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