I have Lyme. I’d like to not have it anymore. I also just want cake.
A few years ago, freshly sick and unsure why, I laid in bed one day curled in a ball enduring the disharmony and dissonance that was wracking my body and my brain. During this moment, in my periphery, I hallucinated a person walking into my room and towards me and then dumping an obscene amount of orange prescription pill bottles onto me. So real was the plastic, slightly opaque orange sea falling on to me, sound and all, that I reflexively gasped and jumped to get away. And then it was gone. The reality of my illness however, never left.
Let me rewind. The day my life changed forever was warm and it was sunny and it was June. It was already a day of import to me as it was the anniversary of my brother’s death. In a way, it became the day of my own death too, at least for many parts of me. It began like any other summer day, and despite the fact that the rug wasn’t pulled out from under me until nearly midnight, I still remember all of its proceeding hours… retroactively imprinted on my mind forever. Just as I recall the day my brother died and all of the hours spent living a normal day until it wasn’t. Traversing the grand scale of health to utter infirmity in under twelve hours will do that to you, I suppose. I woke up energized. I skipped off to the gym. I went to work. I was living, and then suddenly I wasn’t. I remember curling myself into a ball in the passenger seat of our car while D rushed me to the Emergency Room in the dark of night. I fought my brain to stay conscious the entire time. I couldn’t feel my leg. My heart was no longer beating rhythmically. And then I was hooked up to machines and there was talk of stroke and symptoms not making sense. I was wheeled off to scans and injected with dyes to look for brain bleeds. Ultimately, I was sent home and told I was well. But I wasn’t. And I never recovered. In fact, I further descended over the next few days into agony and terror I didn’t know a human body was capable of.
Over the next few weeks I declined so severely that I had already decided I was not going to live to see the end of the year. I was sad about that, I didn’t tell anyone that, but I was accepting it. I wouldn’t know for another seven months – almost to the end of the year I did not think I would outlive – that I was riddled with infections that had gnawed their way into my brain. Currently, it will soon be three years since that bizarre hallucination during a flare of agonizing internal chaos. Looking back, I can’t help but think about how funny and strange it was… it was downright prophetic.
It was Dr. J in my hallucination. I mean, it wasn’t, but it was. You know? And just like I flipped out and scrambled to escape the mountain of tumbling pill bottles, I was downright terrified of seeing this doctor known for his aggressive approaches. I was downright terrified of the very thing that would end up saving me. According to their notes, my initial presentation was described as “frail”, “weak”, and “shows difficulty breathing”. I remember being diagnosed with Lyme and several other words that I knew were dangerous. Words like “encephalitis”, “mononeuritis multiplex”, “dysautonomia”, “seizure equivalents”, “hypokalemia”, “cholecystitis”, “dysphagia”, and “clonus”, to name a few.
And thus Dr. J. began to slowly pour orange pill bottles over me.
Orange pill bottles, PICC lines, IV bags of all sorts mixed with antibiotic dosages suitable for an elephant, Hydration IV bags with electrolytes, plastic syringes of saline and heparin, medications to make me comfortable and medications that killed bacteria, medications to control seizures and medications that did collateral damage. Just a lot, of medications. I spent my first year with a tube in my chest infusing medications up to six hours each day. I feel quite comfortable saying this was the most difficult thing I’ve ever done. Physically, emotionally… spiritually. Physically, treatment made me much worse. I have no concerns about sensitivity in relating it to chemo. I couldn’t keep food down. I lost a lot of my hair. I was bed-bound. I was in pain. Encephalitis continued to rage and nerves were damaged. My body revolted over every infusion. I remember one treatment round in particular my face was turning blue and purple from capillary damage due to incessant vomiting. I couldn’t lift myself off the bathroom floor. I felt like I would not survive one more infusion. Come morning, I resolved, I was going to call my doctor and ask permission to stop. I was going to tell them I couldn’t do it anymore. They told me to keep going. They saved me from myself and my weakness. And so I kept going. Memories of this year swirl and fold on itself like dough in a bread mixer, so drugged and distorted the world felt to my constantly misfiring brain. My mantra during this time was “I can’t go on. I’ll go on”. Many have asked me when I started to see improvement, and I can honestly tell you nothing improved worthy of note until at least a year of this hell. This fact is where I could go on and on about how psychologically trying that year was. This is where I could go on about how this tested every ounce of my spirit.
Exactly one year minus two days to the start of my Lyme treatment, the tubes that had occupied my chest for a year were removed. This second year I would continue to undergo rounds of treatment but I no longer needed them intravenously. Year two was full of ups and downs, breakthroughs and fall backs, hopes given and hopes lost. Subtly, progress began to be measurable; measurable over months but still measurable. This was a difficult year, differently. I began to regain my wits about me. I began to cognitively improve and with that blessing, a curse also came as I could now think and process and more strongly hope and wish and dream. I would be able to dream less for even a brief relief from acute crisis and more fervently for health I was still so far from regaining. It is a much more exhausting and drawn out hope. Not every second was a crisis anymore. Gone were the days of ER visits or hearing D’s concerned voice seemingly so far away urging me to BREATH during every seizure. With this second year, I had more time to sit and think about how useless I felt and the amount of time passing while I felt this way. Treatment fatigue also began to more seriously set in. Long-suffering , given a run for its money during year one, really began to grow faint year two. I feel like this is where a lot of people choose to give up. They say they can’t do it anymore. They decide to believe this is as good as they are going to get. I’m certainly not here to tell anyone they are wrong when they choose that, we each have that beautiful freedom of personal choice. But, had I given up during this time, I would have missed out on so much further progress that I had made and am still making. Lyme does two things to a person. It has the extraordinary power to take you far beyond the point of what you believed a body can endure, without killing you, no matter how often you beg it to. And to Lyme, that’s not enough. It almost always takes ten times as long to heal from Lyme as you believe it will. Endure until the moment every ounce of your being wants to walk away, and then go on. Do this on repeat. Do this for years.
A few days ago, in honor of my two year treatment anniversary, the anniversary of the beginning of the end, I pulled out all of my medication empties I had saved since my very first dose. Four giant Hefty bags worth of treatment representing an out-of-pocket cost six figures long. My intention was to finally throw them out. And not surprisingly, it was kind of hard for me. Almost three years ago when my life was stolen and replaced, it was replaced with this… with Lyme and treatment, illness and medications. It seems a bit ridiculous, but I felt like throwing away all of these things before I had moved on in life would leave me with some sort of emptiness I didn’t want. I’m not to a place yet where I can say I’ve replaced this temporary Lyme identity with a new one, birthed from rediscovered health and reinvention. We like to hold on to things don’t we? Even unpleasant things. So I gave myself a moment with them. I dumped them all out and sifted through them. I worked hard to process the discomfort and hell that came from each empty orange bottle or IV bag. I mean, I totally failed, but I tried. As I sat there, amidst the fulfillment of my prophetic hallucination, I couldn’t help but think how frequently the things that often scare us the most are the very doors to blessing and progression of self. Stepping into terrifying unknowns can be such catalysts for amazing experiences. A concept you’ve heard before, but in application seems to settle on your soul much more forcefully so. And with that thought, I said goodbye to my empties.
I went to hear a woman speak last night, the daughter of a past prophet in our Church. She spoke on transitions. So frequently we associate transitions with grief, and it’s true, so many are the product of the death of something. However, she gave me a beautiful metaphor to enrich my perspective of these losses. She spoke of the sun and how as it sets… as it’s buried beneath the horizon marking the death of a day, the refracted light it exudes is stunningly beautiful. And likewise with each sunrise that dispels the night. Called by photographers “the magic hour”, these transition moments for the sun can be the same for us and ours. Looking back over my treatment experience, as my former life fell from view and plunged me into a darkness I would have never deemed myself ready for, I can’t help but think of it as my own “magic hour” now. While I was suffering and grasping and reaching and pushing myself beyond my limits, something was happening beneath my exterior and beyond my awareness far beyond physical healing. I don’t know yet the full extent of it, where it started or when it will end, but reinvention began. Yes, there was grief, but there always will be as your suns fall from the sky and mark the death of a specific period of your life, but not without some magic. It is never without magic. Eventually, the sun will rise again to the peak of midday and illuminate all of the beautiful changes wrought upon you during the night.
In closing, as I reflect on these past few years, here’s to my crazy hallucination that came true. Here’s to two years of Lyme treatment conquered. Here’s to embracing loss, struggle, pain, and all of the agents that afflict one hard enough to push one towards rebirth.Here’s to the beauty of transitions. And here’s to that magic hour.
Sidenote: in an effort to soothe my frantic mind when I first became ill my medically brilliant brother assured me “it is hard to kill the human”. The body is wired to survive incredible things. What I’m trying to say is LOOK AT EVERYTHING MY BODY HANDLED. The body is amazing. /Endnote.