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 . . .
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 . . .
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 . . .
Just when you think you have figured something out, it’s really maddening to realize that there is more to know and you simply are clueless!
Hi, my name is Julie and I am the reluctant writer behind this blog after I got sick on October 11, 2011 and never recovered. I started my journey here online in August of 2012 after reading the blogs of 2 acquaintances. Journaling had been a life-long practice of mine, beginning with a diary that I wrote as a girl. The cover was shiny and flowery in white, pinks and reds. It had a little flap over the edge of the pages that I could lock with a tiny key. That still wasn’t enough to keep out my brother, Mike, to my horror! I don’t recall what I wrote but I do recall that he teased me mercilessly just the same. After that I got better at hiding my private things.
Flash forward many dozen years and the trend these days is to pour your heart out in a blog to the watchful eyes of the world. Just when you think that no one really cares about your stubbed toe or smashed fender, you realize that some stealth follower from another part of the world relates and responds to you in kind. I find it a kinda special occurrence and a reminder of our shared humanity. Still there are some topics better left untouched and facts left unsaid of course!
Be careful in sharing good news. If you are disabled, the government might use your day of reprieve as evidence against you that your life is restored when clearly it is not. That examiner probably won’t read the hundreds of other blog entries that describe some personal hell of one type or another. Like the convulsive episode I had this afternoon that yielded only after a prescription intervention, followed by a 5-hour nap. Or the second seizure attack a couple of hours later that yielded only after another type of remedy that actually worked this time. Thank the Lord that my beloved was home and willing to help me. I am grateful. And it all came just hours after helping our local Park while sitting here alone through the night to update their website: a good thingy!
If you happen to have dysfunctional family members or friends reading your blog then there might be entirely different consequences to complaining about blah, blah, blah over and over again. To this person I say well then don’t read my blog or (limited) Facebook posts honey! How about minding your own business a little more? Isn’t keeping a positive attitude, getting up in the morning, saving enough money in the bank for emergencies, and the like hard enough to manage these days than to meddle in someone else’s daily drama too? Do you really think I would fake this hell for self aggrandizement? I am not that kind of a sick puppy lady! You’ve got it all backwards. I’d rather remain anonymous or conversely, receive recognition for an admirable accomplishment. Like raising a rank as a Master Gardener largely from publishing our county’s newsletter in the middle of the night. Or volunteering in a public garden despite the heat exhaustion that came alongside many of the hours out there. And it all came on the hundreds of days each year when I did not have to crash back into bed, unable to function normally. Got it?
So where does a thyroid biopsy to rule out cancer fit into this muddied scenario? Will having major surgery thereafter legitimize my enduring serious illness and the varying opinions of persons on the sidelines cheering at times or throwing barbs at others? Nope. Others simply give witness to your life for the parts that he or she can see, to the extent that he or she can step outside of his or her own story. And none of us can do that fully. The peeps who truly love you will come closer to a sense of understanding. That is a gift for sure. However, it is only in a personal relationship with the Lord, Jesus Christ, in a life surrendered to Him that you will feel completely validated, loved, understood, accepted, and forgiven. He created you and ordains all that you are, what happens, when your life begins, and when your life will end. All for a purpose greater than anyone else will ever know. Lord willing, He will grant you insight into some of your life’s meaning along the journey and be merciful. He loves you so!
I’m not going to lie. Everything from what other people have thought and will think about me to questioning the Lord’s plan for my life is smeared across a messy collection of hundreds of blogs over these 8 years of chronic illness. Will it be cancer on top of everything else? Cancer: the one diagnosis that suddenly legitimizes one’s fears and suffering and need for compassion? So what. This stuff could really mess with my head. But what is really going on inside my mind? Not that much really. I feel like my Jesus is simply carrying me through it all. I feel numb inside and out. Often my thoughts are blank. When the tears come they are shallow, like a reservoir running dry after years of siphoning off for this trauma or that one. There’s not much left in my fuel tank. With no catharsis left for my angst, one might wonder who or what will nourish me now?
The answer would have to be the Lord Himself. Hold me please. I hereby place my journals, my blog, my illness, my life in your lap. Cover the Gentle Readers out there with your loving care too. Send forth your angels and Holy Spirit to care for, to guide us all. This is a tough world to live in these days. The suffering of your saints is great. We need you NOW!