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
Not that I have a total handle on this topic or anything but hey, I have learned a few things worth sharing . . .
Every day for over 5 years I have suffered waking seizure attack episodes of varying duration and intensity. For over a year (ending last year) they averaged 2 to 5 hours per day! At least once per month they would spike up to 12 hours on and off in a single day, sometimes requiring an Emergency Room intervention. I have been to 3 different emergency rooms a total of FIFTEEN TIMES including once by ambulance. After nearly a year of IV antibiotics for chronic Lyme disease these episodes are generally less than an hour per day now with some positive changes in triggers and patterning. Significant testing and other treatments, research, and patient “networking” remain my primary occupation. I am grateful for the improvements that have come including overall less pain from the repeated physical trauma of “head-banging” and wretched writhing movements (thanks to periodic intervals of physical therapy and periodic chiropractic adjustments).
The journey is hell at times. At my worst times I have questioned if I could endure this level of suffering one more moment. My breathing has stopped numerous times and there has been one significant near-death experience with visions of “white lights.” I have had to pray many times for the Lord to give me the strength to get to the bathroom when alone during hours of convulsive episodes. Every type of healthcare provider I have ever seen and most close friends and family has witnessed them. My husband is a saint, having cared for me often late into the night then getting up and going to work the next day. A total of probably a hundred times he has had to carry me across our home when I could not walk, feed me, take me to the bathroom, assist me with bathing, take me to the emergency room, run urgent errands, and the like as my primary caregiver. Probably a thousand times he has volunteered to bring me some type of “rescue remedy” to attempt to get the seizures to stop (generally at night or upon waking in the morning). He never complains. He is my hero for sure.
In other blogs you will read about all the avenues we have pursued to try and get me well: chronic Lyme disease, heavy metal detox, mold remediation, obscure infections, dietary restrictions, neurology workups, dental issues, nutritional deficiencies, epigenetic testing and coaching, electrosmog, gut issues, yada, yada, yada. I spend hours per week researching, managing my healthcare, dealing with extreme mold avoidance and other preventative strategies, and accessing my support system online or by phone. Church worship is also online to minimize triggers from environmental stimuli, however this strategy also increases my social isolation. Trips away from home are generally focused on essentials during my best times of day and occasionally with transportation help from a couple of sweet gals from church. I wear a mask in their cars and sit on a towel covering the passenger seat but we find a way to connect anyways during those trips when help is needed about once per month.
As you can see, there is much abby-normal stuff during my days. Social isolation and the ongoing seizure attacks are my biggest heartaches. The latter causes both physical and emotional trauma when they are severe which still happens two of the seven days per week still marked by ongoing episodes. The two this week included: 1) a violent reaction to an ingredient in an new injected medication that I need to treat osteoporosis and 2) a new strategy to treat severe Small Intestinal Bacterial Overgrowth. Both of these conditions very likely are complications of ongoing illness as they were not present before I got sick on October 11, 2011. Each new diagnosis will bring its own special kind of discouragement if I don’t keep my worries in check with my hopes placed in the redemption promised with belief in Jesus Christ. Already I mentioned a few of the strategies I use for managing the social isolation. What about the trauma?
I manage the trauma of severe, ongoing illness by trusting in my Lord and Savior, Jesus Christ. This used to mean that I trusted in the promise of Jeremiah 29:11:
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. (NIV)
Surely if there is a purpose for all of this suffering then it won’t be wasted. It becomes part of a greater plan, encouraging me enough to endure even the worst of the pain and anguish I am enduring. This viewpoint has helped me cope during the first 5 1/2 years of this illness. It carried me through the decisions to spend the rest of some savings with the hope of a cure and to endure the side effects of such treatments. I can look back and point to the skills and information that I have learned, write about them here, take to heart the remarks of others encouraged by my stories, and note the Divine sequencing of many things that have happened along the way. The Lord has provided so much for my care that gratitude has replaced temporary doubts, frustration, discouragement, intractable pain, and so on. Seeing some meaning in what I am going through or shortly thereafter, gave both me and Steve enough hope to keep moving forward no matter what the “cost” may be. But what about when the process stopped? The money ran out. I am not recovered. There was no where else to go this past Winter when I got to the bitter end of my proverbial rope with worse symptoms than I could ever imagine! Yeah, that was the onset of facial shingles in December. More hell and a hospitalization too.
That’s when I needed to learn to trust whether there would be a purpose I could see or if there would be no purpose or direction at all. I discovered that complete trust in our Heavenly Father builds faith and the strength to carry each of us through ANYTHING and EVERYTHING. It’s a supernatural gift bestowed upon believers in God Almighty who trust Him. For those of us chosen to travel a path of excruciating suffering, we must find our way to this level of trust in the Lord our God. Our faith will grow as a result and both will carry us through the dark times no matter how dark they become. Did I tell you that frightful demonic attacks have come during the worst of the waking seizures? Yes. It’s more terrifying than I can describe but may try to do so another time. At those times only the spiritual armor of God (see Ephesians 6:10-18) and this reassurance spoken by the apostle Paul will quiet my spirit. God is greater than any threat in this world, in my world, period.
2 Timothy 1:7 (NKJV)
7 For God has not given us a spirit of fear, but of power and of love and of a sound mind.
Because what is my worst fear anyways? Dying? For me it is probably not dying but suffering even more with dying as the end result. So finding peace when dealing with the trauma of physical and mental suffering must be accompanied by the reminders of Who overcame death, in Whom have I placed my trust, and in Whom will I find victory over my fears. To extinguish the fearful thoughts I must again turn to the “sword of the Spirit” as described in Ephesians 6:17 as the word of God. In the Book of John we find Jesus comforting a grieving friend when:
John 11:25-26 (NIV)
25 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die;26 and whoever lives by believing in me will never die. Do you believe this?”
Not only did Jesus overcome the grave when He rose from the dead on Resurrection Sunday (Easter), He gave those who believe in Him the promise of a glorious eternal life in His presence where there will be no more weeping, no more sorrows. There will be rewards for the faithful too. There will be perfect peace, love, and joy forever.
I may never see healing this side of heaven. I may see healing this side of heaven. I really have no idea which one it will be or when it will happen. In the meantime I will simply trust in Jesus Christ who knows my name and sees my suffering (Psalm139) and ordains it somehow for good. He will be here with me always. I ain’t dead yet so I trust that He will add His grace and power to see me through to my last breath. Until then Gentle Reader I ask you,
If a cyanobacteria exposure in a reservoir creates the same biotoxin illness as mold exposure, then why did I not tolerate the Shoemaker protocol to recover from both?
Tis the gyrations of health, I guess, like a drone spinning out of control from the pond beyond to the one drowning in our own backyard.
If latent Lyme disease reared its ugly head but resisted treatment with 3 increasingly costly protocols over 5 years, then why do I keep barking up this fallen tree anyhoo?
Tis the juxtapose of stealth bugs who hide, change their DNA, become resistant or move from my big toe to deep within the brain raising havoc all the while.
If a chain of serious viral infections can hang their shingles on my weakened frame at Christmastime, then why does not 30 days of treatment make barely a dent in one of them, huh?
Tis the nature of complex illness when antibiotics awakens a sleeping class of infection, pushing me to a sideline call more spectacular than a Super Bowl play in overtime.
If heavy metal toxicity met its match with the best testing, detox protocol, and success, then why is it still possible that more mercury, lead, and maybe aluminum may linger undetected in me still?
Tis the nature of blood, urine, and hair sampling that only captures that which is circulating or secreting not the poisons imbedded in tissues only a needle in a haystack would find.
If I can gain 34 more diagnoses with one trip around the calendar trying to get well, then why would we even question that there’s a need for a new tune, a break, and yet more prayer?
Tis the nature of hopes dashed while waiting and seeing what may come (not wasting time asking “why” instead of professing “I will trust you Lord. Show me how. See me. And love me through it too.”)
If when married in the past and health challenges that now look like child’s play came but crushed life as I knew it, then it would be many years later that my intended beloved would show me true love: how true faith conquers all, overcomes.
Tis the nature of fake religion which fails when life gets hard. A God-fearing man seeks the Lord. A God-fearing woman does too and this will be our calling card when this chapter of our lives is through.
And if my writings, my research, the doctoring, trial-n-error, or treatments really worked for something good, then why the heck would I still be seizing each day with “the flu” and pain that has marked 5 years of disabling suffering?
Tis the mystery of bothering to recover, trusting in the Lord who has saved me from far worse knowing that one day we shall rejoice, you and me Gentle Reader, if we but hang in there a little longer with hope beyond the gyrations of this life.