I have Lyme. I’d like to not have it anymore. I also just want cake.
I really don’t know how to start this post. There are a ton of these things and thoughts and things that escapes language in my mind that I want to spill out in this empty white space but I can’t. These thoughts just slapped me in the face 15 minutes ago while I was pouring myself in to a series on Netflix and before it left me I wanted to get it down. You will find no inspirational quotes or images or funny things. Just text. Get over it.
When I first fell ill my entire focus was on finding the cause and ending my suffering. It was quite selfish, if you think about it. But, born of necessity. It was a normal reaction. A instinctual reaction. Everything became about me. Suffering, all suffering, begs it’s victim’s attention. Physical suffering, most especially, has the power to hi-jack your very being into purely self-centered survival. These first weeks were weeks where I sobbed a lot. I prayed a lot and begged a lot. I felt I was mature enough at the time to never try to bargain with God (that I can remember), but I did beg and beg to learn whatever it was that I was supposed to learn from this experience so that it would end. I knew trials and challenges come to help us grow. But, I naively thought I could learn them on my time-frame. Looking back, my prayers were selfish, although I thought myself spiritually mature and I believed it showed my willingness to put myself on the altar at the time.
A few months later, I stopped the begging. I had become familiar with my symptoms and started focusing on searching for the cause of my illness, myself. At this point many doctors and specialists had let me down. I also, out of necessity, began to focus more on coping. Coping with the loss and the death of myself in a way. I began withdrawing from my life in pieces… work… socially… church attendance… spiritually. In part I had to, my physical abilities were dropping like flies. But also, the very depth of me, who I am, my spirit, began to shrink from my loss, my unknown prognosis, and most of all, the limitations of expression my physical body imposed on me. I couldn’t form coherent thoughts and sentences to pray with. I couldn’t read. I couldn’t drive. Looking back I still view this as selfish. My husband suffered from this. I know he began to feel as obsolete as much as my prior life had become. Many will say this was inevitable, and true, I couldn’t help what was happening to me. I’m just trying to point out how much life became all about me, while I was oblivious to it at the time. I look back and I view myself as a girl, thrown in to the middle of the ocean and told to swim without knowing the distance to shore. She did what she could. She swam and swam and many times, would just tread water, lost in the mantra of self-centered survival. I was an infant in relation to this disease. A complete infant and nowhere near learning what God had in store for me to learn through the experience. Actually, nowhere near even opening up a dialogue with Him at all. Despite His (my?) silence, despite my continually worsening health with no answers, and no relief, I never once became angry at Him. I have always been like that so I don’t say this to highlight myself as some beacon of faith. I do this with everyone. I am not a resentful person. But I do become despondent. And I did that a lot. My courage slipped through my fingers like sand at a constant rate during this difficult time of uknowns.
A few months after that, with a diagnosis in hand, I began a treatment protocol for my illness. So at this point Tara has been swimming in the ocean for six months now and suddenly what goes from just endless cold and choppy waters to a full on Cat 5 hurricane. As many with Lyme disease know, treatment for Lyme is often worse than the disease itself. I very quickly experienced the rapid loss of whatever was left of my life in the span of five weeks. Self-centered survival took itself (selfishly) up about 50 notches and I simply became this being that only reacted to circumstances. I had few thoughts. I thought very little of anything other than enduring. If I was blessed with a quiet moment in my body, it stayed quiet in my head as well. I had one emotion for much of that year, and it wasn’t something I can define but through the words “I can’t go on, I’ll go on”. Many times it was as if my soul had entered this cocoon while my body endured the beatings treatment assaulted me with. This went on for over a year. There was very little of “me” to engage with. I had good days here and there where little flashes of myself would flicker and my husband and parents would take notice and it was happy. But as a whole, the year was a blur of war. A blur of pushing myself over and over to face my fears, to face the illness, to willingly dose myself with powerful meds knowing full well the suffering they would cause a few hours later. A year of this. A whole year.
It’s easy to read that and skim it and go on to the next sentence. I get that. And again, I’m not pausing here to highlight how awesome I was about any of it, but I lived it and I still can’t wrap my head around it. An entire year of almost a foot of tubing in my chest. Day after day of getting beat up and run over by trains and semi-trucks and dragging myself around the bathroom floor or stuck on a couch rocking back and forth trying to endure pain or the horrors of a fried nervous system. Most don’t really get what is involved with things like a fried nervous system. Ask anyone who went cold turkey on a benzodiazpine addiction what withdrawal was like. Or alcohol withdrawals. It is similar in many respects, symptomatically. It was suffering I never knew existed. And I truly don’t know who it was that accomplished it. Because it doesn’t sound like anything I would have been able to endure for almost 365 days. A day is long when you’re bored. A day is long when you’re tired or your back aches. A day is long when you are sad or when you are grieving. A day is really long when you are deathly ill. How I even made it to day 100 is a miracle to me. Yes, looking back, I still can’t wrap my head around it.
Coming out of the worst of it, I am beginning to see what my newly sick self had begged for. I am beginning to see a few of the things I needed to learn. And, I find them SO valuable that I stopped praying for my illness to end a while ago and am now just praying that I don’t lose these new things I’ve learned. My illness has become secondary. I know it will end in due time. I’m no longer worried about that, because at some point along the way, I changed. It was under the radar, under my nose, apart from my awareness. I have this beautiful friend Paula who has felt similar changes. I love how she phrased it once while we were talking. I don’t recall her exact words so I paraphrase, but speaking of the brutality of Lyme treatment and the magic of recovery, she expressed something about how it was like “kill, kill, kill, and when the dust settled, I emerged like a shell-shocked butterfly”. Beautiful. But not quite aware.
In fact, I have spoken with several friends who are in the midst or near the tail end of their Lyme treatments who have felt of similar transformations. Not transformations of health, although that happened, but transformation of self. I spoke with one friend as I visited her in her home. I listened to her explain how this has changed her, how she is a new person, and, as I have found as I try to explain my own transformation, you reach the end of the capabilities of language and your eyes well up and you just weep. And as her tears fell mine did as well. Because I knew. I was eating lunch with another friend as we both shared our stories, and, both of our eyes watered too at a Zupas’ Cafe as we talked about the journeys we have taken. I know that I, personally, can not publicly or privately speak about my illness without shedding tears. They are not tears of sadness. I am not sad about what I went through and I know these wonderful women I’ve mentioned aren’t either. These are tears of amazement, of gratitude, of finding ourselves knowing recipients of the finer strings that exist within our souls that only experience, suffering, and endurance can unlock and play. Strings that spring forth the melodies of the greater beauty in this world and which its inhabitants hold. Melodies felt and not heard.
I guess I am still that shell-shocked butterfly – changed and standing all amazed at the change. It’s as if emotion has become a new language, and feeling – a new color. And the world is now full of new colors. I’m not talking your regular empathy. This is different. I knew fairly early that I had become far more emotional during my illness than before. But it was chaotic and unorganized and I chalked it up to just something I do for release when I’ve lived on the brink of my endurance level for an extended period of time. But as I’ve physically improved, as endurance has not required so much as it used to, my ability to empathize has turned in to its own sort of emerging butterfly. I realized this on Mother’s Day as I was sitting in church listening to a man standing at the podium talking about what his deceased mother had meant to him. As he talked, as he wept, and as I began to weep, I realized quite suddenly (like another slap in the face) that I was feeling his feelings. I know that sounds a lot like regular empathy, but to me, it is something deeper. Prior, empathy was this thing where I would see someone express an emotion and I would understand it only as I related it to my prior experience with that emotion. But unlike this man, my mother is alive and well. And my mother is different from his mother. Yet, I felt his feelings. His feelings. Not my interpretation of them. Not my feelings that his feelings made me feel. But his feelings that he feeled. Lots of feels going around. But none of them originally mine. Got it?
People send me messages about how strong I am or how well I express things relating to this disease, or what courage I have or faith or other like noble things. However, I feel completely blind to those things, if they do exist within me. In my eyes, I was only the kid at the Pediatrician’s office who screamed bloody murder before his vaccine and all throughout his vaccine. I did not go in to this with a brave face. I am really good at hiding two things… symptoms and fear. And I hid mountains of fear. Love though, has since replaced fear. I tangibly feel all these emotions the world holds, that people hold, that the individual standing in front of me holds. I look at people and see this, and can not contain my compassion. I am moved by everything. I keep most of it hidden (ok I’m good at hiding three things) until the voice shakes and the nose runs and the tears fall in response. But it is suddenly a part of me. And I appreciate that so much. To me, God is a being who tangibly feels our feelings. He doesn’t just know our feelings, He feels our feelings. I want to be like God. I believe God was teaching me to be more like Himself. I had no idea the magnitude of what was possible for me to learn… cultivate… become, from this illness when I first knelt down and begged for that quick tutorial so the trial could pass. He will do so much more with you than you could ever conceive of for yourself. Now, I just need to learn how to stop hiding it and gain the courage to do something about it. I could be a much warmer person, admittedly.
As for my health, I still experience on average 10-15 symptoms a day. I am not better. I still have a long way to go. Nobody knows I’m suffering still unless I mention it, which I rarely do these days (second thing I am really good at hiding). And it’s not even something I have to suppress, I’m just focused more on other things. Self-centered survival has been replaced with outward-facing living. Life is too rich to be looking at myself all the time. My husband likes to joke that I am overly emotional but I hate to break it to him… I’m just growing more humane. The personal wars of extended suffering will do that to you. I have much more treatment to undergo, and I welcome the lessons they will hopefully continue to bring.
Now if you will excuse me, I need to prepare waffles for my husband tonight. He asked for them yesterday and I deeply felt his disappointment when I didn’t make it happen, even though he wouldn’t admit it. And even though it was only just waffles, my little heart broke. So he gets waffles. And cheesecake. Even though I can hardly stand the thought of looking at cake in my house without eating it, he gets cheesecake.
BUT, lucky for me, I’ll get to feel his feelings as he eats it.