Saturday, November 28, 2009


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.

Saturday, November 7, 2009


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.