I have Lyme. I’d like to not have it anymore. I also just want cake.
Soooo… I’ve been under a bit of a writer’s block. I’m not even going to pretend I know when my last post was, because I don’t, and I didn’t check. I can give a myriad of excuses, watch me. I’ve been feeling better. I’m in school now. Chemistry requires a lot of homework. I’m getting back into domestic duties. A few siblings are living with us right now and frankly, hanging out with them during free time is more fun than blogging. I’m just more busy these days.
See? But on the other hand, if I’m being honest, a more sinister reason trumps all. I have spent the last handful of months experiencing a very unexpected, very oddly-timed, season of grief.
Those around me for the past few years that I have been sick or in treatment have frequently commended my strength. And it’s true, I did notice during those years that I was being held together by some sort of divinely given glue. I could manage the depressive thoughts, through medication my panic attacks and anxiety were reduced to a level that wasn’t killing me, and by some miracle I was usually able to keep my humor and wit about me. I, for the most part, was blessed with a knack for the positive. At least during those in-between crisis mode parts. I would even think to myself “wow, maybe I am going to just escape all of the difficult fogs and dark clouds that plague so many others with this condition”.
*insert that loud record stop sound one interrupts with to denote an abrupt end scene*
I’ve been depressed. I’ve been feeling so lost. I don’t know how to integrate back into society again. I don’t know what or who I am anymore. My brain feels completely different. Throughout treatment I had learned to make peace with not being in control of what happens to me. But ironically, now that things have begun to stabilize and life has given me some extra length on my leash I have no idea what to do with this small amount of control I’ve received back. I have been, quite honestly, deer-in-headlights-girl deep inside. Was I regressing? Was this just evidence of damage from the infection? Brain damage? It was persistently unusual, and I found it so puzzlingly disabling.
It wasn’t until I stumbled upon an article about serious illness and Post-Traumatic Stress Disorder did I realize what was going on. I wish I had saved the link to that article so that I could share bits and pieces more concretely. What hit me right off the bat was how those who have experienced a life-changing traumatic event will experience a distinct separation of self: your life before the trauma and your life after the trauma. I immediately thought of how frequently my verbiage has begun to include phrases like “before Lyme”, and “after Lyme”. Just like war, abuse, witnessing horrific tragedies and other more commonly accepted catalysts for PTSD will distort and upend the life of a person, serious illness has the same power to imprint chaos on the mind. I’m sure so many of you can relate with me when I say, I am no longer who I once was, and no matter what I do, I can’t go back to the person I was “before Lyme”.
Most of my illness has been “crisis mode of operation”. I don’t think I had the time nor my wits about me to really process all that happened and is happening. Now that things are beginning to calm again, emotions that were previously buried in my sheer survival process are now beginning to surface. This is true of PTSD disorders. We lived in fight or flight mode during the crisis. We fought and we survived the crisis. I was put in the survival tank for an extended period of time. It changed my brain. Rewired things. It’s what the brain does. And despite the amazing plasticity of the human brain, it often can’t just revert back once you’re removed from the survival tank and placed on safe ground again.
Normally, even if I’m having a bad day, I would come online and write something funny and positive, something I would want to read myself, post it and continue on with my day actively focusing on remaining positive. With this post, I wanted to open up and share my recent struggles because something tells me I am not a little snowflake in this regard. I know many battle similar emotions and for me, identifying them and placing them in a greater framework of truth is helping. Understanding that what I’m feeling has a name, has a reason, and has physiological explanations, gives me something I can tangibly work with. With that now said, let’s talk about the private hell that Post-Traumatic Stress Disorder can be. Fun for all!
Intrusive thoughts much?
I assumed I just liked to relive things and emotionally digest them over and over. Until I realized no, this is not normal after a certain point. Re-experiencing the trauma through intrusive recollections of the event, flashbacks, and nightmares is one of the hallmark symptoms and the most common. I think we are all used to seeing this portrayed in movies quite dramatically, and true, it can manifest exactly like that. It can also be more subtle. Do you know what is happening while I lay in bed wide awake and unable to sleep? I’m re-living my Lyme experience. I’m ruminating on it. Compulsively. Memories and particularly difficult and imprinting moments are taking up my brain space. Do you know what is going on when I’m driving alone in the car? These thoughts continue. Do you know what is going on like a little side-show in my brain when I’m alone watching TV or trying to do homework or study? Snippets of trauma flash across my conscious thought-stage. Do I recoil in horror? Do I find myself in a panic attack from them? Does my heart rate rise or will I sweat? No. Do they produce emotions that I struggle to process? Yes. Does it seem like no matter how much I reflect on a particular moment or memory it isn’t able to sink it? It doesn’t process? I don’t know where to store it? Yes, yes, yes. As one girl who suffered a stomach rupture and subsequently years of surgeries and being unable to eat but through a tube stated:
“I’ll never forget the first time I had a French fry. I had been unable to eat or drink for years, and now that I was surgically reconstructed, the world was my endless buffet. I expected relief, fullness and normalcy. Instead, I was jolted back to life with every emotion that I had not wanted to feel for all of these years. I learned that the French fry was my “trigger”. Putting food back into my body felt pleasant – it made me feel. Now that I could “feel”, I was feeling everything – including the pain I had tried to swallow for years of medical uncertainty, surgical interventions, and countless disappointments.”
Will the world understand this? No. I can hardly understand. Why is it, now that I’m more able to do things, do I feel lost and confused about doing them? You’d think I would be out there jogging with my dog with joy once again but instead I’m thinking with every step “What am I doing? How do I insert this normal activity back into my life again? Why does it feel like I’m not really doing this? Am I supposed to be feeling this way when I jog? I don’t remember it being like this”. Not to mention, jogging causes your heart and respiration rate to increase, both of which were symptoms of mine, including being rushed to the hospital once unable to breath. You can imagine the emotional hurdle it is to willingly engage in something that naturally produces temporary symptoms similar to those that traumatized me… no matter how much smaller the scale. That leads me to my next PTSD symptom.
What are you avoiding?
Reminders of trauma are everywhere, as I explained with my jogging example. Those suffering from PTSD-like illnesses frequently avoid people, places, or things that will remind them of it. They do so by physically avoiding triggers, shutting down around certain people, or experiencing emotional numbness in the face of these reminders. During the year I spent undergoing IV treatments I had to go get blood drawn for safety labs (to monitor basic functioning for signs of bodily damage or other distress requiring emergency attention) every week that I infused the treatment. In the very beginning I was so sensitive that a vial or two would set in motion a minor seizure. Guess what happens when I have to make my now only once-per-month safety lab obligation? I become emotionally numb as soon as I walk in the door and I shut down. I live five blocks from the emergency room I frequented before diagnosis and the same place I was rushed to unable to breath. I see that building every day. I become extremely dissociated whenever I look at it. I can’t connect myself to my experiences there and it causes emotions I can’t explain. In fact, I’ve grown quite dissociated with much of my life right now. My bucket that I used to throw up in all the time during treatment, the one where I drew a smiley face on and the caption “this too, will pass”… I now use it to clean the house with and I look at that caption with so much confusion. It did pass. But it won’t pass. What? I know. I don’t know. It’s a gelatinous limbo that I’m stuck in that I feel I shouldn’t be stuck in anymore. You may find yourself physically avoiding triggers or emotionally avoiding them; it is one in the same.
Are you sleeping? Are you jumpy? Are you easily irritated or angered?
Check, check, check and check. These past few months I have been experiencing a persistent and very unlike me (even while very sick) inability to sleep well. I can’t fall asleep. I can’t stay asleep. I wander between my bed and the couch at night, hoping one will satisfy me. I wake in the mornings with my heart pounding and and a feeling of panic. While that last part was true since day one of my illness, it was beginning to dissipate but frequently returns – especially if I have been dreaming. Those with PTSD quite literally, can’t turn off their “fight or flight” mode. And really, it makes sense. Spend a long enough time like that and the brain will re-wire and make it the new normal. Or, experience a brief but deeply traumatic event and the brain will become hyper-sensitive to the same physiological response.
I have struggled lately with controlling my irritability and frustration. I’ve never been one to snap at people, but I feel like I need a bark collar these days. I constantly feel like I’m hanging on the last thread of composure I have. In my frustrations with self I have turned myself inside out trying to understand why I am suddenly so bothered and affected by minor inconveniences or why I resent the kitchen sink for collecting dishes or I will have an absolute coronary if I have to get up again to pee when I just went 20 minutes ago. These aren’t true angers at things, but unresolved anger with circumstances. Living in an increased arousal state such as fight of flight is incredibly exhausting physically and mentally. Give yourself a break.
Dreams. Make it stop.
Recurrent dreams in which the content, feelings, or tone of the dream is related to the traumatic events is also common. Is this you? This is me. And I’d like to give the universe a big fat “NO” as feedback for this phenomenon. Throughout my illness I frequently dream what I can only identify as total loss of control, which is weird, because I don’t consciously feel a need to be in control. The details always change as do the people and scenarios. In fact they are unimportant. But what is consistently present is that I have been wronged in some way and I can not get help. Nobody will listen. The dream always ends with me screaming and wailing, so loud. SO loud. For SO long. But nobody can hear me, or won’t hear me. It goes on forever as people just pass me by. These dreams are highly distressing to me. Whether this is my body communicating how deeply my loss of control over certain aspects of my life have affected me, or whether this is being used as an outlet because for now, I don’t comprehend it nor can I process it, I don’t know. I just know that it is evidence of many emotions yet that I’m sure I will have to wade through. If this is you too, heaven help us both… these are terrible.
An interesting (to me) bullet on the list of PTSD symptoms is memory loss. Not the usual brain fog we with Lyme are intimately familiar with, but honest spaces of time we can not recall. This is further explained as the inability to remember an important aspect of the traumatic event(s), not due to head injury, drugs, or alcohol. I know some of you can remember every detail of your experience, but that is not me. I remember bits and pieces, especially pieces of the worst of moments. But that is it. I would struggle to put together a timeline of my experience in anything but vague placements of memories. I remember least the more difficult first year of treatment. I remember moments of seizures but not the full seizure. I remember moments of ER visits but not the whole gist of it. I remember the fear, absolutely, specifics, no.
But what’s going on?
Like Lyme disease, this isn’t just all in your head. In short, the classic fight or flight response to a perceived threat is a reflexive nervous action, which is a fancy term for upregulation in the brain. While this upregulation has obvious advantages in survival situations, the very systems that organize the complicated reflexive survival behaviors can become dysregulated in some when exposed to severe trauma. Once dysregulated, chronic dysfunction will begin to impair normal functioning, and thus PTSD is born. Abnormal deficits in neuro feedback loops designed to put the brakes on a fight or flight response leaves the victim with excess excitatory brain chemicals. This creates a completely different lens in which they view their environment… which appears fraught with danger, threats, or perhaps normal things become over-whelming to do. Abnormalities in the way memories become imprinted on the brain also become apparent, possibly contributing to difficulty with memory loss or being unable to properly assess a similar yet harmless situation when it resembles the previous traumatic one. Your brain physically changes. The amygdala grows in size while the hippocampus often shrinks, resulting in upheaval in the “neural circuitry of stress”. Your hippocampus is responsible for facilitiating the appropriate stress response to environmental stimulus, but when this process is thrown off kilter by trauma it sends inappropriate stress signals to the amygdala. The amygdala is responsible for processing emotions and is linked to the fear response. In layman’s terms, your hippocampus is erroneously perceiving threats left and right and this is telling your emotion center to get all riled up when it doesn’t have to be. Again… “riled up” doesn’t have to always mean panic or fear, but can also be the opposite end of the spectrum. Like the blue screen of death on your computer but only in your head. Getting my blood drawn hasn’t resulted in seizure activity for over two years, but despite the threat being gone my hippocampus is still sending a stress signal when I walk into LabCorp and parts of me shut down and dissociate. PTSD patients are almost always found with increased amygdala activity. For real sciencey studies, click here. There are also genetic predispositions that have been discovered.
Also, here is a full symptom list/criteria for PTSD that you may or may not identify with. Remember, PTSD is usually only found post-trauma. If you are still significantly ill from something such as Lyme, it is highly likely many of the symptoms you identify with may be from the myriad of issues that can be attributed to the disease itself. In which case you should talk to your Lyme physician about your concerns. And of course, even if you do not meet the criteria for an actual PTSD, experiencing and healing from something like the devastation of Lyme disease will always come with emotional messes and periods of grief that need to be waded through. Finally, it is absolutely inappropriate to try to measure a person’s trauma or their level of emotional disability, compare to others, or assume a universal trauma-to-resulting-disorder ratio exists. Some can and have experienced horrific things and are able to heal quickly and fully while others may become crippled for an extremely long time from the same experience. In other words, phrases like “you should be over this by now”, “but you’re safe now”, or “it wasn’t that bad”, should never be uttered.
Shifting gears a bit. Aside from the very real potential for a secondary emotional disorder to pop up during your healing, the other complexities of healing from Lyme are not to be ignored. Something else I’ve been struggling with is the loss of my identity. In an instant, almost everything was taken from me. What am I when my job is lost, my hobbies are gone, the reins of my own life are taken from my grip, and the things I love aren’t possible to love anymore? For so many, they lose these identifying characteristics, even to the point of losing much of their personality and zest for life. What’s put in its place is “sick person”, or “Lymie”. I worked hard throughout my illness to not let that happen. I worked hard to invent new things to form my identity. But really, I look back and see many of these as just place holders – and ultimately, most led back to the one thing that dominated my life regardless… my illness. Nevertheless I accepted my illness and assumed these roles and while doing so became fairly oblivious to the fact that when all was said and done, I was going to have to eventually change for real. A new me. Because it was true; there was no going back.
As I have touched on, much of my life is still a constant reminder of my trauma. Currently, I stand amidst a pile of things I once was, mixed in with new memories both haunting and sweet. Much of this I still do not want to confront emotionally. Much of it I feel like I have, but continue to revisit regardless. You see, each piece once belonged to me. New pieces somehow have to fit in the final version. Many of my old pieces won’t have place in the new me. I am realizing I have to begin some sort of process of sifting through each piece, making sense of it, and fitting it properly in the framework of myself. There is grief associated with each piece I will let go of. This will take a long time. One thing I’ve been thinking about these past few days is “strength”. Strength was a large part of my identify before Lyme. I had lived through previous health issues, heart-breaking disappointment, previous abandonment and abuse resulting in a twice-divorced-by-30 label. I had worked through the profound grief over the loss of my little brother. I was athletic and also identified as physically strong and capable. Yes, I felt strong, and yet, enduring this illness has brought me to my knees in more ways than those previous experiences did. Those previous things were loss of things or people I loved. Lyme however, was/is a loss of self. I look at my “strength” piece on the floor and it’s now complicated by the experiences of this illness. I know it’s redefined, but I haven’t settled on how to put it back on me yet. You would think it would be even more clear. But it’s not. I’m not comfortable yet identifying with “strength”, when so much of this was simply put upon me. When so much of it was simply endured. When so much of it didn’t present an alternate path. Perhaps it is simple and I’m just struggling personally with making sense of it. Who knows. Regardless, I feel like the empty blue avatar Facebook assigns you if you don’t upload a profile picture. And that is common. And you are not alone.
A few years ago, a fire broke out in one of my church’s historic buildings that was built in 1883. It was considered a beautiful building and sentimental to many. Pictured is a before the fire, during the fire, and an after the fire photo:
I have come to identify deeply with this building after learning of its story. Everyone loved it just fine before the fire and deemed the building worthy of every effort to maintain and protect its original architecture. The fire broke out and burned most of the inside. As you can see from the photo, by most appearances, the outer shell showed only minor damage or evidence thereof. But peek through its windows and you see that internally the fire raged and when it was over nothing really remained inside. Do we not all feel this dichotomy with Lyme? How much I felt like the second photo during treatment, and how much I’m beginning to feel like the third photo now. After the fire it was determined by our Church that we would rebuild this meeting house and turn it into a temple, which we consider a more sacred building set apart for making special promises to God in. A little over two weeks ago the finished, brand new temple was dedicated with the theme “Beauty for Ashes”. It was taken from the book of Isaiah wherein he states “…To appoint unto them that mourn in Zion, to give unto them beauty for ashes“. (Isaiah 61:1-3)
It is stunningly beautiful now. It is beauty we never would have had without the fire, so attached we were to its former self. I’m struck with the message of this building. Currently I feel as if I’m just full of ashes and damage, but perhaps my own fires were meant to break me in to pieces all along. Break me so that I could be rebuilt better, with greater purpose and meaning and more closely aligned with my future potential. I already cherish some of my Lyme experiences and see within them opportunity for growth. But I also know that as I work through the many remaining difficult emotions that come with facing the true depths of my own traumas and experiences with my illness, I will begin to see those memories and experiences as even more beautiful. Sacred, even. I hope you can see your story in this as well. I hope you can feel that your fires were never meant to destroy. I hope that as you encounter your own struggles in making sense of the broken and burnt bits and pieces of yourself, as you allow yourself to feel and process, as you lay new pieces of brick one by one, that you can begin to see a more beautiful you take shape.
I hope that you can believe in receiving your own beauty for ashes.