Waking without Music

Dr. Siegel stared earnestly into my face and over-annunciated his words for my benefit. “I want to do everything possible to get some hearing back.” His eyes were compassionate but also now reflected the beginning of despair. After four dexamethasone injections through my eardrum and the maximum dose of prednisone (60 mg) every day for two weeks, there had been no improvement since I’d woken up on July 1 with a severe hearing loss in my right ear. Six months earlier in India, the same thing had happened to my left ear. We had just arrived in a remote beach town in the south where there were no medical resources. Eventually, we went to a prestigious Indian hospital in Rishikesh where a doctor diagnosed severe hearing loss, too late for steroids, the only known treatment and that has to be administered within 72 hours. Fortunately, at that time the hearing in my right ear was very good. Now my hearing had been reduced to about 10% with very low word recognition.

Sudden Sensorineural hearing loss (SSNHL) is a rare infliction to have in one ear but both ears…the doctor had only seen two other patients in his whole career. In his desperation, Dr. Siegel strongly suggested doubling up on the steroid therapy. “If you were my wife this is the treatment I would prescribe.” He continued saying, there’s about a 50% chance of return of SOME hearing.

We were hopeful that maybe we could save the hearing this time. I felt surprisingly calm as all of this was being discussed. In hindsight, the reality hadn’t set in. At that moment, I could look at the hearing loss to be more than just a disability. Perhaps I could learn something that had previously been unavailable to me.

The calm did not last. The steroids put me into a toxic state of high anxiety. After the fact, everyone agreed it was too much for me. The effect would take a couple of months or more to wear off. I can now testify that ‘steroid psychosis’ is real and steroids should be used with extreme caution. Certain people just cannot tolerate them. Unable to sleep, I felt constantly wound up and found it hard to settle on anything, unable to concentrate even on reading, stressed from responding to all the emails I received.

We refused the last booster shot because there’d been no improvement. Dr. Siegel sighed, gave me a compassionate look and left my life. He’d tried and it didn’t work. Now it was up to others to try and diagnose why I’d lost my hearing After meeting with various specialists and numerous tests there’s still no conclusive answers. No CT scan, MRI or Xray can provide visibility into the ear to make a diagnosis. At this point, my neurologist is the only one showing any interest in trying to diagnose the cause but not with any hope of returning my hearing. I’ve also tried acupuncture and Chinese medicine but again no improvement.

I feel locked in a noisy wind tunnel, sounds coming but from far away, my voice vibrates in my head. Compounded with the hearing loss is acute tinnitus…a roaring that is at times overwhelming and aggravated by background noise and also by stress. I can communicate one on one if I’m close to the person and the background is quiet…no running water, kettle boiling. A group setting is almost impossible. Unlike gradual hearing loss as part of aging, SSNHL is in the lower decibels…it’s easier for me to hear higher sounds, women’s voices than men’s. Gerard’s is a strange exception, perhaps because it is so familiar to me. Music has faded away to a thin single sound or a background rumble. I cannot hear phone conversations (Gerard who is now my personal secretary, reminds me that I never liked talking on the phone anyway). I’m getting better at reading closed captions and trying to master lip reading. I’ve also learned that severe hearing loss or even total deafness is not given a lot of attention or resources. It’s not officially treated as a disability like blindness and there is little financial aid for hearing aids, cochlear implants, etc. SSNHL specifically has been barely researched because it’s so rare.

Our plans for India this winter are presently on hold. As the toxic effect of the steroids diminishes, I’m now beginning to address the new circumstance. Growing up with a father blinded by diabetes and knowing his isolation, I’m grateful that I haven’t lost my sight. There is an upside side. As Howard Anderson, the founder of the Yankee Group where I worked for many years, noted, “Well you don’t have to listen to Donald Trump anymore!” I’m spared from hearing the chatter from noisy neighbors across the alley on a hot summer’s night. Meditation helps to still my turbulent mind and quiet the tinnitus, and I’m adding Tai Chi to the yoga and pilates classes at the YMCA, and grateful to be back on my bicycle, with more caution. As advised by a deaf therapist whose counsel I had the good fortune to receive, I take walks ‘observing rather than thinking’. When I get outside my head, my sight is enhanced. Life still has joy in it. The outpouring of concern from friends has been overwhelming…..and most of all the unwavering support and love of my husband; I’m not alone.

Waking Without Music

Dr. Siegel stared earnestly into my face and over-annunciated his words for my benefit. “I want to do everything possible to get some hearing back.” His eyes were compassionate but also now reflected the beginning of despair. After four dexamethasone injections through my eardrum and the maximum dose of prednisone (60 mg) every day for two weeks, there had been no improvement since I’d woken up on July 1 with a severe hearing loss in my right ear. Six months earlier in India, the same thing had happened to my left ear. We had just arrived in a remote beach town in the south where there were no medical resources. Eventually, we went to a prestigious Indian hospital in Rishikesh where a doctor diagnosed severe hearing loss, too late for steroids, the only known treatment and that has to be administered within 72 hours. Fortunately, at that time the hearing in my right ear was very good. Now my hearing had been reduced to about 10% with very low word recognition.

Sudden Sensorineural hearing loss (SSNHL) is a rare infliction to have in one ear but both ears…the doctor had only seen two other patients in his whole career. In his desperation, Dr. Siegel strongly suggested doubling up on the steroid therapy. “If you were my wife this is the treatment I would prescribe.” He continued saying, there’s about a 50% chance of return of SOME hearing.

We were hopeful that maybe we could save the hearing this time. I felt surprisingly calm as all of this was being discussed. In hindsight, the reality hadn’t set in. At that moment, I could look at the hearing loss to be more than just a disability. Perhaps I could learn something that had previously been unavailable to me.

The calm did not last. The steroids put me into a toxic state of high anxiety. After the fact, everyone agreed it was too much for me. The effect would take a couple of months or more to wear off. I can now testify that ‘steroid psychosis’ is real and steroids should be used with extreme caution. Certain people just cannot tolerate them. Unable to sleep, I felt constantly wound up and found it hard to settle on anything, unable to concentrate even on reading, stressed from responding to all the emails I received.

We refused the last booster shot because there’d been no improvement. Dr. Siegel sighed, gave me a compassionate look and left my life. He’d tried and it didn’t work. Now it was up to others to try and diagnose why I’d lost my hearing After meeting with various specialists and numerous tests there’s still no conclusive answers. No CT scan, MRI or Xray can provide visibility into the ear to make a diagnosis. At this point, my neurologist is the only one showing any interest in trying to diagnose the cause but not with any hope of returning my hearing. I’ve also tried acupuncture and Chinese medicine but again no improvement.

I feel locked in a noisy wind tunnel, sounds coming but from far away, my voice vibrates in my head. Compounded with the hearing loss is acute tinnitus…a roaring that is at times overwhelming and aggravated by background noise and also by stress. I can communicate one on one if I’m close to the person and the background is quiet…no running water, kettle boiling. A group setting is almost impossible. Unlike gradual hearing loss as part of aging, SSNHL is in the lower decibels…it’s easier for me to hear higher sounds, women’s voices than men’s. Gerard’s is a strange exception, perhaps because it is so familiar to me. Music has faded away to a thin single sound or a background rumble. I cannot hear phone conversations (Gerard who is now my personal secretary, reminds me that I never liked talking on the phone anyway). I’m getting better at reading closed captions and trying to master lip reading. I’ve also learned that severe hearing loss or even total deafness is not given a lot of attention or resources. It’s not officially treated as a disability like blindness and there is little financial aid for hearing aids, cochlear implants, etc. SSNHL specifically has been barely researched because it’s so rare.

Our plans for India this winter are presently on hold. As the toxic effect of the steroids diminishes, I’m now beginning to address the new circumstance. Growing up with a father blinded by diabetes and knowing his isolation, I’m grateful that I haven’t lost my sight. There is an upside side. As Howard Anderson, the founder of the Yankee Group where I worked for many years, noted, “Well you don’t have to listen to Donald Trump anymore!” I’m spared from hearing the chatter from noisy neighbors across the alley on a hot summer’s night. Meditation helps to still my turbulent mind and quiet the tinnitus, and I’m adding Tai Chi to the yoga and pilates classes at the YMCA, and grateful to be back on my bicycle, with more caution. As advised by a deaf therapist whose counsel I had the good fortune to receive, I take walks ‘observing rather than thinking’. When I get outside my head, my sight is enhanced. Life still has joy in it. The outpouring of concern from friends has been overwhelming…..and most of all the unwavering support and love of my husband; I’m not alone.

England in the Sun

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Our arrival in England was a spectacular spring day – a cloudless blue sky that Gerard could not believe. He kept saying, “This is not the England I remember!” We began our twelve-day stay with Torie who I’ve been friends with since I first arrived at boarding school at the tender age of eleven. I’ve also known Julian, who was then her next door neighbor and now her husband, almost that long. They are both amazing hosts, meeting us at the airport with a wonderful vegetarian dinner waiting, prepared by ‘Le Chef’ Julian. The following day, the weather continued to be stellar; still in disbelief, Gerard took his fleece with him. Torie showed us picturesque Henley and we walked along the Thames amid cherry blossom and blackthorn (which is actually white and not to be confused with hawthorn, not yet out).

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The next day, my brother drove us down to Winchester where my cousin Cherryl had graciously organized a family reunion with cousins I hadn’t seen in decades. In fact, it’s taken 50 years to meet Pippa’s husband, David. And it was the first time since 1985 that I’d seen Cherryl’s three children. There was hardly enough time to catch up with everybody; there were so many people to talk with. The meal was lavish. Again, as throughout the whole visit, everyone took great care in accommodating our diet.

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We stayed the next couple of days with Tim and Sally, both of whom go back to my Southampton University time. Gerard also knew them briefly when he joined me there. They live in the Old Rectory, next door to a thousand-year-old church and surrounded by beautiful Hampshire countryside. The view from our bedroom window stretching down their back garden and to the fields beyond is so peaceful; perhaps why I slept well there. We had a pub lunch in the New Forest with another colleague from university days. The next morning, Tim and Sally saw us off from the village railway station of Romsey, where we took the train to Bath.

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Kate, who like Torie goes back to my boarding school days, and her husband Nigel had just moved into their house in Bath when we last visited them four years ago.

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They described their renovation plans and how they were going to blow out the back to make a new large kitchen but we had no idea how transformative it was going to be. A huge glass paneled wall now looks out on a garden of shrubs and flowers that we found hard to believe was less than four years old. It was perfect, sitting at the breakfast table in bright sunshine with the glass panels open on to the garden.

Gerard who after being remarkably healthy throughout India wasn’t feeling great, some bug that hit him suddenly, was able to take it easy here while I took long walks with Kate beside the canal running right at the end of their street.

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Our last afternoon, Nigel took us on a short walking tour of downtown Bath

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and then, to avoid traffic jams, on an immense detour out into the country, which was absolutely beautiful,

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ending up at Landsdowne Crescent back in the city. The hedgerows were full of primroses, bluebells and wild garlic.

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The next morning, Kate drove us back to Wargrave where Julian had prepared yet another culinary delight. He is a caterer by profession and a chef by choice and we have been the recipients of one delectable meal after another. On Friday, our luck with the weather ran out… it had turned wet and cool. But we still managed to walk beside the river. The Sultan of Imam now owns the old Manor House and is responsible for planting the thousands of daffodils around the town.

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The next day we went up to London, where I met up with Stephanie another long-standing friend I met in my last two years of boarding school and we played a strong role in my adolescence. On weekend passes, she introduced me to London’s post-bohemian scene. Gerard and I met Stephanie and her artist husband in a local cafe and then moved to a restaurant for lunch next door. Jonny, who we just recently saw in Rishikesh, joined us. He had just returned from India the night before and we were fortunate he had the energy to trek up to London from Brighton to see us. While Jonny and Gerard talked about meditation, Stephanie and I immediately picked up where we left off four years ago. A sign of good friendship. Five hours later, we I had to say goodbye, not knowing when I’d see her again.

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On Sunday, our last day, my brother arranged a family lunch, with children and spouses. All thirteen of us had a chance to talk, but with limited time I left feeling there was much more to be said. To end the day and our stay in London, we braved the bitter cold (the temperatures had now dropped to 5C an extreme change even for Britain) and boarded the bus to Shepherd’s Bush for a cup of tea with Cristiane and Crispin, friends from when I worked at Yankee Group. It was great to see them and their two girls in their new house.

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My infrequent and brief visits back to England are always nostalgic but this time was particularly so, perhaps because it’s now been forty-five years since I left to live in the U.S with Gerard. I was so young, so English and totally unprepared for America. When I would return though rarely, I was grateful to the customs man glancing at my British passport and saying Welcome Home! But now, I feel quite foreign, England has changed so much, economically, politically and culturally. Even the cooking has been revolutionized in recent years. We both agreed we ate like royalty thanks to the skill and generosity of our hosts. I’m grateful I still have friends from school and college that I can pick up with so easily and who welcome Gerard and I into their homes.

But the countryside remains enchanting as ever and when I walked along country lanes, the hedges exploding with primroses, and looked out across the open fields, everything so green and fresh (thanks to ample Spring showers) clouds scudding across the sky…I recognized the England I knew forty-five years ago.

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After the Rain

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One night it rained heavily, with thunder and lightning moving around the hills. In the morning, the clouds slowly lifted out of the valley lifted, then the mountains beyond became defined.

fullsizeoutput_45bWe walked back up to the temple on the ridge and looked out towards fresh snow on the distant peaks.

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It was tantalizing not to be closer, but our time in India was running out and then our friend Peter wrote to say it was raining and cold in Vashisht. So we decided to just spend the last week of our stay in HP here.

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Walking out into the fields in another direction, two children called out to us. Dressed in their ridiculous British-style school uniforms, it was Suman and her younger brother, Anurag whose family we had visited the previous two years. Their father had not been there, working as a welder in Saudi Arabia for several years and we were impressed by how independently his wife managed the small farm alone. Suman insisted we come to the house. She and Anurag quickly change out of their school uniform.

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Everyone was pleased to see us including their father who was finally home. He confirmed the terrible stories of working conditions we hear of in Saudi Arabia; he’d received no pay for the last six months he worked there.

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The final four days of our visit coincided with an annual festival. Baisakhi, rooted in the rural agrarian tradition, bids a final farewell to winter.  All the goddesses from local villages descend on the town, transported via wooden poles on the shoulders of village men and accompanied by drums.

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We’ve seen this same festival in Vashisht but not here. Celebrated by both Hindus and Sikhs, the Hindi temple and Sikh gurudwara were festooned with colored lights at night. But in the manner of all Indian festivals, it was also secular. The main thoroughfare beside the lake became a massive carnival – rows of stalls set up selling the same cheap merchandise. (We sympathised with the vendors who must have lugged it all up the mountainside, only to turn around and lug most of it down again at the end of the festival).

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Literally, thousands of people from the neighbouring villages visited over the four days and the town was suddenly transformed from its usual peace to a noisy hubbub. Politicians of the incumbent BJP party pontificated over loudspeakers; drums continually pounded. Each evening the politicians gave way to loud music. Singers were accompanied by electric instruments and pakawaj drums The music ranged from crooning 50s style music to Bollywood to local folk. We preferred the latter which was nostalgic of the folk music of Morocco. It was all an interesting hybrid mix, but like everything in India, the amplification was way too loud.

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Finally, we said goodbye to all the friends we’ve made in this little town and took the night bus direct back to Delhi to begin our trek home via a few days in England.

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A Walk in the Countryside

Our friends have left and we’ve decided to stay longer because of inclement weather up north. It still amazes me how we continue to meet interesting people as we travel. With little effort, we really connected with these two couples. Without the temptation of spending half the day in the chai shop chatting, we have more time to work on our writing. We trade the laptop back and forth and Gerard has made good headway on his story. One late afternoon, I went out and walked through golden wheatfields, passed smiling women and children and finally, just as the light was fading, came to a small but colorful temple, perched on a ridge. The longer we’re here the more walks we discover.fullsizeoutput_449

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Mellow in Kullu

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At first glance, the peaceful town nestled in the hills at the beginning of the Kullu Valley has changed very little since we first discovered it eight years ago. There are few other places in India that you can say the same. Returning here almost every year, everything is familiar – the prayer gong resounding in the monastery in the early morning, pilgrims and Tibetan refugees performing kora, circling the lake. The Hindus and Buddhists appear to live in peaceful harmony. There is still little traffic and few places to eat, though more than last year. Thankfully, this has not become a tourist destination but there are a few more westerners. In the past, the town has been the meeting place of some of our strongest friendships, Frederic from France and Peter from the US. Again, we have connected with two couples of well-seasoned travelers around our age who also return here regularly.

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They each have their stories of traveling in India and how it all began. Marina from England, starting traveling immediately after leaving college. Seeing a lot of Asia, she fell in love with India. For many years, she has divided her time between England and India, returning to her flat in London in the summer to make enough money at waitressing and gardening to return to India again.  She met Rajiv in Gokarna seven years ago.

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Marion first made several trips to India from Germany in the mid 70s overland via Iran, Afghanistan, and Pakistan. She told stories of the hassles of traveling as a single woman, especially in Pakistan. For a while, to finance her trip she hooked up with a scheme of delivering new Mercedes to rich Iranians who were only allowed one car. She would pick the car up in Munich, registered in her name, and drop it off in Tabriz. She also now returns to India with Jhurgon for several months each winter.

fullsizeoutput_435Seeing Sapna and her family was a reunion; they were so happy to see us you’d have thought we’d known them our whole life. Such is the Indian disposition. She’s still scraping out a living at a small restaurant on the main street (there are two streets in town).fullsizeoutput_412One afternoon, she and her husband took Gerard and I on a short trip to see the progress on their new home. With very little money, Kheem Chand is doing most of the work himself and progress is slow.

 

fullsizeoutput_425Our spacious “apartment” complete with kitchen and large windows looking across the hills and down on the town, is arguably the best accommodation we’ve ever found in India, and definitely the best value. 345 steps up from the town, the barking gangs of dogs are distant, and the destructive monkeys relatively sparse.

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Our room is the top finished floor of the yellow building next to the big blue building.

Our Hindu landlady rang the doorbell with aloo parathas on Easter Sunday for breakfast. (Did she even know it’s Easter Sunday?) The town is so small, that whenever we come down the hill, we bump into the same people. The gentle-faced monk who opened up to us a year ago and told us the fascinating story of how he entered the monastery as a young boy. Now in his 30s, he’s still serving cappuccino in the monastery cafe below. I find this place comforting.

But there are changes and it may not be so tranquil beneath the surface. The town is spreading out further into the countryside, with new buildings cropping up, including more hotels serving predominantly the ever growing Indian tourism. A hard top road connecting outlying villages is being financed by the state. But more disturbing is a hint of discontent between the Hindus and Buddhists. Perhaps it was always there and we were just unaware. But it’s disturbing to see the thick curtains of prayer flags beside the lake burned. No one has taken responsibility. There may be some jealousy between the two communities, and understandably. While the Buddhist community is getting outside assistance, the Hindus have no such luck. Until now, the only murmur of discontent that we knew of was from a restaurant owner who said a few years ago that the gold statue of Guru Rimpoche overlooking the town was far bigger than expected. The Guru is famous for bringing Buddhism to Tibet, he did his spiritual practices here.

 

The day before our German friends left, we accompanied them on a walk to a lake several km above the town. When we set out the weather was clear, the sky blue. We climbed high up the hillside, at first via steps, later clambering over treacherously uneven and stony ground. Within a couple of hours, the sky darkened and thunder began rolling around the hills. A chai shop was in sight and everyone began climbing faster. We reached there just before a downpour. The walk would have been beautiful if we hadn’t been watching our feet and going so fast to beat the rain.fullsizeoutput_434fullsizeoutput_439

 

 

Looking for 12603

Generally, Gerard makes an itinerary long before we leave for India. This year, the leg of the journey into the mountains would be determined by the weather, and since there are so few trains in this area, no need to book in advance. As the time drew closer to leave Rishikesh, we realized getting to the Kullu Valley was not straightforward. It doesn’t happen often, but there are times when your plans just don’t work out and you have to try to explore the remaining options with an open mind and “stay calm.” Gerard had read somewhere online that the easiest route from Rishikesh was to take a train to Ambala and then a state bus to Mandi at the beginning of the Valley. We hustled down to a travel agent hoping there would still be a vacancy on a train – and we were in luck. That afternoon, we looked for state buses from Ambala to Mandi; there were none. Ok, well, private buses. Yes, there are ones going from Delhi to Manali, that passes through Ambala around 11pm. The train arrives around 9pm if it’s on time…so maybe that could work. We phoned a few travel agents in Ambala to try and purchase the private bus tickets, and nobody would take a US credit card. The other aggravating factor, you couldn’t buy for distance travel; you could only buy the whole route from Delhi to Manali. The entire afternoon was spent staring at the computer screen going around in circles. “I’ve had enough, let’s go and eat dinner.” On the way out of the hotel, one of the friendly staff suggested we go to Chandigarh by train instead of Ambala and then take a state bus to Mandi. So we grabbed our railway tickets and went back to the travel agent. The agent said, “ Yes, there is availability for a chair car train to Chandigarh tomorrow getting in at night.” “We’ll take it.” A very small refund on the old ticket because the departure was less than 24 hours away.

The next hurdle was to find accommodation in Chandigarh. Since it’s not a tourist destination, the usual type of guesthouse we stayed in didn’t exist. Searching the net, it was all business type hotels. Then we ran into payment problems again; the hotels would not take a US credit card. Finally, I found a candidate who would take PayPal – we booked it. Chandigarh is a relatively new city built post-Independence, laid out on a grid and divided into orderly sectors. This seemed boring and it had never previously appealed to us. But as soon as we decided to go there, everything fell into place.

The next morning, we said goodbye to our friendly hotel staff and, in the heat of the day, schlepped our bags across the narrow and very crowded Laxman Jhula bridge. Almost immediately, a taxi drew up and asked where we going. He said, “I’m going to the bus station too. I’ll only charge you 100Rs.” (a third of the regular price) .Wiping his sweaty brow, Gerard thought the price of the air conditioning alone was worth the 100 Rs. We made good time and arrived at the bus station JUST as a bus was leaving for Haridwar. With plenty of traffic, rail crossing stop, not to mention the usual cows sitting in the road, the bus driver kept the journey within the estimated hour and got us to the train station in plenty of time. But where was our train? There was no 12063 to Chandigarh listed on the board; the closest was 12053 to Amritsar. Eventually, we found a station master who informed us our train would be attached to 12053 shortly. Looking up and down the platform, Gerard muttered, “The train is supposed to leave in 10 minutes.” Sure enough, a little after the train’s scheduled departure two extra carriages did arrive that were 12063. The whole train was chair car class, meaning we sat in chairs instead of compartments as if on a bus, and with wall fans instead of AC. It was crowded but we found our reserved seats and then at every stop more people more crowded on. I sat by the open window and took pictures of a surprisingly fertile country landscape that was decidedly Sikh, passing numerous Gurudwaras.

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Arriving in Chandigarh almost on time, we easily found our hotel, the city being as orderly as we expected. It was a typical city hotel – a room just acceptably clean, the bathroom without a full wall connecting it to the bathroom of the neighbouring bathroom. We heard our Indian neighbour get up before 6 am and spend what seemed like two hours performing loud nasal cleaning, involving lots of water. I would love to witness this procedure just once.

Right after breakfast, a helpful travel agent next door to the hotel told us a state bus was leaving for Mandi in just over an hour. We ran back and threw our things together, grabbed a rickshaw and reached the bus station in the nick of time to purchase perhaps the last two tickets in the back of the bus We boarded. Luggage is always a problem on state buses– there’s no room for bags and yet the conductor insists on your bringing them on the bus and either jamming under the seat or overhead. It’s not always possible. As I struggled with my bag, the ticket collector rather abruptly took and jammed it under the seat and then took Gerard’s and forced it into a space overhead. After a bone-shaking eight hours, we arrived in Mandi, and again just in time to catch the last bus up to Rewalsar. Two hours later, we settled into a very nice guesthouse near the top of the town (a 345 step climb – Gerard counted them) with a wonderful view of the surrounding hills, town, and valley below.

 

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