Meanwhile - at Uluru.

(web image, ©DJB 2013)

After an epic 2885.5km road trip, Ben's sister and her boyfriend, both keen travellers, have arrived at Uluru (Ayer's Rock) where the temperature is 42°C in the shade and, to quote a recently received SMS, European tourists happily 'crisp themselves' by the hotel pool. According to the updates, it's been quite an adventure travelling the sunbaked highway from Port Augusta to Coober Pedy, a town responsible for 70% of 90% of the world's opal production where people sleep underground as well as work there; and then the long stretch to cross the Northern Territory border, a left turn and a few more hours to the big red rock. They'll spend new year's eve under the stars at Uluru while we spend ours under the compact fluorescents of our kitchen refuge.

Benanas.

(web image)

Ben's a banana connoisseur. The interest probably started in the depths of the European winter when he enjoyed shopping at Karow market. Over two years ago, on our first trip to Berlin, we sampled Costa Rican bananas and they were delicious. These days we are always on the lookout for tasty YBF's (yellow bent fruit). It's also been quite hot lately and we're almost out of sunscreen. The Hamilton brand has been reasonably good; on the cheaper end of the sunscreen spectrum and with an excellent name. This time, however, we've gone with another brand, again because of the name and because Ben likes bananas.

Christmas in the kitchen.

Last year, Ben had a quiet day by himself in a guest house in Berlin Buch. This year he's at home and it's still very quiet, even with one other person and a dog for company. We had a family Christmas lunch in the kitchen last weekend, attended by six adults and two very busy little ones. "We're not so good at this Christmas thing," said Ben when I mentioned I hadn't bought him a gift, and he hadn't bought me one either. Jazz enjoyed an early morning beef bone; her Christmas is just like any other day.

Birthday cake.

We make a concerted effort to eat healthy and, for this reason, the small family gathering at Bobby's Bistro celebrated Ben's 22nd birthday without a cake. However, in some minds, a birthday just isn't complete without a cake so this morning Uncle Peter arrived with a cake of sorts and a pack of candles. He only used one candle which was duly lit, happy birthday was sung by the brotherly duo and the candle blown out, thus completing the formal celebration in the proper manner.

22nd birthday.

(web image)

It's Ben's 22nd birthday today. Last year he was living by himself in Berlin. This year he's living at home in Wheelers Hill, still by himself much of the time, but with family and friends not so far away, geographically speaking. Like that ever-expanding spirit ball in those interminable episodes of Dragon Ball Z, energy is building and one day the health problems will be blasted away.

Kitchen tap.

Amid all the worries and upheavals of the past six months, there has been one constant; every Tuesday night Ben attended tap dancing classes. With lots of help and encouragement, and very determined regular practice at home in the kitchen, the absolute beginner has learnt to tap dance. He's not in the Studio D All Stars concert but we will be in the audience for the Sunday matinee performance, singing along to the chorus of Johnny O'Keefe's Shout. Why tap? Well it was the only class available for adults at the local dance school and it turned out that the tap class was a lot of fun. We have to thank Kelly, the teacher who started term three on crutches, and the other students for all their help. Special thanks go to Kathleen, without exaggeration the most organised person in the whole world and also an experienced tap dancer, who patiently and happily mentored the new student every week.

Yoga in the kitchen.

Ben does yoga exercises every morning for an hour before breakfast. He attended a few classes at the Ringwood School of Yoga back in July and some at Mount View Yoga in August. Mostly, though, he's self taught and learned many of the positions from a book. In the evening we both do stretching and movement exercises for about forty minutes before dinner. In the final few minutes of the session, we do a "winding down" exercise lying on the floor and slowly relaxing from head to toe while paying attention to the breathing. It's very much like meditation but lying down and I have to admit to sometimes nodding off during this part of the routine.

Today we had two very welcome visitors to our kitchen; one's a very good friend who, many years ago when she was single, shared our house with us and the other was someone who we'd never met before. He was, however, happy to try out the yoga mat and demonstrated his skill at the flat-on-back quarter rotation, effortlessly moving himself from along to across the mat. He also displayed the part-way-over axial rotation which will, with a little more practice, develop into a full axial belly flop. It's nice to have visitors and we hope to see Yumi and son Shaun again soon.

The painted door.

It was 215 days ago that we slowly walked the long corridor on the lowest level of Launceston General Hospital and passed through the painted door. From a distance it looks transparent and you can see the office on the other side but it's just been painted that way. Once you enter, someone has to push a button to let you out and sometimes they won't. I did secretly take an overnight bag on that rushed trip to the hospital, thinking that a good night's sleep and a few tablets were all that was needed. Ten days behind the painted door was a relatively short stay by all accounts but it seemed unbearably long at the time.

Kitchen battlefield.

It's calm in our kitchen where the real battles are mostly internalised. Skirmishes do occur for an hour or so each day. We've stopped playing chess, probably because the games took ages and we assiduously played them out to the bitter end. Scrabble/Scarble is still in the repertoire and, recently, the Warhammer pieces bought in Germany two years ago have been assembled and glued. The rules of the game are complex and the mental arithmetic required to play can be daunting. I have a new-found respect for the 'trekie' kids and adults who hang around Games Workshop and actually understand what they're doing. The rule book for our older set is out of print and we purchased one online from an American supplier called Nerdvana.

The results of recent scans have mirrored the results from Germany last December. Both times the MRI suggested something unusual but further tests found no discernable physical basis for symptoms. A local ENT specialist also checked the sinuses and declared, "It's like a Mercedes Benz in there!" The Helios team at Bad Saarow have done an excellent job.

Occasional animation.

There's an old TV and DVD player in our kitchen but they're only used occasionally. A few months ago, it was impossible to sit and watch for more than a few minutes because of the discomfort that sitting and watching caused. Slowly the duration has been extended and thirty minutes is now achievable on a good day. It's taken weeks to view a single video, and we've given up on some which felt a little too suspenseful (Karate Kid!) and others that were too long (The Party). Anime has proved to be a favourite genre and, thanks to Tess, we have a very good collection to work through. It's hard to be animated when you're unwell, thankfully there's enjoyment to be found in watching these amazing stories. The medication dose is now almost six times higher it was originally and occasionally we see signs of animation and improvement.

Spirited Away

Laputa: Castle in the Sky

Porko Rosso
(web images)

Everything changes.

The cottage is on the market.

We only managed to stay in the cottage for a few months. It was very liveable and I really liked the location: set back from the highway (but with full view of the occasional passing traffic) and beside the track leading to the cemetery. Lots of stories could be, and some have been, told about the events of the past autumn and winter in this little cottage on the edge of town. It would have been nice to spend the summer there, and that was the plan, or one of the plans depending on how things worked out. We were potential buyers for a while but, somewhat sadly, that now seems increasingly unlikely. Everything changes, and we move on.

Scarble Deluxe.

Scarble Deluxe™ We often sit at the kitchen table and play Scrabble. It's been difficult to complete a game in one sitting and usually takes a few days to finish. A few years ago, Uncle Peter and I inadvertently invented Scarble; Scrabble with spelling mistakes that are discovered well after the letters have been placed on the board. Ben and I have just invented Scarble Deluxe where the spelling of the very first word was incorrect but we convinced ourselves it was right and kept playing. The Scarble Deluxe™ game pictured has at least two spelling mistakes, including that extra special first-word error.

C2 Déjà vu.

The recent scan picked up the same anomaly as the scan in Launceston last year, C2 looks slightly unusual. The report from Launceston suggested a "developmental problem" and the recent report suggested a possible "healed fracture". Further investigations are underway and Ben's seeing an orthopaedic specialist in Richmond, near the Epworth which is very familiar territory. This is exactly where we would have been if Ben was living at home last year, but conditions weren't right at the time. The Berlin neurologist considered and then, it seems, dismissed this line of investigation. Perhaps that's partly because of specialisation since an orthopaedic specialist would be more interested in bones. These visits do get us out of the kitchen where, finally, the medications are taking effect and the fog is gradually lifting.

MRI at DVP.

Still pursuing the source of neck pain, Ben had an MRI at Dandenong Valley Private Hospital today. Next week, there's a specialist appointment at the Epworth to review the results of the many tests and scans done over the past few years and, of course, to examine the patient. I believe the term 'MRI' means 'Medicare Rebate Ineligible'; the scan costs just under $300 and the amount cannot be claimed on Medicare. Just over twelve months ago, an MRI was done in Launceston and that event escalated into a hurried trip to Berlin. Investigating these mysterious medical conundra has been rather expensive.

Church on Sundays.

It's 10:25 on Sunday morning as our neighbour parks their new silver Mazda 3 exactly opposite our driveway, then moves their new white Mazda 2 from its parking spot behind their regular visitor's Mazda 626, up the drive past their other new car, a blue Mazda 3, and into the carport. Shortly after, I reverse our rapidly fading Ford off the nature strip, taking care to avoid the car now parked opposite and another neighbour's dark blue Mazda 6 sedan positioned right next to our drive. We arrive at the church late as usual and enter quietly just as the congregation stands for the Gospel.

We go to church every Sunday now, after a break of several years. It used to take some cajoling to get the kids to church and eventually I just gave up because it didn't feel very edifying making a 'sign of peace' with someone who'd been really annoying. We've all grown a little since then and, somewhat unexpectedly, I find that I'm the one being reminded to leave the house on time. I'm not sure if the parish priest noted our long absence but he's still there and we've said hello a couple of times since our return. They never stopped sending the planned-giving envelopes, even after I wrote to say we'd moved to Mulgrave all those years ago (before we moved back to where we started, we've done that twice now). The planned $5 per week was a pathetic amount now that I think about it, but we're now in arrears by a thousand or two.

We're supposed to be at the farm this weekend but didn't get there. A nephew/cousin had his 21st and we didn't get there either. Sometimes we just seem to be stuck, he and me.

Little steps forward.

Game Masters, ACMI.
(web image)

Iron eagle, Healesville Sanctuary.

We've had a few outings over the last two weeks: a train trip to the city, a visit to the Game Masters exhibition at the Australian Centre for the Moving Image (ACMI), a longish drive and a wander around Healesville Sanctuary. Also an old school friend and former fellow parkour practitioner came to visit. These are tentative steps in the right direction.

Orbiting the son.

(web image)

I've been orbiting the son for the last few years; initially at a distance and gradually drawn closer as gravity increased. Generally, orbits diverge as time passes, momentum gathers and other attractions appear but not in this case. The space-time continuum is very bumpy in our little fragment of the vast universe and unusual things happen frequently.

The new medication has been abandoned for the moment in favour of going back to basics with one low-potency medication and increasing it to a very high dose. We're on the alert for positive signs as well as negative reactions. Help and guidance is just a phone call away and the doc will review progress on Thursday.

One year ago - downward spiral.

Recovering at home.

Just one year ago, October 2011 was an eventful month. Our traveller felt well enough to return to the mainland, came back home for a few hours, then headed straight to "The Farm". There were travel plans and tickets were purchased for a trip overseas. It all fell apart in an alarmingly short space of time. Health declined and, anticipating relief, he retreated back to Tasmania where the spiral continued ever downwards. At that time our unhealthy house was avoided, cold climates and fresh clean air were vital, food was healthy and always plain, a tent was the preferred abode and all travel was by motorcycle. One year later, that same house is a comfortable refuge, warmth is of utmost importance, food is still healthy but made interesting with spices, camping gear is packed away and two motorbikes sit idle in the garage.

PhD in PDF.

OK, so I read up on things, searching for details on medications, interactions and others' experiences. Ben says I have a PhD in PDF then readily discounts anything I say. Leaflets produced by manufacturers usually state, "The mechanism of action of ..., as with other drugs ...is unknown," which doesn't cause tremendous optimism. Reading about clinical trials can be somewhat reassuring but those long lists of possible side-effects are a genuine concern. Every person is different and small doses of a medication may cause major problems for one person while another person tolerates twice as much with no difficulty. The current combination has worked up to a point but no further, and now something new has been prescribed. The changeover will be very gradual and effects closely monitored.

Meds.

(Web image)

Medication doses and the delicate balance between efficacy and side-effects are now a major pre-occupation; made more complicated by combining two medications to achieve the desired outcome. We're still unclear what the desired outcome actually is, unless the key purpose is to prevent relapse and, thankfully, that appears very unlikely. Even though the basic stability is very welcome, "not getting worse" isn't quite the same as "getting better"... and getting better will require more than just medication.

No sale!

The house is off
the market. (Web image)

Despite the excellent advertising campaign, the once-dreaded house didn't sell. Offers were lower than expectations and, according to the agent, only bargain hunters were active in the market. Given the present situation, that was probably a good thing but the funds would have been useful to clear some long-standing, medically-induced debt. Even the dog kennel failed to attract bidders, a sure sign of severe decline in the housing sector.

Heating and sleeping.

It's been difficult to keep the kitchen warm with a portable electric panel heater. Fortunately, a recently purchased and installed 'split system' heating/cooling air conditioner has made a huge difference and our kitchen is now pleasantly warm. That's where 'the carer' sleeps, downstairs was much too cold and the thought of him sleeping in a carpeted bedroom with access to that ever-distracting computer caused way too much anxiety. So, every night for the past few months we drag a mattress into the kitchen and that's where I sleep. Our patient patient sleeps comfortably on a mattress on the wooden floor of his old bedroom. That room is kept warm using an electric column heater (or two); door closed to keep in the heat and window slightly ajar for fresh air. The gas central heater remains idle, for fear of the dust it may blow around and the smell that it might generate. Our winter gas bill is down and the electricity bill is sky high.

The state of the ation.

© 2012, Ben

Trepidation consultation classification,

   Medication sedation constipation,

Consternation agitation pacification,

   Hesitation vacillation frustration,

Imagination expectation articulation,

   Deliberation speculation meditation,

Regulation obligation complication,

   Marginalisation separation ...

      Isolation.

Determination!

(Living with illness.)

A welcome week of winter warmth.

Coconut palms.

A week at Trinity Beach was a welcome break from the routine of the past few months. The temperature was warm but not humid and it was safe to swim at the beach at this time of year. The normal exercise regime was only slightly interrupted by outings to the Cairns Tropical Zoo and a visit to Green Island on the reef. The fishing rod remained in its bag and it was only by chance, and on the final day, that we found a local fishing spot, complete with customary "beware of crocodiles" sign. Far north Queensland was a pleasant change from the cold, wet southern states, especially now that cool and fresh are no longer sought after. We're told it's not so pleasant in a few months time, when the heat and humidity increase dramatically, and marine stingers float around the ocean. We figured we could travel north in winter and south in summer; if only it was that simple! Nevertheless a return trip to Trinity is now on the agenda, as is a return trip to Tassie.

Blue Lagoon resort.

The pool at night.

Trinity Beach.

August update.

Our patient has improved over the past few months. The crisis phase is over and we're into a recovery phase of unknown duration. Weekly medical consultations and daily medications have restored equilibrium, effectively flattening the highs and lows, but more time and effort is needed to regain full health and independence. Ben has spent much of the past few months in our kitchen and occupied himself with yoga, breathing exercises, dance practice, eating well, tidying and cleaning. We visit the shops every few days; to buy groceries and eat in the food courts. He doesn't like to read and watching videos makes his neck uncomfortable. He does like to draw occasionally. Decisions, even basic ones like what to wear, are difficult to make. Social visits and outings with friends are rare. The most recent invitation was rescinded at the last minute leaving him all dressed up with nowhere to go. The substitute was evening yoga practice in the kitchen with dad. To break the routine, the two of us are heading to Trinity Beach in Queensland for a week.  Ben's looking forward to warm weather, swimming and maybe some fishing.

Exercises.

Yoga, stretching and breathing exercises take place at various times during the day, either before meals or no sooner than two hours after. The breathing exercises* require simple devices and hence are solitary activities. Participants are most welcome for yoga and stretching. Usually there's one extra participant but we've had up to three, which is probably the limit for our kitchen. The parquetry floor is ideal for exercise and a couple of camping mats are useful for floor work.

* The breathing exercises were to aid recovery from a chest operation nearly two years ago. The devices remained unused for a year and a half but, since May, have been unpacked and used every day.

Indecision.

These days, much of our time is spent in the kitchen. Besides hosting the usual preparation, cooking and eating activities, our kitchen has become a medical centre, a place for yoga exercises, a bedroom and the focus of much anxiety about tidiness, organisation and temperature control in the colder months. Time passes slowly in the kitchen and even simple decisions become surprisingly complicated under the influence of lingering illness and the combined effects of several medications. Is that something worth writing about? I'm not so sure.

The final post.

Ben's in Tassie - The final post.

This story began with Ben riding onto the boat and sailing to Tassie. Lots of people have holiday adventures like that but our traveller, after years of medical concerns, had health on his mind. Now, nearly 18 months later, he's back on the mainland and health is still a major concern. The good news is that the worst of the recent health crisis appears to be over and the slow process of recovery has begun. It's time for the Ben's in Tassie "travel blog" to come to a close. Ben may one day write his own story. He does write, or at least he did last year. We'll finish with a favourite photo taken at The Sideling when the trip began and another taken recently from a warm sunny Weldborough looking eastwards towards Little Plains.

The beginning.

The end.

Farewell to Weldborough.

The weather has been kind with cloudless blue skies but the air has been bitterly cold. Last night the pines, or maybe it was the redwoods, played their games making blustery winds sound like rain. Yesterday lunchtime, the little black Honda had a final run up through the pass, down into the valley and back. Even though the bike ran well, its rider, now more experienced, found little enjoyment in the trip. Memories were sparked by places all along the road; exploring the mossy green myrtle forest, phoning home from the scenic lookout, climbing to the former campsite high above the plains, chasing the rumbling red monster down the highway, stopping for fuel at the roadhouse, dining at the dairy cafe.

The cottage has been cleaned and furniture rearranged. The car, converted to "cargo mode", is crammed with possessions. With a little help from a friend, the bikes have been loaded onto the trailer and safely tied down. Trailer wheels are firmly attached and will be re-checked en route to Devonport. A few items have been left in storage in case we decide to fly-drive one day: a large tent, camp stove and all the fossicking gear. Other items have been given away, including food which some of the locals were grateful to accept.

It's cold in the cottage. The fire was never lit during our stay, the electric heater, used sparingly, is off and several layers of unfashionable clothing keep the wearer reasonably warm; except for the fingertips because it's impossible to type while wearing gloves. Cold fresh air was one of the original goals of the trip but ideals have rapidly shifted recently and I'm stuck in the past again; picking up the pieces and struggling to understand what's happened.

Through the window, across the cemetery road and a now-vacant cow paddock, beyond a row of pines and myrtles, the white walls of the hotel shine in sunlight. The orange-capped phone box, a reassuring distant glow at night, stands empty. With nearly everything packed, there's not alot to do: no dog to be walked, no one to hunt gems with and even the hotel is closed on Mondays during winter.

Evening descends at 5pm, it's perfectly still outside with crystal clear skies and the prospect of a decent morning frost. Due to poorly-timed generosity, the larder is empty and tonight's dinner is a toast medley: toast and peanut butter for entree followed by toast and vegemite for a tasty main course followed by toast and blackberry jam for sweets. All washed down with a steaming mug of Earl Grey to cure hiccups from eating too much toast.

Another winter solstice.

© Ben. 2012.

It's the shortest day, darkest day, not the wettest day but certainly very damp, not the best day that's for sure and last year's was better by far. Despite the dismal weather, Ben's improved these last few days but we're told recovery may take many weeks or months. According to the pamphlet, three people in a hundred suffer this kind of illness. Of the three, only one will recover fully and never experience it again so diligence and great care are most definitely required. Well-meaning efforts to placate and jolly him through will not be enough, we have to trust the medical advice. Looking forward to longer, lighter, drier and happier days. 

Still unwell.

© Ben. 2012.

Ben's at home in Melbourne and still unwell. Nursing staff visit each day and he's also seeing doctors in Box Hill.  Always very quiet, he sometimes does some drawing. Books, videos, TV, motorbikes are all of little or no interest at the moment. Conversation and decision-making are both extremely difficult. He walks the dog most days and we're covering longer distances each time. Doctors continue to adjust medications to find which works best for this particular patient; the latest medication appears to be OK with fewer unwanted side-effects. It does make him sleepy but hopefully, while resting, it's changing the chemistry so the ever-present sadness and worry can be managed.

Spirit of Insomnia.

Another sleepless night as the boat plies its way across the strait at a leisurely 23 knots; smoothly riding a reported three metre swell with just enough sway to make you walk like a drunkard. The “cheap seats” are at the noisy vibrating end of the ship, they face backwards and, if the wind happens to be aft, exhaust fumes sometimes waft inside. A higher deck is mostly deserted but the benches are narrow and hard and there are other impediments to sleep: metal fixtures vibrate loudly at regular intervals and sliding doors crash open and closed; and an empty video game parlour crammed with brightly lit machines that play inane sounds all night long.

Padded benches just under the “do not sleep here” signs in the lounge are more comfortable but word has got around and all spots are taken. There are comfortable benches further along but TV screens blaze throughout the night and it’s impossible to sleep to the sound of long-running infomercials promising healthier skin or better-toned abs. A few screens are tuned to sports channels and it is possible to doze lightly during rugby.

Other insomniacs wander the decks; some brave the outdoors to sample the bracing night air and smoke a cigarette, others happily tell you about free tea and coffee available in the diner before it opens for breakfast, others do Sudoku and one nerdy person whiles away the hours writing.

Of course there are cabins which, for extra cost, provide a proper bed if you don’t mind sharing with strangers of the same gender. Some might like it but I just feel uncomfortable. Once, owing to a fortuitous free upgrade, I travelled in a deluxe cabin complete with porthole and situated near the pointy end of the ship. That’s the way to go if you can afford it! However, if “day tickets” were available for night sailings, I’d buy those, since a good night’s sleep is a very unlikely prospect.

Jazz leaves Tas.

Destructing the
dog house.

Full load - riding the
bump stops.

Room for two only.

Rest break at Myrtle Park.

Waiting for the boat,
Devonport.

Jazz likes this colourful "beanstalk" house in Devonport.