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What Healing Looks Like After Losses From Lyme Disease

13 years ago, I became a mother of a beautiful baby boy. While I was enjoying this absolute miraculous time in my life, something sinister was brewing in my body. The shock and physical stress of carrying and birthing a baby also birthed the beginning of a war within my body as the spirochetes spread through my cells and biofilms. I had been infected with several tick borne infections, and I didn’t know it.

Months went by, and I couldn’t really move from bed. This was my maternity leave. I didn’t care. I was so enveloped with this love for my baby,  and I lay in bed feeling the warmth and joy of motherhood, accepting this fatigue just as a symptom of being an older mother.

I had been a school principal and a graduate faculty lecturer at a local university. I found myself unable to gather the stamina to get back on my feet. The pregnancy had been difficult. I couldn’t seem to recover. It was OK by me; this fatigue that took over my former self just gave me more time to be with my baby.

I had been a person who drove around with a kayak strapped to the top of my car. I kept skiis, sneakers and skates in my trunk. I even kept a suitcase in my trunk, for spontaneous getaways. I was known to pull over on a whim and jump on the trails. Now I was a mother. But why did simply being a mother take away not just my adventurous energy, but even my ability to get myself out of bed and to work?

When my brain began to be affected, it was everyone around me who began to notice. The memories of events lost over just a 24-hour period was shocking to witness. What you said to me yesterday, what I promised you, I completely lost all recollection of today. My actions scared people I loved, especially when I became lost at the supermarket and had to call for help. My actions got me into trouble at work, especially when I tried to argue that something you knew had happened yesterday, never occurred. My actions confused my family, especially when I put the gallon of milk into the oven.

I knew I could no longer perform at work.  It was traumatic, losing a career I had spent my life building. But still, I cherished the time with my son and now my newborn daughter. Something was going on with me, but it took a backseat. I relished in the joy of being a mom.

I didn’t realize that parasites had begun to silently ravage all of my organs.

Several months later, after a fabulous weekend with my kids, I woke up, alarmed. Every cell within my body screamed with an urgent cry. I’m not sure how I know, but  I knew I was dying. I drove myself to the clinic. What was happening? It was as if my entire body was shutting down. In shock, I was placed into an ambulance and eventually given several false diagnoses: heart block, strokelung cancer, sarcoidosis. How had all of this developed overnight? I spent the next 10 days in the hospital.

When I was finally diagnosed with Lyme disease, it was the moment we started connecting all the dots with brain lesions and dementia symptoms, and also the moment things spiraled downhill fast for me physically. Once I started treatment, every inch of my body fought in the war against the spirochetes, to stay alive. I was unable to walk the length of my driveway, I lost the ability to use my legs at times…the list of symptoms goes on and on, as I struggled to get my life back.

From the hundreds of people I’ve met over the years who have been affected by one little tick bite, what I have learned is that every one of us has a very different experience, everyone of us has a different onset, has different symptoms and has widely different responses to different treatments.  It seems to take the majority of us about 10 years before we start healing. I call it the “Lyme Coma.” During that 10-year time span, we try every possible way to get better.  We spend thousands of dollars looking for a cure — even symptom relief. We become complete experts on anything related, health wise or treatment wise. Sadly, when we start to wake up from this coma, even if we managed to keep our houses, our marriages, some friends, we realize that at the same time we have also aged 10 years on top of it all. So much loss.

I don’t regret the loss of my incredible career and spiral into desperate financial devastation. I miss it, but I know my life has a new purpose. Most of all, I’ve learned to accept joy and gratitude for what I now have as I try to discover what this purpose is.

The loss of my body — how it looked, how it worked — has been replaced with a love for myself for being able to fight this war, carry my children and for all the incredible experiences it has given me in the past. I can’t run now, I can’t hop on my roller blades and grab a hockey stick, but hey, I’m thankful to this body that I ever had those experiences — because what amazing experiences I’ve had! I respect, have this love for and give thanks to myself for these things. It’s so rewarding to give yourself love instead of being miserable about what you can no longer do. When I first tried this, I was overwhelmed.

What I do regret is the time lost with family and friends, the mom my kids never got to know. With this regret brings a resolve to change. I’m going to make sure I spend time with the people I love. I’m going to participate the best I can. I’m going to live. I’m not going to sit by the sidelines anymore. I‘m not going to keep silent when things matter. I may not be able to show my kids the ambitious, accomplished, over scheduled, driven person I was, but I can teach them how to be a better person than I was. These kids will know strength, courage, perseverance, self-love, gratitude, how to be kind and giving and how a great attitude can carry them no matter what life throws their way. They will know what’s truly important in this life: Family. Friends. Love. Faith. God. Taking care of the world around them. Knowing this alone, is healing.

We have so much loss. Counteract that. Be appreciative of every moment of every day. Be happy with who you are. Give it all you’ve got. I see you. I hear you. I feel for you. And I am here for you.

 

Photo by Denys Nevozhai via Unsplash.
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