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Keratoconus; (Still) Dancing in the Dark: A Follow-up Story

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This article is a follow up to one I had written over 2 and a half years ago. Groan with the title, right? Yet another the song reference. My first submission was Keratoconus: or Why I Wear My Sunglasses at Night. What can I say? I was a teen in the ’80s. During these figuratively dark days with Coronavirus upon us, a sense of humor can go such a long way to feeling well. Many people in the world must feel in the dark and uncertain about what is going to happen or what is happening now. Besides, it is also literally true at times. I do dance in the dark, especially on my way to the coffee maker in the mornings when my eyes are usually at their most painful and sensitive. Or is that stumbling and using my sense of touch? I certainly dance with my cats, in a dim apartment until my eyes can adjust to the light. They are not amused.

I dance (poorly, by the way) because, despite the pain, fear, and uncertainty life can be utterly beautiful. Dancing and singing (also poorly) bring me joy. There have been many changes in the past few years, weeks, months, and days. In my life and around the world. For just about everyone.

In 2018 I wrote about how KC affected me at that time. I wrote about the various treatments, mostly all the things I had to stick in my eyes. Ointment, contacts, drops. I wrote about my mom, who has always been a tremendous support. I called her my seeing-eye mom. Then she developed vision problems of her own, cataracts. I actually drove her, white-knuckled to her surgery, and follow up appointments. We did it as a team! Her vision is not great today. We now delegate a portion of the driving to my youngest daughter, age 18.

I mentioned getting the hybrid contacts that didn’t work out. Even with multiple fittings. Mistakes were made. By me. Very important advice to other gas permeable contact lens wearers that use a cleansing solution that contains hydrogen peroxide. ALWAYS USE THE NEW CASE PROVIDED. (Sorry/not sorry for the caps but I don’t want you to make the same mistake I did.) In my opinion, the packaging should contain the warnings in bold 18 point font. I used a case twice as I did in the “good old’ days” with regular contacts. Bad, bad, bad. What I did not know is that the cap of the case can build up with acid. A new case must be used to prevent any from entering your eyes after the lenses are cleaned. It must be done properly. Be very cautious with this stuff. While I likely only got a small amount on my fingers I temporarily blinded myself for almost a week. From residual acid in the cap. Excruciatingly painful and potentially permanently damaging mistake. I was extremely fortunate and recovered fully after a few weeks. (I had immediately sought medical care.) In the end, the hybrid contacts did not keep my eyes moist enough and had nothing to do with the mistake I made.

After the almost blinding myself incident I had another issue in 2018. I had gotten a summer cold, was super stressed out, and rundown after a crazy road trip. We drove from Florida to the DC area. It was a lot of fun, but I also had an allergic reaction to a common antibiotic. I was broken out in huge hives for the duration of the trip. I was really uncomfortable and oversensitive to the sun. A few days after we returned from the road trip I woke up in extreme pain in my right eye. It’s usually my “better” eye. I had stabbing pain, the eye was inflamed and my nose dripped like a faucet from all the tears. I made an emergency appointment. Anyone else gets cold sores? I have gotten them during times of stress on my lips for most of my life. To my horror, I was diagnosed with herpes zoster in my eye. (Common cold sores are caused by herpes zoster.) I was so embarrassed. I mean, that’s so screwed up. I was reassured that this is not unusual with KC. Yes, world! I had herpes - eye herpes! Like where have my eyes been? I have to laugh at myself or I’d cry. To clarify: eye herpes is not an STD.

Last year, 2019, I was finally able to afford scleral contacts. Even though they were deemed medically necessary I found out that my insurance does not pay for medical devices. It would help cover 80% of the cost of cornea transplants though, which makes no sense to me. Insurance and affordable health care is a big issue for many people in my country (U.S.A.). My husband kept referring to the scleral lenses as “squirrels”. He’s a funny guy albeit slightly nutty too.

Unfortunately, those did not work out for me either. I could see great with them but after a few hours, I paid a price. The price was irritated eyes for days to follow, even with extra fittings, new lenses, and continued hydration. The doctor who suggested I tape my eyes shut at night also said I should try to sleep with them in. I have not. I can see his reasoning to try to keep my eyes hydrated while I sleep but was too afraid of this suggestion. If they didn’t work during the day with continued hydration, how would they work at night? Maybe I should have tried it but I didn’t. I have since followed his previous advice, discarded some of my fear, and have taped my eyes shut while sleeping. Sometimes if one eye is particularly sensitive to light, and is in pain I’ll tape that one shut for awhile too. I have lost a few lashes, but it’s worth it to keep my eyes protected. It gives them a break and gives me relief.

I’ve become a complete klutz. I’ve walked into people, doors, holes, a glass door, a live deer... (no kidding.) There’s an issue of looking for things. Something or even someone can be right in front of me and it all just blends. If I don’t respond to a wave it’s because I have no idea of who it is or if someone is even waving. Then there are the prescription glasses, layered by reading glasses and sunglasses. Often all three at once. People laugh, it is totally funny looking, but it is the only way I can see my iPad screen, phone screen, or watch a show somewhat clearly.

Despite setbacks, I still traveled. Last year alone, I went to California twice to see my grown children. I went to New York City in December with my mother and the youngest daughter, Isabel, who had recently turned 18. We got to visit relatives and play tourist.

When I got to California my eyes were tired from the trip. The air on planes seems so dry. I do carry an eye mask, drops the whole care kit but find it hard to fall asleep. This means my eyes are not resting enough. I wish I could just sleep anywhere as some people can. I am up and on high alert when traveling. Like I think I can take control of the plane if something goes wrong? (I’ve think I’ve watched too many horror movies. Or the news. Take your pick.)

Tired eyes can lead to further compromised vision. While I was there my daughter, Sunny, was driving when I spotted a big black spider on her shoulder. I am not fond of close proximity spiders. We both had a freak out moment amidst laughter. She threw the spider in my direction. I screamed. She found the “spider” the next day. Hairball. I’ve made the opposite true too. I picked up what I thought was a piece of one of those brown paper towels. It was not a paper towel. It was a palmetto bug - which is a huge breed of mostly outdoor cockroaches. Just gross!

I can see the beauty in the world that I hadn’t seen before. I spotted a beautiful flower on the ground, near my home. It had bright yellow petals. I was going to bring it inside and put it in a bowl but upon closer inspection, it turned out to be a McDonald’s cheeseburger wrapper. I thought that was hilarious. Not that people litter but that my perception of the world has changed. I can see something as fearful or something as beautiful. It all depends on where my mind is at the time.

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Fast forward to April 2020: How Coronavirus AKA Covid19 has effected me.

Please refer to professionals for medical advice on the virus and Keratoconus. While I have this rare disease I am obviously not a medical professional:

I had a part-time night job across the street. I had to let go of my previous 6 am morning job I mentioned in 2018. Adjusting to light and finding rides became too much of a hardship. For about 6 months I was working both jobs for a while and rockin’ it, but my eyes didn’t like it at all. Besides, I have never been a morning person, even if that job had the very best coffee in my city.

The second job was at an Italian Pizzeria & Restaurant! Best pizza where I live in Clearwater, Florida! Family-owned operated and oriented. The most wonderful people. They made me feel at home. From the Northern accents (I am originally from New York) to the smells, and most of all, their caring nature. They became family too. The restaurant has so many “Snowbirds” or people from the North (typically Canada) during the winter. That also made me feel connected, since I went to high school in Northern Maine, on the border of Canada. Family. It’s part of the restaurants’ mission statement. The job kept me busy and connected. This was especially valuable since I spend half the year without my sailor husband. It helped ward off depression and isolation, which can be an issue for me since I was not going out as much due to my eyes.

The job exposed me to a lot of elderly people, travelers, cups, plates, sneezing, coughing, saliva... you get the idea. The restaurant maintains rigid cleaning procedures above and beyond Health Department Codes, so for a while, it felt ok. Especially when the standard issue was on the news was simply “wash your hands”. Constantly, of course, we did that anyway. I initially tried to work through it. My boss is also in a high-risk category, and one of the best bosses I have ever had. I was advised by my doctor not to work as I was at a higher risk of exposure and exposing others to the virus due to Keratoconus. I already had a sense of this, as I had been reading a few articles on www.keratoconusgroup.org. The business was slowing down due to the outbreak in my area and there was enough coverage for my position. Tampa Bay, Florida is now a hot spot and I think my state was the third area to be affected after Washington and California. To say I miss everyone there - from the regular customers to my fellow employees is an understatement. Just about as much as I miss my own family.

At the beginning of April 2020, I had another eye episode. Probably like everyone else, I was anxious, not sleeping as much. My ophthalmologists’ office had closed because of the virus. (Clinic with a team of Specialists.) They did have an emergency line set up for emergency cases. I called and explained my issue. Extreme pain, red eyes, tearing, history of having had eye herpes. They said yes, yes they would see me. The lady on the phone was so sweet.

I had to wait a few days, but I was relieved that I could even get an appointment. The day of the appointment I woke up at 4 am with a flair up, but by the time I had to leave for my 10:00 am appointment they had cleared considerably. It’s almost always like that. They need time to calm down.

When I parked in the clinic parking lot, I called them to let them know I was there. They instructed me to pull up to the front of the building. I rolled down my car window and a gloved, masked technician came up. He asked the questions that have become a medical standard these past weeks.

- Did I have a fever? - Did I have a cough? - Had I traveled outside the country in the past 30 days? In particular to China, Italy, or Korea?

He took my temperature with a laser. The reading was normal. I was instructed to go park my car again and wait for another phone call, telling me to enter the clinic. I did. I didn’t have to wait long. They told me exactly where to go when I entered the building. I breezed in. No one was in the waiting room. A lone medical assistant was at the reception desk. All the doors were opened. I didn’t have to touch a thing. All the doors were open. I was whisked into an exam room at once.

The exam itself was pretty standard except everyone was wearing a mask, including myself. I looked like a weirdo because I was wearing the only mask I could find. It was leftover from a dental exam and had an odd Joker looking smile drawn on it with a red sharpie. I am sure the staff thought I was nuts but I felt better with the mask on. It hadn’t occurred to me to use something else, like a normal plain old bandana. That wasn’t a widely spread tip on the news yet. (How quickly recommendations have changed!)

I was told that I had scarring on my left cornea and maybe a flare-up of (cringe again) eye herpes. Gosh - I am going to look up the medical terminology for that condition. (Didn’t help at all - Herpes Simplex Keratitis. Oh well.) My vision tested alright. I was prescribed an antibiotic eye ointment and an anti-viral pill. (A common one, not the one on the news that is being used to treat active cases of the coronavirus.) I was told I would have to take the medication for the rest of my life to prevent keratitis. I was ordered to go under quarantine. The doctor was quite emphatic about it. I was a risk, therefore, I might potentially put others at risk. I was told, “Stay home!” I’m incredibly grateful to have been able to get treatment.

I dropped off my prescriptions. The antiviral pill was not in stock. (Run-on meds I guess? Everyone is stressed out or making sure they have an adequate supply.) I imagine the pharmacies must be working double-time. I am glad they are staffed and able to run things smoothly. The medication was shipped to my home a week after I dropped it off. I’ve been taking it faithfully and have seen (literally) and felt quite an improvement. I’m just about back to normal.

My husband doesn’t quite understand that no, I can’t take a leisurely stroll in the neighborhood. Quarantine means quarantine. I wipe down things that enter the house. Food containers, packages, even the mail. Then I wash my hands for 20+ seconds afterward. This is not only for my protection but for my husband. He has an essential job as a Merchant Mariner. We cannot afford for him to get sick. He’s a critical part of fuel transport, which helps fuel the trucks that deliver food, medicine, and supplies. Isabel, the daughter who is in the class of 2020, divides much of her time between my parents’ house and my sisters right now. She has been attending class virtually and working as a cashier at a grocery store. Another essential job. She’s at higher risk as she’s out there, almost every day, helping people get the food they need. Shout out to her - my kids in the military (4), the ones working foodservice - and everyone with an essential or frontline job today! I am so proud of you! I am grateful to you.

I am proud of all my kids. The ones in college who have had to put their regular activities on hold. My grandkids now are being homeschooled by their parents. (What’s it like to be stuck at home all day? Is your mom a good teacher? I wonder.) Everyone has to adjust and adapt.

I do get worried. I do get anxious. I shift my focus so I do not stay in that state. I read a good book, slowly now. Pausing if my eyes get tired. Watch a show. Call a friend. Post funny memes online. I was delighted to find I could still thread a needle and sew. I avoid being glued to the news. I ask myself - what do I need to know right now for my safety and the safety of others? I’m already getting updates from all kinds of sources. The public school system, the City, the County, the State, the Governor, the President, the CDC, and WHO... and everyone in between. Panic is not a good place to be in. I was in a rush to get something done a few weeks ago and I cut my finger opening a delivery package. It wasn’t a bad cut but it was just enough to warn me to slow down, take a deep breath, don’t rush. I certainly don’t want to have to go to the ER or clinic and potentially expose myself or others because I needed first aid. I need to do my part and not tax the system. Accidents happen, obviously, but the more at peace I feel, the more focused I am. That lessens the chance of accidents. I strive to respond to situations with logic instead of reacting with emotion.

When I was a young woman I used to use the phrase “Spemque metumque inter dubiis” in my signature line. It is Latin for “ hover between hope and fear”, a Vergil quote. Yet today I am older and hopefully wiser. I choose to hover on the hope side as much as I possibly can. I don’t want to be in between or on the far end of the fear spectrum. That end is corrosive. It can cause my mind to go to worst-case scenario thinking, which doesn’t do anyone good. It’s bad for my physical health. Those stress hormones pumped into the body are not good for the immune system, the heart. Any part of me. I can’t afford to stay in a fight-or-flight mode when I don’t need to. I have to take care of what is right in front of me. That’s all.

Many of the things my grandparents (who had lived through World War II) have taught me has come back to me. All that advice I didn’t understand or even follow all the time. Wipe your feet at the door. Take your shoes off. Reuse. Repurpose. Clean, clean, clean. One of my grandmas was extremely fastidious about hand washing. She would take one look at the grime under my fingernails and yell “Go wash your hands! Do you want to go around looking like a rag-a-muffin?” I was a tomboy, always crawling through the dirt and climbing trees. I would often have to scrub my nails and wash my hands. Those words ring in my ears now and make me smile. All my grandmas are gone but each left a positive mark. Hand Washing 101 is just one of the gifts of wisdom passed down to me.

I have a slice of the outside world from my back patio. I can see the sun or the moon, and the birds. I take the time to listen. I love the owl that hoots from a nearby tree. I am growing tomatoes. I haven’t done that in decades. These are the gifts quarantine has given me. It has forced me to slow down. Pause. Think about the important things that life has to offer. What important things I have to offer. It’s not the things money can buy. Due to driving restrictions, I thought I was isolated before. That has nothing on this. Yet I’ve had time to reach out to people I love and care about. The people I have thought about so many times but got caught up in the rush of going from one thing to the next. I connect to people in new and different ways.

So that’s my update. A little over 2 1/2 years after my diagnosis. It’s still bumpy at times and that’s ok. Even if my eyes are not corrected right away, even this condition can be a gift. I am still looking for my artists’ medium. Perhaps by looking inwards with the heart instead of looking outward with my eyes, I may be inspired.

I think the best way to get through this crisis, along with taking the precautions recommended in my area, is the way I get through any hard time - by realizing I am not alone. The isolation is not what I’m used to during a crisis. Being with people makes me feel safe. I have to adapt to the changes. I might not hug, shake hands, or even physically see the people I want to, but I’m making more video calls, telephone calls, and writing letters. I can travel the world from home, somewhat as I did with books when I was young. I am not lonely, even though my heart longs to be surrounded by my kids and my grandkids. Logic, humor, (a) community, faith, hope, and love to get me through day-by-day. Moment to moment. Be well. Be safe.

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