Es Vet Helfen

by Dean Kramer
March, 2005

There’s an old Yiddish expression, "Es vet helfen vi a toiten bahnkes." Roughly translated it says, “That’s about as helpful as giving medical treatment to a dead person.” Our own culture has some similarly sardonic phrases. The road to Hell is paved with good intentions is an example, as is the plaintive, "With friends like you, who needs enemies?" That last one, paraphrased, becomes the punch line of an old burlesque house joke: With friends like you, who needs enemas?

The point made by all of these sayings is often poignantly felt by people with disabilities, for, while most of us are grateful for help offered when we need it, sometimes help is simply not helpful.

When my sister, Karyn, and I were young we spent a week at the beach every summer. One year, the house my family rented was in a development where each dwelling had its own private dock on a lagoon. The lagoons were like the alleys behind urban row-homes only, in this case, the alleys were waterways. These watery alleys connected to a watery “main road,” a bay, and you could travel from alley to alley by boat.

My sister and I begged my parents to rent us a boat that year, and they got us a little Sunfish sailboat. All our friends’ families owned either sail or motor boats. The kids all went to sailing camps. My father's sole boating experience consisted of a trip overseas in a transport ship during WWII. He had no interest in water-bourne vessels after that. Karyn and I had never been in a boat at all, let alone a sailboat. But our friends assured us that sailing such a small craft was easy, and we were game to try.

At first it was easy. Our parents helped us step the mast and hoist the sail. We’d learned all the proper nautical terms (jibe-o and hard-a-lee, for instance, meant the boom was about to swing across the boat and knock you into the water unless you ducked). We sat on the boat holding the sail taut with a rope called the “sheet”and steering with a wooden rod called the “tiller.” Proudly, my little sister and I sailed up our alley toward the main road. There, we’d take a right turn, go two blocks, take another right, and arrive at the dock of our friends.

I will not detail the difficulties we encountered getting there except to say that sailboats, unlike bicycles, do not simply turn right. In order to turn them you need an entire lexicon of nautical terms clearly understood by all members of the crew. By the time we were positioned to sail into our friends’ alley we were mud-covered, soaking wet, mosquito-bitten, and we had added a whole new chapter to the annals of Sibling Discord.

But we pulled ourselves together physically and emotionally, if not spiritually, and sailed swiftly down the alley toward the dock. Our friends, having been alerted by phone to our arrival and unaware of the aforementioned difficulties, had been waiting expectantly for a great while. Now, children and parents ran out on the dock and waved happily as we sailed toward them. I made an expert approach and brought the boat smartly beside the dock which, it being low tide, was higher than Karyn’s chest. She balanced expertly on the boat’s deck and grabbed the edge of the dock as if she’d been doing it her whole life. And, because I continued to hold the sail expertly taut with the sheet, the boat kept right on going down the alley.

The smiling faces quickly changed to faces of surprise. As the boat continued moving forward, Karyn’s body began stretching, fingers clinging to the dock, toes clinging to the deck. “Love the sail! Love the sail!” I heard them shrieking. Well! I certainly did not love it at that moment. It was wrecking our Big Entrance. In my distress I had forgotten that “luff” was a nautical term for letting the wind out of the sail. The instant transformation of my friends’ faces from delight to horror, their waving arms while incomprehensibly yelling about love, and the sight of my sister now suspended horizontally between boat and dock had me suspended between fear for her and unbearable embarrassment over our situation.

As a result, I began laughing. I laughed so hard that I had to let go of the sheet which brought the boat to a stop allowing our friends’ parents to rescue my sister. The crisis was ended without injury and my friends and their parents began laughing, too. It was like the tag-end of a bad sit-com where everyone laughs idiotically as the credits roll. Everyone laughed except Karyn. I couldn’t understand how she couldn’t see the humor in that scene. I mean, people got paid money to write stuff like that, and here we were doing it in real life! Funny, right?

A few weeks ago I went on a cruise with Twink, my mom, my sister and her husband, Jim. We spent one of our days on a private beach owned by the cruise line. The reason I was able to join them on the beach is that there were beach wheelchairs available for disabled passengers. While the other three went on ahead, Twink and I visited the nurses’ hut where the chairs were kept. We negotiated the use of one for me. The beach wheelchair had to be pushed by a caregiver. I got in the chair and Twink began pushing. The chair had big balloon tires that did not roll as well on paved surfaces as those of an ordinary wheelchair.

The tires did not roll well on sand either, but they didn’t sink into it as regular wheelchair tires would have. Though we rolled easily down a steep hill onto the beach, on the flat poor Twink had to heave me along. I offered to get out and walk (“Don’t make our tired old mule haul this wagon up Pike’s Peak with me on it, Honey. I can walk beside it a while.”) But Twink insisted she was okay until she discovered that the chairs Karyn and Jim had reserved were way far down the beach. She went and got Jim who, steering the chair onto the firm sand at the water’s edge, trotted me happily to the area staked out for us all.

I had a great time. I swam in blue Caribbean water. I sank my feet into powdery Caribbean sand. Using a cane I’d brought with me, I made my way, very slowly and spastically to a pastel-painted Caribbean restroom. And, when my internal MS-symptom checker told me I’d had enough Caribbean sun, I decided to head back to the ship figuring to use the chair as a walker and return to the hut. Without me in it, how hard could that be?

I quickly discovered that I didn’t have the strength to push even the unoccupied chair back up the steep sandy hill. Twink came to help me. I pushed from behind the chair while she pulled from the front. Because the sun and my symptoms had combined to make me fairly useless from the waist down in the deep sand on the slope, we had to go more slowly than Twink might have preferred. Additionally, I couldn’t respond to her directions as quickly as she would have liked. As we struggled along on the verge of a writing new chapter in the annals of MS-Related Caregiver/Partner Discord, a man came by and asked if we needed help. Twink was happy to accept his help but I hesitated because, if he took the chair, what would I hold onto?

Before I could say, “No, thank you.” he grabbed the front of the chair and began backing quickly up the hill. I held the chair wanting to take steps with him but he was moving way too fast for me. “Please…” I bleated. Intent on trying to move my feet, I couldn’t really talk. And, suddenly, I found myself stretched horizontally, my hands clinging to the chair, my feet immobile in the sand. Somehow, just before I fell, I managed to bellow, ”Sir! Let go of the chair!” He was so startled by my tone of voice that he immediately stopped pulling and I was able to regain my balance without injury.

I tried to explain that I couldn’t keep up with him and needed the chair for support, but he, not interested in an explanation, made a quick apology and left. Twink was somewhat miffed with me for yelling at the man. Her point of view was that I’d been ungrateful and ungraceful in my ingratitude.

As she shared those thoughts with me I began laughing, a response never well-received by people who are scolding you. But remembering my sister’s position at the end of that long-ago sailing adventure I could not help myself. I laughed until I wept, and passersby paused to see if Twink needed help with me. For this time I was the only one laughing. It wasn’t like a sit-com. It was more like the ending of one of those dramatic, cop-lawyer-social worker shows where the good guys stand around looking intensely concerned while the handcuffed miscreant gives vent to a final burst of maniacally inappropriate glee. The laughter trails off as the screen fades to black and the credits roll.

That image, in turn, had me laughing so hard I had to make another trip to the pastel-painted Caribbean restroom. Certainly, the adage concerning the road to Hell and the Yiddish expression about help both came to mind. But as the sound of my relief echoed off the walls my most insightful thought was, “With friends like you, who needs catheters?”