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

Another Direction Has Begun

In this series of 1, 2, 3, and now this 4th blog, I share the pain and agony, arduous process of desperately trying to find hope through yet another medical crossroad. The discovery then extraction of an infected tooth was akin to placing an entire 8 years of battling a serious illness into a 2-month window of broken shards of glass. The infection was discovered on March 16th and the first surgery consult on April 11th. The second surgery consult resulted in the surgical procedure on the same day of April 22nd. Two treatments with IV ozone BEFORE the extraction showed promise to end my worst symptom of convulsive episodes however the gains lasted 3 and 2 days, respectively. Then there were horrible complications after the tooth was extracted. The 3rd treatment with IV ozone yielded 4 days of reprieve and a considerable reduction in pain and inflammation of the gum tissue below tooth #19. We are now optimistic for what the 4th treatment will bring later today. I have had more better days in a row after the 4th infusion than in the past, well, very very long time!

It really looks promising that another direction towards healing has begun. It really looks like the extraction of two other infected teeth in 2015 then the craniomandibular treatments in 2018 are related to the current dental issues: they all relate to the innervation and bio-mechanics of the trigeminal nerve complex, particularly on the left side of my face. I suspect that there may be a vestibulochoclear component as well since certain noxious sounds can trigger a neurological event. Infection leads to inflammation; suboccipital constriction from the trauma of repeated seizure attacks clamps down on those inflamed nerves. Ongoing inflammation of the cranial nerves, including the vagus nerve, keeps me on edge and from getting well. The visit in Indianapolis tomorrow will include an osteopathic evaluation and treatment in addition to 10-pass IV ozone. Tis time for my entire cranio-sacral rhythm-and-function to calm the heck down, get straight, and fly right!

Did I tell you about the garden bed we were able to put together this past weekend? My body hurt like heck yet my spirits were lifted as I pursued one of my life’s passions: all things gardening. How poetic for me to be planting a new garden bed in the spring of this year, just when my body appears to be springing to new life? God is so good, Gentle Reader. He does sprinkle His goodness here and there even on our worst of days. And this past week we had a down-pouring of it, literally! The day after Steve and I pushed to get all of our veggie beds ready for planting, the heavens opened up with a day of soaking rainstorms. Like washing everything clean. Like nourishing the dirt for the newness of life to follow. Like paving the way to bloom where one is planted . . .

I’m good with all of that for sure. JJ

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 . . .

The next day

Getting as much done in a day as I can on good days has been my mantra of late. Make shopping lists organized by store. Prioritize errands and organize them by regions of the moderately-sized city in which we live for best travel efficiency. Put Amazon items on my Wish List for bulk orders about twice per month. Put appointments, key things to do/questions to ask at respective appointments, and errands on the calendar app in my phone so I will always have it with me. Record “to do” items on the calendar as well then just move them to another day when sickness takes over and everything needs to change. Make sure to record the places that I went, dates/duration of major convulsive episodes, start/stopping of new treatments, and aberrations in sleep habits to track this serious illness for trending. Use the note function in the glucose meter when compelled to take blood sugar levels. And stage lists, paperwork/medical orders, supplies, lunch bag, water, etc. by the front door so I don’t forget anything when I can finally get myself out the door. Works for me!

It’s no wonder that I am exhausted after a day with a few appointments and errands completed in this way. Marked fatigue with a difficulty functioning follows even if the first appointment isn’t until after 1:00 pm in the afternoon! Still I would really rather block off parts of days and push through, even if it means sitting in a parking lot somewhere resting between destinations for up to an hour, than to have 1 or 2 commitments every single day of the week. I sit a lot in my truck between destinations: eating a snack, sipping some water, checking my lists or phone calendar, and getting my head together (i.e. if the environment I had just left was ridden with noxious environmental stimuli that is still difficult for my brain to process). All of this completed with some safety measures in place of course.

I figure that I can always rest the next day . . . or the next morning at least. Scheduling my days this way is a form of chronic illness survival, especially when you have to come home, change clothes, shower, and clean everything purchased after every trip. (We still must practice a fair level of extreme avoidance due to my ongoing sensitivities.) Perhaps if I were my own occupational therapist, I might advise a better strategy of energy conservation and pacing. Oh dear, another example of the therapist not following her own advice!

All bets are off as they say, the next day, if there is a major convulsive episode the night beforehand. Appointments get cancelled and re-scheduled. To Do List items get moved to another day. A call is made when I can function, to my hubby-dear to pick up critical items when needed. And if the difficulties last for a few days then I am grateful to be able to use our local grocery store’s shopping and/or delivery services. Sometimes supplements and compounded medications can be sent over in the mail. These are wonderful services that really help on days when I am more home-bound: as recent as 2 weeks ago.

Things are really hard when medical appointments fall two days in a row; these meetings are always stressful for me anyways. Things are equally as hard when illness factors worsen around special occasions and holidays: when things simply cannot be rescheduled. This happened today after a wretched convulsive episode last night. I had planned on preparing a meal and some treats for family members who were visiting and it was all I could do to pray my way through the completion of the project. Gratefully my beloved husband was willing to prepare part of it, but sadly after I awkwardly blurted some speech that was a little too pressured, a little too much reflecting the exhaustion I had not yet yielded to the strength of my Lord’s. I had to apologize. Eventually, I got outside in the milder Winter weather of late and for the first time in the three days that I had hoped to do the same. The Pup and I came home then I finished my tasks (’cause there’s always another thing or two to do before you can sit on the couch for a couple of hours and REST!!!).

Probably a few hours too late to be as effective, I did rest. Even the editing volunteer work on the computer got done. And a whole lot of food got consumed while watching cooking shows on Public Television. (We don’t have cable TV.) Such is life in survival mode I guess. The balancing act begins again tomorrow with a family Christmas gathering at a local cafe. It all reminds me of the Capitol One Bank commercial here in the States where the viking character asks his slain comrade or opponent, “what’s in your wallet?” I always hope that it will be fuller on my next day . . . Tomorrow we shall see! JJ

What’s in Your Wallet?