I’m now asked all the time how I’m holding up in light of recent changes in my life, and I have a hard time answering that question, as I am still not sure – except that I am still here, more or less. Over the past year I’ve grown to embrace the notion, reinforced very strongly by my own frequent experiences, that I am disabled (in the medical/legal sense). I’ve had a harder time embracing the idea that I am now part of a minority group (I have strongly accepted that I am a senior, white, male scientist in the upper-middle class; which conflicts with “minority” in every way). Categorization aside, one conclusion I’ve been grappling with is the strong sense that I have been diminished. I can’t think as clearly, my memories are fading and my body is increasingly decrepit in physical and physiological ways that are becoming obvious to me. And yet I struggle to explain these feelings to people. So here I am, writing a blog post that is partly about what it’s like to feel that my personal “glory days” as a human scientist have passed. It’s not very uplifting stuff although there is a surprise of sorts at the end.
Stomach-Churning Rating: 1/10; a medical imaging scan of my disintegrating body, and a cartoon of surgery.
Before I go into my sob story, I should reinforce that there’s not just doom and gloom here. There is a heady, very complex mix of feelings. I’ve still got a great family (save the demise of all of my close relatives from my parental generation and before) and friends. Much of the time I’m still able to smile and have some fun. I’m not a Syrian refugee clinging to life in a tent while the world turns its back on me, or an Indonesian orangutan aloft in a tree watching the forest burn around it while the palm oil plantations spring up in the distance. All is relative. I know my life best and that’s what I blog about, so here is that infinitesimal perspective on life.
At work, I am buoyed by a fantastic team of scientists; some of the best I’ve ever worked with. They churn away at the science while I try to lead them. We’re doing some very hard science lately; some of the most challenging work I’ve been involved in. And my declined health hasn’t helped me to lead them, so sometimes they’ve had to rely on each other for spans of time. It’s not the best analogy but I often feel like we are in the open sea and I am swimming in front of our boat full of precious science, navigating while I barely keep my head above water and they struggle with the oars and their own exhaustion. In real life, it’s seeing their smiling faces and the wonderful science they show me on a regular basis that helps me keep afloat, personally.
Indeed, one take-home message of this post is that, while feel myself diminish, struggling with normal ageing and major new health problems, I see those I mentor grow and I get a vicarious thrill and pride from it. This is something that I know many research scientists experience to varying degrees, and often in conjunction with the too-often-metaphorized(?) experience of parenting and having the joy of seeing one’s offspring mature while one feels old age encroaching. As many research managers witness, I see my team’s collective research expand and build new levels of coolness in our little domain, I get wiser by reflecting on the successes and failures, and one could say I enjoy some credit from my team’s work by navigating our general course of research while they do the daily technical work and I help mentor them through their careers.
At the same time, as my collaborations and range of projects broaden, following my increasingly integrative interests, I see my relative expertise decreasing. It seems a long way now from my postdoc years, just over a decade ago, when I could run most or all of the software and hardware I needed to do the science. I am increasingly uncomfortable with that. However, I still learn new skills and knowledge so I am far from static as a scientist, and I am pushing myself more and more to learn more, wrestling with my age/health-imposed difficulties in learning. Furthermore, as a human being I feel far more aware of the world and the broader issues at stake than ever before (thanks in part to social media, I should add; but also thanks to my curiosity about life beyond my research). Improving my mind is still a goal of mine. The “diminishing” label I apply here is not that fair perhaps, but it’s how I feel about myself and I am sure there is some truth to it. It is the foe I grapple with.
So I get bemused reactions when I’m asked how it’s going and I respond, somewhat glumly, that I’m “hanging in there”. Many know I’m having health problems and tell me they are inspired by how I’ve held up and how well my (team’s) research and science communication and other work seems to be going, from the outside. Indeed, we’re cranking out more papers and surprising amounts of funding (see below) than ever before, so on paper it does look very good. It helps a little to hear those comments of how impressed some friends and colleagues are, but I don’t feel very impressed with myself. I feel lucky to have a great team of scientists and to have a great job in an insanely good laboratory environment, because otherwise things would be very different for me. I’m starkly aware of my privilege and feel vastly fortunate for having it.
My personal experience in work/life doesn’t reflect the joy of “success” that might seem to spring forth from my CV or the image that the outside world might get of me. I’m seesawing back and forth between those intermittent joys (and other happiness that comes from life away from work!) and a sense of hopelessness. I see the grim state of humanity and the broader world, and I look within and see my own decrepitude advancing, and I feel sad. It’s not a clinically manic-depressive seesaw but I can see some similarities when I apply my scientific detachment skills and look at myself from a quasi-objective perspective. I’m not the naïve, “everything is excellent” optimistic grad student I was—I just see flickers of that person these days. Sometimes I like to see him.
Much of the torques applied to the seesaw come from my oscillating health status- I alternate between good and bad days, with hints of a broader weekly rhythm that my physicians and I are still trying to grasp. Those oscillations determine everything for me: I can be bursting with energy and make strong inroads on my “to do” list, or I can be utterly drained and unable to do much more than stare vacantly or maybe fire off some emails to make incremental progress on work. I tend to be lingering somewhere in the middle, with far less vitality on average than I had two or so years ago. I look back on those past years and feel like I am looking up at the peak of my life and career. Time will tell if that’s “true” in some way or not.
Regardless, over the past 18 months there have been huge “valleys” from when I end up in hospital after major epileptic attacks, with a couple of weeks of recovery afterwards. Overall, my capacity to do what I used to be able to do has been halved. At best, I feel like I can operate at maybe 90% of my peak capacity and that never lasts long. Some of this is the inevitable decline that comes with entering one’s mid-forties, but some is a new step-change that has hit me over the past 18+ months since I became an epileptic suffering from tonic-clonic (“grand mal”) seizures every 2-3 months. Why is this suddenly happening and why haven’t the doctors resolved it yet? Well, the short answers are that my brain had damage (I told that story here) that can lead to epilepsy later in life, and that medicine still isn’t perfect. Epilepsy that cannot be entirely suppressed by existing medication is still common. We’re still experimenting with medications for me but it’s too soon to tell if we’ve found a solution, and we might never.
I heard some wise words a while ago that “we’re more content to blame ourselves than to accept that some things are beyond our control” and I’ve taken that to heart. Life is scary and short and it’s true that a lot is out of our control, especially the end of life. In reflection, I’ve been tempted to look back on choices I made in life and try to blame myself for what damage that has wrought on me (or others), but in terms of health I question that assumption. I may just be the victim of bad luck (genes, etc), but some people find bad luck too hard to accept, implying an indifferent universe rather than free will leading to misfortune/fortune. I’m not out of hope but I’ve accepted that the current state of my life might be just how it will be, and that’s been a hard lesson, but one I’ve learned again and again with my many chronic health problems over 20+ years. I don’t blame myself (much) for all that. More than ever, I appreciate the other wise words that “everyone is fighting a struggle you know nothing about”. I might look to an external observer like I’m kicking ass, but I feel anything but that kind of triumphant, fist-pumping jubilation.
I feel lucky to still be here, and eager to keep it that way, but I am so, so tired. Intellectually, physically, emotionally, it’s like a vampire has been paying me regular visits. And so I have to sigh, more than I used to, when confronted with bullshit like excessive paperwork or petty politics or something else I wish I didn’t have to endure, deeply feeling life slipping past as I do endure it, but that’s life for you. And at work, as a senior research manager, that’s often my job to endure it, in ways I’d never experienced as a junior researcher. I just have to cope with being pummelled by waves of difficulties and not grow weaker if I can avoid it. Coupled with life’s other burdens, the diminishing scientist faces a different beast of challenges and can often feel very alone. It’s a strange new place I’ve found myself in, far more complex than the worries I had as a postdoc, with harder choices to make and vast grey areas to traverse.
Nonetheless, as welfare science likes to term it, it’s entirely “a life worth living”. I have to pick my battles more than I used to, and I’ve had to learn to take more time to get exercise, rest, and avoid the stresses (or even unpleasant people) that can cause my health to take rapid downward spirals. I’m more fragile in many ways, such as having to stop doing karate because my shoulders have weakened. Here’s some interesting anatomy for you from a recent MRI scan of my right shoulder:
My seizures cause my shoulder flexors to spasm, raising my arms up and crushing my humerus against my glenoid cavity of my scapula and causing occasional dislocations that abrade the humerus against the rim of the glenoid. The result, after numerous seizures, has been the wearing away of the articular cartilage of my shoulder and then the crumbling of the bony head of my humerus. Thus, once my NHS surgeon is ready to in coming months, I am due to have my coracoid process of my scapula cut off and moved, with its attached muscles and ligaments, to be screwed into the front of my glenoid cavity, bracing my humeral head more tightly against the glenoid and thereby resisting future dislocations. Luckily that operation can be done with several small incisions and endoscopy; invasive as the surgery is; thus recovery time won’t be so long.
It amuses me that all of this intense surgery looming on the horizon doesn’t worry me. I just want it done. I’ve been through a comparable surgery with my left shoulder, involving screwing my greater tuberosity back onto my humerus, so I know what recovery is like, and now that shoulder is doing fine. All that aside, my physical integrity has declined and I feel it every day. I may never return to my karate classes and earn that black belt I was seeking as a life-goal, but time will tell. I am trying to do what I can to remain as strong as I can for as long as I can.A year from now all of my major funding and most or all of my research team were due to finish or be finishing. Over the past year, I was thinking forward to this eventuality and truly looking forward to having a smaller, quieter team, with less pressures on me. Many of those pressures are self-imposed because I am still ambitious and love doing science. I can still feel that youthful passion welling up inside me sometimes, so strong that I imagine it to be a tidal wave that could consume the world. It fuels my drive to try to do more, better science, but is dampened now by the problems I’ve lamented above, but it’s still there. So that passion and drive led me to, on a whim, resubmit an EU grant that was rejected a couple of years ago. I didn’t take it super seriously and so writing the grant didn’t stress me out. But a week after submitting it, I was back in hospital anyway, in bad shape. Over the following nine months, I grew to hope that the grant wasn’t awarded and expected that it wouldn’t (given <20% funding rate especially as a young Advanced Investigator in that ERC funding programme; https://goo.gl/Ps0Rhd if you want to know what that means). A big part of me still wanted to have that smaller team and less (or no) funding. I’d even contemplated leaving academia. I dream sometimes of retiring early to a quiet life with my family or wandering off into some jungle for a foolish adventure, but neither is realistic.
Yet a few weeks ago, the email from the EU came with an answer. I got the grant: 2.5 million Euros for 5 years of research on dinosaur evolution and biomechanics. More about that later. The funding details are still in negotiation but I now am on course to be advertising (in ~August) 4 new jobs to work with me for up to 5 years on this project, beginning in October. My reaction has puzzled those colleagues I’ve told about the grant, although I have kept that news quiet (until now) while I finish the paperwork for the grant award. I feel mixed about getting a large grant at this time in my life. It’s a helluva lot of work and five years seems a very, very long time to me, and to focus on one major theme—and to study dinosaurs.
I had also looked forward to moving away from dinosaur research—but, like Al says in the video above, their siren call can drag us back to the Mesozoic era with questions that entice us and with spectacular fossils that are a riot of fun to study. In this case, we’re going to be looking back on the “locomotor superiority” hypothesis that has been bounced around for >40 years as a possible explanation for why dinosaurs flourished whereas other archosaurs (except crocodylomorphs) didn’t, and how much bipedality relates to that, in terms of various behaviours and motions. Can these questions even be answered? We shall see.
Yes, boo hoo! Poor me, getting a coveted grant and all that! I am not surprised if that is hard for others to understand, and I still am figuring out how I feel about it all. Professionally, this is a wonderful thing; no question. Personally, it’s pressure I didn’t need to put my disabled, diminished self through. Irony and conundrum aside, I want to do it and I should try. Regardless, off I go, with a new-team-to-come and my research focus dominated by one main project, the largest grant I’ve ever managed (by a long shot!). It’s interesting times for me ahead. Life has come full circle, returning me back to science-ing the dinosaurs/archosaurs I’d focused on in my PhD work. But I am not the same person, and so it will be a very different experience. Somehow I have to balance this challenging project with the struggles in my life in general, and that will test me in diverse ways. I’m sure there will be many surprises in my work and personal life during the next five years, and I’ll be sharing them here on this blog when I can.
I’ve tried to express my own journey through the big ups and downs I’ve seen over two years. Maybe it will help others who are quietly, or noisily, struggling. I’m curious to hear from others that have experienced feelings of themselves declining as their careers/lives (in science/elsewhere) move along in some direction.
Hi John
this is the first time you’ve spelled out what ails you. rough stuff. I’ve seen my wife Claire go through similar struggles.
My decision to stop teaching and only do research is that I want to maintain quality and let quantity drop off. Maybe that would be a good target of you, i.e. do 3 projects at 100% quality instead of 6 at 90%.
People here in Colorado are having good luck treating epilepsy with high CDB/low THC strains of cannabis. Worth a try?
Rodger
Thanks Rodger! I’ve hesitated from going into the epilepsy/related explanations before on this blog because I was too overwhelmed by the experience to put it into words until now. I’ve heard a lot of recommendations for the medical cannabis but also seen systematic reviews that question its efficacy, but it’s in the queue to try maybe. I think I might also have reluctance to try because it feels like going back to college/grad school habits! 🙂
Hi John
Sorry to hear more of the saga, although congrats on the grant. The only grants I’ve ever received were ones I never thought I’d get, so didn’t fret too much —- there must be a lesson their somewhere.
Thanks Christine- I’m still convinced that a good idea will get funded with stubborn resubmissions and creative targeting, but the randomness in funding success is a huge factor.
I admire your bravery, John. Looks like you have the right approach- do what you can, don’t beat yourself up about not doing what you can’t do, and let others help you. Have more quality time and less bullsh1t time. Why not go visit the croc place near Oxford again, that always cheers me up!
Thanks Lorna; good idea on the croc visit!
Hi John. I’m sorry to read of your difficulties. There is no right or wrong way to deal with this sort of stuff. No road map or guide book, no protocols or learned papers to referrer too (and maybe that is particularly hard for a scientist?) It might be described as a bereavement, for the loss of the health the life you had and future you hoped for. You can only do your best with what you know and feel on a day to day basis, and if you don’t feel you know what that is (which is highly likely!) maybe it would help to talk to some one experienced in helping people adjust to their new world? The link below, whilst written for those affected by cancer, could equally apply to anyone coming to terms with a life changing or life limiting condition. Be kind to yourself.
http://www.macmillan.org.uk/information-and-support/coping/your-emotions/dealing-with-your-emotions/cancer-and-your-feelings.html
Bereavement: yes, well put- thank you! I am lucky to have a therapist as a wife and I’ve gone thru therapy before, plus this blog serves as therapy, so I’m processing this life-change and feel like I’m doing an OK job so far. It will be a long journey. I may enlist extra help if I feel I need it, but I’m a stubborn git and am not ready to. 🙂 Thanks also for the link- I will check it out!
Dear John,
I read your latest blog post last night. I found it humbling. You write that you have to come at things from your privileged – white, male, highly educated, well-off – status. The same goes for me as a reader. I’m white, female (well I do consider that a privilege ), well-educated. And, as far as we know, healthy. So, reading your story, what have I got to gripe about? I should simply shut up.
Yet, I recognized so much of myself in what you write. I’m ageing, I turn 50 this year. And I notice both my mind and my body are … shall I call it degenerating? Because, even though that’s what it is, it sounds deprecating – not the sort of thing you might get yourself to accept.
This is where the hard part lies, isn’t it. You have to accept what is happening, without giving in or giving up on yourself. So what if I find I get muddled when faced with complicated software or itineraries? That’s just the new me! Yeah, the kind of person I used to view with such condescension. Well, at least I still know how to spell condescension. Could’ve gotten awkward then.
I find I have spells. Bouts. Moods, you might say. I float from ‘hey, this isn’t so bad, at least I still have my family and my health’ to ‘yeah, but my dad died last year, I lost my job, the cat just vanished, and why do I get tired so easily lately?’ through to ‘what the hell is happening here, I want to get off!’
And yet, of course, I don’t. Life is still precious to me. I just somehow want it to get better, or if that’s not on the cards, I want to trade in the cool stuff of when I was young and fit for cool stuff of old age – wisdom, serenity, lovely white locks (none of that sandy grey, thank you very much!), perhaps a spot of gardening.
I guess my problem is that I’m stuck somewhere between irresponsible youth and free-of-responsibility old age. I have to go out there and find a new job. I have to eat and drink and do sports responsively, instead of bumming around and catching up on the fruit front when it gets too bad. I guess my problem is, life has caught up with me.
You write that you think a lot about the state of the world, and that rationally, you find it hard to find a reason to stay optimistic. Yes. I think this is why people invented gods. Not just to explain why things are as they are – if it were only that, we could have turned to pure science so much sooner – but to understand why, in the face of all the misery surrounding and happening to us, we still want to hang in there. We want to find a purpose.
Truth is, I don’t think there is one. According to my husband, we may all be actors in an extremely early version of an AI virtual game, programmed to look for the solution: the meaning of life. That would go some way towards explaining what is going on. Personally, I think survival and procreation are our only true motivators. Whatever else we want to create for ourselves as purpose is always going to be a rehash of those two instincts. Our entire moral compass is based upon them.
And so, we have this thing called hope. Hope is a tricky thing: it helps you hang in there, but it can also make it harder to accept matters as they are. It can steer you clear from the rational conclusion of thinking about the state of your life and the world in general, while also preventing you from taking the next step towards the rest of your life.
Do you suppose hope is the emotional produce of a hormone? Something that comes in waves, then seems to dwindle and shut off? A chemical that is produced less systematically and regularly as you grow older, perhaps? Well, wouldn’t that explain a lot. But I get side-tracked.
My main point in writing to you, I think, is to tell you: thank you. You boldly facing your epilepsy and ageing, and how they are changing your life, has proven therapeutic for me also and given me the courage to think just that little bit harder about why, lately, I have been feeling so low at times. You have helped me. So, inasmuch as you believe your purpose in life is to help others better understand complex concepts and beings, you have just fulfilled it (once more, I daresay).
Stay strong, my Twitter friend (I could write another page or so on social media relationships, but this, also, would be beside the point),
Margot
My deep thanks, Margot, for your thoughts. My reply will be brief as we’re mourning the sudden loss of our beloved young cat today (image added above in memoriam)… another very hard day. I agree, I see no evidence for “purpose” in existence except for that imbued in our biology, like you say. Although to add complexity, our cultural constructs get piled on top of them (e.g. get a PhD, go see that rock concert, etc.) — but then we’re in the perilous realm of evolutionary psychology, which is where I get off the explanatory train. I’m glad that this post has helped me meet people like you that have had analogous experiences or concerns. It helps me to hear from them, so I thank you, too, Margot!
Dear John,
Just returned from wifi-challenged trip to see your reply. That is so sad. I feel for your loss. All the best … so much for what words can express :-((
Quite the post, John – thanks for sharing – lots to digest and to reflect on. The same dart board we tossed on in 1990 is still up in the basement if you’re ever in the area.
Thanks Curt! No way, you’re joking, right? The same board? I wasn’t even sure if the same basement (or something like it) still existed. I have been away from Madison for far too long…
Dear John,
Let me tell you funny things from time to time, to improve your mood.
For instance, two years ago we have built a real-size passively-pacing pareiasaurian model. It is based on my study of echidna walking and pareiasaurian trackways.
The model is sculptured by my mother and is beatifully painted.
It is accomodated in the Moscow Polytechnical Museum, where they use it to inspire children with paleontology. At first, children dig pareiasaurian bone casts out of the sand, then they mount the bones together and get the whole pareiasaurian skeleton, then they stydy the cast of pareiasaurian trackway, and finally the walking model appears which weighs up to 100 kg but can be easily driven by two ten-year old children (one pulls it by the rope and the other rocks it from side to side). Then, children try to imitate this rocking pace themselves.
So, it’s going on.
I love it!! Thank you, Alex!!
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