Signs of spring abound juxtaposing the promise of new life with the reality of death in this season of both green and black, this season of life altered by a rogue virus. How can we possibly take it all in?
The goodness that we can find in our shared humanity isn’t far off as neighbors serenade the streets with music. We put teddy bears in the front windows of our homes for the kids passing by at a safe distance or join masses of cars flashing emergency lights to support the healthcare workers laboring inside our local medical centers at night. Each gesture brings a smile, some warmth for a brief moment in time.
Conversely it seems that the fear of a silent killer has intensified the divisiveness, the viciousness in social and public media to levels not seen since caveman days. Our society has gone beyond simple disagreement to sarcasm and its true definition: to “tear flesh.” Hatred, really. It doesn’t matter to the masses that we are all in this together, that we are all at war against the same enemy. The process of dealing with COVID-19 will reveal the good and bad in each of us at some point. The stress is crushing in the weakness of our humanity. If you looked more closely I believe you could say that below the surface, we are all hurting from the loss of life as we once knew it.
I’ll never forget the 2 women joking about the newly coined term of “social distancing” in front of the organic produce section of our local grocery store as we waited our turns to step up and select a vegetable or two. That was only a month ago. Yesterday no one was joking in their combination of bare hands or gloves and masks, grasping a sanitized shopping cart, and standing 6 feet apart on the blue stickers marking the floor at the checkout line. The air was tense as I observed the cashier wearing only one latex-free glove, the gal bagging our wearing a re-usable cloth mask and no gloves, then me taking off one of my sweaty gloves to sign the screen of the credit card reader (before sanitizing that hand with a little bottle of same in our truck). This is nuts!
I submit to you that overall the COVID-19 Pandemic is not bringing out the best in people yet. I am glad and grateful to see the goodness here and there. I do believe that most of us in our hearts are somewhere between survival mode and beast mode. We are struggling in our own strength to establish some sort of normal routine while living in the chaos. That is simply not possible yet. How can we do so when in the back of our minds we are wondering if we or our loved ones will be the star of that leaked YouTube video of the patient dying alone in an ICU bed or worse, packed in a black bag in the refrigerated truck parked outside the freight entrance of the hospital? Yes, this is way beyond nuts!
Experts tell us that the world here in the United States will get worse before it gets better. But probably in each of our own private spaces and places, there will be some nice things that will happen. Some loving and meaningful moments will be in the mix. But we must ask ourselves if that is enough? Is it enough to just survive the pandemic of year 2020 with a few GIFs and memes from Facebook in our minds? Or conversely do we throw up our hands, succumb to addiction (including stuffing ourselves with food) and say if we die, we die? I mean really, how does one cope when the world is going increasingly mad?
You go deeper Gentle Reader. You go deeper than asking how or why or when or where or who or what. You go deeper than the comfort of your own bed (if your are blessed to have one) and kitchen full of food (if you are blessed to have one). You ask yourself what life will be like 2 months from now when your housemates can’t stand each other anymore or your employer had to close its business after all, when the government goes bankrupt or the earth groans with the tragedy that actually didn’t take us all out. You ask yourself about the value of your own life and the ones you love and further, the very meaning of life itself.
I pray that it is sooner than later Gentle Reader, that you will go beyond the darkness of days to go deeper still. For it is then that we both will know without any doubt that we were never alone in all of this mess. There is a purpose and a plan. We will find a peace that transcends the mess of this world. This is not of ourselves such that no man may boast. We simply are not strong enough. All along the way the God of the universe is watching, waiting, listening, grieving, loving, and ready to see us through no matter what happens. It is for His design and glory that we live. Say what? How can I say this? I found the answers, the truth in His Word. I found that the Lord ordained supreme testing within a horrific illness I endured and battled over the past 8 years. And through it all, there was meaning and purpose. I was never alone. He was always there with me whether I felt His presence or not. And always there was peace beyond the strife. I escaped death more times than the 9 lives of Morris the cat; COVID-19 doesn’t change a thing whether I live or die. My eternal life that transcends the strife of this world began a long time ago.
The world simply will not, no never satisfy the groaning, the longing of our hearts. That place is for Jesus Christ alone. Want to explore this topic further? Go right now to the book of John. Find a Bible. And dwell amongst the pillars of the King who loves you so! Do it now before it is too late. JJ
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
Ever wonder what the outcome might have been if we had been just a moment earlier or perhaps later at a given moment in time? When you just missed the ice cream truck as a kid or perhaps as an adult, a former lover narrowly escapes your intrusion on his moment of indiscretion? What about that moment of sickness that you managed to hide from the critical eye of a relative or that time you arrived at the grocery store only to find one box of your favorite cereal left on the shelf instead of two? Perhaps I didn’t get the message or the Divine nudge . . . or maybe I just ignored it and I am the better for it in the end. Such my rationalization goes.
Then there’s the time when the message never seems to come at all. You get the first part of some saucy news but never the rest of the story and you are left hanging in disbelief, doubt, dread, or worse. Is my severely disabled brother going to be o.k. or not? Will someone paleeeeese return my phone calls? When will I find out the results of a biopsy procedure for crying out loud? I want answers NOW!!! Perhaps the Lord ordains that a little more time is needed so I simply have to slog out the wait. Such is one of the hardest tasks in a life still structured by time, not yet unstructured by eternity. As believers in Jesus Christ, we’re still here in our constraints of time and space. The waiting we must do is necessary yet really hard sometimes.
The weeks when prayers seem to go unanswered, no direction comes after hours spent pleading on our knees, events come forth in puzzling sequences that confound the issues at hand, you never really figure out what the heck was going on or the purpose of it all in the end. Such are the mysteries of living a life in the slow lane and especially of a person battling chronic illness day after day after day. It’s really hard to believe that what you see is all that you might get out of your broken life. Alas we always hope for something more than we have don’t we?
I just didn’t get the message that there would come a point at which things would not get better for me. Blessings abound around me but my health has not improved; it has deteriorated. Every few months has brought serious new problems that threaten to choke the life out of me. My wiggle room has gotten smaller. Forget rebounding to a prior level of functioning. It just isn’t happening for me right now. So yes, I am really down in the dumps tonight. I have been up all night for the second night in a row with a daytime of sleeping to follow. The unseasonably warm and sunny day out there in the Midwest will be enjoyed by folks other than myself as the tic attacks wreak havoc on my sleep/wake cycles once again. Wasn’t I getting better a year ago around this time? Didn’t I have the best spring last year of the prior 8 years? What has happened?
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!
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!
While it may be time for celebrating a Christmas holiday, preparing for the new year about to begin, or maybe completing something else on the “to do” list, one thing is for sure: it’s not my time to go yet. But what does it all mean?
Sunday was a particularly difficult day. Taking a particular anti-viral medication in the wake of a return of shingles left me with few options other than continuing it for awhile longer than in the past. I had just sent a message to my Doctor via the patient portal at our local health system asking if he would he extend the prescription? He agreed. But what was I thinking anyways?
Considering it a good idea to add a a supplement that fights viral infections, two days prior I had added a low dose of one about 2 hours after the dose of the prescription medication. That was a BIG MISTAKE. Within the hour I would begin what would become a day and one-half in bed with on-and-off convulsive episodes. Holy cow! Here we go again! Was it die-off? Overdose? Redistribution of toxins from another source other than that which I had intended to target? Who knows?! The result was disastrous. Too bad that the weather was very mild and sunny for a December day; my hopes to get outside and take the pup for a walk were trashed. Hubby went for his 20-mile cycling ride. I had to stay in bed, taking 2-3 hour naps after any activity such as making a meal. Another weekend was LOST to factors of illness.
Perhaps it is exhausting to be battling FOUR infections at the same time? Indeed it is. Yet that is exactly where I find myself: 3 strains of herpes infection (zoster plus the reactivation of EBV and HHV-6) in addition to a MARCoNS sinus infection. Treatment for the latter has included a complexity of rotating nasal sprays and rinses. I was nine days into the treatment of shingles with famcyclovir TID. Yes, shingles had flared up for the third time in as many years, this time with severely itching and burning lesions on my upper back. Increased fatigue was profound. As the days wore on, the convulsive episodes appeared to be coming down again as well as reactivity to sensory stimuli. It seemed like progress. However, this trending did not last beyond that extra dose of an antiviral supplement called Lauricidin.
Evening came and my saint-of-a-husband had already helped me with a couple of rescue remedies in the afternoon. He lain beside me as another episode ramped up, this one more aggressive with guttural utterances that were as frightful as they were embarrassing. Seizure spikes and vocalizations emerge much like vomiting does during the flu. It just comes out of you and there is nothing that you can do about it. One arm shakes repetitively so fast that you think you will either sprain something or fling a hand right off the rest of the extremity into the air . . . then a leg on the opposite side repeats the pattern about 9 inches up off of the bed! Try to cover up to stay warm and just the initiation of movement exacerbates the intensity of the convulsions, sending my body further out of my control. I gasp for air then pant vociferously lest I pass out for a lack of oxygen. Then the pattern cycles again with new, involuntary movements that send my head and neck into spasm, along with great pain. I could not even grab my neck this time to protect myself from further injury. A headache follows every time.
Tears pushed out from my face with weeping when I could breathe more than a couple times in a row. Somehow I blurt out to Steve to please pray. These episodes have appeared demonic more than one time in the past and I sensed that could be the case on Sunday night as well. It was just too frightful to be a simple seizure. Precious Lord, why do I have to be awake and witness this hell, burning it into my memory then try to function sometime later as if everything is alright again with the world when it certainly is not? It’s like an abusive trauma that repeats over and over again so that your spirit never can heal, always remembering, always fearing its return. I may never know the answer to questions that I have asked, researched, prayed over with THOUSANDS of convulsive episodes over 8 years of chronic illness. And grievously, dozens of the episodes have been really dark ones like this one. But only 2 have been true near-death experiences.
My breathing got shallower yet I was not gasping for air anymore. The room was already dark from Steve turning out the light for me to decrease sensory stimuli; my vision was dimming further as I felt my very life closing in on me, my left eye pulling shut on its own. I started to feel as if I was leaving my body and wondered if I would pass out before my breathing would stop altogether? Is this how it works when people die in their sleep? Or does their heart stop beating before they gasp one last time for air? Do they know what is happening and does it terrify them when they cannot stop the train wreck from reaching its fatal impact? Why did I seem so far away in my mind’s eye yet still feel the painful stiffness of my weary frame shoved into the foam topper on the bed?
Somehow I became aware of my beloved lying behind me and blurted out my final goodbye, “I love you Steve.” He replied, “I love you Julie.” It’s all I could say. Then I saw him in front of me. Well not really but in my mind’s eye, I saw the archangel Michael coming for me. He told me to follow him and drew me away from the present tense towards another dimension of space and time. “Follow me,” he repeated. I saw no white lights as the scene was actually rather dim making it difficult to see anything else but the back of his right side as he turned to lead me away somewhere. I didn’t ask where, I just “went.” Then I became aware of another figure. This one did not show me His features but I knew Who it was. It was Jesus. He looked at me for awhile with tenderness yet directness all the same. Time did not stop or move forward . . . it simply was not there. It appeared that some sort of evaluation was going on or maybe it was some sort of test. I had no thoughts. I just waited there before His presence.
Then my Lord spoke. “It’s not time yet.” I wondered in my spirit what He was talking about? I couldn’t process the words. I actually do not recall breathing just then. By this point, Steve had reached his arm around my waist to check if I was still breathing. He would tell me later that he was wondering in this moment if I was going away for good? The seizing had stopped. I had become unusually quiet. And I had stated the phrase that many people say before they take leave from this life: to express their love for the ones in life they hold so dear. I do recall hearing him sniffling. At some point, he got up to blow his nose. I was becoming aware of my surroundings although still engrossed in the encounters I was having: quiet in my spirit, listening submissively, starting to realize how similar the present reality really is to that of an eternal one. THEY ARE ONE AND THE SAME. I had felt myself “leaving” but never felt separate from my body per se. What was happening to me?
Michael led me backwards, fully back into my fragile frame and the place of brokenness where I have spent tens of thousands of hours, there on our bed. I wept deeply. Bitterly. Tenderly. To the point of emptiness. I took inventory of my self, my situation. Where am I now? Let’s see, I am still lying here and yes, still breathing. Steve is still here with me and the room is still dark. I am not convulsing anymore. I am finally warm. My body feels war-torn with pain throbbing from every joint, burning flaring in the tips of my toes and fingers. (That burning is an indication to me that these episodes are a medical crisis yet to be solved as it has a name: peripheral neuropathy. It gets worse during and after episodes.) My mind was too empty, too traumatized or maybe in shock of what I had experienced to say anything aloud. I just had to dwell there with my beloved for many moments before I could re-orient myself to life again. I wasn’t 100% sure that I was back in the world yet.
Finally I asked Steve, “Am I still here?” “Yes,” he said quietly. He would later say how grieved he would be if he had lost me that night. His eyes reddened and we both cried on the inside, me crying all over my face as well. Eventually I asked him if he wanted to know about what I had experienced and he did. He believed my story. Something had stirred in his spirit as well. I believe that is why he reached out to check if I was still breathing. We didn’t and don’t really now how these things work, the Biblical perspective on near-death experiences, nor what it all meant for our lives together. Does this mean that I am cured now of the seizures? Did it mean that I would now be free from demonic oppression? Did I really have an encounter with my Lord and Savior, Jesus Christ, or was it some cruel trick by Satan and his minions? If it was a test ordained by God, did I pass?
I crashed into a deep sleep for a couple of hours, even though I had slept or napped most of that day. I woke up in the middle of the night ravenously hungry with gunk in my nose, forcing me to get up to do a nasal treatment and make some food. By the time I was done with all of that, I was wide awake and it would take hours for me to get back to sleep. Too soon I would need to be awake for a medical appointment, some errands, and a visit with the first of Steve’s family now in town for the holidays. How in the world would I do all of that on THREE HOURS OF SLEEP, an ENTIRE WEEKEND OF SEIZURES plus a NEAR-DEATH EXPERIENCE? By the grace of God, of course. And so I did. I made us a fabulous breakfast and did everything I needed to do, albeit loopy and somewhat forgetful in a health food store later that afternoon. It was over 18 hours before I could get back to bed again . . .
I have come to see that time and eternity might not be that different from one another. We measure time with our watches but our Lord measures our hearts within the experiences He ordains for His purposes. I need to reflect and study all of this some more. How I managed to get my errands done plus a short-and-sweet visit with Steve’s family is beyond me, perhaps supernatural. The day after was a mixture of sleep and a return to sickness with a terrible seizure spike right before I was hoping to go to a Christmas Eve church service with Steve and his family. It didn’t happen. Dang. Very sad. One thing has became very clear though: I am done with famcyclovir! My time on that medication is NOW OVER.
The rest lies at the foot of the cross with my Jesus. After all it is Christmas: when we celebrate His victory over death with the miracle of His birth. Maybe there will be a miracle for me too? JJ