He knew

Still in shock from the news, with tears coming forth without notice

I grieve the sudden death of my brother and all that it means.

Where do I begin to tell the story of his life and mine intertwined?

I just can’t write very well right now.

One dynamic is clear though.

Just before he died, he had come to know and convey despite horrific suffering

That life in Christ is worthy of our primary focus. It supernaturally transcends the incredible chaos of our time whether it be in our own broken frame or the society at large.

I don’t think he lived this belief out perfectly in all areas of his world. But in conversation with me, his witness was clear: LIFE as in LIFE IN CHRIST is the most important matter of our days.

With this I find it curious that his final words to his companion and caregiver of many years were, “I don’t want to die.” But Mike, to live is Christ, to die is gain (Phil 1:21), ultimately to be with the Lord and perfectly whole. Why did you not give in to death when in a coma, when seizing, when facing searing pain and be truly free? No one would know and no one would blame you for letting go. You didn’t even do so until the Lord called you home. I am seeing in you this gift of perspective that I have not been able to realize in my own time of battling serious illness. You got it right! I need to get it right too.

Thousands of waking seizure attacks have ravaged my body over the past 8 years. The health complications that came along the way have brought much grief, guttural cries out to the Lord for relief. Experiencing my brain on fire when I am still awake has brought traumatization, triggered memories of past incidents of trauma, stirred emotions that took me down, down, down. If there was lingering bitterness from the abuse of my past then it had no where to go to heal when every month it seemed, there was a new medical problem/diagnosis/treatment to consume my days. Sure, I tried to live around the compendium of illness; weather sick or faking wellness, I see now that my focus has been in the wrong place too much of the time. I need more of Jesus Christ and less of everything else NO MATTER WHAT IS GOING ON AROUND OR WITHIN ME.

I have struggled to read my Bible and pursue even passive activities that can strengthen my relationship with my Savior. It’s been really, really hard to do so. Somehow my brother Mike figured it out despite his suffering. He could only use one hand! His body erupted into violent spasms without warning. The simplest of self care tasks were laborious beyond belief. He has been bedridden for most of the past few years. And the pain. I don’t know if anyone really knows how much he endured, how much medication or cigarettes it took to numb the torture of severe contractures from a stroke about 5 years ago then subsequent medical mismanagement (or minimal management). So did he talk about all of this with me? NO! He chose share what he was studying in his Bible instead. He asked me important questions that I was barely able to answer. Mike meditated on the significant issues of life itself. He saw beyond the life his broken frame, not wanting it to end despite his suffering. Mike dwelt for hours each day in the presence of our Lord and blessed me in return by his doing so.

Mike really did not want to die. I get the sense that it was because he wanted to be here when the Lord returned in glory for His church. Mike thought he would be here for the rapture. Sometimes I think that I will be here for the rapture too, and that it might not be far away with the absolute chaos going on in our country. Despite my own faith in Jesus Christ, many times I have wanted to die. I have been overcome with despair, enough so that I could not imagine living another day with my own suffering (described here many times, portrayed on my YouTube channel). My faith has wavered at times when challenged by the worst ravages of chronic illness. I am not proud of it. This is important to share however, as I know that I am not alone. Tis better to bring these issues to the light of day in the right way at the right time. Now is that time. My brother’s witness to me that I finally got to see in his passing from this life is a proverbial fork in the road for where I want my life to go from here. I got this perspective from you Mike. Thank you. You have finished well, the task of ministering to your older sister whether you knew or not that you were doing so.

Thank you my dear brother in Christ. On Friday you told me that you knew that one day you would be healed. That prayer was answered just one day later! I rejoice that you are now leaping like a deer on high places as you dwell with our majestic Savior in the heavenly realms. See you one day when the Lord calls me home too. Until then,

Heyyyyy Mikey! I love you. 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

I didn’t get the message

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?

TO BE CONTINUED . . .

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!