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.