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!

When Garden Art Comes Home

Garden Art Comes Home, Part 1

By AMG Julie

Little did I know when Bethany wrote her colorful article on Garden Art in the June issue of Across the Fence (publication of the Master Gardeners of Allen County, Indiana, of which I am Editor) that I would soon receive an unexpected gift of my own!

About 5 years ago I decided to send a letter to the owner of my childhood home.  There was a unique piece of garden art in the backyard placed there over a dozen years ago by my now deceased Mom.  Is it still there?  If it is and you find that you no longer want it, would you kindly let me know?  I didn’t hear anything and never drove by the house during that time to see if it was still there, visible from the street.  Life went on until I got a surprise phone call on Friday, June 5, 2020.

I found your letter in the back of a bathroom cabinet when I was remodeling a few months ago.  I have the metal piece sitting outside against the house in the backyard if you want it.  I figured it would be meaningful to someone.  Give me a call if you do . . . 

I was in shock!  Holy cow!  Mark J had removed the garden gate from the garden “hill”  on the side of the house, concrete and all, and had it neatly secured with pavers against the red bricks of the old house.  I talked to my husband (always up for a driving adventure), thought about it overnight.  And then I got really excited!  I called Mark on Saturday and said YES!  We’ll come get it!

My childhood home is in Warren, Michigan.  I had moved away in 1983 after college to the Chicagoland area then again north of Fort Wayne in 2007.  Favorite plants made the journey here as well.  But I never would have expected that this prized possession of the original garden master in my life would come home too.  I called my brother right away and had some fun reminiscing about our garden projects with our mother over the years.  I sent him photos of the garden gate on Saturday when Mark forwarded them to me.  Plans were coming together to drive up to Michigan on Sunday to pick up our new found treasure and have a quick visit with my brother and his family as well. 

The visit never happened.  Or at least not yet.  Twenty-six minutes before Mike would have received the photos that I sent by text, he went into a medical crisis that would end his life.  He never saw the photos.  We did not drive to Michigan that weekend.  I never saw my brother alive again . . .

The meaningfulness of this experience and simple piece of garden art is now greater than ever before.  Mike made his gateway to heaven the very day after our Mom’s garden gate came back into our lives.  When this time of mourning has passed, my beloved and I will make our way to Michigan for a Memorial Service and retrieval of a memorable artifact from my personal heritage.  It’s a little thing in the scheme of life yet I’ll bet that I’m not the only one out there with meaningful touch points in his or her garden beds that reflect your own stories as well.

I’d love to hear them.  JJ

It wasn’t meant to be

happy place, home, where the heart is, house, Christian, in the arms of Jesus
I placed a special welcome from her favorite store across the country in her room. Did she notice?

Maybe I did too much in my own strength, albeit waning and waxing until the day came.

Maybe instead it was obedience to the Lord that so many details were honored in anticipation of a good result, a finishing well.

Maybe the one that did not get cared for along the way was my own flesh and blood, although I really tried . . .

Maybe our need for firmness and clarity covered my love for her.

Maybe now that I am purging everything I can to clear my mind, my Lord will let me know what happened with this caregiver thingy gone awry.

Maybe there simply was no way this arrangement could succeed no matter how hard we tried.

Maybe there will be restoration one day, maybe not.

For today, I still grieve.

JJ

A time for grieving

Just can’t believe it didn’t work out.  Months of preparation in every way you can imagine and more.

Having trouble moving forward with the next event on the horizon.  Feels like trying to divert a barge in narrow waters.

Body is weak and riddled with pain from increased sickness and episodes for having tried this course.  Not sure how to make it go away really.

Slowly getting the house and our belongings back in order but not sure if I will finish in time.  Sad.

Money hemorrhaged out the door, the window, never to be seen again.  And she doesn’t care, neither do they.

Dealing with noxious symptoms like increased bug bites just plain irritates feeble  attempts to move forward.

Yet life goes on and meals need to be made, mountains of laundry finished with running here and there.

Can’t even get close to my beloved for a hug due to sequelae of this nasty condition called CIRS, MCS, TMJ, oy vey?

I feel so alone.  Lord, please hold me this night and let me know it will be alright.  I am just so very sad.  JJ

Psalm 73

What would suit her best?

That funny bush with the orange berries

That I found tucked in a nursery corner

Was her birthday gift many decades ago

And became another treasure of uniqueness, much like that of her own.

Or the specimen discovered from the zoo

When she found the groundskeeper

And pleaded to give her a cutting

To grow with her collection of rare finds and vagabond species too.

Perhaps the devil’s tongue would be it

That bloomed in the closet each Winter

With a stink much worse than her smokes

And a tropical canopy outside in summer:  uniquely placed in the Midwest.

Surely she would be planted on the hill

Where the orange pavers from Woodstock days

Used to mark the side door to the home

Laden with so many memories and metal trash cans covering some of them too.

Oh I’ll bet she’s still out there somewhere

For her ashes got sprinkled into the earth

Forever mixed with the fruit of her hands

And beautiful gardens, a spa, some whimsy, all in squared borders of suburban fare.

Oh mom, how I miss you this day

As I tend to my own soil and dig

Preparing for Spring flowers and food

Adding amendments, turning it over again until everything crumbles just right.

One plant in particular we share

From your garden and mine:

Those “bee bush” perennial sedum

That you made me edge around in the hot summer sun by back-breaking hand!

Oh how you would love

To see me hail a sharpened spade

Defining my borders so clean with

Just one more bed added most years ’cause it’s also a passion for me borne from you.

Maybe the climbing Baffin rose

I will dedicate to you, Rose Anne:

A rambler, a bit wild yet beautiful

Yes this you shall be in my garden scrapbook come alive where you and me will always meet.

JJ

William Baffin, roses, fuscia, pink, red, climbing, vines, fence, garden
Fuscia William Baffin Climbing Roses