Recently I reached out to Kami Lingren of the blog Living Grace. Kami also has Lyme disease and writes a blog to cope with her illness and raise awareness. I asked Kami to contribute to a post of the Global Lyme Alliance blog called, What It's Like to Have an Illness No One Believes In.
Kami expressed an interest in a blog post I'd been working on for a while about making the changes your illness was designed to inspire. I got the idea from a quote by Caroline Myss:
"When an illness is part of your spiritual journey no medical intervention can heal you until your spirit has begun to make the changes that the illness was designed to inspire."
You can read the full post here:
How to Make Changes in Order to Heal
Writing this post was very healing and I was grateful to have an outlet to share this perspective.
What changes have you made in order to heal?
"Don't be afraid to give up the good to go for the great." - John D. Rockefeller
One reason people get tattoos is to commemorate an important experience. When I was struggling to get a diagnosis and at rock bottom, I promised myself I would get a tattoo when I finally found the answer. I wanted the tattoo to represent the fact that I never, ever gave up, even when it seemed like I might not get better.
As it turned out the diagnosis was only the beginning. Through the process I learned a lot about myself and felt my purpose shifting. A health professional I follow on Facebook posted this quote from Thich Nhat Hanh:
The phrase, "no mud, no lotus" rang true true for me. There are so many beautiful things that have grown out of this illness: I have found medical professionals that I trust, I have met tons of amazing people, both in person and online, I started my writing career, I started eating nutritious foods, I made meditation and yoga a priority, and I completely, re-framed my outlook on life. The biggest thing was it gave me the bravery to leave my job.
Oprah says when the universe wants to tell you something it starts with a whisper. My whisper started 10 years ago and kept getting louder and louder. Getting sick was the universe screaming at me, "You're going the wrong way." Without this illness I never would've found my way back to my true path.
So, one day I was scrolling through my Twitter feed, and I came upon a tweet about the Lyme Warrior campaign Ink to End Lyme. (You can read my interview with Lyme Warrior President and Founder Lauren Lovejoy here)
It was the excuse I was waiting for to get my next tattoo. On the Ink to End Lyme campaign page I found out there is a tattoo artist in Chicago who also has Lyme and was participating in the event.
I contacted Kyle Adani at Revolution Tattoo and asked if he would do my tattoo. He graciously accepted and designed a beautiful lotus flower tattoo.
Here he is at work. Doesn't hurt a bit:
And here is the finished product:
It was such a special experience to get a tattoo about my Lyme journey done by another Lyme warrior. We talked about our shared experience, as all Lyme patients tend to do when we meet, and it resulted in a very meaningful piece of art.
Tattoos aren't for everyone, but many Lyme patients feel compelled to document their experience. It's not my first and it won't be my last; it marks another chapter in this long and beautiful journey.
"The lotus flower blooms most beautifully from the deepest and thickest mud." - Buddhist Proverb
This interview is with Lauren Lovejoy, the President and Founder of the non-profit Lyme Warrior. You may have heard about one of their wonderful campaigns, such as, Kids Smile Boxes, or most recently, Ink to End Lyme. According to the Lyme Warrior website, this is their mission: Lyme Warrior is a 501(c)(3) nonprofit organization fighting to bring awareness and support to the sufferers of the silent, debilitating epidemic of Lyme Disease. Proceeds fund research, awareness campaigns, and impoverished Lyme Warriors. You can donate directly to Lyme Warrior or buy items from their online store. Lauren works tirelessly to empower other Lyme patients to raise awareness and make change. She truly lives up to the title of her organization.
What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis?
I have no idea where I got Lyme. One day I was driving on a long trip by myself and had my first anxiety attack. Within a month, I was so lightheaded I could not get out of bed and I started seeing doctor after doctor. It took me a year to get diagnosed when I ended up in an LLMD's office by accident. There I was diagnosed and started learning all about the disease that had changed my life.
You are the President and Founder of Lyme Warrior. Tell us a little about the organization:
Lyme Warrior was created out of my frustration at being home bound for years. After I finally got diagnosed and found that my story was common, I felt the extreme need to raise awareness so others wouldn't have to go through what I did. I reached out to others who wanted to change this disease and together we started creating products and projects we hoped would bring awareness while raising funding for Lyme research. We are now a small team of volunteers still in our first year. Our focus is to fund different types of research while raising awareness. We became an official nonprofit just a few weeks ago, but have big plans and ideas for how to make things change.
Lyme Warrior created the Ink to End Lyme campaign. Can you tell us about it. What is it? Where did the idea come from? How did you become connected with tattoo artists across the country?
Tattoos have been an interest of mine for a long time. I had work done by many amazing artists some of whom I became friends with over the years. I reached out to a few to see if they would be interested in donating a day of tattooing to help fund research for Lyme Disease and they of course said they would love to help. With their help, many other shops wanted to help as well. We asked each shop to do anything they wanted for a day to raise awareness. Some shops offered flash tattoos, some donated gift certificates, and some just donated to the cause. With such big names helping, it has been getting a lot of attention in the tattoo world.
How is the campaign going so far? Do you plan to make it an annual event?
Because of the success, we will definitely be having a second year. With big name artists like Kelly Doty, Timmy B, Jessie Smith, and Geary Morrill we have attracted a lot of attention in the tattoo world and hope to do even more next year.
What do you want people to know about Lyme disease?
I just want people to be educated about what Lyme really is - the extent to how disabling and deadly it can be, the issues with correct testing, and the adversity patients have to go through just to get a correct diagnosis. If people knew what Lyme disease was really like the funding and change would come naturally. Like so many things, it's ignorance that creates the challenge.
Do you have any advice for the newly diagnosed?
For those newly diagnosed, I highly recommend finding support. If that's friends that will stick around, support groups, or a more stable living situation. Find the stability that will give you strength through the journey.
Do you have a role model in the Lyme community?
Many. I admire anyone battling Lyme who continues to get up every day and keep trying.
Please share a mantra or quote that inspires you:
"Vulnerability is the birthplace of innovation, creativity and change" - Brene Brown
Follow Lyme Warrior:
I'm always looking for new stories and perspectives on Lyme disease, healing, and wellness. If you are interested in being featured on The Lyme Interview, head on over to my Connect page.
"When it comes to what really matters - what makes us laugh and cry, grieve and yearn, delight and rejoice - we share the same heart space. We just fill it with different things." - Oprah Winfrey
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.