How do you keep the music playing in your life? The kind that gives meaning to the days, warmth to the nights, zest to ordinary moments, flow to the blood in your veins?
The answer will be as individual as us all. Your passions, my loves, their mission, his one thing, her “can’t live without” until life changes, that is. Then when we find something new or even reminiscent of what has gone before, we can get excited all over again. Life is just like that, eh?
I thought I knew what to do in relationships then realized that I have only known a part of what it was like. There’s always the other person’s perspective. Then there’s the erosion as memory fades or doubt enters in or something else altogether. Then one party moves away. It could be death. It could be a parting of ways. It could be the presence of someone new that pushes out the old or questions you, him, her. And if by chance the whole encounter or encounters or memory or memories become tainted by emotion then everything changes again. We may crumble into a pile of tears. We may strike up a rage within us, swearing to never live that way again. We may never want to love again for to do so would risk the pain of loss: too great a price to pay. Or so we say. Chances are good that we probably WILL love again. Or love something instead of a someone. To love is to be alive, really. And I submit to you that we must never ever give up.
I’m not sure why the relatively sudden passing of an Uncle is bringing up so many different thoughts and emotions. My Uncle Larry, my Mom’s brother in-law, was well loved by so many and is now gone. I was the first in my extended family of cousins to meet him as I was the oldest grandchild in both of my parent’s families. At age 5, I was the flower girl in the wedding of my Mom’s sister Shirley, to the man who would become my Uncle Larry. As the years went on I would have painful memories with him along with many good ones too. Swimming in his parent’s in-ground pool was simply the best. But most of the better memories have come in more recent years. I am older now. I can now say that I am glad I got to live all of these moments; I can see now that even the more painful ones were used by God to teach me things, toughen me, humble me, and bring me to the altar of forgiveness. Letting my Uncle Larry go means releasing everything from our relationship as family in addition to the varied emotions that pulled me around for too many years. The goodness in the mix is more important now and will be ones with which will go forward in my life.
So I will focus on the goodness. I cannot say the same for my immediate family. My younger brother is now gone. My youngest and other brother is now gone. My Mother is now gone. My Father is now gone. Their stories with Larry are long gone with the passing of all of them. Although I have had many brushes with death myself, looks like I am living on to tell at least one of the stories here. And so I shall.
It was probably the mid 1970s. My Mom had picked up her pictures from the local drug store that developed them at a time when to do so would have been a great luxury for us. Polaroid photos along with the negatives came back in a divided envelope, printed with inserts naming all of the ways you could reprint your keepsakes for a fee. We never did. We just placed the 3″ x 5″ images in a shoe box for to put them in an album was too much work for a single Mom. Finding the old shoe boxes was like opening up a treasure chest in the bottom of our Mom’s closet, filled with memories of Christmas, birthdays, graduation parties, and more. The golden nugget for me was the collection from that Thanksgiving dinner at Grandpa and Grandma R’s house.
The house was so cloudy with cigarette smoke that family had to wash the walls once per year to remove the yellow streaks and stains that would build up on them. We never knew my Mom’s parents’ home any differently. My Mom smoked at home right at the kitchen table or when washing dishes at the sink. She placed an ashtray nearby with a third by the side of her bed. I don’t recall my Dad smoking but he would have been long gone somewhere else for decades after their divorce and before this: one of the last times we celebrated Thanksgiving at my Grandparents’ home. Glass or aluminum ashtrays graced my Grandparents’ black-and-white Formica table as well; a kind of family tradition of sorts. Sad, really. I retreated to the family room after all the dishes were done to get away from the fresh billows of smoke and noise. I don’t recall anyone else smoking, just my Grandparents and my Mom. With only so many places to go in that 3 bedroom ranch, there were still cousins and aunts and uncles everywhere. Eventually as our family grew, we would move our holiday dinners to My Uncle Larry and Aunt Shirley’s home for Thanksgiving; Christmas was always at our house.
My Uncle Larry must have either borrowed my Mom’s camera to take pictures or gave her that one photo of me some weeks later. I do recall him taking it. I didn’t want to look at him directly. Why would he be taking a picture just of me anyways with so many other kids around? I was wearing my brown corduroy blazer that I had made myself on my Mom’s Singer sewing machine. Sewing was the only way for me to get really nice clothing for special occasions. The rest usually came as hand-me-downs from Uncle Larry’s more affluent family. I guess they were just trying to help us out, my Mom being a divorced woman raising three kids on her own. No child support. At least from my Father, that is.
Friends had told me that I was pretty but I never had a boyfriend. Someone nominated me for homecoming queen and I declined to participate fully. My self-esteem had been destroyed by abusive events earlier in my childhood. Self-worth would come for me from what I could do, make, achieve, or accomplish so any recognition that I would accept would be the ones coming from those activities. This way of being actually became a type of addiction, becoming a “human doing” instead of a “human being” and yet it helped me survive the first three decades of my life. Then I found Jesus Christ and a measure of healing with a self worth that came from being a daughter of the King: my Heavenly Father and perfect source of love and acceptance, recognition and more. That is another story!
In the picture I had my hand over the right side of my face. Perhaps I was leaning on my cheek with my elbow on the arm of that recliner chair in which my Grandfather would take naps when we were little. The room was dimly lit as it was nighttime by the time we were done with dinner and dessert, dishes and too many bottles of Town Club pop. In that picture I saw for the first time in my life, a beautiful young woman. I had never seen her that way before. Evidently my Uncle Larry saw something too, worth capturing forever on film. I’m sure that I looked at the negative from which the photo was printed. Even from that strip of plastic, when held up to the light, I would be able to see myself for the first time from a perspective separate from my own inner struggles. Emotion had no say. There it was back-lit by the blue walls stained with time and their own stories. On Thanksgiving as a teenager, I was not lost but captured forever in a lovely pose amidst the mayhem of a simple family gathering. Gee, what if I had moved my hand, my Mother would ask. Knock it off Mom I would later reply silently. The composition was as it should be. And I was beautiful in it.
Thank you Uncle Larry for this memory that I will cherish forever. Almost 30 years later I found a love relationship that makes me feel like the day I saw the young woman in that photograph. You met my Steve a few times during fellowship with other family members and, I believe, have extended your approval of him, and of me both. You know that I have found my Intended Beloved at last. Steve is an engineer, a family man, car guy, and really smart, just like you were. Maybe you know that I have finally found a way to play the music intended for my life, with all of its passions that transcend the minutia of the days. He is the one, after my Lord and Savior Jesus Christ, who makes my heart sing!
Gentle Reader, my prayer for you is that you may re-capture a memory today in a beautiful way. And then run with it to your heart’s content! JJ
Ecclesiastes 3:11 — The New International Version (NIV)
11 He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.
Such is the stuff of this life to have so many longings remain, even for those who have found rest in Jesus Christ. It must be a function of the human condition. We can’t fathom the mysteries of our God nor what it really means to live forever in His presence. Or find the answers to a thousand questions that begin with the word WHY? There are just too many unanswered questions that at times it makes me for one, ask how then am I to live?
Experiencing a great loss revs up this engine even more. One of the worst in life is that posed by divorce. You not only lose a spouse but many of the people, places, and things associated with him/her and the life you once lived. Life drastically changes. When the divorce comes as a consequence of infidelity followed by him or her leaving your life completely, well then you simply have no choice but to slog your way through the destruction, the grief, the changes in so many relationships, and a heart left bleeding for all to see. The tearing takes years for the woundedness to heal over. Does it ever really heal over? For some, perhaps. Or somewhat. Certainly many new people, places, and things fill some of the void: our Lord can become a Heavenly Husband to the woman who earnestly seeks Him. We learn a new way of living as unto the Lord.
Thankfully, I didn’t have children in the mix. This fact is bittersweet, however, as it became a desire of my heart to not become old and have missed the joy of having a family of my own. After years of pursuing a career, I did want a family after all. I was not given this opportunity. The Lord allowed circumstances that closed that door for me and it was painful. Then there were the changes in other meaningful relationships grown through 16 years of marriage. In due time, many of them would be ripped away from me as well. I kept in touch with some of my former spouse’s family as best I could over the phone lines and hundreds of miles between us. Eventually my former spouse’s Stepmother passed away and my Sister-in-law’s gate-keeping of my relationships to other family members led to a breakdown that I simply couldn’t overcome. She was the bridge to them and she severed the bridge. The heartache of their loss was palpable for many years. There simply was no place for my love for them, for my sorrow at their loss to go.
These feelings of loss were especially hard when Sharon’s youngest son died tragically. No one bothered to tell me. I found out about his death online from a third party. No one cared that I loved him too, that I needed a place to grieve, to share in the experience of losing a loved one. And tonight I found out that her and my brother-in-law’s remaining, oldest son died tragically last year. He was hit by a drunk driver and died as a consequence of his injuries. This is just so very awful. It hurts! It hurts in a place that I cannot even explain. Why does it hurt so much when I haven’t seen any of these people for nearly 20 years? I guess that when you choose to love someone and they die, it just hurts no matter how much time has passed. And it brings up any remaining fragments associated with the whole mess of divorce too. I don’t think these types of pain ever really go away completely. Sure, it’s less and much healing has taken place for me. The scars do remain though.
So to you Nathaniel and Jeremy, I extend my own tribute to each of you. Nate: you were such a tender-hearted kid that struggled to find your own identity under the shadow of your older brother. In time you discovered your artistic talents that far exceeded his, gifted by the Lord. I don’t quite understand your drug addiction but I do understand that it is really hard to live well with the pressures that life blasts at us. I am sad that your faith did not carry you through to victory over your struggles. I am glad that you have left a legacy of incredible art work that lives on, literally, in the tattooed images of your clients near and far. And your daughter Isabella is beautiful.
Jeremy: you were a young man with clear ideals about the world, a young wife and beautiful son so early in your adulthood. I don’t quite understand why it all didn’t work out for you, that you had to run off to the opposite coast to find a place in life to finally call home. I am glad that you found it with the fellowship of your brother Nate, that you both landed in the same area, the same industry that was meaningful to you. Thank you and your brother for showing an interest in my music when I played guitar during that one visit to your childhood home. Flash forward a couple of decades and your death is rather shocking to me. Both of you are now gone! How can this be? Did each of you know the Lord before you left your earthly home? Will I get to see you again in the heavenly realm where joy and the colors of the Master Artist paint eternity with with glorious goodness, music beyond compare?
Sharon and Max: thank you. You welcomed me into your family with friendship and fun every time Craig and I got to visit your home in the mountains of West Virginia. I learned so much from each of you simply by the way you lived and worked and lived out our shared faith in the Lord, Jesus Christ. I admired your creativity, ingenuity, industriousness, and positivity Sharon. I appreciated the technical help that you gave me with my speaking business long before we all had computer and internet skills: you were on top of it all! Your home was a bed and breakfast no less and when we visited we were treated to the best hospitality in the South! Thank you. At some level I do understand why you couldn’t talk freely with me when your brother/my ex-husband Craig had to leave my marriage. I just didn’t expect you to cut me off so suddenly too.
My ex-husband’s Dad, Ken, had already passed away from abdominal cancer before Craig’s affair and our divorce. His second wife, Eleanor, died after a bad fall in her beautiful home where she too had graciously hosted many of our visits to the Pittsburgh area over the years. You became a voice of reason in my life when I needed an older, wiser woman who had also been scorned as a relatively young wife herself. Thank you for listening to me, for trying to guide me through such a confusing time for all of us. I really loved your daughters, Cindy and Laura. You probably don’t know that I asked Craig for us to be considered as their caregivers in the event of your passing but he said no. Their developmental disabilities were a lot to handle for sure. I was trained in such things as an occupational therapist. They loved life: decorating for every single holiday, visiting with everyone, church on Sunday, and working at the sheltered worship with their friends. I never got to say goodbye to them. And now Cindy is gone as well. How is Laura doing? I often wonder. I may never know this side of heaven. Gratefully, I know I will see all of you again one fine day!
We long to see a loved one for that is how Christ’s love for us manifests in this life. We love others because He first loved us; we learn about love in this life as infants from our parents, our families. IN time we come to know that God is love itself, that He has set this beautiful gift into our heart, our mind, our very soul when He created us, when we came to be. Our longing for our lost loved ones is part of our longing for our Savior Who covers all. The only way that we can deeply connect with others in this most tenderest of ways is to come to know the love of Jesus Christ. Being together with other believers in Jesus Christ fulfills this longing; being in fellowship with the Lord through His Word and prayer fulfills this longing. We come to understand that the connection to our Lord is the most perfect relationship of them all: never failing, never ending, ever present, and perfectly above them all. We are always with Him, He is always with us such that we are never alone again when we call upon Jesus Christ as our Lord and Savior. Our longing thus transcends our earthly relationships in ways too wonderful to explain. We can come to trust that the Lord has taken care of these mysteries of life. We come to trust as in Ecclesiastes 3:11 that He has made all things beautiful in His time.
All things beautiful. These are people that I have had the privilege to know and love. My Lord will redeem them one day for my good, for His glory. He promises. O.k., I get it now. Thank you Lord. Thank you for Nathaniel, Jeremy, Max, Sharon, Ken, Eleanor, Cindy, Laura, their brother Michael, and yes even Craig. You gave me so much through them. I see how my longing is satisfied in You. I don’t understand it. I do believe it.
Gentle Reader: maybe you too?
JJ
Steve and Julie moving on at the Groovy Plants Ranch in 2019
She lifted her head and barked out that ferocious alarm that let anyone who came near, especially those in brown UPS trucks, not to mess with her or her people within. And within two hours, she was gone.
The ad on Craig’s List was for a free German shepherd dog. My husband said that German shepherds were a great breed for a pet dog but I was a little skeptical. Maybe afraid is a better word. I had witnessed the torture of a German shepherd and was further traumatized by the behavior of one in heat when I was still a kid. Flash forward to bites by a Rottweiler and an Akita as an adult, the latter sending me to the Emergency Room for a tetanus shot, and you could say I wasn’t a big fan of big dogs. I still always loved dogs. The gerbils that me and my brothers had as kids didn’t satisfy my longing for a real furry friend. That’s all you get when your Mom is a single parent and I do understand. Flash forward over 4 decades and off to a town an hour’s drive south of us Steve and I went to pick up Elle. What a great decision!
Elle was timid and small, tied to a tree when we arrived to the address out in the country. “Are you sure she is going to be o.k.?” I asked Steve as the owner pointed to her and simply said, “Take her.” “She’ll be fine,” reassured Steve and he was right. Within about the first 20 minutes of the drive home, the approximately 5-month old German shepherd puppy went from scared to picking her head up and exploring the new life ahead of her. The first few days are a blur to me now. She was born outside so gratefully we never had to house-train her. What a bonus! We got her checked out then spayed according to the guidance of our new Vet. I remember fondly cuddling Elle’s neck in her slumbered state from the pain medication after the procedure. That posture of her tucking her head down to receive my affection close-in would be our special thingy throughout her life. What a special bond we had!
A couple of moments stand out to me the most over the course of the next 13 years or so. The first was when we learned a little more about who our dog really was. Steve and I were hiking at a local Acres Land Trust park when he decided to let Elle off her leash for a bit. Before long Elle was racing from point to point between us along the trail, leaping over downed logs and sliding many feet in the leaves covering the path as she zoomed one way then back the other. If you’ve ever heard of large canines getting a case of the ZOOMIES then this is exactly what happened. We laughed so hard! It might have been on this same outing that we learned something unique about German shepherds. We were walking along the trail when a couple of deer crossed our paths, up along a ridge about 100 feet ahead of us. As soon as Elle saw them, her pace slowed as she put herself between us facing the “threat.” Well we didn’t know that the deer were a threat but to Elle they must have been so! We stopped in amazement to watch both the deer scamper away and our dog keep a close eye on them until they were out of sight. Some very detailed sniffs followed by our fuzzy protector when we got up to the line where the deer had crossed our path. Good dog!
There was the time when we tried to get Elle to ride in our Hobie Oasis kayak to no avail. She preferred swimming in the water, any water, alongside our outrigger canoe and especially when there was a tennis ball to chase from the ball chucker! Retrieving the ball launched to the end of our property was her favorite thing, over and over and over again! Or maybe it was chasing after the radio-controlled car or airplane? She raced around the courtyard in front of our home, hoping to get a bite of the rubber tires of the RC car Steve had bought to enjoy with his son, Daniel. The trick was to grab the car before Elle pounced on it as if it was some kind of live prey to be devoured! Noooooo! The same was true with the RC airplane my husband expertly flew in the open and pond areas behind our home. Even though the plane was at least 50 feet up in the air, Elle ran and ran and ran after it, nearly crushing it when the battery wore out and the foam glider touched down for a landing. The race was on to see who could get to it first with our Pup racing in for the kill on the grass strip of our backyard! As Elle got older, her chasing of the plane was interrupted by stopping to take a dump or a swim, or a sniff, or otherwise rest, before charging off again with her nose in the air tracking the plane. We loved every minute of it and so did she!
Then there were the tragic days that I spent battling my serious illness while Elle slept softly on the floor across from the bed, in front of the tub in the Master bathroom. She wasn’t what you would call an affectionate dog yet one who would definitely seek out hefty scratches around the ears when we came home. When one of us came home from an errand or work, the other would send Elle out to the car to be the first greeting. She learned quickly not to jump up, instead how to nuzzle her way past the open car door to the driver’s seat to welcome either of us home. I loved that. But it was a different story when I was sick in bed. Was she just watching and waiting to make sure I was o.k.? Or frightened by the screams of pain and seizing that erupted virtually every single night as I writhed in the bed in front of her?
For years the convulsive episodes met me every morning for about 30 minutes as I awakened. I had to lie in bed like a victim succumbing to a beating before I became functional enough to attempt to use the bathroom. One particular day, early in the afternoon, I simply could not get out of bed. My head pounded from the daily headache, body hurt so badly, ears were ringing, and I simply could not think straight enough to get things to be any different. Trying to drink some water or even the breakfast that I had prepared and placed bedside the night before was beyond my ability to accomplish. Those times were especially sorrowful. So I called over to Elle. She seemed very confused when I invited her up onto the bed, next to me. She wasn’t allowed on the bed nor on any furniture. “What is this?” she must have wondered. It took a few tries and some coaxing at a time when she clearly was able to jump up into the back of a truck and onto most furniture. I guided her to lie down next to me and there we stayed for a long time. Her warmth comforted me in a way that nothing else could possibly have come close. I needed my Puppers and she was there for me.
As the years went by, Steve and I got to take our Elle along as we traveled to many different places. She’s was an excellent traveler and went west with us a few years back, to many United States Canoe Association events to cheer Steve at his paddling races, and to Florida about ten times. She just hunkered down behind the passenger seat and off we went on one adventure or another. She never had an accident unless very sick. Her loyalty to us, to the way things should be, to her role as protector, a lover of most kids (unless you were a rascally boy big or small) was precious. She was my Elle-Beast, Puppers, Pups, and Elle: all names to which she would respond as quickly as Steve’s clap of his hands. He was her Alpha dog; she did put up with me and was obedient most of the time with a little extra encouragment . . . And treats of course!
I really wouldn’t have had it any other way. At least today. Today I’ll say that she was a perfect dog, a perfect pet. They all are after they are gone. So go squeeze your furry friend for me today, Gentle Reader. I’m sure I would love your pet as much as our Elle. It’s just the way it should be. Unless you are a UPS driver, of course! Then y’all better watch out! JJ
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 . . .
Getting out of the truck a few weeks later on my own. A better day indeed at St. George’s Island, Florida!
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.
Jesus is for the Wounded 
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