Guest Post: How Illness Made Me an Artist

By Lauren Watt

Six-and-a-half years ago, when I was 14, I got sick… I got sick, and I never got better. 

It began with a sudden onset of Mast Cell Activation Syndrome that led to me carrying an EpiPen everywhere. Everyday foods, smells, and chemicals caused me to flush, break out in hives, become nauseous and fatigued, have tachycardia, and in more serious episodes experience throat tightness and lightheadedness. Then five months after the severe MCAS began, I contracted a Urinary Tract Infection. I recovered from the UTI, but I was left permanently worse. We didn’t know it then, but the UTI had awakened my immune system to latent infections of Babesia and Bartonella.

After the UTI, new symptoms kept popping up every week. My hair began to thin, my joints ached, my head constantly hurt, I was often nauseated, brain fog set in, and I was exhausted and slept for hours every day. I became homebound and couldn’t attend school. I cried when it became obvious that my illness wasn’t going away in a matter of weeks or months, and I was only growing worse. I cried when the things I loved most, like choir, competitive public speaking, and mornings outside caring for my chickens and rabbits were no longer possible. 

I needed an outlet. I needed something I could do when there was so much I couldn’t enjoy—not even books, movies, or music. That’s when friends encouraged me to pursue adult coloring and gave me the supplies. It became an escape for me. I colored beautiful scenes, and I pictured myself in them. It was a needed distraction from my symptoms, and finishing a page gave me a sense of accomplishment.

Drawing in bed in 2020

I kept coloring until I couldn’t. My health soon declined to the point I was mostly bedridden, constantly nauseated, even weaker and more fatigued, and experiencing pain and swelling in hands—coloring became impossible. Things kept going from bad to worse. I was finally diagnosed with bartonellosis, after one year of being ill, but the antibiotic treatment and herxing were brutal. Eventually, I was left so weak that I was unable to even wash my own hair, and my digestion was so poor that I could only eat pureed foods and smoothies.

For years, the primary way I passed my time was looking at pictures. I was bedridden and used my phone to do Google image searches of animals, plants, and landscapes. It was a way to distract myself from the hell I was living. I cried almost every morning because I didn’t want to face another day of being in my body that felt like a prison cell. Looking at pretty pictures helped me to find some beauty and to think about things that were lovely, pure, and admirable when my thoughts could easily slip into despair. 

Finally, I began to gradually improve in 2019, and in 2020, I regained more strength and mental focus. I decided to start drawing, so my parents gifted me with colored pencils so that I could draw in bed. Draw I did, and much of my inspiration came from the pictures I’d spent hours looking at before. I drew pictures of landscapes, flowers, and birds, and my family made some of them into cards. Sometimes I could only draw for fifteen minutes at a time, but it gave me a sense of accomplishment and helped take my mind off my illness.

The completed picture from above

Then in 2021, a breakthrough came when I was diagnosed with babesosis. I’ve been treating Babesia for one year now, and I have made so much progress. When I’m not majorly herxing, I can take one mile walks outside and spend hours each day out of bed writing and painting. In October, I started a small online business, Lauren’s Easel, so that I could share my art with others and hopefully bring a little joy to someone else with my creations.

As an artist, I see life with a lens of looking for beauty in even the most broken things. Isn’t that what a mosaic consists of? And I try to live my broken life in a way that makes a beautiful mosaic, a mosaic that wouldn’t exist if illness hadn’t shattered the life I once knew. That mosaic currently looks like creating art for my online store, blogging, and encouraging others with chronic conditions. 

It takes courage to wake up each day, to realize that illness is not just some bad dream, and to find beauty and to try to shape the best life possible in the circumstances that I’ve been given, but it is possible. Life has thrown some very hard things at me, but looking back, I realize without chronic babesosis and bartonellosis, I wouldn’t be who I am today. I wouldn’t be an artist and a blogger, and I’m excited to see where the journey will lead to next.

So, my friend, please don’t give up. Try to find something you can do now, no matter how sick you are. It will help take your mind off your illness, lift your spirits a little, and might just lead to a defining moment.

February 2021 with a finished painting.

Thank you to Lauren for sharing her story! I, too, have found that having an outlet makes a huge difference in being able to cope with my illness. You can read more about Lauren, see more of her work, and buy her art from her store on her website, Lauren’s Easel.

The Bad Guys Are After Me: PANS-Related PTSD in Pandemic Times

It was 2:30 in the morning when I awoke to a knock on my door and opened my eyes to see a man in black standing over me. My heart pounding, my sheets drenched in sweat, I tried to scream, but all that came out was barely a mumble.

And then he was gone.

It wasn’t real… Or was it? I sat up and shone a flashlight all around my bed, and in my closet and bathroom looking for the intruder. How could I be sure it was a hallucination when I really did see a person in my room? How was I supposed to get back to sleep when I wasn’t 100% sure the whole thing didn’t happen?

For the last couple of months, I’ve had the same dream-hallucination over and over and over again: a knock on my door and a bad guy coming into my room. Sometimes, I wake myself up screaming, sitting bolt upright in bed. Sometimes, a knock on my door or a loud bang awakens me (which my family never hears, so I know it’s in my head). Worse, I sometimes have nights where this dream happens two or three or four times.

Any nightmare is by definition disturbing and can cause someone to wake up feeling upset. A nightmare that seems realistic is even worse. But a nightmare that continues into a hypnopompic hallucination is downright terrifying. What makes something a hypnopompic hallucination versus a nightmare is that you’re perceiving things that aren’t there after you’ve started waking up. Thus, they can seem very real.

And for me, knowing that, based on recent trends, there’s at least a 50% chance this nightmare/hallucination will happen that night… Well, sometimes I put off going to bed because of it.

Over the years, vivid nightmares and nighttime hallucinations have usually been a symptom of a PANS relapse for me. I used to go months between hallucinations, so if one happened again, I’d know a flare was coming. The scariest one I had (in the middle of a flare) a few years ago was waking up to a giant bear with sharp teeth and glowing green eyes snarling at me by my bed.

After a hallucination, I often feel the need to check my room for intruders once I’m fully awake, even though I know the person is almost certainly not real. My OCD loves to come in to say, “But what if it is real this time?” And then: “Are you sure you checked everywhere?” So sometimes I have to go through the checking process again. During the day, I have the insight and willpower to ignore these types of OCD thoughts, but in the middle of the night, it’s really difficult.

I’ve been told by therapists that I have PTSD as a result of my medical ordeals.

I’ve worked through some of it in therapy, but I don’t know if I’ll ever get over the feeling of being assaulted by my own body, my illness mangling my brain and mind, stripping away who I thought I was. In some ways, it was almost more traumatic when I got better, because then I regained the insight to understand how far gone I’d mentally been. Even after writing ~250,000 words on my blog and in my upcoming book, I still don’t think I’ve fully captured the terror that is PANS, or Basal Ganglia Encephalitis.

I believe the recurring nightmare is a metaphor for my encephalitis. The knock on my door is the virus that triggered it in the first place, and the bad guy is the rogue antibodies that came into my brain. The antibodies assaulted my mind by way of my brain, just like a bad guy attacking someone in their own bed. I spent years trying to recover and heal from the damage of my illness. No one should be surprised I’m a little haunted.

I’d had a long stretch without the nightmares, until after I had a flare last month. They didn’t happen during the flare––only after it, when I had to sit with the idea that the bad guys had visited my brain yet again. Fortunately, a few days of Prednisone completely calmed the symptoms of the flare themselves. But steroids don’t do anything for emotional distress that isn’t directly caused by inflammation.

I had a couple of good weeks recently without nightmares…

But now the dreams have started up again.

Watching COVID cases skyrocket due to the new variant, it feels like the bad guys are coming for me. Some people are even saying getting infected is “inevitable.” The bad guys are coming no matter what I do, I think to myself. They’re just waiting for me to get sick so they can come kidnap me again.

The other day, I found myself wondering why I was having nightmares again and also feeling a strange sense of impending doom. Was this another flare? But then I realized… There’s been an effing global pandemic for two years, and things are about to get really bad again. And for two years, I’ve had to watch and listen to people say they don’t care if people like me get sick and die. I’ve had to hear that I’m an acceptable casualty because someone’s “right” to not wear a piece of cloth is more important.

Why am I so anxious about getting COVID? I likely didn’t mount as robust a response to the vaccine as a healthy person, although I finally made some antibodies after a third shot in September. The fact I already have Myalgic E. and dysautonomia puts me at high risk for Long-COVID and a potentially permanent worsening of my conditions. I have multiple years of experience where I get a mild or asymptomatic virus, it triggers the bad-guy antibodies, and I end up with debilitating neurological symptoms for months or years after. Hopefully being triple-vaccinated makes this less likely, but there’s not enough data to know for sure. I already barely function well enough to maintain a career. If I get any worse, I could lose it all.

But I try not to think about the pandemic too much.

My family is extremely fortunate that we can stay home. We’re pretty much not going anywhere for the next two months, or however long it is until the new treatments are widely available. No gatherings, and minimal trips to the store. The windows and doors are figuratively barred… Still, I worry that somehow the bad guys will find their way into the house.

But you know what? Right now, the bad guys in my room really are just a bad dream. They’re not here. I’m safe and as healthy as I can be as someone with M.E.. I have to focus on the here and now, and just take it one day at a time. I don’t have to get through the next two months all at once. All I have to do is what’s next, today.

I think we can all agree that ending 2021 with the worst COVID surge yet is not the kind of “bang” on which any of us wanted to end the year. But I hope you all are able to take every precaution available to keep the bad guys out of your homes as well. Let’s all hope and pray that 2022 is the year when we can all put the nightmare of COVID behind us. Let’s hope that the silver lining becomes better treatments for neuroimmune and post-infectious illnesses like PANS, encephalitis, ME, and Lyme. I believe this will be the case. We just have to keep hanging in there, taking precautions, and not losing hope for better times ahead.


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I’m Having a PANS Flare. Here’s What It’s Like…

SPLAT. Suddenly, I hit the floor.

Without warning, my legs completely gave out, as if they forgot how to listen to my brain for a split second.

Had this been the first time this ever happened, it would be disturbing enough. But this has happened thousands of times over the years, and that’s what makes it even more disturbing. It’s never quite been settled if I’m having atonic seizures or some kind of autoimmune neuropathy or something else. But one thing is for sure: I only get drop attacks when my brain is inflamed.

I got back up right away, and tried to brush off the experience. Sure, I’d also had some mood issues recently, which are one of my first signs of a PANS flare. But a higher dose of Lamictal had taken care of the moods, so maybe it was something else. I actually thought the drop attack from a couple of days ago was just a fluke… Until today.

Continue reading “I’m Having a PANS Flare. Here’s What It’s Like…”

Grad School Round 2: Conquering the Ghosts of PANS Past

A few months ago, I made a scary last-minute decision: I was going to re-apply to grad school, this time at “State University,” close to home. And today, I successfully got through my first class!

As many of you know, I did a year of grad school at a competitive program out of state before Myalgic E waltzed into my life and forced me to abandon my education, at least for a while. But this spring, after a lot of improvement due to a round of Rituxan, it started to bother me that I hadn’t finished school. I realized after two years away, it was finally realistic to go back, at least part-time.

But what I didn’t realize was the reality of going back to school. I didn’t realize how different it would feel after being in industry for two years and being three years older than when I started. But even more, I didn’t realize how compromised my brain is in more ways than one.

Like many schools, mine required entrance exams, which were online this year. I petitioned to be exempt since I already had a year of grad school behind me, but the school came back and said they would use a shortened version to determine if one of my classes would transfer or not. So there I was, with a week until the exam deadline, trying to relearn material I hadn’t thought about in four years, since undergrad.

But no sooner had I got out my old class notes from undergrad that the ghosts of PANS past came back to haunt me.

Homework

If you’re new to my blog, then you don’t know the disaster that was the last semester of college. My encephalitis started to come back the week before classes started, and it just got worse and worse from there. My brain was so inflamed that it took multiple weeks of IV steroids to come out of it! Rather than reinvent the wheel, I’ll share a paraphrased excerpt from the book I wrote about succeeding in college with a chronic illness that gives a tiny sense of why that semester was so hard:

Although I had been physically in class every day that semester, it was truly as if I had been gone for the first two months. After I ‘returned,’ I had to re-learn all the material, starting from square one in some areas. My professors had graciously removed all deadlines of assignments for the rest of the semester when I told them what was going on, and that’s the only reason I didn’t outright fail.

However, my ability to read, stay focused, and figure out how to break down tasks into smaller, manageable steps were always some of the last aspects to improve after an encephalitis relapse. Getting through the rest of that semester would mean scaling a mountain with two broken legs and two badly sprained arms.

To this day, I have nightmares that I didn’t finish catching up on all of the assignments I missed in that last semester. I have dreams where a professor informs me that I didn’t actually graduate, and I have to go back and take the hardest class of my major again. For a long time, I couldn’t believe I had really pulled it off, but I also did my very best to forget what that semester was like as soon as I finished writing my (yet to be published) book.

But the other week as I studied, it was impossible to forget. There in the lines of my class notebook from that semester, you could see plainly the decline in my handwriting from the first day of class to right before I got steroids. (A decline in handwriting abilities is a hallmark symptom of Basal Ganglia Encephalits, aka PANS.) And then you could tell when I got the steroids, because then my handwriting was neater than ever. It was eerie in an intimate way that re-reading my blog never has been.

Again, I tried not to dwell on that semester too much as I studied the material in the notebook. But a couple of days later, when I went to take the exam, it came back to me yet again.

Before I even started the test, I was shaking all over, and my heart was starting to pound. I told myself I would do fine because of how hard I had studied, but it was no use. As soon as I opened the test, I completely choked and couldn’t remember anything. Then I was in a true panic attack, having a meltdown all over again, just like I might have when my brain was inflamed.

Test-taking anxiety (at least to that degree) has never been something I struggled with. This was a trauma response. This was my body remembering all of the pent up fight-or-flight that I constantly lived in while facing PANS and trying to get through college. This was remembering the times when I was fighting to use every once of strength just to show up to class. This was feeling the pressure again of being in one of the hardest majors of the university while also horribly ill.

Time and time again, even three years on from the last time I felt like a PANS patient, I realize how traumatic the whole thing really was. I didn’t realize that at the time because I was just trying to get through, and my brain was too inflamed to understand. It was after I started to improve that I realized something very terrible had happened to me, and now I was going to be spending who knows how long trying to get back all of my “self.” PANS is an invisible trauma that’s impossible to understand until you live it.

It’s no wonder that so many things related to that time in my life will still evoke a panic attack.

Nevertheless, I was able to calm down enough to get through the test. And I did well enough for them to accept my credits!

Understandably, I was nervous about what other school-related triggers I might have, but I showed up to class this morning and didn’t panic. Actually, I enjoyed being in class again. Showing up on Zoom isn’t something I ever had to do in college, so maybe it is different enough not to trigger me. Maybe if I get through this semester, I’ll be able to go in-person eventually without panicking, either. It’s okay if you have to slowly work up to doing whatever it is you want to do. It’s okay that I have to go only online and take only one class at once.

There’s a lot messed up in the world right now, but I just wanted to share this victory of coming back to grad school after M.E. tried to stop me, and despite my PTSD. I don’t want to say “if I can do it, anyone can,” because we’re all unique and that’s not true. You can do things I can’t and vice versa. But I hope that maybe knowing that I have been able to go back to school after all that I’ve been through can be a ray of hope for anyone struggling or worrying about doing so themselves right now.

Expectations vs. Reality: Why “Different” Doesn’t Mean Worse

A few weeks ago, I became the last of the adult kids in the house. And now it’s just me and my parents. Just me, the disabled and sick 26 year-old, and my parents, whose almost-retirement years I can’t help but feel guilty for fifth-wheeling sometimes.

My friends are getting married and having babies. My friends are working jobs full-time, some of which are dream jobs and some of which they hate. My friends can do “normal” things, like maintain their own apartments, go to the store, and go on hikes in their free time. And then there’s me. I live with family and haven’t been able to go on a proper walk in over two years. I just lost an entire week of work because I was in another ME crash that left me too sick and weak to sit up. I might like to find a partner someday, but if I’m honest, I worry no one will want me if I stay this sick.

Every time I have a bad ME crash, all of my worst fears about my future and deepest insecurities about the present come rushing back. In the hours when I’m in pain all over my body, completely exhausted, and hooked up to an IV, I start to think maybe this is all my life will ever be. I forget everything I’ve accomplished and everything I am apart from my illness––and I am so many things besides sick.

Continue reading “Expectations vs. Reality: Why “Different” Doesn’t Mean Worse”

My Experience with the Moderna COVID Vaccine as a Neuroimmune Patient

Ever since the beginning of the pandemic and the first mention of vaccine development, there has never once been a doubt in my mind about whether or not I would take it when available to me––of course I would get the shot to protect myself and those around me.

That decision may not seem noteworthy to most, but for me, as someone with a neuroimmune condition that can be triggered by vaccines, many people would say I had every reason not to get vaccinated. But considering only the theoretical risk of a vaccine without considering the benefits is short-sighted and irrational.

Continue reading “My Experience with the Moderna COVID Vaccine as a Neuroimmune Patient”

When What You Fear Most Is the Right Decision…

I’ve done something scary: I re-applied to grad school. 

Two years ago, I left grad school not completely by choice, but out of necessity when I was diagnosed with Myalgic Encephalomyelitis. I’d spent that year in grad school living in a completely new part of the country by myself. I’d had a great assistantship. It was all very hard at times, but I learned so much in that year.

So that summer, to become so ill was shocking and devastating. It didn’t compute that I could no longer drive, put away groceries, walk to the mailbox, or even load the dishwasher by myself anymore. There are no words to describe how devastating it feels to become fully dependent on your family at age 24, after having lived by yourself for five years. 

In the physical and emotional state M.E. put me in, there was absolutely no way I could have safely resumed school.

While in the thick of PANS, I had always pushed myself to go back to college every semester even in the worst of times, even when a lot of me thought I couldn’t possibly make it. I had always powered through, consoling myself by knowing that staying in school meant I was still moving forward in life. College had been my anchor to reality and normalcy when I couldn’t otherwise recognize myself or my life due to the brain inflammation. The structured nature of college kept me going.

But this time, it was different. 

While in the worst of PANS in college (except when it showed up as anorexia), I had retained my physical stamina. In fact, I could run ten miles at times when I struggled to put together a sentence. But now that I had Myalgic E. instead, I was so frail that I couldn’t even do five sit-ups without getting ill for a week afterwards. 

My doctor warned that I would permanently worsen my condition if I tried to go back to grad school. I hadn’t wanted to hear it because I thought I could hang onto grad school the way I hung onto college. 

But one morning, it finally all came to a head when it took me four hours to get out of bed because all I could think about was how overwhelming and impossible it seemed to go back to grad school in three weeks. My mom finally came and dragged me downstairs, but I just started sobbing.

“I can’t go back,” I moaned. “I don’t think I can do it.”

“Then don’t.”

I paused, contemplating such a profound statement. But how could I not go back after I’d aced college even with brain inflammation? How could I give up now? And yet I knew she was right, and I knew how relieved I was to think about not going back.

“Maybe I should just transfer to [state university] next semester so I can keep living here,” I said, almost joking.

“That’s actually a good idea.”

I paused, realizing that transferring in grad school, though unorthodox, was a real possibility. “But how could I go there after I’ve gone to [first grad school]?” I countered. “It won’t be the same.”

“Do you want it to be the same? Do you want to be so depressed about going back that it takes you four hours to get out of bed?”

“But,” I started, staring at the floor. “I worked so hard to get there. For years, I tried to do everything right so I could get in.”

“I know, and you earned it. But [state university] is a great school, too,” Mom reminded me. “I think you know you’d have a great experience there––after you’re well enough.”

That afternoon, I finally accepted my circumstances and informed my university that I would not be returning due to my illness.

The thought of transferring to the state school someday and having more family support during school buoyed me. The idea helped me see that my original grad school didn’t hold the only keys to my future.

After I left grad school, I learned that sometimes the thing you fear and dread the most is exactly what you need to do. 

Over the last two years, there have definitely been plenty of times when I’ve felt sad about leaving grad school unexpectedly and not finishing my degree. However, not being in school opened up lots of professional opportunities I would have had to turn down if I had stayed in grad school. In my time away from school, I feel like I’ve found myself like never before. I work with a start-up part-time and freelance on the side as well, and I love being in industry as opposed to academia.

So why go back?

The way I see it, if I want to make the year of grad school I already did count the most, then I need to finish the master’s degree. I worked my butt off that year, so I want to earn that degree. 

Half a master’s degree doesn’t earn you much. I happened to be in the right place at the right time (and with the right expertise due to undergrad) to get in with this company, but usually, the top people in my field have graduate degrees. Every day, I’m working with people who all have more degrees than I do. I have wonderful colleagues who value me despite my lack of graduate degrees, but down the road, I will have more options with at least a master’s degree.

Moreover, there are some additional training and research opportunities that are unique to academia. It will be great to have the chance to learn more and get even better at what I do.

Why do I think I’m well enough for grad school?

I decided against applying for 2020-21 because I felt like my health wasn’t where I wanted it to be yet. But I’m optimistic about 2021-22 (and beyond).

Recently, I’ve made a lot of progress in my health. My resting heart rate has dropped to the low 70s compared to the 100s a year ago. The other day, I walked a quarter mile and didn’t crash, whereas the same walk a year ago caused a crash for three weeks. Mentally, I’m 70-100% every day. I regularly work for three or four hours without triggering a flare up. I’ve even been able to dramatically reduce two of my three psychotropic medications! 

I am feeling hopeful and starting to dare to imagine being able to do things like go for a walk every day or do my own housework. I believe I can go to grad school part-time without causing harm.

This time will also be different because I can keep living at home. Continuing to have my family’s support will make a huge difference. 

Taking my own advice to heart…

Something I advise in my upcoming self-help memoir on college and chronic illness is that there’s no such thing as the best school in the country. The best school is where you can thrive both as a person and academically. And for any given person, that usually won’t be whatever school U.S. News has ranked the highest this year. 

So now I’m practicing what I preach in realizing that this school really is a better place for me to be at this time.

I struggled at my old school sometimes because everyone was just as good or better than me. On the one hand, it was stimulating to be surrounded by such smart people, but on the other, I would often compare myself and beat myself up for not being the best—and I never was the best.

But this new school has great faculty and is well-respected within my field, even though the name is not as flashy as where I was before. I will always be taken seriously with a degree from there, and I think I may get more attention in the new program. 

Final words of wisdom

April is often when people find out which colleges or grad schools they were accepted to. If you read my blog, you probably have a chronic illness or know someone who does. So I would like to encourage all of you to not be afraid to choose the school where you can be your best self, including health-wise and as a whole person. And also don’t be afraid to go to community college for a year or two so you can have some support from your family and minimize debt (I went myself!).

Don’t go somewhere only because it seems impressive if there’s somewhere else that will be a better fit for you. School is what you make out of it––the opportunities you find and create, the people you meet, and how you spend your time at school. What others think about the name of the school is far less important.

It might seem really scary to take some time off school to work on your health or turn down admission to a particular school, but sometimes it really is the scariest thing that ends up being the right decision…

How I Was Diagnosed with PANS When I Was 19

After weeks of waiting and hoping and worrying, the time had finally come for my appointment with the mysterious expert neurologist. My parents and I arrived half an hour early to a spartan waiting room with an almost-eery quiet. A single tub of building blocks and several stuffed panda bears made me wonder if the staff really understood that they had allowed an appointment for an adult.

Forty-five minutes later, this concern was allayed when the doctor emerged to call me back without batting an eye when she saw my nineteen-year-old self. But all at once, I felt my stomach do a somersault as it occurred to me that she could be my last hope. Eight years of misdiagnoses had led here. Could this surprisingly soft-spoken woman finally be the one to help?

Continue reading “How I Was Diagnosed with PANS When I Was 19”

When Good Memories Torment You

The other night, a horrifying realization jolted me awake: I haven’t rode my bike in over two years.

Suddenly, the memories came rushing back, and I imagined myself biking like I once did. I remembered how, in college, I would bike to errands and class. I remembered zipping around town with the wind in my hair. I remembered the long rides in the bike lanes and on the greenway, and my riding buddy’s incredulousness when I’d already run ten miles that morning and still was hard to catch.

Continue reading “When Good Memories Torment You”

PHP Day 3: “You Didn’t Fail.”

Today makes my third day of Partial Hospitalization, and I already know I need to stay more than a week—and I’m mostly okay with that, but not sure whether my body will allow it.

Looking back at the last few months, I’m starting to see that, as usual, my psychiatrist has been right in saying I need to be here. As it turns out, it doesn’t much matter why I’ve lost this much weight below my healthy place because I’ve ended up with the same physiological consequences and even some of the distorted thinking of anyone with an eating disorder… My hair was starting to fall out. Continue reading “PHP Day 3: “You Didn’t Fail.””