Way back in November 2005 I preached a sermon at Gold Creek Community Church about Revelation 3:20
I’ve been away from social media for a few months now. I found myself increasingly not wanting to post or say anything about my condition because it’s so depressing. I hate to bring depressing news to people but this is my world. Several people have been asking so here it is… (last chance to turn away if reading this will cause you too much distress)
The Bad News
In the past few months my disease (Adiposis Dolorosa) has taken a turn for the worse. Much, much worse. I’ve become more and more disabled and my pain has dramatically increased. Recently I had another fruitless trip to the emergency room after spending about 4 hours in a semi-comatose state along with extensive dystonia.
Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. The movements may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may “overflow” into adjacent muscles.
I’ve had these episodes before but this last one started out with an increase in my double vision, severe head pain followed by nausea and vomiting. Fortunately, I had a doctors appointment scheduled that morning and my mother was able to coax me into the car. At the doctors office, the shocked staff quickly brought a wheelchair. I was unable to keep my eyes open or speak very much at all when there. The doctor who had never seen me in this state previously kept looking at the records of my evaluations with Neurologists only to find nothing. As he said, the problem is that when I am not having an episode like this I don’t appear to be very sick. This causes Neurologists to suggest that I am in need of psychological help (a suggestion which sounds like “This patient is delusional and faking his symptoms” to me). In the past two weeks an event of this severity and duration that had previously occurred once or twice a year has happened four times.
The Good News
Having to leave seminary and ministry because of my illness sent me into a tailspin of depression and crisis of faith. The other morning as I was heading into the event that led to my trip to the hospital instead of listening to rock tunes from the 70’s and 80’s I put Pandora on a station of worship music. As my body drifted into semi-consciousness I was glad that I was listening to songs of worship. I believe this was the grace of God comforting me in that difficult moment. Since then, I’ve found a renewed interest in scripture and worship for which I’m very grateful.
To those who I’ve ignored or shut out over the past few months, I apologize… I’m sure you can understand how I really hate being a perpetual bummer to those around me. I suppose it is better that I stay engaged as long as I am able.
Most of my life thinking was pretty easy for me. I loved thinking. Reading, writing, designing software and engaging in spirited debates.
When I learned that one of the symptoms of Dercum’s Disease is Dementia I was frightened. I wondered how it would happen and if I knew that it was happening. Part of me doesn’t want to share this with you because it would sound like a cheap way to make people feel sorry for me.
Aside from my daily catatonic episodes, I’ve found that any type of thinking feels like hard work. Even writing this feels like a struggle to find the words and put them down here. I’ve never experienced the feeling that I would forgo day to day activities that I loved because the thinking was too difficult.
I first noticed that I could no longer play online multiplayer games because everything moved so fast. I used to love to play these games and now I have all the time in the world but I no longer enjoy them because it feels like such hard work to play them. Yesterday I wanted to play but had to give up after a couple of games and found myself exhausted.
Even trying to watch a new TV show feels like hard work. Having to learn the characters and keeping my eyes open. I tried switching to audio books but they are nearly as difficult to follow because I have such trouble concentrating.
Now I spend hours just listening to ambient mixes on Sound Cloud in a kind of haze. I spend my days running from severe pain any way I possibly can. I wanted to go to church Sunday but just couldn’t make myself do it.
I spend a good deal of time inside myself. The lights are on but no one is home. It’s peaceful there. If you see me like this don’t worry, I’m not afraid. One day, I will go inside and never come out. I don’t know when this will happen but when it does, I think it will be a good thing.
Writing this is very hard but I’ll try to keep writing` as long as I can.
For a brief time, I was Teaching Pastor as Liberty Towers Church in Sacramento, CA. I really enjoyed my time there. Pastor Terry, the staff and the people were so wonderful to me. Easter Sunday 2104 was my last Sunday to preach there and many people are wondering what happened.
The morning of March 24 was a very bad day for me. Besides being a very painful disease, I have other Neurological symptoms such as seizures, double vision, hearing loss and dystonia. When I awoke that morning I had seizures for about 2 hours and went to the hospital.
Dercum’s Disease (Adiposis Dolorosa) works in cycles. During an “Up” cycle I feel better, have less pain, few neurological symptoms and can be more active. These “Up” cycles last typically 8-12 weeks. The “Down” cycles well.. you can imagine what they must be. Lot’s of pain, lots of weakness, seizures etc. and they last much longer, typically six to nine months.
Each time I enter a down cycle I come out of it weaker than before. The disease is literally consuming my body. I have so many tumors we quit counting them. Yes, they cause pain but they interfere with many things in my body and there is nothing that anybody can do to stop the progress of this disease.
This disease is so poorly understood that the doctors really don’t know what the future holds for me. Perhaps the scariest part is the dreaded “D” word… Dementia. It is one of the symptoms of this disease but nobody knows for sure if or when it will happen to me. I always assumed that if dementia was happening to you that you wouldn’t know it but that is far from the truth. You are the one most acutely aware of what is happening to your body and your mind. Long before it shows up on any brain scan, you are the one who knows about the times when you were confused by simple things that were never confusing before. Have you ever experienced walking into a grocery store and then paused in the frozen food isle only to realize that you don’t know how a grocery store works? This sounds so bizarre it’s hard to believe but it happened to me. Of course, the effect was temporary.
My decline is slow and sure, like the sand on a beach being slowly washed away by the waves, sometimes better, sometimes worse. How long will this go on? No one can really say. According to the medical literature “The effect on mortality is unknown”.
In this most recent decline I have once again had to face the facts.
- I can no longer live alone
- I can no longer drive a car
- I am unable to care for my teenage daughter
- I am almost to the point where I will require nearly constant supervision
For me to live in Sacramento, I have to pay rent and hire someone to drive me around and assist me with things I need help doing. By moving to Fresno I can live with my mother and she can help take care of me. It helps me, and it helps her because I have disability income to provide for her. It is a win-win for my mother and I but at the same time very sad that I had to leave Sacramento and Liberty Towers Church which I loved.
The next time I get on a “Up” cycle, perhaps I can ride a train up to Sacramento for a visit.
“No weapon that is formed against you will prosper; and every tongue that accuses you in judgment you will condemn. This is the heritage of the servants of the LORD, and their vindication is from Me,” declares the LORD. Isaiah 54:17 NASB
As I took my walk this morning I listened to a podcast from one of my favorite bible teachers. This podcast was a repeat that I heard several years ago before I got sick with Dercum’s Disease (Adiposis Dolorosa). Something the preacher, who will remain anonymous in this post, said caught my attention in a way that it didn’t the last time I heard him say it. He said this.
“God has promised to protect us. [Quote Isa 54:17] God has promised to protect us, not in the moment, not just this day but throughout our lifetime a theme of protection.” – Anonymous radio preacher
This raises some questions for me.
- Is Isaiah 54:17 a blanket promise of protection for all believers for all time?
- What does God mean exactly by no weapon formed will prosper?
No Weapon Formed
The sword gleamed in the early morning sunlight as the executioner approached the prisoner. The blade was exquisitely sharp, he’d made sure that it would take just one swift strike to remove his head. The scuttlebutt around the barracks was that King Herod Agrippa I was trying to curry favor with the Jews so they would help him keep the radicals in check. One more screw up and Rome would be taking Agrippa’s head. Just yesterday soldiers went down to the temple area and found him. James was one of the leaders of “the way”, a follower of Jesus of Nazareth. A very close one at that, whenever Jesus wanted his inner circle he would call on Peter, James and John. Those sons of Zebedee were known as “Sons of Thunder” so the centurion thought it best to send a cohort to arrest him but when they found him there was no thunder. Now the prisoner rested quietly in the courtyard on his knees his hands bound behind his back. The executioner had seen people do many strange things in their last moments. Some screamed, some cried for their mothers, but this prisoner was unlike anything he had seen before. A strange calm, a peacefulness was written across his face. As the executioner approached, his eyes met the prisoner’s eyes for just a moment. Without a word, the prisoner lowered his head exposing his neck and with one brief stroke it was all over.
“Now about that time Herod the king laid hands on some who belonged to the church in order to mistreat them. And he had James the brother of John put to death with a sword.” Acts 12:1-2 NASB
What?!? That sword was a weapon formed against one of the servants of the Lord and it certainly seemed to “prosper.” What about the others?
They went on stoning Stephen as he called on the Lord and said, “Lord Jesus, receive my spirit!” Then falling on his knees, he cried out with a loud voice, “Lord, do not hold this sin against them!” Having said this, he fell asleep. Acts 7:59-60 NASB
Even stones used as weapons are prospering here. Is this the protection of the Lord?
“They were stoned, they were sawn in two, they were tempted, they were put to death with the sword; they went about in sheepskins, in goatskins, being destitute, afflicted, ill-treated (men of whom the world was not worthy), wandering in deserts and mountains and caves and holes in the ground.” Hebrews 11:37-38 NASB
In spite of overwhelming evidence to the contrary, believers love to quote Isa 54:17. The “No weapon formed” phrase appears in countless songs and Christian greeting cards as if to assure us that nothing bad will ever happen to Christians.
So what, you say… What’s the harm in that if it helps people to feel better?
Here is the harm. The fact of the matter is that there is a great deal of suffering on this planet and much of it is caused by weapons that do prosper. Bullets and bombs have destroyed Christians and non-Christians at pretty much the same rate throughout history. Disease and starvation have ravaged Christians and non-Christians alike and the Bible does not promise to protect you from any of it.
If you believe in this myth of protection when you are attacked, when your love one is killed or when you get sick and are not healed you will question the very foundations of your faith. This so called “promise of protection” is nothing more than a straw man setup by the enemy. If he can convince you that God failed to keep his promise of protection, then what makes you think that God will fulfill his promise of salvation?
What is God talking about in Isaiah 54?
“For a brief moment I forsook you, But with great compassion I will gather you. “In an outburst of anger I hid My face from you for a moment, But with everlasting lovingkindness I will have compassion on you,” Says the LORD your Redeemer. “For this is like the days of Noah to Me, When I swore that the waters of Noah Would not flood the earth again; So I have sworn that I will not be angry with you Nor will I rebuke you. Isaiah 54:7-9 NASB
Whenever I am trying to understand difficult passages of scripture I look to experts in the field and read what they had to say about the passage. Here is just one example of what I found.
After the Flood, in which God executed His anger against the world’s depravity, He promised never again to devastate the earth in the same way (Gen 9:11). Similarly God promised that the day is coming when He will never… rebuke Israel again. Statements like this show that Isaiah was speaking of the millennial kingdom rather than the return from the Babylonian Captivity, for the nation has suffered God’s anger many times since the postexilic return. – the Bible Knowledge Commentary
There will come a day when no weapon formed will prosper but that day is not here yet. That promise speaks of a future day in the millennial kingdom. If I run into a deranged killer today his knife, gun or bomb will most certainly prosper when he employs it to end my life. Sure it might make me feel better to believe that no weapon will prosper but believing a lie to feel better has never been a good idea.
An abnormal condition variously characterized by stupor, stereotypy, mania, and either rigidity or extreme flexibility of the limbs. It is most often associated with schizophrenia.
[New Latin, from German Katatonie, from Greek katatonos, stretching tight, from katateinein, to stretch tight : kata-, intensive pref.; see cata- + teinein, to stretch; see ten- in Indo-European roots.]
The American Heritage® Dictionary of the English Language, Fourth Edition
One of the more interesting effects of Adiposis Dolorosa on my body is that from time to time I become catatonic for short periods of time.
(It took me about 2 minutes to write that sentence because right after the word “I”, my body shut down for about a minute.)
Anyone who has used a computer knows that from time to time the computer becomes catatonic, unresponsive to keyboard or mouse commands. Sometimes, if you wait it recovers on its own, other times you reboot the computer. My catatonia is similar to this. It can strike at any time whether I am standing, sitting or lying down. Sometimes I will close my eyes and my head will droop as if my neck muscles went limp. Other times, my body will become rigid even flailing about as is common in seizures. If I am off-balance when it occurs I have been known to fall to the floor. My autonomous nervous system is at least partially functional when it happens because mostly I do not fall as happens in people with Grand Mal seizures when they become unconscious.
According to Web M.D. my seizures may be best described as partial simple motor seizures, affecting only a small portion of the brain where awareness is retained. When they occur, it takes a few moments for me to realize what is happening. Inside my mind there is a dialogue going on but it is a dreamlike state.
“What is happening… why am I? Oh it’s one of those seizures again… C’mon… wake up. Just open your eyes and move. I hope I don’t fall over. Wake up…”
(Then my mind drifts off into the twilight zone… as if I were in a dream.)
After a while (any where from a few seconds to as long as an hour) my eyes blink a few times and I’m back.
These catatonic states occur nearly every day. While writing this post I have had two of them. If you were with me when I had one of these you might not even notice it unless you tried to talk to me during the event. If I’m lying in my recliner watching TV you wouldn’t know, but I would come to wondering what happened during the last few minutes of the TV show.
There are other indications of brain injury from Adiposis Dolorosa. I developed double vision in January 2013 that has continued unabated to this day. Later I discovered that I couldn’t follow TV shows without the closed captions on. When my hearing was checked they found that I had moderate to severe hearing loss. I get involuntary muscle movements, jerking or spasms, (known as Myoclonic seizures) and my hands often twist into claws.
Some people have suggested that perhaps these symptoms are side-effects of the medications I take. This is certainly a possibility, but given the fact that these catatonic episodes and their frequency has remained constant over the last couple of years even though I have been on and off a number of different medications in that time, I suspect that medications are not the cause.
Once again, my current doctor has suggested that I be evaluated by a Neurologist, perhaps at Stanford University. I hesitate to do this because I have been evaluated a number of times and nothing has been discovered. This is not surprising because the effects of Adiposis Dolorosa on the brain and nervous system are so poorly understood.
In the meantime, I’ve learned to live with my condition. Nobody has demanded that I surrender my driver’s license but I suspect that it is only a matter of time. Presently, I have a caregiver who drives me most places and my daughter drives me as well. Losing my independence is a difficult thing, but there are good side-effects to it as I am rarely alone now which gives me time to enjoy the company of others.
Some people wonder, if I am so disabled, how can I write books, blog posts and work on a Masters program at the same time? The answer is that I’ve learned to work in between the bouts of pain and catatonia. This gives me much time for reflection and study.
I’ve also learned that there is good in everything that happens to me if I am willing to find it. It is so easy to focus on the bad, the wrong, the painful, but scripture calls us to think about better things. To cultivate a life of thankfulness. Those who are not sick are busy and preoccupied with the mundane things of life so they may never learn to do this. Sickness has been my tutor, teaching me to reflect thoroughly and to search out the deep things of life and so I’ve learned that I can indeed be thankful in all things, even catatonia.
“You have heard that it was said, Do not commit adultery. But I tell you, everyone who looks at a woman to lust for her has already committed adultery with her in his heart. If your right eye causes you to sin, gouge it out and throw it away. For it is better that you lose one of the parts of your body than for your whole body to be thrown into hell. And if your right hand causes you to sin, cut it off and throw it away. For it is better that you lose one of the parts of your body than for your whole body to go into hell!
Matthew 5:27-30 HCSB
This familiar passage came to mind this morning as I was reflecting on a quote from C.S. Lewis.
“You don’t have a soul, you are a soul. You have a body.” – C.S. Lewis
I think these two insights share a connection. Just as an iceberg is mostly underwater, most (if not nearly all) of us is invisible. Jesus made a remarkable statement in his comments about adultery and I think that perhaps our tendency to focus on the body and not the soul is the reason for this statement.
You have heard that it was said, Do not commit adultery (with your body). But I tell you, everyone who looks at a woman to lust for her (with their soul) has already committed adultery with her in his heart.
In other words, don’t comfort yourself by thinking that your private thoughts of adultery (or other sexual sins) don’t affect your soul just because they weren’t enacted by your body. The corruption wrought by sin has already taken place in your soul when your chooser (will) makes the choice to entertain adulterous thoughts. When your feeler (emotions) acts like a child and wants to feel (whatever that feeling is that adulterous thoughts provide) and your thinker decides that such feelings are harmless because of a technicality (they aren’t enacted), Jesus warns you that corruption is taking place in the soul.
Jesus then goes on to make dramatic statements about gouging your eye out or cutting off your hand. Most theologians understand these statements to be hyperbole (A figure of speech in which exaggeration is used for emphasis or effect). In other words, Jesus is not commending actual amputation of body parts to prevent sinning. Perhaps what Jesus is suggesting is that sin corrupts your soul the same way that gangrene corrupts your flesh.
Gangrene is caused primarily by a lack of circulation to the affected area. When the blood stops flowing cellular necrosis (death) of the tissue occurs. Once this happens, if the dead tissue is not removed bacterial infections will eventually lead to death of the body. During the US Civil War, death from cases of Gangrene were reported to be as high as 45%. This explains why they were so quick to amputate limbs when a soldier have a severe wound.
There is one curious treatment that shows remarkable promise for dealing Gangrene… maggots. More than 1000 years ago people figured out that if you put maggots into gangrenous tissue that the maggots would eat only the dead tissue and spare the living tissue thus saving the life of the patient. Middleton Goldsmith, a Union Army surgeon during the Civil War applied this treatment to over 300 cases with the mortality rate dropping to just 3%.
Do you suppose that sinful thoughts which corrupt the soul are the equivalent of Gangrene of the soul? Perhaps none of us will emerge from this life with an intact soul, even those who are saved and go to heaven will arrive with a soul shaped by the corruption of earth. Why do I think this? Because Jesus did not say “Go ahead and think your adulterous thoughts because you will be forgiven in the end and it won’t matter.” No, rather Jesus seems to be saying “Do whatever you have to do to fight your adulterous thoughts, don’t make peace with them at any price.”
There are disagreements among bible scholars as to whether or not a saved person can lose their salvation. Could Gangrene of the soul eventually lead to death of the soul? I’m not sure honestly but we should take Jesus warning seriously and take appropriate action. Even if Gangrene doesn’t lead to death of the soul, it will most certainly take a piece of it. Will God in his mercy restore the lost portions of our soul eventually? Perhaps… but if this process was easy and automatic I don’t think that Jesus would have given such a stern warning.
If adultery of the heart was a problem in Jesus’ day, it most certainly must be rampant today. Any one with an internet connection can access a mountain of pornography for free. This corrupting influence has begun to take its toll on a generation of children born since the creation of the internet. I believe it has also taken an extraordinary toll on the lives of believers no matter what generation.
Some of us have simply decided to accept adultery of the heart as a normal part of living in the modern world. Things that were once considered shameful are now joked about with uncomfortable laughter. I believe the Spirit of God wants to warn us about soul gangrene