Gently he pulled the brush through my hair as if each stroke was a special salve for my soul. You could hear nothing in the silence, not even his breath or mine. The darkness fell between us. The moment hung there in time. We had just witnessed so much . . . there was no need for words. Only love moved from his hand to me, gently freeing the hairs once tangled in the madness that had just gone before us. You might see this as an act of romance I suppose. But this night no romance would explain this kind of tenderness that now drifted between us. We simply enjoyed the silence, the calm, the love lain there slightly wounded just up from the floor.
That love was near me that night alright, well within my grasp. Oh I felt it with each stroke of the brush that was the tool he could reach first in the awkward darkness. I felt it from his warmth standing closely behind me as I sat with my legs uncomfortably collapsed underneath me on the hard tiled floor. The rug, marred with uneven loops from the dogs paws underfoot where she slept each night, gave little warmth. My hair was wet and so were my shoulders. The stuggle that came with forcing myself to wash my hair in the tub at the tail end of a convulsive episode had subsided into a senseless stupor. With my broken sentence my beloved found my grooming basket under the sink. It made no difference what implement he chose. His love would find its way to me with soothing swiftness followed by the tempo we might take one fine day, walking along a seashore somewhere beautiful.
Oh that I should have such an opportunity again! Will his capable hands finger their way through my auburn hair blowing in the warm sunshine of a summer day? Would he tighten the drawstring clasp beneath my chin of the paddling hat matched with our tandem outrigger canoe as we headed out onto the glistening lake? Or when his arm slips around my waist as we laugh at our pup racing along the stream of a wooded path, will I forget that our tender moments were once matched with sorrow so deep? I do hope so, Gentle Reader. For all of us who suffer what we ought not to endure, I do pray that restoration, healing, and mercy will cover what was once ugly with that which is lovely again and again.
Until that glorious day for me, I shall keep my eyes fixed on the sunshine streaming through my bedroom window. I know by Whose creation it shines and that one day all will bow and marvel in His glory, fully well, fully at peace. The love of our Lord, Jesus Christ will comfort and redeem our suffering beyond what the ones we cherish could ever do for us. And yet their heartache for sharing this journey with us shall be rewarded too. The darkness shall fade away forever for all of us one fine day. Only His light will reign and the darkness shall be no more. In that day my friend, we will comb the heavens never finding an end to joy for all who believe, for all who hold out for the hope of heaven. Together we will dwell in the presence of the King of Glory! Yes, indeed.
Sigh. That day is not here yet. What is here is the love of my life holding my comb in the shadow of night. He lifts me gently into bed and covers me with love that I could never imagine in the past. He is my Jesus with skin on when I need them both. I am so blessed. How could I ask for more?
There’s a Barbara Streisand song with lyrics that go something like this:
If we had the chance to do it all over again, tell me would we . . .
Could we . . .
The way we were.
It’s not that I would like to go back to my former self or anything like that. I have had chronic pain for most of my life and lived with pain inside my heart for longer than that. Many of my own mistakes were downright damaging. Still other experiences damaged me and it would take until very recently to be free of their dark spiritual underpinnings. The freedom I experience in today from the drama of yesterday’s trauma was worth the good and bad spent getting here. But there is one part I am not sure what to do with . . .
I was never really physically fit and virtually always held a critical eye toward my physique even when at my ideal body weight. All that did not seem to matter to the stream of the male persuasion that came my way, ever since I was twenty years old. (Not sure what they were waiting for before that!) I always rode my bike as a kid EVERYWHERE. I did not think of it as exercise at the time, just a means to get me to the home of a friend. Several times in college I tried running around the sidewalks of the sprawling campus. “Library Hill” was a killer! Maybe I should say that I ran on most paths except the 27 or so degree incline of Library Hill! Carrying a full load of books up and downhill to class or to study late into the evening at the library should have earned me an extra degree in something or another!
What I miss most is the innocence of moving without thinking about it. Every day lately brings stark reminders of the convulsions that have returned. Every day brings a new version of shaking that hurts my neck the most and leaves some version of a headache behind. Every day the hope of exercising for the enjoyment of it alludes me only because I cannot; I actually had grown to like high intensity workouts before I got sick 3 1/2 years ago. Even with chronic pain I worked out with weights, unloaded my truck bed filled with sod/dirt/mulch, and kayaked for a couple of hours each week. I loved being strong.
Today I miss being strong. The trauma of seizures and convulsions have taken their toll. The sickness after an episode usually lingers for hours, days. I never really know for sure when the next episode is coming although the bedtime and waking-up patterns have been fairly consistent throughout this ordeal. Somehow despite my weakness, I HAVE NOT GIVEN UP for more than a day. Yesterday Steve and I went for a walk with our pup, Elle though most of the time the walking is through the halls of our home or a medical facility . . . or this past Saturday’s date night to the grocery store. It’s something, eh?
O.K. so I am bummed out. I have missed writing and did not blog so as not to bum you out, Gentle Reader, in reporting that the surgery did not stop the episodes as I had hoped. There are tiny improvements and for these I am grateful. I think I’ll need a little longer to recover and clear the anesthesia completely out of my system. In desperation I went on a water fast for 24-hours last week. It was awful! Amazingly I did not have seizures until the 24th hour! I believe the Lord gave me the wisdom through it all to start a ketogenic diet so new research and a new direction began the next day.
A ketogenic diet is a high fat diet where the fat becomes fuel for the body instead of carbohydrates. The version for seizure control (generally used for children) is unlike the keto diet for weight loss in that fats are consumed more than protein “macros.” Grams of carbs are the tiniest portion of the three. The increase in ketones are measured in either the urine or blood and thought to be the mechanism that brings some level of seizure control in 25-50 percent of children. In children the diet begins after a 24-48 hour fast in a hospital. Hmmm. My great Physician led me here after my own fasting experience too. So with the MyFitnessPal nutrition app in-hand, I am moving towards the ideal ratios of fats, proteins, and carbohydrates. Good news: that means lots of bacon! And at least I am off the pureed diet now!
The way we were. Can it be that it was all so simple then? Or has time re-written every line? If we had the chance to do it all over again, tell me, would we? Could we?
Perhaps the real longing requires me to not look back at all. Then what is it Lord? Fill this emptiness, please. Ease this hurting. Thank you for new tracks to run on, so to speak. I still need you desperately to guide me. I realize that I may not be alone in this desire you know. Please comfort the Gentle Readers out there who need you too. JJ
EMU Halle Library with another runner testing his strength!
Learning from one’s mistakes is a given for any reasonable person. We must learn from our mistakes or we will sucuumb to foolishness in due time. Learning from the unforeseen negative consequences of a reasonable decision is more difficult yet still a given for any reasonable person. Figuring out how to do this is, well, rarely given!
In the event a reasonable person makes a difficult decision after heartbreaking circumstances leading up the decision, and the outcome is good, we all celebrate. In the event a reasonable person makes a difficult decision after the heartbreaking circumstance and the outcome is not good, we all are either: 1) sad and hang in there anyways or 2) indifferent then simply walk away from the painful truth for a time. And it could be a long time, in my observation. Some folks watching you may never return. When folks have left my life my response has wavered from “let them go” to “seeya next time.” Both are the same really and have served to preserve my ego, my character.
How I feel about the good or bad of the total circumstances must not drive who I choose to be. In other words my identity must not become destroyed by the mistake, the misfortune. My character must remain fixed on the fact that I am who Christ has made me to be. He knows me, love me, leads me, and will be there whatever the outcome of a situation may be, long before I ever know about it. So using the insight of John Maxwell and applying it to my ramblings this April Fool’s Day, no matter what may come I must go forth with wisdom. The best source of wisdom is the Bible and the words of my Savior, Jesus Christ. Here’s some I like today:
10 He replied, “You are talking like a foolish woman. Shall we accept good from God, and not trouble?”Job 2
7 The fear of the Lord is the beginning of knowledge, but fools despise wisdom and instruction. Proverbs 1
23 Search me, God, and know my heart; test me and know my anxious thoughts. 24 See if there is any offensive way in me, and lead me in the way everlasting.Psalm 139
8 Therefore, there is now no condemnation for those who are in Christ Jesus, Romans 8:1
6 being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ;Philippians 1
Well cool beans. Now that I have settled the matter at least in my own mind, I will put my feelings of foolishness aside. I mean, how could I have known that a painful, expensive dental procedure that I had researched for 9 months would only get rid of wretched convulsions for a couple of days? Holy cow. Or is it holy crap? Crapolaski? (I’m Polish dontcha know.) Of course right away I wanted to share my joy with the online world and posted the news everywhere! You are my peeps these days, my tribe during these years of relative isolation.
So there you go: the truth. My “Hope Beyond” must remain in the Lord Jesus Christ and not in my circumstances. He will use this for His glory: the good, the bad, the ugly. My character remains despite my misfortune, despite my weakened and pained frame. And this Sunday I will rejoice with 2 fewer root-canaled teeth the promise we Christians remember at Easter. Christ is risen and He will come again in glory! On this we can be certain. As for my situation, I probably just need more time to heal these fried nerve endings.
It is still a beautiful day outside and my garden is coming back to life. Hang tough, Gentle Reader. In due time, I AM GOING TO BE WELL! Just Julie
Cast your burden on the Lord, and He shall sustain you; He shall never permit the righteous to be moved. Psalm 55:22
But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel. Philippians 1:12
I am 2 days post surgical removal of 2 root-canaled teeth and THE CONVULSIONS ARE GONE!!! Yipppeeee and praise the Lord! This 3 years of daily hell for me and my beloved husband, Steve, is finally over!
While there is still much work to do to detox mercury toxicity and re-evaluate chronic Lyme and mold illnesses, I feel more optimistic that I will be able to tolerate those treatments someday. Until this week, I was failing. I was bedridden most every day with convulsive episodes. The grief and impact was huge on everything from our finances to my aching neck. My husband no longer got a full night of sleep and this illness had changed virtually every activity inside/outside of our home. How would Steve find me when he came home from work? Would he have to make me my pureed dinner and feed me again before bed tonight? Carry me to the toilet? Our hearts were weary after 3 years of this living hell.
Nine months ago I began investigating how two sore molars in the upper left section of my jaw might be impacting my health. Four dentists and three oral surgeons, a cone beam CT, MRI, and pano plus regular x-rays later (including a consultation out of State) we had no objective data to guide us. Everything looked “fine.” The teeth had bothered me for over 13 years! Fifteen years ago I had all my amalgam fillings removed but was never guided to chelate for mercury. Were there silver filings containing mercury remaining underneath the crowns over these two teeth? We will never know the answer to that question. My saliva had started tasting metallic. Eating started triggering the convulsive episodes. With Steve’s support, we took an expensive leap of faith and pursued a dental solution.
Additionally, seven weeks before what would become the big day, I started eating only on the right side of my mouth. Two and one-half weeks later I started a pureed diet to eliminate the chewing action that seemed to make things worse; all this was quite a feat since my struggle to get well led me to eat low oxalate, virtually dairy-free, and completely sugar/sweetener-free, gluten-free, and mold -free foods too! Another two weeks later and 1 week before the surgery I noticed that using plastic utensils delayed the onset of convulsions after eating. Even drinking my foods through a straw helped initially then ultimately triggered episodes. I feared eating anything at all! The only problem with that was hunger and thirst could also trigger convulsions or make them worse. I felt trapped!
Three and one-half days before the dental surgery my doctor recommended trying an EMF deflecting device. “It might help” he said, like so many other recommendations I had received all over the spectrum of traditional and alternative medical care. After one such technology (a Rife machine called a Beam Ray) I tried 3 years ago to treat “Chronic Lyme,” the daily tic attacks started. Within a year these episodes would escalate to waking seizure attacks then convulsive episodes lasting 2 to 5 hours per day. We had tried to shield me from wireless technology in our home in the past yet the results were initially helpful then inconsistent. This time the GEOMACK from Spain reduced the intensity of the convulsions 50%. That reduction gave me a tiny boost of strength that I needed to physically and mentally prepare for surgery. My husband got some much needed sleep as well! Could their be an electrical cause after all? (See this blog for more anatomy and discussion.)
The morning of the surgery went as usual. Convulsive episodes began shortly after opening my eyes and periodically as we prepared to leave the house. Seizure zips ripped through my hungry and thirsty frame as my beloved drove us to the hospital. We were still reeling from the large check we had to carry with us since the oral surgeon insisted on performing the extractions near a crash cart, I guess. And after some prayers, many silly jokes and one last shake/rattle/and roll with placement of the IV in my arm, the time had come to let go and not look back. We reviewed my situation with the anesthesiologist and oral surgeon, surgical tech, and several nurses. They were not to abort the mission if I seized under anesthesia! Just wait a moment and get the job done.
I’d like to say that I woke up in a calm, blissful state but that simply was not the case. I became nauseous and pain management was a problem over the next day and one-half. Oh well. One thing was certain: THERE WERE NO SEIZURES OR CONVULSIONS! The “battery effect” of dissimilar metals in 2 adjacent crowns over root-canaled teeth WERE FRICKIN’ GONE! No more tazoring of my brain would continue. And hey, if there was hidden infection in the root-canaled teeth then the problems caused therein are now also “history.” The hell is over.
My job now includes retraining my brain to relax when falling asleep instead of bracing for impact. My job now includes remembering all of the relaxation techniques I used to train my patients in psychiatric hospitals to deal with anxiety. I need to rework those memory pathways and feelings of impending doom that followed me, waited for me every night, every morning, every time when I was exposed to noxious stimuli, or even on the clothing or breath of my beloved anytime, anywhere. Hey, no problemmo. I am ready to live and the extended forecast is good!
Thank you and big hugs to those of you who have followed my story for any length of time, You have been an important part of my lifeblood to go on when I could not. Sometimes my husband could not be home with me and I was alone, feeling terrified mostly of even greater suffering and it came. The worst episodes were never captured on YouTube videos because my warrior husband was needed to hold me tightly to keep me from greater harm instead of holding onto a camera. Sometimes the Lord was silent even when I cried out to Him when breathless, facing death again and again when my breathing stopped. When He did speak I gained the courage I needed to face the next trial. In the end, death was not my greatest fear. Dying without my Heavenly Husband was.
But you know what? I made it through. Steve made it through. A new chapter in our lives is about to begin. I’m going to take some time now and regroup. I am very weak. An infusion of my Jesus is needed. The warmest embrace with my beloved must follow. And really good food cannot be far behind. After tomorrow the putty d’ jour will be history! Yeah God!
Pureed Organic Tri-Color Carrots & Cauliflower, Bacon, Organic Beef & Potato Chips, Homemade Broth, and Sea Salt in the Recovery Room!
With love, JJ
But the Lord was my support. He also brought me out into a broad place; He delivered me because He delighted in me. Psalm 18:18b-19
Cast your burden on the Lord and He shall sustain you; He shall never permit the righteous to be moved. Psalm 55:22
UPDATE: The holiday from convulsive episodes did not last, unfortunately. There were many benefits from having these two infected teeth removed: significantly less mouth pain, less congestion in the upper shoulder and neck, decreased TMJ symptoms, decreased auditory anomalies, reduced ringing in my ears, and more. Then there was a miracle: our insurance company covered most of the $10,000 bill. Amazing! :J
Jesus is for the Wounded 
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