I’m Louise and I live in West Berkshire with my husband, Mark, and nine-year-old son, Jacob. We live in a house with a stair lift, a garden and enough space to be creative in – something I have never been more grateful for!
Art is often a lifeline to me and has been especially so during these strange days of Covid-19 lockdown, particularly when I don’t have my usual outlet of regular swimming. As well as being a mum and working part-time as a counsellor and therapist, I enjoy drawing and creating visual arts. Before the coronavirus crisis started, I was already working 100 percent online as a therapist. Video counselling works well for lots of people – not just during lockdown – and is particularly beneficial for people with disabilities and their carers, particularly from a practical and energy conserving point of view.
I was diagnosed with limb girdle muscular dystrophy in 1998, at the age of 20, and since then have lived with a slow but sure decline in mobility and increase in muscle wastage and weakening. Life can be difficult – filled with all the highs, lows, joys and sorrows that many of us share.
The grief of loss is always present when living with this disease but on the flip side, it certainly has a way of sharpening life and bringing focus to priorities and choices. Everyday life can be a real struggle, from the moment I pull myself up from my bed in the morning to the moment I collapse back into it at the end of the day – and everything in-between (from the school run, medical appointments, swimming, managing energy and pain and seeing clients online, to trying to make space to care both for my family and for my mental health).
Life can be tough but it's definitely not boring! I wrote more about the relationship between muscular dystrophy and grief in an article for Muscular Dystrophy UK's Target MD magazine in May 2019, reflecting both as a patient and a counsellor alike.
And a few years ago, I wrote to BBC Radio 4’s Woman's Hour to ask if they would be willing to run a piece about being a disabled parent. They rose to the challenge and asked me to provide them with a “fly-on-the-wall” audio diary, recording moments of life as a mum with a disability, which I did, along with a series of interviews.
My friend Catherine, who works as a producer and reporter, was convinced from the way the piece was received that there was a lot more potential for making more material that we could use to produce more radio. Together with another producer and media company, and the result of a year’s work, we have ended up with three 30-minute BBC Radio 4 documentaries called Walks Like a Duck (a phrase taken from a highly amusing incident when a medical student was asked to describe my gait – and this was his response! I expect the student in question learned from the experience!).
The documentaries follow various themes from my life as a person with a disability, living life, being a parent, a wife, a therapist, and a friend, among the daily grind, the ups and downs and the deeper reflections. It is raw, real and will hopefully be both eye opening to those who have no personal experience of disability and reassuring for those who do.
- Walks Like a Duck will be broadcast on BBC Radio 4 on Monday 6, 13 and 20 July at 11am. You will also be able to listen to the series on BBC iPlayer.