Will There be Cake?

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

“I have Come to Accept People’s Lack of Long Term Compassion”

If you read anything on the internet these days, you probably recognized my title. We are almost force-fed Yolanda Foster’s Lyme journey as literally everyone shares literally everything she says. But these words, as written in her most recent blog post, stuck to me like all the fibers of the entire world do during these dry winter months. Her words came on the heels of her divorce announcement after almost five years of marriage. Both had me wondering, nay pleading along with Kayla, a cute-as-can-be girl I only know through Facebook, does anything survive Lyme?

So, this is a thing. It’s a human nature thing. I’ve come to learn it (kicking and screaming), and you probably have too. Lyme is literally loss. They should call it Loss Pathosis, Dispossession Disease, the Bereavement Bug, Forced Forfeiture Disease. Joseph Jemsek, an AIDS-specialist-turned-Lyme-specialist spoke to this phenomenon of Lyme torture when speaking of the difference between the two illnesses. He said something to the effect of how AIDS patients want to live but they usually can’t. Lyme patients want to die but they usually can’t. Keep in mind his time spent with the AIDS population was in the early 80’s and into the 90’s where AIDS was mostly a death-sentence. He has spoken a great deal about how he has held the hands of many a dying and dismissed patient who, one by one, would slip from this life to the next. I have spoken about Lyme and loss before, so I don’t want to spend much time on it here, but suffice it to say, we deal intimately with loss every day in the Lyme world whether it be our own abilities, hobbies, careers, schooling, or spouses. Or, whether it be love, support, compassion, and mutual interests and understandings. But today is about my title and our desperation for compassion that lacks. And to come full circle in this paragraph, yes, this is a thing.

Without phrasing it in such a way that would make our loved ones and even our just liked ones look callous and cold, I want to agree with Mrs. Foster that yes, you do have to get yourself to a place where you can accept that most will struggle with long-term compassion for you. This is and isn’t malicious. Some do legitimately grow tired of it. There is no mistaking that. We can count on both hands all of the broken marriages we know lying in the wake of this disease. But frequently, the compassion wanes unintentionally. This form is simply human nature. We sickies are guilty of it too. Keep smelling a rose and you eventually can’t smell it. If it works that way for pleasurable things, it certainly works the other way around. But I’ll be darned if smelling the bad roses seems to last a little longer… amirite?

May I stand up for a second for them? It’s easy for us, on our end, to hold this compassion for others we so desperately want for ourselves. We understand a bit more of not just each other’s suffering, but other forms as well. Remember the you before Lyme? The you that didn’t even know you didn’t know of the kind of suffering you know now? Do you need to re-read that sentence? I’ll give you a minute…

Sooo, yeah, they don’t know. They see day after day what may or may not present as visible signs of illness. If signs are present, they don’t understand it. No matter how I try to fumble embarrassingly around words that do a terrible job of describing a seizure, no earthly soul but me will ever understand a “Tara seizure”. A burn victim can try to describe to me what getting burned alive feels like, and I still can’t fathom it simply from lack of experiencing it. They alone will live with that horror. And it’s not just that. Our loved ones live with a person who’s behavior screams “I can’t”, every day, for months and even years. It’s really hard to live with an “I can’t” person. No matter how visible the illness. I’m not excusing those who chose to cease compassion and leave the situation. But I’m not totally poo-poo’ing and tsk-tsk’ing those who, over time, sorta grow a little used to the new normal, probably much faster than you are, simply because it is human nature to adapt. It’s also human nature to grow used to things that prior produced an emotional, physical, or otherwise visceral reaction. Since I brought up seizures, I remember the fear and confusion in my family’s faces my first couple of seizures. Then, after a few more, it turned to routine. Not for me, never for me, but yes, for them. Guys, it takes effort to choose to go against the grain of human nature and maintain those initial feelings and pangs of empathy. Some days our loved ones have the energy, some days they don’t.

I recently watched a YouTube video made by a man discussing some of the things that have helped him heal from Lyme. It was an hour long, and for me, most of it was status quo Lyme things. But he said something at the very end that, again, like the stinkin fabric softener sheet I found on the inside of my pajama pants this morning, stuck to me and wouldn’t leave. I paraphrase, but he basically said “No one is every going to understand you. You have to be okay with that”. So… I then cried like a little idiot. I cried like I had lost someone. I knew what he said was true. I have known it. But I’ve been living in deep denial about it because it is also human nature to long to be understood. Despite my family’s support, despite their patience and all they have done to allow me my illness as it is and to allow me my treatment as I need it, despite my friends with Lyme who even share many of my symptoms, I am still stranded alone on this island, destitute of true mutual experience and empathetic sensitivities. This single YouTuber took all of the understanding versions of my loved ones I imagined in my head to have someday, and he killed them. With one sentence, he killed them. But, it needed to happen. Because it was truth. I am still working on being okay with that.

So here we are, faced with the principle that no one will ever truly understand you as a victim of this disease and that long-term compassion from others may wane. What to do when we’ve spent so much of our energy furnishing our circumstances with the love and understanding we try to wring and fleece and draw out from those around us to varying levels of success? As if I attached strings to my family (and especially my husband) and I just pulled and pulled on those strings trying to get instant understanding from them as needed. Always to be left disappointed. I know you aren’t getting what you want yet either. You aren’t because you can’t. As Yolanda Foster has discovered, long-term compassion is not human. In bits and pieces it can be, but never a steady stream. So I know, somewhere deep in your soul, you are left wanting. You are lonely. You are longing. We have to be able to speak the title of this post, and mean it.

How? Cake blog lady, like how. This is only my opinion. I’m certainly not the model of success for this. But stop putting the job of making you feel better on others. It’s a tremendous responsibility to impose on someone not to mention kind of impossible. Their compassions, their love and understandings as they can give, they soothe in the moment. And yes, they are absolutely crucial to getting through the horrors of this illness. But if you’re like me, an acute moment of pain can blow in like a storm and even though you can be soothed through it by the comforts of another, the crisis dissipates and the person resumes their activities, you still find yourself still sitting there like crap, I still have Lyme. Cue straight-faced and unfulfilled emoji. The true energy to persevere, to obtain peace over your predicament, to accept your new world, will only come from within. I’ve seen in many the complete inability to live independently. Not like, live on your own takin’ care of business type independence. But emotionally independent. Whyyy guys can’t some of you do this? Heal from your codependent relationships and master your own helm. A unique peace comes when you take back the power of your own happiness. Even if happiness isn’t something you find possible right now, just take back at least the power of your own contentment. Your power to be “okay”. As this YouTuber said, after he killed all my hopes and dreams (again, straight-faced unsatisfied emoji), “Lyme is your thing.” It’s your problem. It’s not the problem of others (I’m not talking globally, which it definitely should be recognized as a potential problem of society in general, but small picture… interpersonal relationships picture). Stop trying to make it their problem. If you really loved them, you wouldn’t want them to really understand the nightmare fuel this illness is. Why are we trying so hard to drag them into our sick beds with us? Why do we wish they could live a day in our shoes? You really want to put that suffering on someone? Lyme is your thing. You contracted Lyme. Let it just be you. Accepting this can be so freeing. So empowering. No longer do you wait for an impossible “Lyme one-ness” on which you hinge your happiness.

There is One who does understand. He doesn’t live here. He can’t show himself to you lest He defeats the purposes of our earthly existence to walk by faith, but He knows you. This is how I’m learning to be “okay” with the brutal truths talked about above. I believe in a God who has a perfect love and a perfect empathy. He has felt what I feel. In quiet moments or moments of despair or weakness, I can feel for Him. My heart can reach for Him. The more I let go of trying to make earthly people display divine characteristics and instead go straight to the divine, the more I receive the peace and love I long for. The more I turn to my faith to feed me understanding of the deepest parts of me that I need, the less I see myself on earth as “me vs them”. God doesn’t divide humanity by their maladies. But we certainly do. I’m certain that if we could strip away all of the misfortunes and sufferings of the world, we would see that very similar feelings and emotions are strapped to the backs of all of us. Strip away my seizure and you will simply see fear and consuming discomfort. Despite this, we focus on modalities and it gets in the way of our abilities for benevolence. Again, this is human nature.

Personally, I view Lyme as just one of many trials in my life. Some are past, some will be future. It has been a difficult trial, perhaps it may be the most difficult during my time here. But that is all it is. I’m not going to label myself with “Lyme” and spend all my time trying to get people to notice. I speak about Lyme, I write this blog to try to educate and offer others my own understanding and empathies, but I certainly don’t want this to be my identity. I hope I do a decent job of that. I hope that in your own lives, you can “be still and know” there is God. That you can wrestle and reach heavenward for the peace, love, and the truest of understandings of everything deep in your being that He can bring. I’m so grateful for the love, support, and patience of my husband and family; it has helped me through moments of acute distress as well as prolonged. They do their absolute best. But I am most grateful to know I’m not alone, ever.  Even when the mortal-ness of my fellow mortals manifests. It is my sincerest belief that a day will come where you will be shown your life here from a different view and you will be able to look back and see the throngs of unseen beings who have attended you – beings who labor in love despite your utter unawareness.

We’ll be okay.

233

Myself at Playa Santa Theresa, Costa Rica, 3 months before becoming sick.

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21 comments on ““I have Come to Accept People’s Lack of Long Term Compassion”

  1. Friend of Lyme Sufferer
    January 14, 2016

    As a friend and coworker of someone with Lyme, I so appreciated this post. I have several times felt like I was a disappointment because I somehow wasn’t responding in the way my friend needed me to. Having had cancer, I know that feeling of isolation and “no one understands” because the reality is, whatever the disease, whatever your lot in life, we are all alone in our unique pains and our unique joys. I so believe in what you said about looking to a higher power, a connecting power, instead of looking at all the ways we are alone and that our loved ones aren’t enough to make the pain go away. To look at the people around you who would take the pain away if they could and accept their love and good will, even if they don’t express it the way you wish they would. We often feel helpless and we often do feel fatigued watching someone we love become another person. It’s lonely on that side, too. Obviously not the horridness of a Lyme diagnosis, but it’s human nature for caregivers and loved ones to mourn, too.

    You are incredibly gifted and articulate, and I appreciate the insight.

    Liked by 1 person

    • tarathackeray
      January 14, 2016

      Thank you for this comment. There is certainly a loss felt on their side too for sure.

      Like

      • Marianne Rodgers
        January 15, 2016

        It reminds me of losing my Mom. With 5 brothers, she was my very best friend. i didn’t want to lose her. She said to me, “Mary, I can’t live forever.” At least not on this earth she could not live forever. I told her I knew that, but that I just wanted to tell her I didn’t want to lose her for any reason. I just wanted to say it. She understood. Now I am the mom. I try to just be their mom. They ask how I am, then say, I don’t want to talk about that, and launch into their own problems and things going on in their lives. They don’ usually call really to find out how I am. They call because I am their mom, the listener, the problem solver. That is the way they see me, as mom mostly. I lost my mom, they do not want to lose their mom, not even to this disease, so it is better to ignore it as much as possible. I try to be their mom even now. i am the care taker, not the one who needs care. That is just the way it is.

        However, tonight, I am so tired, so I told the bugs it is time to go to sleep and leave me alone. I also told them if I can’t kick them out, it’s about time they start paying rent. Hope they listen.

        I got my tests back from dentaldna.us. Highest score on the “I told you so.” scale.The sample was from oral surgery for all the tests, not from a urine sample for the Lyme tests.. Bb, babesia, bart, erlicia, plus one flesh eating bug, and others. A culture from a swab will not grow on a petri dish, so the DNA tests are a victory just to confirm there is a lot of foreigners in my oral cavity alone. Others might be interested in this test. Look it up.

        Liked by 2 people

      • tarathackeray
        January 15, 2016

        You sound like a wonderful mother. Thank you for commenting. I hope the bugs start listening to you too! I’m definitely going to read more about that test. Many blessings.

        Like

  2. Cyndi Kershner
    January 11, 2016

    HI Tara, thank you for your blog, I enjoy reading it and also thank you for sharing your thoughts and feelings so eloquently! After reading this blog, I find myself both agreeing and disagreeing. I am a caregiver to a person with Lyme, so I can only speak to my experience as a caregiver. I am intimately acquainted with Lyme from this perspective. I have experienced cruelty, mostly unintentional, from family and friends and struggled with my faith in human nature since my son has had Lyme. We have also experienced kindness. It seems Lyme can bring out both the best and the worst in people. I am not a Christina so I don’t share your belief in a benevolent God watching out for my son. I used to be a Christian and I get the concept of original sin, which posits that people are basically broken and need God’s redemption. This is comforting for sure, and also lets us off the hook in taking responsibility for one another. I think you make a good point that people with Lyme do need to become empowered and learn to think of the illness as theirs- this will help them stop feeling victimized by life. And, I think they should still keep asking for help, reaching out, educating others, and inviting others to do what they can, knowing that there are very real limits to many people’s ability to have compassion and empathy over the long haul. I worked my way through the grief and loss of people’s very real limitations and I continue to do so, and for years I just gave up trying to reach out because I was so emotionally exhausted, but, I am finding my way back to a more balanced and less idealistic version of humanity. People have both good and bad in them, and are making choices all day long about whether to do the right thing, or the easy thing which is usually the selfish or wrong thing. I now consider myself an activist for good- I want to use my own power to choose good as much as possible and encourage others to do the same. I have that power. Just because there is so much cruelty in the world does not negate the good and my ability to choose it. This has taken me years to believe. This is how I deal with it. I try not to take selfishness personally anymore-its not personal. People can and do choose to be selfish, and I can find people out there who aren’t selfish for whom kindness and compassion are important, and let the selfish ones go.For my family its meant basically finding a whole new social group. Thanks again for your blog and I am so glad your treatment is working! I loved your post on abx. We too are doing long term abx and slowly seeing improvement.

    Like

    • tarathackeray
      January 11, 2016

      Thanks so much for the comment. Despite being Christian, I do not share the belief many others do that we come into the world broken due to original sin. We are responsible for ourselves. I have made no efforts to hide how much my wonderful family and husband have cared for me and stood up for me. They’ve been angels on earth – as I can tell you are for your son. So glad to hear he is slowly improving. Wishing your family a return to the best of health as you go through this experience! Much love.

      Like

  3. Richard
    December 7, 2015

    Really enjoyed this post Tara. I find as time goes on people who want to care by asking how are you feeling becomes less heartfelt and interested. I had one co-worker say she thought I was turning into a hypochondriac! Sometimes I have to check myself and not lash out and say don’t bother asking me nothing has changed and unless you’ve walked in my shoes you’ll never understand but that’s not the right thing to do to those who at least care enough to ask about your well being.

    Having this disease is a lonely road indeed but as you said there is always one who understands our pain and loneliness and will never leave or forsake us. Thanks again.

    Richard

    Like

    • tarathackeray
      December 7, 2015

      Appreciated this comment. Thanks Richard. I like the point you made that they did care enough to ask. Something we should appreciate.

      Like

    • GMD
      December 7, 2015

      Good comment Richard. God bless.

      Like

  4. bloggerlenny
    December 7, 2015

    Reblogged this on The Lyme Bean Chronicles and commented:
    Oh Lady of the Cake… Thanks again. Always enjoy your writing and man, I needed the perspective.

    Liked by 1 person

  5. Nadia Gerassimenko
    December 3, 2015

    This cuts like a knife. It’s true though, I have noticed that compassion is selective, limited, and above all, short-term when it comes to human nature. I do believe there are people with saintly patience, understanding, and empathy, but they are rare. If we want to be free and happy, we must accept the fact that not everyone–and not everyday–will support us forever. I hope you are being strong.

    Like

    • tarathackeray
      December 3, 2015

      Thanks for the comment! Strength is fluid too… I think we all can agree 🙂

      Like

  6. Brittany
    December 3, 2015

    Great post as always. This has been a huge battle for me. Feeling alone and never truly understood. But this post helped me see the other side of those feelings. You are so right, why would we want to put that on them? I know I need to work to accept this part of the journey and look to the One who can understand. Thank you for the perspective shift!

    Liked by 1 person

  7. LymieLovesJesus
    December 2, 2015

    Reblogged this on Lyme and a Coconut and commented:
    I’ve been more than quiet because so much is going on and it overwhelms me to write it all down for you. Meanwhile, Tara over at Will There Be Cake once again taps into my subconscious and says exactly what I need to hear and what is the hardest to hear at the same time. Who wants to hear you expect too much out of people? Who wants to hear, “Lyme is yours.”
    But Tara has a magnificent and gifted way to feed you Truth, the Hard, with that spoonful of stevia that helps the supplements /antibiotics/whatever you take go down. Tara speaks freely and transparently and I admire the heck out of her.
    Please read her blog post – both lymies and families and loved ones. Like many Tara-posts, this is another game-changer.
    Enjoy!
    I hope to be back soon.

    Liked by 1 person

  8. GMD
    December 2, 2015

    Thank you for sharing Tara. My dilemma is, and always has been, more the why. Why doesn’t Mafia criminal establishment medicine help us? Why does it just stand by quoting “do no harm,” as it does nothing!!! Like someone injured in a car accident, and in the hospital, no help so they can “do no harm.” So the accident and Lyme patient suffer, suffer, eventually dying. Most of us can heal, why do we have to suffer? Like it or not, Lyme victims (loss victims) will suffer through it, we have no choice. Why are sick politically incorrect to treat? Annette Funicello was never deserted by her loving dedicated husband. But it did not make her well. Just my opinion, with MS, if she had been treated by a Dr. J. she would have had a great chance of being well, at least a lot more well than she ever was. She took all the treatments conventional medicine offered her, and according to her personal testimony, none ever helped her at all. Annette is totally of my generation, born the same year that I was. Being so busy with my own life, I never had time to consider what she was going through. When I did read her story, I was utterly horrified!!! I had Lyme myself by then (no balance, could not get up of the floor, etc,, etc., etc., …), and had relief with treatment that was jerked. That is what gets to me as much as any suffering. Why do we have to suffer when there is available relief? I know you are suffering, but is your treatment giving you any relief? I thought it was. If not, I am so very, very, extremely sorry and horrified. With my treatment, I knew I was not totally recovered, but I functioned as “normal” once again from near the end of 2002 until 2008/2009. Being the only breadwinner, I even kept my job all that time. NOTHING would ever make me want to give up those years as “normal.” Maybe I am wrong thinking treatment can help most of us. Before I got sick myself I was in the position of working with someone who was tortured all the time, not from Lyme, but from an automobile accident. I understand what you are saying, but I still say why do those suffer, who can be helped? I can NEVER understand that part. I am not a writer, so I very much appreciate you sharing. I hope I am not out of line.

    Like

    • tarathackeray
      December 2, 2015

      I appreciate your comments as always. I am actually doing better and better from treatment. For me, it has been working. I am projected to complete major protocols by spring. I have been blessed.

      There are so many “whys” in this world that will never be answered. And if we already know the answer, perhaps they won’t be solved as we would like. I have to admit, I can not understand your experience as one who no liver has access to beneficial treatment, but my heart does break for you. Being a part of those who do log to help, it’s the unfortunate truth that we can’t help all those we wish we could, no matter how much we labor. I don’t believe the scores will ever be leveled in this life. Yes, suffering will always exist. We help who we can. We pray for and love those we can’t. It’s all we can do. Hope your day is going ok today. Much love – Tara

      Like

      • GMD
        December 2, 2015

        Tara, my day has been good. Actually, I think I know the answer as you said. We know the answer, but the answer is not pleasant. Same answer as to why the Nazi’s were so cruel, why people suffered in the Tuskegee experiment as examples. The cruelty of Lyme victims is from the devil himself, through those whom he inspires. Those who do not even realize they are inspired by him, just like Job’s friends did not know why or even that they were treating Job so badly. Look what the devil did to Job. Job was faithful until God restored him. I will be faithful … to the best of my ability … and the ability God alone can give until in heaven, as in Revelation 21:4 “And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.” I am currently communicating with Mandi Loren. She is so alone, Lyme loss. Totally deserted, lost her only child, 31 years old, dying. I just pray for her continually. When I talk to Mandi, I encourage what little I can. I have never known any Lyme patient who suffers as much as she does. I tell her some of what I go through, my purpose being to let her knows she is not alone, and that I care very much about her, and love her from a distance. I always realize she suffers much more than I do. Anyone can look her up on yt. Mandi is doing all she can to expose Lyme by telling her story. God bless you, Mandi, Yolanda, Avril, and everyone who is doing all they can to expose this disease, so maybe those who follow us will not have to suffer so, especially those who suffer needlessly. Like you said, we do what we can, then must put it in God’s hands. Jesus is my rock, my hope, my sustainer, and my salvation. I have never had a seizure. I cannot imagine how helpless it makes those who go through that feel.

        Like

    • tarathackeray
      December 2, 2015

      Lots of typos in my last comment. Hope you got the gist of it. That’s what I get for replying on my phone 🙂

      Like

      • GMD
        December 3, 2015

        No problem with typos. I edit, edit, edit, and still have typos.

        Like

  9. Anonymous
    December 2, 2015

    Thanks for sharing Tara!

    Like

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