I’ve been up late several nights in a row now, updating my eBook whilst blogging on home safety for my new company: Two Step Solutions LLC. While that may appear wildly productive the timing is just too odd for it to actually be that way for me. I am discovering a few unusual things as I examine this new work, this current blog that you are reading, and the tragedy of illness resistant to treatment.
First, my professional writing lacks clear focus. I add too many words and the flow is not there. Oh the subject matter gets covered yet it is not yet up to par. The short articles I am putting out there are intended to build credibility in my profession and an audience for the time when I want to launch my home safety product. Perhaps I need a check-n-balance system before publishing each piece? Yes, something like that.
I am so very dry with ideas to write about that aren’t a re-hash of the saga, the illness. Sure, I have tried to end each blog with something reflective, insightful, Biblical, creative, humorous or otherwise useful. It is simply getting harder to do so when the head-banging that accompanies convulsive episodes goes on FOR HOURS EVERY DAY! You have heard about all of the test results pending. I continuously try new treatments that make sense to me. The outcomes continue to be disastrous. Sure there is hope on the horizon. But for now it is AWOL!
And if a test showed a particular course of treatment that worked, one could be encouraged as he or she ingested/applied/bathed/drank/swallowed it. As for me, hundreds of remedies, diets, treatments, scans, procedures, therapies, adjustments later . . . I am discouraged. Tens of thousands of dollars later . . . I am discouraged. Moving about while beat up on 3 hours of sleep is virtually impossible yet I was called to do it today anyways. My will has tanked. Yes, I am broken and discouraged.
Lost in space. There is no real sense of time here. It comes and it goes with little of meaning to measure it by. The foam in our bed is permanently dented in both places from my dwelling there. Steve and I pray. I cry a lot. I hear that others pray out there somewhere and yet do not contact me anymore. I am invisible for the most part. And that’s just how it goes when you have dropped out of life for a few years. Even blue jeans from Walmart start looking good when I can finally get out of the house on Wednesdays. Eeeek! I am an Eddie Bauer gal dontcha know?
I probably should not publish this. Well stay tuned. I am bound to bump into some kind of life eventually, eh? JJ
As anyone who likes to (or needs to) cook knows, it can be a tough balance to make a recipe taste just right. The host of your fav cable cooking show says to add a pinch of salt and pepper as you watch her grab easily a fistful of seasonings. Ah ha! So that is why version mine comes out differently than yours! Just ditch the online recipe on her website and fly by the seat of your pants! Taste, taste, taste and make the dish all your own, eh?
I don’t tend to make meals using recipes anyways. With a limited diet and having to make a wacky version for me and a “normal” one for my beloved, I would become too frustrated trying to follow the masterpiece designed by someone else’s reality! I just start with what I CAN eat, add more salt with my eyes closed then put one of my go-to seasoning mixes on Steve’s version. It works for us. Well most of the time, that is! And when it doesn’t, that is what salsa is for right? (O.k. I know I have offended someone out there now!)
My health situation of late is kinda like the same delicate balance. Add too much zinc for too many days in a row or take a new supplement or med for more than 3 doses and whammo (!) I get burned at the “steak.” There’s little more than dog food left of me afterwards. Gratefully my Doc does exhaustive lab testing to try to coach me in the right direction. But now even labs cannot predict the outcome anymore. I seem to react to everything. It’s worse when the pharmacist of an independent lab starts making suggestions too. So I try this and that. Oh how I want things to work out well! So far, it has not.
I am my own worst enemy in these scenarios. The results aren’t even back yet for the female hormones that are at a mystery level since going through menopause. I went through menopause during the almost 4 years of this illness and these tests for me are way out of date. The significance of the hormones is that a goodly number of women (who have true epilepsy) have worsened seizures during menopause and others have reported a new onset of what is called “catamenial epilepsy.” While I do not think that I have epilepsy per se and all the fancy labs have supported this, I do find this course of study intriguing. I joined a couple of Facebook groups on the subject and have hunkered down into some new online research. Then of course I re-started a tiny bit of progesterone on my own to see what would happen. Yeah, I know that I should wait until the lab results are back in a total of 6 weeks. But heck, at the rate I have been going, 6 weeks means up to 210 more hours of convulsive episodes! Why wait? I am going to go through hell anyways . . . .
Dr. Erwin Leutzer of Moody Bible Institute teaches that, “when you are going through hell . . . DON’T STOP!!!” Oh yeah. That fits for me. Not sure what to do with some of the symptoms that are emerging though. Clearly this will need professional tweaking at some point! Do ya blame me for trying? What if I finally stumble upon the resolution to this nightmare? There are so many labs that are off now and the convulsive episodes have escalated to 4 hours or more most days, I just figured that it’s worth a shot . . . worth disrupting the status quo.
The decisions of life can be a delicate balance over here sometimes. Do we continue with travel plans when I am in the throes of chronic illness? For us, the answer is yes. We just adapt things a bit and get on down the road. Life goes on. In due time, if it is the Lord’s will, I am going to be well. In the meantime we will use the portable heater in the Tin Can Ranch (aka travel trailer) instead of the noxious propane mini-furnace so I can be with my beloved overnight at his kayaking competitions out of town. In the meantime I’ll freeze portions of meals to ease food prep when Steve needs to pitch in for me. In the meantime I will fold laundry when my brain stabilizes in the wee hours of the morning and scratch the ears of our pup who gets more fractionated sleep than I do. In the meantime Steve will head into work later to make up lost time and we will be grateful for his flexible employment. And so it goes, a balancing act on steroids that we have come to master, one ingredient at a time!
Gentle Reader, I’ll bet you understand the need for balance with the stuff of life. Let’s look together with gratitude that we do have some choices even in the worst of situations. For those who believe in the Lord, Jesus Christ, we know that all things, delicate and less so, will work together for those who love the Lord and are called according to His purpose. It’s His promise from His word in Romans 8:28. That is because He knows us and loved us before we were even born. He knows and cares for all of the details of our lives! (Psalm 139) And He knows what choices we will make. As for me, I will aim to make choices that keep me moving forward, aiming to win. Sometimes things will be out of balance for a time. Yet with my eyes fixed on Christ, leaning on His Word and the leading of the Holy Spirit I will run my race of life with endurance: endurance the produces hope (Romans 5:4) and endurance to finish well too! (Hebrews 12:1)
My River Bear leading in a United States Canoe Association event last year. Gooooo Steeeeve!
Never sacrifice sweet victory for a need to stay comfortably in balance though. Attend to the tasks at hand with wisdom then get out there and LIVE! Do not stop! May we both finish well my fellow sojourner. The crown of glory awaits!
Sometimes the person out front is the leader of the pack, charting a course for others to follow.
Other times, the one in back of you controls the rudder of your life and you have no other choice than to give into his lead.
The paddler beyond the stern of your boat may be drafting off your lead, riding your wake, resting to overtake the lead at any moment thus determining your fate.
But when matched up together in the same tandem kayak or outrigger canoe, it’s tough to see who is really steering the craft. Is it the gal in front? The guy in the back? The force of the wind shifting them about? The unseen forces of nature?
I submit to you that on the water, the average bloke cannot really tell what is going on unless you know a bit about the sport of paddling, the features of the watercraft, the paddlers therein, and the goal of the voyage.
Here we have dual controls on our tandem outrigger (OC-2), controlled by the pair of foot pedals in either the cockpit of the front or the back of the hull. We decided a long time ago that Steve would be situated in the back of the boat and control the rudder to steer us from there. My role would be to alert him to hidden rocks or logs and only change the arrangement in the event of an imminent crash! Even if he took a different line down a river or around a lake than I would, it would be his responsibility to guide the boat. And so it was for our first outing in the OC-2 since last year . . .
Blue Lake is one of the cleaner yet smaller lakes in Northeastern Indiana: about the same distance from our home as the 3 rivers that intersect downtown and south of us. It’s about a mile long and a few miles to paddle around, inside the shoreline. We decided that this would be the best place to go for a brief outing on Saturday. The water was cool, the air was warm, and the sun was setting a fiery glow in the distance. Fireworks spouted off all around us with smoke from these and summer cookouts that characterize the celebration of Independence Day in America. The haze reminded us of the battles fought for the freedom of our nation in 1776! This time the declaration on shore included everything cooked on the BBQ; the boaters under power and paddle on the water were friendly too. Even the dad of the family that lived across the street from the boat launch who has befriended my hubby during prior outings, stopped by to say “hello.” The best of our freedoms was all around us. No one cared who was out front, in control, or taking charge of anything. Everyone seemed out to have some good summer fun and that was all, including us!
I really enjoyed our 60 minutes canoeing yesterday. Both Steve and I prayed in thanksgiving for the chance we had to be together sharing an activity that has characterized much of our marriage these past 7 1/2 years. I joke that every summer I become a “kayaking widow” as Steve practices then races his surf ski in the northern Indiana circuit of the United States Canoe Association competitions. But I didn’t use to be so alone. Until the Fall of 2011, I usually went out with him in my own kayak and the Fort Wayne kayaking group on Tuesday nights. On the weekends I loved cheering for Steve from the side of the river for as many Saturday events as I could get out myself out of bed in wee hours of the morning to attend. He has continued to race all of our married life together, and race well. I wouldn’t have it any other way. And yesterday we were together again; last month I got to attend one of his races. Lord willing both will happen again next weekend at a new event-with-festival. Lord willing indeed.
The price to pay for participating in these events is very high. I go to them when there is a break in the convulsive episodes and usually pay my dues with bed rest and intermittent episodes the following day. This has been my routine for over 3 years. This past weekend was no different. And yet we still praised the Lord. Jesus Christ was the One who once walked on water, carried the apostles to safety in raging seas from shore to shore, preached from the beach to the multitudes, and created the beauty we all enjoy. He also led the two of us to a wonderful moment of recreation: just me and my beloved River Bear. I am grateful for this gift. Period.
I am also grateful for the man the Lord has designed in Steve. My Stevers waited all day long until I could leave the house after 6:00 p.m. to pack up the boat on the car racks and load up all of our supplies. He had cleaned his car for me earlier, “just in case” I would be able to make it. He changed up his usual workout once we were on the water to make the day meaningful for both of us. And he led us through the entire experience as if the day was just like any other: a warm summer afternoon on the water together in July. Oh how I love you my River Bear! I really don’t mind letting you steer us from behind. It really doesn’t matter who is in the lead all as long as we can be together again like this.
Place me like a seal over your heart, like a seal on your arm; for love is as strong as death, its jealousy unyielding as the grave. It burns like blazing fire, like a mighty flame. 7 Many waters cannot quench love; rivers cannot sweep it away. If one were to give all the wealth of one’s house for love, it would be utterly scorned. [Song of Songs 8:6-7]
So whether you are waiting for inspiration, the man in your life to make a decision, the Lord to whisper His voice into your darkness, or for the rushing waves of illness to calm down in your tender vessel: take heart. The one, the One who leads will take you through the right waters at just the right time in just the right way to get you exactly where you know you really want to be anyways. I don’t know if there will be fireworks to celebrate that moment in time like there was for me? I do know that there will be a celebration in heaven for the faithful who have waited upon the Lord who loves you more than you know.
And He will bring you to that special place, Gentle Reader, where the sailing will be Divine. Just look at how cool it can be! JJ
It’s easy to bemoan the slide of morality in the United States recently escalated by the legalization of gay marriage. What is natural to the human body has now been publicly adulterated by the unnatural. The institution of marriage, which was created by God, has been changed by a few willful and unlawful men who did not even create the institution of marriage. Alas another door has opened in our lives that will ultimately hurt everyone when his or her rainbow-colored eyes finally open to see it. But most of us will never see the damage coming until it is too late . . .
When the truth, the pain of what we have done to ourselves is revealed, we will mourn. Others will mourn the horror of what our complacency, our tolerance has produced. Further, things will go horribly wrong even for those who believe that free living is right: things that they could only imagine in a sex-slave murder mystery will come into their reality and hurt them too. And those of us who have attempted to shine a light or sound an alarm on the moral decline will realize that what we have tried to do could never be enough to change unbridled evil. Eventually, we all will grieve but for very different reasons.
So who will carry all of our tears? Who will carry your grief and mine? “Who” indeed.
Chad Ryan | The Journal Gazette Five-year old Braxton Davis joined the work crew 6.27.15 at Opechee Way and Nokomis Road, using his toy wheel barrow to remove leaves after a large tree fell in the front yard of his house at the Indian Village intersection.
The cute picture above denotes how we have trivialized the important issues of our day. The picture above denotes how we have traded our core values and beliefs for a picture of life that feels good in the moment. We have minimized the significance, the impact that our actions, our public statements, our private thoughts, the work of our hands can truly have in the larger picture of life. These are not a small issues. Eventually the magnitude and truth of who we are is always revealed. Eventually a tiny wheel barrow carried by a child that is supposed to help us feel good about hundreds of thousands of dollars of storm damage will be crushed by the tsunami of horror headed our way. Our world will never be the same for you and me beginning the events of June 26, 2015.
We cannot fix this. No one individual, you or me, can carry us through to a better future. No one: no President, no preacher, no crafty writer, no partner, no one can fix what is coming for us or carry our wheelbarrow of tears. We are alone to face the consequences of these actions. If we want the pain, the grief to stop then we will have to take our sorrow somewhere many of us have never gone before . . . But where?
We understand the dilemma inside our own home too, in another way. Last night was hell for me and Steve. In the middle of 3 1/2 hours of continuous convulsive episodes, I struggled to squeak out a request for him to carry me to the bathroom. I was also in the middle of a 24-hour urine hormone test procedure so imagine my shame in trying to figure out what to do when my hands or legs were not working right. Neurological collapse had settled in. Gratefully as soon as he got me upright and helped me with a sip of water, I could use my hands well enough to position the urine cup myself when sitting on the toilet. I was able to get the sample and dump it into the collection receptacle resting in the bottom of the tub next to the toilet. Steve then helped me back to bed just in time for the next round of head-banging, wailing, tears, and terrible pain. And so it went for the sixth night in a row.
I am grateful that when Steve is home, he is very capable of carrying me. He has done so a hundred times. He has held me through the ugliest of moments, fed me, clothed me, prayed, and artfully let his deft gallows humor fly at just the right moment in time when we both needed it! Then there were the thousands of times when he was not there and I still needed help. I needed to get to the bathroom but my legs would not move. My throat was parched from cries of sheer angst, hyperventilation, sweats episodes, and chronic dehydration. I wondered if my next breath would arrive or not. My tummy growled for hours and I could do nothing to satisfy the hunger. My brain became too numb to figure out what was in my ability to do or not anyways. Oh the neck pain from the seizing! Fearful thoughts, not my own, pushed into my mind by force of some electrical misfiring that goes with seizure activity. And I cried deeply, feeling alone.
In those moments, Jesus Christ carries me (John 16:32). I am not alone! Jesus Christ carries and equips Steve over and over again for the tasks at hand in our marriage (1 Peter 4:10). Jesus Christ will also carry those who do not know him whenever, wherever they finally reach out for help (Psalm 10:17). Our God, Jesus Christ, is worthy of our reach since He created us out of love: shown to all as He grieved bloody tears for our sorrow, our pain (John 11:35) that we endure in this life. He existed before the time, space, and material that characterizes our lives (John 1:1-4) and is the very reason that we are here. He loves us more than we can ever imagine and is always here for us, no matter what is going on around us (or within us!) (Matthew 28:20).
Further, we can never say that what freedoms we want, doubts we have about our lives, or the philosophy in our own minds will have anything to do with Who God is. God, the triune Holy Spirit, Father, and Son (Jesus Christ), is separate from mankind and is not subject to the constraints of this earthly life. Our ideas simply cannot match up. We will never fully understand Who He is with our finite minds so rejecting Him won’t get you anywhere worthwhile. The answer to our questions, our unmet needs in life is belief.
Because we are finite, we must place our belief in that which is infinite: true yesterday, today and tomorrow. The only entity that is infinite is God. He never changes. He is perfect, all-knowing and we are not. We can reach out to Him in with our tears, know that He cares (Psalm 139:17-18), know that He has our back (Jeremiah 29:11), and live on with hope for tomorrow amidst our trials, our heartache. It follows then that our victory over the heartaches of this life is in Christ alone: the Son of God. Jesus Christ, manifest in His Word (the Bible), reflected in His creation, and felt through the longing inside our hearts, is not bound by our limited view of the world. Jesus transcended this life when He died on the cross and rose from the dead. Jesus Christ will “carry” each of us through the mysteries of life to a better place when we place our trust in Him (John 3:16).
Our Lord Jesus Christ made the difference for me and Steve last night and a hundred other horrible nights. Jesus Christ will make the difference for you too in everything, Gentle Reader, whether you choose to believe in Him now or at another time. But why wait? Why not enjoy His transcendent peace, love, joy, hope, and more right now?
For the believer in Jesus Christ, it doesn’t really matter for our future, what is going on around us in the world right now. We will live infinitely longer in heaven with God than the time it takes to complain about a Supreme Court decision. Join me in doing what we can to love people, all people. Reaffirm in our minds that we ultimately place our trust in only one place: the Person of Jesus Christ. He is the One Who matters most. He is the One who will carry us from here into our blessed eternity with Him. And that is a celebration worth waiting talking about!
But, dear friends, remember what the apostles of our Lord Jesus Christ foretold. 18 They said to you, “In the last times there will be scoffers who will follow their own ungodly desires.”19 These are the people who divide you, who follow mere natural instincts and do not have the Spirit.
20 But you, dear friends, by building yourselves up in your most holy faith and praying in the Holy Spirit,21 keep yourselves in God’s love as you wait for the mercy of our Lord Jesus Christ to bring you to eternal life. (Jude 17-21)
The Lord is the one who carries me for sure. What do you say we go together?
“Keep moving forward” my brother, Mike, used to say when we were settling the estate of our dear mother after her death. The attachment and meaning of each object and task made moving in any direction difficult, confusing at times, and so very final. Then we decided to take them one at a time. Then we decided to learn to let go . . .
The unmade necklaces which would have surely been my best work needed to be disassembled today before they were ever completed. If I had stopped to make jewelry this afternoon then I would have never made my deadline for shipping Trinity Jewelry by Design to its new owner. I actually tried putting the beads back on the cotton fibers before realizing that I needed to stop and it would be o.k. to let these unmade designs go . . .
The 9-foot mural on the wall of my condo in Naperville, Illinois took a year to complete. I began with sunny colors of yellow tracing paper, pastel hues of unyru papers from India, custom-stenciled golden palm leaves, a few rhinestone swirls, lettering from a local sign shop, and a very important message about the bunny trails of life being such a very important part of the journey. “But what about the mural?” my friends would ask when moving to be with my intended beloved would take me 200 miles to the East of my happy place. Yes, finding true love required leaving the art of restoration behind: a different song of letting go . . .
When the pain of running my life on emptiness, stress, unanswered questions of “why?” and never having enough to make a difference anyways I finally crashed into the arms of my Jesus. At the time I was 29 years old, single, working full time, and forever trying to finish my Master’s degree. Then a laundrymat attendant laid out the plan of salvation and invited me to come to the table of the Lord for refreshment, forgiveness, renewal, eternal life with Him. Later that night with tears the wasted meaningless living-for-me finally did let go once and for all . . .
The hurt of wretched divorce grieves my Lord and me, sometimes even now when I have known such goodness in my new life with Steve. It took me years of harboring what it would take to even the score if given the chance: holding onto the files that would prove the ways in which I was wronged. Then I realized that the one carrying the baggage too far was me not him. I was already forgiven years ago for my part in things. In due time and with lightness of heart I finally learned to let go of that other person too . . .
Who could ever imagine the hellish suffering of these past three years with my head banging to and fro day after day? Literally, I mean, with a yet undiagnosed illness that has had too many pieces to keep track anymore. Cries out for healing one thousand times have made little difference on the surface; it’s so easy to become discouraged, to give up in motionless brokenness of the worst kind. “Who knows if the trials will ever end?” I often wonder when up late at night. We cannot know much about tomorrow so we must move along in faith today. For through faith, through Divine intervention, I have had enough grace once again to get me through yet another episode, another day. And the smallest of sweetness has come that would have been missed had it come any other way. So to the throne of grace with great expectation I do most definitely let my achy breaky heart go . . .
For who really knows when the Lover of my soul shall return in glory or to take me home? When He comes for me I’m sure I will recognize His name, His face, His comfort from all the days I’ve seen each of these before. I cannot afford to be discouraged or waste much time groaning the pangs of sorrow in this life when preparation is what is now due. It is time for letting God direct my every word, my every task: my thoughts held captive as an offering in love nothing else.
Oh how I do pray He comes soon to take me home to His mansion with many rooms and warm embrace! Yet in the meantime, Gentle Reader, my Jesus directs me to keep my eyes on Him from here and the one step of the path (that’s all) in front of me as I go. Yes, I must learn to let go of more than I ever dreamed I would need to and let it all slip through my hands to be free. My happiness depends upon this for the lightness in my spirit that will carry me to the wondrous places in life you or I may ever go. I trust that down the road a bit it will be truly beautiful and worth lightening the load a bit don’t you think? JJ
Jeremiah 29:11 (NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
Jesus is for the Wounded 
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