My Reality And Uncomfortable Truths:Life After Lyme, Being an Adult with PANS/PANDAS, & Dealing with People Who Are Uncomfortable with Painful Truths
WARNING: This is completely unedited and taken from my personal journal. At the time, I was unsure if I would show it to anyone or post it anywhere, but in the end decided to and also decided that refusing to edit my true thoughts was best, as doing so would inevitably lead me to edit more than grammar, but would cause me to start unconsciously editing things to sound more publicly “acceptable” …aka, I would erase a lot of truths with bullshit in an attempt to appease people and seem more likable by seeming less like myself in the moment this was written.
How odd that we do that?
(PS: Feel free to skip to the last two paragraphs for the most important points if you wish...)
God, I have cut off my vulnerable writing voice for so long that I have been unsure if it even still exists, but I have been sure of one terrifying fact: if in fact it does (and deep down, I always have known it does, because the creative/vulnerable spark never dies out entirely, it just goes into hibernation), when it emerges it will not emerge gracefully. Nothing about it will be politically correct, or whatever. It will be complete diarrhea of the mouth, an unconscious and unfiltered stream of words from the soul, that will offend some and appeal to others –if it ever even reaches the hands of others— because you can only bottle something so intense within for so long before the dam breaks and the waters of truth come gushing through. In all honesty, I guess the root of my fear, of writing about my reality, has had nothing to do with what other think of it because I never truly write with the intention of others reading it (that’s usually an after effect of me deciding to share my personal journal publicly). The root of my fear about putting into words all the beautiful but messy truth that is my reality has always been my fear of facing it, my fear that I am too weak to handle it …because I never truly know how I feel about something until I write it out. Writing is my therapy. I can go to all the counselors in the world, and they cannot break through my walls and open the doors to insight the way words to paper can for me. I am not sure why, but that’s the way I am wired.
So, here I am tonight, pen to paper as I find myself at the beginning of yet another new year, once again feeling a thousand things at once --utterly lost and alone, yet hopeful and surrounded by love and grace, weighed down by the darkness around me yet propelled forward by the flickering flame of resilience (or perhaps stubbornness) that refuses to burn out in the darkest nights of my soul. The flame that has kept me going since I fell ill 6 years ago and lost way more than my physical health, but every tiny shred of the person I thought I was. Falling seriously ill so young was the greatest of undoing’s –it took me to rock bottom, it busted through the deepest depths of my soul into a cavity beneath it I never knew existed. It did more than steal my relationships, my physical abilities, my cognitive abilities, including even my abilities to read and write for over a year. It did MUCH more. It stole my personality, the person I had known myself to be for over two decades …or should I say, it ripped away the false illusion of who I thought I was and showed me greater depths of myself, changing me into a person with stronger convictions, more rooted in herself, more self-aware, more conscious, more mindful. For that reason, I have found solace in journeying through the dark waters of Lyme and the complex of illnesses that came with it. I have made peace with that journey, realizing that it was never about overcoming Lyme, which I am so grateful to have had the chance to do. Rather, it was always about overcoming myself, my false sense of self …it was always about, as Eckhart Tolle so eloquently put it “dying to myself before I die”, so that I may truly come alive. For THAT I have always been more grateful.
The journey through Lyme was a journey through all the parts of myself that were superficial, conditioned parts of me. In the end, I not only found life after Lyme in a physical sense. I found life after Lyme in the sense of who I truly am. I never got my “life back” as I so often groaned I wanted during the darkest hours, unbeknownst to me that was impossible. Instead, I got a brand-new life, in which I would like to say I was brand new person …but I think it is more accurate to say I was finally myself. Some people wait a lifetime to wake up to the truth of who they really are and what really matters in life, and that’s if they’re lucky, because some people never wake up to such truths. However, I was blessed with the opportunity to wake up to such truths all before the age of 30, which overwhelms me with gratitude and endows me with the perspective that none of the pain was ever wasted. When looking at it from that perspective, I am EASILY able to shift from the position of “poor me, I lost most of my twenties and I will never get those years back” to “lucky me, I lost so much but gained so much more, all of which will only serve to enrich ever year, every day, every moment I have left.”
SO, why do I still feel confused, still feel lost, amidst these overwhelmingly amazing feelings and newfound perspective that a new lease on life offers? Well, to put it simply, it’s because somewhere throughout the journey of healing from Lyme, my immune system mistakenly created negative antibodies when attempting to attack one of the infections (we suspect it was Mycoplasma due to the time of its onset) and began attacking not only foreign invaders, but my own brain as well. What this has meant, in my case at least, is that even with Lyme under control, anytime my immune system senses a foreign invader it not only attacks it but goes after my brain as well (I am hesitant to put this in present tense, considering I just received my latest treatment for PANS (in the form of IVIG) only weeks ago, and it could still take and clear things up. However, for the purpose of writing this, it’s easier just to put it in present tense). SO, like I said, ANY foreign invader seems capable of setting off the chain reaction that is a PANS flare including things as simple as allergens, a little cold, and so on.
As one can imagine, this is incredibly confusing because I wake up some days ready to take on the world and stoked to be working on my career as a writer/herbalist/nutritionist/yoga therapist, planning my wedding and so one ….and then BAM, suddenly hints of a PANS flare hit me and before I know it I am knocked flat on my ass. The first hint is usually a feeling of “fullness” in the front of my head which may or may not be accompanied by the pain of an intense headache, which I now know is a sign that my frontal lobe is beginning to swell, and my dopamine receptors in the frontal lobe are beginning to be attacked by my own immune system. The second hint that a flare is in the making is a bit stranger, one that took doctors quite a while to understand ---everything starts looking red. The best way to put it to someone who has not experienced it is this: Imagine looking out an open window which still has the black screen intact. From this point of view, you can still see the outside world, albeit through the black mesh that is the screen. Well, for me, it is the same …except, there is no window I am looking out, and there is no black screen. Instead, there seems to be a red screen placed in the forefront of my vision, and I am peering out at the world through it. So, I can still make objects out, but through a mesh of red. I now know this to be a sign of inflammation, which my fiancé had guessed years ago.
However, when I tried to explain this symptom to doctors, the digestion of my words were always followed by a look of confusion because they did not understand it, which was immediately covered by an expression of “this girl is crazy and making this up”, which is usually followed by a script for an (of ALL things) antidepressant; because, well, for too many doctors (not ALL though) it’s far easier to write a patient off as crazy when they do not understand a symptom than to admit they do not understand and are not all knowing unfortunately. FORTUNATELY, for me, I have a support system who knows better than to place me on psych meds and knows I am not crazy. THIS is incredibly important, because after those first two hints that a flare is coming on (the seeing red and sensation of brain swelling), comes MANY symptoms which by all means would land me in a psych ward if it weren’t for them. After those first two hints of a flare, I descend into a downward spiral of behaviors and symptoms that make me even think I am crazy and belong locked up. I display symptoms and behaviors like EXTREME OCD, meltdowns, tantrums, associating objects and feelings with colors (i.e. “This feels yellow, get it away from me), get extreme aversions to colors, start thinking everything is contaminated, go into full blown rages which I basically lose consciousness of during …or have no impulse control… and almost always find myself balled up in a heap of tears convinced I belong in a straight jacket and life would be easier on everyone if I were dead or in fact IN a strait jacket.
In fact, I have begged my own mom and fiancé to commit me to an insane asylum or shoot me, and have been dead serious, pleading them to do one or the other because I become so convinced of the fact that it is necessary for me to be done away with because I am too great of a risk to the world around me. Luckily, they know better, and after every medical treatment failed and every infectious disease doctor turned out to be wrong, and with the knowing that psych meds are a recipe for disaster and not even the answer for someone like me, we finally found our answer in the form of a test called the Cunningham Panel for PANS/PANDAS, and a doctor who is an immunologist who specializes in the condition. Although almost all of his patients are children who have acquired PANDAS from Strep (PANDAS acts in the same way as PANS though, the only difference is PANS is caused by an infection other than strep), he took on my case and for the first time in so long I felt understood. Found. Not judged. Ever since, I have been in treatment for PANS, and have received my first two rounds of IVIG, I have had ups and downs.
Although the first round of IVIG resulted in the unfortunate side effect of Aseptic Meningitis, it was pretty much uphill for me after that cleared …until hints of flares started to return, which eventually turned into full blown flares, indicating I needed more than one round of IVIG. So, I got a second a few weeks ago, and although meningitis didn’t initially knock me down the way it did the first time, I am now finding the aftermath of this round to be much tougher, with more flares. This means, I wake up some days feeling like my old self, stoked for life, and then go through periods of flare ups (not uncommon after IVIG) and being bed bound, unable to answer my phone or follow through with commitments, extremely depressed, and so on.
I have found that now, more than ever, I hide from the world when this happens. Not so much because I am embarrassed, because I know it’s not my fault and I understand the scientific mechanisms causing outrageous behaviors and symptoms, but because I cannot pretend to be normal during times like this and am forced to be truthful regardless of how uncomfortable that makes uninformed people feel. This truthfulness inevitably leads to, most of the time, people immediately offering up 5,000 suggestions of what I should do before they even take time to digest what I just said properly in which case they would understand their suggestions (i.e. take St. John’s wort! Try this diet! Get more sun! Drink more water!) are laughable. I am beyond accustomed to dealing with such misinformed suggestions, and used to write them off as people being kind and just genuinely trying to help from the goodness of their hearts. Now, I am willing to come out and say, or admit, the goddamn truth that breaks the unspoken rule imposed on all people with misunderstood illnesses by a largely misinformed society: These suggestions, past a certain point, are in no way coming from the goodness of another person’s heart even if they themselves think they are. Subconsciously, they almost always stem from the person’s fear of the unknown, inability to be comfortable with what makes them uncomfortable (illness), and their immediate instinct to escape that discomfort in the form of words they think provide solace but –let me assure you— almost never do.
So, my advice for people who are not comfortable being uncomfortable, who much prefer illusions over painful truths and are unwilling to sit in pain with another human being even when they don’t understand their pain, is this: Do NOT ask someone who is sick how they are doing, if you do not want a genuine answer …because there is a good change that said person is far too exhausted to be fake, and you will have to endure an answer that makes you squirm in your boots, begging to get back to the illusion that everything is OKAY because you have not yet figured out that sometimes it is OKAY to NOT be OKAY. My next piece of advice: learn to become comfortable with being uncomfortable, because living a real, raw and authentic life demands it of EVERYONE at some time or another, in one way or another. You are no exception.
And finally, my advice to those who, like me, have taken to hiding from the world during their darkest hours out of utter exhaustion of dealing with people who quickly scramble to cover up any truth that may be painful or uncomfortable using hollow words is this: Do not hide. Do not be afraid of making people uncomfortable. Know it is OKAY to not be okay, and it is not your job to coddle people who do not yet understand that. In fact, in doing so, we are helping no one. We are actually doing them a disservice, robbing them the opportunity to understand other walks of life to a greater degree, and thus themselves to a greater degree, whether they take said opportunity or not. Finally, this in no way means throwing a pity party, making statuses on social media about how shitty your life is and how much worse your pain is than everyone else’s every chance you get. It simply means honest, answering questions with raw authenticity, unafraid if the person asking can handle it. They asked, and you answered truthfully, and stayed true to yourself …that is what matters. Anything after is not your fault. The only way to stay true to yourself and not shut off your genuine voice, is to always speak with it. Never, under any circumstance, sugarcoat an answer and skate around the truth when asked a question as simple as “how are you doing?”, because the only way to stay true to yourself –and not lose yourself, and your true voice—is to stay true to the world, the people, around you by answering with sheer honesty (it doesn’t have to be filled with dramatic emotion, but it does have to be the simple truth) without fear of how or even if the other person, or people, will take it. That is their journey, not yours. <3