Living with Lyme: Walking Meditation

Walking barefoot in the quiet of a Spring day.

Walking barefoot in the quiet of a Spring day.

Last night I had to explain to someone close to me how my body works. How, after having had Lyme Disease off and on for almost twenty years, it’s harder to do simple things that I can no longer afford to ignore. I’m not debilitated. Not by any means. But sometimes walking up stairs makes me scream inside. Sometimes holding onto a conversation takes an obscene amount of concentration. Sometimes I realize that no one around me is aware that I’m loaded with small but consistent amounts of pain medication to make it through the job and that I may have blacked out when no one was around only hours before. When I plan any work or social events on back-to-back days, I have to plan precious hours between them or know that it’s going to take a few days to catch up afterwards. I count my blessings – this isn’t about a sob story or a cry for a solution. It’s about the little things that keep it all in check.

Today my dearest friend, whom I will forevermore call Muffin on here, told me I’d made a brave decision in leaving the well-paid cooking job that I loved but that completely depleted my limited stores of energy. Since that time my days have been a weird crucible of covering events, interviewing chefs, working on a book pitch for me and Brent, working on a chef’s book pitch, and keeping my family business in check. I make up for the lost income by cooking at photo shoots or stepping in at my prior job – both which require those small but consistent doses of prescribed pain killers and muscle relaxers. Some days, like yesterday, the consistent amount of work it takes to prevent a flare up feels like too much. I don’t look sick, and for that I am thankful. And the work I do in my private time is enough to ensure that most people don’t see me at a weakened state. Again, I count myself lucky for that.

But it takes work, and being completely aware of a restorative moment.

My Lil Sis, who drove all the way up from North Carolina to help me at a charity event. I couldn't have done it without her.

My Lil Sis, who drove all the way up from North Carolina to help me at a charity event. I couldn’t have done it without her.

Sometimes it takes a quiet moment with my sister on the Hudson River before we go bake 200 mini scones for a charity event.

The first buds in front of my apartment building in NYC.

The first buds in front of my apartment building in NYC.

Sometimes it takes stopping for a few minutes before I walk in my front door, to recognize the beauty that is something awakening from a long winter’s sleep.

Mitra at our local park.

Mitra at our local park.

Sometimes it takes a Sunday morning with Mitra, a cup of coffee and music in my headphones.

The three kinds of gluten-free scones I made for a benefit for C-CAP.

The three kinds of gluten-free scones I made for a benefit for C-CAP.

Sometimes it takes hauling baking equipment down to a commercial space at 9:30 am and baking my face off to be a part of something that, in a small way, gives back.

But, most importantly, it’s the sucking in of air that saves me.

My favorite corner of my childhood property, where I like to walk barefoot and listen to the woodland noises.

My favorite corner of my childhood property, where I like to walk barefoot and listen to the woodland noises.

I’ve personally found that walking meditations are the best way to get me back to where I need to be. They’re easiest done in my childhood home in Connecticut, where I can explore the budding trees, take note of the first blooming flowers, and walk barefoot on the moss that blankets my favorite corner of the property. In these times I leave my phone, my to-do list, the frustration of a published piece poorly received, a draft that isn’t sitting right or a pitch that’s gone unanswered. I let go of my financial fears, my disappointment that my body can’t keep up with the necessities of modern city living, and the frustration that if my shit isn’t together my brain doesn’t formulate words and sentences in ways that I need them to – now – for my work.

Last week I went to a Yoga and Meditation for Chronic Pain workshop. And it was fine. I did learn one new sequence of meditations that was new and relevant to me. But – fortunately – the premise was old hat to me. I’ve been meditating for a long while now. I know the affects of stress on my body, the consequences if I choose to ignore them and the benefits of giving them their time. I try to be present as much as possible. But it’s a growing practice. Things that work well today might not tomorrow, or next week, or next year, when I’m hit with a new set of challenges.

So, I ask you, what works for you? What – besides medications and physical concentrations – helps you mentally, spiritually and emotionally stay balanced? What do you repeat to yourself to help remind you of what you know to be true about your world, your body, your life? What keeps you living healthfully and wholly, with a chronic illness. I hope you share, because chances are at some point I’ll feel low and desperate and need something new to try.

Cheers to love and health,

- Jacqueline

Another moment of growth and restoration in NYC.

Another moment of growth and restoration in NYC.

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6 Comments

  1. Jacqueline- Loving this- as you know I get my rest and meditation mostly from the beach- but then- there is that special walk in the woods through the center that I also enjoy everyone needs their “quiet” spot

  2. Anonymous says:

    My secret garden …. I am most at peace when sitting on my patio listening to the birds sing, watching the squirrels run through their imaginary freeways high in the trees, laughing at my dogs do silly things, just absorbing the beauty of nature that I can find in my own little corner of the world ….

  3. susieq777 says:

    Hello Jacqueline, nice to meet you.

    I struggle with this question of what do I do for balance because I know what I need to do, but depending on my stress levels I can’t always get there. I’ve had 14 years of CFS/pyroluria and when my adrenal function dips below a certain level I find it really hard to do those things I need to – walking on grass barefoot and playing with clay and drawing, meditation and yoga. It’s like the fight or flight takes over and I fall into a fear filled wasteland where there’s not enough time to do those things because a) I can’t reach them anyway and b) who can be wasting their time with such things when I feel so insecure and the financial roof’s about to cave in? I have begun hauling myself out of such a space again; I’m not sure if you experience this place in your own journey or not.

    I very admire much your creative endeavours you’ve been able to carve out as career paths for yourself . As a 42 YO I think my best bet is to find work I enjoy and to launch out on my own. I’m considering putting together a short course on uncovering creativity and its a new area for me so I will need to do some voluntary work etx to get the right experience. Seeing people like you who are navigating their way through chronic illness is very encouraging to me :)

    • Hi Sue,

      I’m so thankful you reached out and am loving your blog as well – kismet!

      I have experienced that in my journey. The financial roof often feels as if it’s about to cave in, and the only time it didn’t my body was suffering the consequence of taking on a job far beyond my physical capacity. Lately a few symptoms have worsened and meditating became harder, because it started taking me to a darker place rather than one of peace. A good friend of mine gave me something to work on that helped – I’m going to write about it this week. All I can really say for now until I’ve thought more through it is that illnesses like ours come with a lot of insecurity and fear. And sometimes instead of trying to escape our bodies maybe we should be really present in them, pain and all. I used to (and am going to right now as a reminder to myself) take stock of what “I have”, like in that song from the musical Hair. “I have my knees, I have my fingers, I have my heart, I have my blood, I have my spine…” For some reason just recognizing what I have, even the parts that hurt, at least gives me ownership of them, and gives them a little less power over me. Just a thought.

      Hug…

  4. Pingback: Living With Lyme: Staying In My Body, and Advice from a Petite Pilates Princess | The Dusty Baker

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