I have Lyme. I’d like to not have it anymore. I also just want cake.
This is one of the “symptoms” I recorded sometime in September 2013 in the logbook of my medical symptoms that I experienced each day. I did this in desperate hopes of eventually finding a doctor who would read them and be able to tell me what was wrong with me. I did this because so far none of them believed me to be suffering anything other than a “general anxiety disorder”. Okay, fine. I will tell all you doctors what was causing me anxiety… the incompetence of all YOU! I look back at the symptom recording of the early months of my illness and I become saddened and overwhelmed at what I experienced. It is all a blur to me now. It is as if I am viewing the records of someone else, and I ache for that person.
“Profound weakness. Surges in my head that repeatedly pound me all day long. Heart palpitations. Skipped beats. Feeling like I am going to black out repeatedly, all day long. Spasms. Tremors. Shaking of my entire body. Abnormal sensations inside my head. Sudden, bursting tachycardia with chest pain. Severe shortness of breath. Sensation of suffocation. Burning pain flushing up my neck, jaw, face, and head. Pacing my apartment unable to calm down. Sensitivity to light and sound. Exaggerated perceptions and sensations. Feelings of sudden doom. Hallucinations. Adrenaline rushes happening over and over for no reason. Limbs going numb. Feeling the need to collapse. Chills. Incapacitating flushing heat. Shock-like sensations in my brain. Overall, severe, indescribable internal discomfort throughout my entire body.” (small sampling from an entry)
I read this and I don’t know how I survived. Physiologically. Psychologically. Emotionally. Where does the energy come from to endure daily entries like this, day after day, for months. By September 2013 I had been ill for three months. Three months of this. I see this particular entry, imagine my shaking hand recording it, the other hand grasping my chest over my racing and chaotic heart, the feelings of waning hope, the convictions I had that I wasn’t going to survive much longer, and then penning those words… “difficulty existing“. I had run out of ways to explain myself.
Rewind to the third week of June, the week where everything went bottom-up overnight. The week I visited the Emergency Room three times, and each time was sent home with nothing but Xanax. The insomnia I descended into that first week had me awake for nearly all of it. I spent each night hunched over a pillow in the dark, suffering in horror as this infection I did not know I had raged in my brain. Simply overnight I had lost my life as I knew it. I could do nothing but hunch over that pillow, on the bed, the couch, the floor, and just endure. I would periodically weep over the loss of my activities, my abilities, my enjoyments. I would weep over the unanswered questions which only assured me further agony as no help could be provided.
I remember my third and final visit to the Emergency Room. I pleaded for the doctor to run their tests again only for them to all, once again, come back normal. I remember that upon hearing the news I finally could not contain my tears over the disappointment. Right there in that hospital bed I began weeping. The ER doctor in charge of me took a stool at my bedside, took my shaking hand in his, and just sat with me for several minutes as I cried. At the time I was both angry at him for condemning me to continuing suffering and yet touched by his act of kindness – but mostly angry. Yet looking back, that act of kindnessa breached for a moment the professional, ego-driven aloofness many medical doctors have succumbed to from their own repeated exposure to human pain. Doctors don’t touch people outside of diagnostic acts. Most people don’t touch other strange people at all. But he did. He could find nothing wrong with me and yet chose anyways to stop for a moment and acknowledge my tears, to acknowledge my “difficulty existing”. Only in retrospect do I fully appreciate that. However at the time, I left completely crossing out the conventional medical establishments as they were.
I didn’t really start out my day with a specific topic to post about. But I had pulled out my old medical journal this morning, flipped through its pages and that one entry in September stuck out to me. I know that at some point in all of our lives we will experience “difficult existing”. Perhaps we will experience it a lot. I look back and marvel at my survival through not just those early months in my illness, but also through the difficulties that have followed through my treatment. At times, I am no better physically even today, but the majority of the time I am. I am doing much better in fact. However, the burden of not knowing compounds a difficult situation ten-fold. It is not knowing when your suffering will end that often leads one to exclaim “I can’t, anymore”. I may know what is wrong with me now, but I do not yet know when it will end. And so, I use that phrase a lot. I’ve used that phrase so many times during my treatment it probably means nothing now to my family members who have to hear it. Yet, each day, I do. I do.
God is behind you surviving all of your “I can’t” moments, days, weeks… etc. Special, kind people are placed in your life to help you survive all of your “I can’t” moments. I look back on certain moments and see in myself a strength and a survival only describable as by some other power. I look back and I see many moments where someone else helped me endure. I was recently told by someone “there is beauty in suffering”. I would slightly disagree. Suffering is not beautiful. Suffering is ugly and difficult to behold. Suffering is pain. Suffering is dark. It is the soul who gracefully endures suffering that is beautiful. It is hope amidst suffering that is beautiful. It is faith. It is those weak human fingers gripping the edge with their knuckles white until divine intervention arrives, that is beautiful. Also beautiful – the soul who weeps with the soul enduring. The soul who willing sits in the darkness with someone else. Be that person. Be both persons. Maybe you’ll get so good at it you can be both persons at the same time. That would be profoundly beautiful. I look at my sweet, enduring husband and see both persons.
I am certainly far from perfect at this… there is a learning curve as with most things. But I have found that it has been through gracefully enduring times of “difficulty existing” that I have actually become more of who I really am. It always was just the Lord reminding me what I am capable of, the spirit I brought with me to earth, my real self hiding underneath the superficial things mortality has made of me. Looking back over the courses my illness has taken me, I have changed. I have let go of those things I wept for in the earlier months. I have found greater purposes. I have probably been sick so long because I can be a slow learner. But I still look forward to recovery not so I can go back to who I was and the life I was living, but so that I can move on with better purposes in the life I have yet to live.
(You will never hear me say that again!)