If only I knew

If only I knew back then what my new life would be like, would I have chosen it? Probably not.

The summer of 2007 was a very exciting one for me. I had just met an amazing man of God and had established myself in a beautifully decorated condo in one of the nicest suburbs west of Chicago. I had a great job that paid my bills along with some extra resources that I inherited when my Mother passed away. The grief associated with her death was complicated by navigating the affairs of her estate. Regardless, a new love makes everything nicer, lighter, and bearable even exciting. In due time I would come to understand my Pastor’s advice not to marry in the same year that I lost my Mother to her complicated health issues. Steve and I married at the end of the year anyways and I was off and running in Indiana with my Intended Beloved. God was so good!

Before long I was completely overwhelmed by all of the changes in my life. When I worked in mental health, we used to give our patients a Stress Management Scale to check off how many changes they had experienced in the year prior to hospitalization. Life events were given weighted scores, tabulated, then matched to a scale predicting susceptibility to illness. Yeah, my score was over 300 which is ripe for a stress-related illness. But thankfully, it didn’t happen. The adjustment to a new family life, State, house, church, job, pet, grocery store, bank, yada, yada, and husband was still completely overwhelming. Then I had to leave my new job in Indiana to find another because of ethical issues. Holy cow. It was a lot of changes in a very short period of time!

Then my Dad, who had been estranged from our family for 27 years, contacted my brother in Michigan. Mike was still living in our Mom’s house so my Dad was able to use our old phone number to reach him. Soon I was in touch with my Dad as well, catching up and trying to figure out how to deal with the sordid memories and circumstances of his leave-taking from our lives so long ago. Overall it was a good process. He was kind and generous. He shared stories, many of which I hadn’t remembered. After a few years of slowly getting re-acquainted, it was time to meet in person at his home in Florida. Mike was invited to go separately but never accepted the offer. I did. Steve and I went under an extremely stressful set of circumstances with my job at the time that would later magnify how important that visit to see him would be to my future. It was really good to see my father again.

Less than 2 months later, my Dad passed away. Mike never got to see him. My own visit and especially having shared it with Steve, were instrumental in figuring out how to manage my Dad’s affairs from where we lived in Indiana. We had a dinner with my Dad’s “tribe” of friends along the Forgotten Coast (so telling, eh?) of Eastpoint, Florida instead of a funeral per se. And over the next year, it would take dragging my brother through endless legal procedures to settle our Dad’s estate especially the selling of his truck. Later on with the inheritance that I received, I bought a newer truck like my Dad’s and became a woman who drove a truck — NOT a compact SUV or car like every other woman I knew drove! After all, I now lived in Indiana. Seems like every 3rd person here has a truck for work or various projects where ya gotta haul something from here to there! I liked gardening so it worked better for me than my Hyundai Tuscon. Over the next 4 years I finally had an opportunity to take the class to become a Master Gardener. Perhaps the truck was part of the overall uniform? It sure hauled a lot of soil and mulch, paddling gear and other stuff. How did I ever live without a truck in the suburbs of Chicago? Well gee, back then I lived most of my years in a townhouse then a condo!

My life drastically changed at the end of the same year of 2011. I was barely past the grief and memories stirred with the ordeal of my Dad dying when I contracted a serious illness kayaking in a local reservoir. Perhaps this stressor finally broke me down. Viral hepatitis became the first domino in a cascade of serious health issues that challenged even our brilliant family practice physician. Sure I had some hormonal and orthopedic issues in the past, even chronic pain, but nothing compared to the daily convulsive episodes and myriad of severe symptoms that beat up my body as I practically crawled through 2012. By February, I could no longer work. I felt that I was putting both my occupational therapy patients and myself at risk should I continue. I struggled to concentrate, to function, to sleep, to complete basic activities of daily living. When my Doctor thought I had underlying chronic Lyme disease, the treatments he prescribed felt like they nearly killed me. Then came the first of a series of alternative medicine treatments. It was the Beam Ray Rife machine that triggered the daily tics, the seizure attacks that escalated into the worst hell I could ever imagine. The episodes wouldn’t be diagnosed as epilepsy but they were equally as devastating. It felt like my life as I knew it was over. Actually, it was.

If only I knew that I would become seriously ill just 4 years into my marriage with Steve, would I do it all over again? To me that is a rhetorical question. Who would choose the extreme stress of almost complete social isolation? This included separation from Steve’s wonderful adult children and family who hadn’t had enough time to get to know me from their homes out-of-state or out-of-country, let alone my own friends and family. Who would choose re-injury of chronic pain issues every day and every night when the involuntary, violent convulsive episodes would start about 10:00 pm every night and return upon wakening every morning? At one point I noted over 30 symptoms to my complicated, serious illness that baffled specialists in-state and out-of-state. Over the course of the next decade, over $100,000 of savings and income would be spent trying to find answers. Treatments would diminish the worst symptom but not remove it or the episodes would increase again after a few months of a reduction. It would take almost 9 years to find cranial nerve, especially trigeminal and vagus nerve roles related to a condition diagnosed as Autonomic Dysfunction. We found tools more recently to stop them after a period of time but not prevent them. The grief and frustration were crushing to both of us. Steve had support from his family and friends, work and church. My support circle caved in with each passing year. I made a few new friends online dealing with similar issues. I knew I wasn’t alone because of their friendship and prayers from them and believers who became distanced; the constant companionship of the Holy Spirit kept me alive and going most of all. He alone re-started my breathing hundreds of times . . . I now longer feared death but saw it as a type of relief should it come.

We simply cannot know what lies ahead of us in our little lives. The Bible tells us that man makes his plans but it is the Lord who orders his steps (Proverbs 16:9). The Bible tells us that He has plans for us, to prosper us and not to harm us, to give us a hope and a future (Jeremiah 29:11). The Bible tells us to trust in the Lord and not in our own understanding, that He will make our paths straight (Proverbs 3:5-6). The Bible tells us a story where He restored the years that the locusts had eaten (Joel 2:25). And so much more. When the months rolled into year after year after year of serious illness for me, when the convulsive episodes and tic attacks racked up into the thousands, when people close to me started to doubt their medical origin even when confirmed by tests and experts, when the money ran out for aggressive treatments, when the illness alluded three large research medical centers in the country and several specialists out-of-state . . . I hit terrible periods of despair. Then I planned my suicide in October of 2019. When I realized to follow-through on my plan would be to believe the lies of Satan himself as he smiled in my mind’s eye, I realized that I was being deceived. Death, like divorce, is not an answer but a new problem. Believe God’s word and promises instead. I chose to accept that I am simply too finite as a human being to fully grasp these Bible verses, God’s real plan for my life, what I cannot see, what my life is really about. I chose to follow Jesus.

All I have is here and now with you Gentle Reader. It’s not up to me to end the timeline. It’s not up to me to write the next chapter of the story of Just Julie Writes at Hope Beyond. My hope and future are in the hands of the Lord. I pray that my hands type as unto His grace, His redeeming power to overcome.

It is up to me to choose to enact a faith in an infinite God Who is beyond what I can see. He knows I have seen and endured a lot of horrible things in my life before I ever met Steve. What I could not even imagine before this past decade was what it would be like to go through it all with a man who loved me more deeply than I knew existed in life. He was often my Jesus with skin on. He is loyal and yet human, strong and tender, God-honoring and God-fearing, loving and still driven to pursue his own dreams too; Steve is my provider of all I would need in my earthly husband. I am truly blessed. We did reach a crisis point in our marriage twice during this nearly 10-year journey within our over 13 years together. We got through them and healed the pain of potentially losing each other. More intimacy grew between us as a result, along with trust. The spiritual battle that came along with each test melted away as unto the Lord. Only the Lord knows what those moments were really all about.

Only the Lord knows what all of the changes, the stress, the spiritual battles, the strife in our lives are really about. I’m sure that each of us would freak out if we really knew what the trials in our lives were really about. One day all will be revealed. For now tis better to lay down our swords and pick up His along with His shield of faith. Put on the entire armor of God while we’re at it. This life is not for wimps, I tell you. JJ

Less shock, more bounce

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!

Photo by Gratisography on Pexels.com

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.”

Lamentations 3:18-24

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

Never Give Up

The pattern has repeated itself so many times that I do not know why, in my humanity, that I am still here. There must be a God.

When suffering exceeds the limits of the human frame, or so it seems, then there must be more holding that person together. There must be a God.

Satan will use every and any negative emotion, event, infirmity, mental game, situation, deficit or even excess, pain, memory, experience, high or low to attempt to separate us from our Creator. When he ultimately fails, we know there must be a God.

Our worth has little to do with what others think, do, or say once we come to know Who knew us from our first moment of life. As this transcendence to seeking others to seeking God becomes real, we will understand that God has a personal form.

What that personal God shows us in His mercy and grace, speaks to our hearts in a way we can know and feel, so that we respond in submission and an eternal embrace. The love and acceptance you will find therein comes from Jesus Christ. He becomes not only THE God but YOUR God.

We are stewards of what happens to us just like the stuff that is given to us to use in our lifetimes. And if your journey like mine has included chronic illness, we still have a stewardship responsibility to use what has been allowed in our lives for some greater good. Yes, even the bad stuff. Use it to point others to the hope you have in Christ. What has He done for you? For what are you grateful? How did you overcome the grave marker of despair? How did you come to understand that the Lord is not Santa Claus and that bad things happen to good people in a fallen, imperfect world? And how did you become o.k. with all of that?

So what then about the meme above? What if others judge you anyways no matter your “testimony,” mock you, and really don’t care about what message you have to convey? You have to live your life anyways in concert with the tri-une God who will never leave you or forsake you. What He thinks is what matters most! His Holy Spirit will guide you along the way, take your prayers to the Father and let Him help you to know that Jesus Christ is real and really God. Oh and especially reassuring is that He will make all things right one day, maybe soon.

I write these thoughts as I sense gradual breakthrough coming in my battle over a horrific illness these past 8 years. Improvements are lasting more than a day. Treatments are starting to work and I can do some things that I enjoy at least one day per week. Sleeping is more restful for at least one, 4-hour segment with at least one of these during the nighttime where it belongs. The convulsive episodes are more consistently less intense, shorter, and sparing of at least one day per week. I am somewhat less reactive to more types of noxious sensory stimuli. Progress is not perfection but I gotta shout out that this time for me there are clear improvements in my life as a whole.

I knew a young bride some years ago as her wedding got closer, who faced the frequent harassment of an overbearing mother-in-law. Her own mother taught her a simple technique of taking the verbal assault as if they were splashes of water. The young lady learned to let those splashes of water run off of her like water on a ducks back, exclaiming in her thoughts, “QUACK! QUACK!” The little internal laugh of such a silly technique has actually helped me shed the critical remarks of others many, many times. With the COVID-19 pandemic, I have had several folks claim my conservative views were due to my health problems. No one cares about my Master’s degree nor extensive work experience in the health care field. I get shot down as one of those with a “compromised immune system,” probably o.k. to let go, to get sick, to die. Seriously! Or I am not someone whose opinion counts about anything important because I am not important. And that is a LIE. QUACK! QUACK!

Just don’t give up Gentle Reader, k? No matter what gets thrown at you or thrown against the walls around you, keep going. Lean on the Lord as the person of Jesus Christ to provide supernatural strength and wisdom. Dig into His Word if only for one verse at a time. Cling to it like a lifeline! These are crazy times indeed. Regardless the God of the universe has overcome it all!

Belief in the Lord Jesus Christ may just change more than your own life. JJ

1 John 5:4

For whatever is born of God overcomes the world; and this is the victory that has overcome the world—our faith.

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

Start at the point of exasperation

When you reach the end of your rope then a new one must come forth

‘Cause everyone needs a hand to hold onto sometimes.

When all you can see is a dark web of experience, a broken road underfoot

Then we must cling to a crossbar strong enough to last forever.

When your body is broken, unreliable, and shaking with ravages of illness

There is no reason not to grab a hold of something eternal, transcendent, permanent, sublime.

When the pain begins as your eyes open and close each day, each night

Trust that these are a consequence of our fallen world, not your curse tender child.

When hopes get dashed over and over and over and over again

Re-examine what you are hoping for . . . the journey is alas, laced with gold.

When “challenges” plague you that would dwarf the average soul next door

Walk your own path with eyes fixed on your Maker Who is holding your heart.

When all hope is gone it is actually the perfect time Gentle Reader

To cling to our risen Christ, borne from an old rugged Cross, waiting in earnest to love you through it all.

When one day the suffering ends and your exasperation is but ashes on the dirty ground

Know that to finish well, not pretty or neat, is its own just reward. We’ve got this. He’s got us. And all will be made well.

Isaiah, 41:13, Lord holding us, take heart, trials, illness, disease, suffering, tragedy, Christian, Jesus, hope, enduring, reward