The committee has had many conversations over the last year around the subject of how to attract volunteers to help our Association.  I understand it can be a daunting thought, not only having to deal with the restrictions Trigeminal Neuralgia imposes on sufferers, but then, add the thought of offering your help, when you have no idea how you are going to feel from day to day, and sometimes moment to moment.
Then of course there are the questions, “help to do what?“, and “for how long?”
You don’t launch yourself into the unknown in normal life, so why would you do so to volunteer.
Life decisions are generally built via research and investigation, coupled with a time and cost evaluation, what job do I want? where shall I go on holiday? where do I want to live? what schools will the children attend?
So it is a bit naive to think a person will volunteer their precious time, even to an Organisation that they care about, without following through with a robust consideration process.
My own journey into becoming a volunteer has been brewing in the back of my mind for many years but without a place to reside. When our family was young life was all about schooling, careers, bills and just making it through the normal dramas of life.
We migrated to Australia in 2002, and I became aware of many volunteer organisations, SES, Rural Fire Service, The Lions, Life Surf Saving being the main ones. In the back of my mind I thought I might get involved with one of these organisations one day. And that is where the thought resided for many years, as we created our new life in Australia…..dormant.
My working life was always extremely busy, very demanding, with long hours, so to volunteer was not an option at that point.  Then grandchildren came along, and precious spare time was devoted to them.  In my mind I was volunteering my time to help support them and provide activities that busy parents just didn’t have time for.
And then I required open heart surgery and a pacemaker, which slowed me down a bit.  I took the opportunity to retire early, life is too short after all.  Perhaps this was the time to volunteer?  Not so, I worked through my physical recovery, then worked through my mental journey of reconciliation that a little piece of machinery implanted in my chest, was keeping me alive. Then the realisation, that, coupled with getting older, I didn’t have the physical stamina to run around like I once did or do hours in the garden.
So I adjusted to my new normal until once again, it was not.  We were in the process of executing the next stage of our life in 2017, down sizing to a cabin on our sons property, and a countdown to Patrick’s retirement, when he started to get weird symptoms and feeling generally unwell.  In that time he was keeping the magnitude of what he was dealing with, to himself, and it wasn’t until 2020 that he was finally diagnosed with bi-lateral Trigeminal Neuralgia.
And that is where the thought of volunteering popped up again.  We attended our first support group meeting in April 2021 and it was mentioned that the Association needed a volunteer to take over the Secretary’s role.  If I am honest with myself, the skills required matched what I could offer, and at that time my focus was on Patrick’s well-being and learning about Trigeminal Neuralgia. Was this perhaps, the way I could connect with people and professionals who could miraculously fix him? Of course when I was handed over the duties, my business background kicked in, and so started the process of increasing and improving our digital outreach program.
I have a results driven approach to everything in my life, so for me, if I was going to volunteer, I needed to set in place a structure where our Association could grow. As President I have a duty to ensure my tenure complies to our mission statement to advocate and support all sufferers of Trigeminal Neuralgia and that is my prime focus.
I haven’t been the only volunteer to step up in the last 18 months.  This year Sarah Wilkinson, a young suffer of Trigeminal Neuralgia living in Newcastle, has joined the Committee of Management too, and offered her skills in spatial data analysis. Gay Roberts in Adelaide, who has been helping our long standing Support Leader Graham Boyer, took over the lead role in the Support Group. Kim O’Donnell, a new member who has experience as a counsellor, expressed an interest in setting up a Support Group in her area the Lockyer Valley. The inaugural meeting is next month. And I welcome these amazing people to our volunteer family.
In business you have to provide a support framework in order for people to excel, and Charity’s must operate in the same way.  We value all of our volunteers and in order to support them, to support you, we have now completed a training module for volunteers to work through to reinforce knowledge, and act as a reference resource. All of our new volunteers are working their way through the modules at a pace that works for them.
We recently published a member’s survey and a couple of members have expressed a wish to volunteer in some capacity.
So that brings us back to the “what am I volunteering for?” and “how long am I volunteering for?”
To answer these questions we are creating an organisational chart to show the areas we need people to volunteer, and if you have skills that fit, why not consider our “Volunteer for a Year”, or “Volunteer for a Project”, program which will be launched next year.
We don’t want anyone to feel a heavy weight of responsibility when they say yes to volunteering.  We want every volunteer to feel excited and motivated and able to look back on their year, or project and feel accomplished and proud. Our Association has provided services for 20 years, making a profound difference to many people and when you can make a difference to just one person then everything is worth while.
I recently attending an online training session run by the Facial Pain Association in America, and one support group leader was worried that at her meetings, she sometimes had only a couple of attendees.  What the counsellor said was very thought provoking…
We have to put aside our own expectations, and ideas of success, and concentrate on the needs of the people who we are volunteering to help. If just one person attends and receives the help and support they need, isn’t that enough?
So what roles do our Association need to fill
- we need a Twitter account manager
- we need fund raisers,
- we need a membership manager,
- we need a secretary,
- we always need people willing to run support group meetings, online and in person,
- we need a replacement Support Group Leader to take over the Melbourne area, because our current leader Emelye, who has been in the role for many years, needs to step away and concentrate on other things,
- we need a person to take on the Light up in Teal International Awareness Day each year
- we need event planners to help us organise conferences and webinars
- We need creative people who can utilise our Canva Licence and produce marketing material
- We need an indexer to work through our newsletters, so we can reference material already produced
- we need content writers to provide articles for our website
Quite honestly the list of things is huge, but just like eating an elephant a bite at a time, if we create an opportunity for a sufferer or family member to contribute just a little, we will be serving all Trigeminal Neuralgia sufferers to the best of our ability.  I really cannot ask for more.
FACIAL PAIN: A 21st CENTURY GUIDE 4 What to Do When Your Surgeon Says There is Nothing Left to Do For People with Trigeminal Neuralgia Neuropathic Pain By Jeffrey A. Brown, MD (USA) You think you will have a microvascular decompression (MVD), but there is no compression. Your pain returned after your MVD, and your doctor […] 
I had my first attack in 2015 this 22nd December. I was visiting my mother in S.A. for Christmas. It was late at night before I was going to bed. It was a violent pain that started in my eyebrow on my left hand side of my face. It ran down through my eye, nose, […] 
