Will There be Cake?

I have Lyme. I’d like to not have it anymore. I also just want cake.

Two Years…

 

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.

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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.

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26 comments on “Two Years…

  1. Anonymous
    July 23, 2016

    I’m gonna show this to all my doctors who have ignored me about my pain and symptoms after all there testing has come back negative .. Some say it’s anxiety and anxiety can do crazy things .. I’m sure it can but not like the ones you and I have .. The others say it’s a conversion disorder .. No it’s not I say to them ! Doctor says well the brain is powerful thing ! I agree .. But I’m not stupid and I know for 100% I have Lyme .. I lived on 150acre farm since I was 11 and I’m now 37 .. I’ve hunted deer – elk – bear in the mountains since I was 12 .. I carry the deer out for miles at times on my shoulders the chance of me being bit are extremally high .. I had all those animals living in my back yard for years on the farm .. Grass was tall on 50acers of it where they would sleep and eat .. I mow that same field and walk it all year round .. But no even with living on a farm full of critters and field mice that my cat brings into the house and all my symptoms and all my negative test on what they thought it was they won’t treat Lyme .. With time wasted and things getting worse and getting nowhere with these doctors I finnaly found one who asked my symptoms and said right off the bat sounds like 2stage limb .. Now getting a test done through Iginix .. My aunt has Lyme took her two years and multibal test for Lyme before going through iginix and getting a positive back .. She was on all kinds of meds before this but none for what she a actully had . Anxiety – depression – Lerica – and many others just like myself .. I tried to explain my symtoms they way you listed them and man I was labeled crazy real fast .. I just want to thank you for your story it’s made me feel better knowing I’m not alone .. For while I was thinking man maybe Iam crazy !! But I wouldn’t nor couldn’t except that for all my problems .. I’ve researhed Lyme for awhile now and my symptoms are all there even ones you listed that aren’t when you google Lyme .. Been checked for everything else and ms I can’t remember how may times .. So many I was thinking get over it I don’t have it move to the next dam thing .. Oh they did and did again and again .. They don’t like Lyme or even the word Lyme .. But they love my money and giving me Meds for things I don’t have and making appointment just to have me come in and ask how I feel just to say oh ok well come back next month and let’s do another follow up .. They don’t care about us where just a $ to them ! Sometimes I wonder why I pay for health care because I never see the care .. But I’m hoping my new doctor will hear me ! He did bring up Lyme on his own and said you don’t have a conversion disorder and even laughed .. Thing is I don’t want to have Lyme but a big part of me about 97% does just so I can finnaly no what the hell is going on ! And well to wright a nice letter to all the ones who said I was crazy 😠 I bealive in my heart 100% I do have it and I’m even gonna frame the test results on the wall with a smile on my face even if I’m having a lyme moment .. Thanks you I feel more peace after reading your story you will never know just how much that meant to me .. Ryan

    Like

    • tarathackeray
      July 23, 2016

      Ryan, you remind me of myself! I was labeled with anxiety as well and deep down (after much personal research) I felt it was lyme – and dreaded that it was Lyme. I hope you can get the validation and answers you need! Even if igenex doesn’t give you a positive it wouldn’t hurt to pursue Lyme regardless. I didn’t turn back a positive Lyme test until 8 months in to treatment. If you’ve ruled everything else out, follow your gut. Best of luck to you, I know your frustrations!

      Like

  2. Pingback: There’ll Be Sad Songs – Part 2 (Update on Jen) | memoirs of a gay shhh . . . ah.

  3. roadhouse41
    April 29, 2016

    When I first started to acquaint myself with Lyme, I watched Under Our Skin, and another Youtube video about this young woman and her boyfriend — I watched all the effort that this disease entails and I just thought…wow. Look at everything they had to do, and they made it.

    Keyword is “they.”

    I don’t have anyone to drive me to appointments, or to tell me to breathe.

    Then I look at all those pill bottles on your bed and I feel like I’m looking at a woman lying on a Cadillac or a luxury yacht or some fantasy unattainable item. Dr. J’s ministrations, the coherence of family and friends, a loving, attentive partner,all those who scurried behind the scenes to make travel connections and payments and plans and arrangements for Appearances — the center of it being Tara Thackeray’s very existence and her ultimate success ( and of course she’s fantastically good-looking) — well it’s sort of like being the PopStar of Lyme Disease.

    Please realize that while your writing is amazing and your story is intense, there are lots of people out here who are not as fortunate as you are in various dimensions. For one thing, I’ve seen a hundred gofundme pages now with desperate pleas from whole families struck down who are looking for assistance to buy basic supplements or one bottle of basic antibiotics at a price that has risen seven thousand percent. There is a woman in tennessee who has no money and one kid and no regular doctor will treat her even though she’s come down with a terrible, isolating dystonia and apraxia so she can’t go to her job anymore. She lives out in the woods, she’s got no one. But she’s got Lyme and she is very afraid.

    Thousands. Thousands like this, with no one to help. Paralyzed with uncertainty and exhaustion or hell, just plain paralyzed.

    I’m not trying to be mean but we are talking about life and death here. Mobility. Activities of Daily Living. Work Performance. Identity and Survival. I know you’re proud of your accomplishment but your photo made me wonder if people who are less rich, beautiful and lucky; do not have the Cadillac or the entourage have any hope in hell of getting better too.

    Like

    • tarathackeray
      April 29, 2016

      Thank you for this comment. I’ve put quite a bit of effort into thinking about how to respond. First of all, please know I am well aware that tens of thousands do not have the means they need to treat their illnesses. I have many friends who just don’t have options… friends in wheelchairs, crippled friends, and friends fighting every day for their life – surviving one more day at a time. I think about them every day. In fact, the great disparity between various sufferers of Lyme is something constantly on my mind. Of course, this IS life and death. I hoped that has come across in my writing on some of my more serious posts, because I certainly experienced it. And because of that, can justifiably ache for those trapped in it. It is incomprehensible to me.

      I can assure you I’m no popstar and did not spend my treatment years being pampered. My life is very average. Behind the scenes was stressful and ugly and the lengths taken to find the resources and money is something I don’t talk about. I’m not mentioning this to try to say my experience was just like yours, or like those who never can secure the means for treatment… but like you said, the efforts this disease entails are nothing short of herculean no matter the economic or familial status. It was not my intention at all to brag with this post. I wrote it with the hopes of educating those who don’t understand, haven’t experienced, or will never come face to face with this disease. I wrote it to encourage those, emptied of all hope or long-suffering, to keep going and not quit treatment. I wrote it to show others that long-term antibiotic therapy is not the evil here, Lyme is. I wrote it for every other reason but to brag. I do not deserve wellness any more than your friend from Tennessee, or any body for that matter. But does the cancer survivor not feel any less grateful for surviving simply because another did not? Because I’m recovering, I’ve made it my mission that should I remain involved in the Lyme community, that I do so to spread awareness and hope, to bring laughter to those suffering, and to help those who continue to suffer by spreading encouragement… that there is always reason to hope. To me, that is the only way the world will begin to take notice of those afflicted with Lyme and left behind. If enough can survive and call attention to those who aren’t, hopefully someday treatments will be covered and more can be helped and less will become ill in the first place.

      Again, thank you for commenting, your voice needs to be heard. Many blessings ❤

      Like

      • essanay
        April 29, 2016

        We have the same outlook. I also believe in long term antibiotic treatment and I don’t plan to stop treating no matter what it takes; a lifetime — fine. The thing I wanted to get across I guess was my impression when I saw the image.

        You don’t need to apologize for getting better or deciding on the Cadillac. You’re not even required to help the Lyme community if that’s not in your cards.

        But there are cheaper ways to do it; there *is* a way through to get there even if it’s local or oral;without having to go to Germany or Washington DC. All I meant to express was that the image itself makes healing look like something for the privileged.

        But otherwise, you have every reason to be proud of yourself, and grateful, and blessed. 🙂

        Like

  4. marian
    April 28, 2016

    You’re such a talented writer. Bless your heart! I just flew into washington dc to see the same Dr. I’ve come all the way from Australia as i am so desperate.
    We have or had very similar neurological symptoms and i am terrified. Terrified of remaining ill.
    It’s so hard. My son Isaiah is what keeps me fighting when most days i want to just die.
    The anxiety is torture.
    Anyway I’m looking forwatd to your next blog.
    Marian

    Like

    • tarathackeray
      April 28, 2016

      Marian, you can do this! You’ll get through it and so glad you keep fighting. You are in great hands ❤️

      Like

  5. yessington
    April 27, 2016

    This took a lot of courage to write. And it’s beautiful writing at that! Having Lyme makes me think about my mortality a lot. Some times, I cry for no reason other than knowing a nice moment is going to end, because I’ve become aware of endings more than ever in my life. But with endings are new beginning, like the sun rising. The end of each day is a death, I like that.

    Like

    • tarathackeray
      April 27, 2016

      I agree! But with the same breath, you can say a bad moment will end too. I like to focus on that. 🙂

      Like

  6. Jillian
    April 26, 2016

    Tara, I can’t thank u enough for doing what u do! I’m just finishing my first IV month with Dr J, and even though I know there is so much more to endure on this Lyme journey, ur beautiful, raw and truthful words are so helpful and inspiring. I feel so lucky to have stumbled upon your blog. Cheers to better health!

    Liked by 1 person

    • tarathackeray
      April 26, 2016

      Thank you! You are great hands with him. You will do amazing. 😊

      Like

  7. Nancy
    April 26, 2016

    You have a beautiful way with words. More importantly your words are helping those who are living this nightmare. I have been unwell for more than a decade. My sister Bettyann who also is a “Lymie” showed up at my door and took me to her LLMD. She saved my life. I am just staring to go into remission after 2 years of treatment. I am very blessed that my LLMD was smart enough to treat me even though my first Igenex test was negitive. Months into treatment i was retested and i had 14 strains of Lyme plus coinfections and viruses. My sister and I are both RN’s yet we needed to educate ourselves since so many in the medical field are so uneducated in diagnosing,caring for and treating those with Lyme. It makes me angry that the majority of the medical community believes that ” Chronic Lyme “does not exist when i (and many others)are living proof that it does. It is maddening so i choose not to focus on the negative but rather look for the good. It is good that we help each other as best we can. Your story is good in that so many see themselves in it and know they are not alone. Thank you & God bless.

    Liked by 1 person

    • tarathackeray
      April 26, 2016

      So glad you could get treatment and that you had a great sister to help. Focusing on the positive is so essential with this isn’t it. Thanks so much for your comment!

      Like

  8. Sara
    April 25, 2016

    This brought me to tears. My own personal struggle is so similar. The pain of enduring not only the disease but the pain of treatment and the end of one part of my life and the beginning of a new one. I see the sunrise differently now…I feel the sunset differently now. I have endured and experienced the power of the human body and of the holy spirit and my outlook on life will never be the same. I hate this disease……more than anything. Yet it has made me appreciate life, understand true pain and isolation, and shown me what really matters. You are a beautiful writer, thank you for touching me with your words!!

    Like

  9. Anonymous
    April 25, 2016

    This brought me to tears. My own personal struggle is so similar. The pain of enduring not only the disease but the pain of treatment and the end of one part of my life and the beginning of a new one. I see the sunrise differently now…I feel the sunset differently now. I have endured and experienced the power of the human body and of the holy spirit and my outlook on life will never be the same. I hate this disease……more than anything. Yet it has made me appreciate life, understand true pain and isolation, and shown me what really matters. You are a beautiful writer, thank you for touching me with your words!!

    Liked by 1 person

    • tarathackeray
      April 25, 2016

      Oh bless you! I understand you completely. You are so welcome. Thank you for the comment. It was equally beautiful. ❤️

      Like

  10. Tony Sorensen
    April 25, 2016

    That’s a pretty big cache of pill bottles, syringes and IV bags. You inspired me the first time I read your story, I hope you continue to heal in body, mind and soul.

    Liked by 1 person

  11. Ted Bryan
    April 25, 2016

    Tara, you are an amazing person and without even knowing it you have helped me tremendously, just by being able to write so beautiful and with so much meaning for those of us in the same boat. It gives me the strength to keep going knowing that there are other real people who once were active and energetic that now have the same issues. I wish I could put my feelings and stories into words as well as you and someday with a little luck my mind will function enough to share my stories as well as you have written so many times. Thank you and God bless you

    Liked by 1 person

    • tarathackeray
      April 25, 2016

      Wow thanks so much. I’m always amazed by how many stories are just like mine too. I’m sure you will be able to do all you hope to one day. Thanks for your comment.

      Like

  12. Mary Beth Thakar
    April 25, 2016

    Good end note — the body is amazing!

    Liked by 1 person

  13. Gail
    April 25, 2016

    I remember the morning you shared that “hallucination” with me. I remember the box where all the empty medication bags and bottles went. I remember when the first boxed filled wondering how you were going to go on, that this was still the beginning of treatment. It is both tangible evidence of the strength of the body, and the determination of your spirit. I would be sorry to throw out those orange bottles too. They are a living testament.

    Liked by 1 person

    • tarathackeray
      April 25, 2016

      It feels like throwing away trophies.

      Like

      • Gail
        April 25, 2016

        make a sculpture,

        Like

      • GMD
        April 25, 2016

        All those orange bottles are ugly. I have my collection, in cabinets and closets. I get judged by family and friends by the bottles. They call me the pill mom, the pill friend, the pill sister, the pill person. They have no ideas what is behind them all. I am so tired of being judged and still feeling rotten, tortured. And I cannot afford treatment anymore. The orange bottles, IVs are just memories of better times. They don’t understand how much I miss the IVs and pills because they kept me “normal” for so long. Now, no job, no teeth, so i don’t look so good anymore either. Still, I am the “pill” person. One daughter said to just quit it all and let my body fix itself. Judgmental ignorance!!! People, friends have no idea what it is like. They don’t even recognize when it is destroying their own bodies, until it destroys their own lives so completely. They compensate just like I did for so long. Treatment helps and is good. Early treatment is much better. Sorry for the rambling.

        Like

      • tarathackeray
        April 25, 2016

        I’ve come to embrace my “pill person” status. Like you, they represent an ultimately positive thing for me. I think of you often and wish things were better for you, but always glad to hear your comments.

        Like

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Playing puppy jail with this one while cleaning house. Can we be any more melodramatic @sal_guy ? 😆

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