Guest Post: Living, Loving, and Lamenting with Lyme: An open letter to the nasty nymph who picked me
Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
By Lindsay Penkower
Dear Nasty Little Nymph,
Don't let the title of this article fool you. Things have been downright sucky since you picked me.
I bet it was in my early 20's during my obsessive hiking phase, where, with no kids and no real responsibilities, I spent the majority of my weekends trudging through your neck of the woods without a care in the real world. I’ll chalk that one up to home court advantage.
Or perhaps you launched a sneak attack during one of those long treks down to the beach where I was too distracted by kids (and my role as a professional Sherpa) to remember to put on long pants.
Or maybe, just maybe you stole a bit of my blood and ultimately a great deal of my energy, during one of those "glorious" Sunday morning nature walks I like to take with my family—you know the ones that usually end with me pushing a 75 pound stroller up a steep hill while trying to dodge fruit snacks flying out the sides, as well as my husband's disdainful "I-told-you-so" looks.
Whenever, wherever you decided to infect me, your bite would change the course of my entire life and shape me into the person I am today. And even though you can't hear, speak or read for that matter, I feel like I needed to confront you and tell you exactly how I feel. Here is my real, raw, honest and sometimes downright depressing letter to you:
In some ways, you are a thief of epic proportions. You have stolen the life I once knew and loved—one where I was happy, healthy and hopeful for the future. I spent days crying in frustration as I was forced to merely listen to the beautiful noise of my three kids laughing and playing downstairs while I laid sick and helpless in bed. I would stare aimlessly out the window aching to be the active, present, and vivacious mother my kids so desperately needed and deserved. But instead, I was alone. And sick. And scared. And waiting for answers that I felt would never come. All because you chose me. And it's not just me you hurt you nasty little Nymph, but my kids too. In some ways, they have felt the sting from your bite even more deeply than I. They miss their old Mom. The one who played excessive rounds of hide-and-go-seek and always managed to fit in the tiniest places; the one who at bedtime could crack their door open at just the right angle to make sure that the "bad guys" don’t get in; the one who knows just what to say when one breaks down in tears after discovering that flowers (and people) don’t live forever. My daughter asked me the other day, "Mom why can't you volunteer in my classroom like the other Moms?" Now, let’s assume that a nasty little bug like you even has feelings—doesn't that break your heart? I was supposed to be my kids eyes and ears, guiding them through this crazy thing we call life. But instead, I'm sick. Because you chose me.
Despite all of the things I've missed out on because of your seemingly innocent choice—the birthday celebrations, class parties, soccer games, showers, weddings, and bedtime stories, I will never forgive you for taking away my precious time with my newborn son. There should've been a lot of firsts—first time making eye contact, first smile, first laugh and first time rolling over. There should've been many lazy Sundays where we sat and watched his siblings play while he nestled deep into my chest and I ended up nodding off to the rhythmic movement of his breathing. And finally, there should've been at least one early morning stare down, where I would place him on my lap and his Dad and I would examine and admire every inch of his face and make determinations as to who he most resembled. And of course, most often, it would be me.
But there were none of those things. Instead, I spent my time in multiple doctor's offices across the country, where I had to endure painful and sometimes useless treatments, the worst of which was a prescription for steroids. At the tender age of four weeks, I could no longer feed my son from my body. I felt useless, hopeless and resentful. All because a little heartless, callous and wretched little nymph like you, chose me. Oh and let's not forget the myriad of painful and bizarre symptoms which started with numbness, tingling and gradually lead to facial paralysis and then the inability to speak (which subsequently landed me in the ER). And the most life-altering, horrible and painful complication that most likely arose from your nasty little bite—my profound hearing loss—that would forever change my ability to communicate with my friends, family members and kids. That was the loss that robbed me of a life I once knew and loved—full of sound, music and familiar voices. Now as I sit here recovering from what I hope is my one and only cochlear implant surgery, where the pain and fatigue feels too much to bear, I can't help but wonder why you chose me. Someone that had so much to live for, so many others to care for.
But, after forsaking your name and your entire existence, I have one more thing to say to you. Of all the things you have taken from me, including my physical strength, ability to mother and hear the sweet sound of my daughter’s voice, your choice has inadvertently given me the greatest gift I will ever receive. You have actually given me strength that goes way beyond my physical being. You have equipped me with the greatest problem-solving skills and now my goals, desires, aspirations for myself and my family are higher than I ever thought possible. You have given me perspective—I no longer worry about trivial things like my underwear being neatly folded in my drawer or whether my kids' socks are on inside out before they leave for school. You have bestowed upon me a higher calling in life that extends well beyond caring for my immediate family and that calling is to constantly fight for my health and happiness and help others do the same. I laugh more, worry less. And when I'm feeling alive and healthy, which fortunately is happening more often these days, I embrace it with a fervor and appreciation unlike anything I have ever experienced. And finally, little Nymph, you have given me a heck of a lot of faith in my body and in humanity in general. The kind of faith that can carry me through the sick and difficult days and instill me with the hope that one day I will beat the Lyme and co-infections that have taken so much from me.
Oh, and one more thing. Because you chose me, I have become the mother that I always wanted to be. I may not go to every single class party, soccer game or dance recital, but now I’m a living example of what I try to teach my children on a daily basis--fight for what you want in life, but learn to accept those things you can't change and embrace and celebrate the unique and beautiful person you are.
So thank you for choosing me. The one who went through hell, but came back a stronger, wiser and better version of herself.
Lindsay is a recovering lawyer and teacher turned writer, blogger, and advocate for healthy living. She lives in Danville, California with her supportive husband and 3 energetic kids.
Photo Credit: BrittRene Photography
"What I like most about change is that it can be a synonym for 'hope.' If you are taking a risk, what you are really saying is, 'I believe in tomorrow, and I will be a part of it.'" - Linda Ellerbee
This article was first published on The Mighty on April 10th, 2017. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
If you were to ask me, "What's been your worst symptom of Lyme disease?" I would tell you it's not the pain, or the fatigue, or the brain fog, it's the unrelenting health anxiety. With the other symptoms, I can trust myself and take the appropriate steps to feel better. When it comes to health anxiety, it takes over my mind and I succumb to downward spiral thinking that often ends up with a trip to the emergency room.
According to the DSM-5, "health-related anxiety is a non-pathological response to a serious illness." In other words, when you're sick it's perfectly normal to be anxious about your health. It's good to be aware and alert, but when not kept in check, health anxiety takes over and becomes counterproductive to healing (and then I become anxious about how the anxiety is impacting my health and the cycle continues).
People rarely die from Lyme disease; however, it does happen, which causes me to be hyper-vigilant. When a previous symptom returns, I don't worry, but with Lyme disease, new and worsening symptoms are frequent and change with every adjustment in medication. Each time a new symptom crops up (like a sharp pain in a new location or fluttering in my heart), a new wave of anxiety rushes over me. I'm afraid to take new medications and supplements, because I never know what new symptoms will be unearthed. I've also developed extreme body awareness, so I feel every single skipped beat and see every new mark, lump or bump.
I'm not alone in this. Many people with chronic illness experience frequent health scares. The difference between this and other symptoms is it's rarely talked about. Personally, I'm afraid to look irrational, or seem like a hypochondriac, so I keep it to myself. This creates more anxiety, because I worry if there is something wrong with me, and criticize myself for not being stronger. If more people talked about it, we could build more support within the community.
If doctors and hospital staff were more aware of how health anxiety manifests in chronic illness patients, they could do a better job of being sensitive and help navigate possible solutions. They could be compassionate to the fact that with each new prescription or invasive procedure comes a host new of worries, and have open conversations about the risks. Too often, I get told "not to worry," which is easier said than done. However, I must give credit to the doctors who have gotten to know me and consider "peace of mind" a reason to run a test, and try not to overload me with medication and supplements.
After about year of feeling stuck, I started searching for answers. I learned about Mindfulness Based Stress Reduction (MBSR). MBSR uses mindfulness techniques and body awareness to reduce negative thinking. Mindfulness breaks the cycle of ruminating on the past and the future. It's an excellent treatment for health anxiety in chronic illness patients, because it is designed to help both adaptive and maladaptive stress. I found a course at a local hospital and signed up.
In my class I learned about meditation as a way to quiet the "monkey mind," the uncontrollable thoughts that bombard us throughout the day; and I trained myself to think with a "wise mind," a balance between the emotional mind and the rational mind. I learned to trust my gut instincts, but to temper my emotional response with a rational problem solving approach.
This mantra from The Last Best Cure by Donna Jackson Nakazawa has been a big help when I start to feel the panic set in: "These symptoms are present now, but they will go away again. And, if they don't go away on their own, I can take action, call the appropriate doctor, go in for tests if need be—and yet still remain free in my mind to find beauty and joy and quiet as I do so."
While my health anxiety is far from gone, it has improved with mindfulness meditation and positive self-talk. It's become less about hoping I will never have a new symptom to learning how to cope when a one shows up.
My wise mind is becoming more reliable, and my monkey mind is finally taking a much needed break.
"Our doubts are traitors and make us lose the good we might often win, by fearing to attempt." - Jane Addams
Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
On March 9th, 2017 the Global Lyme Alliance hosted an Evening of Art and Education in Chicago. It was the the first GLA event held outside of New England. The Event took place at the Matthew Rachman Gallery and featured two Lyme doctors, Dr. Casey Kelley from Whole Health Chicago and Dr. Christopher Janson.
The evening began with a social hour with drinks and gluten-free appetizers. I brought my husband, so he could meet people in the Lyme community and learn some new information.
During the social hour we met Kasey Passen, a Chicago area Lyme fighter, who reached out the GLA to bring the event to Chicago, and did much of the planning. We also talked to a newly diagnosed patient, just starting out on the long road to healing. There was an electric energy in the room of camaraderie and understanding.
I was delighted to meet the CEO of the GLA, Scott Santarella, and introduce myself as a contributor to the GLA blog.
After the social hour Scott and Kasey talked about the GLA mission and the importance of bringing events to the midwest. I was touched when Scott said, "There is no other disease in the world where the patients are treated so unjustly."
Then, they introduced the doctors: Dr. Christopher Jason is a neurologist, who works does research and works out of the University of Illinois at Chicago. His current research on the blood brain barrier is funded by the GLA. Dr. Casey Kelley is a functional medicine doctor at Whole Health Chicago.
The doctors gave brief explanations of their areas of expertise and then answered questions from the attendees. People in the group had excellent questions about testing, symptoms, depression and Lyme, and many other important topics.
Dr. Kelley talked about how in Lyme treatment there are, "Different paths up the mountain," and that everyone responds differently. She also commented that a major part of Lyme treatment is "cleaning up the mess, so the body can rebuild on its own," and said, "remission is possible."
It was a lovely evening and I enjoyed the atmosphere. I came away hopeful, but as with anything related to Lyme, also frustrated and confused about why recognition and funding continues to be an uphill battle.
Here's a picture from the end of the evening with fellow Lyme fighter and friend, Jenny Buttaccio:
I want to thank the GLA for bringing the event to Chicago and I look forward to future events.
"Life is precious and time is a key element. Let's make every moment count and help those who have a greater need than our own." - Harmon Killebrew
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.