“Finding work when you’re randomly subject to episodes of paralysis for eight hours a day creates its own set of challenges. But challenges are there to be overcome”
Welcome to a somewhat different article for Bear Essentials Coffee. I don’t often talk about my own circumstances, there is a brief touch on the challenges I face on a daily basis on the about page of the site, but mostly I tend to bypass it all and focus on the world of coffee. A few recent revelations and the launching of a new project, driven partly by my experiences, made me think about changing all that. So here, for better or worse, I am going to talk a bit about myself, how and why I came to be blogging about coffee in the way I am. About adapting life to my illness, and the way doors have started to open that may allow me to do a lot more within and for this industry that I love.
The Short Version
For those who just want the headlines, I suffer from a combination of illnesses that can, and do reduce my physical ability, limit my cognitive function for short periods and leave me experiencing multiple episodes of total body paralysis every day. When in an episode I am unable to move and completely vulnerable. Episodes can last for multiple hours and usually total between 5 and 8 hours a day, every day. As a result of these conditions I am of course not exactly an easy employment prospect and have been declared medically unable to work.
All this meant that I was left in a kind of limbo, at home and not able to work. After much boredom and frustration at home, I decided to carve out my own way of working. This was the beginning of Bear Essentials Coffee, of my journey into working with a disability, and of everything that followed and is still to come.
The Somewhat Longer Version
I have a number of medical conditions, and while they all combine into the entity that makes my life so very special, I will try to break them down.
Firstly I have Coeliac Disease, an Autoimmune Disease manifesting as a severe allergy to gluten. My body is unable to properly process gluten, and if I consume it, I suffer from a number of symptoms. Headaches, stomach pain, bowel inflammation, shakes and the rest. For anyone who doesn’t know the illness let me just say it’s pretty damn nasty.
I also suffer from a condition called Gluten Ataxia, this very rare autoimmune disease is a bit like coeliac disease on steroids. Though importantly it is actually an entirely separate illness, you don’t need one to have the other, although they are often found together. When I consume gluten, in addition to the symptoms of my coeliac disease, my extra special immune system misfires and identifies the brain cells in my cerebellum (the balance centre of the brain) as gluten and proceeds to destroy them. In short if I eat gluten, I suffer permanent brain damage. The long term effects can vary, in my case the damage has reduced my reflexes, and caused me to struggle with things that used to be second nature. I can no longer properly multitask, my memory is less effective than its used to be and I have a harder than usual job learning new skills. I feel the need to say this point that I am very, very fortunate, because I have been a passable athlete in the past, am about 70% ambidextrous and have had a near eidetic memory, the reduction in ability, while rather pronounced is not as debilitating as it could be. To paraphrase a neurologist who examined me, “Because you started so far ahead of the curve, you are pretty much just reduced from talented to normal in some areas”.
My final condition is Episodic Paralysis, this is the big one. I am randomly and rapidly reduced to a state of total immobility for multiple hours a day. My body becomes unresponsive, my eyelids close and won’t reopen. To all intents and purposes I am left entirely helpless, often for several hours. After an episode I suffer from disorientation, significant tiredness and some pain. As yet no one has been able to diagnose the cause of these episodes, but I suffer from them everyday, and most likely I will for the rest of my life.
Oh and of course there are a few minor attendant issues. For those who haven’t had the pleasure of learning about them, autoimmune disorders tend to come with “friends”. I have pernicious anemia and so need regular B12 injections, I am, quite spectacularly lactose intolerant, and I have a very picky stomach with some IBS. Keeping healthy takes time and effort, and maintaining mental acuity requires regular stimulation.
The Much Longer Version
If you are still interested in some more detail, and a more personal perspective I will do my best to provide it. But you will have to forgive the length as it’s a story that may take a bit of telling.
(Lack of) Independence Day
On the 4th of July 2015 I experienced my first ever episode of total body paralysis. At the time no one really knew what to make of it, and it was, quite frankly as scary as all hell.
I had been grabbing lunch at a cafe with a friend, a place at which I regularly ate at the time. I have been a diagnosed coeliac for most of my life and so I habitually make very sure of what I am eating. A combination of random chance and misfortune meant that on this day I ended up being served (entirely accidentally) a sandwich I was told was gluten free, but wasn’t. Usually a coeliac who consumes a large amount of gluten like this is in for a rough time, the bodies reaction is pretty nasty, and really doesn’t need to be elaborated on, suffice to say I was prepared for an unpleasant experience. But what I had not bargained for was suddenly discovering I was unable to move my right hand and arm and all that would follow…
It all started on our way to the hospital to get me checked out, something we decided was worthwhile due to the sheer amount of gluten I had inadvertently consumed. In the cab my arm and hand experienced some strange tingling and then suddenly stopped responding. Then it started to spread, with the tingling moving to my other hand. We arrived at hospital and from here on in my memory gets more than a little fuzzy. Within a relatively short space of time I lost the ability to move at all and discovered I couldn’t even speak. The team at A&E started to work pretty frantically as my tongue began to protrude from my mouth. The first concern was that I had started to go into anaphylaxis, doses of antihistamine and various other drugs were administered and after a few hours I slowly regained the ability to move normally. Later follow up tests through my GP suggested that I had experienced some form of extreme reaction to the amount of gluten consumed, though likely not anaphylaxis. Recovery time and some monitoring at home seemed to be the end of the story and life went back to normal. Lessons learned and no lasting harm done. From here on I carried on as normal, I was working for myself doing some consultancy for an academic friend and project managing some science outreach events. We moved to a new home, life in fact, happened.
A Few Months Later
As we approached Christmas 2015 I started to have seemingly random episodes of paralysis, the first couple were pretty shocking, and I spent a fair amount of time being bundled into ambulances and getting very familiar with A&E here in York. Of course investigations were ongoing at this point, I saw several specialists and was quite the medical mystery, no one seemed to have any idea what was happening. Eventually we established that while paralysed I was in no major danger as my vital systems functioned effectively and as a result we were able to simply ride the annoyingly regular episodes out at home. This was especially helpful as I am I deathly afraid of hospitals, and it later transpired that stress exacerbates my episodes, one episode which sent me into hospital lasted for over 13 hours. That’s 13 hours in which I could neither move nor speak, yet was fully aware of everything happening around me. 13 hours in which my friends and family sat helplessly by my bedside trying to comfort me. 13 hours in which I could hear every conversation as doctors failed to come up with any workable theory as to what was happening, or offer any idea when or even if, it would end. Definitely up there on the list of the most terrifying hours of my life. I am not sure I can properly express how it feels to lie there unable to interact, entirely helpless and with no assurance that you will ever move again, I honestly don’t think I want to be able to fully articulate my experience, and I certainly don’t want to even consider how my wife, family and friends must have felt. Thankfully the episode did eventually end and I was able to go home, but the condition it turns out wasn’t going anywhere.
Life with my New Illness
I won’t lie, life at this point was pretty rough, and more and more questions were asked with what felt like less and less answers forthcoming. Over the next twelve months or so, the episodes waxed and waned, so much so that at one point I felt able to ride them out well enough to go back to work, taking up a role in retail management, for a company which sold Tea and of course my beloved Coffee. For about a year I carried on, admittedly against medical advice. Episodes happened pretty much every night and I just worked with my senior manager to adjust my hours so I could recover enough to function each morning and then head into work. It could be argued on reflection that this was remarkably stubborn, pretty stupid and even downright dangerous. But I can only try to express how much you need to push back when you are in this sort of situation, how much you are willing to fight for any sort of “normality”. Sadly the normal I had fought so hard to retain was not to be, after a while the episodes started to happen more often, mostly entirely unpredictably and even at times while I was working. The company I worked for were incredible, they altered my hours, ensured I was never sole working, arranged for cover so I could make medical appointments and allowed for me to ride out episodes on a sofa in the staff room, even going so far as to authorise my wife to come in and look after me during episodes on the premises. Hell they even arranged for my wife to travel with me as my carer when I needed to attend training at head office and to do opposition research in London. I really cannot say a bad word about their efforts to enable my working, I just wish every company was as understanding of disability. But in the long term too much time was lost and too much of my ability to properly do the job I was paid for was compromised. After a lot of discussion we agreed to part ways on good terms. I was officially declared medically unable to work.
Life at Home and the Dawn of Bear Essentials
Reduced to staying at home and doing my best to function around episodes while more investigation went on I was ok for a while. But with a predictable inevitability my patience for this new lifestyle didn’t last. I have never done well with being passive and the frustration at my situation started to build. I won’t talk about all that happened, I will say that I must have been pretty unpleasant to live with at times. It was in this state of uncertainty and confusion that I fell back into coffee in a big way, meeting up with a guy called Pete who is now a very good friend and a partner in future ventures, when he opened up a small coffee place in York, I found myself inspired in sharing a passion for coffee. It all started with chatting about coffee and its history, effects on culture and on life, how to brew it and all the other other things I wax lyrical about on this very site, eventually we talked about my helping out with making some of my knowledge available to his team, and also about starting up a “coffee collective” where people could taste different coffees, learn more about the bean and all that happens in the industry. Sadly circumstances weren’t kind at the time and the coffee shop had to close, though Pete had established that York was definitely the place he wanted to take his coffee journey, and we had both made a good friend or two. It wasn’t long after all this that my wife suggested I start a blog on coffee, and Bear Essentials Coffee was born.
The Nuts and Bolts of Living with my Illness
Like anyone living with a long term disability I have had to accept more than a few changes and restrictions in my life. I need to live on one floor, the risks of an episode sending me down stairs are just too great. I cannot ever be really alone again, I am always accompanied by someone, be it my wife, a friend or my full time carer, and most often a combination of the above. I am of course required to observe an exceptionally strict gluten free diet, and have to vet potential restaurants for both allergy awareness and kitchen practice. These aspects of my life do of course come at a price, both financial and emotional, the scarcity and prohibitive cost of bungalows means that we are dependent on a housing charity for the provision of our home. The need to be constantly accompanied means I have had to adapt to a lack of privacy in my daily life, and that we need to access funding to pay for someone to work as my carer.
It’s not easy, and I freely admit that I make use of counselling and support to enable my acceptance of these changes and that I am far from finished on my journey along that road. But with some forethought and planning it is mostly possible for me to live my life, I can work, after a fashion, though so far not in any kind of paid capacity due to the restrictions of time and the unpredictable nature of my illness. The continued growth of voice technology even enables me to achieve some things while I am paralysed, yes those wonderful home assistant “toys” are a truly integral part of my life.
Bear Essentials Coffee is something I am deeply proud of, it’s small right now and it will take time to spread the word. Initially I was nervous of putting my own opinions and experiences out there, but I have found my views and work well received by enthusiasts and professionals alike. Bear Essentials has also become more than I first thought, indeed it has enabled me to potentially have more of a life than I expected. I have, through my work on this site met many people who I now consider friends, I have been able to make my own humble skill set into something hopefully useful to the reader. I have even been lucky and privileged enough to have had a part in linking up some great people in the various aspects of the industry and I hope to have made a difference in the process. Finally, I have been inspired to work towards more inclusion in the coffee industry, and in the world at large. Right now, the future is definitely looking interesting. A reunion with a good friend has led to the beginnings of a whole new venture, one which has the potential to both grow, and to make a real difference in people’s lives.
About Bear Essentials CoffeeIf you have enjoyed this or any of my writing please check out my Homepage to find out more about me and my work. Follow the blog and if you feel you can, drop a donation to support this project. Thanks, – Bear