My recovery from ME/CFS - part five: The leap.

View from the wings during rehearsal.

If you’re new here, it is advised to read the previous parts of the series first: Prologue, Part One, Part Two, Part Three and Part Four.

It’s Saturday, October 11th, around 8:30 pm. I’m sitting on a stool on the side stage, using hot glue on a tea cup that has just come off stage and is shattered as part of the performance. The dancers are scurrying about, adjusting the fit of their pointe shoes or stretching a final time before running back on stage. The music is loud. We can actually sing along and no one notices. Lights keep changing and my colleagues in tech, props, lighting, costume and hair and make-up, all in black, are going about their business. Cues come in over the radio. It’s going well.

When I said yes to this two-week job in props a few months ago, it felt like a gamble. I had made huge progress with my recovery already, but I was still a long way from what the job would require of me. We work long hours, often in the semi-dark, carrying out time-sensitive actions from behind the scenes and interacting with dozens of people. For weeks, we often only go home to sleep and return first thing in the morning (including the weekends). It’s a work environment like no other, and one that I’ve come to love over everything else.

Like many things in my life, working in props was the result of a rather random yet decisive moment. In 2018, I had already worked as a background actress for ballet and opera for many years. I loved stage life but had little understanding of the other professions associated with it. Because we were handling machinery on stage that year, us dancers and background actors were working with the tech department more, and I got curious. I had just completed my tiny house build so for the first time, some of the things they were doing seemed familiar to me.

Come closing night, the whole production wrapped up in the feeling of success and sipping away on sparkling wine before everyone went their respective ways, I saw the stage tech team leader prepare to leave. On a whim, I walked up to him and asked: ‘So … if I wanted to work in your department, what would I need to do?’

In my mind, this was a far stretch. I had no working experience or formal training in the field and this wasn’t exactly a small-town theater. There was also, to my knowledge, only one woman on the team and I was by far the youngest. I don’t even know if he reliably knew my name then. But I went and asked anyway. Three months later I was testing out in stage tech and three months after that I moved to props. This year, despite the circumstances, I became the senior props manager for a large opera production with the Berlin Philharmonics, and I will resume that role for next year.

Everyone who knows me personally will tell you how my eyes light up when I talk about work. It’s an incredibly vibrant, intense environment and you meet the most extraordinary people. Dozens, sometimes hundreds of people coming together to produce the best version of an opera, a concert or a dance performance that they can create - there’s just nothing quite like it.

During my time with this illness and throughout the recovery, a big part was being able to let go of my previous life. There were definitely some things, patterns, people I had to say good bye to in order to move on. Since I didn’t know if I was ever going to be truly getting better, it was important not to cling to jobs or activities and be eternally upset that I couldn’t do them anymore. I simply didn’t have the energy for it.

At the same time, I also knew that simply ‘giving up’ wasn’t going to do the trick either. I had to find a way to imagine a life after illness that consisted of things I truly loved, even if they felt unattainable at the time. And stage life was definitely a big part of it. So when the offer came in, I decided to say yes, even if in that moment, it was impossible to say whether I could actually do it.

Over the course of the summer, I did indeed make a lot of progress in my recovery, but up until a few weeks before my previous post, I also felt slightly stuck, like I had hit a ceiling. Which, after a while, makes you go: ‘Maybe this is as far as I’m going to get.’ It was certainly nowhere near the ability to work overtime for two weeks straight.

A few days before I went to work, my parents had friends over from the US and we spend a lot of time together, which was the first time in my recovery that I was with several people for more than an hour or two. It went well, sometimes I had to take a break but I was even able to go on a little hike with them the final day. (Again, first time in about a year.) I had a bit of brain burn and some fatigue, but I felt good.

So when I eventually did go back to work, an interesting thing happened. This was it. I was going all out. No hypervigilance, no slow introduction into the new activities - just … bam. And it worked. At this stage, my engine had been back up running a little bit; sputtering still, but technically intact. I knew, even though it didn’t always feel like it, that based on my level of activity now, there was no reason to believe that there were any physical limitations. If anything, it was my nervous system still catching up. So I went from an average of 1,500 steps in September to 13,000 on my third work day. It was like I kicked the engine and the sputtering stopped - instead, it was running just like it used to. A little tired sometimes but otherwise fine.

There is a line that kept coming up in recovery interviews I had watched in spring - ‘At some point, you have to start living your life again’. To someone who’s bedbound and unable to feed themselves, this obviously sounds like a trivializing insult, but it’s not meant for this stage of recovery. Instead, speaking from my own experience, it’s a crucial piece of advice for this period of transition when you’re coming out of the ‘chronically and severely ill’ phase into the ‘somewhat recovered? Maybe better? Where am I?’ phase. A lot of people, judging from the countless interviews I watched, get stuck when they’re, like, 70 or 80 percent there, and it seems like there’s a reason for this plateau.

As with most things in life, I tend to favor a psychological perspective (humor me, it’s my degree after all). When I started working on my recovery and all these small things started returning to my life - reading a few pages, being able to take out the trash, gaming for an hour or two, even when it came with some symptoms - it obviously felt like win after win. I was on a slow and almost steady roll. Yes, there were ‘relapses’ in between (again, I think ‘adjustment period’ is a more accurate description) but they became fewer and fewer.

As you expand your range of activities over time from house-centered to outdoors and social activities, the individual steps will naturally get bigger. It’s simple to go from reading two pages to reading five, and you can stop at any time. But the leap from not leaving the house to going to a store is much bigger, and at some point, it doesn’t make much sense or is impossible to ‘portion’ these things. Like, I’m either going to go to the movies or I’m not. I don’t want to walk out during the film just so I ‘gradually’ get used to this activity again (even though it’s important to remember that I could, at all times, do exactly that).

So as time goes on, the acts of courage while rebuilding your life will get bigger and bigger. And at the same time, you realize you’re no longer at the very bottom. Id est, you have things to lose. So naturally, you start to bargain. Like ‘Maybe I’m going to rest a little, just in case, because I don’t want to be in pain again’. And so I was teaching myself that some things weren’t ‘safe’ enough yet.

Sure, part of it is plain acclimatization, and I used that whenever I could. I probably could have been on that hike in July, physically speaking. But I wouldn’t have felt up for it. So giving myself time was crucial. But at some point, and I quote, ‘You have to start living your life again’. Pre-emptive rest, monitoring of symptoms around certain activities and ‘micro-dosing’ life eventually kept me stuck.

There is also a different component to it. When dealing with a mainly psychosomatic illness, we understand during recovery that something (often multiple things) in our previous lives has made us sick. We have, maybe for the first time ever, experienced true rest and freedom of some of our responsibilities. As we’re moving towards recovery, ‘life will continue’ can seem like a threat rather than a relief. Since a lot of my time resting had been spent in various levels of pain and exhaustion, I hadn’t yet made up my mind about all aspects of my future life. Naturally, it seems daunting to transition back into the responsibility to sustain yourself financially (I had been on sick benefits), to run a full household and to kickstart a social life that had been pretty much non-existent for many months. Plus, as many will experience after life-threatening or otherwise severe illness, a lot of things simply don’t seem the same anymore - you’re not simply returning, you sometimes pretty much start from scratch.

So as I moved along my recovery, the big leap back into a ‘full’ life seemed daunting and overwhelming for a long time. Yes, you can chop some things up into smaller pieces - if you’re employed, you can return to work with fewer hours initially, for example - but there will always be a few big, binary chunks. Either you’re doing them or you’re not.

Part of that is also people’s assumptions. Seeing me go to work will alter their expectations of me - something I have been very mindful of from the beginning. I attended my choir’s concert on the weekend and upon hearing how I was doing, they all hoped to see me back in rehearsal in a few weeks. To which I replied, I can’t tell you yet. I will make that decision in my own time.

As I was sitting there on the side stage, fixing the cup that inevitable would get smashed on the floor again in the next performance, I was beaming. All the introspection and the hard mental and emotional work I had put into my recovery was worth it ten times for this moment. I now remembered what it felt like to be alive. And it was the most extraordinary feeling.

My final day of work for this project was ten days ago. I neither crashed during nor after, I still experience fatigue and a bit of brain burn sometimes, but that’s it for now. The shows went well, I met lovely people along the way and I’m back at the opera in a few weeks for a new production. Knowing that I was able to pull off a big job like this one without having to push myself physically or mentally, and knowing how much I enjoyed that, builds a lot of confidence. I have since moved back into my tiny house permanently and am renovating the final bits as I go.

And yet, I don’t make haste. Pressure is a big thing in healing from anything, so I’m not saying ‘I’m now fully recovered’. There are still some leaps ahead of me I’m sure. All I’m saying is I made it very far and I’m in a good place right now, and time will tell the rest.