Reborn on the Fourth of July

For author, who has ALS, backcountry access is true independence

By Mike Hirsch

My day of independence unfolded at dawn.

My eyes popped open at 4:18 a.m. on the Fourth of July. 

It was go time. 

I had slept in my wheelchair in the Red Fox lean-to at John Dillon Park—a first-in-the-nation camp designed to help people with disabilities enjoy a wilderness experience. 

I powered up my chair, switched on its headlights, steered down the ramp from the lean-to and crept away from our campsite. My 388-pound chair crunched along a gravel path, rattled the sleeping wooden boards of a long bridge over marshland and rumbled onto a fishing dock just before 5 a.m.

Mist danced over Grampus Lake, which was a study in grays. A bullfrog croaked its baritone song. The crescent moon shone in the sky.

The lake, woods and clouds transformed into blues—from cerulean to azure to dark denim. A blue jay screeched. The mist lifted.

The colors shifted again as the sun rose above a bank of clouds, adding shades of marigold, squash and bronze. 

I was overcome as I sat on the dock, watching the scene mutate again, with dramatic splashes of light and shade as seen in clouds painted by Dutch masters.

I had been excited for this very moment since I submitted our reservations to the park in the spring. I just didn’t understand exactly why.

The significance of this outing dawned on me at 5:39 a.m. on July Fourth. 

For two years, a degenerative muscle disease had taken away my freedoms. Like a relentless thief in the night, ALS, known as Lou Gehrig’s disease, had stolen my ability to climb Adirondack mountains, bike through the Wilmington Notch and explore lakes by kayak.

In recent months, it has taken away my capacity to walk more than a couple of steps, cut my food or type with more than two fingers. Eventually it will steal my ability to talk and, well, breathe.

I am today more reliant on others than I have been in 58 years, since I was a toddler.

As I sat on the Grampus Lake dock, I realized I needed this experience.

I needed to feel, once again, the simple joy of independence.

It stirred a long-ago memory—the first time I remember watching the sun rise. My parents had rented a cottage on the shore of Lake Keuka in the Finger Lakes. My brother and I had slept on the front porch, sharing a double bed. I woke groggily to pull the blankets higher against the cold early morning air. The scene just beyond the dock startled me. Oranges and reds in the sky were reflected in the imperfect mirror of the lake. 

It was the most stunning thing I had ever seen.

Part of my exhilaration, I realized even then, was the thrill of freedom. As the youngest of four kids, I had little say in what we did and when we did it. 

But here … here I could prop up my pillow, gape at this miracle and focus on the sounds of life on the lake—the waves lapping and the putt-putts of the first fishermen. And when the show was over, I could turn back on my side, pull up the blankets and fall fast asleep.

At Grampus Lake, the show had also ended. I retraced my path and drove up the ramp to Red Fox lean-to. My wife was fast asleep, as were our oldest daughter and son-in-law in the nearby Black Bear lean-to. I pushed buttons to lie flat in my wheelchair, pulled my blankets from the floor and fell fast asleep.

The day started anew with the crackle and pop of a fire at Black Bear lean-to. I found Emily and Erick cooking eggs and bacon over the flames at the ADA-compliant fire pits with swing-away grills.

I later wheeled miles through woods on the accessible trails, and drove up a ramp onto the camp’s pontoon boat for a ride around the lake. We heard that nearby Long Lake put on one of the best Fourth of July fireworks shows in the Adirondacks.

After a supper of apples, sausage and leeks, the family headed to our accessible SUV, then bounced along John Dillon Park’s 2-mile access road, turned south on Route 30 and drove into Long Lake.

Everyone and their sister was in town, eating dinner at restaurants, carrying chairs to the town beach, positioning their boats for fireworks viewing and listening to classic rock and country performed by Grit and Grace.

Fireworks exploded over the lake. The mountains volleyed back an echo of each burst. The finale blasted away in a grand manner. 

Back at Red Fox lean-to, I lay back as I readied for sleep and reflected on my day of independence. It started with a sunrise. It ended with the bang of fireworks.

Could it have been any better?

Just then a loon yodeled in the dark.

Ahhhhhh.

Mike Hirsch is opinion editor of The Morning Call newspaper in Allentown, Pennsylvania. He and his wife Melanie spend summers at their Adirondack camp in Wilmington.

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