Welcome to another of my more personally focused articles here on Bear Essentials. The eagle eyed among you may have noticed that last week we did not post a shiny new article, this is something that doesn’t happen too often, and of course there are reasons, this article talks about the week that was, and all that happened on it.
When I became aware that we would not be able to get out an article I considered having Em shoot up an apology on social media, accepting that we missed our own benchmark, apologising and leaving it at that.
On reflection I instead found myself wanting to pen an article about working with my particular issues and about the ways that those of us facing disability need to adapt to changing circumstances, which also ended up encompassing the value of self care and work life balance.
Please note: This article talks pretty openly about my own psychological issues and the effects of the current Pandemic and social isolation, so readers should be advised that it may be a little uncomfortable in places.
Let’s start with some context, my “normal” working week has been Monday – Friday mornings (10am-1pm) for some time. This of course dictated by my illness. I have a particular pattern to this working week, as I do with most things (my mental health and my neurological disorder make routines very desirable).
Two things happened to alter this pattern last week and combined to result in the need to miss publication date. I’m going to take you through both events and also discuss their effects and the lessons I have learned from a very different week.
Challenges. Part the First: Unexpected Reconnections
So during social distancing I have had some down days, very much like many other people I suspect. While I do like time to myself, I am by nature a gregarious creature and I enjoy the social interaction of working out of coffee shops and meeting up with people, when I am able. For the past 13 weeks this has of course not been possible, something which I have mostly adapted to, but as the time has worn on I have become very aware that I have fallen into an old pattern of pulling away from people.
The truth is, I am pretty bad at digital communication on a personal level at the best of times, I know, I know, I am a digital communicator for goodness sake. (The irony is strong in this one. Mmmm). But it’s somehow different on a professional level for me, and I have come to accept that. As a result I have actually ended up being a lot more isolated than I actually “need” to be. This has resulted in some reflection on the concept of reconnecting and how I might make some changes to my pattern.
Something you may not know about me is that I have been for my entire adult life an avid tabletop gamer. Yup all that dice rolling while pretending to be an elf, and those complex sprawling board games, even painting miniature figures. This has been a vital combination of escapism and creative outlet for me for many years. Since my diagnosis I have rarely been able to indulge this part of my nature and just before Covid 19 landed I had been looking at finding a way to change that. Of course with the addition of social isolation this idea got back burnered and I fell into my habit of just pulling away from making active changes.
Still it played on my mind as lockdown continued, and over that weekend I happened to get into a chat on Facebook about the fact that I had been missing this aspect of life, and some old friends invited me to join an online D&D (look it up if you need to) game. My initial response was to think it was going to be far too hard to fit into my life, and the reasons for that, along with the journey past them, are probably an article on their own. Anyway eventually we reached the conclusion that it was A: Doable and B: Worth a try. So I was booked in for a late (for me) night on Wednesday.
All this was settled and so as I started my week it was with the understanding that Thursday was unlikely to be a productive day. Why? Well that comes down to energy management.
You see I have to work pretty hard to conserve my energy. Believe it or not, experiencing multiple episodes of paralysis every day is pretty hard on the human body. As a result I don’t have the energy levels of most “normal” people, so I have to consider what to spend my effort and time on. Wednesday night was liable to leave me pretty drained and I would need to recover Thursday, in and of itself this isn’t exactly unusual, we’ve had similar effects after attending or running events over the years. So we just planned it in.
The Inevitable “Hang on a Second” Moment
“Ok so you basically breezed off work to play a game?”
Well yes, that’s technically accurate. But let’s look a little deeper. Why did I choose to do so?
Straight answer: Because I weighed up the impact of negative mental health on my ability to work, and concluded that the long term gains of taking some space to attend to my emotional needs was worth way more than pushing through to get out an article, which would probably have been a pretty weak piece of work anyway.
Now of course I am in effect my own boss so I can choose to do this, but as we get to the end of the article I will touch on why I think more employers need to recognise the value of self care on productivity.
Challenges. Part the Second: Bombshells
On the same week I also had a telephone appointment with one of the neurologists whose care I am under on Tuesday. Mostly I was just expecting a catch up and discussion of how I was, I really hadn’t considered it to be of any real consequence. More fool me.
This phone call actually included a pretty deep discussion about future options, and the possibility of my being referred for intensive and extensive in patient therapy. This prompted a huge mental upheaval for me and kinda blew a hole in my week, and here’s why.
There are two things that you need to know to understand the effects of this.
Firstly I am terrified of hospitals as a patient (oddly I am fine visiting in any other capacity), really terrified, and anxiety prolongs my episodes of paralysis. On those few occasions that I have been admitted to a hospital I have experienced exceptionally long episodes of paralysis (13+ hours in one case and never less than 5-6) so the idea of a month long admission kinda broke my brain.
The second part of this needs a little imagination to understand. Imagine please, that for about 5 years you have been constantly learning about an illness that restricts everything you do, that you have battled for financial and healthcare support along the way. Eventually you are in a place where you feel you have a good handle on it all and that life is pretty well sorted, you have been counseled to accept the reality of living with this state of affairs for your lifetime.
Now imagine being offered a referral to a treatment course that after intense work and commitment just “might” be able to change these facts. Now you may initially think, wow that must have been so great, but if that’s the case I would ask you to go back and really try to imagine yourself in the light I cast, because it really isn’t that simple.
Put bluntly, my whole world, my whole life has already been turned utterly upside down once, and it cost me more than I can properly articulate to learn to manage that paradigm shift. While the idea that I could improve or get better is conceptually wonderful, the reality is that it is scary as all hell.
“If” and it’s a massive if, I were able to attend and fully engage with the treatment course, and “if” (another huge one) it were to somehow significantly improve my condition, the whole ground I am standing on could move. Again.
It’s more than just dealing with the potential psychological impact of major change. It also encompasses the possibility of my being declared able to self support and having all the financial and personal support that we have had to fight for taken away, I could even lose my PA (who has become a close friend as well as a vital part of my support network).
So as you can hopefully now imagine, I was pretty well thrown by this. Much discussion with Em and the fact that I had an appointment with my excellent therapist on Friday meant that I was able to find a balance point, but it took a lot of energy to do so.
So Wednesday dawns and I have had a night of pretty much non sleep, again some context needed. For a couple of weeks now I have been experiencing regular nightmares, this is a natural side effect of my current therapy. I am generally pretty open in my writing, so I hope you will forgive my “fading to black” on this subject, but suffice to say that my personal life experience has at times left my brain with the raw material to create some pretty vivid and painfully realistic nightmares, ones I have no desire to share, even with my wife.
As a result of the phone call and the anxiety caused by the idea of interaction with people I haven’t seen in a long time (again an article on its own, but a very real thing), my nightmares reached a new high. I woke up pretty much every 30-40 minutes throughout Tuesday night, and even experienced the rather unique combination of falling into a powerful nightmare and then waking up totally unable to even move, I don’t think I need to elaborate on the reasons this is taxing.
Wednesday was a day on which I was deeply tired, and I had a morning/evening of learning and adapting to a new tech platform. I considered pulling out of my commitments, but on balance the need to see the thing through was of greater value to my mental health than the consequences, this by the way is a balance I have only been able to begin to learn with very skilled therapy. Making value focused decisions is a new tool in my life, and a very useful, if exhausting one.
So how did it go Bear? Was it worth it?
Emphatically yes. Despite being pretty well exhausted, and very anxious, I had a great evening being someone else, and connecting with some great people, including meeting a new friend. So totally worth it. I will be planning this gaming night as a regular part of my week from now on, as a result for a while Thursday will be less productive than it has been. But the benefits will outweigh the cost, and over time I will (hopefully) become more used to the change and so regain the Thursday work space I have chosen to commit to my mental health and wellbeing.
Thursday morning I was as expected wiped, utterly so as it goes. Happy but very much done and so we took the hard decision to pass on publishing that week. As an aside we usually have a store of backup articles to cover missed weeks, but Covid 19 has seen us blow through most of them, and the remainder are in dire need of a rewrite to account for changes to the world, or are not appropriate for publication at the moment, so we are back to writing week to week.
Friday was my therapy appointment, which was excellent as ever.
So we arrive at the weekend, which Em and I work hard to try and keep sacred. We are both workaholics and so we have to work to manage some downtime, working from home has only exacerbated this issue. So weekends are for us, unless we have an event.
So that was my week, why write all this?
Honestly? I really hope that by opening up about my own “weakness”, no it shouldn’t be coloured that way, but the reality is that it more often than not compromise is cast as weakness or failure when discussing work and disability, I can provoke some thought and understanding.
If you are considering how to accommodate someone at work who has complex health issues, please let this article teach you that you need to account for more than just the obvious. The reality of disability and work (hell life in general) is that circumstances are able to very rapidly reframe your ability to “do”. What is needed from those around is no more, and no less than a willingness to accept and adapt while trusting that we will do our very best. Something that absolutely can be done, and something that absolutely should be done.
Anyway that’s all from me. However I would be interested to hear your reactions to this article. How does it match your own experiences? How do you feel as an employer about the realities I outline? Would you be willing to accommodate to this degree? Should you be?
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Thanks, – Bear