Steve Middleton whose story was featured in the BBC television documentary - 'Lost for Words'

Steve MiddletonMy Starfish Story

There have been quite a few occasions recently when people who I know, have asked me, 'Steve how have you gained this control over your stammer'?
When talking to these people, using 'Technique' I know all they are thinking about is why I am not moving like I used to. I think most people are too embarrassed to ask me so I usually make a point of saying it for them! (Explaining all about Starfish).

"it really hit home, actually facing up to the fact that I have got this severe stammer"

After living with a severe stammer for 20 years and actually finding a way in which I can control it, is a dream come true, Especially the body movements I had.
Just this year it really hit home, actually facing up to the fact that I have got this severe stammer. After hiding away from it most of my life and not really worrying about it, was not what I wanted to go on doing. At this point in my life more then ever, because 5 years after leaving college, I knew to get where I want to go takes a lot of talking to people.
I am a D.J and music producer, these are not the easiest of jobs to get into, so this is when I really didn’t need this stammer, especially the movements I had whenever I talked.

I was going through a low patch, and I was willing to try anything to help. After several trips to see my G.P he arranged for me to see a neurologist in a special hospital in London. This would detect what was going on in my brain when I talked and what triggers my body to move in abrupt ways. After several intense days of tests, scans, experiments etc they still did not know why I had these movements when I talked ( yeah right )!

"what was actually going on inside me when I talked, if neurologists didn’t know then who does?"

The doctor said he has never seen a case like mine, never seen someone who moves when they talk and not move when they don’t talk. This heightened my worry of what was actually going on inside me when I talked, if neurologists didn’t know then who does?
This doctor said he could prescribe me a course of drugs that he thought ‘MIGHT’ help me. These he told me were strong drugs, which could have long-term side effects, drowsiness and which could end up being addictive. He said they might not work but its entirely up to me if I want to start on this course of drugs. (Tempting)!
I thought about this and decided to start on the drugs, I was at a stage now where I was willing to try anything.
I went and saw my G.P; he was sent the list of drugs that I was going to start with. This doctor wanted me to start on this one particular drug for a couple of weeks, which was called ‘Rivotril’ (Clonazepam). The idea was to start off with a low dosage to take when I went to bed because it was very sedative, and could make me drowsy, and to build up the dosage gradually and to start on the other prescribed drugs. After starting on these drugs, they made me quite poorly, having bad stomach pains.

"has more understanding and passion about stammering then anyone I have ever talked to"

This is when I was on the net, and came across the ‘Starfish Project’. I phoned Anne and asked to be booked on the nearest course /or any cancellation. I spoke to Anne on several occasions leading up to my course and we had some good in depth chats about the course and how it would effect me, I told Anne about the other problem I had which was my body movements and I felt I am actually talking to someone who, yes has never stammered but has more understanding and passion about stammering then anyone I have ever talked to concerning stammering.

Anne made me feel very at ease, and for someone who I had never met, I felt I could say anything.

Previous to this I got a letter from the BBC stating they were going to make a documentary about stammering and were after volunteers to be involved with the programme. I was very, very sceptical about this, to stammer on national T.V sent my stomach churning!
Anne phoned me and told me the BBC had contacted her and would it be all right for Anne to pass on my number, to have a chat with the producer, I said yes.
After chatting with the guys from the BBC, we decided that they would come down to my house and have a chat about the programme and what it was all about. (How nervous am I)!
After meeting the producers (Nic and Gabby) who were very nice and understanding people. They gave me some time to think about it, and to take it all in. I was still so nervous about the whole thing I phoned up Gabby and they said they would come down from London and have another talk to me face to face. They wanted to film me before the course, on the course, and after the course. After a lot of discussion I decided to go ahead with the filming. It was either don’t do it and think somewhere down the line should I have done that? Or just go for it.

They started to film me first of all in interviews then out and about in my normal every day life, I entered a d.j competition some weeks before they contacted me and I got through the 1st heats and was in to the Bar-Med final, they filmed me D.J’ing on this competition, and I managed to get through these heats and get to the regional final.

As the winner I had to make a speech live in front of the audience and all the film crew!

It was the day before the course on a Tuesday they came again, we were going to do a day of filming then drive up to the course together that night, stay at the hotel then the course starts early Wednesday morning.
I was feeling really nervous at this time not just about the filming, but about the course, and what it would be like to meet all the other people, and to meet Anne for the first time. Especially after talking to Anne on the phone several times previous to the course I felt I had known her for years!

When the course started I didn’t know what to expect. I had no idea it was about a breathing technique, being on NHS courses in the past I thought it was going to be similar to this i.e. pro-longed speech etc. This in the past has yes helped me to a degree but has had no long-term change on me.

As the course went on I was getting more and more focused, bit ropey at first, because I was letting myself get angry when I got blocked on certain words, but soon really got into technique and was really working at it.

I felt a bit pressured on the course having a film crew there and having a microphone strapped to me, but this wasn’t all bad because if I could handle this pressure in there then I was sure it would help me when I left to use it out in my every day life.

"I was getting control over my speech and subsequently was not moving"

It wasn’t until Anne arranged for me to watch my first day video, I realised how far I had come. I was getting very emotional at this point; I was getting control over my speech and subsequently was not moving.

There were times on the course when I really did just want to burst out in tears, but instead kept on holding back and getting the lumps in my throat where I just wanted to ball my eyes out.

After the second day I didn’t want to say anything was so nervous of losing what I had gained. I was speaking with control and was not moving! I just didn’t want it to go away. By the last day of the course I was overwhelmed with myself, having all this control, I never thought this would happen.

Steve and the film crew
Steve and the film crew 2

Going into Eastbourne on the last day was brilliant I was talking to people and asking for items such as leaflets, magazines etc and no one even knew I had a stammer!

It was also quite a weird feeling having the film crew rushing around me with a big camera, mic’ boom, stand, and producers.

It was the end of the course and the producers wanted to do an interview with Anne, and then myself. This went very well I was using good technique and talking without stammering and body movements, how good did I feel!

Leaving the hotel and saying goodbye to the people who have helped me make this happen I thought I could hold myself back from getting too emotional, but this kind of went out the window!

Couldn’t stop crying from leaving the hotel to getting home! (Felt a lot better)!

Arriving home, and seeing family and friends also proved to be quite emotional, trying to explain the course is quite difficult, People have actually got to experience it to know and understand what its all about. Friends and family couldn’t believe the difference in my speech and especially my body movements. Started to find it hard using this technique in front of people, this is when I pulled everyone together, stood up and made a speech about the course and what I have to do and what they can do to help me. This felt great too, felt like more blocks have been taken off my shoulders and I can really start putting this into practice.

The film crew were involved in my recovery too. Anne showed them all what they could do to help me, I found this very helpful especially in doing interviews after the course, plus they were all on the course so they knew exactly what it was about and what I have to do. It was so much better doing interviews after the course. I had something I didn’t have previous to the course ‘CONTROL’. In interviews previous to Starfish I had a glass of water and a towel, beside me, because I would be sweating so much. Now I was having interviews with no water, no towel, no sweating, just wearing my belt around my chest and having good technique.

There are times when my speech does not go the way I want, and as a result I have head movements. But it is nowhere near what I was like pre-starfish. I feel I have moved mountains with my speech and my body movements, but there is still a long way to go. I feel as though I am part of a life long team. Knowing that when I do have not so good days, there are people on the phone list who are there for me 24/7.

"This life-long support is what really makes Starfish what it is"

But, not just for when I have bad days, they are there if I want to ring up and just have a chat, using the best technique. This life-long support is what really makes Starfish what it is. Just knowing that there are all these special people you can talk to who not only understand, but also have walked down exactly the same road as me.

The Starfish Project has changed my life for good. It has given me a way to control something that has had control over me for 20 years. I love going back on the Starfish courses to see and talk to the people who have helped me so much, helping the new people gives me a brilliant feeling, and it helps me to help them!

Thanks to the Starfish Project I have not only gained a way in which I can achieve effortless speech, but have also made not only good close friends, but also soul mates.

Steve, Anne and the film crew

Special thanks to Anne, David and family, Nigel Ford, Hayley Sutton, Brian Boyle, Phillip Baugh, Michael Wyant, and everyone who has helped me on the course and on the phone list .xx

(and also to the film crew, Nic, Gabby, Nanu, and Simon who have been great.)

The programme went out at a peak viewing time, on a November Tuesday on BBC1 at 9.00pm. I am so nervous! I only hope it made people more aware of stammering and helped and encouraged other people who have a stammer who wish to gain control over it.

Steve Middleton

Steve Middleton talking on Radio 4's Saturday Live programme.