Nicholas C. Zakas
Jun 10, 2016 · 7 min read

My last day at Box was April 12, 2016. The day came and went quietly. No mass email saying goodbye, no celebration for a new chapter of my life. I had already sent out a few personal goodbye emails four weeks earlier, and I’m sure there were some who only discovered I had left due to an email bounce. This was the sad yet seemingly inevitable conclusion of the past couple years of my battle with Lyme disease.

When I joined Box in February of 2013, I was struggling with my health. I hadn’t yet been diagnosed with Lyme disease and was still going from doctor to doctor looking for an answer. Wanting to be upfront, I did what most would consider irrationally stupid: I told Box up front that I was having these health issues and that it wasn’t unreasonable to expect that, at some point, I might need extended time off to address them. Being completely honest is just the way I like to do business and while this information cannot legally be requested or considered by an employer during an interview in the United States, I’ve always believed that forming good working relationships requires this level of trust. And as a testament to the folks at Box, the few people I shared this information with (my would-be manager and my VP) assured me not to worry about it, that we could address anything that came up.

I made it through one complete year working in the office. I wouldn’t say I was handling it easily because I was physically struggling to get through each day. I also had several periods where I was just too sick to come in for a week and slowly I had to share with more and more of my colleagues that my health was failing (to explain why I always had doctor appointments to go to). Every single person, from top to bottom, was nothing but supportive. I worked hard to make up for the time I was missing and focused on high-impact tasks to make sure I was maximizing my usefulness. Then, I woke up one morning in February 2014 and felt horrible.

At first, I thought this “Lyme attack” (as I’ve now grown to call them) would run it’s typical course. I would tend to be knocked out for a week and then start to feel better the next week. I expected this time would be no different. I was wrong.

After about three weeks with no improvement, I started to panic a bit. You can never be sure how your employer is going to react when you disappear all of a sudden. I was in constant contact with my manager, explaining that things were just not improving. She said not to worry and to focus on resting.

Another few weeks went by and I was at least able to get up and work from home. I still felt very weak and nauseous, but I could at least be available via IRC and email, and do some decent coding. I eventually was also able to attend meetings via phone and get to a pretty high level of functioning so long as I didn’t have to leave my house. Working would take up all of my energy, so I couldn’t really do anything else, but at least I felt productive. Little did I know that this would become my life going forward.

I performed my job reasonably well from home for a while — I had set up some good foundations in the office that continued to run even without my presence. As a software architect, there’s a lot of coordination to the job, and that was more challenging than any other aspect. However, I managed to pull it off for a decent amount of time before the foundations started to crumble. That was to be expected, as a job coordinating with people really requires you to be around and interacting with people directly (especially when you’re the only one working from home).

Before I knew it, I had been out of the office six months. I was allowed to keep working from home because my performance, despite everything, was still good. I even got a raise during this period as part of our standard review cycle. At that point, I kept thinking I was getting close to coming back. Maybe just another few weeks or so. But then another six months had passed, and then another, and then I realized I was coming up on two years working remotely. Two years of being unable to go into the office and still trying to do my job.

During that time, my health continued to deteriorate (the “feeling worse before feeling better” aspect of Lyme treatment) and so did my effectiveness. While I had managed to continue in my architect role fairly well the first year, I started struggling mightily. An invisible leader isn’t really a leader, and there’s no direct feedback loop when things aren’t going well. How could I know that someone wasn’t doing what they had committed to? I’d have to rely on someone telling me. Who would tell me? Better question: why would they? I grew more frustrated as I started to realize I wasn’t able to do my job well.

As part of a larger reorganization in the company, my role was switched to allow me to work more independently. During that time, I focused on writing and working on ESLint with the company’s blessing. I might not have been able to do the job I was hired for, but I could still be a great brand ambassador for the company online. The thinking was that giving me this time (six months) would allow me to rest and heal, focus on things I enjoy, and then I’d hopefully be ready to come back into the office and resume my role as architect. That seemed like a good plan — I definitely thought another six months would be enough time to get better, and again I was wrong.

I was barely a functioning human being in February of 2016. My fatigue was extreme and I found it difficult to concentrate on anything. I was having trouble finding the energy for one phone conversation every few days. I told my manager that I felt like I had to go on medical leave. There was no point in continuing to fight through the symptoms only to do a lousy job at whatever I was assigned.

I started on medical leave in February and my leave ran out on April 12. At that point, my only two options were to go back to work or to leave the company. With my symptoms no better than they were in February, I realized that it was time for me to say goodbye to Box. I did so quietly, realizing that for many of my colleagues I had disappeared long before that day.

I am disappointed that my career at Box ended the way it did. The entire company was so supportive from the day I first joined. For two years, allowing me to work from home, adjusting my responsibilities where necessary, and giving me the time to rest whenever I needed it is really above and beyond the call of duty. I couldn’t have asked for more and this was much more than I could have ever expected. I feel truly lucky to have ended up at Box during what has been the most difficult period of my life. I only wish I could have accomplished more for them.

Since I left Box, I’ve primarily been resting and undergoing treatment. I’m currently on California state disability and hoping I’ll be able to go back to work before it runs out. My doctor thinks it will take another 6–12 months for me to be healthy enough to go back to work part time, but as I’ve learned, estimates are just guesses (no one guessed that I wouldn’t feel better by now two years ago). So, to use a sports cliche, I’m just taking things one day at a time.

The past few months have been hard; I define a “good week” as one where I’m able to get out of bed two days. This is the first time in months that I’ve had the energy and mental clarity to write more than a few paragraphs. I’m hoping to continue writing both to track my progress and as a form of therapy (writing has always been therapy for me), it just likely won’t be very frequent.

I’m not sure what’s next. Being too sick to leave my house for two years was never part of my ten-year plan, so I’m not really sure where I’ll go from here. This is the first time since I began working that I don’t have a plan for my career, and that’s frightening. My plan for my personal life has been on the shelf for quite a while now, so that’s less of an immediate loss. I’ve made a pact with myself not to worry about anything other than what’s happening today. There’s no point in trying to plan or worrying about the future until my health is restored.

In the meantime, I’ve found some significant peace in my daily routine. I’m optimistic that I’m still going to better and that, one day, I’ll have a tremendous story to tell me kids and grandkids about how you can never give up. It took me 16 years to figure out what was wrong me, another 2–3 years to actually get better doesn’t seem like too bad of an investment.

Lyme Disease Warrior

Personal experiences about battling Lyme disease

Nicholas C. Zakas

Written by

Creator of @geteslint. Author. Speaker. Philosopher. Boston ex-pat. Currently fighting Lyme disease.

Lyme Disease Warrior

Personal experiences about battling Lyme disease

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