Take Two

Passing the year mark in any disease is usually a significant benchmark. For our crew, May 2017 marks the 365 days that we have cruised with a type-one (T1) diabetic. Anyone familiar with diabetes is aware of the pressures on a parent to successfully manage the illness, particularly during the initial period of understanding the disease, calculating carbohydrates in the diet and administering the necessary drugs. With a T1, the learning curve is steep – and getting it right is essential.

For those unaware of the day-to-day of supporting a dependent diabetic, the regimen involves routine blood checks to verify the level of glucose in the bloodstream – too low and the patient can “crash,” too high and the body starts to build toxic levels of ketones in the bloodstream. If unchecked, the stress on the body leads to long term organ damage. Continuous monitoring of food intake is essential to running the right insulin-to-carb ratios – carbohydrates have to be precisely measured and a level of daily intake has to be maintained. And of course there is tell-tale sign of a diabetic – the hypodermic needle.

Our story started a year ago in Thailand, on the verge of a near-catastrophic decision to go to sea. At the time, Braca was showing signs of increasing illness but we were unable to identify the cause. As anyone who has experienced diabetes knows, the symptoms slowly creep up you. At first there was increased thirst and increased urination, understandable in a move to the tropics. Then he showed signs of decreased appetite, but young children are notorious for being picky eaters. Then he started to become lethargic and showed little interest in normal social activity which we interpreted as boredom, understandable with a change in environment. Realizing something was going on, either physical or emotional, I took him to the health clinic and the clinician diagnosed him with vitamin deficiency. We got a small box of multi-vitamins. Regardless of supplements, things started to get worse. He started bed-wetting, sleeping during the day, refusing meals altogether; things weren’t right. I took him to the international hospital and the physician diagnosed him with throat ulcers and constipation. “One week,” the doctor promised, “and he will be back to normal.” We left with an enema and a prescription for oral thrush.

Meanwhile we continued to prepare for our season ahead, a year-long voyage that would take us 12,000 miles across the Indian Ocean. Provisions were fully stocked, a multitude of boat maintenance requirements had been ticked off the list, 850 litres of diesel and 1400 litres of water sat in our tanks. The boat was set to go, and so were we. Ahead lay the colours of Sri Lanka, the aquamarine necklace of Maldives, the isolation of Chagos and the challenges of Africa. After all the pressure of constant work on the boat and concern for Braca, I felt like leaning out over the pulpit with arms reaching out to the sea and yelling at the top of my lungs, “Indian Ocean, thanks for waiting. We are finally on our way!

We cleared customs from Thailand on the 10th of January 2017 after getting the green light from the physician and sailed to our departure point. Still, I had a nagging feeling that things weren’t right. The evening before departure we wandered around a local carnival, trying to get into the festive spirit but Braca kept dragging his heels and complaining that his bones hurt too much to walk. As we shouldered him through the crowd, apathetic and lethargic, neither of us felt confident that his condition matched his prognosis. Then things began to spiral. We were half way through his meds but he was still moping around and looking miserable. During dinner, he violently vomited at a stall-side market and we whisked him back to the boat, tucked him into bed and tucked ourselves into the internet. Lethargy. Weight loss. Increased thirst. Increased urination. None of his symptoms matched the doctor’s diagnosis. What we did come up with, however, was unimaginable: Addison’s disease, depression, diabetes, or cancer. Regardless of the doctor’s assertion that all would be cured through prescription pills in a week, we began to question his diagnosis and in a defining moment we turned back from the sea. It was a decision that probably saved our son’s life.

At first light we pulled up anchor and raced back to Phuket. During the night Braca had slipped into a heavy, rhythmic breathing pattern unlike anything I’d witnessed before and I was manic with fear. Having already cleared out of the country we were now illegally back in it, but we disregarded customs protocol and raced into the paediatric department at Bangkok Hospital in Phuket. The doctor concurred: Weight loss, vomiting, and rapid breathing were not signs of a standard oral infection, nor was the hyperventilation or dehydration that he was now expressing. Braca was immediately whisked into the Intensive Care Unit and dropped into a flurry of drips, drugs and needles. Our son was diagnosed with Type 1 diabetes and was in critical condition. With blood glucose levels sky-rocketing and severe ketoacidosis, he was at the final stage before system shut down. “Without sufficient insulin,” the doctor explained, “your son’s body has been unable to process sugars and he has been burning fat to survive. As a result, the ketone waste has been acidifying his blood and if untreated, he will quickly go into a diabetic coma. People can die from ketoacidosis.” Through a thick mist of shock and disbelief, we numbingly fell into an alternate universe, vaguely aware that our plans and lifestyle had been dashed on the rocks of an incurable disease.

Four days in intensive care with a four-year old is one of the saddest, scariest experiences any parent can go through. I sat at his bedside and watched him sleep for hours on end, an enthusiastic, energetic little boy zapped of all his spunk and spirit. Trails of tubing spiralled from his body, hooked up to a complex assortment of beeping and blinking machines. At the same time, it was a relief to be in the hands of medical experts and under proper care after the dizzying weeks of confusion and helplessness. Neither of us had imagined that he had such a serious illness; we had scoffed at the list that our online research predicted. I remember looking at my husband and saying, “Surely none of this applies to our son!” We never imagined the worst, but it seemed the worst was now upon us.

Following his period of stabilization, we were transferred from Phuket to Bangkok under the care of the diabetes specialists at Bangkok Hospital. The luxurious five-star accommodation notwithstanding, there were some significant drawbacks to our situation. For one, when discussing medical education and treatment, language fluency is a must. I sat through sessions where the diab-specialist smiled widely and repeatedly pointed to a pages in a booklet translated to English, without being able to discuss the material or answer a single question. The nutritionist walked me through lists of diabetes-approved foods, none of which fit our western diet. The doctor was very knowledgeable but her ability to transfer her level of understanding to me was very poor. Given I had travelled all the way to Bangkok to get training from the top experts in their field, a week into the program and I was still mystified about the disease. Gradually Braca’s energy returned, and he took on the appearance and attitude of a healthy four-year old; keeping him entertained in hospital was becoming more and more challenging. We both wanted out of the sanitized walls of the hospital, but I was far from being confident that I could take him into my care.

As a parent, it is mindboggling to lose the confidence of being able to care for your child’s basic needs. I would have to get comfortable pricking him for blood, jabbing him with a needle, and micro-managing every aspect of his dietary intake. I would have to constantly survey his body for signs of a low. Is he sweating, pale? Are his hands shaking? Did he simply trip or was that the result of a sugar-crash? Having a four-year old self-diagnose is an impossible task, so I would have to become his internal monitor from the outside. And I would have to become familiar with the word no. “No, you may not have a piece of toast.” “No, you may not have that apple.” “You may have water, but no, you may not have a glass of milk.” Regimen and restriction – welcome to our new world.

We were finally booted from the nest following three weeks of hospitalization and rudimentary training acquired predominately through sign-language. We were discharged, but we were not allowed to fly. Before we could cut the umbilical cord to our medical support team, we needed to prove we could keep Braca stable under our own care. Excitedly we packed our bags and headed for a nearby hotel, ready for the next step. Rather than glide, we crashed hard. Not five hours under my supervision and we were racing through dense traffic back to the hospital with severe food poisoning. It was a painful but important lesson learned: caring for a diabetic is hard; caring for a sick diabetic is ten times harder.

Over the weeks that followed we learned to take small steps, we learned to deal with each problem as it presented itself to us, and we learned not to look too far into the future. Our small steps took us further and further into Bangkok’s crowded streets, down muddy canals, up towering golden Buddha’s and through vast shimmering temples. We set out each morning with our tourist map, our insulin kit and the doctor’s direct number. Day by day we crossed off the list of Bangkok’s finest attractions and wrote down blood levels and calculated insulin doses. At the end of two weeks, we were ramped-up and touristed-out. We’d proven to the doctors and ourselves that we could fly. Which brought us to our next quandary: Where do we fly to?

We looked at our options: Expatriation to America, repatriation to New Zealand, or to continue under the support of the team in Thailand. Each had its merits and its drawbacks. We’d been in contact with the Madison Clinic for Paediatric Diabetes at UCSF, a leader in children’s diabetic research and treatment, and Braca was accepted into their program however we weren’t guaranteed medical insurance coverage. We could repatriate to New Zealand and the diabetic team at Starship was ready to receive us, however it meant leaving the yacht in Thailand for an undermined amount of time and our home in Auckland was rented out. We could continue under the care of the Thai diabetic team and continue to live on-board our boat, already prepared and provisioned for us, but we were not prepared to transit oceans with a newly diagnosed child so travel would be restricted to Thailand for another year; plus, a return to New Zealand would get us under the care of our main medical support team and we’d get another attempt at comprehensive training, this time in our own language.

Eventually we chose repatriation. It is worth noting that our insurance was hoofing the bill for our medical expenses and incidental costs. In a stroke of luck, it was first year we’d ever purchased medical insurance as an express requirement for visiting the Chagos archipelago, a group of atolls in the middle of the Indian Ocean. Due to this planned stopover, we were absolved of paying the substantial bills we’d incurred through our ordeal. After a mere month on their books, we called on TopSail for assistance and they stepped up to shoulder the considerable burden of our bills. Their final action was to assign a flight nurse to escort us back to New Zealand. While they didn’t say it, their unspoken words were, “You are Starship’s problem now.”

As our cruising companions raised their sails and caught the wind westward across the Indian Ocean, we folded our wings and flew south. It is impossible to speak highly enough of the Starship, New Zealand’s primary paediatric hospital, and its paediatric diabetes department. The team had been briefed on our case and were ready for us when we got there. The day following our arrival in Auckland, we were readmitted into hospital for observation and training. Our first session with the senior consultant was our next defining moment and a turning point in our attitude towards our future with diabetes. While we were still reeling from the knowledge that diabetes was a full-care, incurable disease, the diabetes team were used to supporting families of diabetics. In New Zealand, that often meant people living in rural townships or remote island communities in the outlying Pacific Islands. Our case was unique as a cruising family, but our obstacles were not unknown. While we were still grappling with the idea that diabetes had changed us forever, it was the expectation from the diabetes team from the outset that we would be returning to the boat and a life afloat. As soon as we were admitted, the conversations were optimistic and encouraging: Our training program would be concentrated and accelerated, and we would be issued a supply of insulin to last us a year. The resounding message was, “Diabetes should fit into your life, not rule over it.” So, with their unwavering encouragement and support, we started to let our dreams seep back out of the box. In doing so, we had to confront our own level of confidence and ask ourselves the questions: Could we return a life on-board the boat? How capable were we care for our son completely removed from medical support? What if he became ill and we were faced with a situation we were too inexperienced to handle?

In order to answer these questions, we needed a trial run. A month after arriving in New Zealand, we booked ourselves on a three-week campervan tour of the South Island. We drove the length of the island and enjoyed being tourists in our own spectacularly beautiful country. It was not only therapeutic for our over-stressed souls, it was bonding for a family who had been split up for much of the preceding ordeal. Finally, we were finally cut loose to laugh, play and bond as one unit again.

After an amazing tour de force of the South Island highlights, we’d proven ourselves capable of supporting Braca outside the support of a trained medical team. Now that we’d proven our capability, it was time to get down to logistics. We’d become used to life with a diabetic, but we needed to know if we could transition from a life ashore to a life afloat. Diabetes is a common disease, but who was out there managing the condition in the cruising community and what was the experience like for them? What did they need to account for in restricted confines and restricted resources? Was there any inherent risks that cruising presented that we needed to consider? All of the cruising diabetics we were introduced to were adults who had been managing their condition for years. However, diabetic children are different since they have smaller, less stable metabolisms. Furthermore, a diabetic child at sea is removed from all traditional support systems. Our key question was, “How far from expert care and support should a newly diagnosed four-year old diabetic child travel?”

There were also practical considerations we had to address. We needed a refrigerator that we were confident in as we would have a year’s supply of insulin on-board. A replacement was ordered. We needed to guarantee communication with our diabetes team should any issues arise, and our current SSB radio was unreliable. We upgraded to a satellite link via an IridiumGo. We needed a year’s worth of supplies that were typically dispersed via one-month prescriptions. Our all-star diabetes team and friendly local pharmacist stocked us with a two-year supply of insulin, glucose monitors, testing strips, injection pens, ketone strips, emergency glucagon kits and an assortment of other diabetes paraphernalia. In a whirlwind of planning and purchasing, we readied ourselves and spread our wings. We may have to find a new route for the season, but these four seabirds were heading out to sea.

Which direction to look, however, was less straightforward as choosing a route for what remained of the year required a number of considerations. We were too late to do follow our initial Indian Ocean itinerary and an attempt to re-join the 2016 fleet would mean a long ocean passage and missing out on some of the highlight destinations completely. At the same time, another season in Malaysia and Thailand did not appeal to us. Given we would be traveling out of the main cruising season, where do we go? Sumatra popped up on our radar. We could delay our Chagos permit until the transition season and the Maldives could feature in our route after all. In April, just two months after our repatriation to New Zealand, we returned to the boat; in June, just four months after diagnosis, we began our 2016 cruising season. The following six months cruising was one of our most stunning experiences to date and an example of what can happen when the best laid plans fall through. Sumatra, Cocos Keeling, Chagos and the Maldives all proved to be top class cruising grounds and being there on our own was a testament to what is achievable against the odds.

So, what is it like sailing with a diabetic? Some of it is standard diabetes stuff: We test his blood glucose levels four to five time a day and he has an insulin injection after every meal. Braca has learned to identify when his sugars are low and has learned to say no when offered sweeties by well-meaning locals. Physical activity drives him down quickly so we carry a high-sugar “quick fix” in an emergency kit wherever we go. Some of our issues are unique to the cruising lifestyle: The stores of most long-term cruisers are stocked with pasta, beans and rice which lead to a carb-loaded diet. Fresh produce is often hard to come by and few island countries offer healthy snack alternatives. While cruising in isolation of support was initially a nerve-wracking experience, we quickly realized there were many advantages to our sheltered situation. It provided us a controlled environment where we could learn the nuances of Braca’s condition and the unique characteristics of his body. Unlike a child at day care or school, Braca is rarely out of parental supervision so we don’t need to worry about a caretaker mistaking a low, forgetting to take a reading or miscalculating insulin. Braca never goes to cake-fuelled birthday parties and is relatively incubated from the typical flus and colds that run rampant amongst school children. Diabetes is a life-sentence no doubt, but we learned that it is not a sentence to your respective prison. The verdict and the terms of its parole are defined by you.

This month marks our twelve-month milestone of cruising with a diabetic child, and our phoenix has indeed risen from the ashes. We started with small steps through those dark days when our future seemed so bleak and our dreams were buoyed by an encouraging family and supportive medical team. Our plans were based on risk management and the mitigation of any foreseeable complication, as best we could identify them. Finally, we trusted ourselves to let go of uncertainty and released our shore-bound tether. One year ago we headed Atea’s bow towards the open sea and found peace and simplicity in the wide embrace of the ocean, and through the experience we learned what the doctor said was indeed true: Diabetes should fit into your life, not rule over it. However you choose to live it.

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Shall We Rally?

The decision to join a cruising rally is often a process of weighing pros and cons and finding where you fall in the balance. IMG_7586I like to think I have a bit of pirate in me, daring to fly my own battle flag, but I lowered that weather-beaten rag from the cross-trees and signed up for the 2017 Sail Maldives Rally. There were two driving factors the decision to join: One, it was essentially free and two, it promised an extravaganza unlike anything the country has ever seen. Swashbuckler or not, who could miss a good party? A promotional article published by the rally’s marketing director, Sarah Harvey, stated, “This is the largest mass-participation event the Maldives has even seen. Imagine 100-plus yachts cruising the Maldives’ waters… This will be [an] unforgettable event and the whole country is getting ready to welcome the participants from around the world.” Furthermore, the article boldly touted, “By joining the first ever Sail Maldives yacht rally you’ll be playing a part in making history, since it is the first time anything like this has ever taken place in the Maldives.” We were going to be Mavericks. We were in.

Having made the decision, we were aiming for end of January for kick off. We’d spent most of the 2016 cruising season exploring islands in the eastern Indian Ocean without the company of other cruisers and, having already spent three months in the Maldives, I was eager to drop anchor in a crowded lagoon. IMG_7822.jpgThere was only one problem: Where were the participants? We were down to the official start date and there were only three yachts on the list and one, I knew, had already dropped out. Considerable marketing had gone into publicizing the event and there had been a lot of queries by interested cruisers; surely a percentage of those would take the bait. The rally rolled the start date back a month, hoping that late February might ensnare a larger school in its net.

We pulled into Uligan mid-February, the northernmost entry point, excited for the show to begin. We were forwarded an email sent by the first yacht to arrive on scene, a Scottish crew on SV Ngawala:

“We arrived to meet Assad [our yachting agent] and his colleagues who have been tremendously hospitable. The clearance was quick and hassle-free and we were even brought a bouquet of frangipanis and fresh coconuts. In the past three days, we have enjoyed a fish BBQ hosted by the local mayor, visited the nearest resort, learnt how to fish, climb a coconut tree and swam with dolphins and manta rays. We are looking forward to meeting everyone and enjoying what promises to be an amazing rally.” 

The organizers kept touting a hundred boats on the roll call and we expected to have to muscle our way into the anchorage. IMG_9516The day of the second official start date, just two yachts were lined up. The start was again delayed to wait for yachts held up in Sri Lanka and purportedly on their way. Over the course of a few sunny, lazy days we watched the horizon and waited. Finally, far from full capacity, the nod was given and the 2017 Sail Maldives Rally officially kicked off at double our initial number.

Given our decision to join for social reasons, a team of four may sound a disappointing number. For us, however, that was a 400% increase in our social network. A small rally meant that we could travel comfortably together. In an interview with the rally’s founder, Ahmed Adeel states, IMG_9582“The sailing community is like a family, everyone likes to share their experiences with fellow sailors from all around the world.” We could build inter-yacht connections without being lost in a mariner’s metropolis and have genuine experiences with locals without drowning out the authentic in a whirlwind of ogling photo-hungry tourists. Continuing, Adeel adds, “I thought of creating an event where sailors can gather together in the Maldives, have a great holiday and explore the beauty of the country. There is no better sailing destination anywhere else in the world.” With 30°c above water and 30°c below water, with 1,190 tiny islands sprinkled across a territory surrounded by 99% seawater, guided by an in-country host such as Sail Maldives Rally, there truly is no cruising destination like it.

As the weeks moved on we grew from a group of four to eight, and eventually from eight to twelve. The agenda for the rally was crammed with daily movement, local excursions and cultural activities. Over the course of two months we would be escorted by a rally boat from the northernmost atoll to the southernmost atoll, through a chain of palm-fringed islands that extend 1200 miles down the northern Indian Ocean. This rally boat, or “mothership” was it was affectionately called, was a 100-foot charter launch that hosted staff to guide and entertain us, complete with an onsite liquor license and fully stocked bar; a magnetic draw in a liquor-free country. The local community welcomed us at all the villages on arrival with food, dance, and festivities. Our appetite for the Maldives wasn’t going to be whetted, it was going to be saturated.

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The pace at the beginning was fast. We moved almost daily to keep up with the rally schedule and were entreated to an amazing display of island hospitality.As we travelled from island to island, we were greeted ashore by a line of women and children holding flower-bedecked coconuts and shell-studded wreaths, entertained by dancer and drummers, fed fresh caught lobster and fish and guided through the township by our gracious hosts. It was hard not to feel humbled by the outpouring of gifts and gestures after a long succession of these events; this was not a government sponsored event and in all cases the budget came out of island council funds and the charity of the villagers it supports. All the effort that had gone into these elaborate events were done for our benefit at the request of the rally organizers, and we didn’t contribute a dime.

Long-term cruisers are notorious for being spendthrift. While there are few truly destitute sailors these days, all of us are trying to extend our time afloat. Our decision to join the Sail Maldives Rally was made easy by the fact that we didn’t have to pay anything extra (perhaps I should say, we were already paying enough). Whether we paid our fees directly to an independent agent or to the rally, the total cost was the same. Bringing a yacht into the Maldives carries significant costs in official permits and documentation, and a three month sojourn through the country costs about US$1,200 in cruising permits, anchorage charges, clearance costs, quarantine Inspection levies, and the list goes on. As a result, excess fees to join the rally would have made it cost prohibitive for many. Realizing this, the rally organizers put their own money forward to pursue their ambitions of making the Maldives an international cruising destination and paid for the cost of running the event out of their own pockets. In a late-night chat on the aft deck of the rally boat, Adeel explained that he had conceived of the rally a few years back and had dedicated the past year to arduous government meetings trying to persuade an uninterested body to support the venture. His goal was to prove the inaugural 2017 Sail Maldives Rally a success and get government aid for subsequent rallies. For this rally to succeed, the opinions of government decision-makers will have to be swayed or the rally will have to find a viable source of funding.

But for now, thanks to our hosts, we were livin’ large. We were being hosted in a country renowned for its cultural reservation and distance. Instead of the indifference reported by previous cruisers, we were flooded by warm hospitality in every village we visited.IMG_9104 Having spent several months in the country on our own, I realized what an honour it was to be shown customs that we would not have been privy to outside of the rally; rather than quiet reserve, we watched band after band of local drummers kicking out rhythmic beats and writhed with men and women on sandy shores to a movement never seen before and elaborate costumes we will never see again. The rally also introduced us to islands either prohibited to foreigners or too convoluted to attempt to enter on our own. The atolls can be geographically restrictive and difficult to transit without local knowledge. The anchorages are often deep (25-30 meters), the passes shallow (2-4 meters), and the lagoons filled with an impenetrable labyrinth of coral bommies. Because of this, many read the notes of other cruisers and follow an established path year after year. In joining the rally, we were shown islands otherwise banned and accepted into communities unused to foreign tourists. As participants we were privy to a side of the Maldives previous cruisers had never experienced, all thanks to the Sail Maldives Rally.

Joining a group, however, comes with its share of conflict and a rally at its inception is inherently fraught with errors – the learning curve was steep. Misjudgement in planning and poor communication led to periodic conflict between some participants and the organizers, and eventually the pack split into those whose glass was half full and those with glass half empty. To their credit, the rally team was responsive to all feedback and adjusted their agenda as requested but most of us were ready to kick our internal engines into idle after a month and a half of fast-paced movement and continuous engagement. Our tight pack of twelve split up. manta4.jpgSome yachts continued to follow the rally and the village events, others ventured off to explore the underwater scenery and search for the manta ray and whale shark found in the region. The central Maldives is a world renowned dive destination and for those of us who like to be submerged under 30 meters of water; this was our spot. The central atolls are the country’s hub of tourism and resort after resort lay perched on every visible patch of sand, running their wooden tentacles out into the sea. Live-aboard dive boats crisscross their aquatic tracks throughout the surrounding sites. Breaking up the group to accommodate the yachts was a good tactical strategy and allowed everyone time to follow their interests and explore at their own pace.

As we entered the southern atolls, the majority of yachts regrouped. By this stage the rally support team had disintegrated into a one-man band. Unfortunately, the mothership suffered irreparable damage to its generator and limped into Male midway through the rally. The ship, and all crew with it, were left behind. It was a blow to the rally and a serious loss to those of us who had become regulars on the traveling party barge; no more potluck dinners on the top deck, no more evening cocktails shared bar side, no more late night disco parties. We left behind the charming local crew who supported us along the first part of our journey. Our man-on-the-ground and respective dog-handler, Ahmed Hanyff, continued to travel with us as a guest on one of the cruising boats but by this stage all events ceased and the rally unofficially ended from this point forward.

While the disintegration of the rally at the midway point could be perceived as a disappointment, particularly for the organisers, DCIM127MEDIAI believe we got the best of both worlds. Our eyes were opened to local custom and culture through community events and we developed some tight bonds with local Maldivians, while at the same time getting the freedom to roam the atolls at our own pace and discover a side of the Maldives unique to us. With the rally we experienced full and fast, without we enjoyed slow and select.

I don’t know what Adeel and the Sail Maldives Rally team will choose to do, or what the fate of Sail Maldives Rally will be. I like to drink from a glass half full, and feel that we got everything that we wanted from the rally. However I do not imagine that the organisers got what they hoped for this year, nor can I see that the tremendous effort they put into pulling this together paid off. I hope that as guinea pigs we’ve helped pave the way for future rally participants and demonstrated that the Maldives offers the perfect playground for a successful rally event. For their sake, and for the sake of future cruisers, I hope to see a 2018 Sail Maldives Rally with lessons learned. I will most certainly stow my pirate’s hat and pull the free rally shirt over my shoulders if the opportunity presents itself again. Cruising the Maldives just isn’t the same without it.