Australia

In March of 2008 Laura and I had the extraordinary opportunity to travel to Australia. She was going there on business as the result of a work award that included the company of a traveling companion—me! Now, one does not travel for 24+ hours in the air to spend a day in meetings and a long weekend sightseeing. We arranged for an 18 day tour of the country that we could pick up with in Sydney after Laura’s meetings were done. As with all travel, I spent a fair amount of time researching and planning around mobility issues.

I decided to take my own travel wheelchair as opposed to renting something in-country. At the time I was using the Invacare At’m power wheelchair. This device served me well for many years despite being somewhat underpowered and a problematic friction drive system with capstans that were constantly wearing down. It had the advantage of being light, and easy to assemble and break down. I called it my flying lawn chair. I have since moved to a Pride Go Go 3-wheel travel scooter that better suits my needs, but that is another story.

The first hurdle was power. It took a bit of careful research, but it was soon obvious that Invacare had no 220 volt recharger for the At’m battery, and that my 110 volt recharger would quickly burn out the standard converters one could easily find in hardware and electronics stores. To the Internet for research. A phone call and a few mouse clicks brought an appropriately rated converter to my door just in time for the trip. It was the heaviest item in the suitcase. The next hurdle was Qantas Airlines.

I never had a problem traveling domestically with the At’m. There were always perfunctory questions about whether the device’s batteries were wet or dry, but the chair routinely seemed to go from the airport gate to wherever in the airplane US carriers carefully stow our power chairs. When we arrived at our destination, the chair was either waiting for me when I deplaned, or in the special handling area of baggage claim. Qantas employees were just as helpful and attentive as employees of domestic airlines, but seemed to have a special obsession with exposed wires and electrical connections, regardless of the presence or absence of electricity. The result of this obsession, no doubt part of their training, was seemingly massive quantities of packing tape applied to the least robust parts of the chair’s electrical system. This tape then had to be carefully and gently removed at the terminus of each of the 8+ flights we took during our stay. Most of the time this worked out okay. Occasionally wires were pulled out of connections and had to be jury-rigged, but when we got to Melbourne the electrical system had had enough, and the circuit breaker gave up the ghost. I was advised against my first inclination, which was just to rewire the failed breaker out of the circuit, so I began to research getting it repaired. Laura arranged for a loaner wheelchair (no power) from the hotel.

On the tour bus the next morning, and working through the time difference, I made a few phone calls while the group enjoyed a park and historic religious site. A call to the NJ vendor who sold me the chair and serviced it got me the Invacare Australia phone number. They in turn got me to Mobile Wheelchair Repair outside of Melbourne. I called, told them what I needed. The chair had been left with the concierge at the hotel, needed repair—probably a circuit breaker of the proper amperage, and we were leaving Melbourne early the next morning. They couldn’t exactly match the circuit breaker, but we settled on one at a slightly higher rating, and I gave them my credit card number. They would send someone out to the hotel. The group returned to the bus just as I was reading my credit card number over my cell phone. Several of them took out pens and paper, but they must have been teasing me; no additional charges showed up on the card. We went on to our next stop, Victoria Market.

Victoria Market in Melbourne is a bustling labyrinth of stores, malls and stalls, indoors and out, selling everything from kangaroo meat to fine art. It is in a fairly level part of the city, so the wheelchair would have been fairly easy for Laura to push, if the tires had been properly inflated—they were not. We were all on our own to shop and eat lunch. Our first priority was looking for an air pump. We approached one of the ubiquitous security personnel (dressed in a bright yellow vest, if I remember), and asked where we might find a service station or bicycle shop. He directed us to a motorcycle store around two blocks away.

The young man who greeted us when we walked in was a little confused at our request at first, but quickly invited us to the back of the store where he was able to fill our tires. Twenty minutes later we were still chatting about our trip, places he has visited in Australia, places on our itinerary he had not yet been, and his trip to the United States. He had been to the US a few years before, seen NY and a couple of other cities, and traveled the fabled Route 66 across a large stretch of the West and Southwest. We then left with expressions of profound thanks, and navigated much more easily through the market, picking up lunch along the way. In an 18-day pre-packaged trip with a tour guide, the thing that most obviously lacking is any contact with real people not connected with the tourist trade. Our twenty minute chat in the motorcycle store stands out as a highlight of a trip replete with interesting history, not-to-miss landmarks and awesome natural beauty.

After lunch and shopping we returned to our hotel to find my wheelchair fully repaired and sitting in our hotel room. The same repair would have taken a minimum of two weeks in NJ.

Peticha

It was a minor incident in the great scheme of things. But, then again, “Does a butterfly flapping its wings . . .”

During the High Holiday services (and all other services for that matter), congregants are honored by being asked to open (peticha) and close (segura) the Holy Ark (where the Torahs are kept). This is done during the Torah Service, and many more times during the service where centuries of Rabbinic thought has gone into deciding during which prayers the Torah’s presence is required. The congregation stands while the Ark is open.

I missed my peticha on Kol Nidre.

In our synagogue, past presidents and officers get the petichas on Kol Nidre evening—usually the best attended service of the year. This peticha was to be with my wife Laura with whom I served three years as co-president of the synagogue and our dear friends Art and Patty Werschulz—Patty served as president before we did. A gabbai (beadle, shammash, sexton) gives you ample warning of when your honor will be, and you do your best to be on the bimah (elevated area or platform at the front of the sanctuary) to take your honor. Art and Laura sing in the choir and were already up on the bimah.

Several things conspired to keep me from ascending the bimah in time:

1. The gabbai told me to go up after the previous honorees came down, but failed to realize that this ark opening comes immediately after the previous ark closing
2. I have multiple sclerosis and use a walker to assist my slow ambulation; it takes me extra time to get anywhere, especially up steps in front of hundreds of people
3. The Rabbi called for the opening of the Ark while I was still en route
4. The Cantor, whose personal religious practice does not permit him to use voice amplification on Shabbat or Holidays, had set up with a secondary lectern that had him standing where my walker needed to go if I ascended the nearer part of the bimah. I would need to cross to the far side of the bimah to use the handrail there.
5. Neither my wife nor my friends signaled the Rabbi for a delay long enough to get me up on the bimah. This is a good thing, because the spectacle of delaying the service while I clanked up the stairs with everyone waiting and watching would have been more mortifying than what happened, leaving me standing at the foot of the bimah steps, forlornly leaning on my walker while the service continued apace.

I usually don’t let such things bother me. My evening was ruined. I paid less attention than usual to the ritual, the people, or the higher meaning of the service. I’m not big on allegory anyhow, but my sour mood precluded anything but self-indulgent rehashing of the incident.

I woke up in the dark hours of the next morning with little enthusiasm about going to synagogue. There were plenty of people to blame for my missing my peticha and my resultant snarly attitude. My wife, my friends, the gabbai, Rabbi and Cantor had all had a hand in my embarrassment. Laura got up to go to Shul, dressed and left the house while I lay there reveling in my resentment. I was well on my way to sinking into a blue funk, which history demonstrates takes me days to shake. And so long as I was assigning blame, the real problem was my MS!

No! I don’t go there. I never give in to blaming the disease. It is a core article of faith with me that I will never willingly cede one dyne of power to the MS. Reevaluation. My problems are my responsibility; not my fault, but my responsibility nonetheless.

I did not make it up on the bimah for my peticha. I have had MS for over 35 years—it is not something new. For everything I do I know I must have a strategy and a plan. The power to plan ahead belongs to me. I employ the foresight to anticipate my needs every day, and get better at it all the time. I own the power to control my circumstances, but I must not forget to use it. None of the people I blamed for this incident have an obligation to plan for my needs, nor do they have the insight to completely grasp all that entails (although Laura is pretty damn good at it most of the time). My brother Larry tells me that I have every right to be mad; if they give you an honor, they should see to it that you receive the honor. He’s right, of course. But I cannot afford the luxury of being mad. I own the problem, and am completely responsible for the result. I take back the power.

I don’t know how this works, but I get up, dress, and go to synagogue feeling empowered. I never reject a hand proffered in help, but I cannot plan on it

It would be nice, though, if the bimah were a little easier to navigate.

The Hairy Hand

Many years ago, when I worked at AT&T, I attended one of the many seminars or training opportunities AT&T was wont to provide. The myriad training groups at AT&T offered a wide range of professional development and charm school classes, the latter having more to do people skills and management style. During this class, the instructor told the following charming parable to illustrate the somewhat subversive tactics a professional might use to keep control of a project despite management attempts to help. The message is to not give someone else a decision to make, unless you already know the outcome. I’m sure Scott Adams could summarize it in four panels.

The Hairy Hand

Our probably apocryphal tale begins when an AT&T vice president moves his entire organization to a new building in NJ. It is a typical AT&T building of the 1980s, with an airy, inviting atrium surrounded by four stories of offices and conference rooms. The VP, with management’s excruciating attention to detail, especially when showcasing his building, decided that a two-story wall in the atrium needed a mural to enhance the feeling of welcome for visiting AT&T and customer VIPs. After much research by his staff, and requisite meetings, he hired an accomplished local artist to execute his vision of a mural. The artist, after carefully listening to the VPs vision of a summer street scene from a typical Jersey Shore town, created some concept sketches and got approval to start work.

From the day our artist and his assistant unpacked their brushes and laid their first drop cloth, they knew they could expect an afternoon visit from the VP. He would spend up to ½ hour each day observing the artist’s progress, and inevitably conclude by offering up a few suggestions about content, style or color. After enduring this daily visitation for a week, the artist approached the VP.

“Look,” said the artist, “we really appreciate the time you are taking from your busy schedule, and we’re honored by the importance you seem to be placing on our work. However, it is really disconcerting, and frankly disruptive to the artistic process for us to have you, and the other employees who have taken an interest in our work, looking over our shoulders. I’m sure you would find it equally unsettling to have a large audience in your office all day long. I’ll tell you what. Let us put up a tarp so we can work in privacy, and before we unveil it next month, we’ll give you a private showing. Then you can look at our completed work, and we can take all your well considered suggestions for changes and enhancements at one time.” Reluctantly seeing the wisdom of this approach, the VP agreed with this course.

The following month, as promised, the artist led the VP behind the tarp to show him the finished work. The artist and his assistant had been very productive carrying out their craft away from prying eyes. “I am duly impressed,” praised the VP. “The effect is just what I’d hoped for, and you’ve done an excellent job melding your work with the surrounding atrium. Just one thing,” he said focusing on one man strolling past a café in a corner of the mural. “Isn’t the back of that man’s hand rather hairy?” “Hmmm,” considered the artist. “I think you’re right sir. I’ll correct that before tomorrow’s unveiling.”

Once the happy VP left the atrium, the assistant addressed the artist. “Sam, he’s right. That man’s hand is quite hairy. It’s not at all like you to paint something like that, let alone not correct it!” “Well,” intoned the artist, “once I’d told him that I’d take his suggestions before we showed the work to his employees, I wasn’t about to take the chance that he’d ask me to change any part of this painting that represents my artistic vision or hard work. It is a great lesson to learn—remember to always leave them with a hairy hand.”

Aaron Cohen

August 28, 2009

Don't Sell Guns in School

It started out as a rant. This story has been told and retold in our family for many years, and the time has come to write it down while the images and details of the event remain vivid.

Picture the early morning bedroom of two working parents of three small children. The radio blares over the shower’s white noise. The seemingly mandatory periodic news interruption of the usual musical accompaniment of our morning ablutions coincides with the end of the second parental shower. The children have been awakened in the next rooms, but are only beginning to stir.

“In other news, two Morris Township teenagers, 16 and 17 years old have been arrested for selling guns at Morris High School. The boys’ names have been withheld because of their age. The guns seem to have come . . .”

“What were they thinking?” Laura screams at the radio. Rants happen, despite the inconvenient, busy time of day. Sometimes you just need to get it out of your system. The radio, used to being yelled at, resumed the music programming we both really wanted to hear.

“What made them think it was a good idea to sell guns in school?” Laura continues at high volume.

“Who told them it was OK to sell guns in school?” Crescendo. “Didn’t their mothers ever tell them. ‘Don’t sell guns in school!’?”

With that, our still sleepy, bleary-eyed, nine year old daughter wanders through the bedroom door. Laura turns around and lectures sternly, “Sarah, don’t sell guns in school!”

“OK Mom, but why are you telling me this?”

“Some children in Morris County were arrested for selling guns in school. If you are ever arrested for selling a gun in school, and the police ask you, ‘Didn’t your mother ever tell you not to sell guns in school!?’ you can tell them, ‘As a matter of fact, my mother did her job and DID tell me never to sell guns in school’” “Now go get dressed.”

Bemused, but wise to her parents’ various quirks, as nine year olds tend to be, she gets a hug and goes back to her room to select her outfit for the day.

After packing the 9 year old and 6 year old off to school, taking the one year old to day care and driving to work, it occurred to each of us that there were many things we needed to teach our children explicitly. It was not enough to assume that general good values common sense would not suffice. The daily news broadcasts and newspapers provided a wealth of teaching opportunities. It’s not enough to ‘tsk tsk’ the missteps of well-reared children from good families. It is necessary to tell your children explicitly, “Don’t sell guns in school.”

Swamp Incident

Swamp Incident

The most exciting event of our recent trip to Canada’s Maritime Provinces (7/17 – 7/26/09), was during our side trip to Sackville, NB on our way from Moncton, NB to PEI. Laura had found the Sackville Waterfowl Park (http://www.sackville.com/visit/waterfowl/), which is a lovely pond/wetlands area with well-groomed trails and excellently maintained boardwalks. There are few, if any, barriers to handicapped access, and I set off merrily on my scooter to explore the park.

It was Monday, around 10:00 AM. There were relatively few people enjoying the park, including a fair number joggers/runners. If I ran, I would definitely choose a path through this park as part of my route. There were also several workers trimming vegetation along the trails. About halfway through our trek, we took a spur trail that turned out to be a dead end. The trail was packed sand with a grassy shoulder through bog on both sides. While backing up my scooter midway during a K-turn to reverse our course, I discovered that the shoulder was a little softer than I had realized. The three-wheel scooter is somewhat lighter, but less stable than the 4-wheel model. The left rear wheel pitched down, and I tipped over (not that I couldn’t also tip over in the 4-wheel model, I’m certain). I ended up on my left side with my rear-end in the dirt (somewhat muddy) on the side of the bog, with the scooter armrest wedged under my side. My upper body was suspended 4 inches above the mucky bog, supported by some well-placed branches and my scooter armrest.

After I convinced Laura (who was not pleased to see me lying suspended over the bog) that I needed to find a branch to hold onto to continue to support my weight above the muck, she was able to maneuver the scooter upright and back onto the trail undamaged. We were about 60 feet off the main trail, but were serendipitously espied by a passing jogger. She only saw the empty scooter and a woman squatting on the apron of the bog, gazing out into the muck. When she asked if she could help, and ran down the path, she saw Laura’s immediate (and ongoing) problem – me. With one woman grabbing under each shoulder, they managed to reposition me so I could grab onto an upright sapling, and help pull myself up to a standing position. Two steps back onto the trail, and I was safely back on my scooter. No cuts, bruises or scooter damage, just some mud on the seat of my shorts, some nasty looking bugs, and a good story to relate.

We spent another hour in the park, saw some nice birds (grebes, ducks, etc), grabbed lunch, and continue on to PEI.

Aaron
8/4/09

Introduction and Background

My name is Aaron Cohen. I am a 56 year old who was diagnosed with MS in 1976. When we can get away from work, my wife and I like to travel, and we have gotten better and better over the years at accommodating my special needs. We have traveled in the past few years to several national parks, Australia, Alaska, and just got back from a week in Canada’s Maritime Provinces. Like all travelers we have good stories, and many of them have a special slant due to walkers, wheelchairs, and special people we meet who go out of their way to help. I’d like to use this blog to share some of our stories, in no particular time sequence.

My needs and the accommodations I require have changed over the years, as has our ability to prepare for and execute special needs travel. I currently use a walker for short distance walking, and a Go Go Elite three-wheel travel scooter with the larger battery for longer outings. I also have an Invacare Top End XLT handcycle (hand powered tricycle) that I take with me on road trips, like our recent trip to Canada. I have a Hitch Rider Trike-N-Bike Rack that nicely accommodates my tricycle and my wife’s bike. We also travel with a shower chair, which is invaluable for many tasks, including making do in a non-handicapped accessible hotel room, and getting onto and off of my tricycle.

My most important travel accessory is my wife Laura who holds it all together, asks for assistance when I am too stubborn, and tries not to gasp as I make my way down too-steep hills using the walker.