Finding My Tribe
Back in 2020, during the famous pandemic of COVID-19, something wonderful was about to start: something that would change the lives of all those who got involved.
I looked forward to meetings each day
At that time, I had been volunteering for the charity Narcolepsy UK. A decision was taken to host daily meetings to keep an eye on its members to ensure everyone was coping with the changes brought about by the pandemic.
I was assigned Wednesday afternoons. The meetings took place from spring until late summer. They were well attended until people started to go out to work. It was felt that daily meetings were no longer needed as before. It was such a sad time for me. I had really enjoyed them and had looked forward to them each day. I could see how the members were benefitting from them in a positive way.
The beginning of a new adventure and friendship
In September, a fellow member, Heather, and I decided to raise money for the charity. Heather made t-shirts and I did t-shirts and badges with a logo that my sister Adaia and I designed. The logo was 'Naps4Life' with a sloth in the middle. Our endeavour was a success.
Around this time, Julie Flygare contacted me about her friend who was coming to the UK. She suggested that I reach out to her since she also has narcolepsy. I told her it would be my pleasure to help. This would be the beginning of a new adventure and friendship.
A shared love of advocacy
My adventure with this firecracker started with video calls and phone calls. We even did a podcast together and discovered we both have a love for advocacy.
When I mentioned to her about the Zoom meetings we had been having earlier, she could not understand why it had ended and suggested that we start one on our own. I told her I had been thinking about it but would not be able to start one on my own — but if I had a partner to share the responsibilities, then I would be happy to go ahead.
How Naps for Life began
One week later, she called me and asked when we were going to start. I did not realise at first that she was serious. She said we needed a name and a logo. I had a professional logo already from the badges I had made, so she suggested that we were good to go. She asked me to send it to her, which I did that same day. Things went quickly from there.
The next day, a Facebook page was created. By the end of the week, we had confirmed the date for the first meeting, and she also made digital flyers. I was amazed to have met someone with such passion, and this is how Naps for Life began.
A safe place to fall asleep during meetings
Naps for Life (or Naps4Life) is a peer-to-peer group for people with narcolepsy. It was created to allow people with narcolepsy to meet via video and support each other. It is a safe place where its members are not reprimanded for falling asleep — rather, there is an understanding atmosphere. While hosting and on calls, I have fallen asleep many times.
We have been functioning for a year and five months. Our members hail from countries all over the world, including the United States of America, England, Portugal, Angola, Canada, and Jordan.
We have had a positive impact on so many lives
I could not have survived the pandemic without the support of these lovely people. Our members include doctors, nurse practitioners, medical assistants, marketing managers, and students. Little did I know when we started this journey that we would have such a positive impact on so many lives and continue to do so.
I thank God for helping me find my tribe. I look forward to our bi-weekly Zoom meetings. Our leadership team of five consists of Iris, Ross, Bernadette, Caitlin, and myself. We work well together. When I am having a very challenging day, I am confident that a team member will willingly step in to take my place for that meeting.
May Naps for Life continue to grow from strength to strength.
How would you describe your relationship with your doctor?