Learning to Pull Strength from the Unexpected Parts of Life: Why Sarah Chooses to Fight Chronic Lyme Disease with Optimism + Adventure
“Where’s my happy girl? I never see you smile anymore.”
My jaw clenched and I stared straight ahead as it became increasingly more difficult to breathe. This was the start of my fourth panic attack today, I noted with a journalistic objectivity. They’d been getting more and more frequent for months but even this was unprecedented. I counted the passes of the windshield wiper as I tried to divert my thoughts...
This is Sarah's story...
As she sets aside the fear of never reaching the life that she had once hoped for, Sarah pulls strength from every aspect of her life, both painful and hopeful, and uses it as every reason to see everything that comes her way an an opportunity to remind herself that she is already enough.
That the way in which she chooses to live now, is what makes her enough, and that the mishaps, worthy-of-a-good-eyeroll doctors, misdiagnoses, and uphill battle that so often leads you through the doorway of Chronic Lyme Disease, as well as the co-infections that so often go along with it, is simply part of her story. Lyme or no Lyme, how Sarah chooses to embrace the many ways in which she can feel alive is what continues to make her the determined, empathetic, positive, resilient, and kind-hearted young woman that she is today.
No matter how hard it tries, no disease can take this strength away from her. Why? Because Sarah has made living a life more than a priority rather than an secondary option.
...Thirty-four times before my mom tried again:
“I have a hair appointment this afternoon that I’m not going to use. Why don’t you take it and go get your hair blown out?”
“I can’t let anyone touch my hair. It’s all falling out,” I cried.
Breaths turned to gasps as I fought for air. I had gotten really good at these attacks lately, and usually no one could even tell they were happening, but this one was different. I had no control. The tears were coming so heavily now that I couldn’t see. I knew she was right: I couldn’t remember the last time I felt truly happy, the last time I could think or even see clearly. My brain was foggy and impossible to decipher. You know when you try to look out a window but instead end up focusing on the glass panels in front of you? That’s how I felt always. Like I could see things happening, but only blurry and in my peripheral vision, only vaguely able to comprehend what was actually going on around me. The doctors told me to try exercising more, to drink more caffeine, to stop napping so much, but for all of their suggestions they had very few answers. If the doctors and their tests thought there was nothing wrong, I thought, then it must just be me.
Two weeks later, I found myself in urgent care hours at the campus counseling center. After five years and countless opinions, I had finally reached such a place of desperation that I started to believe all the doctors: I wasn’t sick, I must be depressed. At least if I had a name for my problems, I could start to fix them. After a short wait I entered the psychologist’s office, and I must have really looked like hell because after just a few minutes she quickly ushered me along to the psychiatrist. We would begin with a series of questions, Dr. Hu explained, that would help him to understand exactly how this depression was impacting me. To each of the twenty questions, I answered some variation of “I’m just so tired.” And for the first time in a long time, a doctor trusted his gut above the diagnostics and was finally able to see what all others had been missing: I had late stage neurological Lyme disease.
I can’t count the number of red flags that I missed before I was finally diagnosed, but I distinctly remember the first two. They came in rapid succession – in fall 2011, I fell asleep at the wheel of my car, and two weeks later I ended up in the ER with what doctors vaguely identified as a bacterial infection. The next 5+ years were filled with seemingly unrelated medical problems. That bacterial infection came back yearly like clockwork, but I was also plagued by pain in my foot, then my back, then my knee. I had headaches and mono and was constantly complaining of a debilitating fatigue. Doctors told me that I put too much pressure on myself, that I drank too much diet coke, that I had anxiety and depression, that my ailments were my own fault or, even worse, in my head. By February 2016, I was not only effectively bedridden but also had lost a lot of cognitive function. Though I used to love getting lost in books, I suddenly struggled to even read a restaurant menu and, in the instances that I could comprehend the words, I was unable to recall them even seconds later. My body and my brain had been besieged by bugs, and I could do nothing but sit back and watch.
With my diagnosis came immediate relief, but that relief was all too temporary. Lyme disease felt like the answer I had been waiting for, but with the woeful lack of research and understanding I soon realized that a Lyme diagnosis didn’t win me any battles, it only redirected me towards new ones. Even though both my ELISA and Western Blot tests came back positive along with a whole host of co-infections, the campus medical center still denied that I had Lyme disease at all. For the doctors that did trust the diagnosis, there was absolutely no standard of care. This left me, a very sick patient with absolutely no medical experience, to make far too many decisions for myself based on very little experimental evidence. I’ve always thought in very binary terms –black and white, ones and zeros, on and off – but I found myself navigating a sea of unfamiliar grey space. I settled on a treatment protocol that was meant to address the disease aggressively, even though that meant taking 54 pills and supplements daily as well as self-administering IV antibiotics 3-7 times daily through a PICC line in my right arm. I decided that all of this would be worth it because it would allow me to heal in time for graduation and the start date of my new job. All I desperately wanted was to be able to resume the life that I had worked so hard to plan for myself.
Now, a year out from that goal date, I am still constantly being redirected towards new battles. Because my disease went undiagnosed for so long, my immune system couldn’t handle even the normal environmental toxins that it was exposed to. In addition to my multiple systemic infectious diseases, I am now fighting chronic active Epstein-Barr Virus, heavy metal poisoning, and mold toxicity. I’m not where I expected to be and I’m certainly not where I had hoped to be, but I am working every minute to give my body the tools to get on the winning side of this fight.
In my practice yesterday, I was reminded that the yogis define ignorance as mistaking impermanence for permanence. Just like my brain searched for the clear path of treatment last year, it also craved some level of permanence in my life: a permanent job, a permanent apartment, some semblance of stability that would make me feel normal. What I struggled to realize for far too long is that this permanence is not always positive, and it definitely should not have been something for which I yearned. The constant IVs and doctors appointments are impermanent, but more importantly, this illness is too. After a year and a half of treatment, I finally have minutes in most days where I feel healthy, where some temporary excitement or joy allows me to escape my struggle. And when the pain comes back, I find myself more able to remember that it is impermanent, that it will leave again, and maybe even for longer next time. Those minutes may string together to create hours, and one day I’ll go to bed and realize that, for the first time since high school, I had no pain. I look forward to that day with my whole heart, but until then, embracing the impermanence is the smartest thing I can possibly do for myself.
Instead of thinking about being sick, I am focused now on trying to get strong. The funny thing is, I didn’t know how many kinds of strength there were until I had to go seek out each one individually. From each of the people close to me, I borrow a bit of their own variety when I need it most: physical strength from my indefatigable puppy, the strength to choose happiness from my friends, understanding and compassion from my fellow Lymies, and an indomitable will from my parents.
When I surround myself with people and places that inspire so much strength in me, I have no doubt that my immune system will catch on soon, too.