London Marathon Livability reception

It's not often that I write a blog post so quickly after something that has happened but this week I did something that I never thought I would do again.  I spoke in public!!  Before my stroke I have spoken in public on quite a few occasions but having had the stoke I never thought I would have the confidence to do it. Also I never know what sort of day I will have with my aphasia.  Sometimes I am a bumbling idiot but other days I am quite fluent.  I never know which me will turn up on any particular day.  

I had an email from Livability (this is the charity that runs Icanho - my rehabilitation centre) and they asked if I would like to talk at a reception for their London Marathon runners.  It was a tough decision for me.  I really wanted to do it but I had a real fear of making a fool of myself.  For people who suffer with aphasia this is a constant feeling we face every day.  You always try to speak the best you can but sometimes it just doesn't work.  For me in my mind I generally know what I want to say but just cannot work out how to get the thoughts converted into words.  I also want to find the perfect word but sometimes I just can't find it.  You cannot understand how frustrating I find this.  The other thing that affects my aphasia is stress .  When I am under pressure the words just start to fail me and the more it happens the worse it gets.  So standing up and talking to strangers is something I would find stressful.  In some ways it would have been easy to say that I wouldn’t do it.  After all if I didn’t do it I could have a lazy Thursday evening at home.  On the face of it it is an easy choice to make.  

One of the many things that my stroke has taught me is that sometimes you have to push yourself beyond where you thought possible.  So even though it would have been easy to turn this opportunity down it was something where I could tell my stroke once again that it hasn’t beaten me.  The main positive of doing the talk was that I could tell people about the wonderful things that Livability and Icanho do. So I decided that I would do it although I wasn’t sure how I would get there as I didn’t want Stephanie to take a day off work.  I was not really thinking straight as the event was on a Thursday and this was her day off.  I emailed Livability and let them know that I would do it. I immediately thought that I should retract as the implication of what I had agreed to do dawned on me!!

I thought quite a lot about what I would say and came up with a plan of my speech.  I quickly decided that I would write out exactly what I would say and try and remember as much as possible.  With a script at least if I stumbled with my speaking I could read what was written.  I was even prepared to read what I had written word for word.  If my aphasia was bad then I would not have had an option but to read it all.  That would still be tough to do if it was a really bad day.

Writing what I wanted to say was tougher than I thought.  When I started to write it I was having a bad cognitive day and it was a real struggle.  I persevered and eventually came up with a draft.  It took a few more more attempts to get a version that I was comfortable with.  Now came the difficult bit to try and a commit as much to memory as possible. To a non brain injured person this would be a challenge but to a stroke survivor it was like climbing everest.  It was a massive problem for me as I did want to do well but couldn’t really hope to remember the majority of the speech.  I practised and practised.  I am sure Stephanie was fed up with me speaking the speech out loud but this was the only way I stood a chance of remembering it.  

On the morning of the talk I woke up wondering what sort of cognitive day I would have.  It wasn’t perfect but it wasn’t terrible.  I practised in the morning before I went to work and it was probably one of the worst attempts and I had to refer to the script constantly.  It was probably nerves kicking in I was so nervous!!

We left for London at about 3 o’clock; it was probably a little early but there had been problems with the roads earlier in the day.  As it turned out we had no problems at all, we arrived at the Livability offices an hour early!!!  We were welcomed by Fabian who had been emailing me and he was very welcoming and put me at ease.  I was hoping to have another run through of my speech but I didn’t get the opportunity.  We were then introduced to Lisa who was the compere for the evening.  Again we were made to feel very welcome.  We also met the other people who were taking part, both of whom were running the marathon.

It was soon 6:30 the time had flown past and I was feeling nervous as we went into the area where the reception was taking place.  The room had an amazing view right across to the docklands skyscrapers.  It was a great venue and was well laid out. I got the opportunity to talk to quite a few people who worked at Livability and some of the runners.  There were probably over 30 people there so it wasn’t too bad.

The evening started with Lisa telling everyone about the work that Livability do.  It was great to hear about all of the things that they were doing that was helping a wide range of people.  Lisa also told everyone about her experience running the London Marathon a few years previously.  She spoke really well and without notes; how I wished she had a script.  I didn’t want to be the only person to read out what they said.  

There was then a speaker (I think his name was Simon, but I am not really sure) who spoke about training for a marathon and his experience of running the marathon the previous year. Once again he spoke without a script, it would mean that I would be the only one reading from a script.  The pressure was mounting and I started to feel nervous. 

He finished talking and so it was my turn to talk.  I stood up and took a deep breath and began.  There are some times in life where you find some inner strength, I don’t know where it comes from but it just happens.  Fortunately it happened to me there and then.  I spoke and I wasn’t struggling with words much (only a few times).  I had my script but I didn’t rely on it.  I think the practising I had done paid off.  I did refer to it on a few occasions but generally it was only there for a few anchor points when I needed to be sure of the next section.  I went off script quite a lot but it was not uncontrolled; it just flowed out of me.  I was not nervous and I was looking at the audience and they seemed to be hanging on to my every word.  It felt so good, much better than I thought possible.  I had timed my speech and it should have taken 10 minutes, it went so well that I was probably talking for about 18 minutes and it wasn’t because I was struggling at all; I was flying and soaring.  People laughed at the right places and really seemed to enjoy it.  When I finished everyone clapped - I had done it, I had spoken in public.  I even answered a few questions from the audience.  I found that quite easy as I think I was flying high on adrenaline.  

Me with Ralph and Francesca at the Livability London Marathon reception

After I had finished I felt a great wave of relief.  There was then time for me to chat with a few of the amazing runners and encourage them.  I was surprised at how much people said they enjoyed it and they found it inspirational. I have always said that I am not inspirational and haven't set out to be.  All I am is a person who has a bad thing happen and all I do is I deal with it in the best way I can.  If it serves as inspiration to others then that is a happy consequence.

Having spent the evening with some wonderful runners I found it inspiring.  These people from all walks of life will train for months, they will make massive sacrifices to do their training and they will then punish their bodies by running over 26 miles for charity.  As I said all I have done is deal with my stroke but these people are the inspirational ones they will do this race and between them they will raise over £250,000 for Livabilty.  This is truly inspirational.  To all of you I want to say thank you on behalf of all of the people who this money will benefit you are absolutely amazing.

If any of you running the London Marathon want to get in contact. I will promise to encourage you as best as I can.  My twitter name is @rowellswales so tweet me.  You can also email me on rowellswales@yahoo.co.uk

I will finish this blog post with the final quote from my speech.  “Run when you can, walk if you must, crawl if you have to, just never give up”.  To all the runners in the London Marathon I wish you every success in your training and for the race itself.  For fellow stroke survivors I hope that this blog post will help you achieve your marathon whatever that might be.