An Ocrelizumab Patient’s Concerns Regarding Immunity After Covid Vaccinations

/ Dominic

I started thinking about the information I was learning about this issue so I made a video for theMSguide.com

This then caught the eye of many and amongst them was Professor Gavin Giovannoni at Barts in London. If you are in the MS world it is hard not to have heard of ‘Prof G’. At his request I wrote an article for the Barts MS Blog on the topic. It is all about a patient perspective on how the possibility of how not being able to generate a full immune response to the Covid vaccine stands to impact on the lives of everyone who takes the drug.

Things are changing fast in the Covid world and I am confident that this will be a temporary issue. Nonetheless, I hope it isn’t a long form of temporary. Here is the article:

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I uploaded a video to theMSguide.com a few days ago talking about my concerns as an ocrelizumab patient and how the potential lack of Covid vaccine response stood to impact my life. I am five full infusions into this DMT and the fact that it appears to severely impact the ability to generate a meaningful immune response after a Covid-19 jab is administered is no fault of anybody or anything. It is what it is at the moment and no amount of wishful thinking will change this. 

Video 1

However, were I to be on the brink of commencement of ocrelizumab, then it is an entirely different thing altogether. Prof G  invited me to write a piece answering the question: ‘Should neurologists tell their patients about vaccine readiness before they start a specific DMT?’ 

In the vast majority of cases, patients are given the final say in the choice of DMT, so this becomes a rhetorical question. No one wants to think they had to make a choice with one eye closed. 

Moreover, patients expect this level of engagement as a baseline, not a privileged treat, and all the patients I consulted prior to writing this simply couldn’t comprehend that their HCPs (Health Care Professionals) would even countenance not raising this in one of two ways.

Firstly, if you are embedded with a therapy, as I am, then the expectation is that my team of HCPs are proactive in identifying and contacting the entire affected cohort with the news and how it may affect them. Specifically, without alarming people, the fact that the level of protection afforded by the vaccine is probably not the same as everyone ‘normal’ and advice on what to do in the meantime, as well as the steps being taken to change this gap in knowledge so that correct guidance may be given. 

Sure, the T-cells may generate some sort of an immune response, but as far as I and the clinical team that treats me in Oxford know  – and I’d be delighted if someone can share hard info on this – there is no data to show that T-cell immunity is equivalent, 50% as good, 10% as good etc. Perhaps it is 100% equivalency to the immune response that an ‘ordinary’ person receiving a jab will enjoy? Who knows at this point in time? The only thing that is certain at the moment is uncertainty.

The second scenario is if a patient is shortly to commence treatment with any drug considered to impact vaccine response. Pre-Covid, it seems that with ocrelizumab, issues were already being flagged in some circles. Before I even started treatment, I was asked to get the following jabs: Hib+Men C (combo), Men ACWY, DPT if it was more than 10 years since my last (it was), Meningitis B (2 jabs 4 weeks apart) and a pneumococcal jab (preferably Pneumovax which is 23 valet but subject to very variable availability in the UK or alternatively Prevenar 13. 13 valent as the name suggests and the one I did get). All of this was because the neuropharmacist(s), the microbiologist(s), and the neurologist(s) were concerned that ocrelizumab or any of the mab drugs used in MS may negatively impact the recipient’s ability to generate the appropriate immune responses to vaccination. According to Dr Gabe DeLuca, the lead MS neurologist in Oxford, this protocol is now going to be adopted nationwide. Remember: this was before some bat in the Far-East even started sneezing and running a temperature later in 2019.

For both scenarios, there is also the question of the almost certain need for booster jabs in the future. The dosing schedule of ocrelizumab and the time it takes for the B-cells to repopulate sufficiently after a dose means that a patient is more likely to be off their DMT in order to stay current with Covid boosters than they are on it and treating their MS. I would prefer not to have to choose between enjoying the protection of a vaccine and what that means regarding my ability to participate in society in a relatively normal way or treating my MS. 

I’d like to think that when HCPs learn about these emerging issues, their first instinct will be to wonder how this will impact their patients and immediately try to get in front of the problem. The next logical step would be to contact patients, explaining the issue and the implications for their lives, followed by suggestions/options to address this. Sadly, in certain parts of the UK, a few will sigh to themselves and see this as an added layer of hassle.

All this comes around to the question Prof G asked me to address. Yes. Indeed. Absolutely. Neurologists should tell their patients about vaccine readiness before they start a specific DMT. I and everyone I know with MS want to believe they are making a fully-informed choice. 

I have then uploaded a second video a day ago reflecting some of the reactions to my first one from a week ago. 

Video 2

As it stands today I must continue to behave as if I am unvaccinated and still as vulnerable as I was, whilst gradually most around me will, through the vaccination program, be able to resume a more normal lifestyle. A lifestyle that I also enjoyed alongside them until lockdown affected us all. Until I have an assurance that a vaccine will work for me – therapy change seems the most obvious option as a layman – then I shall have to remain locked down. And that is wrong.

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The blog (a must read if you have MS or are a professional involved in the treatment of MS) is here: https://multiple-sclerosis-research.org/2021/04/guest-post-from-an-ocrelizumaber/

Here you go, hold this.

/ Dominic / 3 Comments

Anyone who has grown up with male siblings, I have two brothers, knows that any phrase starting with, “Hold this…”, doesn’t usually end well. It is up there with the truism that most teenage boy’s trips to A+E are usually prefaced with a yell of, “Hey everyone, watch this.” 

Getting diagnosed with MS felt just like being passed an unidentified but definitely suspicious device by someone far more trustworthy than my brother. Based on that trust I took it, unquestioningly. Bad idea. Greeks bearing gifts and all that… You gave it a metaphorical shake, heard ticking, saw the faces of the others around you and realised that this was not a good thing. No one was sure what was going to happen, but you were certain from the looks that nothing good was going to come of it. It was more a question of If rather than When it was going to explode.

This is a Multiple Sclerosis diagnosis. There are no backsies. This unexploded brain bomb is yours for life and at no point can you hand back this uninvited contribution to your self. From that moment on you are no longer just You but You and MS, and what happens from that moment onwards is that as well as dealing with life you are now committed to trying to manage this unpredictable addition of an unexploded brain bomb. Oh, and by the way, just en passant, it is rare that other people can even see this new addition to You. Your new ‘forever’ ticking bomb.

I cannot emphasise enough that an MS diagnosis is made so much worse by thes unpredictability and it is the real mental grinder for me. I have had MS for 27 years now and not a day goes by without me wondering, several times a day, if this is the Last Good Day. You know it is ticking. You know it is going to go off. You know it won’t kill you. And You know it will just make your life immeasurably worse.

Good Day, by the way, is a relative term. With MS you start to judge yourself against what you know can happen when the bomb decides to go off in your brain. Over time the things that you considered to be a normal state of affairs are just concepts in the rearview mirror. For example, deterioration of certain eyesight and balance functions mean I can no longer safely cycle, ski, ride motorbikes, play squash, or shoot. It is small but it is enough to stop me. I try not to hate the MS and I try not to dwell on my many losses but I can never forget that they are the fault of my MS.

No one sees me not doing those things. They see me walking a lot and think to themselves that I must be fine. I know it is displacement to walk a lot and I am fortunate to be able to do that (with poles, obvs). I love walking but I only got into it when I lost the ability to do the things that were my passions.  The cheery optimist in me tries to focus on the benefits but the nihilistic realist in me can never forget what brought on this state of affairs.

Nihilistic I may be but I decline to get annoyed that people don’t take into account my hidden illness. The clue is in the word hidden. The vast majority of folks don’t want to hurt, offend, upset, or discriminate and the vast majority of healthy people are made a little bit uncomfortable, as at some level they are forced, even for a moment, to consider their own health and ability. To get and remain annoyed with perceived insensitivities entails working up some venomous thoughts and retaining them, and that injures me far more than anyone else.

Call me selfish but I am increasingly in life for the mental health of No.1. It is harsh, I don’t like it but I need to ensure that I don’t upset this increasingly, and usually hidden, delicate balance. For this damn bomb could go off at any time.

Tick Tock. Tick Tock

MS Forced My Marriage. To A Neurologist.

/ Dominic

Receiving your MS diagnosis has to rank up there as one of the suckiest things imaginable. For most of us it is about sheer uncertainty that follows the words, “You have Multiple Sclerosis”. You may have known it was coming but you didn’t really expect it. To win the Really Bad Luck Lottery.

One moment you are wondering what is wrong with you and the next you are thrust into a mental washing machine of terrifying thoughts and emotions. What does it mean? What will happen? When will it happen? How bad will it be? Can I take it? What if I can’t? What about my relationships? What about my ability to support myself? Will I need a wheelchair? And so on. For the rest of your life there are never-ending variations of worrying about the what-ifs. It is very dull.

I have broken several bones in my life and each time I have been given an accurate prognosis based on the type of break, the fix, and my engagement with the rehab. It isn’t perfect, but it has rarely been inaccurate. Either way, there seems to be a certain clarity that neither I nor any of the people I know with MS have ever been fortunate enough to receive. If you bust a bone the orthopaedic doctor replies in a way that answers the broken-bone equivalent of some of the questions in paragraph one. However loosely. A relationship with the Orthopaedic Surgeon is a time-limited experience. They fix it, dispense rehab advice, and move on. We have both had a forced relationship that we could both end.

However, the standout feature of having a chronic condition that won’t kill you is the nature of your relationship with healthcare professionals and the healthcare system. It is entirely different. From the day of diagnosis you are forced into a long-term relationship – whether you like it or not – where your new partner is usually dictated by the geography of your local hospital.

Digest that for a moment; your new long-term partner is a function of where you live. Where. You. Live.

An MS diagnosis makes us the victim of a forced marriage – not arranged – where we never even got to meet the other half first.

One of the issues with MS is that you don’t die from it, you die with it and that fact seems somehow to make it less serious in the eyes of many. That is wrong, as anyone with MS will tell you. It is sad to say, but there have been odd occasions where death has seemed momentarily preferable to the MS. That is how much it sucks to have MS.

This unconscious downgrading of the seriousness seems to underpin a perennial confusion held by many of those treating our MS or having to deal with our MS. It is between understanding how MS feels and how it actually feels to have MS. 

Talking of feelings, nothing is more frustrating than not knowing if something is within your control. I have never ever met a patient that hasn’t wanted to intervene in some way in an attempt to control their newfound forever friend. We cast around, instantly becoming less risk-averse, read everything we can find, hear all the input from people ‘just trying to help’, and become far more suggestible to woo. After all, who doesn’t want a magic cure? I certainly do.

More than once in my 27y of MS, I have woken up feeling like I have never slept, or there is a new unexplained buzzing in my ears or pain somewhere. Is it MS? Everything now runs through the ‘is it MS’ filter. It is natural to seek an explanation for these new weird episodes in your life and who seems the most likely person to do this?

Why, it’s your new partner, the neurologist. That’s who. That incredibly learned person that you were forcibly married to at the point of diagnosis. And because we are now in a long-term relationship I want them to understand a bit about me; my hopes, dreams, aspirations, fears and so forth,. I expect them to shed a bit of light on what is going on, and I want the them to ask me how far I am willing to go, and offer me treatment based on my risk tolerance, not on their risk tolerance. It is me who has to live with it day to day, not them.

So, as my new partner, I expect quite a bit. Additionally, of this magic needs to happen in twenty-minute segments once a year. Perhaps unrealistically, but there you go, most long-term relationships have unrealistic expectations in them. Mine are clouded with genuine fear and worry because that is what MS does to you. I am not always the rational one any more.

In a rational world, I would like to think that my neurologist understands my frustrations, my fears, my uncertainty, my attitude to risk etc that I am feeling, but it doesn’t feel that way. Whilst medical school these days emphasises the patient more than it ever did, it still doesn’t cover forced long-term relationships. I get that it is a tricky balance as I realise us patients can be tricky buggers, over-egging things, being hypochondriacs, dangerous know-it-all’s educated by Dr Google and so on. It would be great to think that nestled in the vast amount of schooling that they have received the topic of long-term relationships with patients who don’t die quickly but get sicker and deteriorate over time is included. So far, I am not aware of any relevant training prior to being forced into a relationship with us. Awks for them as well, but then they don’t have MS. The fact remains that in choosing Neurology they have entered a field where they too are forcibly wed to patients by the vagaries of geography.

In a quest for answers and a bit of certainty, MS patients will also look to their doctors for emotional as much as purely medical help. All doctors will have heard variations on the question, ‘What would you do in my shoes, doc?’. Usually, they swerve them neatly as I am pretty sure this is a scenario covered off in ‘Being A Doctor 101′. To pass that beginners module they soon learn to cleverly redirect it, refuse to answer it etc but they rarely say, ‘I don’t really know the answer, but let me go and find out and I’ll get back to you’. That is because many still exist in a hierarchical world where that is simply an unacceptable ceding of control and a display of weakness.

We are not trying to wrestle the intellectual high ground from them, say ‘ha’, or gloat over something we know and they don’t. We are scared and worried about the future and have been thrust into an unplanned long-term relationship with them, and we look to them as the font of all knowledge. However unfair that may seem.

We would very much like to be treated more as an equal and not an annual inconvenience where our partner half fixes a smile, says how lovely it is to see us again, asks after the interest of ours they may remember about, makes understanding cooing noises, pokes and prods us for a bit and then come off as the font of all knowledge with everything to do with us and our condition.

“See you in twelve months; send in the next patient.”

We want more from this relationship. It can’t be transactional, we all need to be all-in, all the time.

Flipcharts and Marriage Guidance

/ Dominic

For a chap who likes to believe he is fairly good at things he puts some effort into, it seems I am pretty crap at relationships. My current wife excepted, obvs – love you so much honey. Mwah mwah. I do care. Really, I do. Despite my efforts to cultivate a gruff exterior I am really quite a thoughtful fellow. Honestly. At times. When I remember.

I guess that is what you get when raised by a strong woman with no regular father figure present. My mother, for the record, was the Governor of a Maximum-Security Men’s prison. I remember her telling me a story of taking over a prison, getting the guided tour by the Guards, and when the inmates saw that it was a woman, they all started swearing and cursing  to rattle her. She walked to the end of the Wing, turned back and addressed them all with a little smile and the observation, “Gentlemen, you’ll have to do far worse than that to upset me. I have raised three boys and they can all swear better than you.”

But back to relationships for a moment. I really don’t get why people pay so much for therapy. Having ‘A Therapist’ strikes many of us Brits as a certain type of American peculiarity. If you face into thoughts/feelings/emotions etc and be honest with yourself (I grant you that it is not easy nor pleasant, but it is certainly cheaper and not as cringeworthy as telling it to another only for them to reflect it back to you asking you what you think it means and then charge handsomely for it) then you can come to a reasonable conclusion about the serious things.

My ex-wife, when we realised things were tough, convinced me to come with her to a marriage guidance counsellor in Oxford and I agreed. Hell, we were getting nowhere, knew things weren’t that good and were at a loss for suggestions. I bit back my inner cheap-gene feelings about paying someone to tell me what I knew, albeit suppressed nice and deep like any good English person does with emotions, and went along with an open mind. The Marriage Counsellor was very pleasant, welcomed us in and started by explaining that she’d like to get to know us better. So far, all very reasonable sounding. We smiled and nodded obligingly. She started by producing a flipchart and explaining that she wanted to chart our families in order to understand us better. One for each of us. “Let’s start with you, Dominic.”

I can say definitively that that is the exact point where things started to go downhill. You see, at that time in my career I was facilitating a lot of workshops, several days a week for three years. It was mostly my job and I knew just how much information fit on a flipchart sheet and just how small you can write with a flipchart marker. In short: I this was an area where I felt qualified to make this type of simple judgement.

At this point I interjected and, smiling back, observed that she’d need more than one piece of paper for mine. My ex-wife also smiled, nodded, and agreed. For she too, being in a corporate job, was no stranger to the limits of a flipchart. The Counsellor smiled back – there was an inordinate amount of smiling by this stage – far too much in my book. Neither I nor my ex did the overly smiley stuff. Nonetheless, artificial facial muscle distortions aside we both knew that one sheet of paper was simply not up to the task for my weird and wonderful family tree, no matter how small she could write with those chunky markers.

The Counsellor– still bloody grinning like a demented Cheshire Cat, are they trained/ordered to smile. All. The. Time? – demurred and explained that she was more than capable of doing this. I smiled back and reiterated again that this was not only unlikely but impossible. She scoffed, doubled down, poised her pen, and dragged the flipchart closer.

It was at this point that we lost faith in her entirely. I was suddenly overwhelmed by that feeling you’d have if someone started in on your hard earned cash and was setting fire to the notes one by one. The only small relief was that we had not pre-purchased a block of sessions with this demented grinning woman. Thank God for small mercies.

Whatever we may have thought of one another – the clue to the outcome is in my application of the prefix “ex” – at that moment we were quite united. Whatever we may have disagreed over we both knew that my family tree was one giant shitfight and would defy a single flipchart page. Still, we both silently thought, it was going to be great fun seeing her try. In the end it went to three full pages and neither of us was so graceless as to indulge in a ‘told you so’. We didn’t have to. She knew.

Looking at the bright side, it turned out that we had spent £50 on an hour of pretty good schadenfreude. I just patiently answered her questions, and, at my insistence, we only went from my parents to the present day. If she had bothered to ask before marching so far out on her limb of flipchart defiance and setting out her stall of certainty, I could have explained that my mother had been married three times, my father four, I have one full brother, two half-brothers, one of whom I have never even met, a stepfather, two stepmothers, a step-brother, and a step-sister.

The Gift That Keeps On Giving

/ Dominic / 4 Comments

Can you remember growing up when the school fete always had a drum with the numbers folded up and for the final event of the day some older worthy cranked the handle a few turns, dipped their hand in, and produced a little scrap of paper with a flourish? With great care, they’d unfold it, squint at the number and then read it out. The hushed crowd would consult their row of ticket stubs bought to support the school under the pretence that they wanted the value basket of meat or the half-case of Blue Nun? When I was a kid that was the highlight of the day. The anticipation, the crushing defeat, the look of triumph on old Mrs Miggins’ face as she trousered the plonk? All of that. It was the competition of the year. You wanted to win it but you never did.

How about this for a lottery win? You’ll have to change gear – I’ll wait, the gears are a bit worn and unlubricated at this point and are altogether slower if you have MS – and remember the time you actually won another lottery. One that you had never heard of, one that you don’t recall entering, and one that you definitely didn’t want to win. When you did find that your number had been chosen you couldn’t just decline it or quietly re-gift it after a respectable amount of time had passed?

That is what it is like to get an MS diagnosis. The confirmation of diagnosis conversation is about being randomly gifted something you didn’t want, can never give back, gets worse over time and you have for life. In the lottery of life, you lost out big-style.

You can break many bones (as I have) and perhaps you are never as good as you once were, but they can be put behind you with time and physio. A well-known London Neuro has had some very unfortunate first-hand experience of just this recently. Thankfully, they are recovering quite well.  However, MS is not one of those things you can recover from. MS is incurable. It is manageable for most people, but it is incurable for everybody. You don’t make a recovery no matter how hard you try.

In the last 15 or so years, a plethora of medications to treat the disease have come on the market. None of them are cures, they are all just chemical brakes. Some are the old asbestos-lined drum brakes, and some are the latest carbon-ceramic ones. They are all just brakes though. They can slow down the process, but they can never stop it. The overall aim of these disease modifying treatments boils down to two components. These are:

  • to delay the onset of disability and
  • to reduce the severity of it when it occurs.

That is it.

No cure.

None.

Just brakes.

MS patients are terrified by the thought of losing their physical and mental abilities in the insidious creep of the disease. For many of us there is a tipping point where we go from oscillating between good and bad, into a gradual decline where the only update you hear is about getting worse.

Having MS is about becoming progressively disabled as you age. The accrual of some of these disabilities is visible to others though many are not. Walking with sticks, needing a wheelchair or a colostomy bag are things others see. The crippling fatigue – that you can only describe as tiredness, which doesn’t do it justice – is one and the so-called cog-fog is another but no one sees it. You feel lazy and a slacker and want to do better but you just cannot get out from under this damn feeling of being Sisyphus.

The idea of not being able to string two thoughts together is also incredibly annoying. It is a million times more annoying than the feeling you get when you arrive in a room and stand there blankly knowing you came in for something but know that you have totally forgotten what that thing is. It is that. With bells on. It is the frustration of knowing you are mentally underperforming, knowing you can do better, knowing you used to be better but no longer being able to connect it all up as easily, if at all. And the most frustrating thing of all that? Knowing it is the MS deterioration and will never improve.

You can treat some of the effects of MS with other medications, be they drugs that help tight muscles unwind a bit so you can walk a little less balled up and with less pain, to drugs that help clear the cog-fog a bit. They are all sticking plasters and nothing is the same as it once was.  I feel pathetically grateful for these little bits of relief.

There are not that many chronic diseases that are as long-lasting as MS and as disabling as MS. These days you rarely die of MS, you die with MS. This rather sorry fact means that it is hard for people to take it as seriously as a person you know  (has happened to me a few times) who is killed by cancer in 6-24 months. Their struggle becomes heroic in the eyes of people they have never met. Yes, they fought it hard and nobly. Every single day. And it won, every single time. And then, over time, most people forget them. This is the bugger with MS. It just doesn’t go away and it doesn’t just kill you either. It is there. Gradually disabling you. And you know it and people forget you.

And yet the same refrain keeps playing; MS is incurable.

MS means you will deteriorate. Slowly at times and faster at others but all the deterioration shares a common theme. It will not get better and it cannot be reversed.

I write this, not as a pity party piece, but because I am increasingly frustrated with the care I am receiving. Or not receiving.

With previous doctors, I never questioned the idea that they got it – my MS and MS in general – to a greater or lesser extent. By getting it, I mean at a human level. Not just the aetiology of the disease, the examination of stained slides under  microscopes, the conferences, the papers, the books, but the way this ghastly disease is ever-present in my life and my mind. Every day. Wondering what the next episode will be. As a patient you just want your neurologist to have a degree of empathy with how it feels to have MS.

Not how MS feels, but how it feels to have MS.  They are two different things entirely.

For the first time in 26y of MS I suddenly feel that I no longer have a neurologist who shares my treatment goals, gets me, gets my attitude to life and my attitude to MS. Instead they are a complete ‘book smart but not people smart’ sort of person. I think they find it very hard to actually engage with patients and aren’t a great communicator. It certainly isn’t intentional, just quite tone deaf to feelings.

On this journey you need friends and allies and most of them come from the medics that treat you. You need to turn to them and you want to rely on them and when you suddenly feel as if your only advocate is you, the main researcher is you, there is just one person fighting your corner (hint: still you) it is quite upsetting. Discombobulating is a word I like the sound of but rarely have any real reason to use. Here it is perfectly onomatopoeic and describes the feeling exactly. It is discombobulating. A team effort has suddenly turned into a whack-a-mole process where you are constantly anxious that you have overlooked something, failed to ask a question, failed to take a stand or overlooked something you didn’t know you didn’t know but it turns out it would have been helpful if you did know the thing you didn’t know you didn’t know. And your brain ain’t what it used to be and you know that your mental decline alone is probably allowing things to pass by unremarked on. Things you hope that the neurologist will remember.

On top of this I chuck in ageing – I am 51 now – into the pot and know that there are several things that don’t happen after 55 because you cross some invisible Rubicon which disqualifies you from doing things, like taking part in a clinical trial, for instance. Just the idea that one day in 2024 a switch is flicked and my eligibility is no more is quite worrying.

I want stem-cells. AHSCT, which is the nearest thing to a reboot of the body’s immune system, is not a guarantee that I will skip merrily into a halcyon future. I get that. It is, however, the last shot for me. The fact that my neurologist is a hand-wringer par extraordinaire means that they don’t really believe in that. Perhaps they might be a bit more sympathetic if I were very disabled – a doctor way of saying that they know it is risky and if you die it was your last shot so worth it – but they don’t see it as something for people who are not yet as disabled, like me.

I think that idea is nuts. They have no idea what it is like. If I, an informed patient is willing to take the risks then I struggle to see why I can’t do this. From a pure economic viewpoint I am on an awfully expensive 6 monthly infusion and if nothing changes I am likely to make it another 20 years. That is a lot of money. I will decline in that time and I will need greater input from the health care system, extra services like physio, an FES machine for my right leg, orthotics, the drugs I already take to make the infusions not ruin my skin, the ones to help me grasp at a semblance of mental normality for a few hours a day, and so on.

AHSCT is about £90k privately. However, if it is just costs being covered in the calculation then I imagine it is a fair bit less on the NHS. It either works long term and everyone is a winner or it wears off in a few years, so it is break-even: or at worst I am killed by the cure and – financially speaking – the NHS is the winner. There are variations in between but you get the gist. My beef is that my attitude to risk feels overlooked despite how informed I may be.

This is not all Negative Nancy stuff. Life goes on. I do stuff, I volunteer for MS charities, I pursued PhDs for a while but have failed so am going to take some professional qualifications to try and find work that I can fit into the restrictions on my life because of my MS. I wake up every day and am thankful that when I open my eyes I see daylight and that I am able to do many things some of my MS friends cannot do. I admire how they get through it every day, wonder if I could show the same fortitude, wonder when it will be my turn, and try to keep such thoughts from my head as they are not conducive to being productive.

Overall, though, I am really dogged by the neuro thing. I think I’ll have to change. That means losing a relationship with one of the most amazing MS nurses I have met and schlepping to a hospital that isn’t on my doorstep. The thing with the NHS is that it is theoretically possible to do this but if everything goes like clockwork it will take a good year. And in my head the countdown to 55 is becoming ever louder.

Face Masks. What is the beef?

/ Dominic

I have had the misfortune to find that some people I respected, I don’t respect as much anymore. The reason why is rooted in their knee-jerk refusal to wear a face mask, often for the thinnest and most transparent of reasons. And, I do realise that this is hardly a new topic and that I am a lagging and unimportant commentator. As someone with Multiple Sclerosis who looks utterly normal I am v concerned.

These reasons seem to mask, excuse the pun, a petulant and often childlike refusal that, ‘no one is going to tell me what to do’.

The simple fact is is that if everyone were to wear a mask in confined spaces – shops are a good example – then the disease transmission rate is cut dramatically. Approx 70% and that is taking into consideration that us ordinary members of the public don’t get it right all of the time.

Not getting it right is touching the mask, failing to wash it regularly and the like. Nonetheless, 70%. I’ll take that.

Wearing a mask is no more an infringement on your rights than not playing your music too loud in anti-social times circumstances, throwing litter from your car, being required to drive on a particular side of the road or covering your gentitals in public.

I can remember the societal squawking at some other large step-changes. Seatbelts, speed limits, the metric system in Canada: hell, the abolition of slavery (long before my time) if you want to be inflammatory. All of these events were met with many pseudo-reasoned arguments all purporting to be based in logic and common-sense. All bullshit.

So, all you naysayers, please get a grip. It isn’t that big a deal. You are doing it for other people and perhaps that is the issue? Other people, the weak and the vulnerable in society, are depending on you growing up and thinking of others for a moment. While you are at it, clean your hands regularly.

Can you do that without too much fuss? Please.

PS: There is no need to wear a baseball cap in such a silly manner!

People are strange

/ Dominic

I realise that by logical extension I am odd too, but I’m not. I am normal. Ordinary even. I have no doubt that some people think I am odd and that is their prerogative, but they are wrong. This is not a new thing, I have known this for a long time. The reason I am writing about it now is that I received a stark, if not humorous, reminder today in of all places – wait for it, you’ll gasp – Twitter.

Before you chime in with the, “but any fule knos that Twitter is full of oddballs”” and variations thereof, I agree. In its defence, Twitter also has as many non-oddballs, is a great source of news, support, community, academia and so on. However, like many open platforms the oddo’s seem to be that much more excitable than usual. Being easily excited, getting worked into a froth, having no perspective, and generally raging against the machine consumes far more energy and requires a disproportionate amount of space and attention. Like a bigger flame requires more oxygen, the shoutiest, meanest, and the most thoughtless people on Twitter consume more than an equal share of the bandwidth. This in turn means that the reasonable voices are less well heard as they are being suffocated by the lunatics. The loons drown out the sensible people. T’was ever thus.

On this particular occasion I was reading a thread about the fact that one of our glorious government cabinet members had apparently announced something, in an apparently laughably inappropriate setting, about the latest wonder drug for Covid-19 sufferers, dexamethasone. Notwithstanding the fact that the photo may not have been of this, for there was no way of telling, it hadn’t prevented people from piling in. One of them had even gone to that paragon of reliable information and screenshotted the Wikipedia list of side effects. Before I knew what had happened I had arched an eyebrow and dashed of a response similar to, “Wiki is the source you choose to cite?”. A relatively polite to and fro ensued where it became increasingly evident that they had no idea what they were talking about and then, apropos of nothing I had said, advanced the idea that they would like to see ‘natural’ remedies or even homeopathy being endorsed by the government as viable Covid treatments. I bit my knuckle and refrained from replying. They were sounding just slightly ill-informed and as it turns out they were a Grade-A oddball masquerading as a normal person. Homeopathy has been scientifically discredited beyond a shadow of a doubt. Serious advocates of it as a treatment option are obviously very odd.

All is good. I have declined to engage and neither do they.  Scroll forward 24h though and a message pops up from a randommer who had read my little to and fro with the believer in homeopathy and just gets stuck right in with the abuse. Knowing nothing about me they have gone all in, “I have read your blog, it is terrible, you think you are good with words, don’t give up the day job, how dare you sneer at Wikipedia etc.” I stopped, thought for a moment, and then burst out laughing.

I have no idea of their relationship with the original interlocutor, I know nothing about them and frankly, can’t be arsed to dig into some random frother on Twitter to try and get a, “my dad is bigger that your dad” retort filed. But, they obviously felt it necessary to do so, read some of my blog and then do their best at a vile response. Quite what they had hoped to achieve escapes me. It did, however, give me this idea for a short post and for that I am grateful.

Twitter is like the flame for the oddest of moths and sometimes it is good to be reminded of the dual role of news, banter, pithy remarks for some set against that of the seemingly bottomless cesspool of unpleasantness it is for some others.

Moscow. Baby.

/ Dominic / 3 Comments

[Updated 1.6.20 for clarity]

People say. People say this and people say that and rarely do I pay them any heed. But, more than one person has said to me I ought to share this story. I do concede that on occasion I am guilty of enhancing a story. Not to make me look better but because it is a yarn designed to amuse and inform. What I am about to tell you is as close to the truth as I can remember.

At the turn of the century, things eventually started to go my way when I had a ‘Through The Looking Glass Moment’ in my career. I was in my v. early thirties and relatively recently married. I was doing a job I didn’t enjoy but one that provided the income I required, mostly because I had been idle at school and had relatively fewer options. Having suitably hampered myself by not lifting a finger at school and not going to University because I already knew it all, I couldn’t walk into a plumb ‘degree only’ job and so started with a bump at the very poorly paid bottom of the heap. Sales was where one made any money in this case. I was moderately good at it but really didn’t enjoy it. This next job was the exception that proved the rule. The ‘Looking Glass Moment’ I mentioned earlier was when I somehow blagged a job with a small sales consulting firm in the early 2000’s.

God knows how it happened but perhaps it was a case of ‘Fortune favours the brave’ or, more likely, the IT world was quietly going mental in the dot-com boom? Or, perhaps, they weren’t paying too much attention and I snuck in under the radar? I won’t bore you with how I got there but get there I did and I found myself on the receiving end of a conversation that involved the words, ‘We’d like to offer you a job’ and, ‘I’m afraid the starting salary is only $167,000.00?’ One-hundred-and-sixty-seven-thousand-dollars. For listening to the sound of my own voice? Yes please. You may ask why it was US Dollars? They were far too busy ploughing forward taking over the world with ‘e-everything’ to bother with local currencies, so it was US dollars, take it or leave it. I most firmly took it and managed to struggle out the words, ‘Well, I suppose that is fine as a starting salary’ whilst doing my best at holding what I imagine was an extremely poor poker face. It was the time of complete corporate madness.

Money wasn’t real, everything was going online and everything was overvalued. Not by a little but by a lot. Talk about The Emperor’s New Clothes. It was simply surreal. We travelled everywhere in Business Class, often being upgraded to First as it was always full fare and always fully flexible. The client was paying, and so you bought the ticket that gave the best Airmiles. I earned Airmiles like they were going out of style. Lots and lots of Airmiles and with the Airmiles came the highest frequent flyer status. Having a BA Gold Card was very helpful for the frequent traveller, as we are about to find out.

Like all booms, the dotcom boom did just that. It went boom in a spectacular way. How’s this for speed? speed?  My four-hundred-thousand quid of share options lost all of their value in three days, and by the fourth I would have had to buy them back. For some time, the more sensible financial press was looking askance at the wisdom of twenty-somethings tearing back and forth to the US. I mean, they are clever, enthusiastic, hardworking and more susceptible to being fawned over and told they are simply the cleverest but they seemed barely out of nappies, had no solid business experience and yet had become the Masters of the Universe for many. One of the main players was an online fashion retailer called Boo.com and when everything imploded, the Financial Times had the best headline. It simply read, “Boo Hoo”.

My wings were clipped back in a brief meeting with the European Operations Director (also a John if memory serves but definitely not a cool one) in which he told me there was good news and bad news. The bad news is that I was sacked: and before I could get a word of query out, he told me that the good news was that I had been rehired as an Independent Consultant on $1500 US a day plus all expenses. At the then exchange rate this was just shy of £1000 a day. I signed the paper with nary a thought. Amongst the collapse my lot seemed to be getting better and better. What I had failed to spot was that this was them trying to unload overhead and make me into someone who could provide a service to the end of their existing contracts and then be cut loose. Things rapidly moved from 10 days’ work a month to scraping around and begging the scheduler for the dregs. A few days here and there. Not the worst money but quite limiting as you were always poised, ready, like a coiled spring, as it turned out for nothing to happen.

One of my final gigs was for Fujitsu Siemens in Russia and it was for 3 days of course delivery. Something I was good at, enjoyed even.  My then wife then was pregnant and very close to dropping our sprog, closer in fact than either of us imagined and money in the bank was a Good Thing. By then, even the myopic and naïve young me could see the writing on the wall and the futility of scrabbling around for the scraps with much more experienced consultants who had been doing this far longer than I had. The previous time I had gone to Moscow (for another client), I was less than amused as, when leaving, I was arrested at the airport. It scared the living shit out of me and I felt terribly foolish as I had not realised it was merely the usual thing of trying to extort a bribe from a suitable looking Westerner. I didn’t end up paying anything because it did not take them long to realise that they had picked the wrong target. I was just terrified and didn’t know what was going on so must have seemed like a total dipshit who wasn’t just playing hard to get but was genuinely stupid. All I could picture was me in an unacknowledged cell deep under the Kremlin having my fingernails pulled out. I blame this level of internal panic and overactive imagination on watching far too many James Bond movies growing up. After a credible Herr Flick lookalike (sans evil monocle) got so exasperated with my dumb responses I was just thrown out of the room that the other copper had detained me in before summoning the scary goon. I just stuffed the contents of my freshly rifled suitcase back in willy-nilly and tore over to the BA Check-In desk. I could not leave fast enough and swore I’d never return to this corrupt hole.

Still, I needed the money and at $4500 for 3 days’ work I’d put it down to experience and have my bribe money ready for my next pass through the airport. As it happens, I didn’t need it as my departure this time would be even more extraordinary than the last. I had been facilitating a workshop all morning and for some reason my phone had been buzzing away in my trouser pocket. On the fourth or fifth buzz I got to wondering who it may be and suggested that a coffee and cigarette break was in order. I sauntered outside and fished my phone from my pocket and saw at least 7 missed calls from my wife! As she knew the style of my work and is a pretty together person who rarely needed to call, this could only mean one thing. Something was wrong vis-à-vis the pregnancy.

[Before my departure she had urged me on when I was vacillating, based on the fact that the local GP with his little wheel thing had predicted a very early September birth, and the fact that this gig got me home on the 29th of August meant everything would be dandy, and we would be $4500 better off. I was always suspicious of his competence for all things doctoring – think more general bumbling idiot – which should have raised my suspicions. My doubts were further compounded by the fact that the Michaelides clinic in London had based their earlier estimates on some very high-tech and expensive scan where the spine length is measured. This then allowed the dark computational wizardry to give a due-date prediction that reckoned that things would come to a head in late August, and not early September as the idiot GP was maintaining. Common-sense, as is so often the way, was clouded by the promise of the filthy lucre.]

Our conversation was brief, and an abbreviated version follows: ‘Hi, what’s up?’, ‘Nothing to worry about, sorry for calling.’, ‘But you called seven times. That isn’t like you. Are you sure everything is ok?’, ‘Well, my waters broke an hour ago. But it is ok, nothing to worry about as Lydia is taking me to the hospital.’

Fuck. Fuck, fuck, fuck, fuck and doublefuck. My wife is in labour and I allowed myself to be seduced into going to Moscow for $4500 dollars. Fuck.  What a tit. I am going to miss the birth of my child.

All I could manage to say was that I’d do my best to get home as soon as I could. Simultaneously, I was overwhelmed with such a strong emotion that I was in the wrong place at the wrong time and that knocked me for six. I did what any seasoned hobby-smoker would do and cadged a very strong ciggy from the Russian fellow next to me. I demolished it whilst running endless scenarios through my head. None of them involved making it back on time and all of them involved a very pissed off client with no fee for the workshop and business class flights to Russia and a nice hotel falling at my feet. Including the loss of the fee, I reckoned that to get home in the next 24 hours was going to cost me the thick end of ten thousand quid. Still, there are times in life when you just have to suck it up and do the right thing, regardless of cost. It is family and that is that.

I drew breath and walked back into the room to find the client principle there, the CEO of Fujitsu Siemens in Russia. Oh goody. I like to think I explained it all rationally, but I suspect that I just babbled. A lot. As a contrast, he was straight-faced and ice-cool. I was crapping myself further at this point. He paused, looked me up and down, drew breath and asked, ‘Is it your first?’ I nodded stupidly and he beamed at me and ordered me to take his car and driver and get to the airport as soon as possible. I was so grateful he didn’t murder me that I just burst out that I wouldn’t charge him for all the wasted time, flights and hotels etc. He laughed and told me to charge him for the full three days and that he’d sign off all the other expense and why was I still standing there? His car would be waiting outside when I got downstairs. True to his word it was. A bloody great BMW 7 Series limo with properly blacked out windows. A regular mafia mobile, but pretty typical for the Moscow elite in those days.

I remember very few things from the trip to the airport. One is that there is a central lane on the massive freeway to the airport that is reserved for VIPs. It turns out that a great big German limo with black windows is automatic qualification. The driver, a very large gentleman who I’ll call Yevgeny, just pulled into this lane and buried the accelerator and I sunk back into the seat. Blimey, those 12-cylinder engines from Munich really have some welly.  I don’t know how fast we were going but I do know it was considerably quicker than most of the other cars I saw. The other thing I recall is trying to get across in basic English that I was arrested for a bribe last time. Yevgeny seemed to be failing to grasp this, and seemed very dismissive of what was to me an extremely important point. Finally, I rang the BA Gold Card line and asked for a place on the next flight. The lady was a little bit hesitant but when I blurted out that my wife was in labour, she changed immediately. ‘Sir, get yourself there. I’ll get you on the next aircraft. Leave it to me.’ That was an amazing bit of service that I will never forget and to this day I get a twinge of guilt if flying any other airline than BA.

It turns out that Yevgeny was listening to me after all and he just pulled up in front of the main terminal. In the UK that would have elicited many armed police and much eating of gravel, hands behind the head and speedcuffs. Moscow in those days had a proper Wild West feel and stopping in front of the terminal in a threatening looking car didn’t raise an eyebrow. Yevgeny uncoiled himself from the driver’s seat and gosh, he was a proper big and scary looking fellow. I think he said, ‘follow-me if you want to live’ but I can’t be certain. Anyhow, Yevgeny just starts barking orders at anyone in a uniform and they stiffen up and let us pass by unimpeded. It was extraordinary. He had either told them I was some sort of vvVIP or else I was radioactive. Either way, they averted their gaze and we just sailed past, me and the giant. He parked me in front of the BA desk without further ado, said something congratulatory in Russian and patted me on the back. Except, in patting me he nearly knocked me over. Strong lad too. They were expecting me so there was a brief glance at the passport, no tickets or any other boring paperwork was issued. A man appeared in a suit and I was ushered to the lounge.

The next flight to London was departing soon and I hadn’t had time to get a drink when the same fellow escorted me to the gate. I got on, turned left (other people’s money, always fly Business, until told not to), sank into a big seat and for the first time in several hours I allowed myself to relax as I was faced with three and a half hours of confinement in which I could do nothing at all. A steward appeared, asked if I was the man having the baby.  I started to correct him but when I tried the only sound I made was a big sigh. I gathered myself a bit and ordered a scotch and just sagged as the enormity of it all started to hit home. When requesting my third rapid-fire scotch, he politely observed in a Jeeves sort of way that I may want to go easy if I have to drive to the hospital. I explained that I had a driver, and could I please just have the scotch? He demurred and I had a third and then a fourth one. A little voice in my head  said four was ample for midday drinking, regardless of the excuse, and I didn’t want to be a dribbling mess before I even arrived. The free booze relaxed not just my body but my sense of time and in no time at all we were landing in London. My mind shifted back into gear and I started checking my watch. My wife’s water had broken at 7:30 in the morning UK time and I was now landing back in the UK at about 6:00pm. 9.5 hours gone and there was a sliver of hope.

I leapt out of my seat to see that the cabin-crew was stopping anyone else from getting off before me. I had something thrust into my hand and when I looked at it they had collected all the remaining bottles of the small screw-top Piper Heidsieck champagne they serve in Club World and stuffed them into a double-bagged plastic bag for me. I legged it up the jetway clanking with free champagne to the shouts of good luck floating up behind me. As I clanked my way through Heathrow, all the time wondering if the handles would hold I resolved to just keep going if they broke. I seemed to be on a roll as, despite my initial fears, the handles seemed to be holding. I must have been waved through immigration but in truth I just can’t remember. I do remember piling out into the Arrivals hall to see the welcoming face of my driver, Derek.

Derek also had a massive German car. For him it was the Stuttgart mob in the form of a big silver S-Class Merc. Derek had been driving me to and from the airport, a weekly occurrence, for the last 18 months so we had an understanding that I would sit back and just leave him to listen to terrible music and drive. I plonked into the back seat and realised that what the Merc lacked was the Gangster Black tinted windows of the Beemer. Because in England, unlike Russia, that is quite de trop. Some tint yes, fully blacked, no.

Derek was very reassuring and just said to me, ‘I’ve never missed any of mine son, and I’m damned if you’ll miss yours.’ All I really remember of that drive is that he hurtled up behind car after car, looming there with his bloody great German tank about 6 cm away from their rear bumper, flashing his lights, hooting the horn and gesticulating. I felt like a Red Sea pedestrian with Moses at the wheel on the M40 that day. That car must have had a big motor too as we were properly shifting and all I could blurt out was that I didn’t want to meet my new child from the A+E department. He just laughed and kept the beast going flat chat to the hospital. Frankly, the time was nearing when I knew I’d arrive. I recognised familiar landmarks as they shot by near to the speed of sound and everything else was starting to become a bit of a blur.  I do know that we made it from Terminal 4 at Heathrow to the door of the maternity unit at the John Radcliffe hospital in Oxford in 42 minutes. Normally a 60-minute drive at the best of times when making progress.

I pelted into the maternity unit towing my carry-on behind me, dressed in a good shirt, chinos and a jacket, and clanked up to the reception desk. The ladies manning the desk, who must see all sorts of freaking out fathers pitch up, looked up calmly as I blurted out who I was there to see. They paused, took this odd sight in and then one of them, having noticed my baggage, rather archly observed that I couldn’t stay the night. I explained that I had come straight from Moscow and they seemed mildly impressed. Score one for me. I’ll bet they don’t get that every day. I was shown to the room, it was 7:30pm and my wife seemed faintly surprised to see me. I had a quick scan around and realised that our family still consisted of only two, heaved a massive sigh of relief and barely refrained from announcing, ‘Ta da’ and doing a twirl. It didn’t seem appropriate given she looked understandably as if the burden of the real work – things like breaking waters, contractions, being sick, having pethidine, being sick some more etc  – was being done by her ,with undoubtedly the best still to come. The fact I had made it in time seemed slightly and understandably obscured by the fact that, for a brief moment in time, I seemed to have got rock star treatment. Almost free money, chauffeured limos, on-demand jets, lots of whiskey and a ton of free champagne. Still, I thought I had done well but it was probably best to leave it eighteen years or so before really gloating.

 I looked at the midwives, told them to make best efforts and thrust the bag of champagne into their hands. My gorgeous daughter arrived at 4:30 am the following morning and as that adventure ended another one began.

It Is My Cargo

/ Dominic / 1 Comment

I wanted to hate it and I am told that I should hate it. Hate it like one hates a sworn enemy, that I must fight it and that a true fighter calls themselves a warrior. However, I do not hate it and I am certainly not a warrior. Truth be told, I always feel much closer to a devout coward than any sort of warrior.

Hating it and fighting it consume so much of the energy that I ought to conserve to manage my life, and who wants to live life on a permanent war footing anyway? That must be tiring and living is tiring enough; I am idle and lazy, and am not getting any younger so where is the fun in that?

If it is a war, it is an unwinnable one. Given that we often work so hard to deny the inevitable endpoint by avoiding the topic of the hard stop faced by all of us, we end up skirting the unwinnable part of any war on It.  But the journey always ends, for everyone. That is the only certainty. That and taxes. However bumpy the journey and whatever the cargo we carryif it is treated as a series of skirmishes and not a grand battle (the kind that needs a warrior) then it becomes far more manageable and far less tiring.

Reverting to the topic of youth for a moment longer, there are benefits in getting older and it is worth noting that when skirmishing with it, youth and enthusiasm are rarely as effective as age and guile. It is the application of cunning and intelligence, combined with a good dose of backstabbing and trickery, both tactics of age, that are more effective and can be a great deal more satisfying at times.

To manage it effectively one must first understand the classic ‘How do you eat an elephant?’ conundrum. You cannot do this in one sitting. Instead, you must cut it into bite-size pieces. And (to stretch the metaphor we’ll make it an everlasting elephant), in order to keep things interesting, you must learn to make a variety of dishes. Some are grand efforts and others are best served to the dog. That is the way of things and the way of life. Whatever additional or different wrinkles get added to your life, the tactics remain the same. Deal with it piece by piece. Long-term plans are for fools. Ask anyone who has tried.

The additional cargo can also be viewed as interesting, because it is. It grants us a journey that stands out from the other boring and regular ones that most of our fellow travellers have. It requires a special understanding, a greater level of engagement. And, if you do engage and do not look away then it makes a better person out of you, it sharpens you. It does not dull you.  It may be a biological bully of an enemy, but it is the type of enemy that I want to keep closer than any friend.

I want to know its strengths, its plans, and I really want to know its weak points. We will not stand off against one another posturing on a battlefield of prejudice and misunderstanding. I will speak sweetly to it, wrap my arms around it and bring it in close whilst making soothing sounds. Then I will hit it hard, where it hurts the most and where It is weakest. It is a bully and a they are never swayed by verbal bluster, they are defeated with by your actions, your lack of fear. Even if, underneath, you are petrified. Soon you become less afraid and that is liberating.

My actions will bend it to my will. I will poison it with the most potent elixirs that science can find, and I will adjust my life to hurt it and hinder it at every turn. This is not a one-time event; this is an ongoing series of skirmishes. I may not win them but if I can hold it to a score-draw then I will take that.

After all, the journey ends the same way for all of us, despite the different and interesting cargoes we carry. I intend to enjoy the rest of my journey. It is not all about the cargo. The journey through life itself is a many splendored thing that I can shape to my will. If I do not, then it will become heavier and heavier and I will see and feel nothing but my cargo: and I will have lost.

Dominic Shadbolt May 2020