Jesse is currently touring in Germany, but was kind enough to make time for an interview and answering some questions about his experience with Lyme Disease. It sidelined him for 2 years, but then he came back stronger than ever. His story is incredibly inspiring, and I'm so excited to let him share his story & music.
Without further adieu,
Jesse: Getting my diagnosis was a nightmare. I started not feeling well late in 2012, and after a few months I knew something was really wrong. My fatigue was completely overwhelming. I had a crawling sensation under my skin that never went away. I couldn't breathe (I later found out this was called air hunger), and my brain was clearly effected. My short term memory because really bad. I forgot lyrics to my own songs. I started going from doctor to doctor, and taking all of the normal blood tests. Of course, all of my tests came back negative. I was told I was totally healthy many times. I was sent to a psychiatrist, who diagnosed me with depression and told me I needed to wake up early and take long walks. Meanwhile, I could barely move.
Eventually, i started doing research online, and found a site that had a list of possible Lyme symptoms. It was the first time I found something that covered everything I was going through. I asked everyone I knew who had ever had Lyme, and found a doctor in New York that specialized in treating people that deal with chronic illness called The Morrison Health Center. I owe them my entire life.
In the end, it took me more than 9 months and 14 doctors before I got my diagnosis.
C: Wow, what a long journey to finally get some answers! When your learned you had Lyme disease, how did you feel? We're you hopeful, scared, relieved?
Jesse: I remember when I told my family, they were very relieved. But I knew what was going on in my body, and how bad it was. It was great getting rid of the unknown, but then the work of actually getting healthy again had to start.
C: I can certainly relate to those mixed feelings, and I'm sure anyone dealing with this illness can too. What was your experience like fighting for your health?
Jesse: My two years of illness were the most difficult of my entire life. It was so scary, not knowing if I was ever going to get better. Mentally, it was almost unbearable. I started wondering if I deserved it, if I was actually a terrible person. Most of the people in my life were supportive, but after a while, there was a limit to their empathy. After all, I lost 35 pounds. I "looked great", even though I was worried I was going to die. It was hard to maintain those relationships. It was hard to stay positive. It is a very isolating experience, to deal with a chronic illness that most people know nothing about.
People deal with this situation in their own way, but for me, the best thing to do was put everything on hold. I stopped writing music, touring, or sending e-mails. All of my energy was focused on recovery. I spent most days at the Morrison Center in New York getting treatment. I tried literally everything. Fortunately, after about 18 months, I tried something called The Garcia protocol, a combination of chelation and ozone treatment. Three months of that, and my physical symptoms were gone. It took another 18 months to recover emotionally.
C: That's certainly a long road you traveled full of ups & downs. Who was your support system? Did you find that those around you had a good understanding about this disease?
Jesse: Through my doctor's office, I met a group of people around my age who were also dealing with Lyme disease. I don't know if I would've gotten through the experience without them. To have people who completely understood my situation, where I didn't have to prove to them how bad it was, who just got it. Besides them, it was challenging for my friends and family to really appreciate what was happening.
C: Did you use your music as an outlet to cope?
Jesse: I did, up to a point. There was a long time where I couldn't pick up my guitar, or if I did, I could barely play. I had trouble focusing, mentally. But since I've been feeling better, music has been a big part of regaining my life back. It is such a huge part of who I am, and how I connect with people. Being able to perform again, or even just listen to music again, has been a huge joy. A lot of the new songs are about that experience. My new single, "This Is Why I Need You", was written as an acknowledgement to my girlfriend and other people close to me who really pulled me through the whole experience. It's been amazing, seeing the reaction people have had to the song. Something that was so personal and difficult for me inspired something that has really resonated.
C: As a fellow fighter of Lyme disease I know that this experience can give you a greater appreciation for things in life. Do you feel it gave you a new perspective on anything, and how so?
Jesse: It really really helps to focus on what matters. Being a musician can be very difficult, financially and emotionally. But my worst day as a musician is still better than any day I spent during my illness. I am so grateful for the people I met who helped me through it, I am so grateful for my doctors, who never gave up on me. To be able to wake up in the morning with a clear head, even to do something as simple as going for a walk. That wasn't possible for a long time. I try to enjoy it as much as I can. I also try to reach out to anyone that I find out has Lyme, and remind them that they're not crazy, and that getting better is possible.
C: Did this experience inspire any new music?
Jesse: Absolutely. I was always the type to write about the stuff that was going on in my life, so it's no coincidence that my next album is about dealing with difficult things. It's called "A Reply To Violence", and when people hear it, I want them to get that no matter what happens, they are not alone, and that it is going to get better. That is a message that I forgot for a long time, and I think it's important for people to hear.
C: Can you tell us what is coming up for you in this next chapter of your life?
Jesse: I'm really excited about the coming year. I'll be in Germany for a month to tour, I'm gonna put out my new EP (A Reply To Violence), and in November I'm planning to run the NYC Marathon and raise money for Lyme research.
C: Jesse, thank you so much for doing this interview and sharing about your personal journey. Your fight, and seeing how you are flourishing now post-Lyme has given me so much hope. Are there any final thoughts you would like to share?
Jesse: Yes, lastly, to anyone reading this: I'm so sorry you're dealing with Lyme. I know how terrible it can be. You are not a crazy person. Please take care of yourself.
To contact Jesse you can find him on his social platforms here:
Official Site
Soundcloud
Tumblr
-Christina