Please Read First

Welcome to my Substack

Hello there.

Welcome to my Substack. I wanted to write this introductory post to explain a little about who I am, why I’m writing it now, and what you can come to expect from this page.

Who Am I?

My name is Tom Staniford. I am a freelance marketing consultant who does a bit of speaking and lecturing on the side- on marketing, law, psychology, DEI and various other interesting topics. I have broad interests and am endlessly curious. I’m also a sponge with unusually good retention, so my ‘passing interests’ often result in the accumulation of a great deal of inconsequential information. Some of which will feature here.

Medical Cause Célèbre

I am also one of about 16 people worldwide with MDP Syndrome, a rare and spontaneous genetic mutation. I won’t bore you with full scientific details right now but, in essence, this ‘spelling mistake’ in my genome means I don’t process fat in the normal way. As fat is intrinsic to many biological processes, this has caused lots of different issues - lipodystrophy, diabetes, contractures, testosterone. Fat is also a ‘sexy’ topic in Western culture, and a large contributor to my Z-list medical celebrity status is down to the half dozen documentaries that have been made about me on BBC, C4, RTE, Sky, Discovery Channel, etc. There’s also an endless stream of social media “10 people you won’t believe exist” clickbait I’m often #10. Best ‘til last. etc And there’s loads more if you Google my name.

Sympathy

I mention these issues now because the reality is that this blog/page/stack will often return or refer to my unique collection of medical issues. I want to underline right now that this is not a pity party, nor will it ever become one. I’m not seeking sympathy or support. For the most part I’m very content with my lot, and have much to be thankful for. There is no covert emotional agenda here. If I’m after sympathy, and it will be exceedingly rare, you will definitely know because I will specifically ask for it.

Not All Doom and Gloom

I wanted to clarify that because sometimes there’s a misconception when people write extensively on their medical issues; that they’re descending into a whirlpool of depressed trauma and victimhood. In my case, I’m just making objective observations of stuff that is happening. It would be weird if I didn’t mention things that are happening to me. It’s just reality. The emotional judgments are optional. That being said, I do realise endless med nonsense is just unintendedly depressing to read (“Oh God, what medical issue has he got now…”), so I really try to ration it and pepper it with sunshine.

Bella in Sella

Which brings me to cycling. There’s not a huge amount of exercise options available for me, functionally. Cycling, and more specifically road cycling, is therefore a physical, psychological and dare I say spiritual pursuit. At one point it took up a significant part of my life, with some small success, and despite ‘real life’ and health getting in the way it’s still a big part. I also cut my teeth in marketing for cycling brands, and have written for various publications, so like to think I am part of the road furniture on a very very minor scale.

Why Now?

So why have I started this Substack? Two reasons, really. I have always written, and always considered myself to be a writer. But as my ‘day job’ is basically strategizing or writing for clients I find I have no words left for myself. I’ve wanted to do this page for years but lacked the inspiration or headspace. Numerous writers I tremendously respect have told me I must force myself to do it and. quite simply, I’m running out of excuses not to. Related to this, I have some big medical changes this year (double cochlear implant and double leg amputation - hope that got your attention?) that I feel will be a really interesting and therapeutic journey to document. And here we are.

Triple Threat

Broad strokes: I may be deluding myself into thinking I have 3 small distinct groups of followers on Twitter, my main social account : cycling, diversity/inclusion/DEI, and then academia. I’m hoping that our existing rapport will encourage them/you to come here to read about those topics, and discover I’ve also written about lots of other stuff. So even though they/you may have no existing interest whatsoever, they/you may learn and expand horizons and, if nothing else, be momentarily entertained.

On The Menu…

We’ll see where we go. But I’m certainly intending to hit the topics I’m most familiar with over the coming weeks, months, years and seeing new places they lead to:

• cycling - all disciplines (road, MTB, CX, gravel, ultra, leisure, transport/utility)

• medical stuff - esp patient engagement, rare disease, advocacy, science comms

• academia - law, psychology (esp cyberpsychology and sports), marketing, branding.

• Food and drink - all food/cooking, coffee, red wine, single malt whisky.

• Other stuff - fountain pens, guitars, tailoring, music, sci-fi/fantasy, Mark Knopfler.

Suggestions, collaborations, engagements most welcome.

Sick of Influenzas

I don’t know about you, but I’m also sick to death of clickbait and influencers. Not all, naturally. Some influencers are really knowledgeable and worth following, but there’s a burgeoning majority who are just without any real substance. As somebody who obsesses over quality, I find it personally offensive when I come to hear/read them on their specialist subject and realise they’re essentially clueless. I could learn more with 5 mins on Google. And I’m hoping that this page will be an antidote and have thoughtful, considered, robust material.

The Protocol

I’m hoping to be able to summon the motivation to write here a few times a month. Essentially weekly or fortnightly without actually committing to that distribution. If I haven’t, rattle my cage. I feel really bad when I fear I’m letting someone down, so shout- it could well be the urging I need. I’m also really keen to experiment with replicating every written post as a standalone companion YouTube video - good for those with limited reading attention, accessibility preferences, etc. Watch this space,

Comment (Not Content) Is King

In a similar vein, comment on what I’ve written. It helps it go further on t’interweb but, more importantly, means we get to have some really good conversations and everybody benefits from the shared expertise and commentary. If you are an expert or have some deep insight on a topic I’ve somewhat superficially covered, please do weigh in, I would love to learn more. And I’m sure readers would too. I’m in the process of working out where is best to comment on these pages. Substack itself? Or… (see below)

Sharing is Caring

Comments, discussions, criticisms all welcome. But make sure your criticisms are fair, and you do know what you’re talking about. I’m really good at (and enjoy) taking constructive criticism on the chin. If it isn’t constructive, I will cut you off at the legs and I will beat you to death with the bloodied stumps. You’ve been warned.

While I’m working out where best we can share/comment, just shout at any of my socials (in order of priority/speed of response):

Twitter, Instagram, Threads, BlueSky

I am on others but, TBH, they’re just placeholders and you’re unlikely to hear anything.

Thank you, and I really hope you enjoy your reading time here.