In The Shadows of Angels
Reflections of the MS Weekend Escape – Brian Mason Respite Camp at Smith Mountain Lake
In the shadows of angels there is a spirit and that spirit longs to dance. That spirit stirs restlessly within us all. A spirit born in our childhood that ran and played free of care, unaware that the world might one day serve as judge. That judge sometimes can be cruel, but within the spirit we long only to dance and to erase time and the restraints of self-consciousness. If only for a moment we could live free. Free enough to allow our spirits to soar and to dance, and if that moment could last for a moment longer. If only that moment could last forever. Perhaps that spirit needs only a breath to awaken once more. Imagine if again she danced.
For many of the champions battling the effects of Multiple Sclerosis, The MS Weekend Escape – Brian Mason Respite Camp at Smith Mountain Lake is that breath: that chance to breathe and to know that it’s ok to dance.
When it began in 1996, the MS champions who first gathered at the Skelton 4-H Conference Center at Smith Mountain Lake could have never imagined how the event would evolve into what it has become. Now on a weekend packed full of activities and excitement it is impossible to single out a defining moment that would top all the rest. For everyone involved, whether guest or volunteer, those moments are too numerous to count and it’s often the little moments that have the biggest impact.
It could be the quiet times with a familiar face when the rest of the world sleeps. Or sharing the first light of a cool autumn day with a new friend as the sun lifts beyond the sparkling water. For nearly three decades the Weekend Escape has been a haven for those moments and more.
Multiple Sclerosis (MS) can show up unannounced at the doorstep of anyone at any time. It has no regard for race, gender, age, social or financial status. It’s not even consistent in how it acts and often does not play fair. Like a silent ghost, it creeps in without a sound, until you can ignore it no more. The unpredictable nature of MS is one of the greatest challenges in finding a cure, and often an even greater challenge in learning to live with the disease. The symptoms of MS are varied and often go undiagnosed for years. Perhaps the biggest challenge is trying to get others to understand something that is just so hard to understand.
There is one common thread among the MS champions at the Weekend Escape. They all have hope. Every individual has a story and each story is unique and worthy of a novel. MS not only affects the one living with the ghost, but it also impacts everyone around them. The family and friends that must rally in support, they all must have one thing. They must have hope. Hope for a cure, hope for relief, and sometimes just enough hope to make it through the day.
There’s an indescribable magic in the air during the Weekend Escape. That magic brews for weeks and months prior to the event as plans are made. Like far reaching veins that spread across multiple states, the magic flows throughout the year, destined to return to the heart of hope. The magic steeps from the guests longing to return and from the first timer having no idea what to expect. But when a group like this comes together with a common cause and purpose, a message of hope prevails and all those nights filled with darkness are, for the moment, in the past. “I start getting excited about next year on the ride home. I think about it practically every day.” says Pat, who has attended each event since its inception.
Another guest named Larry lost his wife Brenda to cancer in July. Brenda suffered from MS and was a superstar at the Weekend Escape. In spite of their loss, Larry and his son Stephen came anyway. “These people are like family to me. Brenda would want us to be here. Her spirit is here with us.” said Larry. Brenda loved to dance and in previous years she and her son would be on the floor for every song. On a night full of joy and sorrow when the memory of Brenda was honored, Stephen celebrated his mother and danced once more, to every song. Her spirit was there indeed, dancing.
The Weekend Escape magic is fueled by the MS Society staff and countless volunteers who work tirelessly throughout the year to make sure every detail is met. It’s no wonder that they work full time for such a great cause. Full time for them is way more than a typical 40 hour week, especially during events. The planning for next year begins even before the current event ends.
The MS staff and volunteers meet after Saturday’s lunch as the cafeteria workers clean around them. Another successful meal where hundreds of people gathered to eat, laugh and share stories. The vast room is quiet other than the chatter of great minds and the shuffle of tables in preparation for the ice cream social later that afternoon.
The list of people that have made the Weekend Escape a success over the years is far too numerous to count and it would be impossible to name them all. What can be said is that there is not a finer list of amazing people, each with a great big heart and a kind, humble, compassionate spirit. The reward for their efforts is simple: smiles, hugs and tears. Mostly the smiles.
In between all of the activity there is Q&A session on Saturday afternoon with sponsor Brian Mason and other MS leaders. Mr. Mason has underwritten the event since 1998 and his presence is inspiring. The Respite Weekend Escape is aptly named in his honor and without Mr. Mason’s support the event would have never experienced the growth and achieved such monumental success. He will be the first to credit the countless volunteers, the MS staff and of course all the guests who make the Weekend Escape so special. The Q&A session allows the guests to call upon Mr. Mason’s vast knowledge and resources. Topics in the open format range from insurance to the latest drugs, and from research funding to lobbying at the national level. The town hall type meeting creates a great sense of community for all of the guests. It’s just one more piece to the puzzle of hope.
Still Mr. Mason brings so much more than financial support. He has been a leader with the MS society for many years, helping to raise hundreds of thousands of dollars for the cause. In fact, at the 2015 National Leadership Conference in Fort Worth, TX, Brian Mason was inducted into National MS Society’s Volunteer Hall of Fame for Funding the Mission. Upon receiving the award Mr. Mason noted, “When someone is afflicted with a disease that has no cure, the involvement of others offers hope and sometimes that is all one needs.”
Mr. Mason began his involvement with the MS Society many years ago when the son of one of his employees was diagnosed with the disease. To measure the impact of his contributions, not only to those battling MS but to everyone around him, would be impossible. He quietly inspires with his actions, his determination and his resolve. Not one to ever seek accolades or awards, he readily credits others. Perhaps it is only fitting that Brian Mason is at the center of what has made the Weekend Escape so meaningful to so many for so long. Without flash or fanfare the quiet retreat in southern Virginia has touched the lives of a countless many and offered hope.
Others offer hope in many ways too. Individuals like Ken provide unique leadership and he has attended the Weekend Escape for a decade or more. Ken was diagnosed in 1972 and has lived most of his life with MS. Much has changed since then and the advances in both care and perception are much better today. “But we need to do more” Ken says, and he is a leader in that effort. Now retired from a teaching career that saw many challenges and rewards, Ken states that he is too old for medication. But that does not slow him down. Ken is a master storyteller and has seen and done a lot in his life. With a bright smile and gleaming eyes he loves sharing memories about his former students in Detroit.
Today Ken directs his passion for helping others to serving those with MS. He dedicates countless hours as an advocate, lobbying for more funding, teaching others about resources, and counseling many through the peaks and valleys of their journey. During the Weekend Escape Ken is most always engrossed in conversation. His message of hope is the same as the other leaders. The Weekend Escape takes that message to a more intimate level by sharing the knowledge that you are not alone in this fight and that others will stand, or sit, or crawl with you. Leaders like Ken send a strong message – knowing that you are not alone is powerful hope.
Imagine for a moment that you have this potentially debilitating condition of which there is no known cure, and yet you feel inspired by the journey. Many of the Champions at the Weekend Escape talked about how their affliction has actually been a blessing not only to themselves, but to others as well.
Jacquie was diagnosed at a young age in 2006 and has since become a star in the mission of raising hope for those with MS, and anyone she meets. She is an advocate, an encourager and an inspiration. “The dark times often precede the light” Jacquie said about when the effects of MS became so overwhelming that she was forced to quit her teaching job. Yet, that situation in turn allowed her to spend almost every day with her father, helping to care for him during his last year on earth. While dealing with the loss of her father, Jacquie’s niece was born and her sister asked her to become the full time nanny. From the dark times Jacquie finds light.
Throughout the weekend Jacquie laughed, cried and hugged most everyone at the Weekend Escape. Her smile and energy are so contagious that you would never know the pain she endures each day. Every week she must self-inject the medication that helps to keep her moving. Her vision comes and goes and stability can be an issue. Sometimes she falls for no apparent reason. But none of it keeps her from fighting. Jacquie is a runner and a swimmer and throughout the weekend she jogged all around the sprawling grounds of the Skelton 4H Center, training for her next ten mile race. Her sights are already set on a half marathon, then a full marathon. Recently, she and her mom formed Jacquie’s Team Hope and through her running they have raised over $17,000 for the MS Society. She continues to run.
Then there is Joe. If you’ve never attended the Weekend Escape, upon arrival someone is certain to say, “You must meet Smiling Joe!” No doubt that you’ll know who he is before any formal introductions. His smile beams throughout the room. Joe is a veteran of the camp and it simply would not be the same without him. Smiling Joe brightens the day wherever he goes and his energy is electric.
Much has changed for both Joe and the camp since his first trip. Now confined to a wheelchair, he requires round the clock attention. The love and support of his amazing family is abundant and one of his brothers attends with him.
But life is not about what he could do before MS, it’s about what he can do now. And what he will do. That’s a pretty bold statement for someone who used to run a 5 minute mile. Joe is a VMI cadet and holds a Master’s Degree in Engineering from West Virginia University. The aggressive experimental drug he has been taking in attempt to regain some mobility has impacted his speech, but neither his smile nor the brilliance of his conversation have diminished. There’s no small talk with Joe. He’s going to find out all about you and soon you’ll be immersed in global economics and investment strategies. However, he probably won’t tell you about his amazing creative talents, but if you get the chance be sure to ask about his woodworks. Each awe inspiring piece tells a story. There are no handicaps with Joe, only brilliance, artistic beauty, and that smile.
Jacquie’s and Joe’s stories are like so many of those with MS, yet each story has its own many twists and turns. There were champions with no apparent physical symptoms and champions in electric chairs and oxygen tanks, and many in between. Yet, they all wore the brightest and most beautiful smiles. The Weekend Escape offers a chance to escape the day to day, and sometimes hour by hour battle with the ghost. Trained professional caregivers are on call all weekend to assist, giving the regular caregivers a much needed escape too.
Events and activities fill the itinerary from morning until night and there is something for all ages. From a magic show and bingo on Friday night, where everyone wins a prize, to Saturday morning yoga and massages. The afternoon is filled with games, arts and crafts, an ice cream social and the all-important preparations for the Ball on Saturday night. The air is constantly filled with anticipation for the next activity.
Perhaps even more meaningful are the little happenings not on the agenda. One camper said that each year he looked forward to meeting a friend and the hours they would spend playing checkers, laughing and telling stories. Others shared tales about the lifelong friends they have made at the Weekend Escape. Many of the families attending not only look forward to it all year, but it has become their annual family vacation. For others a new tradition begins. Everyone says, “I’ll be back next year!” The MS staff, volunteers and Mr. Mason have all received volumes of letters over the years, each from a heart filled with gratitude. Each with a story to tell. Many of the letters and notes are joyous, and yet others need to share the sorrows of loss. But the common theme that rises from the core of the Weekend Escape is hope.
By Saturday afternoon the entire 4-H campus is buzzing with excitement and anticipation, and for good reason. A glorious blue sky hovers above rolling green fields that stretch down to touch the sparkling waters of Smith Mountain Lake. A brisk hint of autumn is in the Virginia air, a moment begging for a colorful change and a setting so perfect and only befitting for a fairytale ending. The magic of The Weekend Escape transforms every volunteer, every staff member and every guest.
The highlight of a most unforgettable weekend happens on Saturday night. However, it takes a lot of work and preparation to get a prince and princess ready for The Ball. Imagine what it might require to get hundreds of royal couples and their families ready, all at the same time.
Imagine the thrill of a lady picking out a new dress, shoes, and accessories. But first she has her hair, nails and make up done, all by a doting team of professionals. Then imagine the joy of a man who, after a fresh haircut gets to pick out a new suit. With a little help he finds a belt and shoes to match, and the perfect shirt and tie. What if the dress or the suit does not fit just right? There is a team on site to take care of that too. Don’t forget the kids! Yes, they get new outfits and haircuts as well. Now imagine all of this at no cost. This is Cinderella’s Closet.
Cinderella’s Closet began with a simple idea by MS champion Suzanne, and has evolved into a monumental event with a life of its own. The name is somewhat deceiving though. ‘The Closet’ is less a closet, but actually occupies an entire building at the conference center. One room is filled with long rows of dresses and suits hanging on racks. Beautiful evening gowns and dapper suits in all sizes and colors to choose from. But what if the one you really love is the wrong size? Not to worry. A team of volunteer seamstresses are on site and ready to make alterations. They literally spend all day Friday, and most of the night, and then all day Saturday hemming, stitching and sewing with fervor to ensure that every dress and every suit fits perfectly. How they get it all done is a mystery, or perhaps a little fairytale magic.
The floor in another room of The Closet is filled with rows of shoes, and atop the tables are belts, purses, scarves and all sorts of accessories. All of the clothing is donated, and all are top shelf items that anyone would be proud to wear. Anyone attending the event; guests, family members, caretakers, staff and volunteers can visit Cinderella’s Closet and pick out a new outfit for the evening’s talent show and dance. They get to take them home too. The real Cinderella may have lost a slipper and her dress turned back into regular clothes at midnight, but not at the Weekend Escape. The magic and their new outfits lasts much longer than just one night.
“I’ve only felt beautiful about three times in my life,” said Pat laughingly at breakfast on Sunday morning, “and last night was one of them.” Pat is more beautiful everyday than she would ever admit and her smile is radiant, but feeling beautiful, now that is something. She was still beaming from the previous night when she rode her electric chair chariot to the Ball alongside her handsome husband.
Help abounds in many forms and an entire team of make-up artist and hair designers are on the Cinderella’s Closet Team. Volunteers from a local beauty school bring an abundance of supplies and creativity to The Skelton Center. All day Saturday they do hair, make-up and nails. Everyone that enters Cinderella’s Closet is beautiful, but a transformation occurs. You can see it when they walk through the door, nervous, timid and perhaps even afraid. Then later when that same person floats out the door beaming with a newfound pride, it becomes evident that feeling beautiful comes from within. This too is Cinderella’s Closet.
So much love deserves a night to shine amidst the glitter and glow of a glorious Ball. Saturday night’s parade of Cinderella’s Closet kicks off an evening of endless fun and everlasting memories. To the backdrop of Pharrell’s Happy, many stride behind walkers or ride in electric chairs or walk hand in hand. All to the cheers of adoring friends and family. Following the glamorous precession the talent show features many fearless guests displaying their musical, artistic and poetic gifts. Then the lights are turned down and the music is turned up. No Ball would be complete without dancing. So they dance.
Hope comes in many forms and appears in every shape and size. We may think of hope as the possibility of a simple desire, or as an intangible spirit that lingers in the darkness, a glimmer of light when there is nothing left to grasp. Whatever the meaning, hope is real.
In the shadows of angels there is a spirit. And that spirit, she longs to dance. And her name is Hope.