If only I knew

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

Stand Up, Finish, and Win!

Recently a gal came into my life who has a major vocal talent.  I love the full alto robustness of her singing voice and the special emphasis she can put just about anywhere in a song to make a verse, an ending phrase come alive.  Very few musicians can go way beyond the sheet music and take you with them every note of the way . . . as if you are sharing in all of the emotion and beauty pouring out of the Creator’s expression manifest before you.  I love moments like this.  I love listening to her sing.  Her music gives me goose bumps now and always has done so.

I had the privilege of performing and competing in the top choir at my high school for all of my three years there.  Our teacher, Mr. Herr, was an accomplished tenor and pianist who occasionally shared his talent with us when singing the male solos; this included part of Handel’s Messiah one particular Christmas.  Before the concert he took a bus load of us teenagers to an old Catholic cathedral in downtown Detroit to sing the choral sections of the work from the balcony as the giant pipe organ accompanied us at full volume.  I will never forget that sound!  Our voices lifted high as if to touch the vaulted ceilings painted with Biblical scenes that I would not really understand for another decade.  My tender frame shook with the majesty, the magnificence of the moment when all the harmonies blended together in perfection.  The entire church swelled with the sound of music.  What a great experience to carry us through our concert at school shortly thereafter.  Well done Mr. Herr!

A fellow choir student told me early in my senior year that the only reason that I made the Chorale was my ability to sight-read written music.  The comment was a slam for sure.  So my talent wasn’t good enough but somehow my ability to read music made up the difference?  I didn’t understand but still was crushed.  Regardless, I made every early morning rehearsal, class session, and concert throughout the school year.  My mom sewed my blue maxi skirt and plaid outfit herself that all of the girls had to have made for the concerts.  And she did make it to the concerts, thankfully.  She made a point of telling me, however, that I could do better if I would just open my mouth more when I was singing.  Geez.  It’s a wonder I made it through my senior year of Chorale after all of that nonsense.

My interest in singing changed as I went off to college with my 3/4-sized classical guitar alongside me.  My experience got me two “easy  A’s” in beginner piano and guitar classes for creative arts requirements but little else.  Playing popular songs and sing-a-longs diminished from gatherings at the beach with girlfriends (who didn’t mind when the music always seemed to bring the guys around with a harmonica or their curiosity!) to sing-a-longs with groups of patients at various psychiatric hospitals in which I worked as an occupational therapist years later.  Within a decade I had practically stopped everything altogether and my skills, even my voice, eroded.  More recently the serious illness I have been battling has changed my breath volume and vocal cords such that my voice crackles when singing worship songs “in church.”  Although I will still crank the stereo and give it a go occasionally when the Barbara Streisand CD just happens to get turned up really loudly when my hubby is away!  No, no, ain’t gonna rain on my pa–rade!

So I do have a bit of an ear for quality and musicianship which brings me to the point of this discussion:  when a person DOES have a major talent I believe it is a gift from the Lord to be shared openly for His glory.  It really bugs me that my new friend has received “pukey” comments from non-talented, envious people around her.  I hope she can let them go.  We come to faith in Christ and are given spiritual gifts to be used for the Lord’s glory, often showcasing talents or even growing abilities already present in the life of the believer.  Whether we use our giftedness directly in ministry or just to inspire others as unto the Lord, I believe that we are to let that goodness shine!

Matthew 5:14-16New International Version (NIV)

14 “You are the light of the world. A town built on a hill cannot be hidden. 15 Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. 16 In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.

Especially today for all of us who have a creative ability that stands out from the crowd, my prayer would be that we would stand up, finish the performance out in front of the spaces we are given and win glory for the One Who has entrusted it to our care.  Delight in-and-develop our talent, have fun with it, and don’t let the pukeys, the naysayers get us down.  Going forth with boldness and confidence may just bring each of us the desires of our hearts which is a good thingy, eh?  The Lord may have placed those dreams there, waiting for us to take the next steps He will lead us to and through.  Oh how He loves us so . . . which reminds me of a song . . .

Do you see me?

I shook for almost 3 hours in that clinic recliner chair after a treatment that was supposed to help me.  Why did the nurse wait to answer the call light when I finally figured out what I needed to do?

treatment, recliner, hospital, bark a lounger, adjustable, IV infusion

I couldn’t speak properly but had to go to the bathroom greatly, knowing it would require transport via wheelchair and considerable physical assistance.  Why do I have to risk the episode worsening as I attempt to blurt it all out and even help operate the dang chair?

My left arm and leg were too weak and unstable as they seized with the rest of me so pivoting on a leg opposite the grab bar was the only way to land on the toilet dontcha know?  Why do I have to keep repeating that initiation of speech or movement makes the convulsions worse then be forced in a situation to have to do both anyways?

Each jolt repeated hundreds of times that night made the headache spike while wrenching my neck, spine, low back but alas I could do nothing to stop it or change its course.  Why did not voiding alleviate the symptoms like it had so many times before?

The infusions of fluids were supposed to help me treat the dysautonomia they said and address the dehydration but instead pushed me deeper into an exacerbation of my worst symptoms.  Why did not both doctors return my calls about my care that week, that day?

My beloved rescued me, drove me home, and helped me start the decontamination procedures to minimize the influence of exposures that could make the episode persist.  I feared falling in the shower after mumbling that I thought I could do it myself after he left.  Why do these heartaches keep happening to us?

I am still so very sick a year post IV antibiotics, genetic coaching, IV and compounded nutritional treatments, testing and treatments beyond that most experts would ever comprehend.  Why am I still at this level of strife FIVE YEARS down the road with no money for a big new direction, a possible cure?

The symptoms concerning me most recently are the ones where my cognition becomes dulled.  Why . . .  How in the world will we figure this out if my mind goes dim now?

I place this need to know “why” at the foot of my Lord’s cross who crafted this journey for me and my beloved for this time in our lives.  Thank you Jesus for Steve’s love.  I surrender my questions, my suffering, the thorns in my flesh, and the weakening of my mind to Your mighty hand with trust o’ God of the universe Who reigns!  Whether the battle is in the heavenlies or in my heart, my flesh, I let it all go to you now and ask for your covering my Jesus Christ.

God’s Word captures the submission of Job to the Lord in His time of suffering:

25 I know that my redeemer lives,
    and that in the end he will stand on the earth.
26 And after my skin has been destroyed,
    yet in my flesh I will see God;
27 I myself will see him
    with my own eyes—I, and not another. (Job 19)

“I know that you can do all things;
    no purpose of yours can be thwarted.
You asked, ‘Who is this that obscures my plans without knowledge?’
    Surely I spoke of things I did not understand,
    things too wonderful for me to know.

“You said, ‘Listen now, and I will speak;
    I will question you,
    and you shall answer me.’
My ears had heard of you
    but now my eyes have seen you.
Therefore I despise myself
    and repent in dust and ashes.” (Job 42)

Me too.  I trust that You always see me.  I will trust in you.  JJ