Don’t you just love a good movie? The kind where you cannot predict the end until it ends or one where you find out what happened to the characters from the first of the series? Yes, everyone loves a good story with a happy ending. As for me, I’m just glad for happy moments!
I decided that it was time to update my video log of the most challenging aspects of the illness I am battling. Included in my “sequel” are some photos of happy moments and some notes meant to be of encouragement at the end of the story. Overall I admit that it’s kind of tough to watch. Sometimes my beloved, Steve, and I (in our attempts to cope with this daily saga) get into a numbing routine where I go off into a back bedroom for a wretched episode then he comes by later to check on me. I’m safe in bed: I won’t fall out or anything like that. He prays as he endures the horrifying vocalizations echoing throughout the house, knowing that there is virtually nothing he can do to lessen the burden. We simply ride it out until the next one comes along, whenever that may be.
Gratefully we have discovered some things that consistently trigger the seizure-attack episodes or make them worse. We don’t do these things where possible! I mean that with nine gatherings last week in celebration of two weddings it was pretty tough to eliminate all extraneous factors. We did our best. I made it through five events relatively o.k., was Skyped into another, left two early, skipped a reception, and was carried away from the second to last event after the introduction of the happy newlyweds. Not bad for a massively ramped up schedule and for someone battling Chronic Inflammatory Response Syndrome. Or is it Lyme disease? Biotoxin illness? Non-epileptic seizures? No one really knows for sure.
So here it is. No popcorn needed. A tissue might be worthwhile. All prayers are welcome. I am looking forward to the day when this illness is resolved. In the meantime I stand on the Rock of my salvation, trusting in my Lord and Savior Jesus Christ to go with me and deliver me in due time. One day in this life or in heaven, I WILL BE FREE. It’s the promise in which all of us who call upon the name of the Lord can rest. Thank you Jesus for your amazing grace.
Here’s a brief update on my brother, Michael, and me with a prayer request:
At this moment Mike is moving from an acute, inpatient rehabilitation facility to one of the lowest-rated nursing homes in the city of Detroit. The social workers claim that of the 35 facilities they have contacted, St. Francis is the only one who would accept him. The reason? He is “Medicaid Pending” and does not have any other insurance. We are sad and concerned.
Today Mike’s rehabilitation stops until Medicaid is approved. Today Mike learns how the indigent of our society are left behind in facilities located across the street from an abandoned buildings in scary neighborhoods. Today Mike decides whether or not he is a FIGHTER. I only got to talk to him briefly before the transport vehicle came to wheel him out of his private room and begin the next leg of his recovery journey. He has made tremendous gains in cognition, swallowing, self care, transferring from one seat to another, and even walking. Mike has had close monitoring of his medical condition, medications, and test results. The plan to address a complex cyst on a kidney remains unclear as he moves away from his rehabilitation and medical specialists. None of them go to the new facility. It is unlikely that he will receive any rehabilitation therapies from this point forward until his Medicaid is approved. We are sad and concerned.
We are hoping that this transfer is a move sideways and not the beginning of a downward slide. At this point I do not believe that he knows that he will be receiving fewer services. He is concerned about the facility location and the comfort level of his fiancé visiting him in an unsafe neighborhood. Gratefully our cousin, Lisa, is an optometrist who sees patients there every 6 weeks. She has known the staff there for 10 years. We are hoping that this helps place Mike in a favorable light. Lisa has also offered to accompany Mike’s fiancé, also named Lisa, on her first visit to the new place. I am exceedingly grateful for this. I wish I could be there too. I cannot go at this time.
I had my own questionable “move” this past weekend. Difficulty breathing and bizarre, violent seizure attack episodes landed me in the emergency room. I received “treatment” and returned home; the last three days have been marginal yet better in some ways. I saw my family practice physician yesterday and was able to put together a few plans to tighten up my treatment plan. Unfortunately I had to escape outside for fresh air THREE TIMES due to the mold aerosols in his water-damaged office building! Did I mention that I was already wearing a charcoal mask? Geez. I was re-reading the Clinical Summary this morning from my visit and collapsed at the kitchen table into a pile of seizure-like tics. Perhaps the aerosols followed me home on the porous copy paper? Who knows. My gracious husband has seen me through it all, threw out the papers this morning and opened the bay windows to help me revive. Thank you my beloved Steve!
Sometimes it looks like things are going downhill when actually we have just stepped a little to the side. Many hidden blessings have come from my brother’s stroke: developing a closer relationship with his fiancé, rekindling a friendship with my amazing cousin Lisa, and seeing a few family members step forth to love on my brother are wonderful. And in my own situation I now have a biotoxin illness doctor who is willing to go to bat for me when headed to the ER on a Sunday in addition to an incredible husband who is my kinsman redeemer. Steve is willing to love me, care for me, and defend my special needs when needed on my journey to wellness. He believes me that this crap-ola-ski is NOT all in my head and is helping me overcome it too. In both my brother’s and my own situation, I am seeing new expressions of love that have not been there in our lives before. Cool beans. Thank you Jesus!
Gentle Reader, would you kindly pray this scripture with me? I pray that we will lean on the Lord, trust in the Lord, and have courage to move forward when-and-as the Lord leads these next few weeks. I need to rest in the tender care of my Jesus and not get ahead of the work He is accomplishing in today. After all, I do not want to miss the richness of His tender care, His presence in each breathing moment. Such a joy it is to know that He is here carrying Mike this afternoon in that transport van. Such a joy it is to know that He is here too with me and you carrying our thoughts and prayers to our Heavenly Father for His wise care according to His Divine plan for our lives. Perhaps sideways is a good place to be right now.
Want some bulletproof coffee? Let’s go out on the patio and sit for awhile. The sun is shining this afternoon and the narcissus, tulips, hyacinths, and buttercups are blooming!
The prophet Haggai in the Old Testament had to remind the nation of Israel that the current day was as good as any to rebuild the temple of the Lord. They were preoccupied with the day-to-day events of their lives, much like we have with some variations. These days we have Twitter updates flashing or beeping us the latest trivial matters we used to not care about to the stress of keeping up with the accelerating pace of life. It takes more effort than ever to SLOOOOOW DOWN and smell the roses.
Ooops! Did I fertilize them with Rose tone when I cut them down on Saturday? Shoot. I better fertilize the William Battin climbers now because they are growing and wait to feed the Knock Out rose bushes since they are still dormant . . . And off I go again . . .
When Pastor Paul Mowery preached on the book of Haggai recently he asked the congregation a question about the things we once promised the Lord. What did I feel led to do as a young Christian or during a time of spiritual growth that I am not doing today? What happened? Was the inspiration transformed into another purpose or forgotten altogether? Hmmmm. Even when facing times of crisis this is a question that benefits from our reflection. If all things work together for the good of those who are called according to His purpose (Romans 8:28) then it is possible to further our ministry purpose even in fast-paced or challenging times. And for most of us, these are challenging, fast-paced times!
Some of you know that my brother (Michael) had a stoke 9 days ago. Today Mike will be transferred from an acute cardiac/telemetry floor in a hospital to the rehabilitation unit. We are encouraged by this news! This means that he is stable enough to tolerate up to 3 hours of physical, occupational, and speech therapy per day in addition to having his funding issues largely resolved. (He does not have health insurance and is applying for the Medicaid Extension Program.) Mike continues on a “pureed diet” and “thickened liquids” (aka Pepsi!) with one-to-one feeding for swallowing safety. He has not moved his left arm or leg yet since the onset of the stroke one week ago. While his speech slowly improves, I understand that his mental status varies in the finer points of reality orientation testing. This has delayed the filing of his Power of Attorney for Healthcare status needed in case of an adverse event. And lastly, there’s a decision pending of whether or not he will have surgery to place stents in his carotid arteries: with high blood pressure, the occlusions were the cause of the right CVA. All-in-all, Mike is embarking on the next leg of a long journey of recovery; we are grateful that that next step is beginning today.
One of the most significant events from my visit to see him last Tuesday was his statement through garbled speech, “I need Jesus.” When he said that I was speechless myself. I was still responding to the horror of seeing my brother so severely disabled as he lain in bed with his waxy bed rest complexion, sunken left side of his face, catheter-and-wires attached to his skinny frame, and lifeless look in his eyes. I had to dash into the hallway as my eyes flooded with tears! The night before we travelled out of State to see him had been a nightmare anticipating that moment as it triggered residual grieving from the loss of my last grandparent, parents, and youngest brother over the previous 11 years. So the the next day in the midst of my own emotions, my dear brother reminded me of what was most important. Yes, “I need Jesus too.”
What Jesus has for Mike will of course be different from what He has for me. Our health challenges are different yet both bring significant physical weaknesses. The seizure attack episodes have increased to over 4 hours per day now with the worst ones occurring after waking up in the morning and after dark in the evening. I can do nothing but lie in bed and ride them out. I no longer can tolerate the high CBD hemp oil that gave me relief last month. It doesn’t work anymore anyways. Another medical doctor has set me adrift after only 2 months of working with him! Gratefully there is a Dr. in his practice (a biotoxin expert) with whom I am scheduled to follow-up with next week. Gratefully I have already completed the preliminary lab work she requires. In the meantime I have about 6 hours each day where I can function at a reduced level. And now in the face of my brother’s devastating stroke, I see how very fortunate I am. I am optimistic for a full recovery from the biotoxin illness that I once thought was Lyme disease. Sometimes it takes 2 1/2 years to find the answers for which we seek, and for which the Lord may bring. It takes what it takes as I wait on the Lord. And in the meantime I have built a firm foundation in trusting Him through what ever may come. I didn’t say it was a perfect one! It is solid in Jesus Christ and His Word.
Mike is yet at the beginning of building his foundation. Indeed he will need Jesus to do the tasks ahead of him both for his own recovery and to be a wise steward of the love relationships in his life: that with his fiancé (Lisa) and Lisa’s son (Alex). Gilbert the dog should be fine. 🙂 I am sad that his journey looks insurmountable in the beginning. The obstacles appear tremendous in the humble opinion of an occupational therapist on a medical leave. All of my training is rushing forth wondering about the potential for new complications and very real permanent disability. I am going to need help lying all of that before the Great Physician for His wondrous omnipotence and care. With Jesus, all things are possible and Mike’s illness will not be wasted. Mike has professed faith in the Lord, Jesus Christ. The Lord will meet him on his bed of sickness and redeem it for His glory. In that we can be sure. (Psalm 41:3)
The call to build can be a frightful one in our own strength. I submit to you that we cannot build anything of lasting value in our own strength. The outward man and the trappings of the stuff of his life will fade away in due time. Only things rendered unto the Lord and completed with His leading will last. Yes, Mike’s call to rebuild his body begins today with a transfer to the rehabilitation floor of the hospital. My own call to rebuild comes with revisiting the biotoxin protocol I discovered over 2 years ago. He and I are like every one of us who faces the question of what will consume our time, energy, and talents in the next 18 waking hours let alone the rest of our lives. So what will we do with our discretionary resources? How much discretionary resource does each one of us really have? And are we spending it for what will last or for what is, in the end, meaningless dust in the wind?
As for me, I know that I am called to write about my experiences within the context of the will of the Father in my life. Writing poetry was my outlet ten years ago when I could hardly write a complete sentence due to my emotional pain. Today I leave you with the words of the second wisest man (King Solomon) to ever live after Jesus Christ. I left these words in Mike’s room in scripted on a tiny plaque that encouraged me so long ago when faced with the task of rebuilding my life. May they encourage you too, Gentle Reader. Let us both begin to gather ourselves that which is needed to build something of lasting significance, beginning today.
“Don’t cry. Don’t raise your eye. It’s only teenage wasteland,” sung by Roger Daltry and Pete Townsend of The Who in Baba O’Riley, 1971. (Decca Label)
The first rock concert I ever attended was “The Who” at the Pontiac Silverdome in Michigan. The venue doesn’t exist anymore and neither does the band! I will never forget the experience of seeing so many drunk, stoned, and wasted young people in one place before: the place probably held 80,000 of them that night!
I got to go to the concert for free as a member of the Warren Jayteens. The Warren Jaycees had a hot dog booth at the newly constructed Silverdome and we earned money for both of our community service organizations by working in their booth during Detroit Lions football games. The Who concert was to be the first rock concert scheduled at the Silverdome. When our Advisors in the Jaycees asked us if we wanted to work at the concert of course we said YES!!! Gratefully we ran out of our supply of hot dogs that we sold as Hawkers in the stands just as the concert was about to begin. We walked along the first level searching for the best view of the stage from the back of the seating area. It didn’t matter that we did not have seats. We were there!
I was there for the music. It appeared that virtually everyone else was there to get “wasted!” Sure is funny how my use of the term “wasted” has changed over the few decades since then. Flash forward and it appears that my hope these days is that my life and what happens to me will NOT be wasted! Time and experience are precious gifts to me: a blessing from the Lord to spend reveling in His glory, His plan for my time on this earth. We can’t take back either one after they are spent nor can we do them over again. So I want to be fully present in the gift of, well, the present and rest in its purpose or meaning.
Therein the challenge lies. How does one make sense of the savage beast that has become a part of my daily life? Shall I accept this thorn in my flesh or fight for the cure with every resource available to me? Do I drag my beloved husband through the details and horrors of every experience or escape alone: just my Heavenly Husband and me? These are the questions with which I grapple these days. And more often than not, my quest for meaningfulness falls short in a pile of wasted time, lying on a bed, seizing from head to toe. Then there’s the recovery phase. Such a raw deal at many levels. Wasted indeed, or so it seems.
There is no taming the savage beast at this point in time. Oh sure there are things I have learned to avoid that make the seizure attack episodes worse like consumption of simple carbohydrates, new treatments, exposure to mold and noxious sensory stimuli, and travelling away from home into unknown environments. But to make them go away: not a chance so far. I haven’t had an episode-free day in many months. Two years have gone by in this personal hell. This past week landed a night with a total of 6 hours of seizure and convulsive episodes with a 4-hour break in the middle somewhere in which I think I either passed out or slept. Yeah, that night was supposed to be part of a special visit with family at their newer home out of State. By the grace of God we had a few fun moments despite all of the suffering and post-seizure noxious symptom load thereafter. Guess you could call those minutes His redeeming grace. The scene captured below with my adoptive grandson, Jackson Rees, is a treasure to me. Treasures sometimes come at a price. Price paid. Moment not wasted.
And so it goes. Treatment continues for a systemic Candida infection. Treatment is on hold for Lyme disease and the mold-related illness called Chronic Inflammatory Response Syndrome. In this moment in time I just hope that the food I ate an hour ago didn’t have too much starch to turn on a yeast rock and roll concert in my brain. As I close here, I guess I’ll just look out of the window of my mind and note the wonder that lies beyond. This too shall pass and with it will come an amazing story of the Lord’s sustaining grace through the firestorm of illness. (Philippians 1:12)
I am so very grateful for my Lord and Savior: Jesus Christ. I just couldn’t make it without you! And if it is Your will precious Lord, please end this nightmare. I am ready to live again.
Philippians 1:21 (NIV)
21 For to me, to live is Christ and to die is gain.
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For more on non-epileptic seizures of biological origin, see the You Tube video in a previous blog: Hell on Earth
Jesus is for the Wounded 
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