This is a bit of a different post, but I wanted to share my experience with a rare neurological condition known as Guillain Barre Syndrome (GBS) in case it might be helpful to anyone.

Specifically, I want to focus on my long road to recovery, transitioning out of the workforce and then back into it, and adapting to the new reality. Not all disruptions to work life are medical, and hopefully my story is helpful to others who must leave the workforce due to pregnancy, family issues, mental health, or any other number of factors.

First day of outpatient rehab vs last day of rehab

May of 2015, one year into marriage, I was a Senior Software Engineer doing WPF, Angular, and ASP .NET development at a small software as a service (SaaS) company.

I remember moving my hand to the faucet in the bathroom at work and noticing that it didn’t quite go exactly where I told it to. That was my first symptom. Soon after that I noticed numbness on the bottom of my feet and in my finger tips. Soon the numbness was expanding, I felt weaker, and I began to lose my sense of taste. Lifting my feet became difficult and I shuffled around like an elderly gentleman as a result.

Most of the team was out that week and we had production outage after production outage at the time (we were beginning to transition to the cloud for scale-ability and had yet to achieve success, though we soon did), so I hung in there, waiting for a doctor’s appointment later in the week.

When I finally went to the doctor, I could barely walk. He didn’t know what he was looking at and sent me home with ultrasounds scheduled for later that week to rule out blood clots in both legs.

The next morning I fell getting out of a chair after putting on my shoes and we got me to the hospital where I was eventually diagnosed with a rare and not understood nervous system syndrome called Guillain Barre Syndrome or GBS.

Put simply, GBS causes the body to attack the meyelin sheath of the nervous system, causing weakness as muscle signals degrade in strength, loss of sensation as signals don’t get properly to the brain from the limbs, and pain as random hot / cold / pain sensations are relayed by the damaged nerves.

There was a battery of moderately painful tests, procedures, and inpatient rehab stays as we waited out the symptoms of the condition and waited for my body to begin repairing the damage. After 45 days I was home again and on a leave of absence as I recovered and adjusted and began outpatient physical therapy.

By then I could get around on a walker, but any exertion was very draining. I spent my days watching learning videos on Pluralsight and keeping that mentality of software development as well as doing fun things like reading Andy Weir’s The Martian.

After a month at home, I had enough health to begin to work part time from home. Work moved me to part time while still on long term disability and I was able to contribute via code reviews for a new junior employee they hired to help bridge the gap in my absence. I couldn’t work long as it was quite draining, but I could contribute again and that meant a lot to me.

Another month went by and I was up to around a half day from home and getting stronger. My spirits were up from work, but I was still not able to feel my feet enough for my body to automatically balance itself, so standing was hard and I was unable to use a cane.

A month later I was working a full week part time and coming into the office once or twice a week (via various rides, primarily my loving wife). Better still, I could finally use a cane. That meant I had enough mobility to get around obstacles and even bend down and get things off of he floor or plug in cables. Additionally, the nerve damage impacting my face had subsided and I was able to smile again.

A month later, I was officially done with physical therapy and becoming more and more comfortable with a cane. Within another few months, I was working full time again, though getting rides to and from work.

It was 10 months from initial onset until I was fully able to drive again and get around without a cane.

Years later, my feet remain slightly numb on the bottom and still full of that hot / cold / pain static sensation, but the low level pain is not severe enough for me to want to continue pain management medication.

I can do everything I want to do, with the exception of standing for prolonged periods of time. Standing makes my foot pain much worse and my knee was injured during inpatient physical therapy (ironically enough). If you looked at me, you wouldn’t be able to tell anything was wrong at all and I’m fine with that. That’s what they call a “new normal” and if 10 months on the sidelines and some pain and weakness are all the price I pay, I’m okay with that.

I did eventually leave that job, to become a team lead and later an engineering manager. While it wasn’t exactly due to the GBS, I’m not sure my old organization could have seen me in a leadership role role despite my experience and skills since they’d also seen me clinging to a walker and unable to smile.

So, interesting story, but how does this apply to all of us as engineers?

Well, for one: Don’t give up. Keep trying, keep pushing yourself, keep working. Whatever you do — from goals as lofty as building a single page application to those as mundane to working to stand at a table for 30 seconds in rehab — do it with all of your ability.

For another, take advantage of your support systems. For me it was my wife, family, church, coworkers, as well as the nurses, doctors, and physical and occupational therapists. Seldom does anyone actually want you to fail (and even if they do — they really shouldn’t), so reach out for help when you need it, because you will need it.

Third, if you’re ever stuck in a rut and unable to do what you want — whether get that first job out of school or get back to work following a major injury — make the most of your time. For me that looked like watching a ton of Pluralsight videos to keep my mind reminded of the end goal of full recovery as well as to feel like I was doing something of value. Honestly, it distracted from the pain as well.

Fourth, be honest. If you can’t do something, let someone know. People only know what you tell them. I was able to tell my therapists what my body wasn’t capable of, when I was about to fall, etc. I was able to tell my employer how much I could and couldn’t give so they could make hiring decisions as needed.

Ultimately, because they did hire on a junior employee, I discovered my love of mentoring, teaching, code reviews, and investing in the next generation of developers. That led me to become a team lead and manager and I have loved being able to contribute at that level.

Finally, remember to smile. For one, it’s not always possible, and for another — it helps you cope with life’s ups and downs and, ultimately, you’re more than a job or even a career or profession.

Make the most of life and keep trying with all of your strength.

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