By Julie Gagnon Prior
Growing up, I always wanted to be a professional clown. I was, and still am, in love with the idea of hiding behind a face full of makeup, silly clothes and acting goofy for the sole purpose of making others laugh and forget about their worries: If I were a clown, then I could make the world a better place - only people wouldn’t know that it was me underneath the costume.
When making the VT Pinup Girl Calendar 2020, I was adamant that my name not appear anywhere within the project. Wisely, however, the printer told me in no uncertain terms that not only did I need to include my name, but I also had to tell some of my personal story.
In hindsight, he was right. With a name attached, I had a marketing tool that wouldn’t have been there otherwise.
With a name in print, I am able to be a real live person. Able to be part of newspaper and tv interviews. Able to speak to others and share hugs with my real-life arms. As uncomfortable as it is being on a soap box, I have had to put on my big-girl pants and suck it up. It’s like my Dad said a few months ago. He was referring to the outfit that I told him I was going to wear on a tv interview. He said, “Nope. You can’t do that. You are being interviewed because you are a spokesperson for the Lyme community. It’s not about ‘You’. It’s about them. Make sure to dress and conduct yourself with all of this in mind.”
To date we have raised $7,000. Every penny, after taxes, will be presented to vtlyme.org, a non-profit organization whose mission is “providing effective prevention education, equitable information, and support for Vermonters affected by Lyme and other tick-borne diseases.”
You may wonder why I was driven to do such a project. To make an extremely long story short, I suffer from “Untreated Chronic Lyme Disease”. November 1 of 2009 I squeezed an engorged tick off my hairline. Doing exactly what you shouldn’t do, I inadvertently squeezed the poison into my body. Although I became ill, my primary care physician wouldn’t treat me because I did not get a bullseye rash. I trusted him, and, despite continuing to become more ill, I chocked it up to the flu.
After many years of being diagnosed with “Chronic Fatigue Syndrome,” a visit to a Lyme Specialist resulted in the Lyme diagnosis, along with co-infections. I would like to stress that my case is relatively unique in its severity due to the fact that I wasn’t treated in a timely manner. When treated properly, Lyme can be rough yet manageable.
I created the calendar to spread awareness to prevent others from the same fate. Nicely stated, Untreated Chronic Lyme sucks manure.
About three years ago, I Googled “Vermont Lyme” and only found one site that provided support and education for the afflicted and their families. That site was vtlyme.org, and that is how they became the decisive recipients of any money I made.
Sunday, Nov. 10, I was the guest speaker at the vtlyme.org support group. Rebecca Zelis, the organization’s founder attended and we had an opportunity to talk one on one.
I knew that Rebecca’s experience parenting a child with neuroborreliosis (neurological Lyme disease) led to creating the website. But I learned more of her story and really how fate was running on steroids to bring us together at the perfect time in both of our lives.
Here’s some of her story that she wrote down for me to share.
“VTLyme.org was started in 2016 and over the next couple of years my husband, Mark, and I worked to build it into a resource for Vermonters about Lyme disease and tickborne diseases. As we built VTlyme.org and we heard from Vermonters through the website’s contact page it was clear this was a bigger job that I understood at the beginning.
During this time, we would get emails about people who were told by their doctors that if they didn’t have a bulls eye rash they didn’t have Lyme disease. Others had a bulls-eye rash and fever, but since their blood test came back negative their doctor told them they didn’t have Lyme disease (according to the CDC, a blood test will most likely be negative for several weeks early in the disease since the body has not yet developed enough antibodies to be detected in the test.) Like my son, Vermonters who have delayed diagnosis are more likely to have systemic and long-term problems so these stories were disturbing, but also helped Mark and I realize the importance of continuing our work.
Along with our commitment came the cumulative effect of years of stress and financial difficulties. I was reaching a breaking point and honestly considered ending my work on VTLyme.org. Julie, this was about the time you first contacted me. I just had reached a point where my emotional and physical energy and resources were absolutely GONE! Luke had relapsed and was quite sick again, we moved several times, and we were barely making ends meet - I was totally overwhelmed.
A comical series of accidents led me to push forward a bit more and create a board in 2018. These brilliant and committed people on the new board had skills and energy I did not. They also gave me support and recognition for the quality of work I had done alone up until that point - which helped me regroup and reenergize. Through the work of this board, VTLyme.org became a 501c3 non-profit! Vermont often leads the US in incidence of Lyme disease and VTLyme.org is the only organization addressing the impact of Lyme and TBDs on Vermonters.
So, Julie, that brings us up to today. More than anything I am grateful my son is doing well. We are regrouping and figuring out how to move forward from the past decade. Maybe you didn’t realize what an impact your support has had?? Please know I am so grateful - and I truly believe we will prevent what happened to us from happening to other Vermonters.”
So, now here we go, with great discomfort…
I am going to make a shameless plug and ask for your help. Here are three ways that you could help.
1. Purchase a calendar or two (they make great Christmas gifts).
2. Make a monetary donation that I can add to the $7,000 already raised.
3. The most important - word of mouth is huge!!!!
When 2019 ends, It’d be awesome to make a big cardboard check, like they do on tv, for the amount of $10,000 to present to Vtlyme.org.
What do you think? Can you help with this last push before the year’s end?
By Julie Gagnon Prior
Some folks call me a “pack-rat.” I personally prefer the term “sentimentalist.” I tend to hold on to items that have meaning to me. Most often this doesn’t create an issue because the items are small and fit on a dresser or a shelf. However, this isn’t the case with my 2003 Honda Odyssey.
At the time I was looking for a vehicle, I had two small children, and their safety was the most important factor. Because I wasn’t rolling in money, quality, maintenance, longevity and other attributes were critical. To research, I purchased three publications that reviewed/rated used vehicles. I created an extensive Excel spreadsheet that had columns for each criterion, and values (from the resources) were entered accordingly. Using that data and a little bit of math, I determined that the highest scoring van was the 2003 Honda Odyssey.
When I purchased the van, it had 40,000 miles on it. It now has almost 270,000 miles and is very tired and just wants to rest.
It really makes me sad though. This van has been such a huge part of so much of so many lives. Can’t I keep it forever?
She carried my children to daycare, doctor appointments, school, and family events.
She was the one who patiently endured my kids learning to drive.
As they got older, I am sure she was squealing with enjoyment when they learned how to do donuts (backwards because of the front wheel drive), practice sliding in snowy parking lots and going places not meant for a van — while we pretended she was a Jeep.
The seats came out easily, and we learned just how much you could fit in a van. Once when transporting a dirt bike in the van, the bike tipped over. I hadn’t shut off the fuel, so the carpet became soaked and had to be removed. She never complained about that.
She carried several whitewater kayaks and stinky gear back and forth from Massachusetts to Ottawa. Put the seats back in, and she’d carry friends to Montreal or the Penobscot river in Maine. Most recently she carries a plethora of tools, a sleeping bag and pillows, and lots of doggies around the Islands.
On the dash, it says 270,000 miles. But that number is so minuscule in the life mileage that she has traveled for me, my family and friends.
She actually... yes my van, is a very dear friend.
Last week I began facing the fact that I need to find a stronger, younger friend to carry my tools and all. When I heard about a decent pickup truck in Alburgh for $1,200, I made plans to go the next day to check it out.
As I drove to the location, it occurred to me that the area was familiar. I was particularly tickled as I drove by a friend’s marina shop, a friend I hadn’t seen for a couple years. Planning to stop by on my way back through, I continued down the road but wasn’t seeing the pickup. I was told it was parked by the road with a “for sale” sign on it. Eventually I stopped at a house where I saw some men tinkering in a garage. I asked them about the pickup, and they told me that it belonged to their neighbor across the road. Looking closer, I saw the pickup was parked by the house and not by the road. Still planning to go knock on the door to inquire, I asked the guys if they knew Roger, the owner of the marina. They laughed as they said yes and then shared that the pickup truck was his daughter-in-law’s. I had to chuckle as I marveled at the fate of the situation.
It turns out the truck had sold the night before. I was a bit bummed, but it paled in comparison to the excitement of possibly seeing Roger. When I pulled in by his shop, he came out and couldn’t quite figure out who I was. After I gave him a couple of hints, he figured it out and laughing said, “I didn’t recognize you. I have only seen you in dirty work clothes and you are dressed so nice!”
He also said that it’s just coincidence that he was there. He is hardly ever at the shop. With that, he asked me to come in, sit down and talk.
Wow, he blew my mind! I had only ever talked with him while I was working and he is really Carl’s friend. I’m a tag-a-long friend. Roger was extremely interesting and insightful, and the conversation just fueled my interest in this older, hard-working, Frenchman.
Explaining to him that I submit pieces to The Islander, I asked him if I could write down some of what he was saying. He was happy to oblige and quite proud (rightfully so) of passing on his thoughts.
I feel the best way to share his words of wisdom is through quotes that I pulled out of the visit.
“A day with no challenge is a bad day. Now why? Because challenges make you better.”
“There is no such thing as ‘can’t.’ ‘Can’t’ is an easy way out.”
“I wish they had a semester in school for young children to learn the meaning of respect. Some kids are addicted to drugs because they loose respect for themselves and fall down. Respecting yourself comes first. Then you can respect others.”
“When I go places, I smile at people. I say hello. I start talking and then they are happy. I start talking, otherwise nothing happens.”
“I was talking to a man and asked him, ‘how’s retirement?’ He answered, ‘It’s the pits.’ People need to keep busy. People need to have purpose.”
Just a small sampling of Roger’s comments. I wish I could go back today and just listen and learn more!
When it was time for me to leave, we said our goodbyes and I hopped in the van. On the drive home I marveled about the coincidences within the last hour. My van, which has taken so many on so many journeys… The same van that I am dreading saying goodbye to…
She has so much class and character that even when she was bringing me to a check out a possible replacement, she brought me to yet another heartwarming, random encounter and experience.
Nope, she isn’t making it any easier to let her go.
Maybe I can keep her just a little longer….
Julie Gagnon Prior
Julie Gagnon Prior resides in Grand Isle with her partner Carl and their 5 dogs. Prior has been battling Lyme Disease for several years, which she