Darren Steven – Ironman; 10th National Deafblind Conference Report

Thanks to Paul Garwood from Senses, WA for the two following posts:

This is the story of Darren Steven’s journey in completing a full Ironman Triathlon. Darren has Usher’s Syndrome causing both significant vision and hearing loss.

The Ironman journey, Busselton WA Dec 4th 2016


The preparation:

My journey to complete a full Ironman (IM) started in August 2015. However, as a starting point I decided to complete a half IM as a prerequisite to the full distance. I managed to get some support with my training preparation through a local cycle & tri club. Finding likeminded people to support long distance triathlon can be quite difficult, so I took advantage of any offers made available. The half IM went really well, I was allowed under race rules to have 3 guides for each leg. I completed the half IM in a respectable time and felt confident (maybe a little overconfident) in my goal to achieve the full distance. I also completed the HBF run for a reason & the Perth Half Marathon. It was in the Perth Half Marathon that I picked up an injury which was to haunt me in the coming months. The ITB syndrome is a common running injury which can linger like a…anyhow, I pressed on with as much training as possible along with immense sessions in physio, massage & acupuncture. By now I was only four months out from the full IM. Not only was this injury causing me frustration, I also received a telephone call from the IM race director advising me I could only have one guide for the full event. At this stage I thought my race was already over, injured and trying to find one person prepared to complete this distance seemed an impossible task. I phoned around and approached my local Triathlon Club but with the time available and the event approaching fast all leads came to a dead end. Enter Paul Garwood, I had run with Paul in the HBF half marathon and found we worked well together as a team. Paul had offered his experience as a guide runner for future events, I had planned to use Paul for the Marathon leg in the IM. I phoned Paul and discussed my predicament, at this stage I was looking at pulling out. Paul advised me not to cancel and had a plan. Fortunately Paul keeps himself reasonable fit across all three disciplines (swim – bike – run) and believed he was up for the task, stating it is not impossible. Back on track but still injured I tee’d up sometime with Paul to practice Tandem Biking. Paul comes from a MTB background which helped with bike handling skills, but this did not stop us from coming off the road on our first session in high winds. Having survived our first & only bike session before the IM I felt my goal might just be achievable, however, we had yet to swim together!! Guide swimming relies on a reasonably simular stroke rate and lots of confidence from both parties. Being tethered to the guide via a leg rope attached to my waist along to his ankle can have its difficulties. Fortunately we had the opportunity to practice our swim on two occasions! Both of which were short and sweet and more importantly, successful. I was now beginning to believe we might actual make the start line.

Finally, transporting a tandem bike requires some thought. Paul was confident the Tandem would fit suitable upon his car roof rack. To ensure his roof was not damaged, Paul placed a large cardboard box on the roof rack, this worked with some significant tie downs and some innovation to boot.

Race weekend. 

The amount of logistics needed even getting to the start line is immense. First of all we arrived at the wrong address for our weekend accommodation. Paul described the look on the persons face as one of disbelief when we pulled up onto their driveway with the tandem on the roof. Once we found the correct address we then had to attend race registration in Busselton, a separate race brief, a tour of transition, hanging our race kit, and finally racking the bike. I was exhausted on the night before, without having even started the race.  As soon as I closed my eyes the alarm sounded, it was 4:30AM. Wetsuits, goggles, Tri suit, swim cap, and timing chip were all to hand, before I could even take in that this was the day, I was putting on my Tri- wetsuit. The race director advised us we would be starting our race straight after the pro groups at 6:50AM.  The hooter sounded and of we went, I was thinking ‘holly crap’ this is it!!! We had planned to stop at the 2k point which was going to be roughly on the turn of Busselton Jetty. I settled into a rhythm and felt in the zone, looking forward to getting to the halfway point and a motivational breather. This was not to happen, it transpired that the super-fast Age Group athletes all 1500 caught us on the turn of the Jetty and Paul decided to not stop at fear of us being trounced. Before we hit the shore I was thinking this was the longest 2K ever as Paul had not stopped as planned. So when we finally hit the shore I was very relieved and soon moving along the beach into transition 1. We had planned for 1 hour 30 swim but was pleased to have swam a 1 hour 15 which built my confidence going into the bike leg.

As we left the bike transition with a 180k ride in front of us the adrenaline was pumping. Our plan was to split the bike leg into 2 parts and not to think about the whole distance.  We soon settled into a comfortable cadence and started passing a few competitors. The ride was mentally challenging, to complete the ride consisted of two laps. When we started our second lap I was doubting my ability to continue turning the cranks for another three hours and often into a strong headwind.

No matter how comfortable your cycling shorts are nothing can prepare your bottom for 6 hours and 20 minutes in the saddle. The cheer we received both on route and when we completed the bike ride was simply amazing. I could not believe we had completed two out of 3 legs in just under 8 hours. I felt amazing and so glad to get of the bike, I started the run with flying confidence, but to my horror I had left my orthotics in my other shoes which were back at our accommodation. This affectively meant I was about to run 42K in running shoes without in – soles. However, we started really well and I felt my pace would not be affected by my shoe issues.  Unfortunately this was to last around 10k!! The dreaded ITB and a growing pain in my right knee became more & more concerning. Words can’t describe the agony of the next 32K, fading light took my remaining vision, and I was simply running empty & blind and not hearing a great deal. The course had distance markers, at one stage Paul thought we were on our last lap, this lifted my spirits until we worked it out we had in fact two laps to go. By now I was hitting the wall more than I have ever experienced, I had to take a breather and was strongly considering pulling out. The crowds cheered me on, they were getting to know me and could see my pain and suffering. This kept me going, I set myself small achievable goals of moving from point to point rather than laps this was more about travelling metres. I was already in a world of pain and by now not having any soles in my shoes were causing even more pain. Not hearing or seeing and in great pain I struggled on. I befriended an ‘ambo’ who strongly encouraged me to finish. Eventually we hit the final lap and I was told the finish shoot was in sight. The combined roar of the crowd and my immense pain caused a certain amount of delusion, suddenly I had crossed the finish line and became an Ironman. The rest is a bit of a blur, I became overwhelmed with emotion and cried, I felt absolutely beaten but the IM medal around my neck said I had won the battle.




The recovery: 

Sun burnt, barely able to walk, stiffer than any door post you could throw a stick at I awoke to realise it still hadn’t sunk in. We left Busselton like wounded warriors, we had been tethered/stuck together for 14 hours 42 minutes through hell & high water. It took me three days to walk properly by myself, my skin peeled for weeks, and I haven’t even thought about Triathlon!! This was by far the hardest and most challenging experience I have ever done in my life. I did IM the hard way but learned the impossible is not a fact, it’s an opinion.


The 10th National Deafblind Conference, Fremantle

Senses Australia was delighted to host “The 10th National Deafblind Conference in Fremantle”, Western Australia. The theme being ‘Celebrating Experiences across the Lifespan’. Delegates from around the world had the opportunity to connect with people who are deafblind, including family members, educators, allied health professionals, medical and nursing staff and researchers to learn more about this unique disability.


Our key note speakers were Dr Walter Wittich & Molly Watt. Dr Wittich is the Assistant Professor at the School of Optometry at the University Montreal, Quebec and presented on his research with a specific focus on the rehabilitation of older adults with combined vision and hearing loss.


Molly Watt has Ushers Syndrome, therefore as a keynote speaker Molly is fully able to talk about life and living with Ushers Syndrome, walk the walk, talk the talk. Molly is a highly capable usability and accessibility consultant, specialising in assistive technology and design for those with sensory impairment. Molly is also an Ambassador and advocate of Molly Watt Trust and Sense, UK. In addition, some 30 people who are deafblind attended the conference, some of whom also presented at the conference. Senses also had a wonderful team of over 30 volunteers and 26 interpreters who assisted with communication and sighted guide.


I was very pleased to learn that the huge effort made in order for inclusion for all to be achieved had been recognised, in particular the accessibility features found within the conference.  Personally having been highly involved in setting up the conference I found the following quote much appreciated; “Senses had made every effort to make this conference fully accessible for all in the deafblind community – I was extremely impressed. There was good lighting, there were On Stage interpreters, hand on hand interpreters, finger spelling (HoH) interpreters, STTR (Speech To Text Relay) screens reasonable sized screens, black background and white large text positioned on either side of conference room, and finally a generous amount of staff and volunteers who were there to ensure full inclusion. “Wow” I remember thinking. Australia sure knew how to pull off inclusivity.”


As an O&M instructor I was able to provide some basic tactile maps, these were also well received. I was also able to apply some Hi-Vis tape to key areas such as the stairs and certain parts of the hotel which posed as a trip hazard. I provided a guided tour and general area layout for those who requested it. Finally two specific Orientation and Mobility presentations were also well received, these covered best practice when teaching O&M for people who are deafblind (thanks Bronwen) and I presented on the Miniguide (thanks Jeremy).


In conclusion it was certainly a week to remember in my career. Starting with the Conference and ending with the Deafblind Camp, I was really pleased I was involved and able to make a small difference for these people who live with such profound difficulties. Cheers, Paul Garwood.