Living, Loving and Lamenting With Lyme: An Open Letter to the Nasty

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 20s 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 lay 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 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 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 staredown, 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 doctors’ 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 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 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.

This post originally appeared on LymeDisease.org.

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