4 million, that’s the number of Canadians that say they or someone they know has been afflicted with Lyme Disease. A few months ago Ottawa musician Tara Shannon became part of that statistic when she was diagnosed with the bacterial infection.
Tara Shannon – provided photo
Her first question was: what’s Lyme Disease?
As she started to come to terms with some of the changes she would have to make in her daily life and music career, she soon discovered that she was far from alone in not having knowledge of the illness. She’d discover that 30% of Canadians have never even heard of Lyme.
With her Butterfly Child project and work with Big Brothers and Big Sisters, Shannon has leant her voice in support of local and national charitable campaigns throughout her career. Hoping to shrink that 30% down substantially, she has now aligned herself with LymeHope, a not-for-profit organization dedicated to education and outreach on the subject of Lyme and related diseases in Canada.
“I am looking forward to working with LymeHope, an incredible organization that works to raise awareness on this anonymous disease” says Tara Shannon. “I am a strong believer in using my platform to support causes and organizations that are close to my heart and I am excited to give my voice to LymeHope.”
Jennifer Kravis and Sue Faber, also known as the Lyme Moms, founded LymeHope last year to provide education, encouragement, hope and support to Canadian families dealing with the effects of Lyme and related diseases. After being diagnosed themselves, the two would learn firsthand that there was virtually zero recognition or treatment here at home for the late stage and chronic forms of these illnesses. Getting the help they needed meant leaving the country. Making matters worse, both Kravis and Faber also have children with the disease.
“We think every Canadian needs to be aware of the growing risk of Tick-borne diseases in Canada and understand the desperate lack of accurate diagnostic tests, experienced physicians educated in making clinical diagnosis, treatment options, disseminated chronic forms as well as alternate modes of transmission” says Jennifer Kravis.
You can add your voice to the 59,000 people from every Province & Territory in Canada who have signed the Lyme Petition created by Jennifer & Sue here: http://bit.ly/2lfBuNL.
As for Shannon, she is set to tour Canada this summer in support of the cause through her music as well as sharing her own personal battles with the disease. Her new single, a remix of a song from her Unfinished album, is aptly titled. It’s called “Someone Who Understands” and now includes additional lyrics and vocals by Cody Coyote. The song is one that reminds listeners that, in those times of doubt, when things may seem at their bleakest, they are not alone.
Tara shared more with me about the collaboration with Coyote, what has changed since her diagnosis and her work with LymeHope.
Andre Gagne: Before the diagnosis, what were some of the signs you were seeing that told you you should go get checked out?
Tara Shannon: It started with signs of a kidney infection which I foolishly ignored thinking it would resolve itself. I’ve had many kidney infections over the years, so I was not very alarmed. I hate going to the doctor’s office, so I kept busy with work and hoped it would go away. Unfortunately, it didn’t go away and landed me in the hospital and then in my bed for two months.
When were you officially diagnosed?
Lyme Disease is a clinical diagnosis meaning it is mainly concluded by a knowledgeable doctor assessing signs and symptoms. There is no conclusive test for it. I took the tests which tell you if your body carries the antibodies for the bacteria that causes Lyme. I was first diagnosed here in Ottawa, then I went to Vancouver to see a specialist who further confirmed the diagnosis and put together a treatment protocol for me.
What were your initial reactions in the days after receiving your diagnosis?
Definitely mixed emotions. I was so grateful to finally know what I was dealing with so we could treat it and hopefully get my life back, but also sadness and grief that this was a part of my new reality.
What do you feel have been some of the biggest changes you have had to make to your lifestyle?
I have had to start taking my health very seriously. Be much more mindful of what I eat, what my triggers are and the amount of rest I actually need. I’ve really focused on that mind and body connection. I’m a very headstrong and determined person, in the past I would get an idea for something and I would forge ahead to get it done. Now, I check in with my body and make sure it is a task that I can handle. It’s a very different approach for me.
How do you feel the disease will affect you moving forward specifically with your music career?
I am more careful about which performances I am going to be doing and when. I will be focusing a lot on building my audience in ways that allow flexibility. One of the best things about recording music is that it can be done in your pajamas! Public appearances are very different and take a lot of energy. I am going to be much more mindful about how much of that I do. It won’t stop me or slow me down, but I am going to be working in a smarter and more balanced way.
How have you found the support from your loved ones and fellow musicians?
The support has been incredible! I had never heard of Lyme Disease but as soon as I started talking about it, I found out I knew lots of people with it or affected by it. It has affected so many Canadians. My family has been amazing. It was really hard for my family to see me sick for so long. I am so grateful for the support from my kids, husband and music team. We all just kinda’ went “okay, how does the Universe want us to use this?” At first I wasn’t comfortable with going public about it because I didn’t want to become known for Lyme disease. Once I started sharing my story, the feedback that I received from others who had been affected by Lyme Disease has been overwhelming and has given me a great sense of purpose. I now feel a deep sense of purpose when it comes to educating and advocating for those who have been affected by Lyme Disease.
What are some of the things you want the general public to be more aware of when it comes to Lyme?
First and foremost, the information coming from Public Health here in Canada is not accurate. The information being sent to the public through government channels needs critical updating based on the science. So you will not get the support you need from your regular doctor unless they are Lyme literate. You will have to push. You will feel overwhelmed and alone. But you are not alone. Reach out to organizations that are Lyme literate. Get the information you need. LymeHope.ca is a great place to start. CanLyme.com is also excellent.
Can you tell me more about LymeHope and your work with them?
I started doing research on Lyme to understand what was making me sick. The thing that I kept thinking of while I was bedridden was how lucky I was that I had the ‘luxury’ of being sick. My children are older, my bills are paid, I have help when I need it, I was able to go and see a specialist in Vancouver, but there are a lot of people out there who can’t do those things. I reached out to Jennifer and Sue, the founder of LymeHope, to see if they were open to some of my ideas. They are such wonderful women who have incredible stories about their fight with Lyme. I admire them very much and am looking forward to the projects we will be doing together.
You will be releasing a new single on May 25 with Cody Coyote. Can you tell me the story behind “Someone Who Understands” and what it means to you?
Yes! I am very excited about this collaboration. Cody is an incredible artist and human being. I am so happy he said yes to working with me on this! It’s a remix of a song on my Unfinished album written by my producer and friend Hayley McLean. When I first met Cody, I had the idea of this remix but I had never worked with a hip hop artist before. I could hear a version of this in my head that I thought would work and thankfully he said yes to working with me! We found the perfect producer for the remix, Michael Steinslien, to bring it to life. We are both very happy with how it turned out artistically, but also the message of the song and Cody’s spoken word have deep meaning for both of us.
It really is a unique partnership with your music styles being so different. What was it like working with Cody?
He is absolutely incredible. What an amazing talent! As I got to know him, I realized we have a lot in common in terms of our music. We both feel music as a healing energy that connects us and removes barriers. I have enjoyed every minute of working with him and I am deeply grateful to him for making me ‘cool’ (at least in my children’s eyes!).
When you reflect today, what do you feel most fortunate for having in your life?
Too much to list! I am so grateful for life itself. My connection to Spirit/Universe/God, or whatever word makes sense for you, is bigger than ourselves. I am most grateful for the lessons learned which have taught me compassion and empathy and shown me the power of kindness.
Catch Tara perform across the region this summer starting on June 14 when you can see her live at Batstone’s Northern Ramble in Renfrew, then on July 8 catch Tara on the City Stage at RBC Bluesfest and then this fall Tara will take to the stage at the prestigious National Arts Centre in Ottawa on October 25. For more on Tara and her music visit www.tarashannonmusic.com
