For Encephalitis Information Week 2021, we asked our volunteers to talk about how volunteering has helped them in their recovery.

For more on Encephalitis Information Week, visit our campaign page.

If you are interested in becoming a volunteer, please visit our volunteer page or email Laura, our volunteer manager.

John

One day in the National Rehabilitation Hospital in Dublin, I remember being invited to attend a group session for other warriors who had an acquired brain injury. Apparently, according to my diary, I initially declined the invitation. I didn’t think that mixing with other confused people would be of any help in my recovery. Eventually I was persuaded by my speech and language therapist that the group and myself would be a perfect match. I had now been out of hospital for about eight months. 

On attending the first of these, I noted that there was just one other member of the group who hadn’t been in an accident or wasn’t recovering from a stroke. By a strange and fortunate coincidence, he was a few months ahead of me on his road to recovery from encephalitis, of all things. Meeting Tom was a significant milestone in my own recovery. Having someone who really understood my frustrations was invaluable. I would meet up with Tom regularly outside of the hospital setting. His consoling words and reassurance, even though he was still obviously struggling to put the pieces of his own jigsaw back together, was an unquantifiable support to me. We quickly became the best of friends and still are to this day.

Once I felt I had recovered sufficiently, I began applying for one or two volunteering roles in the local community. Nothing too complicated. One involved supporting young offenders and the other one was with a charity working with cats and dogs. Following the interview process, I was told that the positions had been filled. I’m fairly certain I was turned down because of the encephalitis. I got the message, rightly or wrongly, that even volunteer societies, in need of people giving of their free time, didn’t want to risk taking me on. Feelings of self-worth and confidence were never as low as they were then.

I had been receiving support from the Encephalitis Society and could see on their website that they were regularly looking for volunteers. It took some time, however, before I felt that I could possibly have something to offer. It was months before I felt confident enough to apply. I had been attending Headway in Dublin for about a year and I felt great empathy for those whose lives had changed far more drastically than mine. I really wanted to give something back, especially to anyone whose struggles reminded me of the difficulties with which I had wrestled for the first year or two.

It was the awareness of the unique benefits of having support from someone else, whose journey had been similar to mine, which was the main impetus in me contacting Laura Bowditch in the office. A decision I haven’t regretted since. What a wonderful family of understanding, caring committed people. The support and encouragement which has come my way, has been nothing but extraordinary. The training I received, before I could wear my volunteer hat, took me a few months to complete as I spread it out by doing it at a pace at which I was comfortable. I found the programme to be incredibly well structured and of the highest quality and I learned so much more about encephalitis during these few weeks than I ever imagined I could, or would.

I am one of two support volunteers in Ireland, For the past two years, our support has primarily been through Zoom meetings and we are all looking forward to the day post-COVID-19 when we can meet up every now and then for a coffee and some regular face to face support as well as the supportive Zoom sessions which are held on a monthly basis. We are joined each month by the support volunteer in Northern Ireland. Laura is always there too to advise and remind us of the various types of support available through the Society. We have about twelve in the group who regularly join for support for either themselves, their children or their partners.

A lot of information about volunteering with the Society is available on the website so if anyone is even remotely interested, you are only a few clicks away from becoming part of a very welcoming and rewarding team. I cannot praise head office highly enough. They certainly make each one of us feel that we are significant cogs in the wheels of the success of the Society.

Natasha

I always wanted to be strong. I always wanted to be knowledgeable. I always wanted to help people. But, until recently, I never thought about volunteering.

It wasn’t that I didn’t have the time or inclination to sign up to be a volunteer, it was that I never saw what experience I had to help or make an impact. I doubted myself and I masked my value behind it.

I had encephalitis when I was two years-old. A toddler at an age most people have little or no memory of anyway. That’s true for me as well, I don’t remember in detail. My illness has been recounted to me through the narratives of family and enhanced by research and workshopping I’ve done with neurologists. So, for a long time, I felt like a fraud calling myself a ‘survivor’ and engaging with people who remembered their illness and are living with life-long consequences of encephalitis.

Somewhere through my journey, I got the confidence I needed to sign up to become a volunteer and realised just how much impact I could have. Being a volunteer isn’t about how much knowledge or experience you have with something, it’s about a passion and desire to improve the world around us through acts such as raising awareness, encouraging donations, or supporting those impacted. And I can do all that and it’s incredibly rewarding. But the real bonus? Getting to work alongside so many others to do so. So many stories, so much pain but so much happiness and bravery runs through the society and everything volunteers do. Volunteering also gives you the opportunity to connect with and learn from people you’d otherwise never meet. And the shared ground isn’t even encephalitis, it’s a passion for a common aim – raising awareness. Volunteering gives you so many skills that are helpful in all tasks and walks of life, from teamwork to communication.

And the best part? It’s all free.

Sarah

As a family we first had contact with the Encephalitis Society in 1998. Our son was diagnosed with viral Encephalitis. What we didn’t know then, was that this journey with Nicholas would last twenty years until his death in 2018.

Nicholas’ death left me devastated, reeling, rudderless and utterly bereft. Two and half years later and following his birthday in 2021, I felt more able to look at a future without him. The pandemic had put a halt to ‘normal life’ and whilst this had an emotional affect on me, it enabled me to look inwards and be quiet for a prolonged period of time. I was able to focus on myself more; in addition to the roles of a wife, sister, mother and friend. I had retired just before Nicholas’ death after thirty plus years in the NHS as a Nurse and Midwife; another demanding role had ceased.

The role of an Information Volunteer with the Encephalitis Society, seemed perfect for me. I first had contact with the Encephalitis Society in 1998 when Nicholas was diagnosed with viral encephalitis. The contact remained sporadic over the next twenty years, mainly seeking advise. Nicholas died in 2018. To honour Nicholas’ memory our extended family and friends ran The Great South Run in 2019, raising in excess of £8,000 for the Encephalitis Society.

Alongside by midwifery career, I had spent the last ten years reviewing literature for International Journals prior to publication. Thus, an Information Volunteer role seemed perfect, and within my comfort zone as I’m aware that I’m not ready for a role of providing support to others yet. Six months into this role, I have reviewed differing types of literature both internal and external to the organisation. I hope that I’ve been able to provide a different perspective on the literature both professionally and personally. 

Lucy

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