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Thursday, December 22, 2016

Epic sail shows Ocean City woman that she can take on Parkinson’s and live on her own terms

December 21, 2016    By Karen Bender Special to The Gazette



Editor’s note: Karen Bender retired as an English teacher at Ocean City High School in 2012, more than a decade after she was diagnosed with Parkinson’s disease, after slightly less than 40 years teaching. She is married to Henry Bender, also a retired teacher. As Karen Oliphant, she served on the Ocean City Council, the second woman ever to be elected to the city’s governing body.
Back in 1996 I was introduced to sailing by my husband, Henry. We weren’t married then; we were dating, and that summer he took me to the South Pacific—my dream trip. I’d always wanted to visit Tahiti. We spent two weeks exploring the Society Islands by small plane and ferry before boarding the Alaska Eagle, a 65 foot sailboat in Bora Bora.
From there, we sailed through the Cook Islands to Pago Pago, American Samoa. It was a training sail offered by California’s Orange Coast College’s School of Sailing and Seamanship for those wishing to make ocean-going passages. Only experienced sailors were welcomed. Henry, who fit the bill, had tweaked my resume, but the captain soon discovered I was a novice. When he asked me in Bora Bora to remove the mooring line from the buoy and I looked to Henry for help, he knew something was up.
Since that trip, I’ve sailed a lot. Nowadays I need assistance climbing on and off a boat, and pulling sheet lines has gotten a lot harder. For me, life isn’t as carefree as it once was. It’s more ritualistic.
Instead of hopping out of bed each morning, I now sit up and wrestle with a bottle of spring water. My fine motor skills aren’t what they used to be. The twist-off cap is obstinate. Once I get it open, I down three capsules of Rytary and one capsule of Amantadine and then lie back down. I wait 20 minutes for the drugs to kick in so I can brush my teeth. Afterwards I dress and go downstairs.
Henry has coffee brewed by 7. Decaffeinated Hazelnut Crème. I fill my favorite mug, add a shot of half and half, and stir in some honey using a cinnamon stick. The mug’s a gift, one that I cherish. There’s an inscription on it that reminds me of who I am. "You’re the giggliest girl in the world," it says. I laugh every time I read it. Giggles is my nickname. I tell myself: Don’t stop laughing now just because you have Parkinson’s disease – a disorder of the central nervous system. Neurologists call it PD – a sobriquet perfect for the medical world. I don’t like it. It’s trite. Instead, I call it The Park. The most obvious symptoms include shaking, rigidity, and slow movement. Funny, I walk better backwards than forward. Too bad there isn’t a cure.
Yet, every day is a blessing. At 2 p.m. I pop more pills. I carry them in a tiny pill box. At 6, I take a third dose. The meds have side effects: melanoma, weight loss, hair loss, swollen ankles, swollen feet, leg rash, inflamed capillaries, trembling, and head bobbing. Picture Stevie Wonder singing For Once in My Life. Fortunately, my neurologist has corrected my Stevie Wonder imitation, and melanoma hasn’t reared its ugly head. The rest I just live with.
Henry’s my support mechanism – my caregiver. He helps me about whenever I experience “down time” – that time when the meds are wearing off. He’s helped me battle this ailment since I was first diagnosed in October of 2000, a year and six months after we married. Sometimes he gets frustrated, but never for long.
Since we’ve first dated, Henry’s longed to sail the Caribbean.
“When the time comes, we’ll island hop through retirement,” he’d say. I was game after my South Pacific venture.
Before we married, we bought a Bristol 30 – a vintage 1978 sloop – and named her Just Us. We found her in the Chesapeake, in Galesville, Md. Our plan: become sailing vagabonds. Once we finished our teaching careers at Ocean City High School we’d follow the sun.
But when The Park became a crew member that romantic notion changed.
Notice I said changed, not ended. Once my husband plans on doing something, he doesn’t quit. So in 2012, when he said “Let’s sail Just Us to Florida,” I knew he was itching to somehow revive our broken dream.
I had concerns. Back then I was popping different meds, not the time-release stuff I’m on now, and often they needed adjusting whenever my “down time” seemed eternal. I needed my neurologist nearby.
Henry, confident as ever, said, “You’ll be fine. We’ll motor-sail the ICW and stay in a marina every night.” The ICW is the Intracoastal Waterway, an intricate array of bays, rivers, canals, and sounds that provide a safe “inside” passage along the coastal United States. Many transient boaters use it instead of traveling “outside” in the ocean.
In late September 2013 we sailed Just Us from Ocean City to Georgetown Yacht Basin, located on the Sassafras River in Georgetown, Md., for a refit. The first leg – Ocean City to Cape May – our grandson, Carl Wanek, and our friend Brian Kolmer joined us. The day was delightful – sunny and breezy with calm seas. Next morning, though, was anything but pleasant. Weather had soured overnight, and outside Cape May Canal in the Delaware Bay the wind howled against an incoming tide, causing a vicious four-foot chop. Plowing through it was miserable.
Fifteen minutes out, an enormous snapper turtle appeared off our starboard quarter. I was all bundled up, steering. “Mr. Turtle, you’re having fun in these waves, but I’m not,” I said.
Suddenly, I felt a trembling inside. Not from fear or seasickness, but from The Park. When I saw two boats turn back, I floated the idea of doing the same to Henry. “No way, Babe. We’re riding the tide,” he said. “This bay will flatten out.” He was right. By the Salem nuclear plant there was barely a ripple. That night we tied up at Summit North Marina, seven miles inside the Chesapeake-Delaware Canal. The next day was a milk run to Georgetown. I never told Henry about my trembling.
The refit took a year. Running and standing rigging was replaced, the engine was fine-tuned, a self-furling head sail was installed, topside leaks were sealed, and the bottom of the hull was sanded and painted.
While work was being done, we split our time between Ocean City and Key West. Days seemed endless before we set sail, and often I’d think of that second leg to Georgetown and wonder: How will I deal with The Park on this adventure?
* * *
When we finally got underway for good, it was Friday, Sept. 19, 2014. This day we rode a 15 knot breeze into Annapolis. Several days later we crossed the bay and sojourned up the Miles River to St. Michaels. I could’ve spent a month poking around the upper Chesapeake eating blue claw crabs, but Henry wanted to press on. So from there we plotted a course to Solomons Island by the mouth of the Patuxent River on the bay’s western shore.
Leaving Harbour Inn Marina proved tricky. A blustery wind made maneuvering difficult and I felt bad I couldn’t help with the lines. Henry got us out without incident, and eight hours later we docked at Spring Cove Marina.
A onetime sleepy fishing village, Solomons Island is now a popular vacation spot for urbanites from Baltimore and Washington. We spent four nights here waiting out a raging northeaster.
This is where I took a nasty fall. We’d just returned to Just Us from visiting Calvert Marine Museum, and I needed to take my pills. Henry was below in the cabin by the chart table, and as I was climbing down the companionway to get them, I lost my grip on the hand rails. Henry caught me, but not before I slammed my left ankle into the galley. Wrapped in his arms, I laughingly said, “Let’s dance.” When he asked if I was OK, I told him I was.
Days later my ankle doubled in size and my shin turned deep purple, almost black. We were in Coinjock, NC when I thought I’d better see a doctor. Only a few days previous we’d been in Norfolk, and I was walking fine. According to our cruising guide the nearest hospital was in Belhaven, 85 miles south. All I could do was ice up my ankle.
It took two days to reach Belhaven. We crossed Albemarle Sound to Alligator River Marina where we docked for the night. My ankle was really hurting. Henry wanted me sitting with my leg up, but I insisted on doing my shifts at the helm. Next morning we ran down the Alligator/Pungo River Canal to Forrest River Marina.
Upon arrival, we learned that Belhaven’s hospital had shut down three months ago. But, there was a clinic a half mile away. The dock master provided directions and lent us his golf cart to get there. Dr. Day, the tending physician, examined me and said I needed to get into a hospital. The closest was 30 miles away.
Showing true Southern hospitality, Dr. Day offered Henry his car, but Henry declined. Darkness was falling, and we’d have to travel lots of back roads. An ambulance was called. Before it arrived, Henry went to our boat, got clothes and the rest of my meds. When he returned, I was strapped on a stretcher ready to ride.
By 11 p.m. I had a room at Beaufort County Hospital, in Washington, NC. Nurses rolled in a reclining chair for Henry, along with a pillow and blanket. Antibiotics were fed into me intravenously. X-rays showed my ankle wasn’t broken. An ultra-sound revealed no blood clots. Diagnosis: cellulitis. Two days later I was discharged.
Riding back to Just Us in the cab, I was full of smiles, relieved that our trip had not come to an abrupt end.
From then on I was much more cautious. So much so that whenever we stopped I’d only get off the boat if she was tied to a floating dock. No way was I scaling a ladder on a fixed dock. Not being able to get off the boat wasn’t too bad. Our head was fine—I just couldn’t enjoy a shower—and I’d prepare can soup and tuna fish sandwiches for meals. Henry would also wander off and bring back take-out meals from a local restaurant.
One particular time at the helm really boosted my confidence. We’d left Joyner Marina in Carolina Beach, NC, and I had brought us through Snows Cut to the Cape Fear River. The day was cloudy, rainy and the wind was barreling in against the river making a chop that was worse than that day on the Delaware Bay. I really thought Henry was going to take over. He didn’t. Without saying a word, he allowed me to read the chart myself and sail Just Us down the river around Southport to St. James Plantation Marina where we ducked in for two days to ride out heavy thunderstorms. Of course he put our boat into the slip, but I felt proud that he’d been so trusting.
The ICW route through the Low Country—South Carolina and Georgia—was sensuously beautiful. Rivers and creeks were fringed with marsh grass and maritime forests and birds chirped endlessly. Best of all were the schools of playful bottle-nose dolphin that cavorted by the mouths of the inlets and creeks. They’d come right up to our boat so close I could practically reach down and pet them. One I even made eye contact with, and I could have sworn he smiled at me.
Charleston was a blast. I popped my pills, and we celebrated Henry’s birthday by visiting Fort Sumter. Afterward we had birthday libations at the top of the Market Pavilion Hotel followed by a cheese dish at Vendue’s rooftop bar—wine doesn’t react with my meds, thank goodness, I just can’t over-indulge. We loved the town so much we rented a room at the Hilton and stayed a week. We toured Magnolia Plantation and Gardens, enjoyed a classic horse-drawn carriage ride through “Rainbow Row” and ate tons of shrimp and crab prepared a thousand different ways.
Hilton Head Island was delightful, too. When we pulled into Harbor Town Yacht Basin on Calibogue Sound, we received a free bottle of wine. Twelve miles long, five miles wide, Hilton Head is blessed with beautiful beaches and nature preserves. In one nearby pond we counted eight alligators.
We’d been told Georgia would be challenging in two places in particular: Hell Gate and Jekyll Creek. Because of the state’s poor financial budget dredging had been cut back; so, there were lots of hidden mud banks and stretches of skinny water. We didn’t encounter any problems.
Leaving Isle of Hope at statue mile marker 590—the ICW has mile markers posted, beginning with Mile Marker 0 in Norfolk, VA—we timed our passage through Hell Gate, a stretch of water connecting Little Ogeechee and Ogeechee Rivers, at high tide.
Halloween morning, we caught a rising tide through Jekyll Creek by Jekyll Island, and in the afternoon passed by St. Mary’s Inlet into Florida. We docked south of Fernandina Beach in Amelia Island Yacht Basin off Kingsley Creek. That evening a cold front blew in. Temperatures dipped into the 30s; winds gusted to 45 knots. We hunkered down for three days.
Navigating the Sunshine state proved easy. Only annoyance was the bridges. Our cruising guide listed 10 pages of them! Many were fixed with a 65-foot clearance; so, we could motor under them, but there were lots of swing and bascule bridges that only opened on limited schedules.
When we stopped in St. Augustine, America’s oldest city, Henry called a long-time friend from Ocean City—Johnny Pfister. Johnny came over to Camachee Cove Yacht Harbor where we’d docked and the two reminisced about sailing Johnny’s boat from Ft. Lauderdale to Ocean City, 35 years ago, with fellow Ocean City resident, Roy Zeyner. I’d never met Johnny until then, but we had something in common—he suffers from The Park, too. I felt bad hearing that he’d quit sailing, but he walks, runs, exercises, and drives a car—something I rarely do.
Johnny gave us a tour. Highlights included Flagler College, once a prestigious hotel built by oil magnate Henry Flagler; Lightner Museum, formerly Flagler’s Alcazar Hotel; and the old jail and gallows. We even drank from the Fountain of Youth, the legendary spring of immortality sought by conquistador Ponce de Leon.
Daytona Beach, home of the Daytona International Speedway, brought out the crazy in me. When I read in our guide about the Richard Petty Driving Experience, I had to sign us up. The morning we took a cab to the speedway, I popped an extra pill. No “down time” for this outing—a ride in a race car with a professional driver. We dressed in fire retardant suits, donned helmets, and climbed into separate stock-cars. Entrance was through the passenger window. “You like speed?” my driver asked. “You bet,” I said, and we zoomed off at a heart stopping 170 mph. Henry, who’s not a NASCAR fan, admitted it was great.
I’d never seen a manatee up close, but near Cape Canaveral in Titusville, we spotted lots of them around the municipal marina. Now endangered, their backs protruded above the surface like tiny islands. During the heyday of the space race Titusville was called “Space City” for obvious reasons, but because NASA has dialed back its programs, the town—which is the oldest on the Indian River— has reinvented itself as a tourism gateway.
Farther south, we met up with Petersburg residents, Bill and Barbara Pitt in Vero Beach. Barb, an acclaimed South Jersey artist enjoys painting here. While there they generously took us to dinner at their favorite artsy restaurant.
Nov, 13 we tied up at Bahia Mar Marina in Ft. Lauderdale, officially ending our venture. Our daughter, Nikki Keenan, her husband, John, and their two children, Maddie and John-John met us at the marina. They live in Boca Raton. Looking back, I’m so thankful Henry encouraged this trip because not only had it blessed me with a true sense of accomplishment—I had sailed JUST US over 1200 miles—but it made me realize I could go toe to toe with THE PARK. Oh sure, I fell once, shook at times, and wobbled now and then getting on and off the boat, but I kept smiling, kept laughing. I had kept the devil at bay—living life on my terms.
http://www.shorenewstoday.com/ocean_city/features/epic-sail-shows-ocean-city-woman-that-she-can-take/article_7341193d-325a-5c06-bb19-632fef861fa8.html

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