There is no pleasure on earth that compares to the feeling of leaving Birmingham, England. The wave of relief that floods through the body as one's train finally pulls away from the purgatory that is New Street station. At that point, one isn't so much concerned whether the destination is heaven or hell, but simply "anywhere but here". Every time I've been to Birmingham by train, I've been stuck on the platform for hours wondering if I'd ever get home.
However, most times I've been to Birmingham by car, and, having successfully fought my way onto the M5 Northbound, the feeling of relief was similarly real. No matter how tired I was, no matter what injuries sustained to my body or dignity, the knowledge that Edinburgh was a mere five hour drive away infused me with renewed strength. There was a nice little curry place in Stafford that we often stopped at, once safely outside Birmingham's gravitational pull.
Now, I realise there are those of you who have had different experiences and have different feelings for Birmingham. Some people like the place. Some even call it home. If that's you, then know that I look upon you with the same wonder with which I look upon the birds in the sky. I can but marvel at your effortless flight. The law of gravity that holds me to this earth does not apply to you, and I am in awe of your grace and splendour.
For some years I ran a computer support company out of Edinburgh, and one of our clients was a chain of casinos based around Birmingham. We provided 24/7 support, and given that they didn't close until 6am, that meant getting woken up in the middle of the night quite often. If something had gone badly wrong, an immediate site visit might be required. "Curry in Stafford" became our code for "grab your kit, we're off to Birmingham".
For most of my twenties and thirties I was reachable by phone at any time of day or night. I'd say to people "call any time", and I meant it. I was always on, always reachable. Now, at 47, I don't answer the phone. Ever. My mobile stays on silent, voicemail is disabled, and my desk phone is unplugged. I have, I think, made one phone call (to my mother - note to self: call Mum) so far this year. I can't remember the last time I had a meeting, virtual or otherwise. I check my email once per day. Or not.
Emergencies? There are no emergencies. None I care to hear about anyway. If there's an emergency, call an ambulance, or the fire service. I live in the middle of rural France. If it's urgent, I guarantee there is someone closer and better equipped who can help. Especially if you're in Birmingham.
What happened?
Covid, for one thing. Even before the Pandemic, I'd adopted a lifestyle where I spent almost all my time working, and much of that coding where I don't like to be interupted. I had online language lessons at least once per week, but otherwise my main social outlet was attending conferences every few months. Still, I had a phone and would call friends, clients and make the various calls one needs to as a company director. I've never had difficulty picking up the phone.
Then, in March 2020, I caught Covid. It was mild. I've had worse flus. I recovered, or so I thought. Long Covid hadn't been invented yet, so I got back to work. What else can you do during lockdown?
Then the Long Covid symptoms started. Tiredness. Muscle cramps (so bad they can wake me up in the night). Heart palpitations. Dizzyness. Migraines. Crushing depression. Inflammation response is more severe - any injury or exertion results in much more severe consequences.
Oh, and the so-called "brain fog". Never forget the brain fog! Except, if you have brain fog... where was I? Birmingham? No, no, we'd left there. It needs a better name. "Brain fog" makes it sound like just a bit of fuzzy thinking. Like you perhaps forget things sometimes. It's so much worse than that. Start by combining dementia with PTSD and you have a starting point, but it's more than that. Cold weather, and, in the Spring, pollen can trigger it. Or stress.
One symptom that comes up again and again in Long Covid studies is problems with executive function. This is described as issues with working memory, cognitive flexibility and inhibitory control. As described here, executive function affects ones ability with:
As a computer programmer and company director, some of these abilities are more than occasionally useful.
That was over three years ago now. That is, like my pandemic beard (so my wife tells me), too long. My wife and I go to the shops once per week, but otherwise we live in isolation. We have one friend who lives about 20km away who visits every few months and is part of our "bubble", but otherwise we're at home, alone. I don't make or receive calls any more. Even when I really need to.
When we talk about long term illness, we often focus on the symptoms. We rarely look at the consequences. If you have a sudden accident, and lose, say, both legs, you know from the outset that they're probably not going to grow back. There will still be shock and even denial, but the evidence is pretty clear that you have a "new normal" now, and you're going to have to adapt to it. If you were about to buy a new bicycle, you can probably safely cancel that order. Other people, too, can see your disability. You don't have to try and explain.
When we catch a disease or a virus like a flu, although it can be pretty debilitating for a while, we have an expectation that we're going to get better. We might spend a week or so in bed. Longer, with some illnesses, but there's always the expectation, or at least the hope that we will get better and return to our old life as before.
With long term illness, this hope prevents us from taking the actions needed to adjust to our new life and capabilities. Planning for the future requires acceptance of the present, and while ever the hope of getting better stays with us, that acceptance can never come. Me? I'm not disabled. I...
And that, dear reader, is how far I got writing this before I burst into tears. Great sobbing floods that make it hard to see or type. My beard is getting soggy. Men aren't supposed to cry. I had that knocked out of me when I was a boy. Have you ever seen a 6'2" greybeard sobbing uncontrollably? It's not pretty. I find writing or thinking about this difficult. Right. Enough of that. Pulling myself together. Manly man. I have a tractor and everything. Raaar. I continue.
echo 1 > /proc/sys/repressionWhere was I? There is a point I'm trying to make here, I promise.
When long term illness starts, you don't know it's long term yet. You expect to get better. You put some things off "until I'm well enough", and then put them off again when you still aren't. Slowly things pile up. You know you're going to have a bunch of "catching up to do" when you finally get back on your feet. Sometimes you feel a bit better, and mistake this for recovery, only to relapse and fall further behind.
As the weeks turn into months, it all really starts to pile up. After more than three years, it's overwhelming. Even "urgent" stuff with real, legal and financial consequences starts to become "low priority", because in your world you have more immediate things to deal with. You start asking yourself "how much is the fine if I don't do this?" and after a while, you no longer ask. Compliance with the law becomes a luxury you can no longer afford.
Some things could be sorted out with a single phone call. If you could make that call.
If you could make that call, wait on hold for an hour, keep focused on what you need to say, get through to the right person, and then not get so stressed that the brain fog kicks in and you become completely mute. Sitting, unable to speak, with the person on the other end of the call repeating their question, thinking you're ignoring them, and getting angry. "Well? It's a reasonable question. I think I deserve an answer". On that occasion, words eventually came, but I was unable to respond for what seemed like an eternity.
I've been a company director and business owner since I was 19. Now, I don't think I can do that any more. And perhaps I no longer want to.
When you only have the energy to do one or two things, you have to prioritize. Of course, lacking executive function, you can't.
With brain fog, if you don't write it down, you'll forget. There was a scene in the film Memento where Guy Pierce gets some vital information, but he has nothing to write with. The terror of realising something important and knowing if you don't write it down quickly it will vanish is real — often it does before I can find a pen.
Stress makes brain fog worse, meaning if you do try to deal with stressful things, you're likely to render yourself totally useless anyway. When it gets really bad I have trouble following what my wife says to me, in English. I just can't follow the words. It's like a foreign language I don't speak well yet. I recognize some words, but then I miss the next ones. I try to assemble it in my head, and can't. Fortunately it rarely gets that bad, but it's scary when it happens, and not just for me. My wife has to deal with this, and she isn't 100% after Covid either.
If you're lucky, you have a support network. People you can ask for help, at least initially. However, there's only so long one can lean on others before becoming a burden. Our society isn't built to support the weak. People always tell other people in difficulties to "seek help", but from who? If you have legal issues (and money) you speak to a lawyer. Medical? See a doctor. Mental health issue? Hell, try a counsellor or psychiatrist - you might be lucky. Maybe the drugs will work for you. Or talking to a complete stranger with no shared life experience. But who do you turn to when every aspect of your life is completely fucked? God, probably. Only the imaginary can help with the ineffable? Perhaps it's time to join a cult? Even many of those seem to prefer cash.
Of course, no one in the outside world can see any of this. You look normal. Your social media avatar still looks the same. No one can understand why you won't shut up about masking and Covid precautions and the risks of Long Covid, and why you seem so angry that people you respected are back attending conferences, unmasked, as though the Pandemic never happened. Am I a joke to you? The mountain of scientific studies into Covid and Long Covid seem to have no impact, even on apparently intelligent people that I know.
So, where to now? As with Birmingham New Street, the answer is "anywhere but here".
There are two paths forward from here. One is quite short.
That short path is tempting, and were this just about me I'd choose it in a heartbeat. I can hear the M.A.S.H. theme tune playing in the distance, and somewhere Hawkeye is fixing my G&T. I'll bring the olives.
The longer path starts next to a sign marked "DISABLED - THIS WAY". There's a stack of colour brochures in a little dispenser next to it titled "So You Are Disabled Now", no doubt explaining how to come to terms with my new limitations and lead a "full and useful" life. That way doesn't look much fun.
As I have so often in my life when faced with two unpalatable options, I've chosen to make a third. While I am forced to acknowledge my disability, I do not accept it — not in the way it was offered. This is not a path. This is hacking my way straight through the jungle, but it's preferable to either alternative. The short path will always be there. I'll find it again if needed.
I want to write code and solve problems. It's what I'm good at. If I can manage my environment, and avoid stress, I can do it. There's a bit more of a process to it than I ever needed before, but I can still churn out the code under the right conditions. In some ways Covid has forced me to become a better programmer. I've had to learn a lot more about myself. The intuitive leaps are still there, the problem solving ability, the design skills. I can no longer just go for a run, debug the code in my head and come back and type it in, but I've found other ways to work. I'm having to untangle some code I wrote before I learned how to work with brain fog. What a convoluted mess. And sometimes I go to write code only to find I've already written it, months ago, and forgotten about it, but I've learnt to assume less, and I'm getting better at leaving myself breadcrumbs to follow.
The main thing holding me back at the moment is stress. There's a bunch of things that need resolving, one way or another, to be able to focus fully on the code. I need a simpler life, and getting there is going to take some work, and involve doing difficult and uncomfortable things. Like phone calls.
I'd almost rather go for curry in Stafford.
2023-06-28