You haven’t lost who you were

By: Ruth

I wanted to be a musician for as long as I can remember. As a child I started learning cello and then added saxophone. I went on to study music at the Royal Welsh College of Music and Drama, but I never finished the course. Undiagnosed EDS symptoms kicked in. My jaw kept dislocating when playing saxophone. I couldn’t carry my cello around and playing made my arms swell up. At first I thought I was taking a leave of absence and I would get better and finish the course, but that didn’t happen. I felt like a failure and got very depressed.

All was not lost though. I could still play. Classical soloist musicianship as I was doing at college is incredibly demanding, but there are less intensive forms of music. I joined a funk-band and started gigging. I also did session work and played for the theatre. There was also private teaching work. To bolster my income I got an office job working for the Welsh government.

Eventually playing in orchestras became too much as well and at age 29 I quit theatre work but carried on gigging, which I absolutely loved. My band, Kookamunga, garnered success earning us spots on Welsh television.  My husband, who is a fulltime music teacher and composer, joined the band too. But five years ago my health took a drastic downturn. My gastro-intestinal system packed in, my autonomic system and other organs went haywire and I would be in hospital for months on end. I felt terrible about letting my students down and I actually had my students come in and tutored them in the hospital chapel. This helped keep me sane during the hospital stays. Amazingly I wrote some of my best compositions while in a hospital bed.

Gastrointestinal issues in EDS and HSD

EDS and HSD can cause acid reflux, chronic/recurrent indigestion with pain, constipation, abdominal pain, bloating, diarrhoea and a feeling of general abdominal discomfort.  Laura Brockway, wrote and article for us discussing why these symptoms occur and identifies some of the tests and treatment strategies your doctor may suggest.

Read the article

Losing the career in music that I had imagined and accepting that I can’t work fulltime has been heartbreaking. But I still have ambitions.  Right now I’m teaching at home three hours a week, but I’m hoping to eventually get up to 10 hours.  I also want to focus much more on composing. In fact I composed the backing track for the EDS film ‘Issues with my Tissues’. It would be amazing to do a music project with fellow EDS musicians around the country.

When you get ill and can’t work it’s natural to grieve for your old life. But it’s important to realise that you haven’t lost who you were. You just need to approach it differently.