injured persons will not share the joy of Shake.

    My father had two sisters who lived on on either coast who played huge roles in the lives of my siblings and me. Ellie, who died a few years ago, lived on the west coast and was successful in the banking industry. My sister, Sasha did her graduate work near Ellie and they played huge roles in each other's lives.  His younger sister, Joan, lives in New York City and became my central host/family-member when I attended Wellesley College, near Boston.  She acted professionally for years and is now a theater coach for Broadway.

Joan's friend, Karen Bragga, was a member of a group of actors, producers, and directors called "The Manhattan Class Company."  A leader of the group was associated with a man, Harry Horgan, who had been paralyzed in a diving accident and partnered with his father to begin Shake.  He was really into yachting and saw the need for a second-stage rehabilitation camp for similarly injured people.  Although I am not paralyzed and have no interest in ever yachting again, it was thought that I should go and possibly benefit from the treatments. As I live in rural Iowa and was living in a small town, rehabilitation services were severely lacking and the idea of Shake seemed exciting, positive, and necessary.   I was allowed entry and my parents lovingly sent me to Shake. I went for two summers and initially, my stint was only to be for three weeks. Thankfully, it became nine and was the best way, personally, to learn to love myself and appreciate my life.  Remember, I am from Iowa. Usually, folks don't go far away.  

Most of the residents had spinal cord injuries and were paralyzed but a few of us had different injuries (like brain injuries or cerebral palsy). With one exception, we were all in wheelchairs and could benefit from the activities, therapies, and sense of community that Shake provided. While my initial stay on the grounds of this facility gave me a new sense appreciation and knowledge of myself and new abilities, it was also the spot for the formation of some lifelong friendships and provided an education to a new life.

Although I am positive that there are a few similar places, Camp Shake-a-Leg is now closed and that fact saddens me as played such a huge and vital role in my adjustment to this new phase of my life. While growing up, the few people I had known with disabilities had been born with them and I never really interacted with them. I would never categorize my parents as sheltering or as people who intentionally sought to hide this aspect of life. There just wasn't time to delve into the realities of others.  As the eldest girl of five kids, there was always lots of laundry to wash, dishes and babysitting to do, books to read, after school activities, boys to date, jobs to keep, and friends with which to exchange gossip. My complete ignorance of this entirely different lifestyle was never intentional or mean-spirited.  It just was not there.  I knew nothing of leg bags, spasms, seizures, or even the civil rights laws which protect the lives of people who are disabled, or the ADA (Americans with Disabilities Act).  In fact, while at Shake a state Legislator dropped in and began his talk by asking if we knew what the ADA was. Thankfully, I kept quiet, because until he informed us, all my mind could come up with was the answer "American Dental Association."

After he tore his spine in a diving accident, instead of giving away his sailing-gear, Harry adapted his methods and his boat, making the experience an activity in which he could participate. Thus, the advertised goal of Shake was to help paralyzed persons to sail with accommodations. As I have spent most of my days in the landlocked state of Iowa, I have never had a deep appreciation for nor yearning to sail. The key program of Shake which captured my interest was drama-therapy and since it was held during the final three weeks of the summer,  I had over six weeks to engage in the many other therapies offered at Shake, to meet the other participants (mainly from New England), and realize how fortunate I am. A significant way that I am/was lucky was that I was in the tiny minority who, as stated, was differently injured  from the majority. When the brain has been injured, like mine, much of your being, memory, thoughts, intellect, and feelings vary from how they were, but in a spinal cord injury, the is paralysis from the point on the spine that was damaged or severed and everything below it. Although I also spend most of my time in a wheelchair, my injury lets me walk, with assistance. As many of the body's functioning and organs are ruled by the brain, TBI's are horrible predicaments and necessitate acceptance over a lifetime, but do not prevent extremities from moving. I was reminded on a daily basis that I was lucky enough to move and feel my leg, not to require a ventilator to breathe, and not to need to have someone plan and execute my daily routine.

This, coupled with the fact that I was in my early twenties and loved live music, made me able to happily befriend some of the able-bodied assistants and nurses. The majority of this group were guys from Georgia who played in bands at home and formed a mini-band who mainly played in Newport.  I am adventuresome, grew up with three brothers and am far from a delicate flower.
The person with whom I spent the most time was Amy, a nurse's aid. The two of us rode around together, listening to trending music, getting snacks, discussing boyfriends, college, and goals. Although there were other nurses, therapists, and aides, she is responsible for turning my first summer with a disability into the best summer of my life.

I also met Chapin that summer. Although I have fallen out of touch with most of the other residents, I'm delighted that we keep tabs on one another and each others' families.  Although summers are semi-crazy and there is a vast assortment of other commitments, we make an effort to be with each other every few years.  Chapin, "Chap", is a few years younger than me, was injured around the time I was and lives in Virginia. She was informed of Shake and for some outrageous reason, decided that she would leave her comfortable cottage and venture to Newport. Although we are friends and peers, Chap's perseverance, dedication, patience, knowledge, and understanding has made her into something of an inspiration and when with her, I always feel like a bit of a side-kick...not in a bad, ignored way but she is incredibly knowledgeable. She also has a degree in counseling but, unlike me, derives an income with it and has her own private practice. Chap is paralyzed from the shoulders down, so in the twenty-four years that I have known her, not only does she make me wonder and giggle, she also makes it impossible to look at my situation and be depressed. Because of her paralysis, Chap is not able to roll in the night. Thus, she gets these bedsores, aka pressure sores, her bones cut into her flesh and thus, she spends way too much of her time "down," on her back.       .

     Although Shake helped me to achieve new friends, a higher degree of self respect, comfort with a disabled body, a love of being "with the band," and such, it was decidedly a rehabilitation camp. Many stimulating therapies were offered and I partook in several, got stronger, found out how to function successfully but in a different way.  The therapists were terrifically skilled and did not treat participants with kid gloves or as buffoons who had "just stepped off the boat." (Probably an offensive statement...sorry!)  In all probability, since the owner of the camp was also disabled, he knew the right qualities in therapists and maybe even did the interviews himself.

     I briefly mentioned Amy but, in fairness, I need to do so again. A mentally and physically strong friend who also loved live music, Amy would take me weekly to open mike events which featured "the boys" in their lil band, Soulfood.  They may not have enjoyed being labeled as a group, but who cares? Not only do I have three younger brothers to whom I refer as "the boys," but they were also pivotal and essential to my fantastic summer and were instrumental parts of my journey...like my brothers.  Having worked there the summer prior to my attendance, two of them, John and Tim got employed at Shake and John talked his brother, Dave into being part of Shake the next summer.  I think they were supposed to be nurses aids, but they were given many more (often strange) responsibilities. Being endowed with great voices and parents who were willing to send them to Rhode Island to work for a summer, John and Tim were actually lead singers of two local bands in there hometown, Gainesville, GA. They entertained us by playing nightly.  One of the three had a summer romance with Amy and she was sure to be wherever he was.  In order to make the chase less obvious and to have fun, she needed a buddy (me) to accompany her.  I had fun. It was all good. 

     Amy was employed in her field and the boys got to hangout and learn theatrical tips from the folks from the MCC. Of course, the camp's management took advantage of John, Dave and Tim and insisted they be drivers of the camp's van, the entertainment leaders, changers of urine bags, extras in our theatrical production, etc. All of the attendees had recently suffered a huge, life-changing trauma and John, Tim and Dave were young good-looking guys full of stories and antics who would sit with someone through a seizure, prepare him for bed, help him lie down and play rock n roll until 2am; they were perfect.  Often, Tim would say to me, "I have no idea what's going on", but after you've been in a coma for a month, you are probably a tad bit hazy too. Thus, his proclamation was perfectly felt.  One needs the medical training and expertise of a doctor and other medical professionals directly following a life-threatening injury, but then they just need people who will help them to live in a new body. Strong, smart, musically-gifted, and kinda crazy, these three sustained the perfect balance for a summer directly following an absurdly traumatic episode.

     Things like spasms, seizures, catheters, and blackouts were presented to my life at Shake. These are not usually essential to be aware of for most people but they became an important aspect of my new paradigm. Fortunately, these topics were fairly recent introductions into the lives of most of us, so it was a shared-experience.  The traumas that had occurred in our lives were easier to take and much less scary.  Although our injuries, outside lives, and relationships varied, it was a place of equality.  No one had any time or need for the pity which always exists in most other relationships. There was also fairly newfound friendship, respect and laughter over shared stories, interactions with anyone not in Shake and many inside jokes.

     As stated, the clear majority of other campers were paralyzed and simply having the ability to feel everything that happens to my body was HUGE and a definite reason that I was fortunate to attend Shake.  As my lack of balance has put me into the Emergency Room about fifteen times, plus a few surgeries, I am well-aware of the joy of too many pain relievers.  No one would  ever guess that I gained a respect for pain and that I consider that feeling it is be a luxury.  Simply, if an appendage or ligament is causing pain, nerve ending are working. My brain lay dormant for a month, needing to heal. Terrible things happened. Whatever. I don't wanna talk about those things, but just know that having an urge to urinate or defecate is never pleasant but are privileges which I learned to enjoy. 

     Before closing, I want to speak of a man I met at Shake. His name is Zach.  With any luck, this description will more fully explain the sense of fortune I derived from Shake. As my senses of balance, vision, and judgement were impaired, as was stated, I am well-associated with pain. However, beyond being thankful that my nerves work, I usually think of Zach and automatically feel a huge amount of empathy and know that it could be worse. As a young, eager, newly married professional, Zach learned of Shake and immediately applied. As most other attendees had been in wheelchairs for at least few years and had learned the right dosage of the appropriate pain medication, Zach did not have enough time to educate and prepare himself for life with a severed spine.  As I have no memory of him swimming, yachting, enjoying the band or even being out of bed, the odds are that it was just too soon for Zach to even attend Shake.  We had an R.N., a variety of nurses' aids and a local consulting physician.  Anyway, although I hold a masters degree in rehabilitation counseling, I have zero medical training and am unable to explain this phenomenon.  Even if I did, the issue of which I am speaking sounds like an uncommon nerve damage-issue and I am uncertain that it is even studied or explained. The issue was that nerves misfired and Zach constantly felt as if he was on fire. Nothing could be done to give him comfort and Zach's wife spoke of imagining a double suicide. I was told that Zach's pain is common to quadraplegics directly following an injury but I have no clue as to the truth. However, I met Zach the first summer which I attended Shake and loved my experience so much that I eagerly registered the next summer. Obviously, the benefits did not dissuade me from appreciating the entire experience.

     Additionally, before I close, I would like to discuss the "theatrical" portion of Shake, the actual reason that I was attracted to this grand experience. Since my vocal cords were severely injured during my injury, my voice is not only soft, but my speech is slurred. Naturally, things have improved in twenty-five years and I am no longer incoherent, but during theater, we were given exercises to work on our volume and diction during the practice sessions and although I asked for and was given a part which had only a few lines during the final play, I left feeling like I was understood and made a contribution. Since the amazing reputation of the Manhatten Class Company was what enticed the boys to come all the way from Georgia and since my brilliant and talented Aunt has similarly gifted friends who would never be with an organization which does not offer the best drama, none of this should come as any surprise.

     As I completed my public high school years with a class of thirty-one and live in rural Iowa, the offerings presented to me have been small.  As an agnostic, I will never say that I have a guardian angel or savior and I know that the rehabilitation offered in more metropolitan hospitals have offered clients with similar feelings and memories but, camp Shake-A-Leg popped in my radar at the optimal time in my life and the fact that millions of others will miss this is a tragedy.