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Handling disability at home and at work – Rachel writes

Updated: May 19, 2022

"For seven years I’d been living with a diagnosis of M.E. and for the first two of those years I was confined to bed much of the time. As I learnt to manage my condition better, I could spend more time out of bed, but needed frequent rests. In time, and using Giving Voice (GV), I eventually reached a point where I could start looking for work again – at the time I was in my 30s and a single parent.

Establishing a resting routine at home ...

By now I had begun a routine of resting every day after lunch ... I’d learnt to do this whatever I was feeling - not tired at all, too tired to rest, and anything in between. I often rested with a song in my heart.

When I was offered a job, before accepting it, I explained to my manager that I would need a ‘reasonable adjustment’: a daily 20 minute rest after lunch, lying down. She was great and saw this as no problem, so I started part time work.

... and at work

Every work day after lunch, the meeting room was booked for my 20 minute rest. I had sheep skins and a blanket to lie on, an eye mask and ear plugs, and an alarm clock. The song I had in my heart, every time, was A Way Through Uncharted Territory. I was definitely in uncharted territory: starting a new job after years of severe illness and disability, and attempting to enrol my employers so I could maintain my functioning.

The words sank into my body and became reality: letting go of fear, anxiety, tension and stress, letting in love and breath and feeling parts of me joining up into one whole. Relaxing my brain and thoughts, experiencing trust, sensing my heart, becoming really present. Feeling joy, feeling rested and the deep joy in that restfulness. This state of being pervaded how I was at work every day, and how I was treated at work too.

Using GV, I’d done loads of work on my feelings and thinking patterns in relation to being ill, let go of much resentment and bitterness, and was in touch with the joy and miraculousness and purposefulness of being back at work. It felt remarkably easy, and I rarely had time off sick.

Changes at work

We moved offices and the meeting room was lost. Instead I had to rest in my manager’s office. This room was in high demand for other meetings and for her to work at her desk, so the whole team of 20+ had to juggle the availability of this room. My need to rest was always accepted and accommodated: by me and everyone else. At one point I felt upset about being singled out as needing the room to rest when other people needed the room just as much for other purposes. My manager had the brilliant idea of making a sign for the room when it was in use:

'do not disturb: meeting or resting in progress'.

My rest was put on an equal footing with meetings. Another radical change that became normal and part of the culture at work.

Then the manager left and a new manager arrived. I continued to rest every day with the song and together the team and the new manager found our way through that new territory.

Recommitment and reconnection

As my recovery progressed I was in danger of becoming less disciplined about resting, because I could get away with it on some days, and function through the day. But I very quickly learned that if I skipped even one rest, it would have a cumulative effect for days and weeks afterwards, and my health would deteriorate. So I did some more work with the song, to recommit and reconnect to my routine. The new manager even started reminding me to rest if by 1.30 I hadn’t done so. The fantastic support around me continued.

Resting when out of the office

When out on a training course for example, whoever booked me on it would request a place for me to rest, and an extended lunch break for me. I was very moved by the positive response of all sorts of organisations. Sometimes I had to do some internal work to avoid feeling embarrassed or isolated, but often the trainer or people at the venue were so lovely it was a pleasure. I rested in all sorts of places: libraries, counselling rooms, faith centres, on floors and sofas and yoga mats. On one memorable occasion the training provider booked a hotel suite for me to use for free and I had 20 minutes of luxury!

Being inspired and inspiring others to rest

Once I was delivering a training course with a co-trainer from a partner organisation. He was really supportive: we didn’t have time for an extended lunch break so he ran the session on his own for 20 minutes after lunch while I rested. Later he said he often felt too tired to work in the afternoons and, inspired by me, had approached his own work place with the idea of creating a space to rest at work. He told me they have now provided a bed and all the employees can use it when needed.

This song almost instantly takes me to a deep place of rest and relaxation. With a bit more effort it can also take me to a place of deep joy and ease, which can then be present in my work too. This means I and other people experience my resting as positive rather than disruptive, less of an interruption and more of a benefit. I love it and it helps me love myself and accept myself as someone living with illness and needing adjustments. It helps me experience these adjustments as gifts.

Thank you Jill for this amazing song and for GV. It enables me to participate in society as a disabled person, to give something back, to have a job and earn a wage to support myself and my child.

"After more than 4 years I sometimes rest with different songs, but often, still, with Uncharted Territory.”

Note from Jill: Rachel had already done a lot of GV before her diagnosis, and she had also undergone the longish training and apprenticeship to become a GV teacher. So she was extremely skilled. Both she and I hope that her detailed description might help others who want to explore using GV to support them through illness and/or at work. If Rachel's managers were emulated elsewhere, who knows what life-enhancing possibilities might transpire!

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