I hope you don't mind but after researching usher's syndrome and RP I came across your blog and I wanted to introduce myself. My name is Bethanie (or Beth), I'm 23, I'm from Staffordshire but currently living in Newcastle upon Tyne and like you, I have Usher's Syndrome.
I was born profoundly deaf, I had the cochlear implant at around age 3/4 and at aged 11 I started to lose my sight. The realisation of my Retinitis Pigmentosa was pretty traumatic, I had woken up in the night, blind, frantically searching for the light switch. After this had happened a couple of times my parents decided to take me to get my eyes tested. It was then that they had diagnosed me with night blindness and shortly after, Retinitis Pigmentosa. My sight continued to deteriorate throughout my early teens, until I was around 15/16 when the deterioration stabilised, leaving me with tunnel vision and they discharged me. They also finally diagnosed me with Usher's Syndrome. Going through the troublesome teenage years I guess I chose to ignore it, push it to one side as I desperately wanted to lead a normal life.
I finished my GCSEs, I did my A levels, I successfully completed a foundation diploma in art and design as like you, I am a very visual and creative person. I then left my small village and moved four hours up north to the bustling city of Newcastle upon Tyne to study at Northumbria University.
I was on the right track of leading a "normal" life and being a "normal" person. It was moving to university that made me realise that actually, life is different for me, life is harder. I realised my capabilities and my limitations, I struggled with it to say the least. Once again, I tried to ignore it but slowly I realised that I couldn't any longer and that I needed to be aware of my condition as well as others and that it was okay that I needed help. Slowly I started to tell my friends at university about my "challenges", and slowly I started to build my self confidence up. Since then, I have been researching Usher's Syndrome and RP, I even based one of my final projects at university on my condition where I created a publication called, "Tunnel", which consisted of imagery and short stories about my experience of having RP. I graduated from university last summer, obtaining a BA(Hons) in Fashion Communication which is one of my proudest achievements to date.
Every now and again I still struggle with the uncertainty of my future and after reading blogs like yours I realised that I need to stop suffering in silence and contact others with Usher's. I am currently going through the process of rebuilding my project that I created at university (Tunnel) by starting my own blog about my journey, focusing on improving my RP symptoms through changing my diet and lifestyle. I am also researching ways that I can get involved to help raise awareness.
Ultimately, I just wanted to say hi, to let you know that you have inspired me and to thank you.
Recently I was invited to appear at the Sense Awards at Kings Cross London.
I had been nominated by friends and colleagues from the Usher Syndrome and RP Community, I have Usher Syndrome type 3.
I was absolutely overwhelmed that people thought enough of me to nominate me .
As time went by I received an email from Sense advising I had been shortlisted in the category for Deafblind Person of the Year, I was in absolute shock.
I then spoke to my partner and friend, both like myself have guide dogs.
In typical style we would attend the awards and tackle this head on.
Being Scottish and living in Scotland, we would travel down and tackle London and all it could throw at us, head on.
It was decided Johnny and I would fly down together, with our guide dogs Jason and Bronte and my partner decided she would love to attend the Guide Dog Awards two days later so she would follow us down by train with her guide dog Eva.
We set about getting tickets to enable us to attend the event, priced accommodation and found a bargain deal, however, it was about 6 miles from where we really needed to be but between us we have great communication skills, we are all oral.
We initially tried to book trains but it was far too expensive as we would be travelling from Glasgow to London surprisingly it was cheaper flying with Ryanair, the journey by plane was just an hour .
We did our homework checked all was okay travelling with our guide dogs first and booked assistance on the flight.
Our journey began on the windiest Sunday night in Scotland for many a year with Jason my guide dog and I making our way by train to Glasgow to meet Johnny who has no sight perception at all and his guide dog Bronte.
Lyn and her guide dog Eva would travel down to London by train to join us on the Tuesday.
Johnny and I and our guide dogs set off, had a bite to eat on the way and got the airport bus to the airport we were booked in at the holiday inn express .
We checked in dropped our luggage and went to the airport to check we had booked in correctly and we had.
At the hotel we were up at 6 and had breakfast, it was self service not ideal, but the staff insisted we sat down while they waited on us, they were very impressive.
They then escorted us across to the airport. This was brilliant as you all know sometimes it's difficult to get assistance or even accept assistance.
We then checked in with Ryanair they who were very professional and after check in escorted us through customs and made sure we were fine, checked our boarding passes and then boarded us first, we felt like royalty.
Neither of the guide dogs had flown before and both behaved impeccably.
We were collected at the the other end by assistance, fair to say we were very well looked after.
We actually bought bus tickets on the flight and were surprised that the airport staff escorted us to First National Coaches. Once again we were greeted with a smile at the bus depot she helped us so much she got us our Oyster Cards and showed us how to use them but also escorted us two streets away to get another bus.
Once on the bus the driver was notified of our predicament and he told us he would tell us where to get off even though it was a ‘Talking Bus.’
This is a huge thing at the moment, I have been involved with the guide dogs campaign to make this happen, this really is a must it takes the stress of travelling away even for sighted individuals.
I had also researched an app called Tube Tamer and downloaded it onto my iphone, it took us exactly where we wanted to go in London, advised of details of every train, tube, bus and how on foot we could navigate the City.
As we got off the bus I checked the app, pressed the map and it directed us to the Ibis Hotel, Styles Custom House . Sure enough we walked round the corner and there it was, fantastic app.
We proceeded to check in, the staff, as usual were in awe of the dogs.
We got up to the room and laughed how on earth did we manage to get here?
All I know is we did it and it was amazing.
Next day Johnny, me and our guide dogs had to find our way to Kings Cross and to the Sense Awards.
After a great breakfast, made easy by the amazing hotel staff I checked my app Tube Tamer, fortunately I have enough sight at the moment to access this app, Johnny would have struggled as he has no sight.
At the tube station the Transport for London staff could not do enough to help us get to where we needed to be with our guide dogs and this was the same every time we used the transport system.
Without a doubt I would recommend Transport for London for their outstanding assistance.
After a couple of changes and a short walk we reached our destination.
We had made it, one completely blind man, one deafblind man and our guide dogs had not only got from Scotland to London but also from one side of London to the other, quite an achievement in itself.
We were shown to our seats. There was a buffet lunch, not ideal for us in this environment but thankfully there was assistance so we were able to stay in our seats.
After lunch were the awards, people like myself nominated and shortlisted for various achievements.
The last of the awards was the one I had been nominated for ‘Sense’s Deafblind Person of the Year’ each nominee had achieved great things this past year.
I felt pride at being nominated, at getting from Scotland to London, from hotel to venue.
I was a runner up for the Sense Award that day, however, I felt like a winner just by being there, me, myself, my guide dog and my best friend who just happens to be blind too!
As Colin said we made it and it was none stop laughing.
The rest of the day we familiarised ourselves with the hotel and took a walk around the local area finding shops along the way to get our provisions for the night.
It was like an adventure, a new environment with new surroundings for us and the dogs all part of the adventure was successfully finding a Tesco extra!
That evening, after we had a shower and relaxed for a little, we went downstairs for a lovely meal which concluded our day.
We went to bed early so we could be up bright and early for the interesting day ahead of us.
After an enjoyable sleep and a substantial breakfast we were ready to face the day ahead.
This day kicked off with a trip to a local park which we found on our travels allowing the dogs to have a little run and play. This was great as it gave the dogs a little down time for all their hard in this big bright bold new City, and with that done off we went on our next adventure.
On and off trains and tubes always with assistance which we extremely appreciated and are truly grateful for making our journey that little easier.
A massive shout out to Transport for London Staff who were a great help.
We finally reached our destination 'Kings Cross' to meet our dear friend Lyn.
As we were a tad early we thought a little wonder would be a good idea, so we, myself, Colin, Bronte and Jason toured the streets of London. We found ourselves at 10 Downing Street, which was truly astonishing, standing outside somewhere so well known and a place you'd see on your television.
Our journey also took us to Big Ben that was breathtaking and Trafalgar Square which is lovely at this time of year all decorated up for The festivities. Then our travels came to a stop.... just for now as we went to meet Lyn.
Both of our dogs started to get excited while we were waiting for Lyn and that's how we knew our friend had arrived.
It is something I'll never forget. Being in a new big City with your two best friends it's honestly the best feeling ever.
The three musketeers headed back to the hotel using the great transport system once again.
We had a pretty chilled out night dinner and a few drinks as we were all quite tired after the busy day and Lyn with her travelling.
Waking up the next day with a migraine and dry mouth I regret those extra drinks I had the night before but nothing could solve it like a nice warm shower and a big plate of food to set me up for the day ahead.
This was an easy relaxed morning as we were all still delicate from the night before. We got all suited and booted for the big occasion 'The Annual Guide Dog Awards' which was held in Hilton Park Lane which was a very high end hotel.
We arrived at the venue in plenty of time and on arrival we were greeted with champagne and were assigned our seats. As we proceeded to our seats we walked along a red carpet passing through an area the press were using, we felt like royalty which is quite funny as we were in the same city that the Royal family live in.
We had a 3 course meal which was lovely, but don't ask me to remember what we ate, let alone spell it!
The evening was a blast we had great fun watching the awards take place and watching the auctions. An immense amount of money was raised. If we had to take a trip to the little boys room there was always someone on hand to accompany us there. The night came to an end and we had fab help getting from the event to the train station.
We had met some great people, experienced great things and had great fun.
Another day under the belt.
One more day ahead in our story which Lyn will take up telling.
As Colin and Johnny said we have had a great experience so far but the day I had been looking forward to had arrived. Thursday was TOURISTEE DAY.
I was so excited. We got up and had breakfast early so we could make the most of the day. Heading to the subway about nine thirty.
The service we had become so used to in the tube and trains continued, amazing system and amazing staff, Transport for London.
We got off at Westminster Station.
I needed to go to the ladies, Johnny was standing outside waiting for me and there that moment he heard Big Ben chime 10 o’clock. WOW, he couldn't see it but he knew it was right next to him!
We then headed to No.10 Downing Street which was completely different looking to me from the tv.
I didn't realise there were gates at the side side. We took some photos and then walked on.
We headed to Nelsons Column and Trafalgar Square. This was where I so wanted to go to get a photo at the Christmas tree. I must admit the tree was probably a bit disappointing to me but loved the fountain just wished I had a Scotland scarf and that I could go in for a swim - haha.
We then walked up The Mall where the Royals all come down in their finery. It was such a thrill just to think we were in the same place.
We arrived at Buckingham Palace as a big posh car left with police escort.
For a second I thought they had heard the ‘Three Blind Mice’ were in town!
We walked through the park giving the dogs a chance to relax a bit. We did have a wee bit of disorientation in here and had to stop a few people for direction.
I will never listen to another person who says Londoners have no time to stop for you. Everyone stopped helped and chatted. We met so many amazing people who went out of their way for us. Instead of only giving direction they would just take us. Well over our expectation.
Thank you London folk.
This is when Colin introduced me to Jane Watt who we met for lunch.
We went to Harvey Nics.
Johnny and I took our metal diet cola bottles home and took a photo of my lunch, sad but true.
It was such a lovely time and I learnt so much more about the The Molly Watt Trust Charity and the hard work they are putting in to make a differenced to those with Usher Syndrome.
Thanks for a lovely lunch Jane.
We wandered about for ages trying to find grass for the dogs after that. Not a lot found that area but with Jane’s help we got somewhere and headed to shop at HARRODS.
Jane guided us round safely and we came out with 3 HARRODS carrier bags from one of the managers. Such a lovely experience although the dogs were on tip toes making sure we knocked nothing over.
We left there to go back to the hotel getting the same attention from the staff at London transport.
We visited the local shops for nibbles for the room and had a quiet night with tea and pot noodles as we were all totally shattered.
Friday came and it was time to pack and get ready for home.
I was excited as today would be the first time Eva would be on a plane.
Knowing how well Bronte and Jason got on the first time helped me stay calm.
We took time with our breakfast and said cheerio to all the lovely staff who had run after us all week. We checked out and headed to Stanstead.
We were definitely more confident on the tubes and managed a couple of parts on our own but got the help we needed.
Colin’s app Tube Tamer was an amazing help to us the whole week.
We got on the bus to Stanstead we had well and truly left. On arriving at the airport we asked a workman where Ryanair was and he kept pointing and trying to tell us where to go! Thankfully his workmate came along and started laughing and literally took us where we needed to go. I bet he gave his mate some ribbing!
The staff printed our boarding passes off for us after which we went for something to eat.
When going through
security we all got frisked and they emptied my suitcase I was mortified all my dirty underwear!
However got through and were taken to the plane first. We had a very good flight home and Eva slept most of the way. We were treated well in Glasgow Airport too. The staff were helpful took us from the plane right through to the bus to go to Central Station.
We were back where we began, our adventure was over but we were back with more confidence in our abilities and our amazing Guide Dogs.
Thanks to everyone who helped us.
Josh’ Blog for The Molly Watt Trust
Hi, I’m Josh. I’m 22 years old and I have Usher Syndrome type 3. I was born with normal hearing and vision, unlike most other people with Usher Syndrome who are born with some form of hearing loss.
When I was 5 years old my teacher suggested that I had an eye test as I was struggling with reading. When I went for the standard wall chart eye test the optician said that it was mainly due to a lazy eye and that it should improve with time. However they also noticed an unusual pattern on my retina so referred me to see an eye specialist at the QMC in Nottingham. After being seen by the children’s eye specialist Dr Gregson, he revealed some upsetting news to my parents. He told them that I had an eye condition called Retinitis Pigmentosa and that I will gradually lose my sight over time before becoming completely blind. Obviously this was a bit of a shock as they had never even heard of this disease before. I was given glasses to help with my lazy eye, but refused to wear them as a kid. After a while my visual acuity got better and I no longer needed to wear glasses.
As I grew up, I always knew that I had something wrong with my vision and I went to see Dr Gregson every year for regular check-ups. I was (and still am) very interested in finding out anything about my condition and knew exactly what Retinitis Pigmentosa was, and what my future entailed from a very young age. The first thing I noticed was that I really struggled at night. I always ended up bumping into or tripping over things once the light levels got lower. When it got darker my peripheral vision just seemed to disappear.
Once I got into my early teens, I noticed that it was no longer just at night that I struggled. I often found certain sports very challenging, such as badminton. When the shuttlecock was hit high into the air I used to lose track of it completely and ended up feeling like a right idiot in front of my mates. I also played cricket and sometimes completely failed to see the ball as it rolled by me on the ground. If I ever dropped any money on the floor I’d be looking for it for a good 10-20 seconds before finally seeing it. Sometimes I wouldn’t even bother to save myself from embarrassment. All of my close friends and family knew about my condition and were always able to help me out whenever I needed it. I managed to get through school without any significant barriers and got good GCSE grades. When I was a kid I always wanted to work for NASA as a rocket scientist. I have always been good at science and maths and decided to do my A Levels in Physics, Maths and Further Maths so that I could do a degree in Physics.
During my first year at sixth form I started to notice I couldn’t hear people properly without looking at their face. Everything just sounded muffled as though I needed to pop my ears, a bit like when you fly. I started putting subtitles on the TV so that I could hear what was being said. It got to the point where I really started to struggle hearing what the teacher was saying. After doing a bit of googling on ‘muffled hearing’, I decided that I had to go to the doctors in order to unblock my Eustachian tubes. These are the tubes that connect your middle ear to the nose, which is why you have to hold your nose when popping your ears. I read that they can sometimes get blocked up with mucus which causes muffled hearing as the ear drum isn’t able to vibrate properly due to a build-up of pressure. So I made an appointment at my local GP and was examined by the doctor. They gave me some stuff that I needed to spray up my nose in order to unblock the tubes which would allow me to pop my ears and hear properly again. This didn’t work.
After a few weeks of trying with no success, the doctor decided to refer me to an audiologist to have a hearing test. By this point my confidence was at rock bottom as I was really struggling in class and found it hard to have a conversation with anyone without asking them to repeat themselves a lot. It’s alright to ask someone “Sorry, what was that?” once or even twice, but once you haven’t heard them for the third time it gets pretty awkward. I went to the King’s Mill Hospital in Mansfield for my first hearing test which I found extremely difficult. Since I didn’t know what pitch the beep was going to be, I found it really hard do as sometimes you think you are hearing something when you aren’t (I’m sure those of you who have done a hearing test can relate to this). After my test the audiologist seemed quite surprised. I remember him saying “How have you managed for this long with this level of hearing loss?” As it turned out I had sensorineural hearing loss in both ears, which meant it was to do with my cochlear and not my tubes after all.
I was told that I would need hearing aids in order to make my hearing as ‘normal’ as possible. At first I was extremely shocked and really didn’t want to wear them. I asked him if there was an alternative, which he simply replied “no, not really”. I had my hearing aid moulds taken that day and an appointment was made a week later in order to have them fitted. On the way home I realised that what my auntie had told me a month or two ago about a woman she knew with Usher Syndrome was a big possibility for what I had. At first I was a bit dismissive of the idea that something could possibly cause deafness and blindness. “How on Earth are the eyes and ears related in anyway?” is what I said when she first told me about her friend. I googled it as soon as I got home and it suddenly hit me. I realised that I wasn’t just going blind, but also deaf as well. After a few hours of research, I concluded that I must have the rarest type of Usher Syndrome, type 3. This is because those with type 1 and 2 are born with some degree of hearing loss whereas I wasn’t.
The following week I had my hearing aids fitted and suddenly the world came alive again. I could hear myself breathing again, I could hear the trees rustling in the wind, and more importantly I could hear speech more clearly again. It was bittersweet though. I was extremely pleased I could hear properly again but I was very nervous about what people would think when they saw I had hearing aids. I was surprised how well everyone responded though; those who had known me for years were quite shocked to find out but were very supportive and understanding. Those who didn’t know me before didn’t seem to bat an eyelid and it seemed as though they didn’t even realise I had hearing aids at all. Suddenly I had gotten all of my confidence back and no longer worried about having conversations with people or needed subtitles on the TV. I was now able to hear what the teacher was saying again and manged to pass my A Levels to study for a BSc in Physics with Astrophysics at Nottingham Trent University.
At first I was very nervous about going to uni, moving away from home, living with new people, meeting new people, etc. After all my confidence did take a pretty severe battering during sixth form with the onset of my hearing loss. I was particularly worried about fresher’s week. Not because of my hearing, but because of my eye sight. I had never been clubbing before and wasn’t sure how my eye sight would be in a night club since they are quite dark. Once I got there and moved into the student accommodation on campus and met my flat mates, I felt rather comfortable. Everyone just seemed so friendly and welcoming and all of my anxieties just went away. I had the best time during fresher’s week and went out pretty much every night. I think being intoxicated with alcohol was certainly a help in this scenario, as people just assumed you was drunk (which I was, but still) when you bumped into them. I met some great friends on my course and the first year went really well. I was getting over 80% in all of my coursework and was on track to get a 1st overall in my first year. I was ready for the end of year exams and looking forward to the summer afterwards. Then yet again, something went wrong.
Literally the day before my first exam, I was back at my parents about to get the bus back to uni when I realised a ‘curtain’ coming across my right eye. From the bottom left corner it seemed as though someone was covering up my eye with a piece of paper. I rang my dad straight away and googled ‘curtain across the eye’. I knew almost instantly that my retina in my right eye had started to detach and that I needed to go to the hospital as soon as possible to have it stuck back on before the cells started to die off. We rang the QMC and got an appointment on the same day in the emergency eye clinic. I was seen by a specialist called Dr Orr who confirmed my suspicions. I was scheduled for surgery early the following morning, where I underwent an operation under general anaesthetic to glue my retina back in place. They also lasered both of my eyes around the outside of the retina to make sure it didn’t happen again. They put oil into my eye which is lighter than water in order to help the retina stick back in place. However, this meant that I had to sit in a ‘posture’ position with my head looking down for 50 minutes of every hour, every day, for a week! As you can probably imagine, this was an absolute nightmare. In case you hadn’t already realised, this meant that I had to miss all of my first year exams which I had revised for. After a week I was seen again by Dr Orr who said that the surgery had been a success and that my retina was back in place.
Having spoken to the university about my situation, they agreed to let me sit my exams during the resit period as a first sit. So throughout the summer I made sure I kept on top of my revision as well as enjoying myself. Throughout the summer I realised that the vision in my right eye was not as good as it used to be. Firstly I had lost a significant amount of peripheral vision, but it also started getting rather cloudy as though I was looking through a misty bathroom window. I went back to see Dr Orr who said that I had developed a cataract, which is common after retinal detachment surgery. Later that week I underwent another operation under general anaesthetic to remove my cataract and replace it with a plastic lens. This helped reduce the cloudiness but my peripheral vision was not improved, which implied it was due to my retina being damaged from the retinal detachment. Just another thing I thought I’d add, retinal detachment is not a symptom of Usher Syndrome and could literally happen to anyone. I’m just a bit unlucky I guess!
Anyway, later that summer I sat my first year exams and managed to get 83% overall in my first year, which I was extremely happy about. Before I knew it second year was underway and I had moved into a house with six of my course mates. It was a great year and I had a fantastic time with memories that will last a very long time. There was a slight hiccup however *sigh*. One Saturday I ‘woke up’ in my bedroom not seeming to know what was going on. There was cereal all over the floor and I didn’t seem to know what day of the week it was or what I was meant to be doing. After cleaning the cereal up and finally coming to realise it was a Saturday, I had a chat with my mate about it. He said that his friend has epilepsy and it sounds a bit like that. I booked an appointment at the doctors who sent me to a neurologist at the QMC. His name is Dr Maddison and he reminds me of Dr Who. He suggested I had an EEG, ECG and an MRI scan. There were no significant abnormalities found, apart from a slight loss of volume in my posterior hippocampus, which suggested temporal lobe epilepsy. He prescribed me with some medication which I still take to this day, although I still occasionally have seizures. They often cause me to have an extremely intense sensation of Déjà vu and I feel detached from my surroundings. People who have witnessed my seizures say that I smack my lips and start fiddling with my clothes. Most of the time they fade out, but occasionally I get temporary amnesia where I forget what I am doing, where I am, what day of the week it is and just get really confused in general. Again, not a symptom of Usher Syndrome, just bad luck!
Dr Maddison was aware of my vision and hearing problems and said that I could have a mitochondrial disease, which doesn’t just affect the eyes and ears but also pretty much everywhere else in the body. I was very frightened at this possibility as you could imagine. He said that he thought it was extremely unlikely as I didn’t show any signs of muscle weakness, but the only way they could be sure was to have a muscle biopsy. At the time I was willing to take the risk and refuse, instead opting for genetic testing to test for Usher Syndrome. I was referred to the genetics team who took a sample of my DNA to try and find the faulty gene causing my condition. When the results came back I was finally relieved to know exactly what I had. It was Usher Syndrome type 3 caused by a mutation in the CLRN1 gene. This gene creates a protein called Clarin 1 which is essential for homeostasis (a scientific word for maintenance) in the retina and hair cells in the cochlear. I have inherited two faulty copies of this gene from my mum and dad who are both carriers of the condition, but don’t have it. This is because it is a recessive gene and you need both copies to be faulty in order to have Usher Syndrome type 3. I also have a brother who doesn’t have the condition, although there is a 2/3 chance he is a carrier. Although it is the rarest of all the Usher Types, turns out my parents share a common ancestor (which we all do somewhere along the line) that had the gene mutation that causes my condition.
Since finding out I have Usher Syndrome, I have completed my degree with a 1st Class and I’m now doing a PGCE to become a physics teacher in a secondary school. I have got through a few pairs of hearing aids as my hearing has deteriorated throughout the years. I have been back to the eye clinic for a visual field test and have about 30 degrees of vision in my left eye and only 15 in my right. My visual acuity in my left eye is perfect and I don’t need any glasses. However since my right retina detached my right eye acuity is practically useless and I don’t tend to use it at all, in fact it often makes it harder for my left eye! There is one cool thing about my right eye though; I can now see the UV light from black lights due to my plastic lens. I have now been registered as sight impaired and will get a card, which I can show to the bouncers next time I trip down the stairs so they don’t kick me out, even if I was drunk! Looking into the future, I will take it as it comes and I know that my friends and family will be there to support me every step of the way.
P.S. Does anyone else who is partially sighted think that those wet floor signs cause more harm than good?? I have never once slipped on wet floor but have lost count of the amount of times I’ve tripped over them bloody things!
The sport of running is booming in the UK right now. A recent England survey found the number of people running stands at over 2.1 million, with only swimming more popular.
As a runner for over 20 years, I’ve definitely noticed the recent significant rise in participation in my sport. Community initiatives such as http://www.parkrun.org.uk/parkrun, and practical guides like the Couch to 5K podcasts are playing a vital part in shifting running from a world inhabited mostly by mega-competitive, mud-loving mavericks, to one which is a regular pass-time for people of all abilities, ages, fitness levels and ambitions.
I’ve completed five marathons – personal best 3 hours 29.36, Berlin 2012 – and am training for Nottingham later in the year. I, like thousands of others, am a regular at parkrun, with a personal best over 5k of 20 minutes 09 seconds.
My deafblindness is as a result of the genetic condition Usher Syndrome. I have limited vision – light and dark perception, and am profoundly deaf. With the use of hearing aids this is significantly improved, in the majority of situations my hearing is the lesser of the two impairments. It’s quite common for people not to realise the severity until they think I’m ignoring them or not paying attention (confession, sometimes that’s the truth, ha!). This does have it’s downsides of course. I often find conversation in noisier environments wash over me and concentration to keep up with what is going on around me can be tiring. Then there’s the regular assumption that anyone who can’t see must have amazing hearing.
As I have sufficient hearing to be able to communicate verbally, it is my sight which is the dominant impairment for running. For me to run, assistance from guide runners is essential. Using a sweatband bandanna often popular with tennis players, I’ve tied a knot in the middle which creates too smaller loops. The guide runs alongside me with us holding a loop each. As we’re joined by something small enough to fit round a person’s head, the gap between guide and runner is small; however there is enough space to allow for freedom of arm movement and consequently a more relaxed, natural running style, whilst we’re not too far apart that the guide is unable to take control when necessary.
My hearing impairment does have a limited impact on my running. A good guide/athlete relationship is essential for success, and there are times when my hearing means the guide needs to work harder than they might for other blind runners. Running on windy days often makes it harder to hear.
If it so much as looks like rain I always run in a woolly hat as hearing aids are not water-proof. When I ran the Loch Ness Marathon I made the mistake of believing the weather forecast and left my hat at the hotel – it’s the Scottish Highlands, what was I thinking? A downpour 2 miles into the race meant I ran hearing aid-less for the remaining 24. Whilst my guide had a loud voice, I have absolutely no idea what the race atmosphere was like, a big part of the enjoyment of any event.
Digital hearing aids infuriating insistence on adjusting to noise levels makes my ability to judge my own surroundings by sound trickier. Crowded races can present a challenge, so running with a guide I trust is essential. Parkrun, with it’s “run not a race” mantra has provided excellent opportunities for newer guides to practise in busier environments, before I throw them into an actual race where amongst other things, they have to deal with my reckless style - run hard from the start and hope for the best.
My left is the stronger of my ears and so the guide always runs on that side. With marathon training requiring runs of 3 hours, this does make me more susceptible to injuries. A look through my physio’s records shows she has had to work on virtually every muscle on the left, with far less work needed for the right. Yoga proved to be a great help in dealing with the lop-sided strains of running, however with balance being more difficult for me as a deafblind person, not being able to watch an instructor and hearing being awkward – especially during the bits when my head is upside down - one-to-one coaching is my preferable option. This however has proved more expensive and, at times, harder to organise.
Running’s boom is partly due to how easy it is to start. All a person needs is a reasonable pair of running shoes and somewhere to run. This is also the case for a deafblind person like me, with one obvious addition; I need someone to run with. Thanks to an internet search eight years ago I’m a member of The Stragglers Running Club in Kingston. From day one they were very enthusiastic about integrating me into the club, with many runners offering to take a turn at learning how to guide. I have heard stories about other clubs which aren’t so open. As a result of this support, I don’t consider my achievement to be that I run, something which I’m often told is how other people view me. I prefer people to be impressed by athletic achievement, such as it might be, rather than overcoming any physical barrier.
There are great benefits for the guide too; the loneliness of the long-distance runner is never an issue. Unfortunately age will eventually catch up with all of us, and for runners this can mean those personal bests become a distant memory – I’m pleased to say I’ve not reached that point just yet. I do know that for some guides, the opportunity to take on the challenge of helping someone else to a new personal best is as rewarding as if they were aiming for their own.
As an outdoors-minded person, I can often be frustrated by restrictions on freedom deafblindness places on me. It’s simply not practical for me to get on a train and head for the hills whenever I feel like it. The running lifestyle I’ve created, with the support of others does allow me to satisfy my restlessness and desire to be outside, something a gym membership for example doesn’t do. I could run on a treadmill whenever I like, but for me that’s not the same as feeling the mud on my legs, the sun on my arms, the wind in my face and pulling my woolly hat down over my ears to keep the rain out.
If you would like to read more about how I run, in 2014 I self-published a book focusing on my debut marathon – London in 2011 – and my subsequent exploration of what I ran past along the 26.2 mile course. Find out more at http://www.runningblindbook.com/www.runningblindbook.com