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Wednesday 7 September 2011

You will probably never swim again - Verity Joyce

After Pauline’s invitation to write something for this blog, and after reading others stories, I have been reflecting about how we all have our own journeys and this is one point where we cross paths and describe our own journey and encourage others. Here is mine....
‘You will probably never swim again’




I remember the words of the consultant: ‘you will have to learn to walk again and will probably never be able to swim again’. This was a numbing time, despite being ranked 3rd in the World for Deaf Women (200m backstroke) 3 months earlier when swimming for Great Britain, I was not really faced with much of a choice. I was 17 years old, but so ill through menieres disease which I had been diagnosed with, bilaterally, since age 11. My last few months had been spent on the living room floor with a mattress too as I was too weak to go up and down the stairs safely. I knew I had to go ahead with the treatment which involved a drug for TB being injected to get to the toxic level and give me the side effect of destroying the rest of my semi-circular canals (balance system in the ears) that was not already hit by the disease and potentially the rest of my hearing (I was already profoundly deaf from the age of 1 ½ years old).
Menieres Disease
One year earlier the same ENT consultant had drilled holes into my skull to try and help the inner ear fluid ‘leak out’ and reduce the attacks of menieres which consisted of extreme dizziness, tinnitus, sickness etc. I was great at predicting the weather with my menieres – obviously the pressure in the inner ear was sensitive to the air pressure and my Mum relied on me being ill (or not) to tell whether the bright sunny day would have rain or a thunderstorm with the washing on the line! I was more reliable than the weather on the BBC! That year I was in my final year of my GCSE’s and had to train for the Deaflympics (Denmark), though I was still regularly off school and swimming. I still don’t know if the operation got me through that year or sheer determination not to repeat my GCSE’s and give up swimming like many expected me to.

Muscle Scarring
Following my swims in Denmark my menieres attacks became more frequent and severe, hence ending up sleeping day and night downstairs, preferring my eyes closed rather than see the world spinning around me. I went into hospital where they expected me to have a major attack of dizziness as a result of the medication and be out in a week. The injections started – into my bum since there was more fat there than my legs at that time! This drug, streptomycin, is a viscous liquid that had to be mixed with sterile water or whatever it was that basically doubled the amount of ‘stuff’ being injected into me. After one week I had no reaction, so the dosage (& water) increased by 50%. After two weeks and still no reaction, the dosage increased again, this effectively doubled the original dose. The reason for all this detail is the effect of numerous injections in the same place leading to scar tissue, the liquid scarring surrounding tissue and one nurse who hit the sciatic nerve on my right side, leaving me with almost constant pain particularly at night and daily pseudo-sciatica created by the nerve going through these muscles which requires rehab that often conflicts my balance rehabilitation.
After 3 weeks I was discharged. Out of hospital I was told I might need a walking stick, and it would take me about 6 months to re-learn to balance again with walking –  it took me 3 days to walk on my own outside (but longer for dealing with crossing roads etc due to turning my head). However, I could not face life without my swimming. I had swam internationally at senior level since the age of 12 years old, and the reality of life without the pool and the people I knew was not possible for me to accept at that time.


Trying to Swim Again
I went back to the pool, at the time with an (now ex) boyfriend (an ex- international swimmer himself). He swam in front as I swam behind. I did the first length, I was not sure if I was swimming or the world was swimming by me. I persevered. I thought ‘the more I push my brain to learn, it will learn’. I did the first turn. I did not know which way was up, my eyes felt as though they turned in my head. I put my head down and carried on swimming as much as I knew how to after years of training helping the proprioception in my limbs. I got to the end of the 2nd length, I still had not recovered from the first turn but again I just thought ‘force my brain to learn again’. I did another turn, the disorientation doubled on what I already had. I did not know where was straight, where was up or down. I carried on – I just wanted to do 100m. I did the third turn and I literally felt my world turn upside down physically and mentally. I swam halfway down the 4th length and could not orientate myself at all. I tried to get my head above water but started to go under because I had no sense of where I was. My boyfriend saw me and swam back, holding my head above water. My head whipped forwards and back out of control, even headbutting him as I could not see where he was or control my head. My brain did not know I had stopped swimming and did not know what to do with all of this information bombarding in without the semi-circular canals correcting it. I was shocked that this part of the body did so much and yet I had never been grateful for it before.
I just cried. I realised that the consultant was right, that I might not be able to swim, at least competitively again. I continued to try and train my way back up. For that year I persevered mostly on my own making myself ill in the pool and on land to try and get my brain to move beyond all the above. 8 months later I was swimming in the European Deaf Championships in Lithuania, but my rankings were not the same. The faster I swam, the worse my disorientation got because of all the mixed messages. I would finish the race and my head would continue ‘swimming’ making my head move out of control, including head butting the wall and then causing me to go underwater, which led to being pulled out of the water by my arms.



Disabled by Other People’s Attitudes
Whilst looking back I think ‘how did I managed to do that back then?’, the hardest thing was the attitude of people, coaches and managers etc. They looked at my rankings with disdain, as though ‘I could do better’. It is such an unusual disability, and one that you cannot see, so to imagine that I looked the same but had gone from a high ranking to being unable to orientate myself in the water was not touching the empathy or understanding of the people I needed it from. I tried to explain it is like swimming when drunk, but I do not think many people ‘got it’ as swimming constantly when drunk is not something most people can even do!
Training Physically – Climbing a Mountain Mentally





In the next few years I moved around a bit, trying to get my life together as that time above brought about reactive depression. I joined a club in Birmingham with an ex-Olympic coach, Gerry Thain. He was very patient with me though I am sure he also did not understand what was happening. Many times he held my head at the end of the pool when it was moving out of control. That meant my eyes would move (nystagmus) but it would settle down. Each training session was a hill to climb psychologically and emotionally. I remember times sitting in the changing rooms crying out of fear for the session. Looking back I wonder why I did it, but swimming was such a large part of my life that I could not let it go. After moving away from this area and club, I ended up training on my own a lot because swimming around others (and the waves created) caused me to be more disorientated. I swam one more Deaflympics (Rome) almost 4 years to the day of having my inner-ear balance destroyed. Rumours had gone round that I had been in a car accident and international swimmers who knew me in previous competitions seemed to show respect that I was back. Sign language is different in every country however, so trying to tell Russians about the treatment was no easy feat!



My rankings were not the same (and I cannot say that support from coaches/management had improved –  I wondered if it was a visible disability if they would be more understanding?). I was 7th in the world now, therefore lower when I was 12 when I was 6th (and aged 16 – 3rd). Additionally I was usually in the top 8 for up to 6 other events but now I could not swim as many due to my balance. Supposedly coming towards my best ‘peak’ times of swimming, I was left with feeling like my head was separate from my body as soon as I swam 15 metres. I had to have a chaperon out of the water to hold my head and then help me walk. I had to ask myself if, psychologically and emotionally, if the rankings were worth this psychological stress?
Retiring from Swimming
That started I would say 5 years of grieving of what I had lost. I understand so much more now I have been through counselling training, but I think starting at a high level at such a young age meant this was a very dominant part of my life. Additionally I was the only deaf person in a mainstream school and being around other deaf people through my swimming just raised my confidence and I was finally on a level with everyone in terms of communication.
On a bit of a side note, in 2006 I got back in contact with a fabulous friend of mine, an ex-swimmer from Ireland who knew me through all of this since 1993 when I was 12 years old. 16 months later we were married, I never would have thought I met my future husband when I was 12 (just don’t ask how old he was then!)



Outdoor Swimming
Fast forwarding to 2010, 9 years after being ‘forced to retire’ as I saw it, I had started to think about open water swimming after seeing it (and fellow ex-internationals) on TV. I searched on the website for any local swimmers to link up with and found Mark Robson, who duly responded to my emails and texts (including informing me about the cancellation of the GNS in 2010 which I thought was a wind up since I had never known a swimming event to be cancelled!). I realised that swimming in lakes was easier, because the repetitive patterns seen in pools, such as the tiles, disorientated me. Part of my daily rehabilitation is that I must make myself disorientated, so that this keeps challenging the brain. If I don’t do this, my ability to do the simplest of things such as walk around my own house, just goes. Pushing myself to be disorientated in the pool however, just made me miserable, because it was just reminding me of what I could no longer do.
The only difficult thing is the travel to Ellerton, particularly when I have to make sure that I am not disorientated at the end of swims.  I was determined to go through with the GNS though, because I knew for years the fears and sadness that I had needed to be faced. In 2011 I had a friend drive me to Ellerton Lake and bumped into Pauline and the gang coming out of the water. Pauline and her excellent lip-readable quality (not sure if that is a phrase!) meant that I joined in with the group.
It has been nice to be back involved on a more regular basis and I have definitely noticed less disorientation in the water because all I can see is my hand/arm and then the trees are distant enough so that they don’t disorientate. I was grateful to come across some people who know the odd sign (or level 1 British Sign Language). Even though this often limits the conversations to ‘my husband has brown hair’, ‘I live in a house’, ‘my favourite colour is blue’ and so on (!), the point is that the awareness and willingness to communicate is there. I often feel very quiet once I am all geared up and sometimes get in the water on my own just to give myself something to do. I would welcome contact with anymore swimmers who are severe-profoundly deaf and do open water swimming, as it can be a lonely internal conversation sometimes when people are stood around chatting and laughing. I am conscious that writing this could impact on those from the group reading this as I don’t want them to feel bad, however at the same time I am sure there are others out there who experience the same (even if it is not due to deafness but other things such as depression) so it is good to get it out there.
The Return of Old Battles
Despite getting a stress fracture in my foot (as a result of my rehab/frequent falls) I swam the GNS in 2011. I was really pleased with the organisers suggesting I wear a different coloured hat to everyone else, so if something happened, the kayakers would know that I am deaf, or at least that ‘something’ is different about me. Though I did wonder in the sea of orange with my purple hat if people were thinking ‘can’t that woman blatantly see she is in the wrong group?!’ Or maybe the kayakers just thought I was INCREDIBLY slow. Nevertheless my husband pointed out the advantage of seeing me throughout for future photos so I think I will ask for the same tactic again!
As soon as I got in the water, the mental battle kicked off. I hated it. I was cursing myself for being ‘so stupid’ for doing it, and really felt that ‘everyone’ was in front (as you can see all my counselling training was left at the start). I did feel more disorientated due to the waves and other peoples arm movements/helicopter. At times in the swim I tried to talk myself to calm down, that I had achieved a lot and it doesn’t matter how I do. I would make myself swim slower to try and force myself to believe these positive thoughts. On the second half though, my years of swimming and obviously some muscle memory/stamina came through and I found it easier to catch up some people. I really still believed that I was near the back of the group but I told myself ‘I have done my best’. Once I went to get out, I had the usual fall over that people seem to have when coming on land. I walked out and looked for my husband. He was surprised to see me and so I had to ask why. He said that he expected to see me halfway through the group so he was not expecting me out near the front. I was a bit puzzled and checked with him the colours of the others hats (even though it was the elite swimmers before us so the swimmers before me obviously must have been my wave!). I suddenly started to realise that the negative thoughts and reality were probably two different things.
Without being aware,I had what is called in Cognitive Behavioural Therapy as ‘Automatic Negative Thoughts’ (ANTs). These ‘ANTs’ obviously just woke up and crawled all over my mind as I was back in a similar situation to my past. Pauline texted me to ask how I did and I told her about my struggles, but that I seemed to have done ok. She texted me a while later to tell me I had swam in 29min33 secs. I really could not believe it – half of me felt proud of what I had achieved, I never expected to be under 30 minutes and half of me felt stupid for allowing the negative thoughts to take over.


New Signpost for the Journey
I realised ‘if I really trained, rather than just once a week swims, what time could I do?’ suddenly my world opened up and I started planning my next year of fundraising for hearing dogs for deaf people. In the meantime I realised that although I had faced my fears, mentally I had to face a few more of my inner battles. One event does not suddenly remove all my fears. I quickly entered the Great London Swim (which I subsequently cancelled due to another fall/knee cartilage injury and blackout). I have subsequently replaced this with the Monster Swim – in the Loch Ness next week.
So this is really a (long) summary of my journey – though I could not think how to make is shorter and for it to still make sense! One quote I have to agree with is that ‘our greatest battles are with our own mind’ (Jameson Frank). What is stopping you going for it? Open water swimming is not about speed most of the time – I have read countless articles and blogs talking about the mental effort, so no-one is alone.


My Dreams

Two poems that helped me through the hard times:
Follow Your Dreams

If while pursuing distant dreams
your bright hopes turn to grey
don’t wait for reassuring words
or hands to lead the way.

For seldom will you find a soul
with dreams the same as yours.
Nor often will another help you
pass through untried doors.

If inner forces urge you
to take a path unknown,
be ready to go all the way,
Yes, all the way alone.

That’s not to say you shouldn’t
draw lessons from the best;
just dont depend on lauding words
to spur you on your quest.

Find confidence within your heart
and let it be your guide.
Strive ever harder toward your
dreams and they won’t be denied.
By Bruce B Wilmer
DON’T QUIT
Don’t quit when the tide is lowest,
For it’s just about to turn;
Don’t quit over doubts and questions,
For there’s something you may learn.
Don’t quit when the night is darkest,
For it’s just a while ‘til dawn;
Don’t quit when you’ve run the farthest,
for the race is almost won.
Don’t quit when the hill is steepest,
For your goal is almost nigh;
Don’t quit, for you’re not a failure
Until you fail to try.
Jill Wolf

Yet again the final word is mine, as you can see Verity's blog is both heart warming and at the same time heart breaking. If she had not been struck down by illness i have no doubt that we would still be watching her compete on the tv and read about her in the papers, however, i can say that because of the tragedy that almost but thankfully failed to end her time in the water, we now have the privalige of swimming with her. She is receptive to any and all ideas that will aid in her to contunue her swimming and will entertain no nonsense about not swimming. Her style and technique are an example to all and her determination to continue to swim puts even the hardiest of us to shame, this is a woman who's love of water will defie all that doctors and consultants will tell her.She has the support of her husband which is half the battle won, her focus is the other half, she is primed and ready to find any way she can to enjoy the love of water to the full.  She is a mermaid amongst mermaids and it is an honour to have an olympian swimming with us, her smile and gentleness belie a quiet deterimation to succeed, it is us that must adapt to her deafnesswhen swimming with her,  not her to us and i only hope that we do not let her down. Any barriers that might stop her swimming we will happily break them down for herIn the mean time we will continue to swim together and i hope its a partnership and a friendship that will last for many years to come.

7 comments:

  1. Kate Upshall Davis Great blog Verity!! Very inspiring x

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  2. Liz Reed Life without swimming would be unthinkable for me right now. Your determination is incredible. Hope to swim with you again soon x

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  3. Marie Lovell
    Oh Verity Joyce - truly inspriationsal but also fun! what a gal!

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  4. Jane Hardy What a moving article and what an amazing woman!

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  5. Fantastic! I'm full of admiration. Keep going Gal! You're just THE BEST!

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  6. What a determined lady, always smiling, can't wait to swim with you again. x

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  7. I don't think any of us realised how hard you've had to work - makes me feel so humble and pleased to swim with you. Thanks for the help and support you've given me!

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