Tag: illness

Bouncing along a bumpy road

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Home alone, the moment clarifies the mind

No distractions but the one in my tummy or bladder, alas step aside

The me that is Julie still wants for something more

Too much sorrow hath dimmed the light on this bumpy ride.

There is an up for every down, even ones ending in death

For to be absent from the body is to be present with the Lord.

So how can I complain this side of heaven with so much goodness here

But have I weighted my health above all else, shrouding my view, my words?

Dragging along but making the hard choices needed to be made

Releases my beloved to pursue what makes him Steve one weekend —

Trusting that my Heavenly Husband will calm my fears, carry me through.

We shall have a truer assessment of my ability to live

When my Intended Beloved is not rushing to my crisis, again and again.

I still hate this illness. Oh Lord I know that You see

There’s so much more I want to do, to really be.

Feelings have led the train of my thoughts instead of faith

I must kick them to the caboose, the facts must reign.

How many blogs, how many lines of text

Must I spend before my heart

Rests not on my sleeve?

Sickness be damned.

I surrender to my Lord.

There is no other way forward.

In all things, Gentle Reader.

He must reign!

Yes, in all things.

This road near Palisades, Idaho yielded incredible views beyond

If only I knew

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If only I knew back then what my new life would be like, would I have chosen it? Probably not.

The summer of 2007 was a very exciting one for me. I had just met an amazing man of God and had established myself in a beautifully decorated condo in one of the nicest suburbs west of Chicago. I had a great job that paid my bills along with some extra resources that I inherited when my Mother passed away. The grief associated with her death was complicated by navigating the affairs of her estate. Regardless, a new love makes everything nicer, lighter, and bearable even exciting. In due time I would come to understand my Pastor’s advice not to marry in the same year that I lost my Mother to her complicated health issues. Steve and I married at the end of the year anyways and I was off and running in Indiana with my Intended Beloved. God was so good!

Before long I was completely overwhelmed by all of the changes in my life. When I worked in mental health, we used to give our patients a Stress Management Scale to check off how many changes they had experienced in the year prior to hospitalization. Life events were given weighted scores, tabulated, then matched to a scale predicting susceptibility to illness. Yeah, my score was over 300 which is ripe for a stress-related illness. But thankfully, it didn’t happen. The adjustment to a new family life, State, house, church, job, pet, grocery store, bank, yada, yada, and husband was still completely overwhelming. Then I had to leave my new job in Indiana to find another because of ethical issues. Holy cow. It was a lot of changes in a very short period of time!

Then my Dad, who had been estranged from our family for 27 years, contacted my brother in Michigan. Mike was still living in our Mom’s house so my Dad was able to use our old phone number to reach him. Soon I was in touch with my Dad as well, catching up and trying to figure out how to deal with the sordid memories and circumstances of his leave-taking from our lives so long ago. Overall it was a good process. He was kind and generous. He shared stories, many of which I hadn’t remembered. After a few years of slowly getting re-acquainted, it was time to meet in person at his home in Florida. Mike was invited to go separately but never accepted the offer. I did. Steve and I went under an extremely stressful set of circumstances with my job at the time that would later magnify how important that visit to see him would be to my future. It was really good to see my father again.

Less than 2 months later, my Dad passed away. Mike never got to see him. My own visit and especially having shared it with Steve, were instrumental in figuring out how to manage my Dad’s affairs from where we lived in Indiana. We had a dinner with my Dad’s “tribe” of friends along the Forgotten Coast (so telling, eh?) of Eastpoint, Florida instead of a funeral per se. And over the next year, it would take dragging my brother through endless legal procedures to settle our Dad’s estate especially the selling of his truck. Later on with the inheritance that I received, I bought a newer truck like my Dad’s and became a woman who drove a truck — NOT a compact SUV or car like every other woman I knew drove! After all, I now lived in Indiana. Seems like every 3rd person here has a truck for work or various projects where ya gotta haul something from here to there! I liked gardening so it worked better for me than my Hyundai Tuscon. Over the next 4 years I finally had an opportunity to take the class to become a Master Gardener. Perhaps the truck was part of the overall uniform? It sure hauled a lot of soil and mulch, paddling gear and other stuff. How did I ever live without a truck in the suburbs of Chicago? Well gee, back then I lived most of my years in a townhouse then a condo!

My life drastically changed at the end of the same year of 2011. I was barely past the grief and memories stirred with the ordeal of my Dad dying when I contracted a serious illness kayaking in a local reservoir. Perhaps this stressor finally broke me down. Viral hepatitis became the first domino in a cascade of serious health issues that challenged even our brilliant family practice physician. Sure I had some hormonal and orthopedic issues in the past, even chronic pain, but nothing compared to the daily convulsive episodes and myriad of severe symptoms that beat up my body as I practically crawled through 2012. By February, I could no longer work. I felt that I was putting both my occupational therapy patients and myself at risk should I continue. I struggled to concentrate, to function, to sleep, to complete basic activities of daily living. When my Doctor thought I had underlying chronic Lyme disease, the treatments he prescribed felt like they nearly killed me. Then came the first of a series of alternative medicine treatments. It was the Beam Ray Rife machine that triggered the daily tics, the seizure attacks that escalated into the worst hell I could ever imagine. The episodes wouldn’t be diagnosed as epilepsy but they were equally as devastating. It felt like my life as I knew it was over. Actually, it was.

If only I knew that I would become seriously ill just 4 years into my marriage with Steve, would I do it all over again? To me that is a rhetorical question. Who would choose the extreme stress of almost complete social isolation? This included separation from Steve’s wonderful adult children and family who hadn’t had enough time to get to know me from their homes out-of-state or out-of-country, let alone my own friends and family. Who would choose re-injury of chronic pain issues every day and every night when the involuntary, violent convulsive episodes would start about 10:00 pm every night and return upon wakening every morning? At one point I noted over 30 symptoms to my complicated, serious illness that baffled specialists in-state and out-of-state. Over the course of the next decade, over $100,000 of savings and income would be spent trying to find answers. Treatments would diminish the worst symptom but not remove it or the episodes would increase again after a few months of a reduction. It would take almost 9 years to find cranial nerve, especially trigeminal and vagus nerve roles related to a condition diagnosed as Autonomic Dysfunction. We found tools more recently to stop them after a period of time but not prevent them. The grief and frustration were crushing to both of us. Steve had support from his family and friends, work and church. My support circle caved in with each passing year. I made a few new friends online dealing with similar issues. I knew I wasn’t alone because of their friendship and prayers from them and believers who became distanced; the constant companionship of the Holy Spirit kept me alive and going most of all. He alone re-started my breathing hundreds of times . . . I now longer feared death but saw it as a type of relief should it come.

We simply cannot know what lies ahead of us in our little lives. The Bible tells us that man makes his plans but it is the Lord who orders his steps (Proverbs 16:9). The Bible tells us that He has plans for us, to prosper us and not to harm us, to give us a hope and a future (Jeremiah 29:11). The Bible tells us to trust in the Lord and not in our own understanding, that He will make our paths straight (Proverbs 3:5-6). The Bible tells us a story where He restored the years that the locusts had eaten (Joel 2:25). And so much more. When the months rolled into year after year after year of serious illness for me, when the convulsive episodes and tic attacks racked up into the thousands, when people close to me started to doubt their medical origin even when confirmed by tests and experts, when the money ran out for aggressive treatments, when the illness alluded three large research medical centers in the country and several specialists out-of-state . . . I hit terrible periods of despair. Then I planned my suicide in October of 2019. When I realized to follow-through on my plan would be to believe the lies of Satan himself as he smiled in my mind’s eye, I realized that I was being deceived. Death, like divorce, is not an answer but a new problem. Believe God’s word and promises instead. I chose to accept that I am simply too finite as a human being to fully grasp these Bible verses, God’s real plan for my life, what I cannot see, what my life is really about. I chose to follow Jesus.

All I have is here and now with you Gentle Reader. It’s not up to me to end the timeline. It’s not up to me to write the next chapter of the story of Just Julie Writes at Hope Beyond. My hope and future are in the hands of the Lord. I pray that my hands type as unto His grace, His redeeming power to overcome.

It is up to me to choose to enact a faith in an infinite God Who is beyond what I can see. He knows I have seen and endured a lot of horrible things in my life before I ever met Steve. What I could not even imagine before this past decade was what it would be like to go through it all with a man who loved me more deeply than I knew existed in life. He was often my Jesus with skin on. He is loyal and yet human, strong and tender, God-honoring and God-fearing, loving and still driven to pursue his own dreams too; Steve is my provider of all I would need in my earthly husband. I am truly blessed. We did reach a crisis point in our marriage twice during this nearly 10-year journey within our over 13 years together. We got through them and healed the pain of potentially losing each other. More intimacy grew between us as a result, along with trust. The spiritual battle that came along with each test melted away as unto the Lord. Only the Lord knows what those moments were really all about.

Only the Lord knows what all of the changes, the stress, the spiritual battles, the strife in our lives are really about. I’m sure that each of us would freak out if we really knew what the trials in our lives were really about. One day all will be revealed. For now tis better to lay down our swords and pick up His along with His shield of faith. Put on the entire armor of God while we’re at it. This life is not for wimps, I tell you. JJ

Walk softly in the moment

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Said goodbye to a group I started on Facebook that grew to well over 3,000 people, my Co-Admin and I helping them with mercury toxicity as best as we can. My leave-taking occurred over a period of weeks and ended yesterday. It was time to free up some energy for other projects. Still, you have meant so much to me.

Experiencing fewer serious convulsive episodes lately after embarking on aggressive treatment for systemic Candida albicans plus flares of herpes simplex, and herpes zoster. The ramp up was very difficult yet, coupled with another treatment for a chronic MARCONs infection in my sinuses, it appears the body burden of infection is going down. Along with it there are at least 2 days every week for the past 5 weeks without convulsive episodes or tics! Only one severe episode every 5 days! Having more moments of relative freedom means so much to me after 9 years trapped in a prison cell with fear-of-episodes: avoiding triggers seemingly present in every aspect of living. Thousands of convulsive episodes nearly destroyed my health, my life. Now the the beatings have lifted some.

Simple changes in the timing of compounded hormone creams coupled with specific pharmaceutical grade supplements to help regulate cortisol levels took about a month to affect my sleep-wake cycle. This all came together rather casually when my Family Doctor reviewed the treatments of my Integrative Medicine Doctor. Both of them contributed to a significant change and so did I. I ventured out to find yet another recommended supplement and braved taking it when literally hundreds of treatments in the past have resulted in disaster. The Lord guided me in tweaking the dosing. And now most nights I sleep at least 5 hours during the normal time of night. This means so much to Steve and me.

A quagmire of new dental issues furthered my belief that not much in the medical realm is simple for me anymore. A simple cavity took a total of 4 dental visits to resolve, 2 with conscious sedation and all with considerable suffering, serious side effects. The latter included another flare-up of shingles! But now the insurance coverage for ongoing treatment of HHV1 and HHV3 is better and I am tolerating the dosing most of the time. So what if I have to soak the dye off of the tablet so it doesn’t cause a headache. I digress. PTL, He helped me figure it out. After my mouth fully heals and I can return to regular wearing of my specialized dental appliance, I should be stable once again. No more pureed or chopped food. To be stable means a lot to me.

The diagnosis of Occipital Neuralgia dovetailed multiple cranial nerve issues (vagus, trigeminal, glossopharygeal) that result in convulsive episodes. This discovery has led to new treatment strategies that work for me. No, it’s not fun to sleep with an ice wrap around my head at night but if it largely prevents a seizure attack episode falling asleep then I WILL DO IT! Nerve block injections tomorrow have the possibility of confirming this dynamic. It means so much to me to have tools to help my symptoms, to lessen my suffering. Very sparing use of new medications has rescued me on my worst days. Over the past 5 months, it only took a failed visit to the Cleveland Clinic and four visits to the professionals at a local pain management clinic that actually listen to me to figure it all out. At long last, I’ve got tools that work to lessen pain! Less pain means fewer convulsive episodes. Who knew?

The difference between my self esteem getting bruised from chronic illness and graciously seeing the Lord’s hand in delivering me from the hardest parts of chronic illness often lies in the hands of nurses at various medical facilities. They run these places. When a nurse actually delivers care and not just a procedure or worse yet ABUSE, I can endure much. The nurse who shamed me, blamed me for things things at the infusion clinic yesterday that were not my responsibility was out of line. I wept once they pulled the curtain to start my IV fluids. I left there in a weakened state albeit made worse with the needle-stick pain of the Huber needle coming out of the infusa-port in my chest wall. I sat in an outer lobby and cried again before emotionally limping as I left the building to come home. I really hate this stuff. I don’t want to be there. Insurance changes then other problems required me to return to a hospital setting instead of continuing in home health. You have to do what they tell you to do much of the time no matter what it means to you.

We have come into a time of year that means the most to me. It’s springtime. The temperature outside is in the 50s and it’s the same to me as a warm sunny day if I can get dirt underneath my fingernails in a garden. Less severe illness symptoms parts of days a couple of days per week means that I can push myself to do more than my basic self care. And so I have. No one needs to counsel or push me to get up and get moving. If I feel better, activity follows. I don’t want to be sick anymore. I’ve learned a lot but never “got anything” out of being sick. I hate and hated being sick but it happened anyways. The Lord has seen me through it all and is leading me into some new projects. These activities stretch me greatly and increase my pain level temporarily. They also increase my interaction with other people, strengthen my broken body, stimulate my mental capacity, and add value to our home and hopefully the lives of others too. By the grace of God I have earned the title of Extension Master Gardner. By the grace of God he has called me to serve others with these abilities so I have chosen to step out in faith by hosting some community gardening classes and even repairs in our own landscape. Sometimes I have to take things an hour at a time. Steve helps, thankfully! I actually get to check things off of my To Do list! Praise the Lord!

We have no idea what tomorrow will bring nor how long it will stick around. When it’s bad news we all go through a process of questioning: why me? why now? What am I supposed to do to get rid of this or perhaps worse yet, deal with this? I submit to you that the only Person to ask these questions to is the Author of life, the Lord, Jesus Christ. He is the beginning and the end, all that the heart seeks to be fulfilled despite living in a fallen, satanic world. He has a plan and a purpose for each of our lives. Every detail matters and is ordained in His crafting of our days, the days of the entire world and its people. You matter. I matter. And that worth does not change based upon our circumstances, thoughts, or other people. No one wearing a badge can take away your ordained purpose on this earth, on this side of the grave. Even if you die, your life will have made an impact somewhere to someone. And if you believe in the sacrifice of Jesus Christ on the Cross, you will live on in paradise where everything is perfect, well, good, and beautiful. Thankfully we get glimpses of heaven here on earth, especially in the garden where His fingerprints color the fauna around us.

One of the most compelling truths I have learned enduring serious illness for nearly a decade is to walk softly when considering the hardest questions of life. Nothing is wasted in a life surrendered to the Lord, a life redeemed by the Lord. Everything will be alright in due time. We can bear way more than we think we can. We pray for the Lord to help us when we cannot see or trust, when the pain is too great. He will bless us. And further there is always something for which to be grateful. Even during a pandemic. Even during tyrannical events in society. Even when our relationships or health or finances suffer a seemingly fatal blow. We are not dead yet! We are also never alone. If we but walk softly as we consider the days of our lives then in due time, our precious Savior will reveal Himself to us. The seizure of our spirits will not last forever, Gentle Reader. One day we will know what it means to be truly free. JJ

Another Healthcare Faux Pas

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When I learned that there might be some pain relief for me if I went to a clinic that specifically focused on headaches, I was encouraged. I have some form of headache or migraine virtually every day. Pain lowers seizure threshold. Neurologists in this specialty have more strategies than typical anti-inflammatory and narcotic pain medications, over-the counter preparations, and the therapies we chronic folks go in and out of all the time, i.e. chiropractic care and physical therapy. I can rarely tolerate pain medication anymore and have used it sparingly my 30 years of chronic pain. Looked to me like there was something more to learn, some hope for a better quality of life, so I asked my Doctor for a referral to a headache clinic. What would I have to lose?

My dignity. Last Monday my dignity took a major hit at another major medical center. Here’s the raw footage from a message that I sent to a friend when I was still in shock.

Had a very odd, traumatic, and disappointing day at the headache clinic at the CC today. Gotta get this out. The MD Fellow with a couple months of experience listened to me, made a new HA diagnosis along with med ideas to try to manage them. This could raise the threshold for the convulsions, providing relief for both the episodes and HA pain. I have a HA every day and both HA and convulsions have been worse. Tweaked my diet recently and at least the HA came down enough to make the trip: 4 hours each way. The building was old and musty. It rained during half of each travel period. I had 2 hours of sleep Sunday night. I was ripe for an episode at some point; short tic attacks in the truck on the way out. Still was hopeful. The telehealth appts with the first 2 CC specialists 2 weeks paved the way for this appointment.

Then the young MD left to review my case with the staff MD; they both returned. We went in person so I could have a more comprehensive neuro exam. All the 2nd neurologist had me do was demo 5 simple range of motion exercises. A disastrous seizure attack ramped up within a minute! Thankfully I could blurt out to get Steve as she tried to coach me on breathing ex in a childlike way. I blurted out that I can’t breathe! She continued. I asked to lie down. The high velocity, repetitive, involuntary movements were injuring my neck n back. It’s terrifying and dangerous. SHE SAID NO! I could not believe my ears. Steve picked me up, my legs hanging, arms curled up, and put me on the exam table. I was able to get into my recovery position that protects my neck. Screams emerged that I cannot control. The pain seared my spine, head, extremities. Then they left. 4 times in this visit I asked to have the door closed (for privacy). 3x they said no so they could hear me if “anything happened.” Like what, I thought to myself. It was already happening. Steve stood nearby for my safety. I heard people walking by in the hallway. This is a HIPPA violation. (Correction: This actually violates their Patient Bill of Rights, posted on the CC website.)

Steve and I found ways to develop a plan. There were 3 violent episodes in total over an hour. The Med Asst came in once (as id’d by her voice, my eyes were pulled closed) and nurses after the 3rd round. I asked for the Doc. My tongue was thick and protruding out of my mouth, pulled to the right. My right arm dangled lifeless towards the floor; left arm curled and tucked in a flexion posture to my chest. This is mixed hemiparesis. But the young Doc had already left the building. The nurse said if it didn’t stop I was to go to the ER. How would I get there like that, I wondered, struggling to communicate and trying not to chew my tongue or trigger a rebound reaction. Finally I could ask Steve to turn out the lights. He put Prednisone in my mouth despite the snot and tears staining and stinging my face. I was able to ask for ice. Putting ice on the back of my neck broke the pain cycle worsening the episode. Like and overfilled balloon losing air, my body started to calm down. It took about 10 minutes.

The nice nurse had gotten a wheelchair. She figured I would be too tired to walk. I blurted out a thank you. I think she had left when I could tell Steve that I was WALKING OUT OF THERE under my own power. Any shred of dignity required it. I grieved so much on and off through this horror and trauma before I could finally sit up and stay up. Time to use the bathroom, wash my face, and get out of there. Soon I was gingerly walking out of there with all parts moving, albeit weakly. There was no one in the hallway. There was no one at their desk. We walked out into the dusk and rain.

Somehow during the first episode I was able to ask the young Doc to write down her recommendations for me. I’m glad I did. She hand wrote on my summary note only wrote 1 of 5 ideas she had for me. I was able to reconstruct the rest of it on our way home. The older Doc must have been the one to write a different, generic diagnosis. Only 1 recommendation was given and it was for a treatment program at CC that I already did at the Mayo Clinic. It made no lasting impact. Steve and I concurred that the older neurologist was of no benefit. He has seen this discounting behavior before. He said it’s why he jumped in to help me while the Doc did some chanting thing.

I’ll message the young Doc tomorrow via the MyChart online portal for her rec again. Hope she can do so for me. I went there for help with HA pain. I have no meds I can tolerate for pain when things get bad. The modalities help some. But with my chiro out with COVID, reg Doc/chiro rescheduling 60% of my appts due to his busy practice, difficulty getting to PT, and increased episodes, I need more tools to lower the pain threshold. The headache-specific tools could be a game-changer. Then I can go back to natural stuff. And be out of bed, able to function more again. Funny how I’m at the book of Job again as I continue to read through the Bible.

I spent the next 2 days largely bed-bound, struggling to function at all. The young Doc returned my message with the same diagnosis and recommendations as the older Doc but did add the name of the 2 classes of medications she had recommended. At least there was something new to pursue with my Family Doctor. I started an herbal remedy for headaches anyways and at day 5, the daily headache had already started to improve. But I still wanted to see their report. Turns out I was in for another shock when it became available 6 days later.

The Progress Note that got posted in my patient portal and I anticipate will be sent to my Family Doctor is a FABLE! The report lists so much false or inaccurate information that I wonder who they are talking about? Numerous tests were never completed but there are results listed for them! Below is my responses from the “Request for Amendment of protested Health Information” filed today in my patient portal on the CC website.

The Progress Note contains falsified information.  The following tests WERE NOT completed:

REVIEW OF SYSTEMS:  None of these questions were asked.  7 mm kidney stone, intractable back pain, arthritis, significant sleep disturbance with Mild Sleep Apnea denied or omitted.

PHYSICAL EXAM for rash (present on both legs), cardiovascular & lungs (no stethoscope exam), vascular (no checks).

CRANIAL NERVES:  No exam completed.  No sensory testing, venous checks.  My tongue protruded to right during the convulsive episode (in your office).

MOTOR EXAM:  No MMT completed of UE or LE.  Right UE hung from table during convulsive episode.

SENSATION:  No one touched me except for vitals.

CEREBELLAR:  Convulsed for total of 60 minutes.  No finger to nose, heel to shin, rapid alt movements completed.

REFLEXES:  All values are false.  No testing completed.  Neither Doctor saw me walk in the room nor had me do toe or tandem walk.

What does the current information say that you believe is inaccurate?

The only PHYSICAL EXAM that was completed was an upper extremity range of motion which was WNL, interview, and vitals.

Multiple false values need to be deleted.  We drove 4 hours each way to have a comprehensive neurological exam completed and all that was done was an interview, observation, and BUE AROM test.  No one touched me to do a physical exam of my heart, lungs, reflexes, cranial nerves, strength or other tests.  Neither Doctor completed the gait tests noted nor saw me ambulate in the room.  Neither Doctor reviewed my Headache Scores with me.  When the BUE AROM test triggered aura then speech changes, searing head/neck pain, tics then a convulsive episode, I struggled to ask to lie down.  Dr. K (the older Doctor who I finally got to see her name when it was stated on the PR) said “NO.” Whiplash re-injury followed from severe involuntary movements.  My husband picked me up and put me on the exam table in a position so I could brace my head from further injury.  Dr. K chanted to breathe deeply.  Sometime later my husband put 60 mg of Prednisone in my mouth.  I do not know when the Doctors left.  Later a nurse checked on me and brought ice for the back of my head/neck and the episode stopped completely within a minute thereafter.

We could have done this verbal exam by tele-health without the trauma of this visit, extensive travel, and false report.  My “After Visit Summary” includes the diagnosis of Chronic Nonintractable Headache, Unspecified Headache Type.  This diagnosis is not on the Progress Report that I anticipate is going to my family practice physician, Dr. J, for continuation of care.  Please add it as an addendum.

Sigh. Big sigh. I have no idea from where they got the physical exam results that are listed in the Progress Report. They are fabricated, false, wrong. The Request for Amendment of Protected Health Information can take 60 days to receive a reply. I looked up the Clinic’s HIPPA policy and Patient Bill of Rights and Responsibilities. Looks like my privacy concerns fit more the latter and that I would have to contact an outside agency to file a complaint. It’s too soon to consider such action. I’ll see what the Request yields. Not sure if I should contact the young Doctor or not. She was actually very professional and listened to me. At the Mayo Clinic, the “MD Fellow” residents are able to file their own report in addition to the supervising physician. At CC, only a report with Dr. K’s signature on it is filed beyond the Visit Summary you get walking out the door (that only contains a preliminary diagnosis, single statement of recommendation, and information I had provided to the patient portal). The gross inaccuracies on the Progress Report from CC renders it useless in my humble opinion.

We’ll see what my Family Doctor says. He is a brilliant diagnostician and loves to review special reports. He’s just too busy most of the time to dig into the differential diagnoses of my case sometimes. Looks like the Docs at CC were also so they made it up. Another healthcare faux pas for sure. Oy vey. JJ

The trials of discontent

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Perhaps the greatest challenge a follower of Jesus Christ must face in his or her walk with the Lord is how to handle the evil that is in our world. When it touches our own lives in the form of discontent, when things are not as we think they should be and we are unable to accept it, then we may be tempted to break fellowship with the Lord our God. He has ordained the length of our days, the vessel in which we live, and every detail of our lives whether good or bad. Recently it occurred to me that not accepting His will for my life is a sin that keeps me from any form of peace. And now I know from wence it came.

A particularly horrific convulsive episode about a week ago left me whimpering on our bed. The searing pain in my neck and broken frame notwithstanding, I wondered for the several thousandth time, “how can I endure this level of suffering Lord?” My Jesus had shown me many incredible things through the trials of battling serious illness; my Jesus was always right there with me when I called upon His throne of grace. But like the old song goes, “Is this all there is?” Is this all there is to my life when entire beautiful days upon days are spent suffering in bed?

The truth that we see is not all that there is to know or behold in this life. Only by faith in the Lord Jesus Christ do we come to understand what the fullness of life means. We will have both joy and sorrow. We confess our failings, surrender our will to the Lord, and receive the Holy Spirit, beginning our eternity right here in the midst of all the good and bad; He helps us endure all things for His glory. But I didn’t know all of this when I was 3 years old. All I knew is that a neighbor boy named Danny was babysitting us and molested me while I was taking a nap in my big girl bed. I knew where the pills were that my mother took. So at some point thereafter I crawled up onto the kitchen counter, opened the cabinet door, reached way up onto the top shelf, grabbed that bottle of pills and ate a bunch of them. The only other memory I have of the incident was feeling scared while lying on a gurney in a hospital. I must have been crying too because the images are unclear. I had to go to the bathroom. I asked if I could get up and go to the bathroom and a man said NO. I felt the warmth of the urine on my legs and underneath me as someone said something about pumping out my stomach. And then I was OUT.

In a single flash of a moment after that convulsive episode, I knew what the Lord was trying to tell me. Or at least I think I do! He was showing me that by taking those pills, even as a small child who knew she had been hurt badly by someone everyone trusted, I was trying to take away the pain and the life that God had allowed for me. My little mind could not bear what had happened to me. The reality that the ugliness of that scene was ordained by the same God who created me and crafted all of my days from beginning to this end was too much to understand. I would not have been old enough to say the words to my Mom or Dad describing what that boy had done to me nor felt safe doing so. My parents weren’t exactly touchy-feely type folks. Can a 3-year old feel shame? Dirty? Worthless? Overwhelmed? Traumatized? Terrorized? Surely! While I have known, grieved, and forgiven the players in this scene for a long time now, I didn’t know that my survival from that day forward in my own strength would be marred by discontent. Nothing in my life would be good enough, or so I thought, to make me truly happy or at peace EVER. The seeds of several of my character flaws were planted that afternoon. I know that it wasn’t my fault any of this happened. I was just a little kid. To survive abuse is actually a noble task and accomplishment. What IS my responsibility, however, is to figure out what to do with what happened to me, layer-by-layer as each level of understanding is revealed in my walk with the Lord over my lifetime. In due time we must all ask ourselves: Will I grow up damaged or will I heal and thrive? Fifty-seven years later, the wound from this particular scene finally healed completely.

I grew up in what you would call a “blue collar” family. My Grandfathers worked in their respective trades: my Dad’s father as an auto mechanic and my Mom’s father as a maintenance man/operator in the boiler room of an ice cream factory. My Dad got a job at the General Motors Tech Center as a non-degreed draftsman. Each of them were very skilled at their respective vocations. My Dad in particular, would end up redesigning slot car motors to make them among the fastest in the world and co-authored over 30 clutch-assembly patents with Borg Warner later in his life. Although each of them would earn a living wage to support his family such that their wives could stay home and raise the children, there was always an attitude that it was not enough. I have come to call this mindset a “scarcity” mentality. The adults in my family never seemed satisfied with the income or the lifestyle or the relationships to which they acquired. First it was my Mother’s Mom taking the last of her grocery money to purchase tickets in the Irish sweepstakes. If only she would win then she would be happy! I think she did win a time or two. I don’t think it ever changed much of anything though.

The harder part of this dynamic for me came from my parents, especially my Mom. “If only we could win the lottery” she would say, “then . . . .” fill in the blank with some material gain of some sort that she thought would solve our problems and bring happiness. Without realizing it, I adopted this mantra as well. It sure helped when my parents got divorced or when my Dad missed a visitation or when my Mom wouldn’t come home at night from her carousing adventures with Parents Without Partners. If we had a windfall of cash then it would solve all of our problems, right? This was back in the days before there was common knowledge that most people’s lives are not better when they win the lottery! Family relationships tank when relatives come calling for money and out-of-control personal spending often leaves the prize winner in debt not set for life! Sadly this mindset and experiences of abuse and trauma contributed to addictive behavior in my teenage and young adult years. What became my addiction of choice that I thought was my winning ticket out of my inner turmoil? Work-a-holism. I nearly drove myself into permanent injury working so hard at school, the early days of my career in healthcare, graduate school, and one relationship after another. By the grace of God, He showed me a better way when I learned about addictions when doing contract work at a large mental health hospital. My years continuing to seek answers ultimately led to a personal relationship with Jesus Christ. A new level of healing and a less frenzied pace of life began in my thirties.

That wasn’t the end of my discontent, however. Somehow I still looked more outside of myself than to the Cross for meaning, healing, self-worth, hope. A handwriting analysis in my youth said I was a very determined person. Well, yes, and that was not necessarily a good thingy! I sought counseling and studied God’s Word which did help me in many good ways. Yet like breaking in a wild colt, it still took repeated heavy tragedies from 2003 to 2007 to soften me for the biggest gift and the biggest trial that were yet to come. I am meeting you here after both of them: 1) marrying my Intended Beloved Steve and 2) enduring a serious illness that brought thousands of seizures virtually every day over 9 the past years. I have been grateful for the former.

Steve is an amazing man of God who loves me dearly as I do him. The serious illness not-so-much. I had never accepted the Convulsive Disorder or Dysautonomia or Dystonia or Functional Movement Disorder or Non-epileptic seizures or whatever you want to call it. What I came to realize this past week is that not accepting this illness is not a form of defeat. Rather, it’s not accepting that this is the Lord’s will for my life for my best good. It is the journey for me that will bring Him glory. And how am I handling it? I am denying His will for my life when I reject the pain and suffering that goes with the numerous blessings. Instead, I must trust that like all of the trials that have happened in my past, this illness serves a greater purpose. I may or may not ever really know what that purpose is. The episodes and medical complications may never stop. If I am to succeed at letting go of my discontentment with a traumatic event in my life at age 3 years old, I must also let go of the other thing that I hate in my life. Believing otherwise is believing a lie: a lie from the author of human suffering, sin, and death himself, Satan. No magical thinking (like a lottery mentality) is going to cover or remedy this lie. I MUST DENOUNCE my discontent, leaving it for my Lord to redeem.

How about if I repeat that another way:

No happiness or peace will come if I hold onto discontent over the Lord’s will in my life.

I knew in an instant, why that memory of me as a toddler came to me while grieving after another seizure. Both sorrows were and are part of my Lord’s Divine plan for my life. He will redeem my suffering one day and it will end. He will make all things new and good, and right; I will be whole. In the meantime, I am a steward of the experiences, people, places, and things He ordains for my life. My responsibility is to accept them with no expectations, no exceptions, no deal-making (“if only this . . . then that”), no holding back. So that night I let both sorrows go and wept deeply for a good long while.

Sometime later I shared my inner story of this incident with my beloved Stevers. He is warm and tender at these times as if to be my Jesus with skin-on. I am so blessed to be loved by this man after God’s own heart. His response? He marveled at how long abuse can affect the life of an abused person. Years. Decades. That a person can carry hurt his or her entire life because of the evil actions of someone who hurt them when they were little. I agreed. Yet for me, the hurt is never the same each time I get to revisit it. Each time I get to grieve some more. I get to heal some more. It takes what it takes. I get to see how the Lord uses even the ugly stuff to give me tools for coping and a gift of compassion for others. If I had not developed work-a-holism and that health challenge of hypoglycemia then I would have become an alcoholic. How do I know? My siblings and Mother were alcoholics, my Dad was mentally ill. One brother who overcame alcoholism struggled to find meaningful work then tragically had a stroke and was never able to function independently again up until he died earlier this year. He suffered with unspeakable pain and spasms every waking hour of his life. He had traded his bottles for cigarettes. What I am trying to say is that each of us had horrific wounds to overcome. Today I am the only one still here of my immediate family to write the stories. Oh Lord, may these words yield some goodness beyond the tales of sorrow for the goodness that is there too.

Because there is much redeeming value in our stories beyond the sorrows. Nothing is wasted Gentle Reader, in God’s economy of time and space. Letting go of the sin of discontent, perhaps after grieving its root-cause, is a work of the Holy Spirit in our lives. He will bring you to it and see you through it. Healing is complicated and can take a very long time to process. Be encouraged. I tell you as in the song of Peggy Lee, the BAD is not all there is to a fire or the circus of the circumstances in our lives or a long lost love! There’s even more to life than the happiness of a fleeting moment such as in a windfall or slow dance with your beloved. Just go to the Cross. There you will find a peace that transcends all understanding. The best gift of all is waiting there for you this day, this night. He promises. On this we can rely.

Will you? JJ