Full-time I used to serve others in my healthcare profession and now I can barely get a meal to my husband on a daily basis. My reserves for giving are diminished but not gone, or so he says.
Each night and morning I poured over my caseload, looking for the best ways to make the most of each patient’s time in occupational therapy. Shall I bring Sally a 2-pound weight that I picked up at Walmart or load up adaptive equipment for a better education and training session? Now I’m lucky if a couple of times per year, I can drop off a gift to a friend after one of my medical appointments. Or ride an exercise bike for 5 minutes in the middle of the night.
Sending a card for each birthday and gift for close family has shifted from 1) before his or her special date to 2) days or weeks afterwards. We apologize. It’s the thought that counts, right?
Then I send a PM (or is it DM?) to a friend via social media to ask how she is doing when I really need to pour out my own heart on how wretched I feel, the new symptoms and diagnoses that get added to my pile. Aren’t you tired of my tears Lord?
But enough of my sorry lot. Giving to others in my own strength will never balance the angst of my days. Pitching the good against the opposite is a mental exercise at best that risks the tasks being done for the wrong reasons; they barely even measure on the MET scale of physical activity anyways. What’s the point? My weak bones need resistive exercise as do my muscles that are softening by the day. Both my mind and my frame need REAL exercise. The kind that stretches me, tears down and re-builds muscle fibers for measurable strength. The kind that transcends a weary heart. But how is this possible? Gee. Looks like I need a refresher here on how this really works.
If I can only do a little then that little bit needs to be pretty enough. If I am to do anything significant then my strength must come from a source outside myself. I don’t have it. The Lord does! If He leads me through the Holy Spirit to these acts of grace then I trust that He will provide whatever is necessary to finish the task. This is true even if it stretches me beyond what I think I can do. His power is infinite! And if I can keep my eyes on my Jesus no matter the horror of my suffering then I know I will be stronger somewhere down the road than I ever could have imagined. Seeing our Lord’s power in our lives is how we grow our faith. Moving towards Him as He leads makes it so, makes us resilient as we go. And the more we follow His lead in His power, like a weak muscle trained over time, we will shine for His glory not ours. It’s really better that way anyways.
Perhaps the greatest challenge a follower of Jesus Christ must face in his or her walk with the Lord is how to handle the evil that is in our world. When it touches our own lives in the form of discontent, when things are not as we think they should be and we are unable to accept it, then we may be tempted to break fellowship with the Lord our God. He has ordained the length of our days, the vessel in which we live, and every detail of our lives whether good or bad. Recently it occurred to me that not accepting His will for my life is a sin that keeps me from any form of peace. And now I know from wence it came.
A particularly horrific convulsive episode about a week ago left me whimpering on our bed. The searing pain in my neck and broken frame notwithstanding, I wondered for the several thousandth time, “how can I endure this level of suffering Lord?” My Jesus had shown me many incredible things through the trials of battling serious illness; my Jesus was always right there with me when I called upon His throne of grace. But like the old song goes, “Is this all there is?” Is this all there is to my life when entire beautiful days upon days are spent suffering in bed?
The truth that we see is not all that there is to know or behold in this life. Only by faith in the Lord Jesus Christ do we come to understand what the fullness of life means. We will have both joy and sorrow. We confess our failings, surrender our will to the Lord, and receive the Holy Spirit, beginning our eternity right here in the midst of all the good and bad; He helps us endure all things for His glory. But I didn’t know all of this when I was 3 years old. All I knew is that a neighbor boy named Danny was babysitting us and molested me while I was taking a nap in my big girl bed. I knew where the pills were that my mother took. So at some point thereafter I crawled up onto the kitchen counter, opened the cabinet door, reached way up onto the top shelf, grabbed that bottle of pills and ate a bunch of them. The only other memory I have of the incident was feeling scared while lying on a gurney in a hospital. I must have been crying too because the images are unclear. I had to go to the bathroom. I asked if I could get up and go to the bathroom and a man said NO. I felt the warmth of the urine on my legs and underneath me as someone said something about pumping out my stomach. And then I was OUT.
In a single flash of a moment after that convulsive episode, I knew what the Lord was trying to tell me. Or at least I think I do! He was showing me that by taking those pills, even as a small child who knew she had been hurt badly by someone everyone trusted, I was trying to take away the pain and the life that God had allowed for me. My little mind could not bear what had happened to me. The reality that the ugliness of that scene was ordained by the same God who created me and crafted all of my days from beginning to this end was too much to understand. I would not have been old enough to say the words to my Mom or Dad describing what that boy had done to me nor felt safe doing so. My parents weren’t exactly touchy-feely type folks. Can a 3-year old feel shame? Dirty? Worthless? Overwhelmed? Traumatized? Terrorized? Surely! While I have known, grieved, and forgiven the players in this scene for a long time now, I didn’t know that my survival from that day forward in my own strength would be marred by discontent. Nothing in my life would be good enough, or so I thought, to make me truly happy or at peace EVER. The seeds of several of my character flaws were planted that afternoon. I know that it wasn’t my fault any of this happened. I was just a little kid. To survive abuse is actually a noble task and accomplishment. What IS my responsibility, however, is to figure out what to do with what happened to me, layer-by-layer as each level of understanding is revealed in my walk with the Lord over my lifetime. In due time we must all ask ourselves: Will I grow up damaged or will I heal and thrive? Fifty-seven years later, the wound from this particular scene finally healed completely.
I grew up in what you would call a “blue collar” family. My Grandfathers worked in their respective trades: my Dad’s father as an auto mechanic and my Mom’s father as a maintenance man/operator in the boiler room of an ice cream factory. My Dad got a job at the General Motors Tech Center as a non-degreed draftsman. Each of them were very skilled at their respective vocations. My Dad in particular, would end up redesigning slot car motors to make them among the fastest in the world and co-authored over 30 clutch-assembly patents with Borg Warner later in his life. Although each of them would earn a living wage to support his family such that their wives could stay home and raise the children, there was always an attitude that it was not enough. I have come to call this mindset a “scarcity” mentality. The adults in my family never seemed satisfied with the income or the lifestyle or the relationships to which they acquired. First it was my Mother’s Mom taking the last of her grocery money to purchase tickets in the Irish sweepstakes. If only she would win then she would be happy! I think she did win a time or two. I don’t think it ever changed much of anything though.
The harder part of this dynamic for me came from my parents, especially my Mom. “If only we could win the lottery” she would say, “then . . . .” fill in the blank with some material gain of some sort that she thought would solve our problems and bring happiness. Without realizing it, I adopted this mantra as well. It sure helped when my parents got divorced or when my Dad missed a visitation or when my Mom wouldn’t come home at night from her carousing adventures with Parents Without Partners. If we had a windfall of cash then it would solve all of our problems, right? This was back in the days before there was common knowledge that most people’s lives are not better when they win the lottery! Family relationships tank when relatives come calling for money and out-of-control personal spending often leaves the prize winner in debt not set for life! Sadly this mindset and experiences of abuse and trauma contributed to addictive behavior in my teenage and young adult years. What became my addiction of choice that I thought was my winning ticket out of my inner turmoil? Work-a-holism. I nearly drove myself into permanent injury working so hard at school, the early days of my career in healthcare, graduate school, and one relationship after another. By the grace of God, He showed me a better way when I learned about addictions when doing contract work at a large mental health hospital. My years continuing to seek answers ultimately led to a personal relationship with Jesus Christ. A new level of healing and a less frenzied pace of life began in my thirties.
That wasn’t the end of my discontent, however. Somehow I still looked more outside of myself than to the Cross for meaning, healing, self-worth, hope. A handwriting analysis in my youth said I was a very determined person. Well, yes, and that was not necessarily a good thingy! I sought counseling and studied God’s Word which did help me in many good ways. Yet like breaking in a wild colt, it still took repeated heavy tragedies from 2003 to 2007 to soften me for the biggest gift and the biggest trial that were yet to come. I am meeting you here after both of them: 1) marrying my Intended Beloved Steve and 2) enduring a serious illness that brought thousands of seizures virtually every day over 9 the past years. I have been grateful for the former.
Steve is an amazing man of God who loves me dearly as I do him. The serious illness not-so-much. I had never accepted the Convulsive Disorder or Dysautonomia or Dystonia or Functional Movement Disorder or Non-epileptic seizures or whatever you want to call it. What I came to realize this past week is that not accepting this illness is not a form of defeat. Rather, it’s not accepting that this is the Lord’s will for my life for my best good. It is the journey for me that will bring Him glory. And how am I handling it? I am denying His will for my life when I reject the pain and suffering that goes with the numerous blessings. Instead, I must trust that like all of the trials that have happened in my past, this illness serves a greater purpose. I may or may not ever really know what that purpose is. The episodes and medical complications may never stop. If I am to succeed at letting go of my discontentment with a traumatic event in my life at age 3 years old, I must also let go of the other thing that I hate in my life. Believing otherwise is believing a lie: a lie from the author of human suffering, sin, and death himself, Satan. No magical thinking (like a lottery mentality) is going to cover or remedy this lie. I MUST DENOUNCE my discontent, leaving it for my Lord to redeem.
How about if I repeat that another way:
No happiness or peace will come if I hold onto discontent over the Lord’s will in my life.
I knew in an instant, why that memory of me as a toddler came to me while grieving after another seizure. Both sorrows were and are part of my Lord’s Divine plan for my life. He will redeem my suffering one day and it will end. He will make all things new and good, and right; I will be whole. In the meantime, I am a steward of the experiences, people, places, and things He ordains for my life. My responsibility is to accept them with no expectations, no exceptions, no deal-making (“if only this . . . then that”), no holding back. So that night I let both sorrows go and wept deeply for a good long while.
Sometime later I shared my inner story of this incident with my beloved Stevers. He is warm and tender at these times as if to be my Jesus with skin-on. I am so blessed to be loved by this man after God’s own heart. His response? He marveled at how long abuse can affect the life of an abused person. Years. Decades. That a person can carry hurt his or her entire life because of the evil actions of someone who hurt them when they were little. I agreed. Yet for me, the hurt is never the same each time I get to revisit it. Each time I get to grieve some more. I get to heal some more. It takes what it takes. I get to see how the Lord uses even the ugly stuff to give me tools for coping and a gift of compassion for others. If I had not developed work-a-holism and that health challenge of hypoglycemia then I would have become an alcoholic. How do I know? My siblings and Mother were alcoholics, my Dad was mentally ill. One brother who overcame alcoholism struggled to find meaningful work then tragically had a stroke and was never able to function independently again up until he died earlier this year. He suffered with unspeakable pain and spasms every waking hour of his life. He had traded his bottles for cigarettes. What I am trying to say is that each of us had horrific wounds to overcome. Today I am the only one still here of my immediate family to write the stories. Oh Lord, may these words yield some goodness beyond the tales of sorrow for the goodness that is there too.
Because there is much redeeming value in our stories beyond the sorrows. Nothing is wasted Gentle Reader, in God’s economy of time and space. Letting go of the sin of discontent, perhaps after grieving its root-cause, is a work of the Holy Spirit in our lives. He will bring you to it and see you through it. Healing is complicated and can take a very long time to process. Be encouraged. I tell you as in the song of Peggy Lee, the BAD is not all there is to a fire or the circus of the circumstances in our lives or a long lost love! There’s even more to life than the happiness of a fleeting moment such as in a windfall or slow dance with your beloved. Just go to the Cross. There you will find a peace that transcends all understanding. The best gift of all is waiting there for you this day, this night. He promises. On this we can rely.
The glass chamber is designed to match your body temperature while you complete the subtests of the Pulmonary Function Test. Mike did his job. Steve helped where he could. And for me?
The trauma was REAL.
The cardio-pulmonary work-up continued this past week with a carotid ultrasound, beginning of a 7-day EKG event monitor, and the torture chamber otherwise known as a Pulmonary Function Test (PFT). Perhaps the PFT is not designed to create stress but completing it between 5 sets of convulsive episodes was a real bite in the shorts!
I knew the risks for me for the PFT from having completed one about 5 years ago. We were unable to progress to the section administered after a bronchodilator medication because of convulsive episodes triggered in the first few subtests. So this time I asked my beloved to drive me to the hospital for the test and brought with me several rescue remedies that sometimes stop the attacks. With assistance to administer them I might get through it all. When Thursday came I was not motivated to head out the door for the hospital and after only 4 1/2 hours of sleep. Looked like it was going to be the same story, different day.
The first part of the test went alright as Respiratory Therapist Mike kept a close eye on me. I had given him the spiel of what can happen if I had a seizure attack, including the request not to call the paramedics if I had an episode! He said he understood and actually stayed calm throughout the entire ordeal. Seizure-like tics began after the 2nd subtest and most of the ones that followed. Steve graciously brought me the ice pack I had in my lunch bag which served to slow each episode once placed over my sternum. We continued and eventually got it all done like a good beating on a warm summer day.
The test that required you to breathe against resistance was particularly frightening. When deep breathing or panting re-triggers the episodes, I thought that surely breathing against the mouthpiece where my airway would be blocked would be good. On the contrary. It actually calmed me down considerably! Holy cow. Have we found another tool to help control these dang things? Mike said that breathing against resistance stimulated the vagus nerve. Well there you go again. I first started looking into vagus nerve seizures and treatment strategies at the beginning of 2018. This ultimately led me to see a Craniomandibular Specialist and the rest is now history. But here we are again. The trigeminal nerve of the TMJ and the vagus are interrelated cranial nerves. To date only these 2 of the many vagus nerve stimulation techniques I have tried have proven to be helpful. Turns out there is a difference between the sympathetic and parasympathetic fibers of this 10th of the 12 cranial nerves; the trigeminal is the 5th. We shall revisit this topic here again another day for sure.
The PFT was scheduled for about an hour. We left after 2 hours! Each time there was a trigger of seizure-like tics, we had to stop for me to struggle to pick up the ice pack on the laminate floor of the glass chamber, apply it to my chest, then wait for things to calm down again. The violent shaking wrenched my neck. I longed to lower myself to the floor and curl up in a ball, holding my head and neck. The pain, the pain. At home I struggle (or Steve carries me) to lie down someplace safe where I can grasp my head and neck to prevent whiplash. Not so during the PFT. My right leg banged against the metal frame and glass walls of the chamber a few times; my body tensed with fright as I feared falling off of the narrow stool and onto the hard, linoleum floor. No warm blanket was anywhere to be found. Mike and Steve just watched in silence each time. What else could they do?
Times like these finds me terrified of falling and getting injured. Gratefully I have never fallen even after thousands of these wretched episodes. But initiating movements of any kind to either speak, break a fall, or otherwise create safety exacerbates the directionality and velocity of the seizing; this in turn creates a high risk to fall or get injured! Too bad that I am awake to remember all of this hell unlike an epileptic seizure where the person is unconscious. (Well it’s probably good so that I don’t have the injuries that can come with falling after passing out.) I guess it’s my own form of grace manifest as survival mode. Tense my muscles to prevent of a fall but trigger a rebound: increased rapid-fire, uncontrolled shaking of an appendage or two that may bang against whatever is nearby. Metal frames and glass walls. Still can’t speak most of the time. Breathing? Yeah maybe. Oy vey. I hate this!
It took awhile after the PFT was over to regain enough muscle control to walk out of the chamber of doom to a chair across the room. Perhaps it will be diagnostic for the cardiologist later this month as to why forced-breathing maneuvers trigger such bad episodes? Maybe the test results will show something this time? Everything flooded my mind as I tried to be pleasant to the two men staring at me the whole time who were powerless to do much to help. They were both most kind. I could see it in their eyes above the masks they both wore. (I was the only one allowed to remove mine! Go COVID-19!) Mike and Steve remained standing as I slumped into a hard plastic chair in the opposite corner of the room. One of them asked if I needed anything but I just couldn’t speak very well yet to respond. Managing the wires from the EKG event monitor, holding the ice pack to my chest, and groping for a snack bar in my lunch bag for something to revive me was about all I could handle. Steve opened the packaging of a Clif Nut Butter Bar and helped me get a drink of water. He knows the routine well. Love that man!
Cracking jokes has been my way to bring humanity to this hell when someone new comes along for the experience. “Welcome to my nightmare.” “I guess I’ve completed my involuntary exercise program today.” Or something similar are my usual bylines. I let a few fly. Before long we were leaving. I was walking verrrrry slowly however.
Somehow I got through a telehealth medical appointment a few hours later followed by a full day of several long blocks of sleep. Thankfully I had made some food ahead of time and thankfully Steve was willing to bring me a meal later on as I began to recover. My Skype appointment on Friday needed to be cancelled and I declined an additional make-up appointment from a second Provider. I was too weak and shaky. About all I accomplished on Friday was a load of laundry and achieving many levels on a word game app. The pup got lots of scratches too.
Two days later I realized how traumatic all of this was. A dearth of tears busted out after yet another bad episode and eventually I got the story typed out here. Perhaps someday these wretched convulsive episodes will stop. Maybe my beloved Steve and I will actually get a peaceful night of sleep on a regular basis, together. Maybe my life will be about the volunteer stuff I get to do here and there instead of medical appointments every week. Seems like we are getting closer than ever before to the mechanism of action of what triggers and what stops these waking, convulsive episodes; I have a few rescue remedies that keep me out of the emergency room these days. Yay God! Lord willing, I pray and plead, my Jesus will mercifully bring me to complete healing. Maybe someday soon? JJ