“Look up. Look waaaaaay up,” were the words of The Friendly Giant in 1986. This American children’s television host invited the viewer into his miniature living room where he pulled out a chair just for you by the fireplace. Then an image of his fake leather boots appeared 10x the scale of the scene on the television as he invited little Sissy or young Bobby to follow the camera up to the smiling eyes waiting to tell a story, waiting to introduce you to a host of characters. Rusty the Rooster was a silly-looking puppet yet their banter held my attention all the same. Even though by 1986 I was not a kiddo anymore!
We often look up to see the wonder beyond us: gazing at the twinkling stars so visible in the crisp Fall air or maybe oooing and ahhhing at the bright ornaments adorning the department store Christmas trees already on display before Thanksgiving. There is something magical about a beautiful sight just beyond our gaze, just above our smaller human frame. When that object is but ordinary the wonder may be less yet the opportunity to reflect may be just as profound too.
The ceiling above my bed of sickness holds much thought these days. On a Monday I might see a simple popcorn ceiling in the same building contractor’s white paint of every home built that very year. A few days later it may be the seam tape of the electrical lines painted to match the composite panel lining the roof of an aluminum travel trailer. Two months ago it was a bright blue shade sail floating softly up, gently down above my patio chair when the weather was still sunny and warm. Such simple forms that served to give me pause from the mayhem of the hours that dragged on before . . .
Times like these are best spent dwelling in the presence of the Lord. No words fill my mind in those kind of moments. The tears are already spent; the energy almost completely drained away. Such is the aftermath of uncontrollable seizure attacks that plague my weakened frame day after night after day for hours without end. The pattern continues despite new anti-microbial treatments, tests, consultations, prayer, tears, strategies new and old. New pains come and find a way to stay. There is nothing left to say. There is nothing left to do but to dwell, I guess.
Even love can be like this I suppose when it hurts so bad and you still can’t seem to shake the pain away. All you do is focus on the form that you knew or still know that stands in front of you when only a blank slate emptied of your future together remains. Turn to the left, turn to the right, stand up, sit down, and unlike the cheer song at the football games in 1986, there is no fight! Fight! FIGHT! when love goes away for good. Oh how I long for the familiarity of the pains I had known long ago. It would be so much easier to handle than the emptiness of my heart this night. Yup. The joy is gone! Gone! GONE!
So what’s a middle-aged gal to do in the middle of the night and there is nothing to look up to anymore? When I have written more words from every angle that my heart can imagine and no new inspiration comes to fill the page, gosh, what will I do? Not much, really. Just wait I guess. Tomorrow is a new day and it will be here before you know it. Maybe something good will happen, eh?
In the meantime, won’t you hang in there with me? Here, I have pulled up a chair for you too Gentle Reader. The Friendly Giant is now known as Immanuel and has a special story to help us end this little time together. It’s a great read for a bedtime story at any time of the day, I promise.
The first video of my Do It Sick Chef series is now available on Vimeo!
In “Let’s make something that resembles lunch,” I literally get out of bed to make real food in a real kitchen that includes: a veggie-n-meat entrée, ghee butter, and roasted turnips. Roasted turnips? Yes, you got that right! Special diets require new and sometimes unusual food choices. Just Julie will show you not only how to make these dishes but how to prepare the food saving money, time and energy.
Future videos that are already in the works will cover the topics of freezing foods for easier meal planning, a stand-alone segment on ghee butter, kitchen organization to save energy, and more. You are invited to “Like” my Hope Beyond Facebook page to keep up with future videos and share your meal planning, preparation, sanity tips too.
Take care, Gentle Reader. Lord willing, those of us battling serious illness are going to get well! JJ
One of the movies that has really resonated deeply with me is, The Breakfast Club. Please see my previous post for the catchy theme song that underscored the film and one of the most poignant scenes that is also pertinent to Part 2 of this 3-part blog.
In Part 1, I described the isolation that I have felt when enduring a serious illness and how the Lord still gets me through the toughest of days. His Word is my greatest comfort; the leading of the Holy Spirit and His presence are my greatest companions. I ended with a question,
But how well does he really know me?
Sure, my Lord crafted me before I was born and set forth all that I would be, all that I would endure and accomplish. His Words in Psalm 139 declare that He knows my “innermost being.” Does this include the longing of my heart as well? If it does, why has He allowed me to become so dreadfully isolated?
Maybe someday I will get to see why so many family and friends have chosen to “walk on by” me as it says in the theme song of The Breakfast Club. Have I not been a good friend? Maybe I was not. I remember about two years into this ordeal someone contacted me and asked me about getting together for coffee. I replied “yes” and then I never heard from her again. My spirits had soared then crashed and burned. For believers in Jesus Christ, the answer to the “why” question is usually left for eternity. We simply may never know “why” this side of heaven.
Those of you not living in isolation may not have any idea how much Satan uses this experience to tear a person down. He can prey upon all of our negative emotions and be allowed to create havoc in our lives. (Yes, ultimately God is still in charge!) Yet I know that it’s really not about resisting Satan or about losing the people in my life. I resist the devil and his demons with the sword of the spirit: the Word of God as described in Ephesians 6:10-17. People come and go in our lives and that is the normal ebb and flow of life. It really is about my response to the taunting, the loss of these relationships.
My challenge has been particularly great due to the effect that this chronic illness has had on my brain. Responding to Satan’s lies and the loss of relationships has been affected by the change in brain chemistry that came with chronic illness. My ability claim victory in the name of Jesus Christ and fully embody the companionship of my Lord have been affected. Satan’s lies have been magnified. My social skills have eroded. My ability to think clearly has been altered. And I struggled to override these skill deficits but could not, even if I tried. Allow me to explain.
Only recently did we discover that excessive neurotransmitters called catecholamines (epinephrine, norephinephrine, and dopamine) are likely contributing to my mood changes, thinking and communication skills in addition to possibly causing the convulsive episodes. This is happening due to the expression or “turning on” of polymorphisms (SNPs) or breaks in several enzymes that help form my DNA code. The DNA code is the instruction manual or blueprint from which the body functions. Everyone has a unique combination of broken SNPs that get turned on by illness or significant stressors in the environment (such as exposure to mold). For me the factors included everything that I have written about in this blog: biotoxin illness/hepatitis, latent Lyme disease, Candida toxicity, mold illness, infected root-canaled teeth, and mercury toxicity. That’s a lot of stressors! These illness and environmental challenges became a trigger for disaster. I even have the data to prove it, all of it!
For some people this process manifests as a Mitochondrial Disease or a disruption in the methylation cycle inside the nucleus of the cells of our bodies. My thought life was affected. My mood was affected too. I had waking and nightly nightmares not based in any reality past or present. Those were internal things that my beloved husband, Steve, and the healthcare community could not see very often. Several healthcare practitioners labeled me as having a mental illness of sorts, often without even completing a mental status exam or workup! Gratefully, Steve believed me. They all saw the wretched convulsive episodes that have plagued me for hours every day for 3 1/2 years. And Satan was allowed to enter into the whole dynamic with lies and attacks that I will definitely write about at another time. Absolute mental and physical wretchedness.
But now the gig is up! Two days ago I woke up from a lovely nap after starting to treat this condition. I had my first 16 hours seizure-free! It’s as if someone turned on the lights in my brain! Not only do I have a formula for correcting the brain-part of the process but the prayers of deliverance against the spiritual warfare are taking hold. The cascade of negative mental, physical, social, emotional, and spiritual suffering is beginning to turn around. Lord willing, I am going to get well!
My Jesus knows all about every aspect of what I have described here. He also knows the desires of my heart. How do I know this? My prayers long before this illness began was to become whole. I had been broken by the consequences of a hard life: events out of my control. Many times during trauma the Holy Spirit would bring encouraging scripture to me that kept me moving forward. Yeah, finding hope and finding myself has come through horrible, ongoing isolation and trauma. I have worked hard to recover from so much suffering in my heart, my mind, my body. Each step of the way has been both painful and meaningful. Yet I tell you, Gentle Reader that nothing has been wasted! I have learned to trust the process in EVERY CIRCUMSTANCE under the protection of my Lord and Savior, Jesus Christ. And now the desires of my heart are being realized. Cool beans.
So how does one rebirth the desires of one’s heart?
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