In our studies and practice of HEMA many of us do it to get a bit of a refuge from other things, from worries and concerns, to get away and narrow reality down to a tight focus on just the fun and excitement of fighting. However, for some of us reality tends to still make its presence felt quite clearly, forcing us to act in ways that can easily be misunderstood by our training partners and students. This is made all the more difficult when those issues are something we do not like to, or even can, speak openly about.
So, for that reason, to raise the awareness of such things somewhat in the HEMA community, and to show others in similar situations that there are quite a few of us, I decided to share a bit of my very personal experiences in this, in the hopes that it might help.
The first issue actually started shortly after I began practicing HEMA eight years ago. It is not too serious in the sense that it is no threat to my core health, but it affects many things, both HEMA and socially. Most people don’t know it as I have only told a few, but others might have noticed me sitting down a lot at events, not taking part in all the things or sparring much, even if I am sometimes persuaded into it. There is a “monkey”, a non-obvious reason for this. I have something vaguely called capillarities, vascularities or purpura. The definition is somewhat broad and imprecise, and it is quite rare, like 1 in 300,000 or something. My variant is even more rare, which actually made one of my doctors disturbingly happy, chattering on about wanting to display me to fellow doctors at a medical convention… I was far less excited.
Basically, red blood cells leak out of my blood vessels into my skin under certain circumstances. The symptoms are bleeding blisters on the lower legs due to a non-contagious infection in my bloodstream and it is triggered by heavy exercise, sweating, standing up for too long, pressure on skin, flying, drinking alcohol and mosquito bites. Basically everything associated with HEMA…
Bad cases I get deep tissue blisters although that is rare and I have learned to mostly avoid it. Almost every event causes less malign blood blisters though, so it is always a bit of a calculation on whether I am willing to take the risk and have the next six weeks healing up again. I am lucky though, in that this doesn’t really threaten my health. It is painful but mostly cosmetic with scarring etc. There is however no treatment and no one even knows what causes this so there is no hope for any either. Too little potential medical profit in this to be attractive to any company to do research on.
Events in particular, with heat, social drinking and standing up for full days are a real killer for me and a few times, like at Fightcamp in England 2012 and in Bruges 2013, it’s been really bad. Still, I refuse to give that up, but I need to do it in a way that works.
This one took me about 30 years to identify and despite even having had full blown seizures twice and ending up in hospital once, neither my doctors nor myself figured it out. It was not until I met a now very dear friend who suffers from heavy migraines ever since she was a child that I recognized it. This is an odd “monkey”, and was thus very hard to identify as they are migraines with severe effects but no pain, thus commonly called “silent migraines“.
Silent migraines involve several symptoms and are usually more or less painless. Common symptoms are irritability, visual distortions, blind or flashing spots in your vision, dizzyness, numb limbs, sensitivity to light, sense of fatigue and weakness. I have all of these. For some it also involves trouble hearing or hearing things that aren’t there, strange smells, difficulty remembering or pronouncing words. These symptoms tend to come in particular order so some can be used as warning signs of oncoming attacks, which is good to know.
I can now see that this has been with me since my teens, but it accelerated and came to its extreme when I was a young father in my early 30s, working all the time, not sleeping more than 4-5 hours per night, never eating lunch and basically burning the candle at both ends for a decade or so. This triggered these migraines regularly, but it has continued with regularity ever since, despite me changing my life style.
The worst incidents gave full seizures with something quite reminiscent of epilepsy, although I do not suffer from that, but the two conditions seem to be related, with the brain misfiring. The second time it happened, in 2005, I awoke in an ambulance on the way to hospital and my baby son at my side. It was a truly frightening experience. One minute in the super market with my son in a stroller, the other minute in an ambulance with blaring sirens on the way to the emergency and cat scans to check out possible brain hemorrhaging, and my baby not knowing what was going on. Following this I have continuously and regularly experienced a lot of the various symptoms, at home and even outdoors just walking with my wife.
In 2013, at Fechtschule York in England, where I taught three workshops and about 8-10 hours, again it was triggered badly late at night, and while people around me didn’t quite notice I think, I had a close call and quite nearly passed out again with heavy visual distortions and dizziness etc. It was a screaming reminder of a need to keep a watchful eye on the monkeys.
Just a few days ago, at the supermarket this again came on strong and it was a very intense and stressful situation. Basically it is like a computer game or digital movie file glitching and skipping forward a few seconds every few seconds, but in your brain, which is a weird experience to say the least, as you skip from one image and situation to a different one with no proper transition inbetween.
I tried to continue shopping foodstuff, hoping to control it by looking into the ground and breathing consciously, but with the ambulance and hospital episode from a few years back in mind, I eventually gave it up and got out as quickly as I could, hoping on the way home that I wouldn’t pass out. Since I was home alone with my youngest son (12 years old) it was a bit tricky since I didn’t want to spook him, but he needs to be prepared to handle things if worst comes to worst.
Different things seems to trigger it for me; overheating, exhaustion and/or stress. Also flickering lights, such as at the supermarket seems to be a trigger. Luckily it passes with some rest and even if I am a bit shaken and arms feel drained and weak afterwards, it’s alright. I am also lucky that with one exception, it hasn’t gone farther and never in a training session, or in actual sparring, nor when I’m out camping alone in the woods, so it doesn’t cause any safety issues and I can do these things still.
So, why all this navel gazing and the detailed and personal list of medical whining? Well, the thing is that these things control my life, including HEMA, and yet most people who meet me do not know of this and only see what I do and not the reasons behind my habits and decisions. I normally don’t explain, either because of integrity or because the situation feels wrong for such a personal talk. I am sure this has led to misunderstandings more than once, not least since I meet a lot of people in HEMA, travelling and teaching at 4-5 events every year. I am sure it has affected some people’s perception of me as I decline offers to fight, party or take part in other fun things that I really would like to do as they are what got me into HEMA in the first place, instead retreating for rest, trying to keep the monkeys in check.
I am far from alone in this and I know a bunch of people in HEMA who have their own particular troops of monkeys to fight. In some cases there are support groups available, sometimes only online, and there are even two dedicated groups for HEMA people on Facebook, one for HEMA people who struggle with mental health issues and one for those who struggle with disabilities in any form. Those with invisible issues suffer some particular challenges as there is often little understanding and sometimes even no real respect for the afflictions they suffer from. If you can’t see it, then it doesn’t really exist…
Struggling with these issues, it is an ongoing process figuring out how to live my life with it, hoping to do the things I want to do. There is no ready-made template to follow, no given road to take and I need to figure out what works for me. And as it stands, it means that I at least temporarily have to give some things up, but this is sometimes hard to do and I do it reluctantly, after a longer period of trying to avoid it. And nearing 50 it sucks having to make concessions as I feel time is running out and the decades ahead will only get tougher.
The consequences of all this has been that I reluctantly have pulled back from my own training and sparring and I am now in some ways less good at fencing than I used to be and far less than I hoped to be by now. I also mostly stay away from alcohol and I am kind of strict on mosquitos. With that I get almost no symptoms at all. Hopefully health is slowly coming back so I get back to training myself as well. Most of the scars will hopefully be gone in 8-10 years.
While my monkeys keep me away from things I would like to do more, I’ve now found my own path in HEMA and have redirected things towards doing research, building up the HROARR site, writing, studying, teaching classes and workshops, and now being part of starting up a new club. So there is a lot of good HEMA things happening that I can focus on instead. Everyone has to find their own way, but there are many paths to take, all of them good. And I am of course still practicing and sparring, only more selectively, instead focusing more on teaching.
As club leaders, instructors and just fellow training partners in a very physical, and in some aspects even a bit macho, but still developing martial arts culture I think it is important that we recognize that there will be not just people, but also a bunch of these monkeys in our training halls. At its core martial arts is all about success vs failure and that can in extreme cases lead to extended ideals on what defines those, what defines “good fencers”, celebrating successful role models, but not quite seeing all the others who don’t necessarily fit with that image. However, some people are fighting not just their opponents, but also some mighty, invisible kongs, and I have a very deep respect for them, knowing what they fight with every day, every hour, sometimes for decades or even their whole lives. In that, my little sister, born with cerebral palsy is ten times the fighter I or anyone I’ve ever met in HEMA will ever be.
Thank you for reading!
Instructor with the Gothenburg Historical Fencing School