https://www.lymedisease.org/messages-lyme-love-story-falcone/

“Messages on the Mirror”: Family endurance and a Lyme love story

By Donna Z. Falcone

If you have lived with chronic Lyme disease, you may be familiar with this phenomenon.

Significant life events—the ones most people never forget—can suddenly disappear, like water down the drain, only to bubble up again around the bend.

Take, for example, the brown shipping box that sits on the floor of my art room. Every so often, I notice the brown box and wonder what’s inside.

Since I don’t feel like crouching all the way down to the ground for a look inside, I just stare at it until the memory returns.

Oh . . . that’s right, I tell myself. I wrote a memoir… Messages on the Mirror: Lovenotes and Lyme. Those are extra copies. I leave it there, unopened.

How could someone forget that, right? I mean, writing a whole book, even if it’s not on the best seller list, is a victory! I even give myself extra kudos for having done it under the duress of chronic Lyme disease. The irony is not lost on me that someone with a memory like mine would set out to write a memoir in the first place.

Years of gathering bits and pieces of my life in journals, computer files, calendars, and the backs of pharmacy receipts and old envelopes or whatever else was handy at the time—and managing to not lose them!—was an accomplishment. Spending eight years organizing it all, hammering down timelines, then writing and rewriting to transform a scattered heap of notes into a memoir, seems too big a deal to forget about.

My family’s story

When I pass by that box, and do (eventually) recall what it holds, I’m reminded that this is the story of my Lyme journey. This is my family’s story! And, I am reminded of the many reasons I wrote it.

I wanted to tell my story for the patients going through the surreal journey of diagnosis and treatment of Lyme and all that goes with it. For them, I hope my book can serve as evidence that they are not imagining things. To tell the truth, it surprised me a little that I also needed evidence. I needed something to hold in my hands that says, Yes Donna, that really happened. See . . . It’s all right here.

It also felt important to tell people who love someone with Lyme—I see you and know it’s hard for you, too. Lyme disease impacts everyone: parents, spouses, children, friends, family, co-workers. Diagnostic tests can be unreliable and well-informed doctors are hard to find. We don’t always know how long treatment will last or how much it will cost to get better.

I know you want nothing more than to have us back, whole, so that we can move forward together. We want what you want, and things can get very emotional. We try to stay positive, but we often struggle. We fight, even.

Isolation is hard. Intimacy is hard. We can feel disoriented, frightened, demoralized, and hopeless, and we are always wishing this thing called Lyme disease was just a bad dream. But it’s real, and its impact is far-reaching, and sometimes it can even teach us that we are never not whole, and we can always move forward from where we are, now. We don’t have to wait to move forward.

Making it to the other side

I want to share what my family and I went through, what it was like when my kids and husband bore the brunt of all the housework, shopping, and cooking—and how we came out on the other side.

In the end, I think my favorite thing about my book, is this: It’s not only a Lyme story, but a love story. And who doesn’t love a good love story now and then?

For my fellow Lyme disease patients, do you struggle with reading print (like I did)? I have tried to make this book more accessible to you. It’s printed it in a larger font with wider than expected spaces on the page. The chapters are very short, in case you have a hard time focusing (or staying awake, for that matter) while reading. The titles are very descriptive, in hopes they’ll provide distinct clues for finding your way back to your place should the bookmark fall out and get lost.

If you have walked the Lyme journey, I hope you can see yourself in my story. If you love or care for someone with chronic Lyme, I hope it’s helpful to see another family traveling a similar, often messy, road. Messages on the Mirror is my story—but parts of it may be yours, too.

Donna Z. Falcone is a writer, poet, and artist.

Learn more about Donna and her book on her website.

Messages On the Mirror can be ordered in paperback and e-book formats on Blurb.com, an independent book platform.

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**Comment**

I’m thankful that patients that “reach the other side” of health are taking the time to write.

Years ago, when I was desperate and at my worst, I contacted a recovered patient online that had a website. I just needed to hear that there was hope.  Not knowing me from Adam, he replied immediately.  I have found this to be the case with most patients.  They “get it.”  They understand the looming fear, isolation, doubting your own sanity, and concern over what the future holds, and they all want to be of help.  If there’s one thing this monster can do, it can give you compassion for others.

The piece of advice I never forgot was, “Don’t be depressed about feeling depressed.”

He said you need to give yourself permission to feel lousy and depressed.

Man, did that help me.

The other thing that helped came from my mom – who struggled with the ability to sleep.  She wasn’t a Lyme/MSIDS patient – just an elderly woman, like so many others, who struggled with sleep.  She also told me to give myself permission that sleep just isn’t happening, but to use it to be productive.

During these sleepless hours, usually between 3-5am, I read countless books and articles on tick-borne illness and other health topics.  I covered a lot of ground in those wee hours of the morning.  Looking back, those well spent hours gave me the foundation I need today to deeply understand topics to help others on the journey.

We all have a place on planet earth, and we are all needed.  Chin up and don’t quit.  Your better days are coming.  For now, give yourself permission to feel like crap, be unable to sleep, to hurt virtually everywhere, to forget simple words like “where,” and all the other lovely things happening to your poor body and mind.  There are many silver linings – you just can’t see them clearly right now, but you will.

Go here for my story.