What do you do when life flips upside down?

June 15, 2015

 

I grew up with the notion that I needed to make a difference in this world. I’m sure some of this came from my mother and perhaps some of this was due to being Jewish in a mostly non-Jewish town and feeling different. Then again, I was terribly shy yet able to communicate through my writing and I tended to believe the myths that all great writers must suffer. But for whatever reason, I knew I was alive for some reason that continued to elude me as I grew out of wanting to be a primatologist or a psychologist and began studying business for want of anything else.

 

My life wasn’t atypical. I was the oldest in a dysfunctional family that looked beautiful on the outside, at least to my eyes. My parents felt proud that I was a good student; I graduated college with honors and then pursued business school only because I didn’t know what to do in the real world. All the while, I knew I could write but lacked motivation or passion for it. When I finally found that my greatest wish was matched with a talent for singing, I wondered if that could be my meaning in life—to sing on stage and make people laugh, cry, feel. During the day, I worked a different job so that my MBA wasn’t for naught but I wasn’t happy. Eventually, I moved to another state and enrolled in my second Master’s program to pursue elementary education. I loved it! During this highlight of my life, I met a great guy, taught school, married, bought a house and had two sweet babies. Life was idyllic. For a short while.

 

My son was 8 when we noticed nearly overnight drastic changes. We did what most parents would do—took him to doctors who pried, investigated, examined and concluded that perhaps our family was too huggy or perhaps we had mental disease in the family generations back (a relative I’d met once had married 5 times and had a dozen or so affairs) or perhaps we were too lenient with our son, or perhaps…. Doctors didn’t know why our little guy was suddenly full of facial and verbal tics, why he was depressed after being one of the happiest, most social kids around, why our little Hobbit with his curly hair and two breakfasts had a rapid increase in impulsivity and sensory issues. The doctors we saw didn’t know much or all about PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) or PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.) In other words, they completely missed the point that our son had an autoimmune encephalitis that was causing these symptoms.

 

It would take over two years, many mistrials with medications that further sickened him, and well over a dozen doctors to discover that he was suffering from Lyme Disease and co-infections. Who would have known? When was he bitten by a tick? I didn’t recall seeing one on him and I bathed him nightly.

 

He went from reading the entire Chronicles of Narnia at the age of 8 to not being able to read more than a couple of lines on a page; for 2 years, he and I cuddled nightly and read through dozens of books. Math became an insurmountable obstacle for him and handwriting declined. He lost a couple of years of school, unable to attend, and received tutoring through the district at home.

Chronic Lyme disease cannot easily be remedied. There is no cure for chronic Lyme disease. As the long-term stress in the family increased, my fatigue and anxiety became overwhelming. For years, ever since dropping out of a semester of college due to an acute case of mononucleosis at the age of 20, I would lead an active life, only to then collapse from flu, sinus infection, bronchitis or exhaustion. I lived with an underlying level of fatigue. Every so often, I fought through a darker lethargy but doctors could make no sense of it. At one point, I was asked if I wanted antidepressants but as this was prior to my son getting sick, I wasn’t depressed at all and was rather shocked that my doctor would suggest such a thing.

 

Sometime after my son was diagnosed with Lyme, I knew in my gut that I had this disease as well. I’d grown up rolling down grassy hills, climbing trees and jumping in piles of leaves in Connecticut. I recall one particular nasty tick that was embedded in the back of my head; this resulted in a trip to the pediatrician to extract it. I also suspected that my daughter had Lyme and co-infections—namely, Babesia. She had air hunger that wasn’t triggered by anything at all—it could occur in the middle of jumping on the trampoline with a friend or in the middle of reading quietly. Unfortunately, a new, young pediatrician we consulted stated this was simply stress. Later, I discovered that the run-of-the mill ELISA test they’d previously run (despite the fact I’d asked for a Western Blot) showed a positive result for Lyme. Unbeknownst to me, while the pediatrician told me that my daughter was suffering from anxiety, this test was sitting in her folder. “It’s a false positive,” I was later told.

 

The doctor who found the Lyme in my son tested my daughter and me via Igenex Labs. We both received positive results (even by CDC standards.) Finally, it all made sense—the fever my little daughter had at 2 weeks that resulted in her being hospitalized, the night sweats that plagued her when she was born, the food sensitivities. When we looked back, we could also see sensory issues with my son when he was young as well as squinting and eye blinking. I learned that Lyme can be transmitted congenitally, through the placenta, and through breast milk. I had nursed both children. For decades, I had believed myself to be allergic to antibiotics due to rashes I would get when taking them; it turns out that these were most likely Lyme rashes and that I’m not, fortunately, allergic.

 

What do you do when life flips upside down? When you feel like you’ve fallen through Alice’s rabbit hole and perhaps broken something along the way? I put the book I’d been trying to write on hold and began blogging on www.panslife.com. I started an in-person support group in my area that drew people from neighboring counties and states. I befriended wonderful women who led parallel lives. And I tried to help others in any way that I could, via computer or telephone. Because when my world narrowed, the only way to widen it was to use that new experience and learning to help someone else.

 

Throughout my life, I have struggled with many concepts and one of them is questioning why there is so much suffering among people. When I was younger, I questioned how something like the Holocaust could occur and this horror rocked my faith in many ways. I felt aghast over atrocities in Rwanda and other locations. There is no meaning or fairness in mindless pain and torture. I know people have “free will” but what meaning is in suffering? Currently, I question why our children must be afflicted by diseases that affect their joints, muscles, thoughts, and self-control. There is no cure and many doctors neither know how to treat nor even acknowledge that Lyme can cause all of these symptoms.

 

I also continued do question my own purpose in life. Sure, mothering and teaching are full of purpose, but perhaps there was something more for me to do. I could use my own experience to let others know that they are not alone and that hope exists. I was overjoyed when my son showed great recovery, was able to return to school and even made the high honor role. His healing represents hope for others.

 

Most recently, I was thrilled to become involved with the creation of the Lyme Disease Challenge (www.LymeDiseaseChallenge.org.) After seeing the success of the ALS ice water challenge, and knowing that Lyme is often misdiagnosed as ALS (as well as other autoimmune disorders such as Lupus, Fibromyalgia, Rheumatoid Arthritis and more,) many of us wanted to see Lyme brought out into the open. Just last year, the CDC raised its estimate of the number of Americans who are stricken annually from 30,000 to 300,000. Some medical practitioners believe the number could be closer to 1 million per year and that’s only in the United States.

 

I began working with four other women, all moms who have Lyme, some of whom have children who have Lyme, to coordinate an online planning group that would introduce to the world the idea of taking a bite out of Lyme. None of us had ever met; we all had different career paths and are from different and distant states. But we united in our mission to make change and spread hope. Groups and individuals from around the world joined in—from The Netherlands to Australia, from Norway to Singapore to the Czech Republic. Lyme truly is everywhere. The Lyme Disease Challenge movement became very exciting when celebrities such as William Shatner, Thalia and Dr. Oz lent support.

 

But at home, our own struggles continue. There’s no happily ever after—yet. My son continues to fight these diseases and I constantly worry about him. He has missed much of his childhood and too much education, yet he desires to be a doctor someday. I hope all of his dreams are still possible. Lyme has affected my daughter’s cognitive processes and we are working hard to get her back on track scholastically. She’s an amazing drummer and music has definitely set a rhythm to our lives.

   

Treating Lyme Disease in myself has alleviated some symptoms while setting off others. I could no longer ignore it; Lyme is multi-systemic, insidiously pervasive and can result in Alzheimer’s. But the one thing that I do when I collapse on my bed after teaching at the end of the day (as my husband cooks dinner) is to get on the computer to lend and receive support from others. I continue to blog on www.panslife.com. I am proud to be a small part of the success of the Lyme Disease Challenge. Despite the fact that I haven’t yet completed or published my first book or sang in public in many years, my life does have significance. My family’s suffering takes on meaning if it can be used to help others avoid some of the pitfalls we experienced, if we lead people to resources, if we can provide hope, if we can perhaps save even just one life.

 

Make sure to visit www.panslife.com to read more from Lisa.

 

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