Please forgive me for leaving you hanging, Gentle Reader! I left you hanging by a thread in this blog almost 2 weeks ago. Clearly I made it out o.k. from the doctor’s office!
Since there were many hairy details in the horrible situation I was in on July 29th, I will shorten things up a bit here. In my last post, I ended whilst lying on my side, paralyzed and inches from the floor after a convulsive episode in the exam room of a Physician’s Assistant (PA). The second of two severe seizure attacks had occurred since entering this room and the second of two episodes of neurological collapse was in progress. Eventually the PA returned and forgot everything I had ever told her about what to do in this circumstance; she even forgot that in the first episode (that she had witnessed) I was unable to speak or move. All she kept asking was, “Do you want me to call an ambulance?”
Finally I was able to break through what was happening in my brain to express the greatest need in my life at that moment, “PLEASE REMOVE MY GLASSES!” As she wrenched my neck and lifted my head I screamed in excruciating pain from having had my eyeglasses and sunglasses wedged against my face for so long. Extreme sensory sensitivity accompanies the worst convulsive episodes; pain in particular is magnified as if you had tried to electrocute me! So when the PA tried to remove them, it was as if a bolt of lightening had jolted through my face! She asked again about the ambulance. “Did I want to get up onto the table to be more comfortable?” I could not speak or move at all. Then she left. A long time later she returned. Then she left. A long time later she returned. Then she left.
To pray was my focus since the trained medical professional was of no help! Thankfully after a long time, it was the Lord Who helped me twist and turn my torso so I could lie on my back across two chairs with my legs pulled up underneath me. It took about a dozen tries before I could lift my head segmentally to reach a sitting position with my head supported by the wall behind me. Never did a wall seem so comforting . . .
Eventually a nurse, the really sweet one, came into the room with a wheelchair so I could be taken to the bathroom. Herein I benefitted from my training in transfer techniques as an occupational therapist. My arms were starting to regain motor control but my legs were like dead weight . I lifted them one at a time with my right arm (more functional than my left) off of the leg rests of the wheelchair and onto the floor, braced myself with the grab bar along the wall next to the toilet and pivoted myself around; I reversed the procedure with more adaptive techniques to do all of the things I needed to do in the bathroom. By the time I was wheeling myself out of the bathroom, the really sweet nurse had returned to take me to the hospital in the building next door. At last, over three hours later and feeling majorly beat up, I would be getting the IV fluids as ordered!
Unfortunately the IV “Lactated Ringers” didn’t help me much. The nightly convulsive episodes returned followed by wake-up tazoring the next morning. I was so beat up from everything. The following evening I did make it to the grocery store when things had temporarily stabilized. Such an ordeal! Calming my anger at my medical providers has taken every day since then. The doctor never mentioned it when I saw him last week. He did not even ask if the IV fluids helped me to feel any better. Sometimes that guy is just too focused on test results (or whatever) to examine the overall process of this patient’s sickness, the clues that might be hidden in plain sight. Oh well. The second appointment to review additional test results last week was cancelled (as are about 35% of his appointments). A minor flare up of the ol’ anger distracted me once again, gratefully for less time . . .
So who really cares if I live? Suffer? Die? I have spent the last 15 days meditating on this. The real question emerged beneath these cries and it was not to find out if anyone really cares or not. There are people in my life who love me and for this I am grateful. The real question turned out to be whether or not I had submitted this illness to the Lord as a living sacrifice. Who is really in charge here? Did I offer it to the One Who sees all, loves me more than anyone? Could I view laying this illness at the Lord’s mighty throne of grace as an act of both obedience and worship? He calls believers to do this, by the way in Romans 12:1-2
Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship.2 Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will. (Romans 12)
The Lord knows that our bodies are not perfect and that our world is not perfect. Why would the God of the universe desire me to make alms to Him with my weaknesses? He desires our devotion in all things and loves me and you just as we are. But wouldn’t he rather have a tithe or act of service? NO! He is God not some distant authority figure or Santa Claus. He loves us, has mercy on us, completes us, pours out His blessings, defends us, and promises to make good out of the fallen things of this world no matter how ugly.
1 Peter 5:6-11New International Version (NIV)
6 Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time.7 Cast all your anxiety on him because he cares for you.
8 Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour.9 Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.
10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.11 To him be the power for ever and ever. Amen.
I am holding out for the promise that lies within these words. He will restore me in due time. Who cares for me? Who cares for you? The Lord Jesus Christ, that’s Who! In Him we will find rest no matter what may come our way. We can be sure of it! JJ
Obedience is one of those words like “discipline.” Not popular either one of them, yet both separate the whining cry babies from the mature adults amongst us. For believers in Jesus Christ, obedience matures our faith and transforms us into the image of Christ (a work never completed during our lifetimes). In our humanity our flesh tugs at us to rebel or be tempted in directions other than the leading of the Holy Spirit. But by focusing on His incredible gift of grace, studying His holy Word, and submitting to the leading of the Holy Spirit we will end in a better place for sure. I have seen it in my own life and in the lives of others. His will is best. His timing is best. Why? Because He loves us and because He is God!
These thoughts came to me after reading an interview of Ravi Zacharias in the RZIM Summer 2015 newsletter and listening to a message by Pastor Paul Mowery of Harvest Fellowship in Leo, Indiana. At the close of his message on Romans 11, Pastor Paul encourages us to “be about worship,” praising His great name for having mercy on us as recipients of the Lord’s grace. We are not to dwell on what each of us may have done that draws attention to ourselves. We are to be about Him: worshipping our Father God.
Lately I am struggling with these themes. Many of my posts here have tried to pull something meaningful out of the challenges of a wretched illness. As the days wear on with the setbacks of late, I have found myself literally screaming out my anger at God with the wails that accompany the convulsive seizures. “Why do you hate me?” Oh yeah, it’s bad. Even my beloved Steve who has been at my side during a fair amount of this hell admits his anger at God. And we are convinced that this is an o.k. thing to do. It is not an o.k. place to stay, however. And it is certainly not an acceptable attitude to act upon.
You simply cannot be angry at someone whom you do not love dearly. Such is our dilemma. We both love the Lord, Jesus Christ, and are humbled, grateful for His mercies in each of our lives. We have so much goodness between us! We are grateful for so much! And in our humanity we are broken and don’t like the brokenness. Way down deep we are hurting and it is this hurt that fuels the anger. Admitting this will be the way out, the way back to fellowship, the discipline that will bring obedience, the song of worship yet to come . . .
7 So, as the Holy Spirit says:
“Today, if you hear his voice, 8 do not harden your hearts as you did in the rebellion, during the time of testing in the wilderness, (Hebrews 3)
Therefore, holy brothers and sisters, who share in the heavenly calling, fix your thoughts on Jesus, whom we acknowledge as our apostle and high priest. 2 He was faithful to the one who appointed him, just as Moses was faithful in all God’s house.3 Jesus has been found worthy of greater honor than Moses, just as the builder of a house has greater honor than the house itself.4 For every house is built by someone, but God is the builder of everything. (Hebrews 3)
6 being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. (Philippians 1)
Today with the faith of a mustard seed (that I understand is rich in nutrients of which I am needing anyways!) I will choose to honor and worship the Lord, my King. He has built this frame in which I dwell and within it dwells the Holy Spirit. Broken or not, it is the vessel from which I will praise His name all of my days. I lay my angst on His mighty throne of grace, with great expectation of His promise to redeem it for His glory.
May He be glorified in all. My Jesus. My all in all. Worthy of our praise. Worthy is this Lamb of God! 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)
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