Meditating with Lyme Disease

I’ve had Lyme Disease for ten years. As is often the case, learning to live with a seemingly insurmountable challenge has taught me a lot. Someone recently emailed me, asking about my experience and how meditation has helped me cope with my chronic Lyme disease. Below is my response. I’m sharing my response with the wider Brightmind community in hopes that it may help others suffering from Lyme, other forms of chronic disease, or any other challenge.

Hi Matt,

Prior to my struggle with chronic Lyme, I was a serious musician and athlete. But Lyme caused chronic musculoskeletal pain all over my body, which meant that I couldn’t play music or sports anymore. These pursuits defined my personality, and losing them sent me into a four-year depression.

After practicing meditation every day for about a year, I had a very impactful meditation session. My body filled with energy and at that moment, I realized I had my life back. You see, what I loved about music and sports was that they allowed me to drop into a state of high concentration. Music and sports both come with a certain peak experience of energy. And I had just found another way to get to that place. I thought I needed music and sport to feel alive, and I wouldn’t be whole until I got back to those activities. But then I clearly saw another way to get there: through meditation. That discovery—that meditation could be used as an effective kind of coping mechanism for dealing with my chronic Lyme—was deeply healing.

Whenever I’m frustrated with my experience living with Lyme, I know I can always meditate. Meditation allows me to access happiness independent of conditions. This is what meditation is all about, and it’s absolutely the best thing imaginable for people like us, who suffer from difficult conditions. It’s life-changing — in fact, it actually saved my life. That’s because for a brief time, before I learned more about meditation, I had semi-serious suicidal thoughts.

I would encourage you to explore meditation as a way to mitigate the physical and emotional distress that comes with living with chronic Lyme disease. As a time-tested method to achieve and maintain happiness independent of conditions, meditation can allow for a feeling of assurance and serenity with your body’s condition to seep into every part of your mind and body. Meditation isn’t always a quick fix, but it makes up for that by being a deep fix. You may not sense this shift for a long time. You may not sense it until you go through an incredible amount of struggle. But it’s there, it’s real, and it can be life-changing.

In regards to Lyme giving you brain fog and fatigue, and that making it difficult to practice: I don’t have experience with these symptoms, so I don’t have any clear answers. Here’s what I would say, though, if you are considering meditation as a way to cope with your chronic Lyme: start small. When I first started meditating more seriously, I just did five minutes each day. Think about meditation like any other skill, like learning the piano. Would you start practicing for an hour a day when you first started taking piano lessons? Maybe if you were really into it, but probably not. As your skills build, your appetite for practice will as well. If you let your skills and your appetite grow together, motivation will be less of a problem. It’s a simple feedback loop: your mind and body will begin to want to practice meditation, because they know it delivers happiness independent of conditions, which is pretty freaking sweet.

Also, my teacher Shinzen Young, who’s a 70-year old master, still has resistance to practice. So it never goes away. It’s normal. Don’t let its existence shut you down. Just get used to getting over it, and sitting down. If you can do that, then meditation can be extremely helpful.

The experience that I mentioned above — when I realized I could access concentration, not just through music and sports, but also with meditation — was also the moment when it became clear that I wanted to join a monastery. If meditation allowed me to access what I missed most in life and provided me with some sort of solace to my chronic Lyme, then I wanted to dedicate my life to the practice. That would re-infuse my life with meaning.

I trained for a year and a half at the Monastic Academy in Vermont. (I highly recommend the Monastic Academy. The training there is tough but excellent). When I was there, I saw, first hand, how meditation can be used for a variety of therapeutic uses outside of my own disease. During my time at the monastery, I trained with a lady named Anna. She had a bike accident when she was 18 years old: she hit her head and ended up with a traumatic brain injury. The entire left side of her body is now limp. She also lost substantial cognitive capacity, and the doctors told her that she needs far more sleep than most people. Therefore, the five hours of sleep we got each night at the monastery was really hard on her. But the teacher held her to the same standard as the rest of us, and she stayed there for more than three years.

While she was certainly still tired, her relationship to her sleepiness completely transformed. Even though her cognitive capacity was limited, the meditation practices still worked. I’ll never forget what she said one night during the very first intensive week-long retreat we did at the monastery. She said something like “My life has been ^^%@!$#$@)(&!!!!!!)(*%$@#JW@ and meditation has finally given me [out breath]”.

So whether you have a traumatic brain injury, or Lyme-induced fatigue and brain fog, these practices can work. The instructions remain exactly the same whether you’re using this practice as a way to cope with chronic Lyme or to gain clarity in some other aspect in your life. And this makes sense. If meditation is about finding happiness independent of conditions, then conditions are irrelevant. The fact that your brain is injured, or that you have a horrific bacteria infection, has no importance in this domain. Meditation is about seeing beyond your mind and body, towards something that is much more reliable. Therefore, the objective conditions of your mind and body do not limit your potential.

In fact, the skillful thought of bad circumstances can increase your potential. When I complained about the body pain associated with my chronic Lyme to Soryu Forall, the teacher at the monastery, he said “You’re lucky; you have a constant reminder to practice. Most of us don’t have that. Let it remind you to pay attention to what’s important and reliable in your life.”

Because of meditation, I was able to turn my Lyme disease from a curse into a blessing. It wasn’t easy, but it happened. Think of all of the negativity that you’re experiencing. Imagine if that energy was polarized. Imagine if it was metabolized into positivity. That’s what meditation holds in store for you. Pain, when greeted with mindfulness, turns into a purifying massage. That’s what makes meditation work.

There are many ways to practice meditation. Something that really helped me get into meditation was having options of how to practice. I highly recommend the new meditation app Brightmind. It introduces you to more meditation techniques than any other app. It also presents meditation in a very clear way, so you really start to understand what this stuff is all about, the different techniques, how they relate, when to do what, etc. I co-founded Brightmind, and am really proud of it.

I hope this is helpful. I’ll leave you with my favorite mantra, which helped me get through all sorts of difficult circumstances: “I love and support myself.”

You got this,
Toby