Dancing In The Rain – A Song About Breathing Disease

• In this post, Amanda shares her experience of participating in a respiratory singing group with a focus on wellness. 

• Amanda describes the process of writing and recording her own song entitled ‘Dancing in the Rain’ which explores some of her feelings around living with breathing difficulties. 

• Amanda also reflects on the importance of music in her life. She describes how singing in a supportive group environment has enabled her to continue to enjoy being musical, despite experiencing challenges with her health. 

‘Dancing In The Rain’ was inspired by living with respiratory disease, chronic pain and disability. The loss of self with illness is difficult and grief over previous abilities is deep. But, accepting and adapting to this different life, enables living in the present and appreciation. Everyone is at different stages. Nobody is a comparison. Everyone is included and loved.

So, my song came about with Singing for Wellness, a respiratory singing group in my home town of Okehampton, Devon. When I first turned up it was just post-Covid 19 and after months of shielding. I was apprehensive and scared. The team of professionals and volunteers welcomed me so warmly, and soon I was attending weekly sessions and making new friends. As we all have respiratory disease I didn’t have to explain or justify myself. We all get it and share a necessary dark sense of humour which comes with living with long-term health conditions. The group is run by Wren Music and their inclusive approach is definitely a breath of fresh air, pun intended.

Paul Wilson leads our group and we enjoy half an hour of professional pulmonary exercise before we sing. Coughing is encouraged. It is a major benefit doing these fun exercises as a group as it really normalises and enforces the importance of breath. The project originated at the University of Plymouth with Kath Donohue (Academic Lead, Physiotherapy Associate Head of School (Student Experience and Inclusivity), School of Health Professions, Faculty of Health). Kath works with Marilyn Tucker, CEO of Wren Music on the project. It is exciting as it involves singing at different levels of breathing included in songs. For example, allowing different places to breathe in a song means I can pick the version which feels right for my particular day. After recovering from an exacerbation (chest infection) I will need to take more breaths. It is thanks to Kath that my health care became joined up. I work nationally to improve personalised care and now it is happening for me, self-advocacy has eased.

After a few years of Singing for Wellness, as group members we have quite a collection of respiratory diseases (plus other conditions) between us which include: chronic obstructive pulmonary disorder (COPD), dysdiadochokinesia, emphysema, essential thrombocythaemia, facioscapularhumeral muscular dystrophy (FSHD), lymphangioleiomyomatsosis (LAM), mild cognitive impairment, relapsing polychondritis, tracheobronchomalacia, rheumatoid nodules, sleep apnea and swollen vocal cords. It highlights there are a variety of conditions and creates a whole world of awareness of both rare and common diseases.

For my own song, Paul helped me to refine my words and music and we spent time over coffee making it into the final version. This was so enjoyable and it was wonderful to work with a professional musician. The natural flow gives plenty of time to breathe - says me with a gasp! There is a mellow tone to the verses showing the difficulty of breathing, then the chorus opens into how I live with a smile and why. It is frowned upon in our society if you show joy despite pain. How is it possible to smile with it? Having lived with endometriosis since the age of 10 it is a learned necessity of masking in order to fit in. But, through life this has become my reality of choosing to see the positive. The only way I can do this is by living minute-by-minute. If debilitating pain hits it is mostly unseen. The photos of joy are moments captured for life reminders. I don’t want to photograph my pain which is always present. My pain threshold is very high as a result - my 10/10 pain is unconsciousness (I have been there). All of these different learned experiences validate my life but don’t take away from or compete with yours.

The rhythm in my song deliberately follows breath, and ‘breath-ing ma-chine’ particularly highlights this. I also refer to pacing; a new concept for me as I have always pushed through too much; I am much better for having rest and giving myself permission to do so. Linking music with breath means a lot. I have played piano since my early childhood, now I also play harp and baritone ukulele. Wren Music have supported me with these too. When I first developed breathing troubles I was very frightened. It was during the Covid 19 lockdown, but I didn’t have Covid. It was difficult. I couldn’t breathe enough when sitting, standing, eating or anything. It was thanks to my specialist rheumatologist that I was diagnosed quickly with Tracheobronchomalacia from my Relapsing Polychondritis; a blessed outcome after struggling for years with misdiagnoses in the past. I thought I would never be able to sing again. Singing for Wellness brought my singing back and gave me permission to express myself through music and song. Music, health and soul combine, music sticks to your memories forever and lasts into the dance in the rain.

Here is my song, with images highlighting the words, I hope it resonates. Do turn on closed captions for the lyrics.

Those singing are: Hilary, Shirley, Liz, Mark, Sylvie, Amanda, Paul, Geoff, Irene, Andrew, Alan, Peter, Mike, Judith, Zeke, Mary, Pete, and Paulo on sound.