My science story (and my Dad)

There is not a lot of chemistry in this post (and not too many laughs either) so consider yourself warned if that’s what you usually come here for.

After seeing some of the #IAmScience tweets and reading this blog post that started it all, I thought it was about time to share my science story. If any of my friends or colleagues are reading this and wondering why they’ve never heard this story before, it’s because it isn’t the sort of thing you casually drop into a conversation. Why am I telling all and sundry here on the blog? You know what, it’s easier that way — and it feels good to tell the story.

This is the story of why I became a scientist, not what I’ve done since becoming one. I can’t recall a particular moment in time when I said to myself, “I want to be a scientist”. Even though I made conscious decisions to study particular subjects at school and then at university, there was never really a plan or a lofty goal — I just picked subjects I enjoyed (or thought I would enjoy). I didn’t always get it right: the first time I went to university it was to study for a physics degree — I dropped out after a week.

It was my Dad who triggered my interest in science. It wasn’t really anything he said, or anything he did, but rather who he was. From quite a young age (I don’t remember when exactly), I knew that he was sick. He suffered from haemophilia — a genetic disorder that prevents your blood from clotting properly. In the most common variant of the condition (haemophilia A), the body does not produce enough of something called Factor VIII — a glycoprotein essential for blood clotting to occur. In some individuals it’s not the quantity of Factor VIII that’s the problem, but the quality: a faulty version of the protein is produced and it doesn’t do what it should.

What did this mean on a day-to-day basis for my Dad? Well, if he cut himself, he would bleed for a very long time — this would be hours rather than minutes. Being fully aware of his condition, he was obviously very careful not to cut himself. The one thing you have no control over as a haemophiliac, however, are the spontaneous internal bleeds. He would often have a lot of joint pain — because he would be bleeding internally into his joints — and not be able to bend his arms or legs very well. The pain was severe and some days he could barely walk. Even on the best days, he walked like an old man.

Because of his condition, my Dad didn’t go to school; he had some home tuition, but not a great deal (we’re talking 1940s/1950s coal-mining English town here). A lack of formal training combined with the physical manifestation of his haemophilia meant that he never had a regular job. Nevertheless he was naturally quite intelligent — he taught himself from scratch how to repair clocks and watches. He would fix them for relatives, friends, and friends of friends, and it would be done for the price of the parts plus a few pounds more — if you went to a jewellery shop it would cost at least 10 times as much. Unless it was a Timex — apparently they were a nightmare to fix and he told people it would be easier for them to get a new watch.

I was fascinated with the bits and pieces that came out of a watch. How could all of those little parts even fit inside the case, let alone work together in harmony to plot out the passage of time in regular beats? I wanted to know how things worked — as many small boys do — and this was my own (very personal) introduction to taking things apart and putting them back together.

But something else that really interested me was my Dad’s condition. It was my introduction to rudimentary genetics: X and Y chromosomes and recessive traits. The history of haemophilia itself also fascinated me. We lived a simple life in a council house, but haemophilia was ‘the royal disease‘. Royal! Through her children, Queen Victoria spread the disorder through many of the royal houses of Europe. Perhaps the most famous were the Romanovs who, after turning to Rasputin to heal their haemophiliac son, met their bloody fate in a basement at the hands of the Bolsheviks.

Anyway, back to my Dad. One way of relieving the joint pain when it got too severe, or to stop a bleed that just kept going, was to make the trip to hospital where he would be given an infusion of Factor VIII. This also intrigued me. My Dad had this disease, but some clever people had figured out what the problem was and how it could be managed (there is no cure for haemophilia). This was a revelation to me. ‘Magic’ is the wrong word, but it was certainly amazing. If it wasn’t for the fact that I am embarrassingly squeamish, I might have gone into medicine. Seriously, much to my wife’s amusement, I can’t even watch the surgery bits on ER/Grey’s Anatomy/Casualty. If it wasn’t going to be medicine, science seemed like a good alternative — but even so, it wasn’t a carefully thought out plan for what I wanted to be when I grew up, it just seemed like something I might enjoy doing.

So, Factor VIII was the answer, and it certainly improved my Dad’s quality of life. For a while. It turns out that the early 1980s weren’t a great time to be a haemophiliac in need of Factor VIII treatment. For those of you who don’t know how the story ends, the name Ryan White might ring a bell. If it doesn’t, well, here goes. At that time, many of the blood products used to treat haemophiliacs were contaminated with HIV and many patients were infected — my Dad included. It was a death sentence. I was 15 when my Dad died of AIDS. He was 48.

This didn’t trigger some kind of heroic life-long quest, either to seek a cure or to avenge the sense of cosmic injustice that I felt. And it didn’t, in any conscious fashion that I can identify (even now), cement any pact I had with myself to be a scientist. But it did leave me wanting to know more about these short and scary acronyms that had turned my world upside down. Maybe the 15-year-old me thought that there might be some comfort in better understanding what had happened to my Dad. More than 20 years later, I can tell you that there isn’t any.

So I continued on the path of science. I worked hard, did well at school, and then went off to university to do a degree in chemistry & bioorganic chemistry (after that brief and spectacularly unsuccessful flirtation with physics). I’ve been fortunate to work with some amazing people in some great places, and I’ve travelled the globe — but all of that is a different story for a different day. And even though I’m now an editor, I still consider myself to be a scientist. It’s not a job, it’s a state of mind.

So, there wasn’t a Eureka moment. It was a gradual embrace that had its roots in my childhood and, in particular, my Dad’s illness. I may well have found my way to science even if things had been different — and how I wish they had been different. But things are what they are, and that being the case, there’s only one thing left to say. Thank you Dad.

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11 Responses to My science story (and my Dad)

  1. This is a great and moving post. I am very sorry to hear what happened but it’s things like these that have always inspired people to go into science. My parents and especially my dad inspired me to study science too, but there are few things as transformative (in many ways) as the affliction of a parent with a serious disease. I am sure your Dad would be proud of you. Thanks for sharing.

  2. Cedar Riener says:

    Wow. That’s quite a story. I particularly like the corrective to the Eureka moment idea. Sometimes the path our lives take don’t abruptly turn, but rather bend over time. Thanks for sharing that.

  3. bellaxthree says:

    Wonderful post! Thank you for sharing :)
    Agreed – there is often not a single Eurkea! moment but rather a natural curiosity and for me, lots of tiny Eureka! moments all throughout my life that are probably not a big deal to others but to me they were important and set me on the path I am on today. I’ve tried to divert from science a few times but I’ve always ended up back! :D Here to stay!
    Thanks again!

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  5. Barbara C. Potter says:

    Not a scientist, but moved nonetheless by this ‘backstory’ to your caree…”state of mind.” Thank you for sharing a story that travels so well.

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  7. ERIC SCERRI says:

    Thanks you for sharing your moving story. All of a sudden I feel that I know you so much better than I ever did before.

  8. Matt Piggott says:

    I had already chosen a science degree, but my decision to become an academic medicinal chemist was very strongly influenced by my Dad’s diagnosis with Parkinson’s disease when he was 40.

    Thanks for sharing your story. It resonates with me.

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  10. Maria says:

    I came across the link to your story from one of your recent tweets and clicked because I find it interesting how people become involved and interested in science. Although your story is incredibly sad, I respect you so much for sharing it with the world, especially to spread awareness of infected blood components. Thank you for that. Your Dad would be incredibly proud of you.

  11. family7800 says:

    I got here from your pinned tweet. It really was very moving, all that your father and your family had to undergo. I am reading this almost a year and half later. Hopefully, there has been some conclusion, some justice with which you can have a sense of closure. 30 + years is too long a time. The wheels of justice are grinding incredibly slow.

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