First published July 2015
The Miracle of Volunteerism
by Michael Pasternak
The success of The Facial Pain Research Foundation is a testament to the “Miracle of Volunteerism”.
Over 98% of the monies raised go directly to the research programs. We have no paid employees and minimal overhead costs. Our volunteers work daily distributing public service announcements, sending thank you letters, writing WebNewpaper stories, overseeing Facebook and Twitter, writing and sending out the FPRF Mini-Newsletter, answering scores of email and telephone calls, interacting with the scientific community, and a myriad of other tasks that keep the Foundation running.
Volunteers are also responsible for raising millions of dollars in an amazing variety of ways. They have organized walks and races, musical and golf benefits, comedy nights, dance performances, book, jewelry, art, and clothing sales, wine tastings, zumbathons, raffles, auctions, distributed jars and other collection devices.
And, of course, there are those volunteers who simply ask others to donate money in order to help the Foundation reach its goals. We have received everything from a one dollar donation to hundreds of thousands in grants and gifts. Volunteers also work endlessly to raise awareness of trigeminal neuralgia and related neuropathic pain and encourage more volunteers to help find a cure.
I would like to highlight the contributions of one individual who embodies the spirit of the “Miracle of Volunteerism”. Her name is Karla Gudgeon and she is from the UK. Among a variety of other fundraising activities she designs and makes beautiful greeting cards and donates the proceeds to The Foundation. If you would like to know more about Karla you can go to past editions of the WebNewspaper. She continues to amaze us with her fundraising and personal stories of commitment to our search for a cure. I recently asked Karla to share with us some of her journey. I know you will appreciate the following inspiring story:
Beauty Beats the Beast
Hi everyone. Some of you may already know me. For those who don't I am Karla, nicknamed Athena, a 24 year old (well nearly!) trigeminal neuropathy sufferer from England. I got trigeminal neuropathy, which is the same symptoms as trigeminal neuralgia but caused by trauma or nerve damage, six years ago after an operation on my jaw went wrong. I have both TN and ATN symptoms which means I have pain 24/7 but with sharper 'lightning' attacks at intervals. I also have severe hemorrhaging from my jaw and a collagen disorder called Ehlers Danlos Type 3. Sometimes it feels like my life is a catalogue of hospital appointments, medication (that never works on me and always causes worse side effects!) and TN attacks. Many of you will know how this feels, and it is easy to get depressed and let it take over. I have moments like this too especially as my condition has now led to me going unconscious 10-20 times a day, often with no warning. This had led to the loss of my driving license and is preventing me from returning to university to get my masters and PhD.
But there is hope…
I don't just mean the long term hope that the FPRF will find a cure, although that does keep me going sometimes. I mean a short term hope of enjoying life as much as possible despite the pain. I always try to arrange nice things in the midst of all the appointments. Sometimes I worry about missing out and having to cancel last minute but at least I have tried. This gives me something to aim for and a reason to keep going in my worst times. Recently I've been almost a party animal in fact despite the fact I can't drink alcohol due to my morphine. Trust me don't try it! On 21st June I attended my university's graduation ball - although I graduated last year (A struggle and massive boost in itself) many of my friends graduated a year later. Part of me wished I had been able to return to complete my masters but the bigger part of me just enjoyed going to the ball as a friend's 'plus one' and supporting all those friends who had achieved their degrees this year. I am so glad I did. The ball was at Blackpool Tower Ballroom, a Lancashire landmark that will be lighting up teal for TN on 7th October this year. I got to wear the most beautiful dress I had ever seen and felt like a fairytale princess for the night. Unfortunately a TN attack struck halfway through the night and I found a quiet alcove to wait it out before inevitably going unconscious… only to wake up to find my friends had moved the party to me. In fact the first thing I heard as I woke up was a friend yelling at her boyfriend 'Keep that wine away from Karla's dress!' My friends insisted on sitting in that alcove with me for over half an hour chatting and laughing and generally having a great time, despite my 'short decisive unintended naps' as I refer to them. In fact there were several Sleeping Beauty jokes going around and I now have a picture of me in a beautiful dress, unconscious and unintentionally doing my best impression of the fairy tale!
The TN attack eventually passed and the rest of the night went brilliantly. I got home and my jaw bled about 20 minutes after getting the ballgown off - thank goodness it waited! Yes I paid for the night the day afterwards (and maybe a few days after that if I'm being truthful) but I wouldn't have swapped the experience for the world - TN most definitely lost that night.
I had my birthday party the week afterwards and again my friends rallied around, catching me when I passed out, holding me up as I danced so I didn't need my crutches and generally supporting me (in more ways than one!) I have always coped with my condition by making a joke of it and see no reason to change. It may not work for everyone but it works for me. Am I guilty of putting a show on in public? Yes sometimes I admit I am. But now many friends have seen me at my worst, screaming in pain or spouting blood everywhere and they have stuck by me. So in a way this illness has shown me who my true friends are. And I can't thank them enough for it!
To stick with the fairytale theme one of my TN friends took a look at the photos from Graduation Ball and captioned them 'Beauty beats the Beast.' I'm not sure about the beauty part but the beast definitely lost!