Lyme and 13 Life Lessons
Just one week into joining the Foundation team, I was asked to cover our annual LymeMIND Conference—a gathering of researchers, doctors, advocates, and patients, all working together to understand Lyme and tickborne disease. As the new communications manager, I was hoping to make a good first impression. My plan was to understand the conversation, interview a few key speakers, and deliver a social media clip that showed the Foundation’s commitment to furthering research in this area.
One catch. I knew very little about Lyme. Being from the Northeast, I had some basic knowledge about the classic signs: a bull’s eye rash, joint pain, fevers. And, over the years, I’d come across acquaintances, neighbors, and former colleagues who were diagnosed, took antibiotics, and seemed to be fine in a months’ time. Compared to other illnesses, I thought Lyme was pretty black and white. The conference opened my eyes to how awfully murky it was in terms of physical and mental symptoms, diagnoses, types of treatment, and the endless debates over it all.
As I sat in one of the sessions, a speaker began to review a laundry list of symptoms that could potentially surface in people with untreated or post-treatment Lyme or those with a battery of co-infections. For a few minutes, I forgot about my assignment and began to silently check off the ones that I felt I had.
Chronic migraines. Check. Anxiety and depression. Check, but that’s common. Migratory or stabbing pain. Yes. Tinnitus. Yes, I have that too. Light and sound sensitivity. Check. Dysautonomia. Check. Sudden or unexplained food allergies. Check…
My jaw fell slightly open after a while. [Expletive.] I think I have Lyme. I think I’ve had it for years.
Over the next several months, my health took a turn for the worse. The intermittent crawling feeling in my legs became constant and I had stabbing sensations throughout my body. An unbearable squeezing pain took hold of my right calf for weeks. My migraines intensified, making me want to vomit. Once that resolved, I experienced my very first instance of vertigo.
I was driving through the winding, one-way back roads of southwestern Connecticut, where white picket fences, colonial homes, and maple trees usually make for a scenic route into work. Rain was pummeling my windshield and the wipers were swinging on full speed. Suddenly, I saw white and the whole world seemed to do a 360. When I reoriented myself, my heart was racing, my mouth was dry, and my arms felt like cotton. Then, a strange buzzing spread throughout my whole body. I called 9-1-1 in a panic and was rushed to the ER, where I was told I might have basilar migraines.
I knew it couldn’t be just that. In my gut, I knew something was very wrong.
It took me two weeks to recover from that episode. Lights of all kinds—any kind—made me dizzy: computer monitors, TV screens, fluorescent office lights, headlights, my iPhone. My husband drove me to and from work every day. I felt completely defeated. I was 37 but felt so much older. I was exhausted, scared, depressed—and embarrassed of what my new coworkers would think of me.
Within the year, I had already visited over a dozen specialists. Allergist. Neurologist. Psychologist. Cardiologist. Repeatedly, I was told to address a single problem. Go on an allergen-free diet to curb reactions to food. Use Botox for your migraines. Take magnesium and get restful sleep to ease the leg cramps. Eat salty foods to manage POTS.
No one—NO ONE—ever asked me to get tested for Lyme or even posed the possibility that I had a tickborne illness.
Except for my colleagues at the Foundation. Our Founder Alex Cohen, Executive Director Jeanne Melino, and Senior Program Officer Ben Nemser urged me to get tested and made it all possible by recommending the appropriate diagnostic tests and expert doctors in our area. I can’t thank them enough.
In April 2019, results confirmed that I had Bartonella and indications of Lyme. Finally, I had some tangible information.
A few months later, my husband and I connected with speakers from last year’s LymeMIND conference, Dana Parish and Dr. Steven Phillips, who were both so generous with their time and advice. They calmed our fears after initial treatment caused me to have low blood pressure and triggered a mental health crisis.
As a working parent, I was used to powering through feeling unwell. But this was a mind-body illness I couldn’t shake, no matter how hard I tried. I’d lost 12 pounds. My hair was falling out in clumps. My anxiety peaked. Dark thoughts crept in. I couldn’t drive. I couldn’t watch TV. I couldn’t play for too long with my children. I couldn’t exercise—the way I would usually cope. And I couldn’t go on a much-anticipated business trip.
I was guilt-ridden for depending on my husband—a physician himself—for everything. Despite being in the midst of an extremely stressful job transition, he took over all household chores: laundry, dishes, groceries. He bounced from Whole Foods to Trader Joe’s to DeCicco’s to our town market to find me gluten-free, soy-free, nut-free, dairy-free things to eat. He fed and bathed the kids. He made weekend plans to cheer me up. He took me to doctor’s appointments, interpreted lab reports, asked questions—tons of questions. He became my sole caregiver. My superhero. Except I didn’t want him to be. I just wanted normalcy.
Things aren’t normal yet. They won’t be for a while. Every day, I am digging myself out, pulling myself back together, and mopping up tears. My new reality is antibiotics, probiotics, B12, mineral powder, collagen peptides, salt tablets, compression stockings, herbal teas, turmeric, food every two hours (a must, or I become hypoglycemic), meditation—and lots of long, exceptionally tight hugs from my rock of a husband and two beautiful boys.
I don’t believe in coincidence. All things do happen for a reason. When I accepted a position at the Foundation, I knew of its Lyme Initiative and the incredible support Alex and Steve Cohen have poured into research and awareness. But I never knew it would affect me personally. The universe was looking out for me and my family.
I am so grateful to have been at exactly the right place at exactly the right time and to have been surrounded by a community of supporters, starting with an office full of well-wishers. When I needed to make mid-day doctor’s appointments, I was told, “No problem.” When my blood pressure fluctuated and I needed to prop up my legs, I was told, “We’ll get the pillows.” When I asked to work from home for a week, I was told, “Take your time.”
I am also keenly aware that most people are not this fortunate and don’t have the same access to care as I do. Nor do they have the same financial resources. I now have a much deeper connection to the Foundation’s mission and the potential impact we can have on those who are suffering or have been suffering for decades.
So, what is the takeaway, other than reinvesting myself in my work, knowing that it has taken on a whole new meaning? With every challenge, every obstacle, there is an opportunity to learn. For me, this has been one of the most humbling experiences. It has taught me lessons that I’ll carry with me always, personally and professionally. I hope they resonate with everyone:
- Blessings exist everywhere. Just look.
- Ask for help. It is there, waiting for you.
- Getting out of bed is a win. Getting out of the house is a win. Driving down the road is a win. Making it to work is a win. Celebrate every small step and you’ll see how far you’ve come.
- You are physically and mentally so much stronger than you think. Believing it is more than half the battle. The rest is just proving what’s already true.
- Generosity isn’t always in giving to others. It is also in self-care and self-love. Practice giving in. Practice saying no. Practice admitting, “I can’t.”
- Surround yourself with people who will root for you, who will say they are proud of you, who will pray with you, and who will lift you up—sometimes, literally. Forgive those who won’t.
- Know that every person has a story and that behind the daily “Hi’s” and “Hello’s” is a well of stuff that’s waiting to be told. Listen.
- Spend a lot of time being physically close to the people you love. They radiate positivity and it seeps into you. Hug them, lean on them, cry on them, kiss them, fall asleep with them.
- Have an outlet: draw, sing, dance, write, meditate, move. Don’t become stagnant or stationary. Keep going and your mind will follow.
- Let go of the small, petty things. There’s zero time for that.
- Be patient. Be compassionate. And once you’re able, be a resource.
- Say thank you. Over and over again.
- And breathe. Always breathe.