Lost and Found in New England

I just had the most wonderful vacation – wonderful because of the time spent with family and friends, wonderful because of the beautiful scenery, wonderful despite all the challenges and problems.

That it was probably my last major excursion – definitely my last time traveling alone – made it very special and particularly memorable. That it was a bucket-list bonding trip with daughter Kay moved it beyond special, beyond memorable, to pretty darned near perfect.

Now, "perfect" when traveling with ALS is far different than "perfect" under other situations. With ALS, it means help from strangers at airports and on airplanes. It means carefully and successfully choosing foods that can be eaten with gimpy hands. It means easy walks instead of stimulating hikes. It means packing a ton of assistive accoutrements, like fat-handled silverware, a suction-cup shower safety bar, a portable raised toilet seat, leg braces, easy-on, easy-off clothing.

Above all, it means Kay.

I would not have taken this trip without her. It was her idea, months and months ago, to take a road trip to Maine: I would fly out to Western New York, where she lives, we'd jump in her car, and off we'd go. I could not have taken this trip without her. Besides being the world's best traveling buddy (oh, we do love the same things!), she was a kind, comforting, good-spirited companion and helper.

Even when I got us lost. Even when this damned disease made me short-tempered. Even when I was incapable, needy, and more than a little trying.  She took everything in stride, making it seem like the most natural thing in the world to wash my hair, help me on stairs, get me dressed, feed me when my hands gave out.

But this trip was not about my infirmities, and it certainly wasn't about turning my daughter into a home health care aide. It was about finding a new and special rapport with each other – which we did. It was about sharing a bond of love – which we did. It was about finding fun – which we did with gusto.

We found my friend Cynthia and her colorful New Hampshire house, complete with in-the-trees sleeping porch and Napa Valley kitchen. We found "Antique Alley" and crafts cooperatives. We found great restaurants. We found towns full of history, scenery, and… shopping! We found some very strange lodging (do not, repeat not, believe all the pictures you see on Internet travel sites). We found spectacular sunsets. We found lobster – steamed, boiled, broiled, whole, in pieces, in sauces, soups, rolls, on pasta, on salads: any way it can be eaten, we ate it – and I give a hearty thank you to those restaurants that served nice big chunks of lobster… out of the shell.

We found Acadia National Park, a place of true beauty and, despite its busy-ness, serenity. We found the free (and green!) shuttle buses that take you nearly anywhere in the Mount Desert Island portion of the park. We found the little boat that takes you to islands and inlets, a lighthouse and an osprey nest (and with great people to help me in and out). We found Jordan Pond, Mount Cadillac, and the famous Acadia pink rocks that look just like the ones I painted from imagination months and months ago. We found that I rate a free National Parks pass for the handicapped – now there's an ALS silver lining. We found that we could have spent several more days, even weeks, exploring this lovely park.

We found Saratoga Springs NY and the opening day of horse racing – on the hottest, most humid day of the year. We found ourselves wearing our fancy hats anyway. A bucket list is a bucket list.

And I found wonderful, valuable, important time on either end of the road trip to spend with my delightful grandchildren and my very special in-laws. Not enough time, true, but wonderful, valuable, and important nonetheless.

So that's what was found. What was lost? One pair sunglasses. One stick-on grab bar. $27 at the track. More of my strength. More of my dexterity.  A whole lot of my personal inhibitions. Some of my fears. Some of my plans for the future. Some of my bucket list goals – a few because now they've been fulfilled, a few because I know that at this stage of the ALS game they never will.

Some of the "lost's "are inconsequential. Some make me sad. Some make me proud. All are trivial when compared with what I found on this trip: adventure, beauty, memories, hope… and love.