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Ben’s story

1 st Haemophiliac competes in the gruelling Clipper Round the World Yacht Race

I’m Ben, I have mild haemophilia A (levels of around 6%) though through childhood I suffered so many repeated bleeds, especially in my ankles and knees, that consultants kept saying I had symptoms of severe haemophilia. They regularly tried to re-diagnose me, always to get the same diagnosis. I also contracted hepatitis C through contaminated blood products in the late 70s or early 80s.

I’m now 39 and I no longer suffer regular bleeds – in fact the haemophilia causes me little trouble in my day-to-day life (perhaps because I am not that active anymore). However, the psychological burden of hep C weighed very heavily on me.

Then in 2011 my hep C consultants at St George’s Hospital in Tooting, south London said they had started to have some success in clinical trials of a new drug and, though these were only 50% with the strain I had, they felt this was just enough to offer me the chance to join the trials. It was to be a double blind, year-long treatment programme involving combination drug therapy and would have severe side effects. I wasn’t expected to be able to continue working in full-time employment.

After a few months my consultants were able to confirm that I was on the active drug as the hep C count had dropped. The side effects were innumerable and highly debilitating; fortunately I had a supportive employer – I commute an hour each way into London to work for a small financial services company. I used the routine of commuting and working 9–5 as a means of maintaining some structure and focus in my life, though I was not a great deal of use in the office and was found asleep on the toilet floor on a number of occasions.

Sadly, a few months after completing the trial the hep C returned. This was a huge blow and having felt I was close to death on several occasions during the trial I swore I would never go through it again.

A few months later, I was offered the chance for a new trial, which was having more success with my strain of hep C; again a double blind combination drug therapy. I had started to recover from the first trial and was starting to get some energy and strength back. I thought I didn’t have much to lose, so went for it again.

It was soon apparent I was on the active drug again as my skin turned bright green! The side effects were terrible but not as bad as the first trial so again I was able to continue working.  Well, go to work.

I’m delighted to say this trial was a success; in fact they took me off the treatment a couple of months early. I’m now free of hep C! Once the medication had cleared my system and I started to build my strength and fitness again I quickly started to notice I had more energy than ever before and felt happier and healthier than I had known. I was surprised quite how much effect the hep C had been having on me previously.

It was the first time I’d been able to look ahead with optimism, though this was countered by feeling I may have missed my best years and maybe it was too late to find ‘the one’ and have a family. I also could remember very little of the three years I spent on or between trials and my life really had stagnated during this time. It was then that I stumbled upon the Clipper Round the World Yacht Race.

This is a 40,000 mile race in a matched fleet of 12 70ft stripped out racing yachts and is designed for amateurs; no experience is necessary! The yachts were moored close to my office so I went to take a look one lunchtime. I had no intention of getting involved, I had sailed once, 17 years previously, but it hadn’t ever really interested me. Then as I was reading about it on the way home that evening I started to think how amazing this was and how many people out there my age would love to do it but couldn’t due to commitments such as a young family, yet here I was with no commitments. Perhaps I owed it to all those who would jump at the chance to take it on myself? The next thing I knew I had booked an interview! I was now starting to realise that something like this was exactly what I needed to make up for lost time and get my mojo back.

I was offered a place subject to insurance and discussions between the Clipper Race and my consultants. I put them in touch and after a few chats it was agreed that I could compete but not on my chosen leg. The race is made up of eight stages (legs) and you can compete in any number of legs or do the whole race and become a ‘round the worlder’; more people have climbed Everest than sailed around the world. I had decided I could only do one leg, for financial and time off work reasons. I also thought one leg would be enough for me and that the likelihood of injury was so high I would probably be unable to do anymore.

Since I was only looking to do one leg I wanted to be put in awe of the true power of the planet and having been though the clinical trials I wasn’t really afraid of anything and knew I was able to push myself to extremes. This time I wanted to go the extreme, doing something I was proud of and wanted to share. I originally chose leg 3, crossing the Southern Ocean from Rio de Janeiro in Brazil to Cape Town in South Africa. The Southern Ocean is a famously hostile place with 20-metre waves that circle around the globe in the endless ocean.

Unfortunately this was vetoed along with the Pacific crossing because they are both so remote there’s no chance of an emergency evacuation. These legs also traditionally have the highest number of major injuries. I couldn’t argue with their logic so opted instead to go on leg 4, which is made up of three separate races and still involves going deep into the Southern Ocean for 10 days or so, the difference being that though we would be a long way off shore we would only be a few days away from help. It also had a huge bonus of competing in the Sydney to Hobart Yacht Race, one of the world’s premier ocean races and something many professional sailors only ever dream of.

I was very excited about this adventure and the new-found me. Who knew I was that guy, the one who actually does it rather than thinks about it!

Everyone has to do the same training regardless of whether you have never sailed before or are an experienced yacht master. This is to ensure we all do things the same way and because these boats are so powerful that many things have to be done differently to how you may have learnt on other yachts. Training is broken down into four week-long courses.  I spread mine out over 18 months to manage my holiday from work, give myself time to recover and ensure that my last week of training was not a year before I joined the race, which was to be November 2015.

My training was all based around the Solent, the English Channel and South Coast. I’d discussed what I was undertaking with my consultants and we decided that I should take an IV prophylactic prior to joining the boat to get my levels up as well as carrying some spare treatment with me. I also have chronic arthritis in both ankles, which usually swell up and cause extreme pain if I walk too much or give them a lot to do. To help manage this I was prescribed some anti-inflammatories, which I found to be a revelation and after a couple of weeks’ use, away from the boat, they actually left me briefly pain free for the first time in memory.

Level one training was a real baptism of fire. It was March 2014; the weather was very cold and stormy with winds up to gale force nine. There was a team of nine on the boat, plus the skipper. Most of us were total amateurs and ages ranged from early 20s to early 70s. We were all pushed really hard and made to undertake constant sail evolutions for no reason other than to drill the process into us and ensure we knew what we were letting ourselves in for. Several people on board quit during that week; I think we all questioned ourselves several times about what we were doing there! Physically and mentally it was one of the hardest weeks of my life, aside from times on the clinical trial. In an environment like that there’s nowhere to hide and you get to see your own as well as everyone else’s true colours.  I made some life-long friends that week and one girl in particular caught my eye. With my new-found confidence I asked her out the following week.

The following three levels of training were equally testing but gradually I was learning the ropes and making fewer mistakes. Many of us, myself included, suffer from seasickness.  It usually wears off after two or three days but during this time I felt awful and really wondered what I was doing – maybe this wasn’t for me after all.  Everyone has various ways of dealing with it. I take lots of seasickness pills and stay up on deck watching the horizon as much as possible. This is usually enough to stop me being physically sick but as soon as I venture below deck I can feel it approaching. The only solution is to return to the deck or lay down. Generally once you are in your bunk with your eyes closed you can hold it off, though I did learn on level two not to eat a large meal and then jump into my bunk; that was quite messy…

Each time you sail with a different group of people and learn different skills. I was also now going out with Lizzy from level one so had someone to share it all with. We always tried to train on separate boats: the Clipper Race discourage couples from sailing together as it affects the crew dynamic, and also we had signed up independently and thought it was important that we still both had our own experiences.

Clipper Race allocated each of us to a team in April 2015. It was an exciting day, full of ceremony and tension as you waited to hear your name called out by one of the skippers.  The 12 skippers are the only paid professionals on board each boat and so bear a huge responsibility. They had each been through a rigorous selection process and had beaten off over 300 applicants to be race skippers. We had no doubt in the ability of any of them and I had sailed with a number of them as training skippers. I was delighted to be assigned to Team UNICEF. UNICEF had just come on board as the official charity of the Clipper Race and had been given free sponsorship of a yacht; I was honoured to be racing as a UNICEF ambassador in UNICEF colours.

I joined my team in Albany, Western Australia at the end of November 2015. They had set off from London in August that year. It was remarkable to think they had sailed so far.  There are up to 20 crew on board and around half of them are hoping to sail around the word with the rest made up of ‘leggers’ such as me who are undertaking one or more legs.

We set sail on the 1st December and quickly settled in to our watch system. We operated two watches with half the crew in each. We then followed a rota of four hours on watch and four hours off with one six-hour watch each day, which gave us a chance to get some decent sleep. After each watch you come below deck, clamber out of your foul weather gear (foulies) and have a bite to eat before climbing into your bunk. You share your bunk with someone on the opposite watch. You are then woken about 45 minutes before you’re due back on watch so you can get up and ready and have another bite to eat. Given the time it takes to drop off to sleep you don’t get much more than an hour during each four-hour watch, but with the six-hour rotation you can get four hours and that makes a huge difference.

We ate little and often. You can burn up to 5,000 calories a day on board but big meals rarely sit well in rough conditions. Each day we also had an added specific role to undertake such as emptying the bilges, cleaning the heads (toilets), engineer, navigation or the big one, Mother.

When ‘on Mother’ you come out of the watch system and are responsible for preparing all of the day’s meals and drinks; you also bake a cake and two loaves of bread. Once your Mother shift finishes you then get a much-needed 12 hours off to catch up on rest.

All of the shift rotations are, however, for guidance only! If you’re needed on deck for a major evolution or an emergency situation you can be called up at any time and often extend your shift so that we have both watches on deck at once for half an hour to get things done safely, efficiently and quickly as possible.

To my great relief, seasickness was not a huge problem on the race. I did feel quite ill during the first two or three days of each race but was only physically sick once. I did my best to manage it and asked not to be rostered for many below deck roles in the first few days if possible; after all it’s not in the team’s interest to lose crew to seasickness.

After the first four or five days I also stopped thinking about how long the race would be, how long I had until we hoped to reach port, and was just thinking about the next watch, the next six hours off, the next Mother duty; it no longer mattered whether we would be at sea a week or a month.

My first race, leg 4 race 4 of the round the world series, was from Albany to Sydney. This was the race where we would venture deep in to the Southern Ocean and I hoped to see some big seas. I was not to be disappointed!

Here is the brief summary I posted on arrival in Sydney: ‘Made it! That was pretty epic. Thirteen days at sea, c 2000nm, the longest storm in history which we had to beat into for around four days, winds of 40–50 knots. Max wind on the race of 70 knots; I surfed the boat down 15m waves, there were even a few of probably 20m. We sailed up to the ice limit of 44.3° south, though the water and wind were not as cold as I expected. Realised a childhood dream of seeing an albatross at sea – they are big! They also do the funniest high speed running over waves if they get a bit too low. Sailing around the bottom of Tasmania and its beautiful and extremely rugged coastline was another highlight, as was seeing the very pretty silhouette of Sydney on the horizon on our final approach. We went wide on our approach so that we could come into Sydney harbour under spinnaker where we received a brilliant and emotional welcome from helicopters and planes doing flybys. Sydney harbour is buzzing with racing yachts ahead of the Rolex Sydney Hobart Yacht Race. A few of the professional race teams sailed over to us and gave us a standing ovation, which was very generous of them and a little overwhelming. It wasn’t until we berthed that we found out we had beaten ‘Visit Seattle’ and placed 6th. A brilliant result.’

Ironically the conditions we had on that race were much tougher and with bigger seas than had been faced on the whole of the previous race (leg 3, the Southern Ocean Sleigh Ride), which I hadn’t been able to compete in.

I was pretty excited and actually pretty choked. I had done it! I had sailed an ocean race in extremely challenging conditions. I had achieved a dream of surfing giant waves, I hadn’t got hurt and I hadn’t hated it. In fact I had loved it more than I had ever expected.

We now had two weeks in Sydney; it was party time! When you have almost 250 people who have all been through an amazing experience but deprived of alcohol for two weeks and with a thousand stories to tell, the stage is set for a pretty decent party. Added to this atmosphere were all of the professional race teams and supporters who were already amassing in the harbour and yacht club ahead of the Rolex Sydney to Hobart Yacht Race (RSHYR), which sets off every Boxing Day. During our stay the atmosphere around the yacht club ahead of the RSHRY was truly electric and like nothing else I have ever experienced.

Aside from the parties we had a lot of boat maintenance to undertake. First of all, at every stopover the boats are emptied of all kit and floorboards and given a thorough deep clean.  Though we clean surfaces every day, the boats get pretty smelly and mouldy. Then it’s down to repairing sails, rigging and deck hardware that has been damaged or broken. There is a team of professional riggers that follow us to each to port to undertake the skilled or major repairs, but all minor works or modifications are done by crew. We also lifted the boat out of the water during this stopover to reapply the antifoul, again all done by the crew.

My second race, the RSHYR, set off on the 26th December. To be part of this is a huge privilege: it’s one of the greatest yacht races in the world and a national institution in Australia. The distance is approximately 650nm and crosses the notorious Bass Strait, where you get wind over current, very confused seas and big weather. The 2015 race would prove to have some of the worst conditions for over 20 years, forcing almost a third of the 110 entries to retire. The summary I posted at the time encapsulates the euphoria I felt on arrival in Hobart five days later.

‘Tasmania! Rolex Sydney Hobart Yacht Race done! It was a hard race but you wouldn’t want anything else from such an iconic race. One of the proudest moments of my life to have competed in this race. We came ninth in the Clipper Race fleet but we sailed and raced well; Lady Luck was against us with a broken spinnaker sheet then an exploding tack block resulting in four spinnaker hoists and drops in under an hour at the start. This on top of the stress of broken engine controls leading up to the start which left us in the middle of 110 yachts with the engine stuck at full throttle and heading directly at the committee vessel. We also had no wind instruments other than looking at the windex on the top of the mast for the whole race and no updated weather files until day four. The storm on the second day in the Bass Strait was quite brutal and we all felt for the smaller yachts competing. Coming into Hobart surrounded by so many yachts and overtaking professional teams, then receiving the warmest welcome imaginable, was amazing. I don’t know the full placings yet but believe we are in the top third of starters. The party here is buzzing and doesn’t stop: it went right through the night and continues today with no lull in sight. NYE is going to be brilliant tonight! Happy New Year everyone.’

Hobart was a brief stopover; we would set sail again on 2nd January for my third and final race: leg 4, race 6, Hobart, Tasmania to Airlie Beach, Queensland.

This was supposed to be a nice downwind sail off the coast of Australia, avoiding the East Australia current, which was flowing against us. As the crews had found throughout, the traditional weather patterns were to elude us. We spent the majority of this race beating into strong headwinds. This can be tiring, as it means the boat is heeled over at 45 degrees or more and it can slam down onto the water from the top of each wave, sending a shudder and deafening noise through the boat; not easy to move about or to sleep. The helmsman will try to minimise the slamming but it’s not always possible and each helmsman has differing abilities.

We also had a knock down during this race. An extra powerful gust of wind hit us when we were already overpowered and knocked the boat flat into the water. I slept though it but people were hanging from the deck by their tethers and it took the crew 15 minutes to lift the mast from the water and right the boat.

Again my post at the time neatly summarises the events of this crossing: ‘So my big adventure is over but the fun continues! A good race from Hobart to Airlie Beach, Queensland. My third crossing of the Bass Strait, some fast upwind sailing, some fast downwind sailing. A couple of days of constant rain in high winds with little visibility and big seas washing over the boat giving the foulies such a soaking they stopped working. “Kitemageddon”, where we went through the whole sail locker more than once in 12 hours including kite wraps, kite holes and kite peels to get back to the best kite for the conditions –giving us five kite hoists in an hour. (A kite is a spinnaker.) Some great match racing, especially the light airs battle with IchorCoal where the wind seeker proved its worth. The heat was building all the way and on the last few days it was almost impossible to sleep, such was the heat below deck. Dolphins galore, a flying fish which hit Andrew in the face as he was helming and ‘Graham’, a parrot sized bird which was worn out and landed on my shoulder as I was helming. The beauty of the Whitsunday Islands and sailing through the Great Barrier Reef – it’s not been short of rewards! Airlie Beach is a truly beautiful place and I’m delighted Lizzy has arrived to share it all with me. Time for a holiday!’

I have since found the bird that landed on my shoulder was a black noddy, a seabird from the tern family.

During my time on board there were some real lows; these were generally born from utter exhaustion, constant cold and wet. The lows were difficult but you can’t dwell on them and you usually get over it on the next six hours off watch. It’s these difficult low moments that give you the incredible highs. The low points are also quickly erased in your memory by the highs and now I am struggling to recall any lows in much detail.

I had done it; my race was now over. I had mixed emotions on arrival at Airlie Beach. I knew I was going to miss my crew; they really are a great bunch and you really do bond with people in an environment like that. Thankfully Lizzy was due to arrive in a couple of days and we had a lovely holiday planned. I was ready for one!

I had also made it without significant injury! I feel very lucky to have avoided injury; a number of people in my team had been injured, from bruised ribs to torn knee ligaments and teeth knocked out. I did have a few big bruises on each race but so did everyone. Oh, and I lost a nail from my big toe. One reason I got away with little injury was that I would avoid going onto the foredeck in heavy weather. It is fun on the foredeck with waves breaking over you and becoming weightless as the deck falls away and I did get to experience it a bit when required, but it was also physically exhausting and a bit scary up there so I don’t feel too deprived! I had explained my haemophilia to the skipper and crew so they understood why I wasn’t to venture up there. I also gave the skipper and watch leaders a demonstration on how and when to give me an injection of factor VIII should I be unable to administer it myself.

On the final day of my last race my ankles started to swell and I was not really able to walk on them any longer. Half the time on board you are crawling or using your arms to support a lot of your weight. Even so, I can’t believe they lasted so long. Maybe there was sort of psychological control over them that had helped prevent them swelling previously and that block went as the end of my race was in sight? Once ashore they did continue to swell and I took the last of my factor VIII in case it was a bleed but I knew it was arthritis. I was barely able to walk for a few days and thought I had done some permanent damage to them but thankfully over the course of the next three weeks they gradually got better and now, with the aid of heel raisers in my shoes, are as good as they’ve been for many years.

There was no way I could have physically started the next race and done two legs back to back, so that helped temper my sadness at seeing them leave for Da Nang, Vietnam. I had also just asked Lizzy to marry me and I’m chuffed to say she said yes!

If I was able to take the time off work and had the funds I would jump at the chance to get back on board and do one more leg with my teammates, but that won’t happen, especially now I have a wedding to plan! But I will be living the race vicariously though Lizzy when she departs for her adventure on legs 7 and 8 in April 2016.

The race finishes in St Katherine’s Dock, London on 30th July 2016.

I’d like to thank Dr Austin, Dr Forton, Allison Greig, Nick Tatman and Clare Richards at St George’s NHS Trust, Tooting. And thanks to Lizzy, the Clipper Race, Cloughy and all my crew mates on board Team UNICEF for enabling me to undertake this amazing challenge and making it such a fantastic experience.