Google and Google Scholar have gotten way too much traffic from me these past 8 years of battling serious illness. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.
And so I shall.
Facebook has been my link to the world outside the comforting yet speechless walls of our home when there were no more folks to call on the phone. A recent relapse in convulsive episodes brings a state of mental fog afterwards. While not a true “post ictal” phase of an epileptic seizure, it is still a time when goal-directed activity (as I used to call it when working in my profession of occupational therapy) simply does not occur. Reading short phrases while lying in a passive state is about the best I can do. Well, except when my beloved is nearby and comforts me dearly. But I follow way too many disease-oriented groups on Facebook so spending time there is not really a break from life, a connection to the living, or even as entertaining as it once was. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.
And so I shall.
Endless planning in my mind or on the calendar on my smart phone has increasingly become a source of frustration rather than relief or even hope. Focusing too much on the future brings tomorrow along too soon, robbing me of the gifts all around me in today. I simply don’t know when-or-if I will be a candidate for parathyroid surgery now that I have a diagnosis that explains so very much of what is wrong with my health. I simply have to wait for others to review my case and call me. Steve and I will adjust our schedules and lives accordingly. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.
And so I shall.
Gardening has become both a hobby and source of identity when my role as an Occupational Therapist went away. I am grateful that a couple of months of better health in the spring allowed me to largely finish a rain garden project in my community as a Master Gardener. My volunteer work continues as the Assistant Editor of the quarterly publication, Canoe News (of the United States Canoe Association), and Editor of the monthly newsletter, Across the Fence (of the Master Gardeners of Purdue Extension, Allen County). Often these are difficult to get done; somehow with the Lord’s grace we do. But I am struggling to keep up with our own landscape that requires daily maintenance and some brute strength that is tough for me to do these days. The degenerative changes in my spine are not going to go away so what will I/we do about all of those flower and fruit and vegetable beds out there? Keep watering for now, pray about it, and realize that it’s probably time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.
And so I shall.
Gee, suddenly I feel less stressed about things. Thank you Jesus. You care about these issues in my life and in those of the Gentle Readers out there too, holding every one in the palm of your hand, the love in your heart, with the promise of your return. Things will work out according to Your Divine plan for our lives. In this we can rest tonight.
Dinner out with family celebrating from 3 states or an Asian wrap alone at the messy table where you finally were allowed to finish your holiday activities with some kids . . .
A rental car authorized by your insurance company while the truck gets repaired from the deer or a silver beast machine that at least doesn’t reek like a fleabag hotel . . .
An upset stomach that lingered for weeks or a working diagnosis of a peptic ulcer that reveals that the stress was more than just a little of late . . .
A cold sore that just happens from time to time or a flare of wretched shingles caught in the beginning stages, THANK GOD . . .
The stuff of life making a rough landing all at the same time or a financial train wreck in the making as Christmas gift-giving rapidly approaches . . .
Tears of frustration from “not good enough” criticism in a new editing role giving way to compliments from out of no where just 3 months later . . .
Doubts of your acceptance in community volunteer roles with new folks who don’t know your history to appreciation for being part of the team . . .
Missing my husband dearly as he is away travelling to the non-starter reunion when having to practice extreme mold avoidance still . . .
Tears of grief from so very much loss shaking my fragile frame to the bone to a slow recovery days later with a few convulsive spikes here and there . . .
Powerlessness to minister to my brother who suffers post-stroke much greater than I to finally figuring out something I can send him to really help . . .
I really could go on. It’s just not the same thing when things really do go from bad to worse and you wish you had not feared for the worst because things can really go either way . . . and sometimes they actually go better than expected. It’s all a matter of perspective in the end, right? Ugh. Clearly I am witnessing both phenomenon. Really makes for uncertain living, I tell ya.
So what shall I do? To stay in the moment as best I can is what I shall do. Nap when I can’t concentrate anymore. Pet the pup for more than a moment ’cause she likes it too. Do something nice for my beloved Steve. Move my Bible to that more secluded spot where I can spend time with the Lord without as many distractions. Dwell and pray, pray and dwell in the presence of my Heavenly Father Who can lift my spirits above that which troubles me each day. I have given myself over to worldly worries and it is not the same thing as giving it all over to Him. I surrender. I don’t know what got broken that I landed here but at least this one I do know how to fix. Lord willing, things will get better! JJ
He left before I woke up and long after I was up in the middle of the night baking him cookies for the race. Another strange night it was. I had crashed early in the evening, many hours before my bed time . . . not that there is a usual bed time, that is. I am still up very late about 2 nights per week yet that is a huuuuge improvement from my years as a night owl. But my tummy hurt and I just couldn’t stay asleep. All I could think about was those cookies that I wasn’t able to bake as promised and the risk of my beloved River Bear collapsing in the river the next day. So I got up and started mixing up the ingredients sometime after 2:00 a.m. The story was unveiling vividly in my mind as the scent of baking chocolate chips and Irish butter filled the air . . .
My beloved would be paddling a new-to-him Wenonah J203 carbon-fiber marathon canoe, probably putting him at the back of the more accomplished river rats on Saturday. They all would be pushing their limits in the cold and rainy weather, trying to get back into shape for the upcoming race season. RB would be no different. The only difference is that he would be competing with a sinus infection on top of some chronic breathing issues. The realization of the risks was just enough to drive the mind wild of a kayaking-turned-canoeing “widow.” Yeah, I don’t see him much during the Spring-Summer-Fall racing season so temporary paddling “widow” I become!
Today was especially of concern. If he got a coughing spell when on a remote part of the river, spread out for miles over the course with the other dozen-or-so racers, there’s a good chance that only a real bear in the woods would have heard him struggling. His brown, furry cousin probably would not have minded my beloved’s residual garlic breath as he munched on his serendipitous, soggy lunch feast. But that was not the worst of my worries. More likely another racer in an equally tippy performance kayak would see my beloved slumping forward, splash into the water to save him, and be unable to do much of anything about it. I foresaw in my mind’s eye that probably would be LB, of course.
She in her 4-foot 10-inch frame would jump out of her boat, neither one wearing a life jacket despite the cooler water conditions, and wrestle with RB’s muscular/lifeless body as it flopped into the current of the Tippicanoe River: he almost 70 pounds her senior and her struggling to keep both of them afloat. The river would win and down he would go. She would be traumatized and exhausted from the fight against the swirling water, the soaked mass of a man, the expensive boats and paddles flowing downstream, the desperate feeling of not being able to save him no matter how hard she tried. I could see it all in my mind’s eye, of course, in an instant. I had been in a similar situation myself just 8 years ago during my first encounter with a performance sea kayak on the Allegheny River. I feared for my life!
Back at the boat launch or maybe when she could signal for help, LB would desperately reach out. The fellow racers would leap into action, scouring the shoreline for signs of the man who teased them hours earlier with a craft beer for any seasoned canoeist who could beat him on his maiden voyage that day. They may or may not find him or his gear. The rescue boat would eventually arrive, find and take his body to a local hospital for the fateful pronouncement. The paddlers would stand in a circle at the take-out speechless, none volunteering to call the wife over 100 miles away who had sent along home-baked cookies for the annual meeting afterwards. No one would be brave enough to call her or maybe the Fire Department would at least leave a message?
Do they ever really tell you all of the news anyways that you need to know when you get a dire phone call at a time like this? I would then be in my own racing seat as I made the 2-hour drive to the Lafayette area, wondering if I had the right name of the facility where my RB was being held under refrigeration. Perhaps I would drive from facility to facility searching for my loved one? And what would they tell me when I found him? Would anyone be there to tell me the story of what happened? Would the racers have taken a luscious cookie but gone on home anyways, themselves suffering from the trauma of the friendly competition gone wrong?
And what would I do next? What about the pup at home, the phone calls that needed to be made? I would probably have to stay over a few nights to release my hubby’s body to return to our home town on Monday morning and begin preparations for the worst event of my life: a funeral! I have done this in the past a few times and it is exceedingly and painfully difficult. Oh dear, what would become of my elderly family member out of state for whom I have become a measure of a caregiver? Where would my beloved’s children stay, what would I say when they arrived grieved beyond belief from all over the country and 2 foreign countries? Holy cow. Maybe I would just sink and die myself right then and there rather than deal with it all.
Or maybe not.
Twelve hours and 2 naps later, I heard the side door open. My River Bear was home!!! I was in shock. Where did I just go in my mind and my heart for way too many hours? In what or where have I placed my trust? And why the heck am I so very needy, so weak, such a worry-wart when the Lord has been faithful to lead me through horrible tragedy dozens of times before. Is this mental exercise really helpful at any level? The answer: NOOOOOOOOOO!!!
I have come to realize that there are a couple of coping mechanisms that come with enduring serious illness for many years that don’t work very well at all in a fit brain. One of them is living each day with a sense of impending doom. When virtually every night and every morning for the past 6 years was met with violent convulsive episodes, I lived every day with a sense that bad things were always going to happen. It was just a matter of time before they did. Well guess what? The convulsive episodes don’t happen every night or every morning anymore! I have got to let go of this “stinking thinking” as we used to say in my 12-step group days. Husbands virtually always come home. And if they don’t right way, they usually have an amazing story to tell that makes you fall in love with them even more!
Another coping mechanism that got exercised in writing this story was that of always needing a contingency plan. More recently, every time I would plan to do an activity at home or elsewhere I set up alternatives in my mind of what I would do in case I got sick. I told RB my plans for the day, I had every “rescue remedy” I could think of in a lunch bag with me, and kept running errands until I was exhausted — just in case I was too sick the next few days to leave the house. As you can see from the bit of paddling fiction above, I listed a few of the questions running through my mind but in my head, many more options and scenarios were playing out in my mental tool box. What a colossal waste of physical and emotional energy! While a “scarcity” mindset may work in times of famine or flood, I really don’t need it with me anymore. Me and the Lord will figure out whatever may come my way. Geez!
Of course an obvious failed coping mechanism is last on my list today: a false sense of control. I cannot predict anything that will happen, good or bad, and neither can you. If I truly trusted the Lord with my life in times of tragedy and triumph then I would not need these fantasy games to cope with the fact that I have a REAL MAN who LOVES ADVENTURE no matter if he is sick or well. That makes him who he is! And his passion for life makes him the man in whom I fell in love over 10 years ago. No wimpy dude over here! He pushes the limits to the admiration of his peers and sweat of his competitors because that is just how he is wired. I guess I am still understanding how different we are, how different the Lord wired each of us. It is a beautiful thing really. And, Lord willing, my beloved will always be home at night in pretty darn good shape too, I will add! :J
5 Trust in the Lord with all your heart and lean not on your own understanding; 6 in all your ways submit to him, and he will make your paths straight.
So the next time my man goes out to do that which he is called to do, I will pray for him and for me both! I will not respond with fear but anticipation of some great stories in which I may one day join in, Lord willing, as I get stronger each day. The day is coming soon when I will want to venture myself out into newer, uncharted waters, so-to-speak knowing that my Lord and King is already there, cheering for both me and my River Bear. This could really be a fun summer after all. I often cheer, “Goooooo Steeeeeve” from the side of various rivers when my beloved’s paddle hits the water at the sound of the starting gun. Maybe it’s time for a little, “Gooooooo Julie” too?
Stay tuned. There’s always another story waiting to be told around here for you Gentle Reader. The water awaits! JJ
The little reminders that things are going to be o.k., that the Lord is in charge, and that you have all you need are quite an encouragement to me today. I am seeing this more clearly as my head clears after a whirlwind “Plan B” long weekend.
We never made it to Branson, Missouri for the celebration of my Other Mom’s (aka mother-in-law’s) 80th birthday celebration. Family was scheduled to land there from 4 States for a long weekend including the 4th of July. My Other Dad (aka father-in-law) had an acute worsening of multiple joint pain and was unable to drive the two of them cross-country from California to Missouri so we made the decision to do what was best: cancel and reschedule the trip for the Fall. We all scrambled to cancel various reservations made for camping, cabins, the Dixie Stampede show, watering of the garden in our absence, etc. Then this wifey-poo decided she still needed to get away . . .
Meanwhile, my life continues to be dominated by the treatment of chronic Lyme disease, a serious fungal co-infection (protomyxzoa rheumatica), and the complicated detox/supplement regimes that go with it. While I am grateful for a solid treatment plan, the making of our home into a hospital plus the tangible reminders at home of thousands of hellish convulsive episodes begs for a change of scenery when possible. Sure looked like the enormous effort to get away was going to be worth a bit ‘o respite from all of those reminders. I reacted selfishly when everything changed. I was more crushed for my own sorry lot than my mother-in-laws cancelled family gathering, big birthday celebration. Maybe I need less of “poor me baby,” sentiment, eh?
Steve and I thought through our options. We had cancelled supporting a paddling race in a town about 100 miles away since we were going to be gone so we re-volunteered to help out and bring our Stellar kayak display. But travelling a total of 200 miles plus standing out in the hot sun all day recording race times and hosting Steve’s booth seemed a bit much after 3 straight days of IV antibiotics. So what about camping afterwards? In the end we worked into the wee hours of the morning the night before the race to make Plan B a reality!
Supporting the race.
Finishing up all shopping plus cooking within a day for my special diet.
Making new reservations to camp in 2 places over a holiday weekend beginning north of the race and en-route to a new destination.
Continue north to Silver Lake Dunes and the campground adjacent to a Christian camp where a young couple we know has worked for about 7 years.
Return home after the 4th of July for Steve to return to work, allowing him to finish some important training and projects that we would have missed had we gone to Branson.
Resume treatment at home after a 5-day break.
Commence about 8 loads of laundry, post-camping melee, etc. too!
So with a tremendous effort, the ebb-n-flow of violent reactive episodes that followed being off of my treatment schedule, and some sweet memories sprinkled therein we had a decent weekend overall. At some level I exclaim: how crazy! And: Is it worth it? Well my answer this time is different than in the past: NO! There still are too many noxious exposures from campfires in any campground to succeed at avoidance even inside a modest travel trailer. There is always some type of breakdown that ends up stressing us out, creating conflict even nearly 5 years down the road from dealing with this serious illness. When we got back I was ready to sell the travel trailer the Lord had provided the resources for almost 3 years ago. What were we thinking back then anyways? Trying to continue with a normal life was my focus then when I did not have a clear treatment plan. Killing the beasts within me at an extraordinary cost is my focus now. The proceeds from the sale could pay off some of our debt. I was ready to let it go should the Lord be leading me to do so.
In a Christian marriage, the husband is the God-ordained spiritual leader of the home. His headship is God’s design for the protection and provision of his wife and family as he follows the leading of the Lord. I have come to trust this, be blessed as well in submitting to Steve. As it turns out in the scenario I have shared here, Steve suggested that we wait to make a decision about the trailer until later this year. We have a couple more trips planned and it is clear that he wants me with him on all of them. How sweet! His love is amazing. We will make some further adjustments in how we handle things next time and hope that I will be doing better as my treatment progresses; going with a partial treatment holiday could work out better for travelling than dropping everything, Lord willing!
Oh did I mention the blue footies yet? I bought a large box of disposable medical shoe coverings in anticipation of developing a new product this past Spring. (I could earn some money to pay for the development of my real invention by my company, Two Step Solutions, Inc.) Attaching a Swiffer-style duster with Velcro to the bottom of a disposable slipper makes a great foot-broom for dusting wood floors. This saves a lot of time and effort as compared to other cleaning methods, IMHO! Then when I continued to have difficulty functioning, the idea got shelved instead of developed. Dang! Flash forward 2 months later and those cute booties are part of the garments I ask my home health nurse to wear to avoid chemical/dust exposures when administering my IV antibiotics three times per week. Works great! And in thinking through all of this today I am reminded of these truths:
John 16:33 New International Version (NIV)
33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
Matthew 6:25-27 New International Version (NIV)
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?27 Can any one of you by worrying add a single hour to your life?
My Heavenly Father and Husband is so good to me. He loves me so and I get to feel it everyday in the arms of my beloved Stevers. The Lord is there in times of wretchedness, times of joy . . . none of it will be wasted as He leads me home to dwell in the heavenly mansion of many rooms, near the river of Life, with the saints who have gone before me sheltered in His majesty beyond imagination. Thank you Lord that you sprinkle some of that goodness into my days to encourage me, to encourage my beloved. Thank you for caring about all the details of our lives. I submit them to You. We will wait upon the Lord, Jesus Christ, until You walk us home to sit at Your feet in awe and wonder of all that has gone before us: from blue booties to a lighthouse along the shore.
This rings true above all else: You are so good to me. Thank you Lord.