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Fear and Gratitude: Giving Thanks

They say you never see it coming… that one day, you’re walking around living your life normally, and the next day, boom, everything changes. For me, it came one evening last spring, when I scratched my neck and found an engorged deer tick on it. I figured it wouldn’t be any big deal, but that I’d go to the doctor and get it checked out just to be sure. Lyme disease is no big deal, right?

I spent the next fifteen months on antibiotics.

Fifteen months of riding a downward slide where nobody can tell you where the ride stops or whether you walk away or get carried out in a coffin at the end. A year and a half, now, of trying different doctors, of being told that Lyme disease doesn’t exist, of being called a psych case, of trying different antibiotics and hoping we’d find one that wouldn’t kill me with side effects. Another deer tick, this spring, which restarted my infection.

Eighteen months of research, now, of learning to understand some biochemistry so I could decipher what the treatment protocols were saying, of discovering the bitter political controversies within the medical community, and of praying for someone who might help. This will be familiar to anybody who’s gone through serious illness–the feeling that you’ve stepped onto an elevator that’s in freefall, with no way off.

I knew Lyme (and Bartonella, a coinfection that I also got) could make you pretty tired. I didn’t know it could make it impossible to stay awake for more than 30 minutes at a time, or that it would disable the vision in one eye, or that it would paralyze half of my face, or that I’d suddenly forget the names of people I’d known for years. I never saw it coming that it could do all sorts of damage that might be permanent… and that the only way to find out whether it’ll be permanent is to keep living until it goes away. I didn’t expect that sometimes I would wake up and my right shoulder wouldn’t move—that, no matter how hard I tried, I wouldn’t be able to move that joint—or that the disability could shift to different joints in a matter of minutes.

All those things eventually became normal. Humans are remarkably good at adapting to adversity, and I’ve been surprised to find that I can deal with that stuff pretty well. I can say, maybe with less grace than I’d like, “I’m sorry, but I’m having a horrible Lyme day, and I can’t do that walk we talked about—could we sit and have coffee instead?”. I can find ways to avoid stairs when my body can’t handle them, I can find new hobbies when mountaineering becomes inaccessible, I can make sure that I never go on stage without a music stand because my memory has grown unreliable. I take a bunch of supportive medications, and I probably always will, but I’ve learned to deal with that pretty well too. I can do this.

Nobody prepared me for the fear.

I had no idea how much mental discipline it takes to survive diseases like Lyme. But I’ve learned, and that’s what I’d like to talk about today.

I don’t remember what it’s like to walk outside and not be aware of the risk of deer ticks. I can’t sit on the ground without constantly checking for ticks that might be crawling on me, and I can’t pet my cat without checking her for ticks, because I’m flatly terrified of getting bitten and starting the downward spiral all over again. I don’t remember any other way but this.

I learned how the bacteria that cause Lyme can basically turn off your immune system, leaving you undefended against everything that’s out there, not just Lyme. They say it’s really important to have good hand sanitation when you’re a Lyme patient because you’re basically walking around in the world without a functioning immune system. So I wash my hands a lot.

My allergies have all gotten worse since I’ve had Lyme, and the asthma. Nobody’s had a good explanation for this, but it seems to be pretty common among Lyme sufferers. So now I live in fear of being near people wearing perfumes or colognes, because the whiff of perfume from someone walking past can leave me on the floor gasping for air. I used to hug people a lot, but the risk of getting perfume on me means it’s a gamble I can’t afford anymore.

And then there’s the constant fear of slipping backwards in treatment, of relapsing, of needing to be hospitalized, of needing 24/7 intravenous antibiotics, of side effects, of coinfections, of needing to fight with insurance companies to have the treatment covered… it comes with a hefty dose of fear, every day, without remission.

I could go on, but you probably get the picture. I earn my living at a crisis hotline where I talk to all kinds of folks, and I’ve heard similar stories from people dealing with cancer, fibromyalgia, lupus, Parkinson’s, chronic fatigue, and a host of other diseases. It’s all the same story.

So where does gratitude come into it?

It seems as though surviving these diseases brings a common theme: you learn to be grateful for good things when they come, because they don’t come as easily anymore.

There’s a lot of bad stuff that makes up the background radiation of life with serious disease, but after a while, most of us learn to accept that that’s the “new normal”. Maybe not with grace, maybe not always with success, but we learn to get through it. (Sadly, this often involves hiding the bad stuff from people we love because we don’t want to bug them with it, but that’s another story–and that’s part of why support groups matter.)

The thing is, there’s lots of good stuff to be appreciated too. I don’t think I noticed it as much before I got sick because I was pretty happy and didn’t really need as much good stuff to cling to. But living with Lyme is tough, and I find that noticing and being grateful for the good stuff is one of the things helping to get me through.

I’m uncomfortable saying there’s some huge “silver lining” to Lyme disease, because dammit, I’d give this up in a second if someone could get me healthy again. But for now, I have to find a way to keep living even though I’m always afraid of relapsing, and gratitude is part of that way.

Gratitude doesn’t fix problems, but it can make them easier to live with.

Thanksgiving

It’s Thanksgiving in the USA today. It’s become a major corporation-fueled shopping event in recent years, and people joke that it’s the day when we give thanks for what we have and then immediately go out to buy more. The corporate world has encouraged us to fixate on the “giving” part of Thanksgiving—so we’ll buy more stuff—and spend less time on the “Thanks” part.

But I love Thanksgiving, partly because I love the traditions and the foodways and the ritual that surrounds the turning of the year, partly because there may never be anything in the world so beautiful as my backyard blanketed in snow and seen through our dining room windows… but mostly because it’s deeply good to make time for reflecting and giving thanks.

When I was a kid, I didn’t really understand all this stuff about “being thankful”. I thought it meant that you had to say thank you when someone passed the stuffing, and that if you didn’t do it, someone might say that you’d been “spoiled” and had bad manners. So being thankful was basically just a way to avoid punishment from members of the extended family.

And then I’d always get worried that if I left anyone out, I’d be labelled as ungrateful, so I’d make these mammoth lists in my head, and it never really worked for me. But I’ve come around to believing that while gratitude is partly about offering thanks to others, it’s also about changing the way you exist in the world. So I don’t worry so much about being thankful for everything, and instead I try to be thankful more of the time.

I’ve spent the last year learning that quality of life is largely about what we choose to see. Gratitude doesn’t change the external circumstances at all—it won’t alter the facts. But what I’ve learned from hotline callers, who’ve known this far longer than I have, is that you can affect how you feel by changing what you choose to notice. When I seek opportunities to be grateful, it makes the genuinely awful stuff easier to bear.

So here are some things I’m grateful for todayHollisGuitarWalkerChristmas2011

I’m grateful for the family who’ve loved and cared for me so well over the years: Steve (Dad), Karen (Mom), Ruth and Byron (grandparents), George and Peggy and Hollis and Phoebe (grandparents who are gone now), all my aunts and uncles and cousins.

I’m grateful for Jasmine, whose love is a function that’s continuous everywhere and has infinite value. Aww. I’m grateful for the dreams we share (and those we haven’t finished negotiating), and for all the memories we’ve built together. I smile when I look at my pictures of her dressing a turkey last week, and I remember that she came and held my hand every time I asked her to come to the Lyme doctor with me so I wouldn’t have to be alone.

I’m grateful for Tabitha, my dear little cat, who survived a car accident last year at Thanksgiving and dragged herself home in the dark with a broken pelvis, mewing gently in what must have been utterly horrible pain. Thanks to a good veterinarian and months of TLC from us, she spent the afternoon chasing mice around the snowy backyard and is now curled up on a table watching The Magnificent Seven with my dad.

I’m grateful that we found a gluten-free bread recipe (my mom is GF now) that worked really well for making stuffing, since I firmly believe that stuffing is the whole point of the Thanksgiving menu . I’m grateful for playing Bananagrams with Byron and Jasmine while Ruth looked on, for an abundance of good food in a time where too many people have nothing to eat, and for a heated place to live as winter advances.

I’m grateful to Pope Francis for saying some important things the world needs to hear. I’m grateful for things that make me question how I spend my money and my time… and grateful that I still feel like I’m mostly making good choices in that regard.

I’m grateful for the bright stars on our evening walk tonight, and for the bitter wind that froze my cheeks and reminded me of the years I spent hiking in the Adirondacks all winter long. I’m grateful for the hope that, even though my body was exhausted and full of pain today, I might one day head back into the mountains.

I’m grateful for people who read my blog. I keep being surprised by how much pleasure I take from sharing ideas with you folks, and it gives me a ton of satisfaction to log into the analytics page and see that people are reading. Thank you.

I’m grateful for people whose music has carried me through so many sleepless nights in the last year and a half. Right now I’m listening to Annbjorg Lien and Roger Tallroth playing an absolutely gorgeous rendition of the Miller Boy’s Brudmarsch, but there are so many other people who’ve also helped me with their songs and tunes.

With less explanation, I’m grateful for:

  • Fountain pens and gorgeous inks, bottled so they’re more environmentally sustainable.
  • Chaga (Inonotus obliquus), the mushroom that helps support my immune system.
  • Tristan Henderson, for helping get me set up with a mandolin and an octave mandolin.
  • Not having to take quite as many pills every day, compared to last year.
  • Melissa Running and Bob Mills, for being there when I needed them, and for fostering my new musical loves.
  • Dr _______, for believing in me, treating me, and helping me to learn how to live with Lyme.
  • The team at NASCOD 2013, for listening to my presentation and saying so many wonderful things about it.
  • Sam Sanders, for recording Frost and Fire‘s album, which comes out next week.
  • Fragrance-free laundry detergent, because it means I can actually wash my clothes.
  • The bletted apple tree in our driveway, so rare that most orchardists have never even heard of one, and the way we’ve helped the local orchard to develop scions of it so it can live onward. It reminds me of Todd Alessi, our friend and piano tuner, who loved its apples very much. He died last month.
  • Peter Edwards, who moved to Vermont this year for a job that means I get to see him much more often.
  • Frost and Fire, for being my musical partners and friends. Susie Petrov, for being my friend and teacher and mentor for years now. Katie McNally, Shannon Heaton, Valerie Thompson, and Liz Simmons, for sharing some lovely music last weekend.
  • Days when I wake up and my body doesn’t hurt. There aren’t many, but I’m grateful for them.
  • Teachers who’ve led me toward the tools for surviving the mental and emotional parts of long-term illness.
  • Casey, who’s covering the hotline shift today so I can spend time with my family.
  • The fabulous garlic dill pickles we make from the Dinosaur Bar-b-que recipe.
  • WordPress, for making it so I can type this and you can read it.

And lots of others. Too many people to list, too many things to list. I’ll think of twenty more as soon as I hit “Publish”. And that’s kind of the point. Gratitude doesn’t change the facts, but sometimes it helps us to choose our response to them. Oscar Wilde wrote that all of us are in the gutter, but some of us are looking at the stars.

For me, that helps me to get through living with constant fear—seeking constant gratitude balances it out.

I’m a little uncomfortable posting this, because I’ve gotten really tired of people telling me that I need to “just focus on the good things”, and I get furious when I hear people implying, e.g., that poor folks wouldn’t be so homeless if they had better attitudes. That’s not what I see gratitude as: it’s not about ignoring the bad stuff or pretending it doesn’t exist. It’s about finding ways to even the balance out a little bit. It’s not about complaining or not-complaining. It’s about balance.

I can’t always live with gratitude in mind; I don’t think anyone can. Sometimes everything hurts too much, or it’s all too overwhelming. I’m not trying to say that anybody else needs to change, so if what I’ve written seems simplistic or irrelevant, please discard it and move along. I’m just writing what’s working for me right now. I hope it helps you!

If you liked this, please share it with a friend—especially if it’s a friend who struggles with a long-term illness.

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8 thoughts on “Fear and Gratitude: Giving Thanks

  1. Hollis, a mutual friend called my attention to your beautifully written post. I think you tell the hidden part of our story better than almost anything I’ve read (and as an activist, I’ve read a lot, from personal stories to scientific research papers). I’m in remission now– knock wood– but still fully understand and still often experience the fear and reluctance you talk about. The shape of my life completely changed as a result of complex Lyme disease. I too have found that gratitude– the minute to minute kind– is what makes my life meaningful. It brings me constantly back to living in the moment.

    Your postscript is right on, too. Thank you.

    1. Thanks so much for your comment, Annie. I’ve spent a lot of time since getting diagnosed with Lyme thinking about how much I had discounted or ignored—without meaning to—the struggles of people with invisible diseases. I think getting sick with Lyme has given me another tangible reminder to be aware of the struggle others have every day.

      What kind of activism do you do? I keep thinking that someday, once I’m a little healthier, I’d like to get involved in advocating for better treatment of Lyme—maybe this post is my beginning. I already do a lot of activism for crisis hotlines and suicide awareness, and this isn’t that different in some ways.

      I’m so glad that you’re in remission! Fingers crossed that it stays that way!

      What did you like in the postscript?

  2. I’ll answer your last question first, Hollis: I related to your hesitancy about posting, first of all. That unwanted, oblivious advise does get old, and I find that often people don’t “get” it even when you explain it. Oddly, it’s not just well people who do this. So many people with Lyme have a good spell, think they’ve found the answer and are convinced it will help everybody. The thing about Lyme (and other chronic illnesses) is that it is different for different people, and what works for me might not for you– or worse, aggravate your symptoms. And sadly, the very people so convinced they’ve found a cure often turn to me when they relapse. Mainly, what I can do is listen, help them find for themselves what they need, and maybe give them some information on how to find it.

    You asked about my activism. The year I was diagnosed, another friend of mine was also, and we talked about how hard it was to find accurate information about Lyme in Vermont. I’m used to outreach and information sharing, so I set up a website. That was over 10 years ago. The website led to an online support group, which is still going, with nearly 200 people (some with family who also have Lyme). Then we started, on a sort of ad hoc basis, doing outreach: talks at schools, libraries, wherever and whoever would listen. Then we started talking to our legislators, and learned how to set up a legislative awareness event at the state house. We’ve had great support for the legislation we asked for that would protect physicians who treat outside the ILADS inadequate “guidelines. I wrote the core of the legislation, which was first introduced 4 years ago. Each year we made some progress, but were not able to get past the house health committee. But last year some additions were made regarding insurance (a huge mistake that I advised against) that brought out the lobbyists. We got hearings, but the bill went nowhere. I’ve stepped back now, but others continue that effort.

    You are right about what you do being a lot like the kind of activism that we do. Education of public, medical community, and decision makers is critical, but we got there by reaching out to people whose lives are falling apart, and holding on until they can find a way to get help and to learn to live with the uncertainties of this disease. Many of those people are the people who have now become activists themselves.

    Our website, Vermont Lyme Network, badly needs updating, but you can read an outdated version of my story there. What is not in the story is that I was reinfected about five years ago, and underwent two more rounds of aggressive therapy that included both abx and herbal remedies, along with meditation, exercise such as tai chi. The second round of treatment put me on a plateau that was stable.

    When I went off antibiotics about a year ago, I told my LLMD that I wanted to see what else might be lurking that the Lyme had been masking. Lyme had kicked my migraines into high gear, and my migraine-savvy PCP worked with me to bring them under control (a miracle in itself). Then he and I figured out a couple of other non-Lyme related issues that have been addressed, one with surgery.

    Other than discovering that I’ve somehow become 70 years old (one week to 71), I feel better than I have in a long time. My remission seems to be holding. And I am happy.

    As for the postscript, this is the core of it that caught me: “That’s not what I see gratitude as: it’s not about ignoring the bad stuff or pretending it doesn’t exist. It’s about finding ways to even the balance out a little bit. It’s not about complaining or not-complaining. It’s about balance.” The rest fills in around that. It’s a great piece of writing, and I’m glad you added it. It is part of our story too.

  3. I read your post, which I found through reddit.com, which I am not really an avid reader of. My husband sent me the link to reddit specific to Lyme disease comments, as I had told him I felt as if I had read to the ends of the internet on Lyme research. Your story about Lyme and Thanksgiving resonates with me in so many ways, so I felt compelled to comment.

    I myself am a Lymie, and have been enduring the struggle of Lymes disease for 7 years now, although I was only diagnosed a year ago. As you know very well, it is an up and down battle full of difficulties. My life, my diet, my everything has completely changed. It has been difficult for me to mourn the life I lost, which included being a novice runner. I am no longer active as I once was, and am recently coming to the realization that I never will be. It has been an adventure of baby steps to come to and accept these realizations, and I am slowly coming around.

    I love your list of positives you note in your post, and the things for which you are thankful. Lyme has taught me life lessons for which I will forever be grateful. I think that having a chronic illness such as Lyme allows one to be truly grateful for the little things that most people don’t give a second thought. For example: that one day a month where you are able to take a walk and enjoy nature, the endless caring nature of a spouse or partner that supports you through this ordeal, the love of a pet(s) who comfort you in silent ways when you are feeling ill. The gratitude you feel when you make it through a really bad flare up/herx, knowing you made it and are still alive to enjoy another day.

    I will never look at life the same way again, and in spite of the difficulties that inevitably occur, I always try to take a moment and be grateful for those little things, and the joy they bring each day.

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