Tag Archives: dystonia

The Architecture of Sound.

In 2010 I developed a condition that took away my ability to speak, not being able to make sound and communicate with the outside world was the most isolating and devastating experience, which lead my obsession of researching other forms of communication, other than spoken word.

I have been a professional singer/ songwriter for 20 years, I have also developed and delivered music programs within the community with a focus on using music and creative arts as therapy. Through my research into sound, I have discovered papers and research programs showing scientific evidence of the effects that sound has on our brains, emotions, body and even our cellular structure.

Continue reading

All in the bigger picture.

If someone would have told my 20 year old self what was ahead of me, I think I may have jumped of a cliff. The thing is if you were told what was going happen in your future you wouldn’t experience the inner growth or emotional part of the journey, and I think that’s the most important part. We are born into this world as a blank canvas with the thread of the canvas holding some of our parents and relatives genetic make up. Being told at the age of 4 that I was adopted was easy to accept but as I grew older I wondered which parts of myself were learnt behaviour and which parts were deep inside my DNA.

As young as I can remember I wanted to be a singer and dancer. I wanted to go to stage school at the age of 7 I had researched the price and place. My mother was horrified, being an adopted only child my mother suffered from separation anxiety. I took every opportunity to sing and dance to anyone who would listen. I would set up my garage with an old gramophone. In the late 70,s this was an antique and it would only play really old songs, my favourite being the Banana Song. I would sell tickets to the kids in my street and surrounding area and of course I was the star of the show. At the age of 21 I was a fully fledged professional actor/dancer and singer. I was working in the day as an actor in various dramas and films, and in the evening singing, songwriting and producing dance music. My life was full of work but not many friends I was never in one place long enough. At the age of 28 I decided to start working in background within the music industry, I was working in artist development and as a singing teacher.

I felt the need to find out where I came from and who my birth parents were so I contacted Barnados, which was the children’s charity that my adoption process was done through. I had to attend numerous counselling sessions to ensure that I was emotionally stable to cope with the situation. After about 6 months of sessions I was finally handed a file which contained information on my birth parents , siblings and situation.

I contacted my birth mother via a letter sent to the address listed for her electoral register. I was contacted by her sister and a meeting was arranged. Her sister had told me that she was mentally unwell and that she didn’t speak much. I prepared myself and finally there she was. I was introduced to her as a friend of her sisters, so that it wouldn’t upset her. She stared at me for what felt like forever, I knew she knew who I was. We met up again once more and she told me she knew who I was. When she spoke she appeared to be in pain and her face would go scarlet red. I thought this was due to her mental health problem, but later in life I was to discover something that could have changed the course of her life, if she and her family had have known.

After having my first child I set up a stage school called Stage C.A.M.P an alternative school to Stage Coach that would be affordable to anyone aged between 7-21. I did some wonderful work with the young people. Writing and staging original musicals throughout Wales.

In 2008 my father became very ill and later passed away with motor neurone disease. I had a young family to look after so I decide to put stage C.A.M.P on hold for a while, but being the type of person that I am, I have always felt I have to be doing amazing things to qualify my life meaning, just being me never felt like enough. I decided to write an album, a now or never moment. I had a little free time for the first time in my life and felt like I needed to use it wisely. Just after I recorded the album I started suffering with a terrible croaky voice, and some days no voice at all. At first doctors told me it was a virus but it went on and on. Then they said acid reflux, depression, anxiety and finally after 4 years I was diagnosed with vocal dystonia, otherwise known as spasmodic dysphonia. In those three years all the friendships I had built up, my business connections, and the album suffered. I found myself day after day sitting quietly in my own space until my children got home from school. My throat would lock up violently in mid sentence and the pain and embarrassment I would suffer was sometimes unbearable.

I decided I could either be a victim or a fighter and just work around any obstacles in my way. I tried every single therapy possible but nothing helped. I began singing again and to my amazement I could sing even better than before, but not speak without most of my voice cutting in and out. I took it upon myself to set up a Facebook group for fellow sufferers, even though the condition is rare the group grow to a healthy number of members. I made some brilliant connections with people and finally had people’s support who really understood this awful condition.

In 2011 I released my album, it was album of the week on various radio stations in the UK and being played on Internet radio in America and other parts of the world. To promote the album I did many radio interviews, which for me was a massive step as I was so embarrassed and scared of speaking due to the pain, I would never have imaged I could have done it.

I started teaching again only for few hours each week, which helped with my emotional well being. I informed my fellow workers and students and they were and have continued to be really supportive and understanding.

I have found it hard to except that I am no longer a professional singer. I am no longer singing and being paid due to the fact that agents, and venues etc do not understand that I can still sing and cannot talk. They are to scared to book my services, and I have to say I think I would feel the same. There is fierce competition within the music industry and you show a weakness, and that’s it game over.

In 2014 I spotted an add in the local paper for full time art course enrolling now. I went for an interview took my paintings and sculptures, which is what I had been doing in my free time and was excepted onto the course, from there my life was about to change. I am know on a full time Fine Art and Design Degree and life is exciting again. I am learning new skills, renewing some old skills, joining new communities of like minded people, and finally falling in love with music all over again.

I mentioned my birth mother earlier in the blog the reason for this is that Dystonia is a hereditary disease and the redness that happened in her face when she spoke, happens to me when I talk my voice locks up in my throat. I think
there is a possibility that she could have the same condition and if they would have known what they now know she wouldn’t have been taking into a mental health hospital, which is where she remains to this day.

There is still so much to know about dystonia, doctors, healthcare professionals and the general public still may not have heard of it, and I hope through my art I may be able to help raise awareness and educate people about it.

As I am writing this blog I am on my way to London to meet some of the members from the Facebook group that I have set up. Their stories are similar to mine in that their work and social life’s have suffered due to this condition that we all share. One in particular was a famous successful singer throughout the world in 70s and 80s. When your voice is your lively hood this condition has a massive impact and I take comfort today that I will meet someone who will really understands my journey.

I state that it’s a journey because that’s what life is, a series of events that alter your conscious and sub conscious. Mine has altered tremendously since my 20 year old self. I am such a nicer person now. I have empathy, patience and understanding. I am aware that I am not the centre of the universe and I have developed an ability to change course when the other course isn’t working.

The things you feel were so important are no longer important. Being a success is no longer my main drive but being happy and true to myself is. Which is why I am making this journey alone today all the way from Cardiff to London, and being reflective.

It’s all part of the journey.


Its not very often that someone inspires me, but today I have just discovered a painter who is blind. He is a complete inspiration to any one suffering a disability, his name is Sargy Mann. This man has ignored his disability and become a world renowned painter. He has not let his disability take ownership of his identity, which as a disabled person myself I can tell that is a very difficult thing to do. You not only have the inner demons shouting in your brain but you also have the surrounding environmental factors to contend with, such as when your doctor tells you there is no cure for what you have, you will have it for the rest of your life and thats it!

I was a full time professional singer/songwriter, singing teacher, with an album just recorded ready for release, and a busy stage school running over 7 schools around Wales. I thrived on stress and loved working to all the deadlines for musicals that I had written, and singles set for release dates. I woke up one morning with the most croakiest voice ever, that day I had rehearsals with my band and two singing classes of 30 adults to take. I continued to battle through, because that is what you do when your self employed and in the music industry. You are always aware that someone may steal your spot so you have to soldier on and keep this spot clear of predators.

Over the weeks and months my voice and chest became so bad that I had to give up my teaching for a while. I had seen over 7 ENT consultants, constant cameras up my nose, and down my throat, 3 speech therapists and so many doctors appointments, I cannot even remember. For this voice issue I was suffering from, I was offered Anti Depressants, Counselling, and Speech Therapy all did not help and my condition got worse to the point that I had lost all my contracts in singing and teaching. The ironic thing was I could still sing, sometimes some of my lower range was a struggle but my falsetto was almost angelic and better than it had ever been. How could this be I could sing but couldn’t speak without suffering really bad pain and spasms in my throat. I continued to sing and record in my home studio but I became very anxious about speaking with people, due to the fact I was in pain when I did speak.

It took 3 long years to be diagnosed with Laryngeal Dystonia. In that time I had a part time job with the local council teaching young people aged 11-25 performance skills, animation and film making. The young people just seemed to except my weird voice and I also had a great colleague who was a massive help to me throughout this time. I was told that the condition was life long, there was no cure and it is very rare, so I decided to go public with my condition and raise some awareness for Dystonia. My hope in doing this was that people would know or maybe have heard of the condition when I would say what it was that I was suffering from.

I cannot tell you how embarrassing it is when you are speaking with someone and your voice and throat lock up and you cannot get words out, then when they do finally come out they are all broken up. Talking is like walking a tight rope for me. You then have that embarrassing moment which feels like an eternality when the listener is just staring at you in disbelief.

I now have treatment for my condition. I have botulin injections into my laryngeal muscles every 4 months. Being a singer and part time/singing teacher, YES I am back teaching! this is a nightmare as my vocal chords are constantly changing, so I have to keep retraining them and doing strange vocal tricks but I always did enjoy a challenge.

So against all adversity we have a blind painter and a singer/songwriter who without poison being injected into her throat cannot speak.

Do not let your disability become who you are, you are much more than you will ever take credit for.

More information on Sargy Mann

Visit my music store: Lianne Morgan 

Enhancing human kind and cyborgs

I recently sat in on a conversation with a few colleagues who attended The Makers fair in Rome 2014. I was in awe of what they discussed, 3d printing food, humanoid robots, and the first human cyborg. The cyborg had an implant that was surgically inserted into his brain, it had a vision apparatus attached where he could view colours, apparently he was colour blind. I was not there and do not have any literature or links to back this up, but still all sounded really exciting, and similar to something that I would like to create, although not vision but sound related.

To make the marketing statement of the first ever cyborg is a very impressive statement, but I am afraid very untrue. There are many cyborgs walking around us every day, such as humans with pace makers, electronic voice boxes, artificial knee,s etc. For your informative decision in this discussion, the definition of a cyborg is,  a fictional or hypothetical person whose physical abilities are extended beyond normal human limitations by mechanical elements built into the body. So I think we can agree most defiantly not the first ever human cyborg.

I suffer with a condition called Dystonia and through various societies and support groups I have had the pleasure in knowing some really inspiring people who without Deep Brain Stimulation  would not be able to lead a normal life. DBS is a surgical procedure in which electrodes are inserted into the brain. These electrodes are then connected to a battery usually implanted in the chest or in the abdomen. The battery operates similarly to a pacemaker delivering targeted electrical pulses to the brain that block the signals that cause the symptoms of dystonia.

How amazing is technology, science and human kind that together we can invent such amazing creations.

I plan to add to the world of cyborgs with an invention that will help people with Vocal dystonia, who are not offered DBS.


My journey begins with cymatics, and frequencies  and lots of making.