BACKSTORY
Hi, everyone!
It all started four score and 17 years ago. I was a very healthy 19-year-old and was in the height of my running days. At the time, I was running about 25 miles/week and absolutely loving it. The summer before my junior year at Temple University, I went backpacking with my mom for her birthday in the Shenandoah Valley, and soon after I got sick. I didn’t put the timeline together until later, but I came down with flu-like symptoms about a week after the trip and then slowly started noticing changes in my body. (This is my best guess as to when I got Lyme Disease; I never had a bulls-eye rash so I don’t know for sure when I got it.) My first symptoms were difficulty breathing, stomach issues, headaches, fatigue, and trouble with my vision.
Welp, I made it to Manhattan Beach, California. I'm feeling all the colors of the rainbow as I start my time with Reactive -- a clinic here in LA that specializes in physical and occupational therapy for complex neurological conditions. It was an action-packed week on so many levels! My first PT session with Reactive was last Monday and I left that first day feeling total affirmation that I was in the right place with the right people. I want to get into all of it, but I'm gonna use this first post to give a little backstory for those who haven't been with me from the beginning.
The most distressing symptom early on was the fact that I couldn’t seem to keep my eyes open. My entire system was more tired than usual for sure, but the eye muscle fatigue felt especially pronounced and concerning. My eyes constantly wanted to cross and it seemed to mess with my whole sense of equilibrium. As a child, my left eye would sometimes cross and I always saw two red dots during the eye exam at school when I was only supposed to see one, but I was able to compensate for whatever weakness was there. The Lyme bacteria must have targeted that weakness and made it 10x worse. At the time, Lyme was nowhere on my radar and I didn't think of the possibility that something was happening on a neurological level.
I had to inform my teachers at Temple that although my eyes were closed, I was still listening -- ha! I'm sure they hadn't heard that one before. I could take in information, but only if I wasn't registering any visual cues; it was very strange. All of my senses were way heightened. At the time, I was also interning at Koresh Dance Company in Philly, taking free dance classes in exchange for work. I had finally decided to really focus on dance, which was my first love and passion in life. In fact, I think it was the onset of symptoms that inspired me to pursue dance more intentionally. Something in me knew my body was changing and I was trying to hold onto health with everything I had. But it was pretty distressing to realize that I could no longer follow choreography. I knew the moves, but I couldn't get my body to do it. I remember crying in the back of a dance studio, all blurry-eyed, realizing that I would need to take a very long pause from dancing. And running would soon follow.
I went to several eye doctors during that period and was eventually advised to get strabismus surgery to stitch the muscles in both eyes so they wouldn’t want to constantly cross, causing fatigue. In March of 2008 I got eye surgery, feeling totally desperate to fix whatever was happening to my body. But alas, we all know nothing is that simple!
The surgeon told me that I wouldn’t be in any pain when I woke up, but upon waking up from anesthesia my left eye was in severe pain. For about a week, I had trouble walking and felt like my body was even more out of sorts than it was before. Everything was confusing and scary. The best way to describe it was that I felt disoriented on a deep body-brain level. Like I didn’t know which way was up or down. And I was living with constant headaches. At one point, I even called the surgeon and asked if he could undo the stitches. He said he'd never been asked that before and was willing to do it, but I figured it could potentially cause more trauma or risk to my body so I let it be and hoped I’d eventually adjust.
During finals week, about two months after my surgery, I had an episode where my entire left side became so weak that I couldn’t walk. I was in the hospital for three days where they ran a bunch of tests, and expressed concern about it being MS. Nothing came back conclusive, so they discharged me with a referral to a neurologist. When I went to the neurologist, he tested me for Lyme Disease and it came back positive (which I am very grateful for, because not all Lyme diagnoses are so straight-forward). Since then, I have undergone various treatments for Lyme, both alternative therapies and long-term antibiotics. Between parasites in Bolivia and treatments for Lyme, my body has had more antibiotics pumped into it than anyone should have in ten lifetimes. I could write a book about what transpired between the diagnosis and now, but I will spare you of all the details.
The main point I want to get across in the retelling of this story is that somewhere along the way my wires got all crossed. My left and right side no longer worked as a team, the brain and body no longer worked as a team -- everything got disjointed and disoriented and dysregulated. I couldn't take in sensory information in the same way, I couldn't read or walk or do anything without confusion and...you get the idea. Just kinda exhausting to function, ya know? Whew, it's been fun.
As many of you know, I've made a ton of progress over the years. I never imagined I could finish school (the hugest miracle), support myself as a therapist, drive long distances, dance in my kitchen, and socialize in the way I'm able to now. But the reality is, the neuro-pathways in my brain are still kinda confused and stuck. I know this all sounds a bit strange, but it's kind of like someone giving you a different brain after 19 years. The team at Reactive has validated the role that Lyme and the eye surgery played in my functional symptoms. Functional means that it's a software problem in my brain -- not a hardware problem. I can explain more of what that looks like for me in the following posts.
I know that Reactive can't "fix" everything. My body has gone through a lot and may always be managing symptoms on some level. My goal is not to have a perfect body, because that's not realistic for any of us. My goal is not even to run again necessarily (though that would be an amazing byproduct!). My goal is to have a better understanding of what's happening, clearer signals from my brain to my body, more tools in my toolkit, and a decrease in symptoms (migraines, fatigue, sensory overwhelm, dizziness, pain). That being said, I think my goals will continue to unfold as the PTs help me connect some dots. They are still getting to know me and my needs, so it'll be interesting to see how things develop as the next three weeks progress. But I already feel so much less isolated in my body's experience.
Before I wrap this up, I wanted to share how I even heard about Reactive in the first place!
Before starting my own therapy practice this past fall, I worked for The Center for Growth in Philly. In addition to my individual work with clients, I also led a support group for people with chronic illness/chronic pain. My boss became interested in Functional Neurological Disorder (FND) and wanted me to see more clients with FND. She had one of the team members at Reactive present for our organization and I was extremely impressed with their comprehensive and compassionate approach. I was in no way thinking of coming out here to California for myself, but could totally relate to the symptoms and experiences that my FND clients talked about. One of my clients developed FND and had an abnormal gait that made it impossible for her to work. She was going to physical therapy at UPenn's FND clinic several times a week for months, but to no avail. Her physical therapist at Penn was convinced there was some unresolved emotional issue that was causing her abnormal movements. I was even beginning to wonder if maybe I was missing something as her therapist, but my gut was telling me that she just needed the right team of people. I ended up telling her about Reactive's program and, lo and behold, she made the cross country trip. When she got back, her gait was completely back to normal and she was able to return to work. I was truly in shock. That's when I began to think, hm...maybe I should check this place out!?
There is a lot misunderstanding surrounding FND and oftentimes medical providers can cause more distress to patients by focusing purely on the psychological aspect of it. While FND can be caused by trauma, it can also be caused by illness or injury. It has many faces and forms and needs to be treated individually, which is exactly what Reactive does. They listen to their patients, they figure out what's working and what isn't working, and they get creative. But more on all that soon -- thank you so much for reading this dissertation and for your support on this wild adventure!
Love to all,
Rebekah
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