Part One of a Four Part Series on the Third Anniversary of My Stroke
…And you must love the Lord your God with all your heart, all your soul, all your mind, and all your strength.’ The second is equally important: ‘Love your neighbor as yourself.’ No other commandment is greater than these.” -Mark 12: 30-31
This past year I have learned how important these words are. Heart, Soul, Mind and Strength. The stroke has affected all four of these in ways that were unimaginable a year ago.
This month marks three years since I had a debilitating stroke, August 25, 2018. This three-year stroke anniversary happens to be on our 37th wedding anniversary. I promised my wife at the beginning that I would not prioritize that occasion or focus on it on our special day. Therefore I decided to publish now at the beginning of the month and not the actual anniversary.
A year ago at this time I had pretty much given up. This is what I wrote at the time:
“I was confident that I would recover. I certainly did not picture myself in my current position. This month marks two years. I’m not sure if it’s the anniversary of the stroke or the frustration of living with the pandemic, or the fact that it’s just plain hot, but I find myself dealing with discouragement.”
Year Three has been the most difficult so far. Actually, what I went through in the early part of 2021 was worse than the actual stroke itself. I had no idea how difficult and painful the following months would be. I wound up being in the hospital five times in three months and in the ER more times than that. I vaguely remember portions of most of those visits.
It wasn’t until the last hospitalization that it was determined the medicines that were prescribed to heal were having the opposite effect. Physically, I began to have intense nerve pain that manifested itself in severe muscle spasms. At one point, the pain became so intense that I told Judy that if I had the medicines for assisted suicide, I would consider using them.
My mind had also been affected. Judy started noting unusual patterns of behavior for me as early as November. She decided to keep a notebook to chronicle what was happening. It was terribly distressful for her to see me exhibiting behavior not consistent with my character or role as a husband or church leader. I wasn’t doing anything blatantly sinful, but my attitude had become belligerent and combative. As far as I was concerned, everything felt normal with the exception of feeling that everyone was being was being excessively concerned about me and limiting my freedom to do whatever I wanted to do.
I began to do what none of us should ever do. I began to speak exactly what I thought and do whatever came to mind. My personality was magnified. I love Jesus and want to tell everyone about him, and I did just that. I interrupted people eating dinner at restaurants, I cornered strangers and told them about how God was working in my life. I was overly vocal in small groups (okay, I’ve always done that.) I was telling everyone about Jesus and using my blog as a launch point. What I did not realize was the fact that my writing was also affected, luckily, few people really ever went there to read. My altered communication skills is what alerted a number of you to reach out to my wife. “This just doesn’t sound like Perry.”
I like to debate and argue and I certainly did that. I still feel bad about the group of senior citizens that meet in the park with their dogs. One older lady told me that all Democrats were Socialists. I am not a part of that party but I could not let that argument stand. I actually followed her home along with the rest of the group to continue the conversation. Eventually someone told me in no uncertain terms that I should leave her alone and go home. Yeah, I was that guy.
It wasn’t just the negative aspects of my personality that were accentuated, positive ones were magnified as well. I champion the underdog and I always have, probably because I was one. I have a student that I’ve worked with for 12 years and hired him to work in our backyard. I promised him $100 a day for two days. The only caveat was he was not be allowed to use any profane language with the exception of “d***, s***, and hell,” or I would take $10 each time from his earnings. In the end, my mentee owed me $20. Instead, I gave him $1000 via Venmo. It was money that we could not afford to give nor had I discussed this with Judy. I will tell you the story of a miracle that came from that transaction in a later entry.
By mid-December, I began to not sleep even though I am on heavy-duty sleep medication. This pattern lasted for more than eight weeks, sometimes getting less than three hours a night. Some of my weirder ramblings were posted during this time.
As this entire thing was unfolding, I was confronted with an issue that dated back over forty years. I started seeing a counselor. The emotional toll of everything that was happening began to wear away at me. I began having a difficult time keeping personal details of personal issues to myself. The line between appropriate conversation and making people uncomfortable was, for me, blurred. Both my physical therapist and my masseuse decided to drop me as a client because they were uncomfortable. By mid-February, my argumentative/insubordinate behavior cost me my job. I had become an angry, unreasonable person. I wasn’t sleeping and my body was racked with pain.
After confessing that if assisted suicidal drugs had been readily available that I would consider it, along with the excruciating nerve pain I was experiencing I found myself again in the hospital on a 5150 (a possible danger to self) hold. It was Easter weekend and I used the occasion to talk about Jesus at every turn. By this point, I was not in control of my emotions or my judgment, and it manifested in a very dishonorable way. I am embarrassed to share what happened, but I believe it is vital to understand my state of mind.
The orderly assigned to watch over me was a very fit man with huge biceps and a tattoo that said “Jesus.” I identified myself as a pastor and asked where he went to church. He wasn’t very friendly. I was in need of using the restroom, but I was hooked up to the various monitoring machines, which meant using a plastic urinal. I asked the man to step behind the curtain for privacy, but he refused because I was considered a “fall risk”. I find it challenging and, most of the time, near impossible to urinate if someone else is in the room. I explained my situation, but he was not about to budge and became belligerent. I lost it. There was a small amount of urine in the container and I threw it down in protest. It was a very unwise choice.
Within minutes I found myself surrounded by nurses and orderlies. I was tied to the bed, and I became increasingly more belligerent. Once again, I was entirely out of my head and began to scream and spit. An attendant pushed my face into a pillow. The more I protested and yelled, the harder he pushed. I was in severe pain. At some point I simply gave up.Ultimately, they left me alone in the room, tied to the bed and double-masked. I cried out for water and was ignored . It was a pretty horrible experience, but I brought it upon myself. Those of you that know me well, know this is not normative behavior for me.
Within hours I was mostly back in my right mind. This scenario of going to the hospital with an array of symptoms (always a little different from the time before), and then recovering for a short period of time occurred a few more times. Finally, by trip #6 to the ER, my family had reached the end of their ropes. Judy and my son, Josh, took it upon themselves to push even harder for action. “Why are we back here every two weeks? Something is not right!” The two of them became my advocates in an even stronger way. Because they would not back down, it caught the attention of an internist and a neurologist, who then began to more deeply research my case. They ruled out bipolar disorder and schizophrenia and took a deep dive into all my medications.
After consulting with a seizure specialist, it was decided to wean me off a few of the medications I was on. The first was a prescription that I began in February, and the other one I had been on for three years. The end result is that I am back to normal. I have not exhibited any odd behavior (other than expected) and discovered that the long-term medication had been making me tired and weak.
I had set a goal early on after the stroke to walk from Main Street to the Walt Disney statue in the middle of Disneyland. Judy confessed that she thought I would never be able to do it. The truth is, I could walk about five minutes and then be exhausted. It really was a lofty goal. I am happy to report that I am walking at least a mile every day and walked 3 miles at the beach last week. This entire event was due to an interaction with the multiple medications that I had been taking. My state of mind is clear now.
Our family went through three months of Hell, and I was the conduit to get us there. What have I learned? Too much for this blog, but I am much more empathetic for those who seem mentally distressed. I promise the rest of this series will not be depressing. I wanted to get this out of the way so I can talk about other ways God has been moving in my life. I hope it is encouraging for you.