A Daughter’s Reflections On Lyme Disease

By Clara Jekel

I’m 15 years old.  My mother has Chronic Lyme Disease.

To be able to understand what I am, you must first understand what I was. Before my mom was diagnosed with Chronic Lyme Disease, I was very dependent on her. She ran her own daycare to help finance my needs and wants, cleaned up after me, and offered me endless emotional support, which I completely took for granted. When I asked for her help, she dropped whatever she was doing in that moment to assist me. I’m not saying she was absent of flaws because no person is, but she’s definitely one of the most inspiring people I have ever met, and to this day she remains the only person I believe truly understands me.

My mom has always had medical issues. She’s an insomniac (which, as you can imagine, made her exceptionally patient in the morning) and she always seemed to be going to the hospital for one thing or another. I remember sitting with her in church, knowing something was terribly wrong.  I asked her if she was okay and she replied she was having trouble regulating her body temperature.  This is just one of  many Lyme Disease symptoms.  The most obvious symptom of her disease happened before I was born, when she gave birth to my older sister Hannah. The stress of the labor on her already taxed immune system caused her to develop Bell’s Palsy, or partial facial paralysis. We know now that like us, her doctors were unaware of the link between Bell’s Palsy and Chronic Lyme Disease.  Insomnia is also a symptom of this detestable disease.

About two years ago, my mother’s medical issues increased in intensity. She was sick for months, alternating back and forth between the hospital and her bed. At the time, it was late Summer and our air conditioning was broken, which meant our house hovered between high eighties and low nineties, which didn’t exactly help the whole situation. Again, we didn’t know then what we know now.  Temperature extremes can cause extreme physical stress in Lyme patients. By that summer two years ago, I was used to her being sick and waited for her to bounce back to what had become our new normal. She didn’t.

Initially, there was speculation in our family about what she had. Different diseases were researched, studied, and considered. For years the doctor’s were unable to diagnose her.  We all thought she had cancer, but no tumors appeared in her scans. The possibility of Lyme disease was suggested, but I don’t think anybody seriously considered a diagnosis of Chronic Lyme Disease seriously until one day when things got really bad.

Our house was probably the hottest it had ever been, and my mom was simply delirious. She didn’t really understand what was going on but we knew we had to get her to air conditioning, so we called my sister Rachael. Rachael was living with her husband and son a five minute drive away, and she quickly came over to pick us up. I remember packing my mom’s bag because she was unable to, packing my own, and helping her up and down the stairs with my little brother Isaac. She was stumbling and confused, and kept asking us the same questions over and over. We got her in the passenger seat of my sister’s car.  Isaac and I sat in the back seat.  My mom’s back was to us. She asked where we were and I said, “We’re right here, Mom. We’re going with you.” We started driving. My mom, confused, said, “Where’s Clara and Isaac? Where are they?” Again, I said, “We’re here.” Every few minutes, she would forget we were with there and ask where we were, and I’d say, “We’re here.”

When we got to Rachael’s house, Isaac slept in my sister and her husband’s room while I took the guest bedroom with mom. Eventually she became coherent, particularly because my sister and I were practically forcing water and food down her throat. The air conditioning helped a lot, too, but I knew the next day, we were going back to our house. That night, while mom was resting, I went into the kitchen where Rachael was making her this disgusting smoothie of healthy things. Being Rachael, she immediately asked me what I was feeling and how I was processing the situation, and I confessed that I just wished she was diagnosed already, even if it was bad, so we could move on from where we were right now.

The time my mom was really sick and without an accurate diagnosed have been the worst months of my life. Not only did it mean the person who had taken care of everything for me was now incapable of doing so – which was a shock for me, who’d been so ignorantly blessed – I was worried about her dying, even though a part of me never fully believed she would. Not only that, but it put a strain on my parent’s marriage, because my father refused to believe she was that sick. It’s funny how fear manifests differently in each individual affected by this illness.

Finally, the air conditioning got fixed and mom’s condition improved.  She also began talking to my brother-in-law’s best friend who had been treated by an infectious disease specialist, also in Detroit, for Chronic Lyme disease. Once she began talking with him, she realized they had a lot of the same medical issues.  I imagine she felt less along after that.  She also be an seeing an infectious disease specialist-the same doctor who treated my brother-in-law’s friend.  Treatment is a slow tedious process and it has been a painful, humbling and sometimes humiliating process for my mom, who has deteriorated from one of the strongest women I know to someone who struggles with pain and frailty and is dependent on close family members for even menial tasks.

To fully realize what my mother was going through, you have to at least be able to fathom her disease. See, Chronic Lyme Disease does not officially exist. At least, that is the viewpoint of countless doctors who have reviewed my mom’s case.  Most believe the diagnosis to be a “catch-all” broad, generic term used to mask other potential illnesses like Multiple Sclerosis, Rheumatoid Arthritis and Lou Gehrig’s Disease.  If you look up “Chronic Lyme disease” in the official CDC website, nothing shows up, but just “Lyme disease” does. The difference between the two is Lyme disease is something that appears soon after infection, but Chronic Lyme can remain suppressed in the system for years and maybe forever if there’s not a stress trigger. In my mom’s case, the first symptom was Bell’s Palsy, which her doctor now believes was triggered by the stress of giving birth to my sister 18 years ago. Her immune system was already taxed by the Lyme infection. The added stress of giving birth with a compromised immune system led to the manifestation of Bell’s Palsy. Her doctor estimates she’s had Borrelia burgdorferi (the bacteria responsible for Lyme disease) for at least 18 years.  It’s everywhere in her body, including her brain.

Lyme Bacteria

I’ve read and seen for myself evidence that supports the theory that Chronic Lyme disease patients experience rapid decline of their quality of life.

In a way, my mom’s diagnosis was the worst thing that ever happened to me, but it was also the best. It made me who I am today, which, unlike Me From The Past, isn’t someone who takes advantage of others.  I was never really a materialistic person, but it made me a lot less reliant on objects, which is now one of the things I like the most about myself.

It’s hard to learn to live with the unexpected.  When my mom was diagnosed and forced to close her daycare business for the sake of her health, I didn’t have the financial safety I was used too. I’ve given up a lot of luxuries I never even gave thought to before all of this.  And I am scared sometimes about what will happen to my mom and what new health problems might happen. I worry about what this will mean for my family.  However, as my mom always reminds me, God has a plan and all things, no matter how painful, will work out in the end. If we’re lucky, we will grow and learn from all the hard things in our lives.