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Varicella Zoster Virus (VZV) Lived Experience – Shawn’s Story

I woke up with pain in my eye.

I usually do not have pain in my eye, unless I stick something in there.

I hadn’t, so I thought I’d better pay attention to what was going on. The pain was severe enough that I felt it warranted a visit to the hospital in the hopes that they would be able to figure it all out. As the doctor examined me, he had no idea either. He told me he was going to check my eye for herpes. I have to admit, I had never heard of such a thing in the eye.

I was relieved to hear him tell me that it didn’t look like I had eye herpes. Unfortunately, we didn’t know what was causing the pain. In the end, he had to send me home with some medication for pink eye. He told me he didn’t think that would solve the problem, but there wasn’t much else he could do.

Four days later and after a visit to the optometrist, I still didn’t know what was going on until my wife turned to our customary doctor, Dr. Google. By this point, I had sores all over my forehead, and my eye looked similar to a cantaloupe that had lost a fight. It turned out Dr. Google had photos of people who looked like me, and I had shingles in my eye. It also turned out that shingles is the herpes virus. I did have eye herpes. Another visit to the doctor confirmed Google’s talent for diagnoses.

I didn’t know what this meant for life or work or anything, but I soon learned that shingles in the eye (or “Eye Herpes” as the well-informed call it) is a pretty dangerous thing. It can cost someone their sight.

I am a pastor in my church, and when they heard what was going on, they quickly jumped into action. The board stepped in and took all my responsibilities off my shoulders for a few weeks. I thought that was overkill as I figured I’d be back at things in no time, but I didn’t know what was really going on inside me.

All I knew was I was suddenly on medication for shingles and had some pretty powerful pain medication to combat the pain in my eye. The next morning as I sat at the breakfast table with my wife, everything changed.

As we finished breakfast, I could feel myself growing tired—quickly. I told my wife I was “fading fast” and started to put my head down on the table. Everything went black, and then the next thing I knew, I could only see plaid. Perhaps this sounds strange, but it was as if there was a sheet of many interwoven colours before my eyes. I could also hear sounds, but none of them made sense to me. As I reflect back on that moment, I think it was that time after a seizure when someone is confused. I could see and hear, but could not understand any of it.

When I came to, I was sitting up in the same chair as I had been before my plaid-experience, and the room was in a panic. My wife was on the phone and calling out to my oldest son to get the front door open. I instantly realized that I had not just taken a nap, but whatever had transpired was serious enough for my wife to call an ambulance.

I had never ridden in an ambulance before. With that being said, I had never stared at plaid right after a seizure, either.

At the hospital, I had three doctors trying to figure out what was wrong with me. Two of the doctors did not believe I had suffered a seizure, but that I had experienced a reaction to the pain medication (shout out to Eye Herpes).

The problem I faced as a result of this incorrect diagnosis was that the effective pain medication was then taken away from me. One of the doctors, however, was convinced I had, in fact, had a seizure. I learned that if you have a seizure, you lose your driver’s license, so I was pretty upset at the one doctor for not listening to the other two.

I guess I felt a diagnosis should be determined democratically. I didn’t want to lose my freedom to drive. It seems silly now, as I look back on that day, but I didn’t realize what was going on inside me. I also did not know how much I needed a doctor to recognize my symptoms. The doctor whom I didn’t like, due to her ability to recognize a seizure, wasn’t very communicative. She wouldn’t tell me what she was thinking but instead announced I needed to be on an IV drip.

Afterward, I was able to see that she was heading in the right direction, but at the time it was all a mystery to me.

The next day she had me undergoing a CT Scan, and the day after that I was visiting the Urgent Care Neurological Centre in London, ON. The neurological team in London all concluded that I had, in fact, experienced a seizure, and they wanted to do a lumbar puncture on me.

First, let me say that I did not enjoy the lumbar puncture experience.

Second, let me say that I appreciated the fact that they did not show me beforehand that the needle was just about the same length as the Eiffel Tower is high.

Somehow, they managed to keep that thing from poking out my navel. With the over-sized needle they used, some of my spinal fluid was removed for testing. I was impressed with the team of doctors and residents there. I have nothing but good to say about them regarding their care for me that day.

Upon examination of my spinal fluid (they don’t give that back, by the way, which I felt was highly inappropriate), it was determined that I had encephalitis, myelitis and myeloencephalitis. I think they just made up the third one. Once you get past seven syllables, it’s all just fiction.

The next day, I sat in an isolation room in the hospital. Since I had shingles, I was contagious, and they wanted to be careful. It is a strange feeling to realize that you are in a room specifically designed to protect the rest of the world from you. In hindsight, I was able to see that being in an isolation room was also helpful as I needed a place with very little stimulation to help my brain settle down a bit.

They started the treatment for encephalitis almost immediately. As I lay there in my bed, day after day, I couldn’t do much beyond think a little bit and hurt a lot. I spent a lot of time praying. I was also starting to come to grips with the realization that I might not make it through this experience.

The doctors weren’t telling me much. They knew I had encephalitis, but they really didn’t know much beyond that. I was getting the treatment I needed, but they couldn’t see the end result (Spoiler Alert: I survived). I found I couldn’t read for any length of time and learned that texting hurt my head. I realized as well that staring at the walls of the isolation room was far too dull for my liking.

The one thing I could do as I lay there was type. I decided I would write a bedtime story for my sons. I had, in times past, made up stories before bed for my sons, and I thought it would be fun to type one out for them. To be honest, I wondered if I would get to read it to them, or if my wife would be reading it to them in my place after I’d passed on. I didn’t know much of anything at that point.

Creating a story was a great outlet for me as I lay in the hospital. I have since found out that writing is a decent form of therapy, for which I am thankful. The story grew into a full-length novel, and then two sequels grew out of that story. I have enjoyed writing children/young teen novels, and I am looking forward to the first one being published this spring.

I struggled with some fears as I lay there in the hospital.

First, I knew that the encephalitis was renovating my brain on one level or another. I wondered who I would be on the other side. I asked my wife repeatedly to tell me if, after all was said and done, I was a different person. She said she would. Unfortunately, my memory is no longer what it was, so she may have told me or maybe not.

One of the other struggles I faced as I lay in that bed was the issue of my own mortality. I had been fairly healthy up till that point, aside from a few ups and downs. I spent a great of time in prayer over this matter. I did not struggle all that much with fear of death. My faith in God is strong, and I trust him with my life and death.

As I lay there, I realized what I struggled with was not fear of my own death, but fear for my family if I was gone. I didn’t want my wife to have to go through losing her husband. I certainly did not want my sons having to deal with their dad’s death or to grow up without me by their side. This was a hard matter to work through.

Part of this whole experience was how helpless I felt to deal with anything. If I lived or died, it was all out of my hands. In the end, I realized something about my faith in God. I realized that just as I believed I could trust God with my life or death, I could also trust him to take care of my family if I wasn’t around.

This was a monumental area of growth for me during that time. I was able to find great peace in that moment and in the ongoing trust. As the months wore on, I found that I wasn’t entirely the same person I had been. While I had been exploring and preparing to pursue a Ph.D. before my experience with encephalitis, I was suddenly dealing with some serious memory issues, a lot of trouble with concentration and enough daily naps to put a house cat to shame.

While I had been in great shape with loads of energy prior to this experience, I was suddenly gasping for air when I would walk up a small hill. Life changed significantly. I found many people, the medical world included, quickly try to filter encephalitis and my ongoing challenges through some more familiar conditions. I found that my struggles as a result of a brain trauma were quickly filed into various categories: inability to concentrate and heart palpitations must mean stress fatigue, need for frequent naps and an inability to sleep at night must mean depression.

It is hard for many to understand that my brain appears to be trying to catch up and figure out how to work again after a major cranial renovation. One of the challenges that I wasn’t prepared for as this journey has continued was the possibility that things could get worse.

I figured after getting out of the hospital, things could only get better, and I would get stronger and healthier. I have since learned that this is not always the case.

As I reflect back over the last year, I am beginning to realize that my memories are far from complete. There are gaps in what I can recall that are less than ideal. I continue to nap more than may seem healthy (I’ve made it up to five naps in a day), but I have learned that my brain is quite capable of telling me when it needs a break, and I must close my eyes for a bit.

I have continued to write as it has been such a joy for me and an opportunity to exercise my brain in a way that doesn’t exhaust me. I’ve been able to share my stories with many readers, and the first novel in my series comes out in early April. It’s silly and unusual, but so am I (that was a condition I suffered with prior to my experience with encephalitis).

One of the hard parts for me is that I have had to take an extended sick leave from my position as a pastor in my church. My hope is that I will be able to recover during this time. The church has been patient and kind and so generous through all the process, but I finally realized I was not getting better.

I needed the time to step back and heal for a bit. As I move forward, finding my memory getting worse and my exhaustion growing, I am quite hopeful. There is much I can no longer do as a result of the encephalitis’ battle with the cognitive side of my old noggin’, but there is much hope in future recovery, but also in a chance to experience new opportunities in life.

This experience has opened up many opportunities for me to encourage other people and to be a support to them.

I have learned to be more empathetic towards those who are dealing with health struggles. I have also found that through writing, I have had opportunities to connect with families in the community and to encourage some young writers as they seek to write novels themselves. This has been a real joy in the midst of the challenges.

I suspect I will need another nap, soon, so I should probably sign off. I wanted to thank Encephalitis International for the chance to share a little of my story. They do great work in educating people about encephalitis and providing helpful support. I have learned much from them.

I would like to thank my wife for her patience in helping me to remember… everything.

I would like to thank my church for the love and care and compassion they have shown to me during this very difficult time. I would like to thank my God for the peace and trust he engenders.

The road ahead continues to be a challenge, but I am filled with hope. There is much joy in the journey, much joy in writing and much joy in family. Shawn Robinson

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Page Created: 11 December 2023
Last Modified: 15 July 2024
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