What else could they do?

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

King Tut Grass and Cannas @ParkviewHealth
Mandevilla vine, Begonias, Geraniums (right) and Potato Vine (left) @ParkviewHealth

Freedom from Rain

Rainy weather working its foggy magic on a landscape is beautiful. A rainy day encourages introspection. Or at the very least a nap. I love the rain in all of its spirited and benign forms. But we have had rain day after day without much respite. This is rain of a different sort. Too much rain foments rot both above and below ground. Too much rain spoils blooms. Too much rain dampens the spirit. We have had all of the aforementioned. 

Deborah Silver

Is it the rain or the cold that gets to my weary bones far beyond the havoc it reigns in the garden landscape?

Perhaps the dry-out late in July that parches the land through the Fall is even worse, when my soul aches for a simple cup of relief?

How will I look back on this season of my own life where moments of respite, nourished from the right care gives way to occasional relapse and now tragedy?

Alas my dear brother, survived with me but not with our youngest, Rob, lies in a coma amidst the sterile hum of machines you could never repair

In your appliance servicing days let alone fix your own broken spirit from never quite fitting into the affections of our Dad but perhaps too much by our Mom?

What is Mike’s world like right now: can he hear the buzz, taste the plastic tube down his throat, smell the air now sanitized and finally free of cigarette smoke?

I ache for you as I did for Rob. You two never did get the advantages I had as the oldest nor fight long enough for better despite our childhood traumas.

Or perhaps that first year of my life cinched it when there was more love to give in both bloodlines . . . oh how I wish I could go back and carve more out for you!

The Lord grieves for us three as now you are now in the juxtaposition from time to eternity. It’s just not how He meant it to be you know.

I will love you forever Mike. Godspeed if this is the end. Go to your Maker and live at last, totally freeeeeeeeeeeeeeeeeeeeee!!!

A rain garden rises from the soil and rocks, bringing beauty and purification. Consider this a sign in the natural world of His creation that imitates the glory of a life surrendered to Christ.

Prayer Request

Gathering medical records and other documents, making travel arrangements that accommodate my sensitivities, and putting together a timeline of the serious illness I have been battling for 8 1/2 years has been an emotional process for me. Just surviving to this day has been a traumatic experience. The blessings are there too yet not as clear right now with the hundreds of sheets of medical records behind me as I type this post.

I have endured so many dead ends and dashed dreams for recovery, physical damage from thousands of convulsive episodes, tens and tens of thousands of out-of-pocket expenses, and so many losses on every front of our lives. One truth is clear that I would not have survived this far without my faith in our Lord, Jesus Christ. He was my Rock when my breathing would not start in the darkness of night or my legs would not move to get me to the bathroom. Both my beloved Steve and my Lord carried me through it all to this moment in time.

Regardless of what has gone before us, Steve and I are pressing forward, hopeful for a good result at an upcoming consultation at the Mayo Clinic. For the first time since the onset of this serious illness, I get to see one of the top Doctors in neuroimmunology at THE top medical facility in the country. That is humbling. I am grateful.

Now is the time to pray for a cure to the daily convulsive episodes. Lord willing, I will be well! Thank you for your love and support, Gentle Reader. Love to you, JJ

The Dog Behind the Curtain

Dimly lit, like the medical equipment stored all around me, I sat in the vinyl seat of that cold wheelchair.  My head was unsupported as I writhed this way and that, right leg then left leg shaking uncontrollably.  Breathing was irregular and challenging as I pushed the air out of my chest to start the cycle again then again, gasping every few intervals.  Just my legs were visible from behind the curtain drawn along my right side and lit from light in the hallway.  A passerby might see my exposed knee bouncing up and down from underneath my torn jeans or maybe not.  Who would expect to see a middle-aged woman seizing just beyond a dark veil anyways?

Most likely a dog in a kennel could be positioned in such a fashion!  Perhaps to put her to sleep, to stow her away out of sight, to deal with her later?  Only a mean caregiver would treat an animal in such a way.  Or perhaps a nurse in the outpatient lab of a local hospital?  The latter was my lot this afternoon.  And hours later I grieved the insensitive treatment that I had received (rather had not received).  She never even responded earlier to my light chatter or attempts at humor as she withdrew 10 vials of blood from my scarred veins.  I had to ask her with strained breaths not to wheel me into the waiting room where others would gawk at my strife.  Holy cow.  Aren’t you paid to care for your patients?  You don’t have to care about me personally but HAVE YOU NO HEART?

Most of them have seen me react many times before to medical procedures that trigger anywhere from a couple of moments of shaking to over 2 hours of convulsive episodes and long after the procedure in their outpatient clinic was completed for infusions, injections, blood draws, and port flushes.  Several times other nurses have had to find coverage for their stations or stay late to take me to the bathroom in a wheelchair while my body writhed, gasping for air like a child with cerebral palsy.  Eventually the episode would resolve minutes after voiding in the toilet.

Once I was in the clinic having an infusion of fluids on my birthday and ended up spending the entire evening in the Emergency Room when the seizure attacks would not stop.  That was 2 1/2 years ago.  Twice they have had to call my husband to come and get me or bring me a medication to try and make it stop.  Dozens of times they have just allowed me to sit in a treatment room recovering, long after they had gone home for the night.  A p.m. shift nurse would come in and check on me every 30-60 minutes as I stared at the walls or the mobile T.V. screen in front of my face.  When I could walk again I would move to the lobby for another interval of time until I was stable enough to go home.  No one even noticed I was there.  By the way, they always play my fav HGTV in the Surgical Waiting lobby dontcha know?

This time the aftermath felt like being banished to the broom closet by an abusive grandmother.  I could not reach the call light and no effort was made to make it possible.  I heard the same phlebotomy nurse chatting lightly with the next patient after me who was there for an EEG.  And again with the lady having a blood test.  I guess they were less “complicated” than me.  They probably didn’t remind said nurse of her own seizure episode many years ago that had disrupted her life for 6 months.  (She had told me about that earlier this year while I was sitting in the clinic recovering from an episode triggered by the pain of the needle stick and extraction.)  Yeah maybe that’s it.  Or did she just want to get back to the break area this afternoon and not be bothered by me anymore?

These episodes and experiences create additional trauma for the person enduring a serious, long-term illness.  You come face-to-face with the reality that people just don’t care as much as they should or get tired of caring, even as professional care-givers.  Take more of their time, their effort, their expertise, their personal comfort than they are willing to give and you will struggle making up the difference.  You are pretty close to being on your own.  It is not your fault yet it is your fault.  Suck it up and figure out a way to get home and not kick the dog when you get there.  Almost 3 hours later I felt as beaten down as I could possibly be as I walked out of that place.

A warm fuzzy friend with big brown eyes and wagging tail greeted me at the door when I got home.  She loves me.  I love our Elle.  So at least for me, I will be caring for our dog in a well-lit room with all the comfort measures she needs within a reasonable time of her letting me know that need.  She may not even need to ask me.  I know what she needs.  I care about her and know how to take care of her.  She will not be shunned to a dark corner behind a curtain as others are walking by.  At least unless she is barking wildly at the UPS or FedEx driver, that is.  Into the laundry room alone you will go . . . but just for a moment or two.  She would bite a chunk out of them if I didn’t!

Well Elle, I must say that I know how you feel. Grrrrrrrrrrrrrr.  JJ

woman with dog, German shepherd, travelling, pet, Nissan Frontier, trip, jump seat

The Gentle Giant

Standing over 6 feet tall, the man could have been mistaken for the childhood Green Giant hero of the Television Age.  He let his hair grow long, beard get kind of scruffy, and middle section pudge just enough to make his bear hug just right.  The children squealed when he growled and chased them back up the basement stairs when he had enough of their antics and needed to get back to work in that mysterious and yet wonderful business within those concrete walls.  More on that story another time.

The man was as conflicted as any could be in this life.  I’ll call him the Gentle Giant or GG for short.  My knowledge of him is pieced together from some vague memories, his hand-written journal, a few newspaper clippings, internet searches, and the stories from family members. Call it a great tragedy or perhaps work of satire as he never reached his full potential in this world.  Lord knows, he tried.

GG grew up in the blue collar suburbs of Detroit, Michigan as the son of an auto mechanic and never-quite-satisfied mother.  His dad let his mother rule the household including harsh discipline for the boys of the family.  Beatings, torture, destruction of their few prized possessions, restriction of food, verbal abuse, and lying about it all to suspicious outsiders comprised his private hell.  She destroyed his model airplanes, locked him in the closet, and made him sit at the meal table all day and all night as abusive punishment for just being alive.  The next generation (grandchildren) would be treated differently as would the girly middle child; the oldest brother would turn gay and befriend his mother and father in a strange twist of survival-perhaps-denial until he died of AIDS in his forties.   The baby of the family barely made it out alive when the older siblings were no longer around to protect him.  GG, the second oldest of the four children, had finally found his way to break free.

GG made a plan to marry the first woman who would accept his hand in marriage.  It took a few years after high school to find a suitable mate who was willing to marry him, perhaps in an attempt to escape her own abusive and alcoholic father.  They quickly had 3 children and a relationship burdened by his physical abuse of the mother.  The oldest took an overdose of her mother’s thyroid medication requiring having her stomach pumped at only 3 years old; the middle child developed a life-long inferiority complex from being told by his dad that he resembled his mother’s family more than his.  And this was only the beginning of things that went wrong in that household.  By the time the five of them had moved from the trailer park to their new home, GG was having periodic psychiatric breakdowns.  Experts have determined later that these were likely the psychotic breaks of paranoid schizophrenia.

GG struggled with the adult responsibilities of work, raising a family, relating to his wife, and managing the internal chaos of his mental illness.  He came into the realities of adulthood with too much brokenness to overcome; he was a brilliant inventor and draftsman yet could not control his own mind to ever find true happiness or success.  GG defied the counselling offered and declined the psychiatric medication newly developed that could help control his thought disorder.  He took an extended leave of absence from work and, instead of getting well, used the time to build a business in the unfinished basement of their home.  It became wildly successful in the hobby world of the 1960’s. How his employer never found out is another mystery.

Unfortunately the same ingenuity that brought him initial success 1) as a non-degreed draftsman for a major automaker and 2) in the home business, did not work when he applied it to his mental illness.  He experimented in psycho-cybernetics, hand writing analysis, the occult, various activities of the hippie crowd, drinking alcohol, and more.   Eventually he left town on his motorcycle with some blonde chick for California with all the profits from the business . . .  The children saw his father come and go in a myriad of painful and confusing scenes over the next few years until finally their parents divorced. Their dad lived in another suburb across town thereafter but the holiday visits and false hopes for things to be right never fully materialized.  Eventually GG left town for good and had no direct contact with his family for the next 27 years.

GG sent threatening letters to his mother for several decades, perhaps wrestling with her years of abusing him and what to do with it.  Sadly he hurt his own children as well in other ways. Over the years, the oldest daughter had witnessed satanic rituals, was abused by some women in the course of some psychedelic mayhem at his house across town during a visitation weekend, and was then tortured herself by GG in an attempt to help her “forget” what had happened to her.  The middle child witnessed his father’s domestic abuse of his mother and personal self-degradation as his father used mind control techniques on him in a misguided attempt to try and help his son.  The taped messages he recorded ended up having an opposite effect!  And the spirited youngest boy got as far as he could in life then, as a young adult, tried to find his dad who had left the family when he was barely past kindergarten. His dad’s letter of rejection was found by loved ones in his wallet after the young man died of alcoholism.  The surviving family grieved deeply.

GG’s experimentation with mind control techniques inadvertently opened himself up to the demonic realm.  The darkness in his eyes reflected this in particularly frightening scenes recounted by his children.  Knowing this, understanding his abusive upbringing and resulting mental illness then their own coming to faith in the Lord, Jesus Christ, has helped the two surviving siblings forgive their father.  They have found peace with their past and with their dad. The man was simply lost.  He had no idea the dark world he had incited nor the abuse he ended up carrying from one generation to the next.  It took the daughter in particular, many decades to understand this and break free from the trauma and demonic influences.  How that happened is yet another story.  The miracle of overcoming such hell gives testimony to the incredible power of the gospel through our Lord and Savior, Jesus Christ.

Thirty years after the oldest sibling last saw her father and two months before he died, she got to meet with him at his retirement/trailer park in Florida.  They had slowly developed a new relationship by phone before he eventually agreed to a visit in person. The Gentle Giant was frail yet charmingly engaging.  He told her tender stories of her days as a little girl and of how proud he was of her.  He told her that he loved her and by the time of their visit had shared how he had to leave their family to protect them from further harm.  More psychological breakdowns had occurred over the years.  His isolation from family and most of society became part of how he managed his illness in addition to long sabbaticals from work. He jointly held over 27 patents with a major manufacturer of automotive parts and would say that was why they “put up with him” and his leaves of absence.  The woman would see how creative her father was in crafting his life with the fragments he had been given . . . how incredibly her Heavenly Father would sustain her own life until those sweet moments of reconcilliation with her dad could bring closure, bring healing, bring some sweetness too.

Our earthly fathers have incredible importance in how we turn out in our lives.  They are the first authority figures in our lives who initially influence how we relate to our heavenly Father who is exceedingly greater and perfect;  ways that our earthly father can never be.  A loving relationship with both are critical for grounding us in this life on earth.  Even in the absence of a good dad the yearning of our hearts can lead us to the One Who will never leave us, never forsake us.  I do pray that in this story you will see how the “seeking” of one young girl as she became one older woman led her to overcome the failings of her father by filling those empty and hurting places with the unfailing love of Jesus Christ.  Graciously she did get to feel at last, the love of her real father before he died.  Not everyone will have this kind of opportunity; others will experience it their entire lives.  Regardless, we all can be whole no matter what darkness has fallen on our journey through this life.

I understand these experiences very well nurtured with truth from the Words of our Lord in His scripture and the indwelling of the Holy Spirit.  Further, the Gentle Giant in each of us can be transformed from sorrow to joy if we but believe in His holy name, Jesus Christ. Healing and fullness of life will follow us all of our days into eternity.  I love that.  Oh Heavenly Father, I thank you for this story and for Your story of redemption too.  May you speak to the heart of the Gentle Reader who finds these words this day, filling him or her with your goodness. Bring them into the best of relationships found only with You.  Bring hope beyond what we all can see.  For your glory I pray in Jesus’ name I pray, amen.  JJ