NJ Walk/Bike MS Awards Picnic

Meetings of Jewish community organizations usually start with a D’var Torah—a short presentation of religious study most often based on the weekly Torah reading. This fulfills our obligation to study, and gets the meeting off on the right foot.

This past Sunday Laura and I attended a picnic presentation of awards to thank top fundraisers in this year’s New Jersey Multiple Sclerosis Society Walk MS and Bike MS events. The awards were presented in the picnic area of the TD Bank Ballpark before a Somerset Patriots baseball game. Sitting in the hot sun, a little too hot for those of us with MS, I began thinking about what an appropriate D’var Torah would be for this albeit secular event.

So, borrowing heavily from one of Rabbi Benjamin Goldstein’s Rosh Hashanah sermons:

There are some interesting and instructive parallels between the way God addresses Abraham through an angel averting the sacrifice of the Isaac, and the way He addresses Moses when Moses had “turned aside” to investigate the Burning Bush. In both cases God repeats the name of the addressee, “Abraham, Abraham” and “Moses, Moses.” Why, the rabbis asked, would God have to call each man’s name twice? They concluded that they were each intently engaged doing something they perceived as very important, but God wanted to be sure to get their attention for something of higher importance. It seems to have worked. Moses and Abraham both responded to God’s summons by replying, “Heneini,” “Here I am.” They heard, responded, and were ready to act.

That’s what life is all about—People hearing a voice calling on them to fulfill a need, and responding “Here I am.” The Jewish concept of Tikun Olam holds that Man is God’s partner in completing the work of creation. It is up to each of us to respond “Here I Am” even if we have to be called by name twice to break our concentration on the urgencies that fill our daily lives.

As I listened to the accomplishments of all the walkers, bikers and team leaders who reached out to their friends and families to raise money this year, it was uplifting to realize that so many people have responded “Here I am.” May they all “go from strength to strength.”

Aaron
9-21-10

Yellowstone National Park

We just got back from Yellowstone National Park (June 13 – June 18). Wow, what a trip! Laura likened it to nothing so much as going on safari in the United States.

 

Since we visited the Grand Canyon, Bryce Canyon and Zion national parks a few years ago Laura has wanted to visit Yellowstone. This was heightened by our viewing of all 15 hours of The National Parks: America's Best Idea television series on PBS. Yellowstone was the world's first National Park, and sometime within the next 100,000 years it will probably erupt (it is atop a caldera—a super volcano http://en.wikipedia.org/wiki/Yellowstone_Caldera) taking a third of the country with it -- we didn't want to wait. After visiting Yellowstone, it is quite obvious that the area deserves to be a national park three times over—once for the scenic beauty, once for the wildlife, and once for the geothermal features.

 

Several months ago I decided to book an in the park tour package. Hospitality (hotels, stores, tours, etc.) in many of our national parks is run under contract to Xanterra Corp. I went to their Yellowstone reservations web site http://www.yellowstonenationalparklodges.com, navigated to the packages page and booked an all-inclusive tour for Laura and me. It was probably a mistake for me to assume that this direct approach would work for a gimpy traveler like me --scratch that, it was definitely a mistake. Around a week later we received a questionnaire in the mail asking us each for a detailed description of our physical abilities and stamina. I filled this out, and sent it back, without doing the sane thing, which would have been to call them back directly. It was obvious at this point that there were a lot of activities scheduled for this package in which I would not be able to fully participate. A few days later Luann from Yellowstone reservations called to sensitively and apologetically explore with me whether perhaps there was an alternative that would better suit my needs. After getting more details on my special-needs, she promised to do some research and call me back. When Luann called the back, she had spoken directly with tour coordinators and was well versed in the day-to-day details of the exertions that would be required on different tours. We booked the Total Yellowstone package, and couldn't have been more pleased. When we got back I sent an e-mail to Xanterra thanking them for a lovely trip, and praising Luann for the sensitive and professional job she did getting us into the right tour package. You'd think no one had ever said thank you before. If I brought a smile to a few faces, it was no bigger than the smiles Laura and I had when we returned from our trip.

 

The trip started with an orientation meeting on Sunday night. We flew into West Yellowstone Sunday afternoon, rented a car, and took a quick trip into the park. We get into the park for free because I have the "America the Beautiful" access pass http://www.us-parks.com/golden-access-passport.html. You should definitely have one! It is for citizens or permanent residents of the United States, regardless of age, who have been medically determined to have a permanent disability. It provides free access to, and use of, any Federal recreation site that charges an Entrance or Standard Amenity Fee.

 

Within 15 minutes of entering the park we had already seen and photographed ravens, a nesting pair of Bald Eagles hunting on the river, and a bison stalking toward the car through a parking area -- Laura was in heaven! Since this blog is not strictly a travelogue I will not regale you with the details of four days in Yellowstone and one day in Grand Teton National Park. Suffice it to say and we almost had our fill of black bear, grizzly bear, elk, prong horns, sheep, snakes, foxes, eagles, ospreys, other birds of all kinds, lakes, forests, waterfalls, rivers, geysers, Hot Springs, fumaroles and bubbling mud pits. Instead, let me give you a brief rundown on accessibility.

 

Transportation: We traveled through the park on a fairly typical tour bus. I had a great seat, as the other participants graciously ceded the front seat to Laura and me. The bus had comfort facilities for emergencies, but we stopped often enough so that I don't think anyone ever used it. A newer model bus with kneeling capability was in the shop the week we were there. My personal transportation consisted of my walker, and a Pride Go-Go Elite Traveller three wheel travel scooter. This machine breaks down into four pieces in less than 90 seconds, and was easily stored under the bus. The three wheel model is slightly lighter, but also less stable than the four-wheel model. I only tipped it over three times, but Laura and I will fight over getting the four-wheel model when it's time to replace this scooter.

 

ADA compliant rooms: We had reservations and all three hotels the group stayed in over the course of the week. We stayed in the Old Faithful Snow Lodge, Canyon Lodge (cabins) and Mammoth Hot Springs Hotel. All the rooms in dimensions wide enough to accommodate the scooter, either a queen-size bed or a double bed twin bed combination, and a fully equipped roll-in shower. At Canyon Lodge, the roads between the cabins and the Lodge were not in great shape, but there was an on-call shuttle bus with a very accommodating staff.

 

Boardwalks: Yellowstone has miles of boardwalks. Each of the dozens of thermal features and attractions we visited limit the tourists to the boardwalks for both their own safety, and the preservation of the natural wonder. This means that those of us who roll rather than walk get the same access to view and enjoy these fantastic anomalies of nature. While only 6% of Yellowstone can be enjoyed from the road, only a small percentage of the 3 million yearly Yellowstone visitors ventures too far into the backcountry.

 

Little slips: Linda (trip leader) and George (bus driver plus) Milliorn lead a great tour, and anticipated almost every mobility impediment that we were to face (another woman on the trip also used a wheelchair due to a foot injury). In many years of leading this tour every other week all summer long, they had little or no experience with mobility challenged participants—they did great. The shame of it is that more of us should be taking advantage of wonderful opportunities like the Total Yellowstone adventure package.

 

However, during one afternoon optional tour of the Old Faithful Inn, we wove a serpentine path through the Inn to get to the second-floor of the old building. The original Inn building has been kept fairly close to its historical origin, including “wash facilities down the hall” from charming bedrooms that are still in high demand today. More modern accommodations have been added as two new wings on either side of the original Inn. These both have elevators, however one of the wings has two steps to traverse the second-floor between the buildings. Two steps can be invisible to most able-bodied walkers; not so to those of us who roll! We had the opportunity to exercise the elevators in both new wings. Linda was far too apologetic for never having noticed the steps the first way she sent us. On every trip, this should be our worst problem.

 

Tipping the Scooter: doing my best Arte Johnson impersonation, and managed to tip my scooter three times during the trip. Each time was eminently avoidable by applying a little more care and a little more sense to the situation.

• At the Old Faithful restrooms I decided to cut across a less well-behaved portion of the sidewalk. I missed a rut that wouldn't have been a problem if I had addressed squarely. 
• At our campfire on the last night, I eschewed curb cut (actually I didn’t notice it) farther down the parking lot, and decided that with a little extra speed I could jump a small gap in the sidewalk -- wrong again. 
• While Laura was visiting a scenic waterfall in the rain at a location where we had stopped to eat our box breakfast. I was tooling around a small store, and stopped to refill a water bottle at a spigot provided for that purpose. I dropped the bottle cap. Leaning to my left I tipped over into the display of reusable water bottles. Nothing breakable, and the only injury was to my pride.

There was never a shortage of hands to right the scooter and help me up.

 

Citizens of the United States, you have a tremendous resource and the opportunity to learn and enjoy nature in your National Park System. Gimpy travelers, these are your parks too, and every accommodation has been made to help you enjoy them as well. While all travel has its vagaries, touring our national parks should be no more daunting than any other travel. Please take advantage and enjoy the great beauty that men and women of foresight fought to preserve for our benefit. Thank you Teddy Roosevelt!

Aaron Cohen
July 1, 2010

 

NYC Parking

One of the decidedly mixed pleasures of peddling your wares in the New York metropolitan area is traveling to NYC for the occasional, or not so occasional, business meeting.  Never having been a regular commuter, I have limited experience with NJ Transit – either the trains or the buses.  I prefer to drive.

Driving into New York never represented a problem for me.  I generally like driving, and enjoy figuring out the traffic patterns, and using the myriad traffic reports available to optimize my ride.  For example, at the Holland Tunnel, the four left hand toll lanes (booths 1-4) merge, as do the five right hand toll lanes (5-9).  In addition, because we are mostly right handed and our cars have steering wheels on the left, we tend to merge from right to left – toll lane 4 is about twice as fast as lanes 1-3.

Parking once you get to The City presents a thornier problem, especially for those of us with mobility issues.

 If you live in New York, or work there full time, you can get a NYC Disabled Person’s parking permit.  These highly coveted permits allow you to park for free in metered spaces and in many places where ordinary mortals would get ticked or towed.  The process for obtaining this permit includes being examined by a NYC designated doctor—they don’t hand these out like the ubiquitous hang tags issued by State DMVs.

The parking alternatives for casual visitors to New York are street parking (RIGHT!) or a nearby parking garage.  When I go to The City, it tends to be for something with a fixed start time.  It takes me enough extra time to get from my car to the appointment that I rarely want to schedule extra time to cruise for street parking.  I plan my parking by picking a garage from a NYC parking garage map (e.g., http://nyc.bestparking.com ).  I may even call to make sure they will have space for me.  Garages can get “full,” but I have always been able to talk myself into an even supposedly full garage.  The men who work in these facilities have always gone out of their way to make room for my car, and make it easy for me to park to and get in or out of the facility.  For example:

·         Many facilities are down steep ramps and driveways with no elevator service.  Garage attendants have:

o   Offered to drive me back to street level

o   Told me to call ahead when I return and they will bring the car to street level

o   Admonished me for coming down the ramp and not asking for assistance

·         When I use my portable travel scooter, I have never had to assemble it on my own.  Even the busiest garage attendant seems to want to help remove the pieces from my trunk, and help with the easy steps to assemble the scooter (it takes Laura less than a minute to do this now).  I am always most appreciative, and have a tip ready, both coming and going.  When I used the same garage on Liberty Street a second time in two weeks, they had the scooter pieces out of the trunk before I could get out of the car.

Anyone who thinks that New Yorkers are unhelpful or unfriendly has not had the quality interactions I have had with the fine gentlemen who staff NYC garages.

Once I am in NYC, I find the sidewalks and curb cuts to be quite adequate.  Business locations are all quite accessible, but you sometimes have to use the loading dock for ingress and egress.  I will probably write my next blog entry about some of the places in buildings that I have seen because of alternative routing of wheelchairs around old architectural impediments.  Small restaurants and stores may not be as accessible.  I always call ahead to see if the scooter will work, or if I am better off using the walker.

NYC is fun and manageable, but it always pays to plan ahead, have a strategy, and have a backup plan.

Aaron

June 11, 2010

New Orleans Jazz Fest

We cannot wait to go back to the New Orleans Jazz Fest in New Orleans Louisiana again (http://www.nojazzfest.com/).  Jazz Fest is a wonderful music Festival that takes place over two weekends the end April, beginning of May.  Most of the festivities are located on the infield of a racetrack (horses, I believe), and feature all kinds of popular music and acts from Jazz to blues to rock and roll.  There are also special groups invited to highlight the music from a particular country or region.  The feeling is friendly, Louisiana and international all at the same time.  Other Jazz Fest concerts take place in the evenings at locations around the city, but I'd rather use the evenings to enjoy New Orleans.  After a long day in the New Orleans April sun (or in a torrential April downpour!), perhaps nothing beats a relaxing meal and one of New Orleans’ marvelous restaurants.

We first went to Jazz Fest many years ago when I was still gamely navigating with the help only of a cane.  Laura was quite worried about my range and stamina given the large venue.  When we walked onto the racetrack, not really knowing what to expect, we were impressed by the layout, the prepared program and the amenities.  We're also curious to see that The Eastern Paralyzed Veterans Association was offering the free use of a wheelchair to any self identifying handicapped visitor.  I immediately scoffed at the idea and headed off toward the infield.  Less then 15 minutes later I had acceded to reason and was back acquiring a wheelchair for the day.  It was a hard decision for a prideful man, but it really enhanced my enjoyment of the day, and mere words cannot describe the boon it was to Laura.  Sure she had to push, but we were able to move fast without worry.  She readily traded worry and fretting about my mobility for the effort of pushing me around between the various tents and stages.

The Eastern Paralyzed Veterans Association got a nice donation in the bargain; perhaps we should remember to make another donation now and then.

The organizers of Jazz Fest seemed to make every effort to think of the things that patrons in wheelchairs require to enjoy the day listening to good music, eating much better than expected Festival food, and appreciating the works of the juried artists.  In the tent venues, where seating is provided, plentiful good seating is reserved for wheelchair patrons and their companions.  There are wheelchair accessible port-a-johns, and by the second time we attended, several years later, these were kept locked.  Those of us in wheelchairs were issued keys on entering the venue.  This really helped keeping the lines short, and the facilities relatively clean.

The second time we went to Jazz Fest we brought our own wheelchair.  We decided to try to take public transportation from the area of our hotel to the racetrack.  The trolley was wheelchair accessible with a lift, and a well-trained driver (conductor?) who secured the wheelchair in place once we were on board.  It was quite interesting, and only a short walk from the trolley stop to the racetrack.  On this visit there were torrential downpours and a thunderstorm that actually closed the show early.  We spent most of the day in the Blues Tent out of the worst of the rain.  There were places on the infield of the racetrack that became muddy and difficult to navigate with a wheelchair, but generally most places were paved.  I now use a portable travel scooter for situations like shopping malls and outdoor concerts.  However, this wonderful device is totally useless in the rain.  The next time we go I will have to watch the weather reports.

We can't wait to go back.

Aaron

April 10, 2010

Hold the Door

I use a walker to perambulate. I try to be gracious to people who kindly offer their assistance, even when neither they nor I can think of any possible way for them to help. Snarling at peoples’ offers of help because, “I can do it myself, damn it,” just doesn’t work for me anymore. Snarling is out because:

• It really pisses off my wife
• I don’t want to discourage people from generously offering to lend a hand to someone who may really need the help
• It reflects badly on me
• It reflects badly on other handicapped people who, in the main, are less grumpy than I am
• It really pisses off my wife

However, as sweet and lovable as I may endeavor to become, there are still some things that will evoke a strong negative reaction from me. And I still know how to do negative really well. Just two rules to follow really:

• Rule #1: Ask me if you can help
• Rule #2: Don’t surprise me (which is really a corollary of Rule #1)

A few examples will illustrate my point.

Example #1:

Perhaps the most common help I need and often receive is the common courtesy of someone holding the door open for me. When asked, I’ll almost always say yes, except when our positions make it difficult to navigate through the doorway and the door holder. Hint: get in front of me and hold the door so that you are not in the doorway yourself.

The most dangerous form of door holding (here comes the negative reaction) is the person who comes up behind me and pushes open the door from behind while I am in the midst of pushing the door open myself. Once I have started pushing open the door, the weight of the door pushing back becomes part of my system of balance. If you surprise me by pushing on the door, I am fairly likely to fall.

Example #2:

Stairs can be a challenge. Depending on the stairway steepness, the handrails (height, side of the steps), the width of the stairway and whether I am going up or going down, I have a variety of workable strategies. You may be able to help, but what I need will depend upon the strategy employed. Once, when going up the stairs in front of the George Street Playhouse in New Brunswick, an aggressively helpful woman grabbed my walker out of my left hand announcing, “I’ll take that for you.” In this case I was using the walker for ancillary balance. This resulted in a rather loud negative reaction.

Final example:

Sometimes I fall. For unknowable reasons, some people react to seeing someone fall by running over, grabbing an arbitrary limb and trying to pull the fallen erect. STOP. Once I have taken inventory I will probably want your help. However, if navigating stairs requires a strategy, getting up requires even more thought and planning. I have done this before, and will gladly guide you in the best way to help me re-achieve vertical.

I won’t snarl – promise.

Aaron Cohen - January 8, 2010

Windy Day

I go to the gym (fitness center, health club) every Sunday to work out. I should go more often, but . . . that’s another story. I park the car as close to the front door as I can manage except if there are snow banks in the way. Snow banks are hard to navigate with the walker. At The Gold Medal Fitness Center, the handicapped parking in the parking lot is my third choice. First choice is on the street in front of the gym; second choice is across the street. Now the street in question is only one lane in each direction, but it is a busy county thoroughfare. Regardless, I am fairly quick with the walker, even when I’m not wearing my brace. It is easier to work out without the brace.

This past Sunday was particularly cold, about 22^o F. It was also windy with gusts up to fifty MPH. I parked across the street as the four spaces directly in front were taken. Drivers get nervous when they see a walker-guy crossing the street, so I zipped :) into the gym, waving thanks to the drivers who acceded the right-of-way and began my workout. The workout starts with 10 active minutes (with rest stops) on the cross trainer. Most of the other Sunday sweaters are used to seeing me haul myself up onto the cross trainer, but Laura has never had the courage to witness this special spectacle. Subsequent exercises on the various strength machines are more mundane. I try to finish the workout in the winter with 20-30 minutes on the hand bike. During the warmer months this exercise is strictly outdoors on my hand powered tricycle.

When I am ready to leave, I make my way to the front of the gym, sit at the juice bar, put on my jacket in the rare event that I am wearing one, and rest for a minute before going to the car. Today is definitely a day when even I am wearing a jacket. I proceed slowly to the street. After one to 1.5 hours of exercise I am moving a bit slower than I did on the way into the club. I peek out between the parked cars and wait for the traffic light up the street at the ShopRite to give me a break in the traffic. I cross to my car, again waving to the drivers who were either courteous enough, or nervous enough to stop and allow me passage.

I get to the car (sigh of relief), grab my keys and let go of the walker to open the door. Whoosh. Remember Sunday’s gusting wind? It knocks over the walker and sets it down by the rear wheel of the car. Well now, this is something new I think. Startling, but not a problem. It is especially not a problem because a fellow exerciser has followed me across the street, and jumps in to retrieve the walker. People are so eager to help. I think they are relieved when they discover an obvious way to lend a hand. “Thank you.” Did he just happen to be in the right place at the right time, or was he nervously following me across the street, just in case? People are kind, and as Blanche DuBois said, “Whoever you are, I have always depended on the kindness of strangers.”

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.