Throughout the making of this film I have been reticent to talk much about my illness because I wanted the focus of the project to be about the life and identity altering effect of profound loss – any loss – something that everyone experiences at one point or another. But I’m realizing that my specific story about my specific illness is relevant and maybe even helpful. And people always ask about it anyway.
In October of 2003 I was dancing hard and reveling in the fact that I was living my passion. I was excited about opportunity and life and felt strong, resilient, independent, empowered, agile, enduring, physically precise and enchanted. I couldn’t imagine it any other way - until it all collapsed suddenly. It started with severe panic attacks and then prolonged anxiety and profound fatigue. Life as I knew it and the single most important aspect of it stopped – no more dancing or exercise of any kind for over a year. Many doctors’ appointments and vaguely comforting (though inaccurate) “diagnosis” and antidepressants ensued. I got somewhat better and started taking dance classes again, but would still experience sudden collapses of energy – like my puppet strings were suddenly cut. Something was still very wrong. So much grief, consternation and confusion (
“it is not just depression or delusion or a lack of will power”) that I wanted to scream “something is REALLY wrong!” Feelings of hopelessness, inadequacy and failure began creeping in and taking a stronghold where there was once confidence and calm.
But I maintained what looked like a normal, productive life for a while, still working full time. And then I got worse – a lot worse – and stopped working. I knew that I had to figure this thing out. Woozy spells, neuropathic pain and pressure in my face, mouth and throat, disabling headaches, “inner” trembling and weakness, circulation problems, continuing profound, deep fatigue and panic attacks that would take over my whole body. The worst part was the unpredictability of the symptomatic spells, making some days manageable and almost normal, and other days hell. I had always thought of myself as an extremely reliable person.
After a lot of researching and more doctors’ appointments, I finally found a diagnosis that seemed accurate: Lyme Disease. But what did that mean and what would happen next? Having an accurate diagnosis is a crucial first step, but it was only the beginning of what has been a very long and hard road. This discovery incited a whole new wave of some hope mixed with more loss and devastation. Was getting better really possible, or was I going to just limp along living a half life and die early? Was it possible to effectively treat a serious infection that had gone undiagnosed for two years? How would I be able to pay for any of the costly treatments? Would I ever be able to dance and move – an experience I considered a sacred savior - and soar like I had before? Would anybody love and want me now that I was so limited, damaged and unreliable? Would I be able to have spontaneous, carefree good ol’ fun or would I always have to be cautious and say “Sorry, I can’t do that?” Would I ever be able to work a normal job again, get a master’s degree, have kids, travel, be adventurous, be accomplished? The questions went on and on.
Lyme disease can be
acute or
chronic but the term “Chronic Lyme Disease” is extremely controversial and is refuted by much of mainstream medicine. Just another maddening political aspect to an already maddening experience of illness and self-doubt. However, those who have it know how impactful, real and complex it is. Once Lyme is chronic, it is no longer a single stealth bacterial infection, but a constellation of infections, hormonal imbalances, toxicities, autoimmune reactions, neurological problems, etc. Basically, your whole body goes out of whack, though it affects every person differently. It is so overwhelming that it can be hard to know what to treat first, and you often feel much worse before you feel any better. The process of treatment is truly like peeling away the layers of an onion and can take many years. It requires incredible persistence and patience and a strong network of loving supporters - something not everyone is lucky enough to have. Losing your faith entirely and only glimpsing the fleeting light of redemption is a cycle that is guaranteed. It requires that you be a warrior.
Here it is almost 2011 and I still supposedly have Lyme Disease and my life looks very different than it did eight years ago. I’ve been through many ups and downs, gains and losses, steps forward and steps backward. I have lost relationships and friendships. I had to move back in with my parents in order to afford my treatment. I have been through dozens of natural treatment protocols and 14 months of intravenous antibiotics. I have been in deep dark holes.
But now I am happy to say that I am doing relatively well. I live in my own apartment and am completing graduate school. I am working on creative projects like this film. I spend time with my loving friends and family. I am learning Argentine Tango and have become reacquainted with the joyful experience of God-flow that dance brings to me. And I feel gratitude for this difficult and wonderful life.
I am still somewhat fragile and operate at about 70%. If I get less than seven hours of sleep I cannot function properly. My threshold for over-stimulating environments, stress and crisis is much lower. Anxiety is never too far away. I don’t have the energy or stamina to go hiking or take long bike rides. For exercise, I go for short walks, short bike rides, and jump on my mini-trampoline instead. I still get bad headaches. Escalators, elevators and airplanes make me feel woozy. I can’t tolerate alcohol or other mood altering substances. I have food allergies and digestive ails. I still get waves of profound
unable-to-walk–up-the-stairs fatigue. I feel neuropathic tingles in my mouth and pressure in my face. Despite all this, I easily pass as perfectly healthy. I am far from symptom free, but I am beginning to trust myself and my body again.
Although I sometimes introduce myself as a “former” dancer, I still feel attached to my archetypal identity of A Dancer. Will I ever be OK with NOT labeling myself with that title at all? Is being a kinesthetically aware mover part of my very essence, inseparable from my very basic identity? I’m not sure, but more importantly, I have truly come to know myself – my authentic, deeply inward self – better than I ever have. I can feel a quiet surrendering in the places that have been wounded and have gained back some confidence in my self-worth and ability. Crisis and loss often do just that – force us to grow in ways we wouldn’t have otherwise. That is what this film,
Forms of Identification, is about - facing crisis and losing everything outward that we comfortably grasp onto, compelling us to plunge deep into the mystery, mayhem and majesty of our genuine, pure self.
- by Dancer/Choreographer Jessica Ingersoll-Cope
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