It’s not the same thing, Part 2

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.

Genesis 50:20

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

Pics of my Dad as a boy and with my Mom

It's a Mad Mad Mad World NOT!

Two million or more people moved from wandering in the desert for some 40 years to a dedicated process of preparing to realize their mission, their dreams. Virtually every need had been met over 4 decades, every action guided by the God of the universe that led them there, and all transpired with displays of majestic power to encourage them along the way. They were free after years and years of harsh slavery, multiplied fruitfully, and were about to receive all that was promised to them. What more could the children of Israel have wanted? In their own minds, much more. They griped, built golden images to worship, and failed to heed their leaders over and over again. Many were punished and died as a result; many others just followed along while some questioned where was God? Gee, these people would make “good” Americans right now!

We gripe when our needs are not met within tiny frames of time. We worship people, places, and things instead of the Lord our God. We fail to respect the very leaders the Lord ordains for our lives whether it be our pastor or the President of the United States then wonder why we personally don’t feel respected either. We resist the natural consequences of our actions, fight for some lofty goal of social justice that will never fully arrive in this fallen world, and in doing so push ourselves further away from the God of mercy, true justice, grace, love, and peace. It’s a mad, mad, mad world right now. And the more we strive in our own strength, the more we will squelch our lives of the gifts of this unique time in human history. We are at war with an enemy more “unseen” than the (.3) micron coronavirus-19. Our enemy is our very own pride. A pride that separates us from God and each other, more than “social distancing” ever will.

I live in the heartland of the United States where hard work used to pay off. Whether you went to college or worked your way up the ladder of a manufacturing plant, worked in the trades, or built a small business, you could feed your face and that of your family if you just worked hard. No matter what life threw at you, you were going to be o.k. eventually. Eventually I would come to know my own work ethic as a virtue instilled by my Lord and Savior, Jesus Christ, who gave me the skills I would need to navigate life until I found a personal relationship with Him. Thereafter, my strength would not be enough to survive: the tests and trials were too great to overcome them on my own. And by seeking His face, my Lord sustained me, provided for me, grew me into the woman that I am today. Often I don’t feel these gifts of mercy, true justice, grace, love, and peace. More importantly, I know each are there all of the time no matter what else is going on.

I’ve had a rough go of things again lately. The serious illness that I endure has only become more complicated with new thyroid issues, new dental infections that need specialized care. The latter simply cannot be addressed for weeks because of the quarantine recommendations of our government (and governments around the world). There is very little that me and my beloved can do about the need to wait for medical care, even though this type of infection is known to worsen a person’s health. I also need to find a new clinic in our smaller town to provide the infusions that I receive twice per month; they have helped keep me out of the emergency room for over a year. But only essential and emergency care are now provided at virtually all medical facilities that are preparing for the pandemic. I understand these needs. I really don’t know if several hours per day of convulsive episodes qualify for essential and emergency care when no one has figured out how to treat or stop them yet. Specialized dental care twice in the past made a BIG DIFFERENCE, however. What shall we do?

I know that the Lord sees and grieves my suffering. I know that the Lord hears and grieves the suffering of people sick with this new virus and who are afraid of all the effects it has had on our society to date. I know He hears the cries of His children whether we have professed love for Him or not. You know that we are isolated and hurting. We do need you now. We are like your children of Israel wandering in the desert, needing to see the cloud over the tabernacle by day to know that you are near and what to do. With the presence of so much evil, the consequences of living in a fallen world, the events that puzzle us but you mysteriously have ordained, the leaders over us who shun you, and the tearing apart of these once United States of America, WE NEED YOU NOW. Might we catch a glimpse of Your fire, Your glory to help us, to help me carry on this night?

In the meantime Gentle Reader, please do take care of yourself and your loved ones. Here is my prayer for you as you seek the desires of your own heart. I submit to you that you will find everything you want and need in the person of Jesus Christ.

Thank you for being here with me. Godspeed one and all, JJ

From Wondrous Works Shop on Etsy

I’m not going to lie

Just when you think you have figured something out, it’s really maddening to realize that there is more to know and you simply are clueless!

laxative, medical humor, gallows humor, Lyme disease, chronic lyme, catamenial seizures, non-epileptic seizures, coping with illness, chronic illness Hope Beyone

Hi, my name is Julie and I am the reluctant writer behind this blog after I got sick on October 11, 2011 and never recovered. I started my journey here online in August of 2012 after reading the blogs of 2 acquaintances. Journaling had been a life-long practice of mine, beginning with a diary that I wrote as a girl. The cover was shiny and flowery in white, pinks and reds. It had a little flap over the edge of the pages that I could lock with a tiny key. That still wasn’t enough to keep out my brother, Mike, to my horror! I don’t recall what I wrote but I do recall that he teased me mercilessly just the same. After that I got better at hiding my private things.

Flash forward many dozen years and the trend these days is to pour your heart out in a blog to the watchful eyes of the world. Just when you think that no one really cares about your stubbed toe or smashed fender, you realize that some stealth follower from another part of the world relates and responds to you in kind. I find it a kinda special occurrence and a reminder of our shared humanity. Still there are some topics better left untouched and facts left unsaid of course!

Be careful in sharing good news. If you are disabled, the government might use your day of reprieve as evidence against you that your life is restored when clearly it is not. That examiner probably won’t read the hundreds of other blog entries that describe some personal hell of one type or another. Like the convulsive episode I had this afternoon that yielded only after a prescription intervention, followed by a 5-hour nap. Or the second seizure attack a couple of hours later that yielded only after another type of remedy that actually worked this time. Thank the Lord that my beloved was home and willing to help me. I am grateful. And it all came just hours after helping our local Park while sitting here alone through the night to update their website: a good thingy!

If you happen to have dysfunctional family members or friends reading your blog then there might be entirely different consequences to complaining about blah, blah, blah over and over again. To this person I say well then don’t read my blog or (limited) Facebook posts honey! How about minding your own business a little more? Isn’t keeping a positive attitude, getting up in the morning, saving enough money in the bank for emergencies, and the like hard enough to manage these days than to meddle in someone else’s daily drama too? Do you really think I would fake this hell for self aggrandizement? I am not that kind of a sick puppy lady! You’ve got it all backwards. I’d rather remain anonymous or conversely, receive recognition for an admirable accomplishment. Like raising a rank as a Master Gardener largely from publishing our county’s newsletter in the middle of the night. Or volunteering in a public garden despite the heat exhaustion that came alongside many of the hours out there. And it all came on the hundreds of days each year when I did not have to crash back into bed, unable to function normally. Got it?

So where does a thyroid biopsy to rule out cancer fit into this muddied scenario? Will having major surgery thereafter legitimize my enduring serious illness and the varying opinions of persons on the sidelines cheering at times or throwing barbs at others? Nope. Others simply give witness to your life for the parts that he or she can see, to the extent that he or she can step outside of his or her own story. And none of us can do that fully. The peeps who truly love you will come closer to a sense of understanding. That is a gift for sure. However, it is only in a personal relationship with the Lord, Jesus Christ, in a life surrendered to Him that you will feel completely validated, loved, understood, accepted, and forgiven. He created you and ordains all that you are, what happens, when your life begins, and when your life will end. All for a purpose greater than anyone else will ever know. Lord willing, He will grant you insight into some of your life’s meaning along the journey and be merciful. He loves you so!

I’m not going to lie. Everything from what other people have thought and will think about me to questioning the Lord’s plan for my life is smeared across a messy collection of hundreds of blogs over these 8 years of chronic illness. Will it be cancer on top of everything else? Cancer: the one diagnosis that suddenly legitimizes one’s fears and suffering and need for compassion? So what. This stuff could really mess with my head. But what is really going on inside my mind? Not that much really. I feel like my Jesus is simply carrying me through it all. I feel numb inside and out. Often my thoughts are blank. When the tears come they are shallow, like a reservoir running dry after years of siphoning off for this trauma or that one. There’s not much left in my fuel tank. With no catharsis left for my angst, one might wonder who or what will nourish me now?

The answer would have to be the Lord Himself. Hold me please. I hereby place my journals, my blog, my illness, my life in your lap. Cover the Gentle Readers out there with your loving care too. Send forth your angels and Holy Spirit to care for, to guide us all. This is a tough world to live in these days. The suffering of your saints is great. We need you NOW!

When you are afraid of everything

Every once in awhile I emerge from the fog of battling serious, ongoing illness and realize that the way I view the world is not the same as that of others around me. I am often afraid of everything!

Folks are dressing up for special Christmas celebrations and with it comes perfumes, colognes, hair spray, and lots of pretty/smelly stuff. I just practice what I call a “virtual hug” during greetings and keep my distance from any close contact where something might rub off on me. It’s awkward but works better than being triggered.

Venture out to a social gathering and I’ll wonder what particulate matter rests in both the upholstered seat upon which I am sitting or the coat that the person next to me is wearing. The mycotoxins from mold persist forever and easily transfer from one cloth surface to another. How many of us have our winter coats dry cleaned each year or launder them? Our vehicles and outerwear can carry with them the toxins from anywhere we have visited in the past. Some items simply cannot be cleaned of these toxins. And even if they can be cleaned, who else but another “mold avoider” uses anti-fungal agents like we do when washing clothing? Or tosses coats in the dryer under the sanitize cycle before putting them back into the closet or wearing them again? Probably nobody I know!

We brought a nasty scent home with us inside our new-to-us truck, from a recent trip. The sour smell is from a water-damaged building where any contact has the potential to trigger a violent convulsive episode. Maybe this low level of exposure that remains will somehow de-sensitize me to this type of mold? Yeah, right. The portable ozone machine that we really can’t afford right now, came in the mail from Amazon today. I’m going to try to zap that stinky smell out of there soon and hope that the remaining fragrance in there from the dealership goes with it. Cleaning, vacuuming, essential oils, charcoal packs, or baking soda haven’t worked on the latter. Driving with the window slightly open hasn’t been enough to ward off fatigue and the risk of pre-tic symptoms when I am in there. I need to drive to medical appointments. We will fix this soon, Lord willing.

Sharp, loud noises have become an instant trigger again and quite a nuisance. Twice in the past 10 days, my husband initiated an innocent action that resulted in a high-pitched, short, loud “olfactory stimulus.” Immediately I felt my ear drum move inward and a convulsive episode ramped up quickly thereafter. These are really bad. One happened last weekend as I was riding home with my beloved from a sweet date viewing Christmas lights, listening to music on the radio coordinated with each display. I could barely open my eyes for the last display as the head-banging had not yet subsided; my biggest fear was that the hand I struggled to push near my head wouldn’t adequately stabilize the wrenching of my head/neck. Steve fed me a rescue remedy when we got home while I still sat in the frigid air on the passenger seat of our truck. My left leg dragged as he was eventually able to guide me into the house (with me struggling yet determined to try and walk under my own power and not be carried). We removed my outer layers of clothing in case the scent of the truck was on them; I crashed into bed and slept for over four hours. I woke up in the middle of the night very hungry, ate a very late dinner of sorts, and was not able to sleep again until after sunrise. The new day was trashed. We had already cancelled attending the Holiday Pops concert downtown to avoid loud music. But I love Christmas decorations and music! This really sucks man.

Everywhere from public restrooms to the open door of a neighbor’s home exudes air fresheners these days. A package of new neighbor was accidentally delivered to our home so I thought, neat, I’ll take it over and get to meet them. A waif of something fragrant washed over me as soon as the sweet gal opened the door; “c’mon in!” she offered in a friendly tone. A quick, I can’t due to sensitivities nearly killed that friendly encounter. Fortunately the late fall day was a little milder and she didn’t mind chatting on her front entryway outside of her home. Sigh.

I would LOVE to invite all of our new neighbors over to get acquainted later this Winter. We did this very thing with our neighbors before I got sick and it was a sweet time of fellowship. FOUR of the eight homeowners have turned over in our neighborhood court in which we live. Someone needs to organize a get-together and I wish it could be me and my hubby! I simply cannot do that. I’ll have to wait until the warmer weather comes and we can sit outside on our patio. I guess that’s alright too . . . five months from now when the weather thaws and warms.

We still practice a relatively high level of extreme avoidance that is getting OLD after all these years. Perhaps progress on treating a particular type of sinus infection will reduce my sensitivities. Let’s repair that blood-brain barrier already! I am grateful that I can finally treat the chronic MARCoNS infection that is characteristic of biotoxin illness. This makes me hopeful that maybe more than the olfactory cranial nerves will heal as well. Over time, of course. More time. The trigeminal nerve that gives rise to TMJ pain and had triggered episodes has already healed quite a bit with my specialized dental appliances from a craniomandibular specialist.

These are only a few of the examples of how chemical sensitivity, mold sensitivity, Chronic Inflammatory Response Syndrome (CIRS) play out in a person’s life. Gene expression gets turned on for persons with particular HLA types for mold illness, contributing to abnormal responses to everyday sensory stimuli. Turning it off or lowering it requires removal and avoidance of triggers, various types of testing (home/work/school environment then specific lab testing), dietary changes, and a hierarchy of expensive treatment protocols. I am grateful that not only am I able to tolerate a complex combination of nasal treatments, there are fewer food triggers of symptoms now than in the past. Some of the labs used to diagnose CIRS have normalized or are only slightly elevated. My local Functional Medicine Doctor versed in these protocols will re-test me for MARCoNs early next year. I am hopeful that I can finally clear this infection; the sinus headaches have already subsided. (This Doc is so very nice to me as well! Love that!) The laundry list of other medical conditions that has come alongside this nightmare are not nearly as disabling as CIRS. I never lose hope that many can get better or even be cured this side of heaven, Lord willing.

When you are afraid of everything, it is really really hard to want to try new things, meet new people, or go to new places. My confidence in virtually every aspect of living has suffered. Expertise, proficiency, and tolerance for the work environment of my profession of occupational therapy have eroded and I am not sure that I will ever be able to get it back (or even tolerate working with all of the potential exposures of a clinical setting). Indeed I have developed new skills during this period of time and you are reading one of them right now. I am grateful to have designed several websites and am the editor/assistant editor of 2 publications. Medical research has become a necessary pursuit. These are worth something I suppose and can be done in the middle of the night when needed. Gardening has sustained me throughout these 8 years of battling a serious illness and 6 of them with biotoxin illness in particular. Sometimes I am taking care of our yard or a public rain garden after dark when I feel better but hey, that’s what flashlights are for, right?

Perhaps I need to re-read John Maxwell’s book entitled, Failing Forward. While this time in my life is not my failure per se, the effect of repeated trials and traumas is very similar. Better pull it out again. In life, the opposite of fear is courage and perseverance is a requirement to succeed thereafter. Somehow I do although this has been one of my greatest challenges when feeling like a beaten puppy. Further, some would say that the opposite of fear is love as in the perfect love that comes only from our Lord and Savior, Jesus Christ. For if we truly know His love then nothing in this world can separate us from it, including the powerful tool of fear, fear of failure, fear that things will not change, fear that we are alone to suffer, and so on. The truth is that those in Christ will never again be alone, the same again, or away from the Divine plan and purpose He has for our lives. Knowing this truth brings not only courage to go on but hope. And my Jesus’ love and care has helped me move forward to even get to this day, to think that one day even if it’s in heaven, all will be made new, right, and good. That’s the kind of love in action that obliterates fear.

Sigh. I’m tired tonight. The shingles is healing. Some medical questions are now answered resulting in closing some doors and leaving others precariously open. I’ll need to meditate on these topics some more. Still, I think I have a better perspective, more hope than when I started writing to you, Gentle Reader. Do you deal with fear too? JJ

He Ain’t Got Drowned, Thank the Lord!

Warning:  Read this until the end!

He left before I woke up and long after I was up in the middle of the night baking him cookies for the race.  Another strange night it was.  I had crashed early in the evening, many hours before my bed time . . . not that there is a usual bed time, that is.  I am still up very late about 2 nights per week yet that is a huuuuge improvement from my years as a night owl.  But my tummy hurt and I just couldn’t stay asleep.  All I could think about was those cookies that I wasn’t able to bake as promised and the risk of my beloved River Bear collapsing in the river the next day.  So I got up and started mixing up the ingredients sometime after 2:00 a.m.  The story was unveiling vividly in my mind as the scent of baking chocolate chips and Irish butter filled the air . . .

My beloved would be paddling a new-to-him Wenonah J203 carbon-fiber marathon canoe, probably putting him at the back of the more accomplished river rats on Saturday.  They all would be pushing their limits in the cold and rainy weather, trying to get back into shape for the upcoming race season.  RB would be no different.  The only difference is that he would be competing with a sinus infection on top of some chronic breathing issues.  The  realization of the risks was just enough to drive the mind wild of a kayaking-turned-canoeing “widow.”  Yeah, I don’t see him much during the Spring-Summer-Fall racing season so temporary paddling “widow” I become!

Today was especially of concern.  If he got a coughing spell when on a remote part of the river, spread out for miles over the course with the other dozen-or-so racers, there’s a good chance that only a real bear in the woods would have heard him struggling.  His  brown, furry cousin probably would not have minded my beloved’s residual garlic breath as he munched on his serendipitous, soggy lunch feast.  But that was not the worst of my worries.  More likely another racer in an equally tippy performance kayak would see my beloved slumping forward, splash into the water to save him, and be unable to do much of anything about it.  I foresaw in my mind’s eye that probably would be LB, of course.

She in her 4-foot 10-inch frame would jump out of her boat, neither one wearing a life jacket despite the cooler water conditions, and wrestle with RB’s muscular/lifeless body as it flopped into the current of the Tippicanoe River:  he almost 70 pounds her senior and her struggling to keep both of them afloat.  The river would win and down he would go.  She would be traumatized and exhausted from the fight against the swirling water, the soaked mass of a man, the expensive boats and paddles flowing downstream, the desperate feeling of not being able to save him no matter how hard she tried.  I could see it all in my mind’s eye, of course, in an instant.  I had been in a similar situation myself just 8 years ago during my first encounter with a performance sea kayak on the Allegheny River.  I feared for my life!

Back at the boat launch or maybe when she could signal for help, LB would desperately reach out.  The fellow racers would leap into action, scouring the shoreline for signs of the man who teased them hours earlier with a craft beer for any seasoned canoeist who could beat him on his maiden voyage that day.  They may or may not find him or his gear.  The rescue boat would eventually arrive, find and take his body to a local hospital for the fateful pronouncement.  The paddlers would stand in a circle at the take-out speechless, none volunteering to call the wife over 100 miles away who had sent along home-baked cookies for the annual meeting afterwards.  No one would be brave enough to call her or maybe the Fire Department would at least leave a message?

Do they ever really tell you all of the news anyways that you need to know when you get a dire phone call at a time like this?  I would then be in my own racing seat as I made the 2-hour drive to the Lafayette area, wondering if I had the right name of the facility where my RB was being held under refrigeration.  Perhaps I would drive from facility to facility searching for my loved one?  And what would they tell me when I found him?  Would anyone be there to tell me the story of what happened?  Would the racers have taken a luscious cookie but gone on home anyways, themselves suffering from the trauma of the friendly competition gone wrong?

And what would I do next?  What about the pup at home, the phone calls that needed to be made?  I would probably have to stay over a few nights to release my hubby’s body to return to our home town on Monday morning and begin preparations for the worst event of my life:  a funeral!  I have done this in the past a few times and it is exceedingly and painfully difficult.  Oh dear, what would become of my elderly family member out of state for whom I have become a measure of a caregiver?  Where would my beloved’s children stay, what would I say when they arrived grieved beyond belief from all over the country and 2 foreign countries?  Holy cow.  Maybe I would just sink and die myself right then and there rather than deal with it all.

Or maybe not.

*************

Twelve hours and 2 naps later, I heard the side door open.  My River Bear was home!!!  I was in shock.  Where did I just go in my mind and my heart for way too many hours?  In what or where have I placed my trust?  And why the heck am I so very needy, so weak, such a worry-wart when the Lord has been faithful to lead me through horrible tragedy dozens of times before.  Is this mental exercise really helpful at any level?  The answer:  NOOOOOOOOOO!!!

I have come to realize that there are a couple of coping mechanisms that come with enduring serious illness for many years that don’t work very well at all in a fit brain.  One of them is living each day with a sense of impending doom.  When virtually every night and every morning for the past 6 years was met with violent convulsive episodes, I lived every day with a sense that bad things were always going to happen.  It was just a matter of time before they did.  Well guess what?  The convulsive episodes don’t happen every night or every morning anymore!  I have got to let go of this “stinking thinking” as we used to say in my 12-step group days.  Husbands virtually  always come home.  And if they don’t right way, they usually have an amazing story to tell that makes you fall in love with them even more!

Another coping mechanism that got exercised in writing this story was that of always needing a contingency plan.  More recently, every time I would plan to do an activity at home or elsewhere I set up alternatives in my mind of what I would do in case I got sick.  I told RB my plans for the day, I had every “rescue remedy” I could think of in a lunch bag with me, and kept running errands until I was exhausted — just in case I was too sick the next few days to leave the house.  As you can see from the bit of paddling fiction above, I listed a few of the questions running through my mind but in my head, many more options and scenarios were playing out in my mental tool box.  What a colossal waste of physical and emotional energy!   While a “scarcity” mindset may work in times of famine or flood, I really don’t need it with me anymore.  Me and the Lord will figure out whatever may come my way.  Geez!

Of course an obvious failed coping mechanism is last on my list today:  a false sense of control.  I cannot predict anything that will happen, good or bad, and neither can you.  If I truly trusted the Lord with my life in times of tragedy and triumph then I would not need these fantasy games to cope with the fact that I have a REAL MAN who LOVES ADVENTURE no matter if he is sick or well.  That makes him who he is!  And his passion for life makes him the man in whom I fell in love over 10 years ago.  No wimpy dude over here!  He pushes the limits to the admiration of his peers and sweat of his competitors because that is just how he is wired.  I guess I am still understanding how different we are, how different the Lord wired each of us.  It is a beautiful thing really.  And, Lord willing, my beloved will always be home at night in pretty darn good shape too, I will add!  :J

Proverbs 3:5-6 (NIV)

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight.

So the next time my man goes out to do that which he is called to do, I will pray for him and for me both!  I will not respond with fear but anticipation of some great stories in which I may one day join in, Lord willing, as I get stronger each day.  The day is coming soon when I will want to venture myself out into newer, uncharted waters, so-to-speak knowing that my Lord and King is already there, cheering for both me and my River Bear.  This could really be a fun summer after all.  I often cheer, “Goooooo Steeeeeve” from the side of various rivers when my beloved’s paddle hits the water at the sound of the starting gun.  Maybe it’s time for a little, “Gooooooo Julie” too?

Stay tuned.  There’s always another story waiting to be told around here for you Gentle Reader.  The water awaits!  JJ

Stellar, SR, paddling, woman, kayak, kayaking, wing paddle, carbon fiber
Me in my Stellar SR surf ski in 2011

Scorpius, outrigger canoe, OC1, Hawaiian, boat, man, paddling, life jacket, racing, buoy, turn, marathon, River Bear
My River Bear leading the pack at the bouy turn on the St Joe River, Fort Wayne, Indiana in July of 2015