What do I long for?

That night walking along the dock, arm in arm, before dinner with friends that hot July summer. I had quickly changed my clothes in the truck on our way back from the airport to the restaurant, into something I later deemed too cutesy for a woman nearing her 6th decade of life. It didn’t matter that night . . .

Perhaps it was the same night of the day when we paddled our custom, tandem Huki outrigger canoe on the great Lake Winnebago after the EAA air show: the biggest in the nation. Sometimes you get to feel cool. Riding around with a 24-foot OC-2 on your roof is definitely one of those days, anytime, anywhere . . .

OC-2, outrigger canoe, River Bear Racing, Hawaiin boat, married couple on the water, lake kayaking, lake canoeing, tandem canoe

In the crispness of the salty air waifing all the way to the east side of Tampa, I recall our relaxed stroll through the sales lot of the RV park where we were staying. Lazy Days indeed. We dreamed about upgrading our Tin Can Ranch, a dream that would be realized just a couple of years later for reasons that were more puzzling than exciting. Even so, that night was magical with you. Were we even supposed to be out there? Kind of weird in a way to pick this memory when a walk along the Sunset Beach would have held so much more charm and majesty. Well we did that too another night . . .

I’ve rarely felt smaller yet more in awe as when you showed me around Palisades Reservoir along the most southeastern corner of Idaho that one could go. After we launched, there was no one around for probably miles except for the moose you had seen the day before! Would we see them crashing into the water from the woods this afternoon too? The water was as blue as you could ever find: crisp and clear and oh so refreshing as it sprayed off our carbon paddles moving that OC-2 to parts unknown. Your confidence as a competitive paddler calmed my fear of flipping over in a place where no one would ever see or hear us. Did we have all we needed for a fabulous adventure? I think so . . .

The laughter burst forth easily as we took turns zipping along Lake Wauwasee on the jet ski we rented for your birthday. Daniel and Rebekah took turns as we all did, knowing that your other adult children Christina and Patrick would have had a blast too if they could have been with us as well. But it was our friends Ed and Kinsey that would end up joining us later at The Frog Tavern when we ran into them near the end of our outing. Imagine that! It was such a wonderful day . . .

The thrill was palpable as we zoomed in your Dad’s MG along the coast of Solana Beach and beyond. Dang that engine was loud and the clutch barely held a gear! It wasn’t too much for you my lover of all things that fly through the air whether on land, sea, and now THE SKY! Your kids were still a little weirded-out by our recent wedding then extensive travel together from Indiana to California two months later. Eventually they chilled some. Eventually I came to understand how meaningful that trip really would become in opening up the stories of your life to me as we stayed in your parents’ home. Let’s ride in a convertible along Highway 1 again sometime soon . . .

Waiting on the tarmac of the Kendallville airport that cool evening held much anticipation as you completed the FAA exam for your Private Pilot license. I wanted to be the first to congratulate you on realizing your lifelong dream to fly! The wind sock and other funky towers whose purpose I still don’t understand faded from view as the night sky filled the viewfinder of my camera phone. And then you came in for a landing: just you, pilot-in-command! What a privilege it was and continues to be for me to witness the desires of your heart taking flight. No experiences I have had in my past years compare to the calling to get behind your man when he is being blessed by the Lord. I pray that I get to be in the cockpit with you again soon my love . . .

So this night, when I can hardly travel at all with you nor fly nor paddle nor lie in your arms lest the wretchedness of illness take over, I long for another adventure with you. Is it the enduring the tumultuous trials of our times and the stretching of our souls that must suffice for the awesome view of a mountain lake, a $100 hamburger by way of a bumpy flight in the RV12, or the crisp scent of a beckoning water body virtually anywhere? Do the sometimes demonic trials that test all we know about life and love and faith and time and space earn us a better day when we can live freely in the moment, hand in hand, without a care at all? Lord willing, this side of heaven?

I do long for you my love. I long for all the more that we can wander through together without the pains of this life the Lord has allowed which sidelines them, albeit for His purposes. Will you hang in there with me? Please don’t ever stop asking me to join you in your adventures for one day I may be able to say yes! And do cherish me tenderly as you go. I am hurting from the trials of late. This too shall pass with proper care and perhaps more time than either of us would like. You are my intended beloved not just the one with whom I am somehow stuck by some vows. I do respect you. And I do love you dearly.

What do I long for? I do believe, he is already here . . .

Heal the wound, Heal the heart

While I don’t claim to be an expert in medical wound care, I have seen enough nasty, smelly, screamingly painful open sores when I worked in healthcare to know that we can learn much from their process of healing. I submit to you that the stages of healing that occur when one’s body works to heal after an injury or surgery run parallel to other types of wounding that happens in life. Further, the risks for complications such as infection or swelling (aka edema) can be symbolic of the “secondary damage” that not only impedes the healing process in both but introduces entirely new problems that must be addressed as well. I have seen in my life that injury, damage, or wounding from various types of abusive behaviors have the same characteristics, the same impacts, the same risks for complications and the same potential for healing in due time as wound care management. These wounds can heal and the scar or scars fade if handled correctly. And while it all can take a little more time than we might like, the process can reveal wondrous truths and blessings as ordained by our Heavenly Father, our Lord and Savior Jesus Christ.

Heal the wound

Check this out from Wound Source:

The stages of wound healing are a complex and fragile process. Failure to progress in the stages of wound healing can lead to chronic wounds. Factors that lead up to chronic wounds are venous disease, infection, diabetes and metabolic deficiencies of the elderly. Careful wound care can speed up the stages of wound healing by keeping wounds moist, clean and protected from reinjury and infection.

Generally, remodeling begins about 21 days after an injury and can continue for a year or more. Even with cross-linking, healed wound areas continue to be weaker than uninjured skin, generally only having 80% of the tensile strength of unwounded skin.

This recovery assumes that the appropriate treatments and dressings are applied right away, any open wound is kept moist, naturally occurring inflammation is controlled, and

a new network of blood vessels must be constructed so that the granulation tissue can be healthy and receive sufficient oxygen and nutrients. 

Appropriate compression is applied with proper bandaging, elevation, and reduction of factors that can contribute to swelling. The presence of edema itself is a risk factor for new injuries and complicates the healing process tremendously when dealing with an open wound. According to the EO2 wound care technology company, whatever the reason for the edema, it WILL impair healing through several mechanisms. All of these factors need to be managed well for processes such as granulation and epithelialization to occur. These steps continue at various levels even when the surface wound has closed and things are looking better. The entire amazing physiological process is a testimony to us of the magnificence created by God in our human frame. We can overcome our injuries, our vulnerability to re-injury and complications, whilst moving towards recovery and leaving minimal scarring behind. And even the worst scars do fade in due time.

Heal the heart

Recently I was reflecting on the impact of abusive behavior at various times in my life. The impact was devastating and took on virtually ALL of the characteristics of the injury and damage of a medical wound. Both types of wounds require a careful healing process. In the distant past I defined the abusive behavior that I experienced as that which violated my rights as a human being and professionals labeled as sexual, physical, ritualistic, or verbal abuse. I don’t wish to get caught up in the semantics or seriousness of each type here; all are profoundly impactful.

An individual KNOWS when another person has crossed a line that should never have been crossed and profound damage has occurred even if it takes days, weeks, months, or years to fully realize it. The recipient feels traumatized and goes through a tender, complex grieving and recovery process to heal. For example, the difference between an expression of emotion and abusive behavior can be like a person who uses 1) mean verbiage versus 2) repeated verbal hammering in a tone that purposefully tears down the victim who is yelling “STOP! STOP!” A simple apology may not be enough for the beaten puppy of a person to get past the incident, particularly when the behavior has been repeated. The relationship between the two parties has changed. The recipient is injured, damaged, and wounded kind of like a 3rd degree burn to the soul. Special care and bandaging are needed for as long as it takes for the wound to heal.

Some of my own experiences of abusive behavior happened before I became a Christian: a born-again believer in Jesus Christ. Some of them happened afterwards. Gratefully as unto the Lord, most have healed completely while a few have left their scars. There is nothing unusual about that. My purpose here not to belabor my own experiences but to share with my brothers and sisters in Christ what is and what is not abusive behavior then a model for how a person overcomes it. The Biblical Counseling Coalition provides some definitions as follows.

Abuse entails physical violence (Acts 16:19), threats of physical violence (Eph. 6:9), persecution (Matt. 5:44), sexual mistreatment (Judg. 19:25), reviling (Luke 6:28; 1 Pet. 2:23), speaking evil (James 4:11), or being under the misused power of another person or group of people (Gen. 16:6; 1 Sam. 2:16; Ezra 5:12).

Check the link that I provided above for a more detailed discussion on this topic. Focus on the Family describes emotional and verbal abuse specifically and at more length on their website HERE. They add that

Wounds that typically accompany emotional, physical and sexual abuse must not be ignored. Both men and women inflict verbal abuse, but women tend to be more often on the receiving end of this destructive behaviour. What may seem innocent and infrequent at first can escalate.

All forms of abuse follow a pattern that, left unchecked, will only increase over time. Injuries from verbal and emotional abuse can run deep and leave lasting scars. Many emotionally and verbally abused people reason that, because there are no bruises or broken bones, their abuse must not be serious. But it is. Fortunately, support and resources are readily available to guide individuals into safe, loving relationships. In their well-received book Boundaries, Drs. Henry Cloud and John Townsend state that, “Our pain motivates us to act.” If pain motivates you to act against emotional and verbal abuse, then listen and act.

We can easily see the many parallels between the topics of wound care and recovery from abusive behavior. The pain of each motivates us to act, to fix the situation. What appears on the surface may not reveal all of the layers of injury, damage, wounding that must heal to withstand the testing of the tissues or trials that inevitably follow in life. Choosing to do the work of repairing any remaining wounds of my own experiences required 1) heeding the Lord’s unveiling of my eyes that what actually occurred was damaging and 2) following the leading of the Holy Spirit to move towards restoration. Part of heeding this ongoing process includes writing this blog today. In the past my care also included significant Christian counseling, support groups, Christian books, and the like. Forgiveness, seasoning in my walk with the Lord, restoration of relationships, compassion for others, and spiritual discernment are among the gifts, the fruit for doing the work of recovery.

So what are some specific parallels between healing a physical wound and recovering from abusive behavior?

  • Stop the source of injury. In wound care they call this hemostasis where the body begins to clot your blood to stop the bleeding. In personal relationships this may include setting some ground rules, some boundaries, or simply separating from the other person for a time. The thrombus or clot must hold lest it become dislodged and result in a more bleeding, a more serious injury. Similarly, the two parties in conflict must, in my humble opinion, work to stop attacking one another. Yes, the recipient has responsibility here too.
  • Inflammation in wound healing controls bleeding through swelling and helps prevent infection by bringing fluids/nutrients to the site. Inflammatory words are exceedingly difficult to control when emotions are running high in an abusive situation. There can be fallout and setbacks while the two parties seek to figure out the best way forward, if each are committed to actually go forward together. Bringing in a mutually agreed upon 3rd party is much-needed medicine at this time to help tone things down. The effect of inflammation may hurt for an unknown period of time and look as ugly as an open sore desperately trying to turn a corner towards healing. Proper “bandaging” and self care for emotional wounds must begin in a responsible manner.
  • Wounds are kept moist and hydrated as new cells called collagen and its matrix begin to form. In contrast, the two parties that are able to work together to address the woundedness can do simple things to care for the other parts of the relationship, their shared responsibilities. The darkness still needs to be addressed and treated correctly and what this looks like may change as the two go forward. The antagonist in the story must stop the abusive behavior and create safety in which the protagonist can flourish. New “medicines,” new habits, and new means of communication are needed. Figuring this out takes time. It may actually may be the party that was hurt the most who lovingly leads the two of them through the process of forgiveness and restoration to a better relationship.
  • An even longer phase of wound healing is that of maturation. Find your own parallels in this summary from Wound Source:

During the maturation phase, collagen is aligned along tension lines and water is reabsorbed so the collagen fibers can lie closer together and cross-link. Cross-linking of collagen reduces scar thickness and also makes the skin area of the wound stronger. 

Recognize that, in the words of Bay Care Health, the healing process will vary among individuals and will depend largely on the cause and severity of the wound. I submit to you that all types of wounds are the same in this regard. And as we noted above, the new collagen fibers are vulnerable to re-injury but their re-formation makes the area of the wound even stronger. This process in wound care may take up to a year. We know that while the body never really forgets an injury and neither does the mind, its power over us can change significantly. The things that happen in our past become our story, our testimony of the Lord’s amazing grace in our lives.

When I was working as an Occupational Therapist, we told our patients in rehabilitation all the time when they got discouraged that recovery is usually a jagged line with lots of ups and downs. They had to work through their fears of getting re-injured, having delays due to complications or a re-occurrence of a disease process, and grieve the losses associated with an extended hospitalization and rehabilitation process. Like my older friend Wanda used to remind me in a 12-step support group, “you gotta feel it to heal it.” Range of motion exercises after a shoulder surgery are excruciatingly painful and so are flashbacks of abusive behavior. It’s like the surgery or incident is happening all over again. But it’s not. Eventually the body and the heart starts to heal with ongoing and proper care. Lord willing, most folks do get better. We come to realize that setbacks, hurts or new injuries are just one part of living in a fallen world with fellow sinners just like us. We learn so much in the process. Thank goodness the Lord Jesus Christ helps us to overcome it all!

Interpersonal relationships seem to me to go through the same wound-healing process as restoration comes, as trust is earned: it “takes what it takes” to get there. The prevention of pressure wounds in particular includes daily skin checks. This entails looking for areas of redness over bony areas of the body and making immediate changes to reduce the pressure, nourish the tissues. Could we say that better care of our personal relationships with a better daily maintenance plan can help raise the threshold over which unwanted behavior spills over? I do believe so. Are we following our home exercise programs, our Spirit-led care plans? I could go on but you probably get my point by now.

Gentle Reader, there’s so much to say on these topics and I am not an expert on either one. I am a fellow sojourner to those who have experienced both and I have seen the power of the Lord in healing all kinds of devastation. Let our salty tears be the saline, the healing salve that washes us clean indeed. May the cross-linking of our entanglements in this life give way to the redeeming grace of our risen Lord Who restores us through and through. For His glory! Amen. JJ

1 Corinthians 2:9, No eye has seen nor ear has heard, healing wounds

Bouncing along a bumpy road

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

Whatever it takes?

Ten years ago I was Divinely selected to endure an often horrific chronic illness. I trust that the Lord ordains this plan for my life for my highest good and perhaps something good for the people around me. Certainly there was much bad for me and for the people around me, especially my husband of 3 years at the time, Steve. A decade later I am not exactly sure where Steve is on things at the moment but for me my mindset remains: WHATEVER IT TAKES!!! But maybe not in the way that you might think it does.

We have endured much, Steve and I. The stress level was so high during the remediation of our home for mold in 2013 that one night we nearly breached the fatal blow of divorce. I stated that “I would not hurt me to love you.” We just stared at each other. I had been living in a hotel at the time which was during the 76 days I was away from home. We were hemorrhaging money trying to figure out what to do and each of us had different ideas that barely overlapped. My Doctor had prescribed both traditional and alternative medicine treatments, one of the latter of which had made my condition much worse only we didn’t know that at the time. Steve was travelling between the house and the hotel while his adult daughter chose to stay in the house. With full time work and other obligations ongoing for Steve, his stress level was visible, tangible. And then the work on our house was done and I was able to come home. But unfortunately, the daily violent convulsive episodes quickly ramped up again. We were exasperated. The hardwood floors in our home are still nice though.

Ten years of researching, doctoring, extensive medical testing and treatments, genetic coaching, physical rehabilitation, trips to major medical centers, supportive counseling, pharmaceutical grade supplements, science-based modalities, specialized and traditional dental interventions, and finally pain management have improved my quality of life. My worst symptom, the convulsive episodes, have diminished; there’s about one bad episode every 5 days now; tic attacks most days with at least one day per week without one at all. Score! Yay God! I still have to avoid most strong noxious sensory stimuli such as sustained loud noises of a certain pitch and some types of mold that grow inside buildings, homes. We practice a version of extreme avoidance to make our home (and travel trailer when on the road) as safe for me as possible. The ongoing re-testing and treatments are still very expensive, limiting our budget for other projects and interests. The ongoing whacks of illness are still very costly in terms of social engagements and recreation. I still sit home alone a lot more than before I got sick with a serious illness and yet the isolation is breaking somewhat as I learn to navigate some improvements in functioning. It’s a natural process. I feel better and do more. I feel sick and do less. Such is the life I have come to understand.

Then one Friday night came with a major setback. I had recently pursued pain management services and was prescribed a few interventions largely for neck and headache pain that have reduced my symptoms up to 50%. After experiencing headaches so bad for the past year (and earlier in this illness) that I couldn’t get out of bed, THIS IS HUGE!!! The progress is tenuous however. Just like any chiropractic care or physical therapy: the next seizure attack episode wrenches my neck so badly that the gains can diminish or even disappear. This happened again with the surgical nerve blocks about 6 weeks prior. Dang. The violent convulsive episode 2 nights after writing this blog was so bad that it erased all gains from the Pain Management clinic completely! Not only was I horrified by the violence and scope of the episode, I have a new whiplash, a new back injury with which to contend. I AM CRUSHED!!! It’s spring for crying out loud. I’m an Extension Master Gardener who uses her better days to get outside in the dirt or serve as Editor of our county Extension’s newsletter. It’s a real struggle at times but it’s my “job” right now. I still rarely get out for anything social or worship-oriented, however. The challenge has always been to figure out how I was going to do anything in the post-ictal/recovery phase of the daily episodes when I can’t even figure out how to get out of bed? I had a setback like this on Friday; it was that bad all day yesterday.

For some reason yet to be determined, Steve was 42 minutes late picking me up at the local grocery store. I had a minor tic episode about 3 hours earlier and was fatigued from the recently diagnosed dehydration and other abnormal labs, troubling symptoms. IV fluids and more labs were scheduled the next week. We really needed groceries so I talked with Steve about how I could get the shopping done and best manage my depleted energy levels. The plan was for him to drive me to the store and pick me up later. But for some reason our timing got way off. I was left standing in an exceedingly moldy entryway of the store, not realizing what was going on, exhausted plus trying to stay calm and manage the thirst and need to go to the bathroom that were increasing. I had forgotten my phone. He knew that. I felt vulnerable standing there as I was getting sicker, worried that I would have an episode in public. People came and went and I just stood there, checking for Steve in our truck about 18 times. Maybe he forgot me? I was panicking. Somehow I exchanged eye contact with a very friendly-looking woman leaving the store with her own full grocery cart and figured out how to say the words needed to ask her to use her cell phone. (Forgetting my phone should have been another clue that I should not have gone to the store for and hour and a half of shopping. Maybe I should have done the remote shopping service we had used in the past? I just didn’t want to use up my Saturday dealing with 2 weeks worth of a grocery order while my husband was away at a sporting event. I wanted a day-off too. But you don’t get a day off when battling a serious illness, even when in the slow-mo phase of what appears to be recovery.) I made the call on her phone. Steve arrived 24 minutes later. I raced back into the store to use the bathroom while he loaded the groceries into the truck.

My physical discomfort came down a notch as I walked from the store back out into the cool spring air to the truck. I hoped it was reviving me some for the chores to follow at home of dealing with the groceries and making something for us to eat. That’s not what was to be, however. My mind was clearing enough for it to register that I had been in a moldy foyer of the grocery store too long and that the continuous opening-and-closing of the automatic doors did not protect me from a major mold hit. I quickly became aware that I was in the pre-ictal phase: the ramp-up to a major convulsive event. My gait got stiffer as I honed in on the door of the truck just wanting to avoid tripping and falling in the darkness. Steve was holding the door open for me. I could not speak. I believe I thanked him. Maybe I didn’t.

What followed can only be described as a waking hell-on-earth. I don’t know why I have to be awake for these violent convulsive episodes but that is what happens for me. I would rather pass out and deal with a bump on my head than know the horror of the wretchedness of my limbs shaking in various combinations that ramps up to spontaneous vocalizations of terror, writhing like a child with severe cerebral palsy, then hanging like a limp doll until the next wave hits. Whiplash, repetitive motion injury, flare of painful peripheral neuropathy in my fingers and toes, back pain, gasps for air, inability to speak, loss of motor control (aka hemiparesis), and increased sensitivity to all 5 senses that can intensify the episode, filled the next hour or so. My body extended so stongly, it pushed me between the front seats and into the back passenger area. Finally I could sit in the front passenger area and Steve fastened my seat belt for me. I couldn’t use my hands that were involuntarily drawn up to my chest in a flexion posture. He drove us home as I continued to seize. I remember Steve opening the car door once we were in our driveway and asking me what he could do, what did I need? Somehow I blurted out that the frozen food, now thawed, needed to go in the freezer. My eyes were open, my eyes pulled closed then they were open again. My left arm was already useless then my right arm fell lifeless off my lap and into the space near the seat belt and out the open door of the truck. The cool spring air blew over me and I was simultaneously chilled, re-awakened, and glad for my choice to wear flannel-lined jeans. The jeans kept me warm. Steve left my door open as he unpacked the groceries. The tears flowed and my face became a mess with snot and tears. It all burned on the skin of my face: another hypersensitivity anomaly. My mind moved in slow-motion, desperately trying to assess the situation, this medical crisis, from every possible angle. Most importantly I begged the question in my mind: how the hell do I make this nightmare stop! I prayed.

Many minutes passed. I couldn’t hold up my head any longer. It fell forward creating even more of a neck strain and worry about how I was going to continue to breathe let alone deal with the increased pain that would surely follow. I now have pain medications to take for specific symptoms but my liver enzymes are elevated. I have been cautious to only take a drug when absolutely necessary. The only “alternative” method that works is icing so I do that every night. But in that moment I couldn’t do anything but try to keep breathing and hope Steve didn’t accidentally close the door on my ankle dangling off the side of the floor board, out the door. I prayed some more. I always do in these moments, pleading for the Lord’s mercy. As during many times before, I asked for wisdom even on how to wipe my nose to stop the burning feeling on my upper lip. Maybe I could twist my torso in an attempt to reach my arm to wipe my face with my sleeve? I thought it was the last bastion of function left in my battered frame. Big mistake. The episode ramped up to a whole new level of hell as my torso extended, twisted and writhed to the left, sliding me off the backrest of the passenger’s seat AGAIN and into the space between the front seats. My head hung overstretched into the backside of the driver’s seat. I couldn’t stop it. Any of it. This new neck injury further crushed my spirits. And all I could do was hold on and try to breathe some more . . .

For those of you trying to do an armchair diagnostic workup at this point in my story, please stop. Thank you for your care and concern. I’ve seen the best medical providers in the country and completed all of their recommendations. And here I am. My own research led by the Lord and all I have learned from these professionals has brought me the most effective improvements overall. Please just pray for me and Steve. The Lord knows.

Eventually my beaten frame settled back into the front passenger’s seat and I was able to open my eyes, to breathe somewhat freely again albeit labored. I searched my frame and shifted my torso for signs of life in my limbs. Could I move my arms and legs yet? At this point probably 45 minutes had passed since the episode had begun. Steve had asked twice if I wanted him to carry me into the house. I couldn’t reply. My thoughts went elsewhere. I was aware of what was happening and the circumstances leading up to them yet not sure enough of the reason why Steve was late; I didn’t want him touching me just yet. I needed him but didn’t want his help. I was upset at so many levels and my remaining shred of personal dignity required me to find my own way to get into the house. I reviewed the steps over and over in my mind of how to ambulate into the garage, what I could use for support, how to disrobe for a shower, then how to wash off any mold residue on me into the cleansing comfort of a long, warm shower. By the grace of God I was able to advance my left leg by dragging it as I pulled myself out of the truck, limped into the garage then house, drag my dead leg down the hall, and get into the shower. I was so very weak. The pain was excruciating throughout my beaten frame. What is going on? I thought I was getting better? I had endured several mold hits in April in Florida and yes, had some minor episodes but NOTHING LIKE THIS ONE!!! Perhaps my seizure threshold had gone way down with the repeated exposures during that trip. WTF? This far down? I don’t get it. Eventually I lost it and could not hold back my angst any longer. No matter how many incidents like this we endure, each one is difficult for both of us and traumatizing for me. Please pray for us. This serious illness is really, really hard for both of us to live with, to try to live around.

Another thing is as clear for me that Friday as it was in 2013: I will endure whatever it takes to fulfill the purpose the Lord has for my life, no matter the level of suffering or loss, no matter what it takes. Each major “hit” like the one shared above challenges everything I know about life and death, love and hate, Divine Providence vs self-determination, the Lord’s provision, the economy of time in our finite lifetimes, and the question about where the heck did my serenity go if it can leave so quickly? At times of crisis I am ready to run away. Then wonder where would I go? We take ourselves with us when we run away, which includes virtually all of our problems with us wherever we land. It’s like the yellow felt banner painted in purple letters in the office of a counselor I knew in 1983 that read, “Bloom where you are planted.” Funny to recall this now. That was long before I would ever get into gardening. But even back then it was decades into living through the tragic hardships of my childhood and young adulthood. I did try to run away from my problems at home after I finished college. Turns out about a year and one-half later after I moved out of State I realized that I had taken most of them with me! The dysfunctional dynamics of my biological family were reflected in the relationships that filled my “new life” 300 miles away. How is that even possible? So much seemingly had changed. I took the geographical cure, right? Wrong. That’s just the way it works when you “do what it takes” to try to improve your life without first surrendering those dreams to the Lord, Jesus Christ. He knows the desires of your heart and has a Diving plan for our lives. Flash forward about 4 decades and He has fulfilled more of those dreams for me than I could have ever imagined. My life is better overall than I ever dreamed could be. I didn’t know Jesus back then. I know Jesus now. And life is still really hard at times.

To do whatever it takes to stop wretched convulsive episodes is not the most important task in the overall view of my life. Friday night I was in survival mode. I/we did whatever we had to do to get through it and will do the same to deal with the aftermath. Perhaps you get what survival mode is like? Sometimes we must focus on the task directly in front of us and simply HOLD ON. We have to make the hard decisions to cut the cancer out, end the abusive relationship, quit the job that puts our professional license in jeopardy, sacrifice resources usually spent on pleasures for medication or emergency food supplies instead, and move out of state to find yourself, to find Jesus. When those decisions are rendered unto the Lord, He will bless them and ultimately use them for His glory. We will be fulfilled beyond our wildest dreams. The pain of the suffering will diminish while the lasting joy of walking everyday with the Lord magnifies. And when we need to grieve, crash on our bed of sickness, the Lord Himself will meet us there in a tender embrace. He did that for me today at 3:30 in the morning on the day I described above. I had almost built that wall between Steve and I in my heart that we faced in 2013. I was ready to run away again or worse. The pain of the incident that Friday, the trauma of what had happened AGAIN, the loss of nearly 2 days afterwards trying to recover/manage the physical and emotional hurt, the burden of tasks not completed, and the lack of clarity of what to do from there are all just too much to bear alone. But I do know from past experience that I can separate my feelings from my faith. My faith is stronger. My trust in the Lord has been built over many tragedies that I have been entrusted to endure. Yes, it’s a kind of stewardship. What will I do with what has been ordained for my life, the good, the bad, and the ugly? Perhaps I will know someday.

With weakness I shall go forth. With a once baby faith that now roars like a lion I will trust that the Lord will lead me, give me what I need to live. It’s only in His strength that I have gotten through thousands of episodes just like the one described many times at Hope Beyond; any one of them could have killed me but didn’t. I survived. And having said that Gentle Reader, I will thrive from this day forward as unto the Lord. It just looks and feels a little different than it may look and feel for someone else, perhaps for you. Keep looking to the face of Jesus, little Julie. Keep looking at Him. You too Gentle Reader. We can do this if we but follow Him. It will all make sense one day. He promised. JJ

P.S. Steve and I worked things out. It was hard. We did it. Some better days followed and for that we are grateful. We are grateful for so very much . . .

St. George's Island, Florida, travelling, sick, chronic illness, better days, convulsion disorder
Getting out of the truck a few weeks later on my own. A better day indeed at St. George’s Island, Florida!

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