If you’ve followed along here for a while or if you’ve ever been bored enough to scroll through the archives, you may remember that my kids and I have the summers off from our regular school schedule. For them that means sleeping later and then doing some parent-mandated tasks related to exercise and education (yes, we’re those kind of parents) before goofing off and being lazy. For me that means sleeping a little later, not running in the dark, and spending my days alternating between various art-making tasks. A significant portion of my summer involves preparing for the Summer Studio Sale. Art-making is a required part of my employment as research and creative development.
However, it’s still summer so whenever possible, the kids and I take at least one day each week to do something awesome. We had the “Summer of Waterfalls” when we visited 30 or so waterfalls in the region. I think there was the “Summer of Free” where we tried to do free fun things all summer. Some people accuse us of doing the “Summer of Beaches” every summer, but I’m not convinced we go to the beach as often as people think. I only spent a third of my summer there this year.
This summer got off to such a great start. The day after graduation I loaded up my truck and a van and spent a week at the beach doing the Sand Sculpture class. This was actually work for me---I’m not even kidding--- but it was also a very fun week. I had a wonderful group of students, and I enjoyed every single minute of it. Maybe you read that post. There was also a public sculpture installation and dedication. When the kids got out of school, we went on our family vacation to the beach. No bad days.
Violet has an early summer birthday, so when we returned from vacation, she asked for a kayak of her own. Kayaking is something we’ve done regularly for the last few years, and she was tired of having to float with me. A few days after her birthday we got the whole family out on the lake and had a great time together.
For that entire week I had a headache. Nothing would make it go away. At 4:00 am on Father’s Day I woke up with intense pain in my left eye. I’ve worn contact lenses since 7th grade, and I’m pretty familiar with eye pain. But this. This was a more serious pain. After struggling through this pain for a few more hours, I got up, put on my thick glasses and went to Urgent Care.
I don’t go to the doctor. I don’t take medicine. I have no family physician. This is difficult to explain to the Urgent Care people. The doctor on duty came in and looked at my eye. He asked a few questions and sent me away with some prescribed eye drops and instructions to go see my optometrist on Monday. I was still in a ton of pain. I spent the next few hours in a dark room and eventually decided I was hurting bad enough to bother someone about it. I texted my optometrist and because he’s a great guy, he agreed to see me on Sunday afternoon. He found irritation in my iris and gave me a different prescription for eye drops. Monday was pretty terrible. My eye felt like someone was constantly drilling into the center of it with a jackhammer. My eyelid, eyebrow, and forehead were tingling. On Tuesday morning I had a rash on the left side of my forehead. My optometrist texted me to check in. He said to come in right away so he could look at the rash.
Ocular Shingles was not something I had ever heard of before that Tuesday. I knew of old people getting Shingles on their backs, and they always talked about how terribly painful it was. But getting Shingles in your ocular nerve just seemed like something you’d only find in one of Dante’s circles of Hell. By Tuesday afternoon I had yet another set of prescription bottles in my possession.
I have only one memory of the next two days. I got up after G went to work, put on running shorts, and ran 3.1 miles. When I came back inside I think I showered before collapsing on the bed and falling asleep again. I did this Wednesday and Thursday. I’m pretty sure Blue thought I was dead one of those mornings because he was texting G while she was at work giving her the play-by-play of my actions. He was pretty concerned until I started moving again. The left side of my head was covered in lesions. I looked like a leper. It was terrible. If you like gross things, Google “ocular shingles”. If not, forget it and let’s just agree that I looked like a monster. My left eye was swollen shut--- at least that’s what was written in my sketchbook. I couldn’t keep my eyes open. I couldn’t stand light. I couldn’t wear my contacts. I couldn’t watch TV, draw, or read. Miserable doesn’t even begin to describe it. And that pain was still there, jackhammering into my eye. You never get used to that.
Despite having a blog, (where I can carefully filter the information I share with the outside world) I’m a pretty private person. “Hermit’s Head” wasn’t chosen as a blog title without reason. Aside from my immediate family and my optometrist, only one other human knew about this, and they felt it was important enough to visit briefly and bring some gifts to try to make me feel better. G and the kids were also doing their part to make things better. G didn’t want to bother me when I was able to sleep, so she made herself a bed downstairs and suffered through nightly dog snuggle attacks. The kids both laid low and kept quiet, which is a significant thing for people their ages during summer. They all brought me things and took over all the dog care responsibilities. I’m not really sure how or what I ate, but G made sure I had food and candy.
After two weeks of this I was able to watch a movie. I mostly watched through one eye but it was better than staring at darkness in a quiet room. We ventured out for G’s birthday, and that turned out to be pretty difficult. I felt like a vampire in the sun. I had to wear sunglasses all the time and since I was still having to wear my glasses, the sunglasses were worn over my glasses. I was a mess. It took a couple of days to recover from venturing out.
The lesions on my head had healed, but my eye was still the same. The same pain was still present every single day. My optometrist told me that there were some serious concerns with Ocular Shingles. There’s about a 50/50 chance you’ll lose some vision in the affected eye. The pain comes from nerve damage, and some people get regular sensation back in the affected area within 6 months. Others never get it back. The eye pain can last for several weeks leading the affected person to despair. I was afraid of losing vision. I could tell my vision in my left eye was cloudy. I couldn’t focus on anything with it. I couldn’t feel the surface of my skin on the front left side of my head, and I would get strange tingling sensations randomly. I had also lost a good two weeks of my summer; I wasn’t making art or preparing for the Summer Studio Sale. Despair was setting in.
The third week was all the same. I could draw a little at that point, so G took me to stock up on some canvases and paint markers. That way I could at least feel a little productive. I still spent most of my days in dark rooms cursing all things Shingles and Chicken Pox. My eye doctor worried enough about me to send me to a couple of new doctors. Each one sent me home with a new prescription and a new encouragement to “give it another two weeks and you should feel better”. My sketchbook describes the new eye doctors as “asshats”. I’m sure there was a good reason for that.
During week four the eye pain was getting worse, which was something I couldn’t even fathom as a possibility. You know how you deal with something terrible and say it couldn’t be worse? Well, it can get worse. Despair drove G and I to Urgent Care again to try to get something to ease the pain. We sat for 3 hours one afternoon only to be dismissed by the nurses because the doctor refused to see me. They apparently thought I was just there for painkillers. I think I was in too much pain to write anything mean in my sketchbook about that.
The next morning I was in the office of a medical doctor who listened to my summer story and immediately prescribed something to help with nerve pain. She told me it was still going to be a while before this pain eased and I needed to prepare for that. I prefer truth to empty promises. I didn’t write anything bad about her in my sketchbook. But remember that part about me not taking any medicines? Yeah. That’s important to remember now. Pain medicine makes me weird. I’m weird enough on my own, so I do my best to avoid it.
That night I took the first recommended dosage of the medicine for nerve pain. I went to bed and woke up at midnight with the worst pain I have ever felt in my eye. Excruciating doesn’t even come close to describing it. It was about a 76 on that 1-10 pain scale the doctors like to use. When I remember being awake I was already standing up holding my eye and apparently shouting some very not-nice words. Every muscle in my body was tight and I was blood red all over. It was pretty intense. Especially for G who woke up to me standing up shouting in the middle of the night. She was about 30 seconds from throwing me in the car and taking me to the Emergency Room. After about 10 minutes the pain went back to the normal jackhammering in the eye and a very confused and tired me got back into bed. Eventually I fell asleep again. I may have had some very strange dreams after that too. Apparently that medicine was not for me.
The mystery pain happened again the following day while I was drawing and then again that night. Very intense, but each one lasted a shorter amount of time. A new medicine was prescribed, a new bottle added to my collection, and it seemed to help a little. Meanwhile, I was still wearing my glasses every day – something I absolutely hate. I was still avoiding sunlight like Dracula, I was still having to be driven everywhere, Blue was cutting all the grass at the Plantation, and G had taken over as the “Fun Manager” of summer trying to get the kids out of the house as often as possible.
When week five arrived, it was the week of the Summer Studio Sale, and I had truckloads of work to do. I enlisted all the help I could get. The volunteers really stepped up to help me every single day. People were making things and cleaning the house. They were supplying me with all the materials I needed. They were getting off work early to help move furniture around and set up tables. They were postponing important things in their lives to help me. They were keeping the freezer stocked with ice cream. They were picking up my prescriptions. As Friday approached I honestly had no idea how prepared we would be for the sale. I think we were up until 2:00 am putting things out and pricing them.
It was week five that I started to gain some perspective about this summer. It was the end of July and so far our summer fun consisted of a week of family vacation and one kayaking trip. In the dark rooms and impatient despair I had only thought of how I ruined everyone’s summer by getting sick. My kids are wonderful humans and they both made light of the lack of fun by giving me a hard time about it…in a very funny way. G was quick to correct me and so were my friends. Physically and emotionally I felt terrible, but everyone around me was telling me I hadn’t ruined anything and that they didn’t mind doing all the things they were doing. It was a lot to process and slowly a feeling of gratitude started to wash over me.
Every day of this ordeal I continued to make my daily gratitude list. Even on the toughest days I managed to write 11 things I was grateful for that day. Even those two days I can’t remember I scribbled my list. I had been so encouraged at the start of the summer with ideas and plans. There was so much positivity, and then this door of pain and darkness slammed in my face. I had every reason, every right to be negative but I have to confess to you that I have never in my life felt so loved. The things these people did for me and the personal sacrifices they each made still staggers me to this day. My family and friends who you may just expect to step up in times like this really went the extra mile for me. And what about that optometrist who drove to his office after hours and on a weekend to see me? Who texted me every morning until I was better? Truly exceptional people. I pretend to be the Tin Man, but when I feel things I feel them very hard.
The day of the Summer Studio Sale my eye still hurt but I was able to wear my contacts until everyone left. The following week I made even more progress. I was able to wear my contacts enough to make a new sculpture in the studio. I also got to start driving again. My truck had sat so long the battery was almost dead. One night that week the kids and I went on a Walmart run, and they begged for a milkshake. I seized the opportunity to obtain their forgiveness for a summer of sitting at home in a dark house. I asked if I bought them both large shakes would they forgive me for not doing fun things all summer. $6.00 was a good deal for that kind of forgiveness, but of course that was just nonsense. There was nothing to forgive. There was only love.
This morning, more than two months after all this started, my left eye is still bloodshot. I can feel nothing on the left front side of my head except the occasional twinge of pain. My eye still recoils in terror when I walk outside. We’ve got a running joke in the family about how terrible the summer was. Blue told me this week that Taylor Swift wrote her song, “Cruel Summer” , for me. But honestly, while I’ll never forget some of the pain, I had to look back through my sketchbook to remember most of this experience. What I do remember is how people loved me, how they prayed for me, how they texted and called me. I can still see clearly. My vision did not change at all, and I’m grateful. I’m down to one medicine bottle, and I’m back to all my normal daily activities. I never missed a day of running.
So it was the “Summer of Shingles,” but it was also the summer of feeling loved, the summer of learning how to let people help me, the summer of family, the summer of friendship, and the summer of gratitude for all the wonderful people I have in my life.
Ocular Shingles left me with scars on my bald head that look like tiny leopard spots. Every time I see them, every time I feel that twinge of pain, I remember the love I received this summer.