Litsa Breingan talks about her experience of chronic illness and how, despite total exhaustion, she has been able to pivot to helping her local community.
Litsa Breingan has barely been able to move from her sofa over the past year as a result of injury and illness, but she has been able to send out the odd email before being overcome by fatigue.
She has used that ability in her role as chair of the St John’s Society, a local community organisation, to work with her “amazing” committee of volunteers and help a neighbour to reach hundreds of families with his food bank. “I have discovered new skills and that I am quite good at organising things,” she says. “I am a rottweiler at heart. I can find the right person to contact and convince them to help the local community.”
Since she and her society helped to boost the food bank’s capacity, Litsa, a music teacher, has been helping to revive local parks in Deptford. For instance, they raised funding to transform one park – with new benches bins – and invited local art students to exhibit there. The park has gone from a place where many were afraid to venture to one where they picnic and enjoy art.
Illness has, however, badly affected Litsa’s ability to do the teaching job which she has done since leaving full-time education. She started her career as a secondary school music teacher and has worked as head of music at several schools. Just before she got married she gave up teaching, thinking she needed to get some broader life experience and worked for a bank, but soon realised office work was not for her. She was paid about the same, but the job was less demanding or intellectually stimulating so she returned to teaching.
When she had her daughter, who is now grown up, she realised that teaching full time was not compatible with having children. Her job meant she had to be around in the evenings and it was impossible to get childcare between 4pm and 7pm. She returned part time, but later decided to repackage herself and gradually moved from secondary to primary school, in part because she was dealing with a lot of young people at secondary school who had no understanding of music.
Litsa has been a primary school music specialist for 22 years, focused on the state sector, which she believes passionately in despite having to send her own daughter to private school because she couldn’t get her into the local secondary schools she wanted.
She says music teaching can be very powerful, for example, for engaging with children with special needs. Litsa has supplemented her part-time primary school teaching with private practice teaching the piano. “So despite being part time I was working full time,” she says. Litsa also does a lot of voluntary and music outreach work and is on the committee of the Bromley Festival of Music and Speech.
Litsa thinks the health problems she has had date back to her experience of Covid last year. However, she wasn’t tested at the time, so although she was told she had Long Covid, her GP was reluctant to record it as such.
The experience has been very scary, particularly since she knew something was wrong, but didn’t have a diagnosis initially. Litsa and her husband, who also has health issues, isolated early during the pandemic and she worked from home for the first term after having Covid, but her health deteriorated. She had her first doctor’s appointment in July after suffering from non-stop headaches for four months which she had put down to pandemic-related anxiety. She asked for a blood test to prove it was all in her head. CT scans and x-rays followed.
She has now been diagnosed with MGUS, a blood disorder which is characterised by a malfunction in the immune system and is linked to Covid. She is also suffering from physical and mental exhaustion. “Fatigue does not begin to describe it,” says Litsa. She is, for instance, unable to stand up in front of a classroom for more than an hour a day even a year on from her infection. She has spent much of the last year sleeping, lying on the couch and seeing doctors. “I sleep for 12 hours and then spend the other 12 hours doing very little,” she says. “I even had to lie down after a five-minute conversation and at the beginning I found it difficult to form sentences. Something neurological was going on.”
Other symptoms have included sudden weight loss and brain fog. Litsa had to write everything down or she could forget it. “I felt my head was full of cotton wool and that my memory had been removed,” she says.
In May she handed in her notice, concerned about the risk of working in different schools and being exposed to the virus again. Her focus now is on getting her health back. She can continue her private lessons online. She could take early retirement, but she would rather keep going until she reaches 60 and will probably do more voluntary work then.
Litsa has loved the community work she has been able to do over the last year. She wrote funding proposals to get old benches replaced and asked for flower donations. The annual arts festival was looking for a space for their artists to exhibit and the St John’s Society asked them to consider a local park. It became an artists hub for four days. It had been muddy, full of litter, needles and condoms before. All that was cleared and local families have started using it again. Litsa says that the Covid experience has highlighted the importance of open, communal spaces for people’s wellbeing.
She says the voluntary work has been very fulfilling and she is at a point in her life where money doesn’t matter as much. “I like putting something back. I have been almost disabled by illness, but I am determined to do something positive and not just lie in bed and be miserable,” she says. “I was very angry at first, but that is not me. Instead of doom and gloom I found that there are so many things I can do. It’s just a question of thinking laterally and being realistic. Thinking about what you can do rather than what you can’t.”
*St John’s Society can be found on Twitter at @StJohnsSE8 and on Facebook at https://www.facebook.com/thestjohnssociety/
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