Initially I suppose it’s like when a balloon breaks. There’s a pop then a blubber when the rest of the air rushes out. The rubber skin is thin and gives way all-at-once except for the last little bit of air. The spent orb lies limp on some horizontal surface never to have value again. How unlike the balloon we are when we are popped into shock then deflated by trauma. With the Lord’s help, we can bounce back!
Emerging from a violent convulsive episode, the kind where I am awake and cannot breathe or move, has the effect of popping my mind into a state where I cannot communicate. My Doctor described it as a dulling of my ability to think but that’s not what I experience. When I am struggling to breathe and ANY initiation of movement, even from my tiny vocal cord muscles or diaphragm trying to produce speech, throws me back into seizing. I have to ride it out for a time. Sometimes I have to cough to re-start my breathing reflex. Through it all, I have to evaluate if I can blurt out any intelligible words and if it’s worth the probable blow-back, rebound of seizing that follows. And when I do speak, I choose the fewest number of words that will communicate the most. Pithiness is key. The rest of me becomes as limp as that deflated balloon if the entire episode has gone beyond a minute or two. Usually I can’t even move my arms to try to take a rescue remedy until the seizing has somehow paused! Kind of backwards dontcha think? Weakness and headache and ringing in my ears and all kinds of nasty effects usually last a long time such that I may need to be fed or carried to the bathroom or bed, or just lie motionless until motor control returns. Then there’s the neck pain. Feels like whiplash. Then there’s the horror of realizing what someone else has just witnessed me this episode. I just want to disappear from the world afterwards, become invisible.
My last post was after an episode so horrible that I could not write about it in complete sentences. My husband graciously had taken off from work to drive me to a Doctor’s appointment. I was already in a lot of pain whilst sitting in the waiting room. The seizing started early in the visit and escalated so violently that I had slid down in my chair, curled to my left side trying to brace my head-and-neck as gutteral screams of holy terror emerged from deep within me. I struggled to breathe. Dr. J attempted to evaluate my back and right-sided pain so he could do a chiropractic adjustment. Seriously? He had Steve lift me up from under my arms as my legs gave way beneath me. Attempting to stand exacerbated the seizing. I had to let go which left me hanging from his arms. All I could do was cry in between gasps for air. Dr. J pushed on several upper lumbar segments of my back then had Steve put me back into the hard office chair. The convulsions didn’t stop. Dr. J had Steve pick me up again to attempt more “hanging adjustments” then plop me onto the exam table. Dr. J had discovered in prior visits that cervical impingements had the power to worsen my condition; cervical adjustments could bring me out of an episode when I was in a lot of pain as well. So within a minute of some adapted type of manual manipulation to my neck, my body screeched to a halt. The episode was now over.
I lain on that exam table staring at the ceiling, in shock. All of this was not a new phenomenon but each one is exceedingly disturbing. Dr. J has seen and brought me out of dozens of horrific episodes before. But i don’t think that Dr. J has seen a complete neurological collapse of my lower extremities nor repeated screams as if my brain was ON FIRE!!! Coupled with the gasps to breathe, searing pain, and violent amplitude of convulsing, this was probably the worst episode I’d ever had in Dr. J’s office. I whimpered as I eventually returned to my padded but hard office chair, shell-shocked by what was still going on in my life. We are nearly 9 years since the first convulsive episode on November 20, 2011. Why hasn’t anyone fixed this yet for crying out loud?! Dr, J’s timer had long gone off during the office visit and he appeared to be wrapping up his clinical summary on the computer. Somehow I found the strength to blurt out, “can we do some kind of labs or testing?” Evidently I’d hit the BINGO button with Dr. J. He ordered labs, an MRI, ultrasound, and office tests on the spot. It was time to re-evaluate a bunch of things. Results have now started coming in as I finish up the last of the scans, pending insurance approval of course.
It took me a day to partially recover from that incident last week. The next day I pushed myself to go grocery shopping early in the morning BEFORE going to bed (as my sleep/wake cycles continue to be reversed) and it took another day to recover from that outing. All of this came on the heels of a full moon, failed 2-week trial of an anti-fungal that escalated the convulsive episodes to FIVE HOURS PER DAY until I stopped it, the Doc visit and stress of follow-up medical testing, and short trial of an anti-parasitic medication before the full moon. More testing and IV fluids continue this week. I am exhausted. But hey, a new herbal anti-fungal came in the mail two days ago so whadddya say I try that? Geez. Why do I even try anymore? I just do.
18So I say, “My splendor is gone and all that I had hoped from the Lord.”
19 I remember my affliction and my wandering, the bitterness and the gall. 20 I well remember them, and my soul is downcast within me. 21 Yet this I call to mind and therefore I have hope:
22 Because of the Lord’s great love we are not consumed, for his compassions never fail. 23 They are new every morning; great is your faithfulness. 24 I say to myself, “The Lord is my portion; therefore I will wait for him.”
This scripture from the October 10th meditation in A Spectacle of Glory by Joni Eareckson Tada equips me to bounce back from the darkness of my suffering. Unlike a balloon that is left lifeless, useless, and seemingly hopeless, the Lord renews me enough each day so that I may carry on the tasks, the journey that He has ordained. Like getting all of those lab tests done, on top of other labs and medical appointments already scheduled for me. On top of some basic self care and chores that must be done. But hey, I would have never met Gary in the waiting room at our local hospital if the tests hadn’t been written that fateful day in Dr. J’s office nor had I gotten to the first lab too late to do the lab draws there. Nope. The man in visible pain rolled his walker to the chair right next to me for a Divine appointment of prayer and ministry that bounced me out of my own stuff without hesitation. He said he doesn’t have anyone praying for him. He has several tests and a kidney procedure coming up soon. I hope you will pray for Gary too, Gentle Reader. And me too. Gotcha covered already. Thanks a bunch, JJ
In Part 1 of this story, I disclosed a horrific scene that has plagued my mind and body for decades. The only way for the incident to have been true and for me to have survived without going completely MAD, is by the grace of repression. It’s a coping mechanism of our mind that we have to deal with severe trauma lest we fall into addiction, self-destructive, catatonia, mental illness, homicidal/suicidal behavior, or worse. Even though we may not “remember” what happened, the mind and body never really forget and for me, the stored memories of a fateful day has been revealed in bits and pieces over a very long period of time. A strong image, smell, sound, or new traumatic event can trigger a chain of events that brings it back and more recently for me that trigger has been convulsive episodes. The episodes revealed the truth.
A waking seizure attack comprises convulsive episodes for me that are not epileptic nor psychogenic. The seizure comes virtually anytime and, less than 1% of the time, a memory has gotten unlocked underneath it before the episode ends. It’s as if my brain freezes and goes back in time accompanied by a feeling of terror so intense that my brain feels like it is on fire; I cannot stop the screaming. There is horrific pain, gasping for air, and thoughts that slow waaaay down. An observer would describe it as a seizure followed by a nearly catatonic state when I cannot move or speak or breathe. Limbs often shake, one violently flapping then the other, then both legs involuntarily move very rapidly together-and-apart like that of a child in an autistic fit of sorts. I am awake; my eyes are closed but eyelids twitch or squeeze as if squinting (in one eye or both). I am always aware of my surroundings although I may or may not be able to speak when it stops. This electrical activity of my brain-on-fire has had the power to unlock images and scenes from my past that fit what I already recall in my history. It’s as if the terrifying emotion that I was unable to express at the time of the incident is finally released to the light of day. It is not fake. The memory always fits a scene that I do recall from my past, much like what happens when you finally locate a missing piece of a puzzle. A puzzle with edges fried by fire, that is. Finally you can see the full image albeit tainted by the horror of what you are now seeing more clearly.
I concluded Part 1 with two methods that my mentally ill father used to try to get me to forget what happened at his home when I was a pre-teen. Years later I would come to understand that he was 1) using methods that he probably had tried on himself to manage the thought disorder of his own paranoid schizophrenia, 2) experimenting with mind control methods popular in the fields of psycho-cybernetics and psychology of the 1970’s, 3) drinking a lot of wine, 4) not hiding what he was doing most of the time (i.e. there were witnesses who have corroborated pieces of every scene that I have recalled), and 5) trying to get me to forget what happened, perhaps knowing the damage that trauma in his own childhood had done to him. I believe that his mental illness was a consequence of ritualistic (i.e. continuous) verbal and physical abuse by his mother/passive father until he found a way out of the home as a young adult by marrying my Mom. But RoseAnne was fleeing her own abusive father/passive mother. Their marriage was doomed shortly after it started as abusive patterns repeated themselves between them, spilling over into the lives of little Julie, Michael, and Robert. Eventually my Dad ran away, came back, then ran away again for twenty-seven years. What a mess.
Sadly when those really bad things happened to me at his home, he wouldn’t know the difference between how to help me and how helping me ended up hurting me even more. To get me to forget a horrific murder scene, the maiming of his pet German shepherd in a satanic ritual, and the sexual abuse by two women ALL DURING THE SAME DAY of a visitation to his home, my Dad tried used a method of instilling intense FEAR. He wanted me to forget what happened by attempting to cover it with other intense emotions, images, and threats. Forget trying to talk about it!!! (I am aware that there are witnesses who were in the house at the time who have either been sworn to secrecy or were under the influence of so many drugs and alcohol that they have some level of amnesia as well. Maybe something will trigger their memories one day? Maybe one of them will try to find me through this blog?) My Dad was wrong. Subjecting me to more fear compounded the torture, the trauma even more. Eventually I remembered the most important parts of the story. I wrote about it to release it’s power over me and highlight the power of our Lord to overcome my dark hell on earth.
I describe one method my dad used to instill fear in Part 1: nearly drowning me in our backyard pool. The damage to my neck has continued for my entire life. Another method he tried was injecting me multiple times with a psychedelic drug that left pock marks on the inner surface of both of my elbows. Perhaps he thought that the altered mental state created by the drug would cover my memories? He was right: I didn’t recall most of it for two decades. The blisters that appeared right afterwards then later the scars raised repeated suspicion from our family doctor, sure that I was shooting up drugs but hey, I was just a kid at the time. I still have the scars to this day albeit distorted by the effects of aging. Another family member disclosed that some people in my dad’s circle of people used hard drugs in addition to satanic rituals such as seances; sadly he won’t tell me anything else, alluding to needing to protect his wife who I believe was also present. The seances were very likely held at a table right in front of the couch to which I retreated during that fateful day at his house. This exposure to the supernatural world opened me up at a tender age to demonic influences of the occult (that would be compounded by teenage curiosities with a Ouija board). The abuse, the occult, the psychedelic drugs, and perhaps even changing body chemistry of puberty created a lock-down in my mind and body that most people would never survive. I know. It took me a year in a healing prayer ministry to start to understand the power of the demonic and how to stand firmly with the power of Jesus Christ. And as I write this, I am the only surviving member of my immediate family, all tainted by various forms of evil known as abuse.
Three More Methods
For most of my life I have had difficulty falling asleep. It used to take me up to 90 minutes to settle down enough to finally drift off to sleep or rather endure the difficult sequencing required to let go. The problem? Intensely fearful thoughts to the level of waking night terrors at times. If I’d ever had a nightmare more than once, my mind would often recall them again and again at random while I was trying to calm my thinking down enough to be able to sleep. Sometimes a scary scene would continue getting worse and worse then other times it would just keep repeating itself like a scene viewed from a broken piece of film flapping in an old theater projector. As I grew older I learned a technique of trying to re-write the dream or images to a happier ending. Sometimes it helped and sometimes it didn’t. Eventually I passed out anyways from mental exhaustion. Most of the abuse that I experienced in my childhood happened either at night or when falling asleep. No surprises here that I would need to work on this problem for most of my adult life: dealing with night terrors and waking nightmares, terrifying dreams overnight, then flashbacks of abuse.
Another problem was the black-and-white flashes of lighted psychedelic designs that spun in my mind’s eye or were thrust near-and-far at quick intervals before stopping. These occurrences happened every single night as I was trying to fall asleep, somewhere between the first and second stages of REM sleep. I thought it was normal. It was as if someone was focusing the beam of a flashlight on a toy pinwheel or a spinning saucer 2 to 3 feet in front of my face. The bedroom would be dark and my eyes closed after lying down to sleep but the lines and designs in my “mind’s eye” were as clear as a pen and ink drawing on bright white watercolor paper. There was no way to stop these images from coming to mind. They happened every single night of my life for decades. Even though I had taken psychology classes in college and worked many years as an Occupational Therapist in the mental health field, it didn’t register to me that this nighttime behavior wasn’t normal until I finally started getting counseling in my 40’s specifically for this type of abuse. Ritual abuse occurs when a person of influence uses a repeated, harmful behavior to control another person for the gain of the abuser, over an extended period of time. It can be spiritual, demonic, or other forms as well. Flashing black-and-white images in front of my face when I was falling asleep is the third method of ritual abuse that my Dad used to try to get me forget, to try to control me and my thought processes. (It’s actually related to a twisted form of psychocybernetics invented by Maxwell Maltz in the 1960s and described here.)
I cannot explain exactly when or why the nighttime “flash-treatments” began. I don’t know if my Dad said anything when he did this or when he eventually stopped them. How many times did it take for it to become almost permanent in my mind? There was enough repetition to cause harm. After I came to faith in Jesus Christ and about a decade of therapy, the images slowed then stopped. I don’t see them anymore when I am trying to fall asleep. Praise the Lord! In examining all of this, I realized that my dad’s use of strange rituals that were frightful to me as a child were not isolated events. In Part 1 I described how my dad tried to help my brother Mike via messages of his voice on a tape recorder that he played on a special speaker under his pillow as my brother was falling asleep. Those messages were intended to help my brother’s self esteem. Decades later Mike would tell me how much they damaged him, that his Dad must have thought so poorly of him that my dad had to repeatedly tell Mike via a cassette tape that he was a “good boy.” Why didn’t my Dad just say it to Mike’s face? Tell Mike that he loved him? Since I do not recall much affirmation from my Dad as the oldest sibling (who actually looked like a member of my dad’s family; Mike did not and this was an important point that my Mom told me many years later), I doubt Mike got any affection at all. But how could he? My father had none to give . . . Such realizations ultimately helped me to forgive my Dad and paradoxically paved the way to remembering more of my past, good and bad.
Perhaps this all sounds too crazy to believe. Maybe for you but not for me. My Dad’s experimentation didn’t end there though and it would be sprinkled in some manner throughout the years that my Dad was still around. One night when my parents were still together, my Dad had taken the crucifix down from the wall in my brothers’ room to make some kind of repair. When he didn’t come back with the cross right away, I snuck down the stairs to see what he was doing. I believe Mike followed sometime thereafter but I am not sure. The lights were on in the stairway but the basement was very dark, which seemed strange to me. The stairwell was placed in the middle of the basement area of our ranch home and my Dad had created two rooms on either side of it: a laundry room on one side and a workshop on the other. There was no door on either room so you could travel from one to the other underneath the stairs between the two rooms. The walls were a white stucco over concrete, the floor was poured concrete, and the entryway into each room was made of brown paneled walls with a light-colored wood trim around the edges. I spent a lot of time in both areas, fascinated by all of the tools in the workroom.
I slowly peeked around the edge of the paneling into the doorway of the darkened room and was frightened by the face of my Dad lit up by candlelight. What the . . .? He had a look of surprise on his face that I had come down there; evidently I was very quiet sneaking down the steps, dressed in my pajamas and socks. I came around to the width of the opening just long enough to see the cross propped up on a wooden table in front of the mirror of our old bathroom vanity (affixed like a cabinet to the side of the wooden staircase). The Jesus figure and front of the wooden cross shined in the glow of the candle held by my Dad. He was looking at the reflection of the cross in the mirror and doing something that I knew was weird and scary and that I shouldn’t be seeing at all. I don’t know if my Dad made his usual “Yaaaaarl” sound to get us out of there and back upstairs or if it was my sheer terror that caused me to turn and escape as fast as I could. Who knows where Mike was in all of this?! The rest is a blank slate in my memory. It was at least a day later before the cross was back on the wall in my brothers’ room. Seeing that nail hole in the wall without the Catholic cross hanging there sure was creepy until then. I don’t recall my Dad or anyone else ever saying anything about it ever again.
The fourth method that my Dad used to get me forget became the seed of agoraphobia that would plague me my entire life. Sure, it’s normal to be afraid of spiders. What is not normal is experiencing a fear so terrifying that you KNOW you will DIE and have physical symptoms that appear to be fatal when faced with anything larger than a tiny bug on a bedroom floor. Then there are the nightmares for days afterward seeing one even in a movie or a TV show. The fear never, ever goes away or gets better with exposure, talking, desensitization techniques, or whatever anyone tries to do to help me get it to change. I know, I have tried. It’s just not that simple especially when the origin for me was the deliberate use of an already fear-mongering creature to scare me so badly that I would forget the trauma somehow associated with it. I am not even sure how the association was made, just that I knew I would DIE if I remembered what happened that fateful day at my Dad’s house; the phobia reinforced the amnesia. Layer it all with demonic oppression where satan himself uses the fear, the memory, the remembering, the telling, the physical symptoms against you with lies and a worsening of all associated types of pain. They call it spiritual attacks. Perhaps the Lord allowed him to inflict me with convulsive episodes all these years? Perhaps it’s now a tool to uncover the truth of what happened so many years ago? To let me know just how bad the scenes were that it would take thousands of profound electrical misfirings of my brain to uncover it? Talk about a lock-down . . .
Maybe you recall the scene in first Home Alone movie where an 8-year-old boy named Kevin McCallister was accidentally left home alone then tried to outsmart a pair of thieves? One of the booby-traps he sets for them includes letting loose his pet tarantula. I cringed in horror as I knew what was about to happen at some point when the spider met its intended victim. One of the bandits screamed in fear as the spider crawled on his face when he was lying face-up on the stairwell inside the home. Granted probably most of us would scream holy terror as well! But we would not go catatonic in an effort to avert death. A true phobia is not a rational fear, not a moment of screaming that resolves thereafter. My Dad put the large spider on my face to get me to forget the trauma of three horrific scenes of terror in a single day. Equally as traumatizing as the huge spider was the image of black beady eyes of that spider staring at me. I really cannot say anymore right now. It’s still quite disturbing to put all of this together here. This realization only came to me recently and I have just begun the work of unpacking it. The effects of using fear to control me has resulted in lifelong behavioral anomalies, irrational fear, supreme difficulty studying pests and insects as a Master Gardener, avoidance behaviors, nightmares, and more. That is what a phobia does to a person. It starts a survival mechanism of the mind then continues despite its harm. And in the end, it did not get me to forget forever what happened, what I witnessed. Eventually I did remember. In the end, it just inflicted even more harm.
A fifth method was hypnosis although I don’t think that it was applied directly to me. All 3 of us kids were in my Dad’s workroom with him one afternoon when I don’t think my Mom was home. She was often at church doing work as President of the Altar Society at St. Cletus Church. I remember my Dad sitting one of my brothers on a metal stool, the one with the red vinyl top on it, and dangling a chain with a pendant on it in front of his face. My Dad instructed him to keep his eye on the pendant as it moved from side to side. My other brother and I were watching intently as my Dad went through some kind of sequence in a slow, low, calm voice. “You’re getting sleepy” or something like that. I don’t recall if either one of them fell asleep or changed posture in any way; I know that I was able to look around the room shortly thereafter, feeling like it didn’t affect me at all. My other brother was next. I didn’t volunteer. I was curious but also just old enough to know that there was something not right about what my Dad was doing with us. I wish I could remember what the goal was, if there were any special instructions my Dad tried to “suggest” under the influence of hypnosis but I do not. I may have asked what it was used for? Funny how a child is curious about what he or she is seeing a parent do even when it is exceedingly harmful and never should have happened. At a gut level, this experience made me resist the offer of hypnosis from every therapist I have had in my life who wanted to “help me” remember the forgotten years of my childhood. No, no, never!
We should never experiment with mind control techniques on another person when we are not trained to do so and I believe rarely even if the person of influence is trained. The Lord will bring back the memories in His own way and in His own time when the person is ready for them. More importantly I can see no reason for even a trained person to use mind control techniques like hypnosis on a child! It doesn’t matter if it worked for someone else. It’s not the same thing to use a method or object or saying or rationale for mind control over someone else especially without the consent of the other person. A child cannot give such consent as he or she cannot understand the potential risks. I also disagree with a parent providing consent for a child to be hypnotized. If what anyone is doing runs the risk of violating another human being’s right of consent at any age then it may construe undo influence and potentially abuse. We must filter our actions as an adult with what is morally good, what is right, what is fair, and what our Lord Jesus Christ instructed in His Word for how we should live; consulting mediums and mind-altering drugs and ritualistic sayings/prayers are taboo! Tapping into the unconscious mind runs the risk of inviting the supernatural world of which satan rules. Satan only seeks to deceive and destroy. Don’t try to get ahead of God! Please do not yield to “whatever works” Gentle Reader!
Stated another way, we must not “experiment” on another human being, especially a child, hoping for a certain outcome when we can easily run the risk of hurting him, her, or even yourself and your relationship if we don’t get it right. How do we know we will get it right? Neural retraining and the like are popular now in the treatment of Non-epileptic seizures and many chronic illnesses these days. If you must use mind-altering methods, please choose degreed and certified professionals with proven track records and decades of success. Further, I contend that a parent must never treat his or her own child even if degreed or certified in a given technique. My Dad was one of the most extreme examples of the damage that can be done when this happens. My Dad inflicted immeasurable harm that damaged me and my brothers. Although mentally ill, he was still responsible for his actions as we all are. Knowing that he was mentally ill, struggling to overcome it, and abused as a child helped me much later to forgive him and begin to heal. If my Dad did not repent and come to faith in the Lord, Jesus Christ, then God’s Word promises that my Dad will punished one day by a righteous God. He said that he came to faith in Jesus and I hope that is true; the Lord’s mercy and grace will cover him. I don’t like to think that my Dad will face eternal damnation; it’s just not for me to worry about as I focus now on what I have learned along the way and even some good memories that came forth with the bad ones. We did get to make our amends of sorts in 2011 and for that I am very glad, at peace. Further, I have come to understand that everything that happened to me was ultimately a consequence of a larger concept called “sin” and of living in a fallen world. This world is laden with evil led by satan himself. My ritual abuser willfully opened himself and even enlisted the power of satan and his minions not knowing that ultimately satan comes to destroy: he will not help you control your mental illness nor the unruly behavior of 3 innocent children! Sadly, my Dad battled mental illness his entire life.
For me it was not the same thing to know what happened to me as it is to become free of the impact it had on my life. The former is exceedingly painful. The latter is freeing. It’s not the same thing decades later to have a seizure disorder of unknown type and 1) have Doctors claim then that it must be psychological, for some kind of personal gain (yeah right, how sick is that?!) vs. 2) the electrical activity of seizures jarring locked-down memories of horrific trauma. Thank the Lord that I did forget such horrific trauma so I could survive, focus as much as I could on living. Years later it was explained to me that I didn’t have a seizure when the abuse occurred so there’s no psychological reason for me to have seizures now. I had flashbacks of really bad things for twenty years before the onset of convulsive episodes eight years ago. Each memory came back to me when the Lord ordained the timing, when I was ready to handle more of the truth. It took time to work though each nasty piece, lay each one at the foot of the Cross, and figure out how to go forth after reclaiming the full picture of a mixed-up, dysfunctional family, a once mixed-up dysfunctional Julie.
I just wish that now that I can see how the Lord used the seizures for some good in reclaiming my past that they would stop already! I still deal with numerous abnormal lab tests and scans that all could be contributing to the convulsive episodes and tics, confirming an organic cause. Years of treatments have alleviated, changed the pattern of, reduced, and some days even stopped episodes. The latest contributing factor is Autonomic Dysfunction. This diagnosis confirms why vagus nerve stimulation techniques have helped me so much, particularly those of the parasympathetic nervous system. It’s no surprise that it is the opposite, sympathetic nervous system that gets revved up when abuse happens and, for example, would have contributed to decades of difficulty falling asleep at night. My mind and body are more calm now in general than ever before. So I guess I can say that these nine years of battling serious illness has become a serendipitous opportunity to free my life from the various things that trauma and the serious illness itself did to me. I have a long rap sheet of medical problems but my spirit is lighter now than ever before. Good things have happened! This is true even though I still have tics or episodes virtually every day. It’s just taking a long time to find the CURE for whatever is their CAUSE. Lord willing, one day I will be healed!
In the book of Genesis, Joseph professes to his brothers that sold him into slavery the following:
You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.
Joseph’s brothers were jealous of a dream he had shared with them that one day they would serve him even though he was the youngest member of the family at the time. They faked his death! In the end Joseph survived, endured tremendous trials and years later, rose to fame in Egypt as second in command of the nation that saved the lives of many peoples because of his inspired leadership. When his estranged family came calling for help, Joseph ended up saving their lives as well in addition to reconciling with them. All was restored including his relationship with his beloved father who feared he would die if he lost another son. He didn’t. He gained a son he thought was once lost.
My Dad did very bad things at least partially knowingly what he was doing, akin to those of Joseph’s brothers. Then as the Lord showed me the abuse that my dad had suffered, our familial patterns of alcoholism and mental illness, and brought me to a saving relationship with His son, Jesus Christ, I was able to move from hurt and anger to forgiveness. That forgiveness had many layers as more truth came into the light and as I got to see him after TWENTY SEVEN years of estrangement from our family. I still didn’t know back in 2011 what I know now. The serious illness that developed into daily convulsive episodes came at the end of the year 2011 and after my dad had passed away. I cannot go back to my father and ask him about what has been opened up to me most recently. I simply have to trust the Lord’s timing in how all of this came together, put any pain at His Cross and leave it there.
Recently an expert instructed me how the Lord divinely sequences every detail in our lives. My understanding of this sequencing has not been the same in the past as it is now. I may weep in the moment but it doesn’t last very long. I try as best I can to live around this scourge, my thorn in the flesh perhaps. It is my firm belief that our God endorses and redeems everything we endure in this life as we prepare, we mature for our eternity with Him. Nothing that happens in our lives is wasted: not the good, not the bad, not the ugly. Nothing is hidden from our Heavenly Father either. He sees and He grieves for our suffering. He rejoices in our victories! I know that He will not only make all things right and new one day but also bring justice and reward for the faithful. The truth will come into the light. Believe it Gentle Reader! I do. JJ
The glass chamber is designed to match your body temperature while you complete the subtests of the Pulmonary Function Test. Mike did his job. Steve helped where he could. And for me?
The trauma was REAL.
The cardio-pulmonary work-up continued this past week with a carotid ultrasound, beginning of a 7-day EKG event monitor, and the torture chamber otherwise known as a Pulmonary Function Test (PFT). Perhaps the PFT is not designed to create stress but completing it between 5 sets of convulsive episodes was a real bite in the shorts!
I knew the risks for me for the PFT from having completed one about 5 years ago. We were unable to progress to the section administered after a bronchodilator medication because of convulsive episodes triggered in the first few subtests. So this time I asked my beloved to drive me to the hospital for the test and brought with me several rescue remedies that sometimes stop the attacks. With assistance to administer them I might get through it all. When Thursday came I was not motivated to head out the door for the hospital and after only 4 1/2 hours of sleep. Looked like it was going to be the same story, different day.
The first part of the test went alright as Respiratory Therapist Mike kept a close eye on me. I had given him the spiel of what can happen if I had a seizure attack, including the request not to call the paramedics if I had an episode! He said he understood and actually stayed calm throughout the entire ordeal. Seizure-like tics began after the 2nd subtest and most of the ones that followed. Steve graciously brought me the ice pack I had in my lunch bag which served to slow each episode once placed over my sternum. We continued and eventually got it all done like a good beating on a warm summer day.
The test that required you to breathe against resistance was particularly frightening. When deep breathing or panting re-triggers the episodes, I thought that surely breathing against the mouthpiece where my airway would be blocked would be good. On the contrary. It actually calmed me down considerably! Holy cow. Have we found another tool to help control these dang things? Mike said that breathing against resistance stimulated the vagus nerve. Well there you go again. I first started looking into vagus nerve seizures and treatment strategies at the beginning of 2018. This ultimately led me to see a Craniomandibular Specialist and the rest is now history. But here we are again. The trigeminal nerve of the TMJ and the vagus are interrelated cranial nerves. To date only these 2 of the many vagus nerve stimulation techniques I have tried have proven to be helpful. Turns out there is a difference between the sympathetic and parasympathetic fibers of this 10th of the 12 cranial nerves; the trigeminal is the 5th. We shall revisit this topic here again another day for sure.
The PFT was scheduled for about an hour. We left after 2 hours! Each time there was a trigger of seizure-like tics, we had to stop for me to struggle to pick up the ice pack on the laminate floor of the glass chamber, apply it to my chest, then wait for things to calm down again. The violent shaking wrenched my neck. I longed to lower myself to the floor and curl up in a ball, holding my head and neck. The pain, the pain. At home I struggle (or Steve carries me) to lie down someplace safe where I can grasp my head and neck to prevent whiplash. Not so during the PFT. My right leg banged against the metal frame and glass walls of the chamber a few times; my body tensed with fright as I feared falling off of the narrow stool and onto the hard, linoleum floor. No warm blanket was anywhere to be found. Mike and Steve just watched in silence each time. What else could they do?
Times like these finds me terrified of falling and getting injured. Gratefully I have never fallen even after thousands of these wretched episodes. But initiating movements of any kind to either speak, break a fall, or otherwise create safety exacerbates the directionality and velocity of the seizing; this in turn creates a high risk to fall or get injured! Too bad that I am awake to remember all of this hell unlike an epileptic seizure where the person is unconscious. (Well it’s probably good so that I don’t have the injuries that can come with falling after passing out.) I guess it’s my own form of grace manifest as survival mode. Tense my muscles to prevent of a fall but trigger a rebound: increased rapid-fire, uncontrolled shaking of an appendage or two that may bang against whatever is nearby. Metal frames and glass walls. Still can’t speak most of the time. Breathing? Yeah maybe. Oy vey. I hate this!
It took awhile after the PFT was over to regain enough muscle control to walk out of the chamber of doom to a chair across the room. Perhaps it will be diagnostic for the cardiologist later this month as to why forced-breathing maneuvers trigger such bad episodes? Maybe the test results will show something this time? Everything flooded my mind as I tried to be pleasant to the two men staring at me the whole time who were powerless to do much to help. They were both most kind. I could see it in their eyes above the masks they both wore. (I was the only one allowed to remove mine! Go COVID-19!) Mike and Steve remained standing as I slumped into a hard plastic chair in the opposite corner of the room. One of them asked if I needed anything but I just couldn’t speak very well yet to respond. Managing the wires from the EKG event monitor, holding the ice pack to my chest, and groping for a snack bar in my lunch bag for something to revive me was about all I could handle. Steve opened the packaging of a Clif Nut Butter Bar and helped me get a drink of water. He knows the routine well. Love that man!
Cracking jokes has been my way to bring humanity to this hell when someone new comes along for the experience. “Welcome to my nightmare.” “I guess I’ve completed my involuntary exercise program today.” Or something similar are my usual bylines. I let a few fly. Before long we were leaving. I was walking verrrrry slowly however.
Somehow I got through a telehealth medical appointment a few hours later followed by a full day of several long blocks of sleep. Thankfully I had made some food ahead of time and thankfully Steve was willing to bring me a meal later on as I began to recover. My Skype appointment on Friday needed to be cancelled and I declined an additional make-up appointment from a second Provider. I was too weak and shaky. About all I accomplished on Friday was a load of laundry and achieving many levels on a word game app. The pup got lots of scratches too.
Two days later I realized how traumatic all of this was. A dearth of tears busted out after yet another bad episode and eventually I got the story typed out here. Perhaps someday these wretched convulsive episodes will stop. Maybe my beloved Steve and I will actually get a peaceful night of sleep on a regular basis, together. Maybe my life will be about the volunteer stuff I get to do here and there instead of medical appointments every week. Seems like we are getting closer than ever before to the mechanism of action of what triggers and what stops these waking, convulsive episodes; I have a few rescue remedies that keep me out of the emergency room these days. Yay God! Lord willing, I pray and plead, my Jesus will mercifully bring me to complete healing. Maybe someday soon? JJ
Rainy weather working its foggy magic on a landscape is beautiful. A rainy day encourages introspection. Or at the very least a nap. I love the rain in all of its spirited and benign forms. But we have had rain day after day without much respite. This is rain of a different sort. Too much rain foments rot both above and below ground. Too much rain spoils blooms. Too much rain dampens the spirit. We have had all of the aforementioned.
Gathering medical records and other documents, making travel arrangements that accommodate my sensitivities, and putting together a timeline of the serious illness I have been battling for 8 1/2 years has been an emotional process for me. Just surviving to this day has been a traumatic experience. The blessings are there too yet not as clear right now with the hundreds of sheets of medical records behind me as I type this post.
I have endured so many dead ends and dashed dreams for recovery, physical damage from thousands of convulsive episodes, tens and tens of thousands of out-of-pocket expenses, and so many losses on every front of our lives. One truth is clear that I would not have survived this far without my faith in our Lord, Jesus Christ. He was my Rock when my breathing would not start in the darkness of night or my legs would not move to get me to the bathroom. Both my beloved Steve and my Lord carried me through it all to this moment in time.
Regardless of what has gone before us, Steve and I are pressing forward, hopeful for a good result at an upcoming consultation at the Mayo Clinic. For the first time since the onset of this serious illness, I get to see one of the top Doctors in neuroimmunology at THE top medical facility in the country. That is humbling. I am grateful.
Now is the time to pray for a cure to the daily convulsive episodes. Lord willing, I will be well! Thank you for your love and support, Gentle Reader. Love to you, JJ