Saturday, July 31, 2010
The bike path is a most pleasant place to spend an hour or two. It provides some wonderful views of the lake, some quiet time in the woods and a short jaunt by the marina. As I sped along at nearly three miles an hour, I came upon another man in wheelchair.
"What's your disability?" he asked.
"MS," I said.
He looked to be about my age. He said he had three adult children: one a doctor, one working with the Geneva schools and the other doing something I don't remember. Then we talked about MS and when we were diagnosed. He had been diagnosed 36 years ago.
That was another reminder of how fortunate I have been. For no other reason than because I can remember having some unusual back pains while we were living on Walnut Blvd., I date the onset of my MS from late 1983 or early 1984. At the time, I assumed the problem was caused by sleeping on a too-soft mattress. The pains disappeared after a month or two and never returned. Sometime after we moved to Myrtle Ave. in June 1984, I began having occasional respiratory problems. What ever the problem was, it came and went. I did seek medical advice and was given a prescription for an inhaler. That worked well, but so did Primatene Mist, so I eventually quit going to the doctor. And every once in a while my legs would feel funny; tired and tingly. But I found it would often go away if I concentrated on walking, putting one foot in front of the other and not worrying about the tingling. If that didn't work, sitting down for a few minutes always did.
It wasn't until March 2003 that MS began to intrude on my life. For several months, I was tired, more tired than I had ever been. I worried that I was either getting old or lazy. That summer, Star Beacon sports editor Don McCormack allowed me to cut back a little, and that helped a great deal. But the difficulties with my legs got worse and became more frequent. By the fall of 2005, I was limping all the time, and people kept telling me to see a doctor, which I did. In October 2006 the doctors at the Cleveland Clinic decided that my problems were caused by MS.
The point of all this is: While MS might have been lurking inside me for 20 years, it didn't become a problem worthy of note until after Russ and Beth had grown up. I got to play ball with them and rake leaves in the fall and have Beth jump into the pile and rough house with them and chase Russ around Lake Shore Park and enjoy every minute of their childhoods. There isn't a good time to have MS, but some times are better than others, and MS caught up with me at one of those better times.
Friday, July 23, 2010
No one gets into the supermarket checkout line expecting an uplifting experience. Then again, except for me, no one expects to be reduced to a cowering, simpering, drooling fool while waiting to pay for his groceries.
Supermarkets, for the most part, are pleasant places. But when I approach the checkout line, my stomach churns, my hands get clammy and my brow spews beads of sweat. I move slowly in the line, forcing myself forward and hoping I don’t break down and run screaming from the store. The cash register has nothing to do with this. The problem is the magazine racks, that canyon of frightening, emotionally paralyzing memories I must pass through on my way to the cashier.
We – Debbie, Russ, Beth and I – were a typical young family of the late seventies and early eighties. Fridays, after reclaiming the kids from day care, we’d dine on fast food and go to the grocery store. Every week, the final item in the cart was a women’s magazine Debbie snagged from the rack as we waited to checkout.
Some of the women’s magazines looked interesting. They were the ones with pictures of cleavage on the cover and blurbs for articles such as “What your man really wants: 26 sure-fire ways to please him in bed.” But Debbie preferred the magazines for aspiring frumps.
Their publications were terribly dull, but the editors and publishers of the hausfrau magazines were marketing geniuses. Every issue was packed with articles on food and diets. The woman depressed and frustrated by her inability to drop either inches or pounds on the “Lose a pound a day watching TV” diet featured in the April issue was an easy target for the picture of a seven-layer cake and the promise of “A month’s worth of sinfully rich desserts” on the May cover.
On a more practical level, the magazines offered ideas on how a working mother could be more efficient in the kitchen. The theory was, a big meal on Sunday would provide quick, easy-to-prepare meals the rest of the week through the judicious use of leftovers. All the necessary information, from the shopping list to the recipes for the feast on Sunday, the casserole on Wednesday, the cold sandwiches on Saturday, and all the dinners in between, was there.
Although they looked good on glossy paper, the suggestions for saving time never worked in our kitchen. When the Sunday meal was as delicious as the hype, there weren’t any leftovers. But if the Sunday meal fell short of expectations, the leftovers cluttered the refrigerator until the life forms that sprouted from them had evolved to the point where they complained if we didn’t knock before opening the refrigerator.
Between the stories on what to eat and how to take off the resulting tonnage, the editors inserted medical articles designed to keep mothers in perpetual fear. Statistics available elsewhere indicated a child born in the United States had a life expectancy approaching eighty years. The truth according to the magazines, however, was that a child could expect to live until his next sneeze. “Just a cold or deadly medical mystery?” the blurb on the cover asked. Quickly turning to Page 34, the young mother found the answer. And it wasn’t hopeful.
Had the magazines stopped there, I would have merely snickered at them. But somewhere in the middle of every issue lurked a compatibility test. The test, developed by a psychologist of questionable repute and in dire need of money, took the young mother’s mind off her child’s imminent demise by warning her that her marriage, no matter how perfect it seemed, was rushing toward a bitter, ugly end.
Any time I was happily engaged in doing nothing, Debbie would say, “Take this test with me.” Lacking a reasonable excuse not to, I did. Most of the tests were multiple-choice, and calling on my experience from a psychology class I’d taken in college, I selected what I deemed the most nonsensical answer to each question. The result was, I ranked among the great husbands of all time.
One day, however, I agreed to take a test, which, unbeknownst to me until it was too late, asked more open-ended questions. I held my own at first. Using a variation of my multiple-choice technique, I gave answers that were the opposite of the responses a reasonably intelligent person not corrupted by psychology would give. But it was hard work and I had difficulty maintaining my concentration.
“OK, this is question 20. Only five more to go,” she said. “What is your greatest sexual fantasy?’
“To make love to a woman who weighs less than I do,” I said.
Oh, the rage, the anger, the fury that hell hath none like. The marriage eventually ended. My fear of the magazine rack by the checkout line has not.
Wednesday morning, I went to Mike’s Farm Market. Nothing unusual about that: when the weather is good, I’ll go there once or twice a week to pick up a few things. It’s a nice place with an extremely helpful and friendly staff, and it is well stocked with things I like. I enjoy going to Mike’s. And it’s handy, about a half mile from home – an easy trip in my wheelchair.
When I got back from Mike’s, I realized just how handy it is.
Somewhere on the Internet that day, I discovered that Sunday will mark the 20th anniversary of the Americans with Disabilities Act. On July 26, 1990, President George H. W. Bush put his signature on Public Law 336 of the 101st Congress. As the website of the Small Business Administration (www.sba.gov/ada/index.html) puts it, “The ADA prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, State and local government services, public accommodations, commercial facilities, and transportation. It also mandates the establishment of TDD/telephone relay services.”
Although I was working for the Ashtabula County Board of Mental Retardation and Developmental Disabilities in 1990 and was aware of some of the potential benefits for the people I was working with, I didn’t pay much attention to the law. The truth is, I still don’t pay much attention to the law. At the time the ADA became law, it didn’t affect my life, and I was confident it never would. When, a few years ago, I became a beneficiary of the law, so many things had been made accessible that I was more apt to curse the places that weren’t than give thanks for the places that were.
That’s human nature, I suppose. But the discovery that the ADA is about to turn 20 gave me cause to pause and ponder. For one thing, if getting around a quarter of a century ago had been the challenge for me that it is now, I wouldn’t have gone to Mike’s on Wednesday. Without the ramped sidewalks at the intersections, I could not have made the trip in my wheelchair.
Getting out of the house, seeing people and being useful in some small way does wonders for the soul. The ADA can’t make me as independent as I’d like to be, but it does allow me to be more independent than I otherwise would be. When the need arises and the weather permits, I’m able to go to Mike’s, CVS, the shops in the Edgewood Plaza or cross the viaduct and head toward town. And on a warm summer evening, Nancy and I can walk – OK, technically, she’s the sole walker – to Diary Queen.
A ramped sidewalk is such a little thing, something you hardly notice until you need it. When you do, it’s the most welcome sight in the world.
Monday, July 12, 2010
Our first stop was Sackets Harbor, NY, in the 1,000 Islands area of the St. Lawrence River. There, on a beautiful Saturday afternoon, we took a cruise to the Singer and Boldt castles. The castles were the summer homes of the rich and famous of the late 19th and early 20th centuries, lasting testimonies to their wealth and egos. Still impressive after all these years, the castles were enchanting stops on a wonderfully relaxing cruise on the St. Lawrence.
There were quite a number of people in and around Sackets Harbor who appeared to be from India, Pakistan and other places in that part of the world. Many of the women wore saris, and the snippets of conversation I caught as they passed by were all in heavily accented English or in languages I didn't understand. But, as we were waiting to get off the boat at the end of the cruise, a family of four who looked like they might be there on holiday from the sub-continent, walked by us. As they made their way to the exit, the older sister, maybe 10 or 12, whispered something to her younger sister, who was maybe 7 or 8. The younger girl immediately turned around and told the older girl in perfect Valley Girl English, "I am so like not going to do that." Apparently, they were neither tourists from an exotic land nor recent immigrants.
Then it was on to Lake Placid. There, we toured parts of the Adirondacks by air. Of course, it took a concerted effort by Nancy and the pilot to get me into the one-engine airplane. But once they got me in, we soared. Soaring that was interrupted now and then with bumping around on the air currents, but the view was terrific; in addition to the mountains, the pilot pointed out some of the structures that were used in the 1980 Winter Olympics - ski trails, ski jumps, bobsled courses and the like.
Then we took to the water again and cruised Lake Placid. There are no castles along the shores of Lake Placid or on the islands in the lake. There are, however, camps. Each camp consists of one or more lavish homes, built at great expense by people who might occupy them for a week or two in the summer and then leave them in the hands of the hired help for the other 50 or 51 weeks of the year.
We also made the trek to the top of Whiteface Mountain, the tallest peak in the Adirondacks. We drove part way up the mountain, where Mary and I transferred to an elevator to the peak, and Nancy and Ron walked to the top. If I recall correctly, the man at the controls said the elevator rose the equivalent of 28 or 29 stories. The elevator was located at the end of a dank, damp, dark tunnel, but the view at the top was magnificent.
On the Fourth, we went into the town of Lake Placid to watch the fireworks over Mirror Lake. Why the municipality of Lake Placid is located on the banks of Mirror Lake is beyond me, but it was a wonderful spot from which to watch the pyrotechnics. As we waited for the sun to go down, a local radio station was broadcasting live from the scene. Part of the radio station's build up to the main event was a quiz, and Nancy won a prize for knowing that 56 men signed the Declaration of Independence.
From Lake Placid, we headed to New Hampshire. New Hampshire and much of upstate New York, at least in the areas we visited, look a lot like West Virginia without the obvious signs of poverty. And while we were there, it felt like Alabama, with highs near 100 and relative humidity readings near 100 percent. New Hampshire abounds in railroad lines that once hauled freight and passengers and now only haul tourists. We took two train rides; one from North Conway and the other around Lake Winnipesaukee. Both rides were very enjoyable. On the trip from North Conway went through the woods and there were several clearings that opened up to great views. The other trip skirted the edge of the lake and we could see the vacationers frolicking in the water or on the beaches. No matter how hard I try, though, I can't think of Lake Winnepesaukee without thinking of What About Bob. I spent much of that trip trying to stop myself from laughing.
We drove to the top of Mt. Washington, the highest mountain on the East Coach and said to have the world's worst weather and the place where the world's highest recorded winds were recorded. The narrow, winding road to the top provided a few thrills of its own. There was cold, wind and fog at the top. But several times the wind blew the fog out of the way, momentarily revealing beautiful vistas.
The other scenic highlight in New Hampshire was Sabbaday Falls. The name has something to do with workers in the area not wishing to work on the Sabbath. It was the only time during my trip that the electric wheelchair was pressed into service - most of buildings in the areas we visited are older and wheelchair accessibility is far from universal. Anyway, as we made our way up to the falls, a woman stopped and said what a blessing it was that I was able to be out in such a beautiful place. The power wheelchair is a blessing, of course, but it's a bigger blessing that Nancy is willing to push me around in the manual wheelchair and struggle to get me into, out of and around places that weren't designed with wheelchairs in mind. I am a fortunate person.
While we were in New Hampshire, Nancy and Ron climbed Mt. Washington, and we stopped in New York on our way back, where they spent a day whitewater rafting in the Hudson. So you see, a good time was had by all, at least until the trailer met the toe.
Thursday, July 1, 2010
* Officers apprehended a fuzzy black dog on West Main Street on Thursday.
* Someone left a pink bicycle on the sidewalk at the Redi-Go convenience store on Thursday.
* A concerned citizen reported Friday that a Surry Lane streetlight stays on all day and all night.
* Employees at the Circle K convenience store on South Broadway reported a rude, intoxicated customer at the store on Friday.
* Young adults driving recklessly down Burrow Street on Friday stopped to fight, a resident reported, though officers were unable to locate the suspects.
* Teenagers reported they gave a Geneva man money to "hold" and money to purchase cigarettes with on Saturday, but the man allegedly pocketed the money. Officers told the man it is illegal to purchase tobacco products for minors and made the man return the money to the teens.
* Employees at the Circle K convenience store on South Broadway called police after an intoxicated man tried to buy beer Sunday and passed out while at the store. The man allegedly came to and tried to drive away.
All this leaves me wondering if the intoxicated man who passed out in Circle K Sunday was also the rude, intoxicated man who stopped by Thursday. And isn't a good thing that the young adults who were driving recklessly stopped to fight? Shouldn't they be commended for pulling over and settling their differences without endangering other drivers? And what about those teenagers? Did they ever get their cigarettes?
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