March 21, 2007. I’m sitting in an adaptive bi-ski at the top of Crawford’s Blaze run, at the Bretton Woods Mountain Resort in New Hampshire. Across the valley I have a beautiful view of the Presidential Range of the White Mountains. What’s a girl from Nashville, Tenn., who’s almost completely paralyzed from ALS, breathes with a ventilator and has never skied before in her life, doing here? It’s a long story ...
|A volunteer "tetherer" glides the author down Crawford's Blaze run. All photos courtesy of Bretton Woods Adaptive Ski program.
I love watching finely tuned athletes at work, especially since I have little or no muscle myself. But the Olympic Games commentators on TV spend too much time talking about the athletes’ personal lives. I love the sport, not the melodrama.
Who was this Bode Miller everyone was crucifying on and off the slopes? Their comments made me take a closer look at alpine ski racing. What I discovered was an excitingly unpredictable sport, where .01 of a second could win the day. I was hooked.
Bretton Woods Adaptive Program
I was ashamed at how little I knew about the U.S. alpine ski team. I set to searching the Internet to educate myself on the sport and its athletes, and discovered that Bode Miller supports the Bretton Woods Adaptive Program. This incredible program allows people with a wide range of disabilities to ski using specially trained instructors and adaptive equipment.
Though I felt myself beyond the abilities of this program because of my spaghetti body and ventilator, I still was inspired to create a computer art piece called “Go Fast” (see cover). In it, Bode Miller guides me down an impossibly steep slope on a sort of sit-up sled. This picture expressed the freedom I felt when I watched alpine ski racing. I e-mailed my picture to the Bretton Woods adaptive ski program on April 28, 2006.
Cris Criswell, acting program director, e-mailed me the next day. He included a picture of himself on his mono-ski. Cris, a retired business executive, took up mono-skiing 10 years ago as therapy for his post-polio syndrome.
|by Erin Brady Worsham
Also in the picture was Tom Wade, a history teacher from Milford, Conn., sitting on an adaptive bi-ski. Wade, a quadriplegic, is tethered down the mountain by another skier from behind. It was my first inkling that someone like me could ski. Cris cleverly planted the seed, and then sat back and let it grow.
On June 13, Cris broached the subject of our coming to Bretton Woods. “What do you think?” he asked me by e-mail.
“I think I think about it every day,” I said. “I think God is telling me to get my butt up there.” The adaptive program had never dealt with someone quite like me! I think I was a challenge!
But New Hampshire is a long way from Tennessee. It would take two long days of driving to get there. I couldn’t even consider a trip of that length without another adult to help my husband, Curry, care for me and our son, Daniel, 11. Our good friend, Iva Webster McGavock, came to our rescue. On Feb. 4 this year, I gave Cris the green light. We were going to New Hampshire.
As the day of our departure drew near, my respiratory people at Apria Healthcare started to panic. Their Littleton, N.H., office had reported a temperature of 9 degrees Fahrenheit. According to the maker of the ventilator, Pulmonetic Systems, the optimum temperature range was 41 to 104 degrees.
If my circuits seized up, I’d have to go to the hospital until they could locate another special-order ventilator like mine. But I always travel with a backup ventilator, and the weather forecast was for the low 30s and 40s. We went ahead with our plans.
Bretton Woods, N.H.
We pulled into the Bretton Arms Country Inn, on the grounds of the famous Mount Washington Hotel, at 4:47 a.m. on March 20. I had just enough energy to take in the white clapboard charm of the old inn, which was built in 1896, before falling asleep in our spacious wheelchair-accessible room. The morning sun revealed the startling beauty of the White Mountains all around.
The next day we met Cris and Sandy Olney, the incoming program director, in the base lodge. Cris had suggested we have a dry run to work out any kinks.
We were shown two models of bi-ski. Neither had any head support, so Curry suggested bolting the headrest from my wheelchair to the back of the bi-ski. A template was taken, a plate was made and attached, and we were ready for the transfer. Sandy, whom I dubbed Earth Mother because of her kind eyes and long golden braid, held my head while they moved my headrest.
Curry transferred me into the bi-ski and I was tightly belted into the seat. Every detail was addressed. These people are about safety — they don’t want any surprises!
|Safety concerns take top priority as the author is fitted and fastened into a bi-ski.
Run Day, March 21, dawned clear and sunny with brilliant bluebird skies. It was supposed to get up to 32 degrees. I knew that between the sun and a warm blanket over the ventilator, we could reach that 41-degree benchmark.
George Hollingsworth and Dave Blenkhorn, the master tetherers on loan from the White Mountain Adaptive Ski School at Loon Mountain, N.H., would be taking us down the mountain. Curry would be riding on another bi-ski, to be near me if there was a problem.
We decided to leave one external battery for the ventilator with the chair lift operator at the bottom and one at the top. I would be going down the mountain on the ventilator’s internal battery, which was supposed to have 60 to 80 minutes of power.
The ventilator was taped down over my shins, the tubing was taped to the ventilator, and a blanket was taped over it all. My hands were taped into warm ski hats and then onto my lap. We were ready.
Dave skied me over to the chair lift and, without stopping the lift, he and George hauled the bi-ski onto the seat between them. I felt no fear on the chair lift, only wonder at finding myself soaring over the heads of skiers and snowboarders flying down the hill. At the top, the view of the White Mountains was stunning! We stopped to take pictures. Curry got in his bi-ski and we were off.
I was amazed by how fast and smoothly the bi-ski rode under Dave’s direction. We headed down Crawford’s Blaze, a tree-lined, winding run with breathtaking views of the mountains. My paralyzed body moved forward naturally into the turns. It felt exhilarating and strangely familiar.
As the grade got steeper, Dave crisscrossed the slope with shallower sweeps. At the end of each sweep was a jarring bump that threatened to dislodge my head.
Halfway down the run my ventilator alarm started sounding. The “battery low” warning was flashing! I couldn’t have been using the internal battery for more than 25 or 30 minutes. I’d never tested the ventilator battery past that warning.
Dave took a more direct line down the hill, which resulted in a few more bumps. Out popped my head! Three people converged on me, and within 30 seconds they had fashioned a chinstrap out of duct tape that attached to my headband. Thank God for duct tape!
Dave took a very direct line at the end that gave me an incredible rush. The only problem with our plan to have batteries at the top and bottom of the mountain was that the cable to attach it was left at the top! Dave and Sandy got me inside and Curry ran to the car for the power cord to plug the ventilator into the wall. As he plugged it in, I saw a warning I had never seen before: “Battery empty”!
We were later told by the respiratory people at Apria that the ventilator had to work harder at the top and bottom of those ranges, and therefore ran through its internal battery more quickly. Well, why didn’t they say so before! We were prepared for any eventuality, since I had my Ambu bag and suction machine with me.
Besides Dave, George, Cris and Sandy, many trained volunteers made my skiing dream come true. This program’s lifeblood are its volunteers and I can never thank them enough.
So, why did this Tennessee girl feel the need to make a pilgrimage to the White Mountains? Cris, who is also a minister, put it best in an invocation he gave at the annual Hartford Ski Spectacular in Breckinridge, Colo.
“It is our magic carpet ride. We all glide over frozen, sparkling crystals for the same reason, to be transported into another world. A place where the crippled dance, the lame walk and the blind see, where we may all, each and everyone, no one left behind, all together, mount up with wings like eagles and join the dance which has no end.”
Amen to that!
Erin Brady Worsham, 48, received an ALS diagnosis in 1994 and a tracheostomy in 1997. She’s an award-winning computer artist. For information about the Bretton Woods Adaptive Ski Program, call (603) 278-3398 or e-mail: firstname.lastname@example.org