My Humane Meat is selling so well, I’ve launched another new, direct to consumer product. Just email your order, along with your shipping details, and credit card number. And don’t forget the 3 numbers on the signature strip! Once you watch the video, you will want to stock up!
What will they think of next?
Unbelievable! Leaked video promo for a new UK TV channel! (sound on!)
A Long Overdue and Rambling Update
I didn’t know what else to call it. It is what it is. I haven’t written anything here in a few months. That’s down to the holidays, my stupid birthday, and then a couple of brand new seizures. My video on the main page is now out of date, and I need to somehow motivate myself to update it, or make a new one. A new one would be better, in every possible way. Let’s see how I feel in the next couple of weeks.
This section is turning into more of an epilepsy blog, so let’s start with my latest incident(s), and build out from there.
[WordPress suggested a trigger warning, because I deal frankly with health issues, physical & mental. That’s what this extra line you’re reading is: A trigger warning. You’ve been warned]
Two for the price of one?
I had two brand new tonic-clonic seizures at the beginning of February. The first one struck me at quarter to midnight on the first Friday of the month. It was 194 days since my last tonic-clonic seizure, which was in July 2023.
It was the first seizure I’ve had that wasn’t in the morning, or very early afternoon. That has never happened before. And I felt fine, and completely normal leading up to it.
Mrs. Hippy went to bed a little before me, and was still awake when she heard me cry out. It’s not really a cry, it’s just the sound of all the air in my lungs being forced out by the tonic portion of the seizure. She says I sound like wounded animal.
Mrs. H. came downstairs to find me in full seizure mode, which she timed at around 5 minutes. When I didn’t recover, she phoned 999, and the paramedics were here 7 minutes later, four medics in total.
It took me 45 minutes to an hour to recover enough to understand what was going on. My tongue was bitten to hell, but I had no other physical injuries. The last thing I remember is thinking I might have had a focal seizure. A lot more on this in a bit.
The next 36 hours, give or take, are a bit fuzzy, because I had a second, full-on, tonic-clonic on the Sunday morning, around 10:30am. I don’t remember anything about that morning, until well after the seizure.
Mrs. Hippy said this one wasn’t as bad as Friday night’s, but from my perspective, it was worse. I was more agitated, and confused. And I bit my tongue even worse, I caught the edge this time. Ouchies.
It took the paramedics 14 minutes to arrive this time, and we topped out at 6 of them inside my house at the very peak of the drama, while I struggled to recover.
My brain seems to come back online in stages, which makes it even more difficult to look after me in the immediate aftermath of a seizure. I am as strong as an ox, and as clumsy as a bull in a china shop at first. I have motor function, but very little motor control. I am semi-conscious as well, but I don’t understand words. I’m not even sure I hear them at first.
When I do start speaking, it’s mostly gibberish. I can’t understand words either. It’s called aphasia, and I have it post-ictally for a short time, as well as during partial aware focal seizures. Again, more on them shortly.
The one thing I always seem to say that is comprehensible is just plain sad. What I say, over and over, is this: “Help me”.
The last part of my brain to come online seems to be my ability to record, or retain memories. So basically, I am semi-functional, and conversing, before I can record the memories of it. It’s like walking into the middle of a movie, or joining a TV show already in progress. It’s disorienting.
This second seizure was also very unexpected, as I’ve never had two seizures so close together… except for the many clusters I’ve had. But when I’ve had clusters, they have been much closer together, minutes in between, to an hour maybe.
Were these two seizures close enough together to be considered a cluster? I don’t have a definitive answer, but my gut says yes. So for the purposes of moving forward, I had two seizures in one weirdly gapped cluster and I am counting this as one incident.
I did ask my GP, and she couldn’t say for certain either, but her inclination was to agree with my conclusion that it was one cluster. If my neurologist disagrees when I eventually ask, I’ll correct this, but based on my count, here are my new stats:
In the last 34 months, I’ve now had:
15 tonic-clonic seizures across
7 incidents.
4 of those incidents were clusters of
2 or more seizures in a row. My worst cluster was
6 seizures in one day. I could have died.
The paramedics have now been called
12 times, resulting in
10 visits to my house and
4 blue light trips to A&E, and
1 hospital stay for
4 days which began with
24 hours of complete sedation…
And that saved my life.
With both new seizures, I declined their kind invitation to spend 12 hours at A&E, but then I never, ever say yes. I’ve only ever been taken to A&E, because I was unconscious, or too incoherent to say “no thank you” at the time. If I’m going to die, I’d much rather die at home.
Focus on this:
Back in November, I wrote this piece, speculating with some actual evidence, that I might be having more than one type of seizure. I feel like an idiot that it took me so long to work all this out, but I got there in the end.
In December, I finally spoke to my neurologist, and she agreed with my hypothesis. For me, this really is the final piece of the puzzle.
Since at least October 2018, I have been regularly experiencing clusters of focal aware, and focal partial aware seizures.
At first, I thought they were two separate phenomena. The first was what I described at the time as “chemical waves of deep sadness and depression”, along with something else I called “brain blips” or “blanking out”, when I would lose a few moments, or more, and not know what happened.
Apparently, it is not unusual for someone to have difficulty recognising they are suffering from focal seizures for a long time. The problem is that the instrument you’re using to interpret the issue, your brain, is the same thing that’s malfunctioning. It’s like trying to use a faulty computer to check if the computer is faulty. It won’t always be able to self-diagnose.
I’ve referenced bits of this before, if you read back some of the earlier pieces here on the #EpilepsyHippy section of my website. I’ve talked about what I refer to as the incident with my car in October 2018. I have confirmed these details with people I knew at the time.
The car incident is this: I somehow ended up on a street I didn’t recognise, with two flat tyres, near my old office, while driving to central London for a nightshift. I had no explanation how it happened.
In my haste to deal with the double flat tyres, and get my car out of central London before the expensive parking restrictions came into effect, I was distracted from thinking about the most important aspect of this: the cause.
After many hours of hassle, I managed to get the car to my local mechanic, who asked me how it happened. And I remember struggling to answer him. I should have given more thought to the cause of the incident at the time, but I just wanted my car fixed.
I wouldn’t actually connect the car thing to my illness until June 2022, nearly 4 years later. And I only had the chance to run this all by my neurologist in December 2023. Not only did she agree with my guess that the car incident was related to my epilepsy, but she said most likely I had other symptoms that I didn’t notice, even before this. I expect she is correct.
I actually first clocked that something was wrong with me in either December 2018 or January 2019. I ignored it at first, as that’s what guys do with medical symptoms, isn’t it? Hopefully, it will just go away on it’s own. Mine didn’t.
With the benefit of hindsight, and my neurologist’s agreement, I now know that what I was experiencing back then were clusters of focal seizures. The waves of depression weren’t chemical, they were electrical. And the brain blips, were the seizures being memory wiped at the end.
I spent a great deal of my phone call with my neurologist in December, talking about these focal seizures. I’ve had them for more than 5 years, but only really worked out what they were in September of last year. That’s five full years, and for half that time I was having tonic-clonic seizures too. I knew they were related, I started to think the focal seizures were my aura… The sensations that precede a seizure… And they are my aura, but they are also a type of seizure in their own right. That’s been a huge revelation for me. I finally understand so much.
My seizures begin in my right temporal lobe. Seizures there are known to cause emotional responses, jamais vu, and memory issues, as well as nausea, and vomiting. I experience all of that. If the seizure in my right temporal lobe is bad enough, it expands to my entire brain, and I have a full-on tonic-clonic seizure. Everything fits with my diagnosis.
The last night I worked, which will be five years ago this March, is something else I’ve dwelled upon for a long time. Again, if you read many of the pieces in this section, you will see me refer to it.
I now know, without a shadow of a doubt, that what caused me to fall apart that night was a cluster of focal seizures. I confused it with a breakdown. I didn’t know for sure if it was neurological symptom, but I did wonder about it, even at the time. Back then, I confused my symptoms with MS, thanks to a well intentioned consultation with Dr. Google.
I requested a referral to my first neurologist, at the same GP appointment, when I was signed off from my job for depression. I had no idea at the time that the two things I saw her for that day, were really the same thing. My neurological issues directly caused my emotional, and psychological issues, by messing with my mood, and brain.
If you’ve ever had good MDMA, this may make sense to you. You know that feeling, the waves of electricity, joy, pleasure, love, whatever you want to call it? It’s why they call it “ecstasy”. Now, imagine instead of love, and joy, you have the same intensity of waves, but this time it’s intense sadness, overwhelming depression, and impending doom. Over, and over again, for hours. That’s what a cluster of these seizures are like. Now, imagine trying to work while experiencing them, while still not knowing what they are. No wonder I broke into a million tiny, little pieces.
And I did break. Badly. It got so bad, that I methodically plotted my exit from this realm. And I would have gotten away with it too, if it weren’t for those pesky, meddling international authorities!
Between the clusters of near fatal seizures, and my own hand, indirectly caused by clusters of partial seizures, it’s just dumb luck (and modern medicine) that I’m still alive, and my epilepsy hasn’t done me in yet.
Why am I still here? Answers on a postcard, please.
Knowing, understanding, and confirming that I’ve been dealing with epilepsy for longer than I initially realised has been a weird comfort for me. Cathartic even. I feel oddly absolved. Like, I’m not crazy, I’m not a hypochondriac, and I’m not imagining any of this. It’s real, it’s not new, and it’s been messing with me for a long time. Being able to finally lay it all out, in a linear, cohesive, narrative, and connect every dot, has brought me an odd feeling of closure.
The hardest thing about the focal seizures, is just remembering you’ve had them. There is a mind wiping quality to them.
When I was discussing this with my neurologist, she asked me how many of them I thought I had. And I couldn’t answer her at the time. Because I didn’t connect the earliest ones to anything, and I confused the more recent ones with being my seizure aura, I didn’t really pay attention to them. If they didn’t lead to a tonic-clonic seizure, then my meds were working. I had no idea they were seizures in their own right. Now, I know. And I’ve started to count, and log the ones I notice, and recall.
So how many have I had? Realistically, somewhere in between dozens, and hundreds. Definitely more than 100, probably less than a 1000. It’s tricky to put a number on something that’s hard to count, or even be certain you had one.
When I had the full-on seizure recently, on the Friday night, I definitely had a focal seizure just before. And even knowing what I know now, I wasn’t completely certain until afterward, and I woke up from the tonic-clonic, that I had the focal seizure. And even if I was certain, I doubt I had a full minute between the focal seizure, and blacking out. It doesn’t give me that much warning.
I do remember putting my iPad down when I had the focal seizure, so I took it seriously enough to protect my electronics. And if the feeling had just passed, I could have picked the iPad right back up again, and I would have forgotten about the brain blink. From now on, I am aiming to err always on the side of caution. If I think I might have had a focal seizure, I’m going to protect myself, and my possessions as best I can.
Now, what?
Moving forward, god I hate that expression. Like, we have choice of moving backward. Moving backward, I am going to go back in time, and fix all the dumb shit I’ve ever done. Anyway…
My neurologist increased the dosage of my current medication, and I am also gradually increasing the dose of a second, new medication. All this is happening about a month later than expected, as the neurologist’s letter with all of these instructions, took two months to arrive. Had it come sooner, would these changes have prevented my most recent seizures? We’ll never know.
I have accepted my fate. I have a rare, complex, hard to diagnose, difficult to treat, poorly controlled form of right temporal lobe epilepsy. One person out of 100 people has epilepsy, but only one person out of 100,000 has the same flavour I have. That means maybe only around 700 people in the entire United Kingdom, have the same thing I do.
One seizure out of 1,000 is fatal for people with well controlled seizures. That leaps to a whopping one out of 150 for people like me, with poorly controlled seizures. I don’t fancy those odds.
Even with the best of care, and intentions, 30% of patients don’t respond well to medication. I am growing increasingly certain I am one of them. My neurologist says it is still too soon to tell, and I have to try at least one more medication that fails, to confirm it. Why wait? I can see where this is headed.
If I have 3 medications fail, they may offer me surgery, which I will most definitely decline. I don’t want a lobotomy. And even though I gave up drinking more than 20 years ago, I would still rather have a bottle in front of me, than a frontal lobotomy. Boom tish.
Seriously, I am way too old, and sad to consider major brain surgery. Like I said, I have accepted my fate, and it’s a numbers game. The more seizures I have, the more likely one of them is going to be fatal. I’m cool with it.
Recovering from a seizure is horrible. It’s like being resurrected, every time. It’s dealing with having a hamburger for a tongue for a couple of weeks. Being slow witted from a course of hardcore benzos for a while too. And most of all, being constantly afraid to leave my house, for fear of dropping in public.
I spend around a month recovering, and after every seizure, I lose a little bit more of myself, that I don’t ever get back. I thought I knew what bad depression was really like, until epilepsy started messing with me. Post-ictal depression is just so relentless, and unrelenting. Yes, I know they are very nearly the same thing. That’s the point. The hopelessness is bottomless.
Death, on the other hand, would solve all my problems, from the financial, to the psychological, and everything in between. And if a seizure strikes the fatal blow, it would be the sort of pleasant death, everyone else could only hope for. I wouldn’t even know I was going, never mind that I was gone. It would be like someone randomly hit my off switch. It would be the most peaceful departure imaginable.
And how do I know all this? Because I have done it 15 times already. The difference being that I’ve been revived, and resurrected after each of those previous seizures. It’s only a matter of time before I don’t come back, and SUDEP or status epilepticus takes me.
Until then, I will just keep trying to have as much fun as I’m able. And after reading all that, how much fun do you really think that is? It should be cocaine sex orgies every day, all day, for all of us, anyway. It’s not just my tiny little world that’s ending. It’s actually everyone’s, but I’m letting my tiny little issues distract me from the bigger, scarier picture. Hey ho.
After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press and Reuters, and 15 years as a duty news editor for BBC News, Doug – the northlondonhippy is now a full time hippy, and writer. And for the last few years, he’s been #EpilepsyHippy. His life was a whole lot more fun before gaining that new title. For real.
Doug is also the author of “Personal Use by the northlondonhippy.” “Personal Use” chronicles Doug’s years of experience with mind altering substances, while calling for urgent drug law reform. It’s a cracking read, you will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!
You can also find Doug – the northlondonhippy on Twitter: @nthlondonhippy but only if you look really hard.
And if you want even more, (and who wouldn’t?) you could always check out Hippy Highlights – which is the best of the best stuff on the site, and it’s all free to read. What are you waiting for?
20 Years of Me
Hello! And Happy New Year!
2024 is a special year for me, as it is my 20th anniversary of being a fake online hippy. That’s no small achievement, considering the last thing the world probably needs is a fake online hippy. Yet here I am.
I didn’t plan on becoming a fake online hippy, it just sort of happened, organically. I first used the name “northlondonhippy” on some online forums, unsurprisingly about drugs, and drug use. It wasn’t just about weed, although a lot of it was, but it was mainly about magic mushrooms. They were sort of legally available to buy in London until 2005.
When blogging first started getting popular, I was between jobs, so I started my first website, a Blogspot blog. And back in 2004, it really was a blog.
I had no idea what I was doing, much like now, only my writing in the beginning was really just stream of consciousness drivel. I even called it drivel for the first few years. I literally wrote about what I had for lunch, or how many joints I smoked. It was dull, but I posted frequently. And people read it anyway. I had followers, and fans. It was weird.
Around the same time I started posting online, I got a job with BBC News. I should have abandoned drug blogging then,, but I didn’t. I just quietly, and secretly kept going.
In 2006, I relaunched myself online with my own website, and URL. I tried to get more serious about my writing, and in some ways I did. I wasn’t as consistent, or regular in my posting habits, but I tried to have more to say. That first version of this website, was hacked to oblivion, and I lost a lot of my original content.
Things turned weird at work, and I got fucked off. So I did what any sensible human being would do, I secretly wrote a book while sitting in the BBC Newsroom. That book is called “Personal Use”, and I published it in October 2016. I wrote and published an actual book, I wasn’t just a blogger any more.
I was clueless how to promote the book, so for the first few months, I didn’t. I just gave copies of the eBook away to people on Twitter for free. And then I sent out three PR letters, and I included a signed, printed copy of the book, some chocolate, and a limited edition “Personal Use” mug. If you’ve got a mug, you’re lucky. There aren’t that many of them in the world.
I think it was the mug that did it, because one letter got a positive response. I was invited to the LBC studios, where I was interviewed by James O’Brien in January 2017, on his birthday. I hear that since Mr. O’Brien had me on his show as a guest, he’s become quite popular. Wish my radio debut had the same effect on me! To be fair, the interview did briefly increase my book sales exponentially, but it was fleeting.
I should have capitalised on this more, I should have used the momentum I had to build more of a profile. I knew I was risking my job, but I didn’t care. In fact, a part of me hoped I would be found out, as the publicity would have been useful. And then everything changed.
Mrs. Hippy had been unwell, and I didn’t really grasp how serious things were. When I did, I recommitted myself to my job, and backed off from trying to promote the book. Not long after that, my own health problems began. They’re the ones that led me to give up my job, and eventually dub myself “Epilepsy Hippy”.
When I gave up my job in Spring 2020, I outed myself as I became a full time hippy. I still didn’t realise how sick I was, and I hadn’t been diagnosed with epilepsy yet. I received a partial diagnosis around 18 months, and 10 tonic-clonic seizures later, but I didn’t receive a full diagnosis until just last month. It’s been a long, hard, confusing, frustrating, and nearly deadly 5 years, but I’m still here.
I think epilepsy is going to kill me. It’s come close a couple of times. I’m not coping with it well, and I’m struggling to figure out what to do with the rest of my life. Not knowing if you’re going to drop dead tomorrow, tends to make long term planning a bit trickier.
My anniversary year will be as much about looking back, as it is looking forward. I’m going to get nostalgic, but I’m also going to try to push myself to do more, to be more. There’s got to be a reason why, after 20 years, I’m still a fake online hippy. Together, maybe we can figure it out.
So here’s to the last 20 years of my life pretending to be a hippy online for fun, and (no) profit. I promised myself when I gave up my job that I was going to concentrate on doing good, and having fun, and thanks to my poor health, I have failed at both. I’m going to pretend that my anniversary year is going to turn all that around. And my main aim for 2024 is a simple one, to not die, and to see in 2025. Anything I do beyond that, is a bonus.
So stay tuned, as I will be sporadically posting stuff as we approach the 18th of March, which is the actual anniversary of my first ever blog post. Who knows, perhaps after 20 years of being a fake, online hippy, I will finally become an unlikely, overnight success. And it would probably totally do my head in.
After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press and Reuters, and 15 years as a duty news editor for BBC News, Doug – the northlondonhippy is now a full time hippy, and writer. And for the last few years, he’s been #EpilepsyHippy. His life was a whole lot more fun before gaining that new title. For real.
Doug is also the author of “Personal Use by the northlondonhippy.” “Personal Use” chronicles Doug’s years of experience with mind altering substances, while calling for urgent drug law reform. It’s a cracking read, you will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!
You can also find Doug – the northlondonhippy on Twitter: @nthlondonhippy but only if you look really hard.
And if you want even more, (and who wouldn’t?) you could always check out Hippy Highlights – which is the best of the best stuff on the site, and it’s all free to read. What are you waiting for?
The Problem(s) with British Medicinal Cannabis
by Doug – the northlondonhippy
This hippy opinion piece takes a deep dive into the dismal state of British Medicinal Cannabis.
The subject is divisive, and there’s bound to be an opinion in here that pisses off nearly everyone.
Introduction
Cannabis was legalised for medicinal use in the United Kingdom in 2018, under a ridiculously rigid, and poorly implemented regime for a substance that is quantifiably considered extremely safe. And it is all the medicinal users of cannabis, whether legally sourced, or reliant upon the legacy market, who have continued to pay the price for the mess that is legal cannabis in Britain today.
The general standard of the products legally available isn’t great, nor is their continued availability. And the customer service side of this industry is even worse, from the initial tidal wave of bureaucracy, to chasing your regular, monthly prescription renewals. It’s been a disaster.
Improvements are constantly promised, yet rarely ever seen, but the issues are even deeper, and more systemic than that. The entire set up is not fit for purpose, and needs to be overhauled from the ground up, using other country’s superior implementations as a guide.
The First Elephant in the Room
It seems ridiculous that I even have to point this out, as I rarely see it mentioned, but to me it is the biggest, dumbest accommodation made, in the entire British legal cannabis system. And the way everyone just rolled over on it, continues to boggle my mind. That accommodation is this:
Medicinal herbal cannabis has to be vaporised. This is a mandatory restriction, because if you smoke it, somehow it magically invalidates your prescription, and makes your consumption illegal. WTF?
Smoking cannabis is one of the oldest, and certainly most common forms of consumption in history. It may not be the most ideal, but certainly shouldn’t that decision remain with the consumer?
It’s fine if doctors want to endorse and encourage vaporisation as their preferred method for patients medicating. I own several vaporisers myself, and I love them. But at the end of the day, when I need to finally get some sleep, nothing hits me the same way as a neat joint (no tobacco) of pure Indica flower.
I’m sure some of you naughty legal prescription holders out there still skin-up on the QT as well, but the fact is that you shouldn’t need to hide your preference for combustion.
By all means recommend vapes, endorse them, subsidise them even, but don’t force them on everyone with some bizarre, performative, restrictive law. It makes a mockery of the entire system that is meant to legitimise the use of cannabis as an actual medication. Questioning, and denying the medicinal value of a perfectly valid method of consuming it, diminishes much of what you’re trying to achieve.
When the guidance, and the laws were being drafted, did anyone even put up a fight? There are plenty of people who were involved in this process, who knew better, yet rolled over anyway.
Cali Legal Weed
The US State of California legalised cannabis in 1996 for medicinal use. The system was really simple, and far superior to ours.
After an inexpensive visit to specialist doctor, who reviewed your medical history to see if you suffered from one of the many qualifying conditions that might benefit from cannabis, you were issued with a medical cannabis ID card. With that card, you could then visit your local, legal dispensary, where you could safely purchase your cannabis flower, from a knowledgeable bud tender, who had personally sampled every strain available, and could offer useful advice on your choices. You could even smell the aroma of the bud, before you buy, which is more crucial than you might realise when selecting the right strain for you.
Dispensaries popped up all over the state, and the sky didn’t fall in. In fact, the system was so successful, that 20 years later, they extended legalisation to include all adult usage, medicinal or not.
It’s not just California; more than half of all US states have now legalised weed. Many countries have relaxed their approach to cannabis, and many more are expected to follow in the near future. Sadly, Britain is not one of them.
British Legal Weed
To secure a legal prescription here in the United Kingdom, your only option at this point is to go private. The NHS still refuses to accept the undeniable benefits of medicinal cannabis use, but that is an argument best left for another day. I want to concentrate the system we have now.
As with going private for anything medical, private cannabis is expensive. There are consultation costs, prescription renewal costs (with some clinics), admin fees, delivery fees, and the cost of the actual medication itself. Oh. and don’t forget you need a proper herbal vaporiser, which is not an insignificant cost.
You need deep pockets, and for many, those pockets need to be even deeper than what they might spend for the equivalent from the legacy market. Or if they previously grew their own, it would cost exponentially more. Going legal ain’t cheap!
I don’t currently have a prescription, but I do have more than one qualifying condition, so I am eligible. And I do have a Cancard, but more on this a little later.
I monitor the state of our legal cannabis market via the many subreddits, and forums online dedicated to the subject. While I will acknowledge that people tend to post complaints in general, more than praise, the scales of the posts I see on medicinal cannabis tip heavily towards the negative. I’m sure there are some patients happy with the system, and if it works for you, that’s great. But I am even more certain, anecdotally anyway, that the majority are not happy, and would welcome significant improvements.
I tried to get a prescription a couple of years ago, but I lacked proof of the years of therapy I had when I lived in the states, as well as the psychiatric drugs I was force fed. Since then, I’ve been diagnosed with a rare, hard to treat form of epilepsy. And I’ve had seizures while taking lots of different pharmaceutical drugs, so I definitely have proof now I qualify, should I wish to pursue the legal route again. But for me to consider it again, the system would need that overhaul I mentioned.
Even the initial process can seem daunting to some, and quite frankly, that is because it is a huge bureaucratic mountain for many to climb.
You need to get a summary of your care, from your GP surgery. Not all surgeries are helpful. And you need to be able to prove that you have at least one qualifying condition, and that you’ve tried two prescription medications that failed to help with it. Plus if it is a mental health issue, you also need proof you have tried therapy as well.
And that’s just to qualify for the initial consultation, though to be fair, if you make this far, it seems most people are prescribed.
After your initial consultation, the real fun begins… Trying to get a hold of your medication of choice. Some clinics limit, or push you to products produced by their parent companies, and they all seem to want to push people towards oils first.
The clinic that prescribes you, then has to send your prescription to a dispensing pharmacy. Until recently, that prescription had to be on paper, but now it can be sent electronically. Either way, there will still be a delay in dispatch, assuming they have what was prescribed available, and in stock. And how many times you have to contact them all to chase it, when something goes wrong.
Most people have to try many strains before finding one that helps, as the doctors are not that knowledgeable about the products.
There’s an open secret regarding doctors who prescribe medicinal cannabis; they’re really only in it for the money, and very few have any useful knowledge of cannabis, beyond the 2 hour online training course available to be able to prescribe it.
Yes, you read that right. For a doctor to be able to prescribe cannabis privately, for a fee, all they need to do is follow some simple guidelines, and maybe complete a short online training course.
Don’t get me wrong, my personal view is that any doctor should be able to recommend cannabis in the same way they recommend aspirin. And you should be able to self-refer for cannabis, the same way you can purchase aspirin over the counter. Technically, cannabis is safer than aspirin.
Who would you rather have helping you choose a strain for your condition? A fully trained doctor who spent 2 hours studying cannabis, and cannabis based products online, or a bud tender, that’s tried every product they’re selling? I know whose endorsement would matter more to me, and I bet I’m not the only one.
Legal vs Legacy
In all of my 40+ years of consuming cannabis, I have never bought mouldy weed. I’ve never found insects in a bag of weed either, and I have hardly even seen a seed since the mid 1980s. And I’ve never had to wait 2-4 weeks for my medication. None of that is true for British medicinal cannabis. Everything I’ve mentioned has been an issue for patients at some point, especially the delays.
The legacy market has been efficiently providing quality products for decades, and continues to do so, all around the country. How it does that is yet another discussion, for another day.
The legacy market is unregulated, so it is obviously less than ideal, but it’s still a business, reliant upon repeat custom. Selling quality products insures punters come back, again and again.
From my perspective, the legacy market still remains superior to our legal prescription market. The quality, and standard of products is consistent for me, the prices have remained steady for years, and the customer service has always been first rate.
The legal market is stressful. The medicinal cannabis subreddits are full of people going through all sorts of unnecessary drama to receive their medication, if they receive it at all.
Delays aren’t just common, they are expected, as is having your first (or second, or third) choice of medication unexpectedly unavailable for weeks, without explanation. And then when it does come back into stock, there’s a rush on it, and they quickly run out again.
And if the random availability wasn’t bad enough, the products themselves can vary. One batch of your favourite strain could hit just right, and then the next prescription for the same strain, does nothing for you. There is no consistency, and much of what is sold, is very dried out, lacking any aroma, or terpenes.
Whether you source it from the legacy, or legal markets, there is a superior third option for sourcing, but you’re not allowed to use it.
The Second Elephant in the Room
In many places, where cannabis is legal, growing your own at home is permitted. This is a no-brainer, as patients can produce their own high quality medication at home, much cheaper than they can buy it from either the legal, or the legacy market.
Growing quality bud is a skill, but it is one that most people can master given the time, especially if they’re motivated. And who would be more motivated than someone suffering medically, who wants to keep their costs down, during a global financial crisis!?
Growing your own should be at the very heart of our drug laws, especially medicinally. It should be a cornerstone of the policy, instead of leaving greedy corporations to produce substandard products. As far as elephants and rooms go, I’d say this is a massive one.
To sort of paraphrase Moses, “Let my people GROW!”
One Last Room, One Last Elephant
Medicinal cannabis is a divisive subject, but it is especially divisive within itself. The amount of bickering I see within the cannabis community is depressing.
Don’t we all want the same thing? We don’t want to see anyone arrested for possession, whether they have a prescription or not. We all want cannabis use to be seen as the positive, life enriching thing that it is, don’t we? We want it legal for all.
Having a prescription is meant to shield you from arrest, but it doesn’t, as there have been reports from all around the country of legal patients running into trouble with the law. That shouldn’t happen. Many people get prescriptions just to remain within the law, but what’s the point when the law doesn’t care?
Prescription or not, people should not be arrested for the possession of any drug. It’s not difficult. We’re all meant to be on the same side. Which is why I am even more confused by the hate for Cancard.
Cancard is a scheme set up by another medicinal cannabis user who avoided a conviction in court by using a medicinal cannabis defence. This victory means everyone who uses cannabis, can use the same defence. Joining the card scheme means you qualify for a prescription, whether you have one, or not.
The patient’s name is Carly Barton, and a few years ago, she decided to stop using the legal cannabis market, and to grow her own instead. Good luck to her, she’s a trailblazer!
I have a Cancard myself, and have been a member of the scheme for several years. They offer police training, and in some parts of the country, that training has helped people like me avoid legal hassles, and in some cases, even keep their medication.
Sadly, much like a legal prescription, there’s no guarantee a Cancard will prevent arrest, or prosecution. It will however, most certainly be a mitigating factor at some point. And that should result in an “NFA”, as in no further action will be taken, since a successful prosecution is unlikely, because of the medical defence.
I don’t understand all the hate. Carly, and Cancard just want to prevent arrests, and have done in many cases. A legal prescription is meant to prevent arrest, and confiscation as well, but that doesn’t always work either.
Can’t we all agree that NO ONE should be arrested, regardless of where they source their medication?
And that’s the final elephant, in the final room.
When the UK government legalised cannabis, even privately, that was a tacit admission that cannabis is medicinally beneficial. No ifs, ands, or buts, about it.
Cannabis is cannabis, whether you grow your own, source it legally, or from the legacy market. If it keeps you healthy, and alive, that is all that matters.
If these were your only two choices, which would you prefer? Would you rather be illegally alive, or legally dead? I’ve already made my choice. I’m still here.
I’m actively trying not to die from a potentially fatal form of epilepsy, among other long term physical, and mental health maladies. If you take away my special private medication, and I croak, that shit is 100% on you. I’m still here because of weed. Lots of us are.
Why can’t we be more like California, and have an actual grown-up, functional, beneficial medicinal cannabis system that’s affordable?
Why are our politicians from both main parties, so out of step with the electorate, the medical community, and the rest of the world on the simple subject of cannabis?
Why do we let our rabidly rightwing media dictate our health policy? That’s the real issue, but there isn’t a room big enough to contain that particular pachyderm.
It’s your body, it’s my body. We all have the innate right to make our own significant health choices that we know benefit us. I know you know this already, but how do we convince everyone else? It shouldn’t be as hard as it has been, and continues to be. But I’m not giving up the fight, I’m still preaching the good word, till my very last breath. And I’m still breathing.
***
After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press and Reuters, and 15 years as a duty news editor for BBC News, Doug – the northlondonhippy is now a full time hippy, and writer. And for the last few years, he’s been #EpilepsyHippy. His life was a whole lot more fun before gaining that new title. For real.
Doug is also the author of “Personal Use by the northlondonhippy.”
“Personal Use” chronicles Doug’s years of experience with mind altering substances, while calling for urgent drug law reform. It’s a cracking read, you will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!
You can also find Doug – the northlondonhippy on Twitter: @nthlondonhippy but only if you look really hard.
And if you want even more, (and who wouldn’t?) you could always check out Hippy Highlights – which is the best of the best stuff on the site, and it’s all free to read. What are you waiting for?
Recreational Use is a Myth
By Doug – the northlondonhippy
The hippy has been giving this a lot of thought, and recreational use of any drug is a myth. You’ll soon agree.
The first drug I ever properly used was alcohol. I started drinking at the age of 13, and I stopped at age 39. Drinking was a social experience, right from the start.
Most people have some level of social anxiety. We don’t like to admit it, but the popularity of alcohol at social events, gives the game away. Alcohol makes it possible for people to be around other people for extended periods of time. It makes us gregarious, maybe even a little giggly too.
Could you imagine a night down the pub, or in a club, or even a dinner party, without social lubrication of some sort?
If booze ain’t your bag, perhaps you like cannabis? Or cocaine? Maybe you’re one of those sober types, who’s just naturally friendly and happy. Lucky you!
For most people, drug use, alcohol, or otherwise, is a social experience. We do it in groups, we do it to be social.
Now, imagine someone who drinks alone. I don’t have to imagine, as after 26 years of regular, social drinking, I hit a rough patch in life, and for 6 months in 2002, I drank alone daily. Snorted coke too, and mixed in the odd MDMA tab as well. I was not having a good time, I was using it all to escape a bad one.
I was abusing booze, and drugs, and to me that makes my use medicinal. I was using it to lift my mood, and briefly escape my troubles. This use was negative; it wasn’t good for me in the long term. My use wasn’t social, and it certainly wasn’t recreational either. It may not have been the most healthy of self medication, but I was definitely self medicating.
I was lucky. I realised the hole I was in, and quickly, and quietly climbed my way out, all on my own. I realised what I was doing wasn’t in my best long term interests, so I gave up booze completely. Cocaine too. One day, I just stopped. I haven’t had either in over 20 years. It’s not some moral victory, it was a health choice for me, and one I was glad I made.
Recreational drug use is a myth, meant to make you feel shameful guilt about indulging.
After thinking about this for a very long time, I’ve reached the conclusion that all drug use (including alcohol) is either social, or medicinal, once you accept that all medicinal use isn’t always beneficial, or positive.
When I first started smoking weed, it was within a social group. We all got high together. And then I bought a bag of weed for myself. I sparked up a joint on my own for the first time, and realised it made me feel better, physically, and mentally. Without it being explained to me, I naturally worked out how to self-medicate with cannabis. I didn’t realise it at the time; it took many years to truly comprehend that I was self-medicating.
I’ve smoked cannabis for over 40 years, and I can’t recall the last time I had some recreationally. I use it to feel better, to reduce my anxiety, and my depression, and have done since I started. I take enough to take the edge off, to allow me to function like a normal person.
I couldn’t have lived my life the way I have, worked all the jobs I’ve done, or even traveled to war zones, without the medicinal benefits of regular, daily cannabis use.
I’m old now, and I take a load of prescribed pharmaceuticals every day. I don’t view cannabis any differently from the 10 prescription tablets I take daily. They all play their part in keeping me alive. Matter of fact, cannabis helps me with the side effects from the other medications I take, and I probably couldn’t tolerate them all without it.
The school of thought on psychedelics has evolved. People are understanding that their use is far more medicinal than it is recreational. You can do a lot of good for your mental health through the smart use of psychedelics.
When I went through my shroom phase, back in the early oughts, I think I had the best mental health of my life. There was a loophole in UK law for a few years, that saw actual fresh magic mushrooms legally available to purchase online, and in Camden Market. It was a sad day, when the government sealed that loophole, and the sales ceased.
Shrooms helped lift my chronic depression, and pulled me out of a different hole in 2003. I was able to get my life back on track, and I kept it there until epilepsy decided to take over 15 years later.
And even with the epilepsy, my cannabis use has helped mitigate it somewhat. I know cannabis could be even more beneficial, if I could get the right balance of cannabinoids into my system consistently. I wish the NHS prescribed it.
If someone goes home every night after work, and downs a bottle or two of wine on their own, or even with their partner, that use is not social, is it? It’s medicinal. Alcohol dependency is real. And it’s a medical issue, not a moral one.
Alcohol withdrawal is also real, and it is just as bad as coming off heroin. Alcohol can be lethal too, and has contributed to the deaths of more people that I’ve known over the years, than every other drug combined. It’s legal status obscures these facts.
Drop an E at a club? Medicinal. You’re doing it to expand your consciousness. Drop it with a group, it’s social too. Sometimes, it can be both. They’re not mutually exclusive.
Shooting smack in a back alley? Does that sound like fun? Does it sound recreational? Of course not! It’s definitely medicinal, and whatever you’re trying to escape from, I hope it helps you. Is it ideal? No, not even close. That’s why many good people want to open supervised injection facilities. Medicinal again. Open them everywhere!
Addiction and dependency are medical issues. Tobacco, heroin, cocaine, and alcohol are all physically addictive.
I’m dependent upon cannabis, the same way I’m dependent upon my epilepsy medication, or blood pressure medication to keep me alive. I couldn’t live without any of them. It’s all medicinal use.
Whatever your drug of choice, if you share the experience with a group, your use is social. If you use it on your own, or with a close partner, your use is medicinal, whether it is beneficial or not.
Recreational drug use is a myth, and it’s used to guilt, shame, and punish us. Don’t fall for it. As if enjoyment of something should lessen it’s significance, or usefulness. Your use is either social, or medicinal. There is no in-between, and there should be no guilt, ever. Just be as healthy as you can, for as long as you can, no matter what you have to take to get by in this life.
* **
After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press and Reuters, and 15 years as a duty news editor for BBC News, Doug – the northlondonhippy is now a full time hippy, and writer. And for the last few years, he’s been #EpilepsyHippy. His life was a whole lot more fun before gaining that new title. For real.
Doug is also the author of “Personal Use by the northlondonhippy.”
“Personal Use” chronicles Doug’s years of experience with mind altering substances, while calling for urgent drug law reform. It’s a cracking read, you will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!
You can also find Doug – the northlondonhippy on Twitter: @nthlondonhippy but only if you look really hard.
And if you want even more, (and who wouldn’t?) you could always check out Hippy Highlights – which is the best of the best stuff on the site, and it’s all free to read. What are you waiting for?
The Final Piece of the Puzzle
By Doug – the northlondonhippy
The hippy has a huge diagnostic breakthrough regarding his epilepsy. It completes the puzzle of the last 5 years of his health. And it was staring him in the face the entire time.
Intro
Last week, while writing THIS THREAD on Twitter (the website absolutely no one calls “X”) to mark Epilepsy Awareness Month, I became acutely aware that I have more than one type of seizure, and have done for the last, at least, 5 years.
This is a huge revelation of massive proportions. Well, for me it is anyway. It is the final piece of my health puzzle.
The Backstory
When my symptoms first started five years ago, there were two main ones. The first was waves of depression; immense sadness, followed by the feeling of impending doom.
In time, I associated this with my tonic-clonic seizures, and thought it was my aura, the herald of a seizure. And I was correct, but it was also something more, as you will see.
The other symptom was harder to describe, and I used to call them “brain blips” or “time skips”, where I would just lose a few moments (minutes?) of time, and wonder what the hell just happened. Whatever it was, it wiped my memory of itself, I would often quickly forget them.
I had an incident with my car in October 2018, that I have written about before. I think it was my first brain blip, or time skip, certainly the first I documented. I was driving to work, and somehow ended up with 2 flat front tyres, and on a road near my office I didn’t recognise. I never knew exactly what happened that night. I didn’t even think about it again for a couple of years.
A month or two after that, I started noticing the waves of depression, and the brain blips, but I didn’t discuss either with my doctor for a few more months, even as my symptoms progressed.
I was scared. I did a Google search, and it suggested I had MS. I wrongly assumed it was correct.
I’ve written about my last night of work several times as well. I’ve been fixated on it, as it was such a massive turning point in my life.
That night, I was having wave after wave of depression, the sadness and doom I mentioned. I was also having the brain blips too. I had a very public meltdown, left the office broken, and went to see my GP that very morning after work.
I asked my doctor for two things that day. I asked to be signed off work, and I asked for a referral to a neurologist. I never went back to work, and I didn’t see that neurologist for 6 months. And when I did, he misdiagnosed me, and I never went back to him either.
Learning to live with it
I went around two years after stopping work, before I had my first proper full-on seizure, but in the intervening time, I continued to have the waves of depression, and brain blips. I just normalised them. I knew something was still wrong with me, but I had no idea what it was, and neither did the doctors at the time.
After several incidents of multiple, convulsive, tonic-clonic seizures, a few ambulance rides, and blue light visits to A&E, I was finally diagnosed with Right Temporal Lobe Epilepsy, by the third neurologist I saw. Yes, it took visits to three different consultants before I was properly diagnosed.
After my diagnosis, the brain blips and waves of depression continued. I assumed my brain was trying to give me a seizure. I would experience what I thought was my partial aura, and then not have a full-on seizure, thinking the medication was preventing it from reaching it’s full, destructive potential. This partial aura was so frequent, to the point where I just ignored them.
I nearly went a year without a seizure, once I started treatment via medication. And four days before a full year, I had tonic-clonic, and it was preceded by the aura I have described. Sadness, doom, and a jamais vu is the full sequence I experience, before a massive seizure.
As I had some memory of the seizure that time, it gave me food for thought. I had two more major seizure incidents after that, and both had the same aura around them. I felt it the day before, and on the day I had the proper seizures.
I started logging the partial-aura’s in my epilepsy diary after that. I should have been doing it all along, but I really didn’t see the need if I didn’t go on to have a grand mal seizure. I thought they were the only type of seizure I had.
Those notes from September of this year regarding my partial aura would become extremely useful.
The Revelation
If you’ve been following my epilepsy progression, you might have noticed me fixating on what I call the period before my first proper grand mal, or tonic-clonic seizures began.
I’ve described that time as the slow onset of my epilepsy. I’ve called that time my pre-epilepsy period as well. But the fact is, I had full blown epilepsy even then, only I didn’t realise it until last week. I told you it was a big revelation.
How can you not realise you have epilepsy? There are more than one type of seizure, and I didn’t realise what I was experiencing for over 2 and 1/2 years before I had convulsions, were something called “focal seizures”. I knew I was experiencing something, but I lacked the understanding, and vocabulary to express it with any clarity. I do now.
When I was writing the Twitter thread I mentioned, I was looking deeper online into different types of seizures. Might sound strange, but since I knew I had (what I thought was only) tonic-clonic seizures, I never really bothered to look into the other types. I really wish I had, because when I did last week, the descriptions of focal aware, and focal partial aware seizures related to temporal lobe epilepsy, were nearly word for word, how I described what I’d been calling my partial aura.
When I began logging the partial auras a couple of months ago, I tried to do it as soon as I experienced them, as I know there is a big element of memory wiping that happens with them.
This is a cut and paste from my actual epilepsy diary:
“2-3 Sept 2023 – don’t usually log these, but had this once on 2nd, and twice on the third. Feeling of immense sadness, doom, and my heart rate surged to 115ish each time. Lasted for a few minutes.
Felt like my aura, but unsure if the meds prevented worse, or it just didn’t reach that level. Will try to log these more, but often they happen, and pass and I just forget them. I normalise stuff too easily.
Update: I didn’t have a full on seizure, but over those 2 days, I had 5 episodes in total, where I experienced what I now know are the lead-up symptoms, without reaching a full on seizure. The sadness, the impending doom, but something new, or something I hadn’t noticed before… some confusion, and words stop making sense, and sound like gibberish.
It comes on suddenly, and starts with a weird feeling that is difficult to describe, moves through the phases I described, then fades away. It lasts a few minutes.
My Apple Watch records these incidents as one minute of exercise, and my heart rate elevates alarmingly, so there are tangible, recorded physical symptoms to go along with the neurological ones. And my resting heart rate remains elevated afterward for days.
The heart rate thing is the same with the ictal nausea and vomiting, as well as the seizures. Especially the seizures, and even more so with my last one.
I am wondering if what I had over the weekend, the 5 episodes, were some other type of seizure. Focal seizures might fit my symptoms, but would need a neurologist to confirm that. Or it could be my meds preventing my brain from it going full-on, and I’m just getting the rumblings? I have many more questions, than answers.”
As you can see, I even questioned a couple of months ago if these were focal seizures. And then promptly forgot about it, as I have been doing with these incidents for the last five years.
Focal seizures would explain so much of what I haven’t understood about the first couple of years of my illness. It explains the incident with the car, the brain blips, and the waves of depression. It explains everything.
Most of all, it explains how epilepsy cost me my job. I’ve had documented tonic-clonic seizure clusters, my record was 6 in one day. If I could have clusters of tonic-clonics, why couldn’t I have clusters of focal seizures as well? I think I can. And I did.
The very last night I worked, I am convinced I had multiple focal seizures, a cluster of them. I’ve worn an Apple Watch for years, since the first model was released. I have heart rate data going back to that date.
As I mentioned, when I have the focal seizures, or any epilepsy related activity, my heart rate increases dramatically. I also know the date of my last ever shift, as it is burned into my soul.
I looked up my heart rate during my last nightshift, and it went up to 122bpm, while I was seated at a desk. My normal resting rate is in the low to mid 60s. Only a very brisk walk gets my heart pumping like that, or something epilepsy related. To me, that’s as close to confirmation as I am going to get, that my new theory is correct. The evidence is good enough for me, and I think my neurologist will agree.
I haven’t spoken directly to a neurologist in a very long time, but I finally have a telephone appointment next month, with the doctor that diagnosed me, and understands my complex condition. And boy, oh boy, do I have a lot of questions!
All I need to do is not die before then. And that might be tricky, as I am expecting a new tonic-clonic seizure in the next month. My seizures keep getting worse, the last one nearly killed me. Who knows what the next one will do?
But if I survive long enough to make my neurologist appointment, I am aiming to get some sort of treatment plan in place, so I might stop worrying about dying every single goddamn day. That would make a good change, wouldn’t it?
After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press and Reuters, and 15 years as a duty news editor for BBC News, Doug – the northlondonhippy is now a full time hippy, and writer. And for the last few years, he’s been #EpilepsyHippy. His life was a whole lot more fun before gaining that new title. For real.
Doug is also the author of “Personal Use by the northlondonhippy.” “Personal Use” chronicles Doug’s years of experience with mind altering substances, while calling for urgent drug law reform. It’s a cracking read, you will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!
You can also find Doug – the northlondonhippy on Twitter: @nthlondonhippy but only if you look really hard.
And if you want even more, (and who wouldn’t?) you could always check out Hippy Highlights – which is the best of the best stuff on the site, and it’s all free to read. What are you waiting for?
Now, Hear This
The hippy looks back at the roots of his lifetime love of modern music, through the songs he grew up with, and technology of the day that played it for him.
His journey began when he was 2 years old, and it started with the Beatles, and a couple of years later, Motown and more.
As you’ll see, these memories turned out to be a lot more bittersweet than expected.
Age 2
Growing up, my mother told me this story many times, of not long after I first began talking, I also started singing. And the very first song I ever sang was “I Wanna Hold Your Hand” by the Beatles.
The single was released around 10 months after I was born, and it was still a hot hit on the radio when I was 2 years old. My mother told me we used to hear it a lot in the car.
One day without prompting, I sang along with the chorus, which delighted my parents. Even at the age of 2, I had excellent taste in popular music. I like to think at the tender age of 60, that I still do.
Age 4
My family moved from north Jersey to down the shore in Asbury Park when I was 1 year old. We lived there for three years, until I was about four. We lived in a two family house.
My earliest memories of my life are based in that very house, and around Asbury Park. I can still picture the kitchen, the living room, my bedroom, and the steep main staircase that led up to the entrance of our place.
The upstairs bit was my ours, and the downstairs part of the house was rented to another family. They were a married couple, a little older than my parents, and they had a couple of grown children; a son and a daughter.
Their names were Carmen, and Emily, and their daughter’s name was Sara. I think their son’s name was Anthony, but I’m not sure. I didn’t really know him.
Carmen owned the Mobile petrol station in Asbury. I remember going there with my dad as a child, and petting the gas station guard dog, a friendly, happy German Shepherd, who wasn’t quite as friendly on his own, when he protected the station at night.
Carmen and Emily already lived in the house when my parents purchased it, and they would all go on to become very good friends. They remained close for decades, until Carmen and Emily passed away many years later. They were nice people.
When I was around 4, my mother called me into the living room, and Emily and her daughter Sara were already there. Sara would have been in her early 20s at the time.
They told me Sara was losing her hearing, and she wanted to give me her collection of 45rpm pop music records, because she couldn’t listen to them any more. It was a tall stack of singles, in some sort of plastic carrying case.
My mother said, “What do you say when someone gives you a gift, Doug?”
“Thank you, Sara!”, I replied enthusiastically. It was like an unexpected Christmas morning!
I didn’t really understand the tragic context of this gift, I was only 4 years old, but I was certainly excited. I couldn’t wait to go into my bedroom, and play both sides of every one of those records on my Show’N’Tell. It was my very first record player.
A Show’N’Tell was a popular kid’s record player from the 1960s. that had a built-in screen, and was used to tell stories with still pictures projected on the internal display. You put a cardboard strip with the graphics on film into the top, then played the record. You had to advance the pictures manually when the story narration beeped by pushing the strip down further. It was easy. I had a bunch of stories for it, but the only one I can recall with any certainty is Puss’N’Boots.
My mother showed me how to use the 45rpm adaptor, and adjust the RPM rate on the turntable, so I could play the 45rpm records on my little kiddie Show’N’Tell.
I was entranced, these were grown-up records. It was lots of early rock and roll, like the Beatles, and the Stones, plus the very best of Motown, and Atlantic Records too. It was a fantastic, and comprehensive collection, that looking back, I very much wish I still had.
It’s weird the details I can still recall from this seminal moment in my young development. I didn’t know where to start, so I just randomly picked a record. It’s not like I knew how to read. It was 1967, and I was 4 years old.
I carefully placed my first single on the platter, and I turned the record player on. Once it was spinning, I gently placed the needle on the outer groove.
My ears were suddenly awash with the most amazing sound I’d ever heard in my very young life. It was nothing like I’d ever experienced before. It didn’t sound like the Beatles, it didn’t sound like the children’s songs on my Show’N’Tell records either. It was so unique, and it made me feel like I was a real big boy, listening to grown-up music. I loved it!
That first song I played was “You Really Got A Hold On Me” by Smokey Robinson and the Miracles, and I think of it as the first single I ever owned. I know it came in a collection of many others, but it was the first one I played, and I don’t think I can overstate the impact it had on me at the time. The words went way over my head, but the sound. Oh my god, that sound!
I still get the same feeling of pure joy when I listen to it today. You will too, from that classic opening piano hook, to the soaring, mournful vocals. That girl had a tight grip on Smokey’s heart, and you could feel it in every line.
“I don’t like you, but I love you”. It hits even harder when the words mean something, but even when they didn’t as a child, I still felt it.
This carefully curated collection was the very best pop music from early to mid 1960s. I struggle to recall every single tune, but there were some standouts.
I mentioned Atlantic Records, because of the Drifters. “Under the Boardwalk”, “Up On the Roof” and “Save the Last Dance” were all there.
At the age of 4, I thought the boardwalk in Asbury Park was the only boardwalk on the planet. I also thought it was the most magical place in the world, and I just knew they were singing about it in that song. As I swayed to the music, I closed my eyes, and pictured the amusements along the shore.
Clearly I did not understand the true nature of the activities taking place under the boardwalk. That went way over my head too.
There were quite a few early Beatles singles as well, and I can recall the old green Apple logo on the labels. Baby, you can “Drive My Car” is the one I remember most. Beep-beep beep-beep yeah!
By far, the majority of the singles in the collection were Motown. Besides Smokey and the Miracles, there were The Supremes, Stevie Wonder, Marvin Gaye, The 4 Tops, The Temptations, the Jackson 5, Martha and the Vandellas, and probably a whole lot more that I can’t recall. I played all of those records over, and over on my Show’N’Tell.
We left Asbury not long after that. My new record collection got packed away when we moved to Oakhurst, in Ocean Township. We got out of Asbury a few years before riots rocked the city.
Age 13
The Show’N’Tell was replaced by a cheap, portable record player that I used for a few years, but when I was 13 years old, my parents bought me my first proper stereo.
Many of my friends were Jewish, and age 13 was their bar mitzvah year. I think my parents thought I felt a bit left out, since I kept being invited to these massive bar mitzvah receptions, as my friends were showered with many big lavish gifts. I always guessed that’s why they made more of a fuss than usual over my 13th birthday.
My father and I went to a hi-fi shop up on Route 35, and we went into the sound room, to check out different systems. The salesman convinced my father to buy me a Sanyo quadraphonic system, with all the bells and whistles.
The system had a record changer that could play multiple discs, an AM/FM stereo radio receiver, and an 8-track tape deck that could record as well as play them. I knew I’d be driving in a few years, and I could make my own 8-tracks for the car.
Quadraphonic systems never took off, as you might have guessed, since many of you will have never heard the term before. It meant it had 4 speakers, instead of the usual two like a traditional stereo. The salesman said that all LPs and singles would soon be released in a compatible format, so it was future-proof. That never happened, but it was still a great sound system.
We got it home, and set it up in my bedroom. I didn’t have many records to play, but then I remembered the old collection of 45s from my early childhood. I knew I still had them, and I fished them out of my bedroom closet. They were still in the same old plastic carrying case.
And then I spent the rest of my 13th birthday blasting out all my old favourite classic Motown hits, and more… And they never sounded better!
Age 16 and a 1/2
I got my learner’s permit 6 months before my 17th birthday, and I was excited to start driving. My first car was a Pontiac Firebird Formula. I didn’t keep it long, it was way overpowered for a teenager, and it was a gas guzzler, but it did have an 8-track tape deck.
Someone gave me a copy of James Taylor’s 1979 album, “Flag”, and on it was his cover version of “Up on the Roof”. It immediately brought back memories of the original.
And then once again, I remembered the 45rpm record collection that Sara had given me, and I got it out of the closet. Only this time, I recorded many of the songs onto 8-track tapes.
It finally hit me, how I got this collection. In the 12 or so years I’d had all those records, I never really considered how they came to be in my possession. I’d never really considered the tragedy that inspired Sara’s generosity. Sara’s hearing loss, was my musical gain.
I knew my mother was still friends with Sara mother, Emily. So I asked my mom about her.
My mom explained that Sara was completely deaf now, but she didn’t let it slow her down. She was married, she had children, and she had recently been the first runner-up in the Mrs. New Jersey contest, “in spite of being hard of hearing”. The words in quotes aren’t mine, but are lifted directly from the Asbury Park Press photo caption at the time.
And not Miss New Jersey, but Mrs. New Jersey, a beauty pageant of some sort for married women that was staged back in the 1970s. A quick search online tells me it is still going on today. Who knew?
In all that time, it never dawned on me to ask about Sara, or to consider the painful circumstances that inspired her gift to me. I can remember feeling a profound sense of gratitude. She literally gave me the music I grew up with; it was the soundtrack of my youth.
I’d developed my own tastes over the years, and have already written about my deep appreciation of Bruce Springsteen. He grew up on the some of the same music I did, as did his friend Southside Jonny.
Southside Jonny and the Asbury Jukes were just starting to break big around this time, and I had one of their early records. On it, he covered Sam Cooke’s “Havin’ A Party”, which was yet another track in my collection of 45s. I love both versions, but Southside made that song his own.
The foundation of my musical tastes is so deeply rooted in that collection of 45rpm records. I don’t know what happened to them. When I moved out of my parents’ house, I don’t think I took them with me. And that, was that.
Age 60
Last spring, my original set of AirPods died. They were 5 years old, and served me well, so I replaced them with a new pair of AirPod Pros. With the purchase came a free 6 month trial of Apple Music.
When I bought my first iPod in 2005, I ripped MP3s from every CD I could find in the house, and every CD I bought after that. I started buying digital tracks and albums a few years later, and played them all on my iPhone.
I had a decent collection, but clearly I didn’t have every track ever recorded. A trial with Apple Music came close to fixing that, so I signed up. It pretty much played whatever songs I asked for, and could even find some obscure versions of rare tracks. Colour me impressed.
“Hey Siri, shuffle Springsteen”, or “shuffle Southside Jonny and the Asbury Jukes.” No problem. Led Zep? The Beatles? The Kinks? The Stones? All good.
And then I tried some genres, and I thought of one I hadn’t listened to in ages. “Hey, Siri, shuffle Motown”.
She replied, “Alright, now shuffling Motown essentials.”
After a few tracks, Smokey Robinson and the Miracles came up, and I heard the first single I’d ever owned, as “You Really Got A Hold On Me” roared out of my speakers. It was the first time I’d heard it in ages. I stopped whatever I was doing, and listened intently.
I still loved the track that day just as much as I did that first time I heard it when I was 4 years old. It was some 56 years later, and it still filled me with as much joy as it did that first time. And then I sobbed.
I sobbed with mixture of joy, and sadness. I was happy that the music of my childhood, and youth, still resonated with me. It still filled my heart with joy. And I was also overcome with sadness; the sadness of loss, and the tangible realisation of the passage of so much time, and of so many people I’ve cared about over the years who are no longer there.
And then I remembered poor, dear Sara. I hadn’t thought of her in such a long time. Her generosity, born from her loss, shaped my musical tastes for my entire life. And in that moment of realisation, the idea for this piece was born.
My musical journey began with a stack of carefully curated 45rpm records. That collection had some of the finest popular music of the early to mid 1960s and it was given to me by a deaf woman, when I was a pre-schooler. No wonder it took me so long to grasp the significance.
That collection was assembled by someone that lost their ability to enjoy the music they so clearly loved, because they gradually were becoming profoundly deaf. And from their unfathomable loss, the foundation of my musical tastes was born.
It was a priceless gift, given from someone who paid a price higher than I can possibly imagine. It took me years to fully appreciate all of this, and even now, I’m not sure if I can truly express how much these songs changed my life. And thanks to the evolution of technology, those tunes all remain part of my life to this day.
Sara
I really didn’t know Sara. I’m sure the day she gave me the records wasn’t the only time I met her, but I doubt I saw her more than half a dozen times in total. Her mother, Emily, and my mother were close friends for years.
I looked for Sara online, and am pretty sure I found her. It’s scary easy to find people online in America with just a few details. She’s still alive, but she no longer lives in NJ.
I also found Sara’s first engagement announcement from the local newspaper in 1962, before we lived in Asbury. It’s how I found the address of my family’s house in Asbury Park. I knew the street name, but I couldn’t for the life of me recall the house number. Remember, I was only 4 years old when we moved out.
It’s also how I learned Sara’s parents were living there when my parents bought the place. I didn’t realise they lived in the house before we did. I guess I never thought about it.
It said she was engaged to a guy serving in the military, in the early 1960s. That could have meant Vietnam. I don’t know what happened, but when she was a contestant in the Mrs. New Jersey contest more than a decade later, she had a different surname from her fiancé mentioned in the clipping. Did they break up? Did he get killed in action? I have no idea.
I also found that photo from the local paper of her being a runner-up in the Mrs. NJ contest. In truth, I misremembered, I thought she was the winner of the contest, and I was trying to fact-check myself. I’m glad I did, for the sake of accuracy, and for finding the photo. That was a bonus.
I debated contacting Sara, sending her a letter, and sharing my story, but in the end I decided against it.
Maybe she would remember me, maybe she wouldn’t. Maybe she wouldn’t want to be reminded of such a sad time in her life. Would she even remember such a small, inconsequential moment? It’s me that found meaning in it, perhaps it was one of the worst days of her life.
If I could communicate with Sara, I’d want her to know that she’s one of the few people in my life that made such a huge contribution to who I am today, without ever knowing it. She changed my life in such a positive way. She gave me the priceless gift of music, just as she was losing her ability to enjoy it herself.
I hope you had a good life, Sara. One day when I was four years old, you changed mine in a massive way. I wish you knew. Thank you, Sara. Thank you.
* * *
After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press and Reuters, and 15 years as a duty news editor for BBC News, Doug – the northlondonhippy is now a full time hippy, and writer. And for the last few years, he’s been #EpilepsyHippy. His life was a whole lot more fun before gaining that new title. For real.
Doug is also the author of “Personal Use by the northlondonhippy.” “Personal Use” chronicles Doug’s years of experience with mind altering substances, while calling for urgent drug law reform. It’s a cracking read, you will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!
You can also find Doug – the northlondonhippy on Twitter: @nthlondonhippy but only if you look really hard.
And if you want even more, (and who wouldn’t?) you could always check out Hippy Highlights – which is the best of the best stuff on the site, and it’s all free to read. What are you waiting for?
My Next Seizure
I worry about so many different things, that it’s not funny. But the one thing I worry about the absolute most, is my next seizure.
There are lots of big things to worry about in this life, like climate change, or more specifically our lack of action to meaningfully address it with any urgency. I also worry in the same way about world peace, or more specifically our lack of sustaining that, too. But since my epilepsy began a couple of years ago, what I worry about more than anything, is my next seizure.
I could drone on for ages about my previous seizures, and already have, as you may have noticed, but what occupies my headspace continuously and relentlessly, is my concern over my next seizure.
Will I be at home when it happens? Or will I be elsewhere? Will I be seated, or will I be standing, and fall down hard? Will I hit my head, and end up concussed? Or maybe I will sprain my ankle again? I know I will bite my tongue. I always bite my tongue, hard enough that it bleeds.
Will I piss myself? Will I soil myself? I hope not, they are both very unwelcome extras.
Will I wake up in an ambulance? Will I wake up in A&E? Will I wake up at all? And if I do, will I realise I even had a seizure? Will I remember anything about it?
Will I have a heart attack? Will I stop breathing?
Will I die?
I’ve had cluster seizures in the past, that means more than one seizure at a time. My record is six in one go. I’ve been in status epilepticus before as well, that means not recovering properly in between. Both of those things can be fatal without an urgent medical intervention. Been there, done that. And my most recent seizure nearly resulted in a heart attack, and I had shallow, irregular breathing along with it.
All of those things can potentially result in SUDEP, which stands for Sudden Unexpected Death in Epilepsy. I’m at real risk of dying from my next seizure. Or the one after that. Or the one after that. You get the idea.
I’ve had 13 heavy duty, tonic-clonic seizures, across 6 incidents, since all this started back in April 2021.
The first three incidents happened before I was diagnosed, and started treatment via medication. The second three incidents happened after treatment began. The first three incidents got progressively worse. The start of treatment reset that somewhat, but the second lot of seizures were then also progressively worse.
I learned why. Some people, like me, respond to the epilepsy meds well at first. And then the drugs begin to lose their effectiveness as you develop resistance. It’s called a “honeymoon period”, and for me, the honeymoon is nearly over, again.
A numbers game
(Author’s note: This section is dull. If you’re not detail oriented, you can read the first two paragraphs of this section, and then the last two paragraphs, and get the gist of what I’m saying. I didn’t edit this section down, because it illustrates the depth, and intensity of my obsession.)
Trying to predict when my next seizure will happen is more difficult than predicting the weather, or the winner in a horse race.
You can look at the data, the stats, whatever, but there are too many unknown factors to make an accurate call. That doesn’t stop me from trying. I’d like to be prepared for my next seizure. As much as I’m able to be, anyway.
I’ve made a simple chart, with incident dates, the number of days in-between, and where noted, the number of multiple seizures I had during that incident, to see if there is any sort of discernible pattern:
Incident 1 – 29/4/21 – Day Zero (2 seizures)
Incident 2 – 6/8/21 – Day +99 (2 seizures)
Incident 3 – 18/9/21 – Day +43 (142 days total) (6 seizures)
– Treatment via meds began the same day as incident 3 –
Incident 4 – 14/9/22 – Day +361 (503 days total)
– Dosage of medication increased –
Incident 5 – 3/5/23 – Day +231 (734 days total)
– Dosage of medication NOT increased –
Incident 6 – 23/7/23 – Day +81 days (815 days total)
– Dosage of medication increased –
With pre-emptive apologies to all doctors, and mathematicians, let’s play with those numbers.
From my first incident, to my most recent, is 815 days total. I had 6 incidents in that time, which works out to be around one incident every 136 days.
My first 10 seizures occurred across 3 incidents, as they were clusters. If I use the same formula with the number of seizures instead, of incidents, the average gap leaps up to one seizure every 63 days. Neither number is particularly helpful since my longest gap between seizures was 361 days, and my shortest was 43 days.
How about if we average the gaps between incidents? There are 6 incidents, but only 5 gaps to measure, for the same total of 815 days. Dividing by 5 gives us 163 days, which again, isn’t a particularly helpful prediction.
One last try. I’ve put my incidents into 2 groups, pre and post treatment via medication. So let’s put the first three incidents aside, as they happened prior to any medical intervention, or diagnosis.
After incident 4, my medication dose was raised. It was not raised after incident 5. I don’t know why, but it was raised again after incident 6. The medication clearly works, for a while anyway, and then a seizure breaks through. The lack of an increase in my meds after incident 5 is probably why incident 6 happened so soon after the one before it.
Based on the relative effectiveness of my meds, I went 361 days without a seizure after initially beginning treatment, and then another 231 days after my dosage was increased following incident 4. The average between the two is 296 days. But if we include incident 6, the average drops to 224 days, which still seems too long to me.
What happens if we average all of it? The gaps, and the average gaps, and the other predictions I’ve made? I have done the calculations and have come up with 170 days, which is reasonably close to some of my earlier predictions, and it comes from the most complex formula in this process. And 136 days comes from my most basic prediction.
So my final prediction is that my next seizure will happen between 136 and 170 days after my most recent incident. My most recent incident was 23/7/23, 136 days after that is the 6th of December 2023. And 170 days after my last seizure is the 9th of January 2024. Put it this way, if I haven’t had my next one by the 9th of Jan, I am going to start to really, REALLY worry. Hey ho.
Will I have a seizure on one of those dates for sure? Who knows? Anything is possible. That said, it does give me a rough idea how long I could be safe. Not that I can trust any of this made up BS, any more than I can trust my faulty, misfiring brain.
There is no real answer
I did an awful lot of mathematical wanking to come up with those ultimately meaningless predictions. I could have my next seizure tomorrow. I could have my next seizure next week, next month, or next year. Or, in my dreams, I would never have another one again.
That’s the goal, that is my dream, to remain seizure-free for the rest of my life, but I now know that’s unlikely. My seizures aren’t an “if” any more, they are definitely a “when” at this point. I’ve learned that much in the last couple of years, and it was a hard lesson.
After my next seizure, they will raise my current medication to the maximum dose. After that, when I have another seizure, I will be looking at transitioning to a different medication, and starting the honeymoon period process all over again. FML.
There are too many variables, and too many unknowns to reliably predict when I might next have a seizure. I wish I could predict it, and prepare for it, but alas, I cannot. No one can.
One of the many things I’ve learned since being diagnosed with this miserable affliction is that no two people experience epilepsy in exactly the same way. While we all may have seizures, how we got there, and what we experience around them, varies widely.
What’s Your Flavour?
My flavour of epilepsy is called Right Temporal Lobe Epilepsy, or RTLE. It’s considered rare, but I have encountered a few others online who also have it. I was lucky to be finally diagnosed correctly, and it was my third neurologist who worked it out. And that diagnosis was confirmed via an EEG, because this time, they knew where in my brain to look.
I first had what I now call pre-epilepsy symptoms 5 years ago. My first documented one was in October 2018, two and a half years before I would have an actual seizure.
Why do I say “documented”? I say that because it involved an incident with my old car, that friends of mine also recall. I don’t drive any more, I had to give it up.
I had some sort of brief blackout while driving to work in central London one night, that resulted in both my front tyres being flattened. It took me ages to connect this event to my illness, but when I did, it made me realise that my epilepsy didn’t just suddenly appear in 2021 out of nowhere.
Some people sense that something is wrong just before they have a seizure. That’s referred to as an “aura”. Think of it as a herald, before catastrophe strikes. Everyone’s aura is different. It can be a sound, a smell, or a sensation or feeling. My aura, when I can recall it, is emotional, which is a feature of RTLE.
It’s weird having to think of my emotions as potential symptoms, but that’s where I am, and sadly, where I have been for 5 years. Only for a good chunk of that time, I didn’t realise it.
Allow me to explain. My full aura leading up to a seizure is a sequence of three emotions. For the first, I feel an immense sense of sadness, akin to deep grief. That’s followed by the second one, which is a sense of impending doom, as if a nuke was about to obliterate London within minutes.
Imagine deeply feeling both of those emotions, suddenly, and without warning, but without a genuine external source, or justification for experiencing them. It’s disorienting.
The third emotion I experience is the weirdest of the three, and a concept I wasn’t even familiar with until I read about it within the context of auras: A “jamais vu”. It is the opposite of deja vu.
A jamais vu is the feeling of weird unfamiliarity in a situation or place you know is extremely familiar. Imagine being in a fake version of your own home. It looks like your place, but something feels off, like it’s a simulation. It’s eerie, and more than a bit creepy. And then I black out from the seizure.
I occasionally experience what I call a partial aura, where I have the sadness, and the doom, but I don’t go on to have the jamais vu, or a seizure. I have experienced this many times, and have also noticed it often happens the day before, and again just before a seizure.
When I have the partial aura, I brace for impact. I stop whatever I’m doing, and wait for it to either pass, which it mostly does, or go on to the jamais vu, and then a seizure. It’s a continuous, endless worry, waiting for my emotions to alert me. I’ve learned not to ignore, or dismiss it when it happens. I expect it daily, the same way I expect my next seizure.
The partial aura I’m describing began around the end of 2018, and it was frequent. Only way back then, I had no idea it was anything other than poor mental health. It caused me to have a breakdown, which I described at the time as “chemical, and the depression coming in waves”. I was close, it wasn’t chemical, it was electrical. And it was confusing. It wasn’t just poor mental health, it was poor mental health as a symptom of a much larger issue, the onset of my epilepsy.
At the time, I thought I had MS, thanks to Dr. Google, who I should never consult, yet I still do. I asked my GP for a referral to my first neurologist during the same appointment when I asked to be signed off work due to my breakdown. I wasn’t sure at the time that my neurological concerns were linked to my mental decline, but I did suspect it enough to search online for what could be causing both together. That’s how I came up with MS.
It’s not just my next seizure I think about, though I’d be lying if I said it didn’t dominate my thoughts. I do re-run my recent health history, seeking connections, and clues that I missed, and that my doctors missed too. It’s a bit tedious, if I’m honest, but epilepsy has completely taken over my life, and a huge chunk of that time is filled with anxiety, worry, and fear over my next seizure.
I never thought about having epilepsy, until I started having seizures. When I was 17 or 18, my mother told me one of her sisters had it. And she was telling me then because she thought I was clear of the risk. I thought that too, that it was a childhood thing. I didn’t know it could begin at any age. Having it in my genetics is the only risk factor I’ve identified. I don’t know why the seizures started. I don’t know what causes, or triggers them either. There is no pattern, there is no common thread that links all my incidents together. They’ve all happened in the morning to early afternoon. That’s all I’ve got, and it’s not much.
I have no control over when my next seizure will happen. It will happen whenever, and wherever fate decides. There is no fate. There’s just a small, defective portion of my right temporal lobe, that occasionally for reasons unknown, causes chaos inside my brain, and puts my body through the proverbial ringer. And it really wants to kill me, it’s made a few attempts already. And there is nothing meaningful I can do to stop it. I just keep taking the prescription meds, plus massive daily doses of my special private medication, and hope it staves off my next seizure for as long as possible. And until that happens, I will be continue to spend a ridiculously stupid amount my waking hours worrying about my next seizure.
After a 30 year career as a journalist, working for some of the largest news organisations in the world, including Associated Press and Reuters, and 15 years as a duty news editor for BBC News, Doug – the northlondonhippy is now “semi-disabled, and semi-retired”, but he’s still available for hire, if you can put up with his epilepsy. All WFH situations considered. He’s bored.
Doug is also the author of “Personal Use by the northlondonhippy.” “Personal Use” chronicles Doug’s years of experience with mind altering substances, while calling for urgent drug law reform. It’s a cracking read, you will laugh, you will cry, and you can bet your ass that you will wish you were a hippy too!
You can also find Doug – the northlondonhippy on Twitter: @nthlondonhippy but only if you look really hard.
And maybe one day, he will explain why he writes these stupid end sections in the third person. Everyone knows he doesn’t even have a publicist.