Coping with illness: sound minds, unsound bodies

Being sick threatens employability, legacy and self-image. Two recent victims of stroke and cancer tell their tales

May 26, 2016
Person caught in spray of wave, Worcester, England
Source: Alamy

In February, I was somewhat unwell but feeling good about how things were going. I had just completed the manuscript of my fourth monograph and was relishing the thought of turning to the fifth. My open access publishing platform, the Open Library of Humanities, was enlisting institutions from around the world and I was due to speak at a range of fantastic events. My institution, Birkbeck, University of London, had just confirmed that, from October, I will officially be a professor – before my 30th birthday. Yes, I had a very bad cough, but how terrible could that be when all else seemed so right in my world?

It turns out that a cough can be very terrible indeed. In my case, it caused me to have a stroke, leading to a prolonged hospitalisation and a quest to begin thinking far more thoroughly about what I value in people, institutions and the academic world in general.

Although the aetiology is hard to pin down, my doctors think that they have got to the bottom of what happened to me in early March. I have been a long-standing sufferer of rheumatoid arthritis, a painful autoimmune condition that attacks the joints and organs. In my case, it also causes vasculitis: an attack on the blood vessels. As a result, my vessels have been substantially weakened, even while my regular treatment suppresses the immune-system components that have some responsibility to repair them. The final piece in the grim puzzle was to contract a moderately resistant bacterial infection that took over a month to disappear. The coughing that ensued dissected both of my carotid arteries (which supply the head and neck with oxygenated blood), leading at first to a 14-day hemiplegic migraine that sent me to hospital.

While I was in hospital, the ophthalmologists discovered that I also have a rare eye complaint called retinoschisis. I remember quite distinctly sitting in the ophthalmology clinic, where a group of junior doctors were all lining up with great enthusiasm to observe it. It sticks in my mind because, at that moment, the kind doctor who had been entrusted with my care knocked on the door and told me, very calmly in a European accent that I never could quite place, that I had definitely had a stroke.

I was then sent for various urgent scans because they suspected that the vasculitis may have been the cause. After telling my long-suffering wife what had happened, I found myself alone in the ward – or, at least, as alone I could be in a ward of four, with the ghastly green anti-bacterial curtain pulled around my bay.

I felt nervous and unsure. Of course, it seemed totally ridiculous and unfair for all this to have happened to me, especially at such a young age. But, more broadly, I was worried about the future. I was still potentially having strokes at this point. The vascular surgeons who had visited me at 2.30am told me precisely how risky it would be to operate (while insinuating that they might nonetheless have to do so), entailing that I would just have to ride it out for now. But I was also thinking about the plans that my wife and I had made, the friends we had and just what the recovery was going to look like. “Stroke”, to me, was something that meant disability and change. A stroke was something that other, older people had, and from which they emerged modified, somehow incapacitated. I did not think I knew any academics who had had strokes and continued to work. And I knew that cerebral vasculitis would have to be treated with a variety of nasty chemotherapy drugs (of variable efficacy) that are usually used for cancer treatment.

Having just signed my new contract on the day before I took myself to accident and emergency via my GP, I knew full well that “incapacity” was a reason for removal from post (within the bounds of employment law, of course) at my institution. And so it naturally sprang to my mind that the identity and livelihood that I had laboured so hard to build, in the institutions that I loved, might now collapse before my very eyes. Even if I didn’t die – which I thought at one point could be a serious possibility – other questions popped unbidden into my head. What if I couldn’t think when I was discharged? What if I couldn’t write? What if I couldn’t travel or speak? More broadly, as I wrote on my blog to update well-wishers, I reflected on how tightly I tie my own worth to being able to think, move and exist in a way that can be thrown out the window in a few minutes. How would my friends and colleagues react to me if I was not the “same person” as I was before I had my stroke? What did it mean to have a potential problem with your brain but to still be an academic?

Core to these issues is, of course, the acknowledgement that I am not just an academic: I am a person with a body that can fail, and who is more than the sum of every academic output, grant and project to which I have committed. Yet there is a strong, natural tendency in the academy to worship intelligence. Indeed, here – and without using his work as any kind of self-help philosophy – we might draw on the commencement address given in 2005 by the American novelist and academic David Foster Wallace at Kenyon College in Ohio. Wallace noted that if you “worship your intellect, being seen as smart, you will end up feeling stupid, a fraud, always on the verge of being found out”: the impostor syndrome with which many of us can feel overly familiar. Indeed, this passage has always drummed home to me that if you worship your intellect, you are likely at some point to have it taken away from you. Whether you are cut down in your prime or survive to an old age, few of us are fortunate enough to keep our mental acuity to the very end.

But it turns out that this is not the unavoidable fate of victims of strokes or sufferers from vascular-inflammatory diseases. Thanks to a stream of kind messages from friends and well-wishers, I have learned of many who have returned to academic life. And this is, in part, why this piece was worth writing for me. For many, admitting to illness comes with stigma and shame. Some people simply don’t want to be out there as a public voice defined by their illness. I was lucky. I have networks around me that came forward in confidence and offered helping hands and listening ears for me to talk about how I felt and what I was going through. Birkbeck could not have been more supportive. But not everyone is so fortunate.

I also want to acknowledge that stories of illness and disability are about people, not processes. Some may feel differently from me about their own unique conditions and see any “learning” from their conditions as offensive. And it is certainly true that people with disabilities are not there to teach the able moral lessons; we do not suffer or differ so that others can learn from our experiences and become better people. So I write only about the specifics of my own thoughts. But I do feel that this episode has changed my outlook on life. And I know that reading the positive stories of others cheered me at a frightening point as I sat on ward Eleven West.

In the end, since I enjoy my work and life, it is very good news for me that the doctors expect me to make a full recovery. But the shadow of what may have been looms large, and I will remember those dark days. If I had incurred severe loss of function, either mental or physical, leaving me unable to do my job, which of my friends and colleagues would still see me? I feel sure that many of them would have continued to be my friends, for they are kind people. Yet the circumstances that brought us together were very different to that shadow world that I glimpsed, and it is hard to say what would stand the test of time.

Either way, I will redouble my own efforts to be kind. And I will make every effort to see beyond the work to the people inside and outside the academy whom I am proud to call my friends.

Martin Paul Eve is professor of literature, technology and publishing at Birkbeck, University of London.

Umbrella pulled from hand in gust of wind

Being an academic who travels frequently, I had got used to some minor ongoing stomach complications. Last summer, however, I began to develop some annoying symptoms that were initially diagnosed as post-infectious irritable bowel syndrome. But by February, a routine colonoscopy revealed that I had a malignant tumour in the colorectal area. Further radiology testing showed that some of the cancer cells had spread to the liver. In the jargon, I was diagnosed with stage 4 cancer. There is no stage 5 – or, rather, there is, but it is more like the Lands of Always Winter.

A cancer diagnosis is a deadly serious thing. All I can say is that no amount of mental strength can adequately prepare you for dealing with such a blow. Your new condition as a cancer patient appears so unreal to you – particularly as much of the flood of new medical information that accompanies it is contradictory. Yet, like it or not, it is an indelible part of your own personal chronology. Although I am still relatively young – I just turned 50 – I am now a cancer patient for the rest of my life.

It is surely impossible to be diagnosed with cancer and not to think about your own mortality. Mine finally dawned on me as I was walking down Gellért Hill in Budapest, nearly a month after my initial diagnosis. It is staggering how a small part of your body (in my case, a four-centimetre tumour) can wreak such havoc on your health. However, as an academic, you are also likely to think about your mortality in academic terms: what is your intellectual legacy and how much of it will endure? You ask yourself if the articles you are preparing for the next research excellence framework will be your last contribution. Every scholar may aspire to write one final magnum opus: the culmination of their career – if, ultimately, an act of vanity. That may or may not happen in my case.

One of the hardest challenges a cancer patient faces is how to inform others about their condition. It is not one of those topics that one can easily introduce into a conversation over coffee. Initially, I told a few close friends and family, particularly those who had some medical knowledge or experience with cancer. I really had to think very hard about how to inform my 16-year-old son. I was also advised – rather blandly – by human resources to inform my dean and head of department, which I did. However, my instinct was to confine the news to as few people as possible; I just wanted to get on with my work.

However, once I started chemotherapy treatment, it quickly dawned on me that some of the side-effects, such as hair loss, would be too noticeable to hide over time. So, during the Easter break, I decided to make a general announcement by email. I am so glad I did. There is no way to express in words the warmth and concern expressed by my colleagues, some of whom I hardly knew. I have been flooded with offers of practical help, such as cooking for me, accompanying me to my medical appointments or watching my son. The other day, one of our PhD students baked me a delicious banana bread to make me feel better. There have been all kinds of such acts of kindness that will be hard to ever forget.

I am pretty sure that my experience of cancer will not make me a better person. There is no nobility in illness. But I do have one plea. The news of the severity of my condition was communicated to me in an offhand and patronising way that made me lose sleep for several days. This caused me to reflect long and hard about how universities deal with students in vulnerable conditions. I am sure that many students must have had similar episodes of personal disarray on account not so much of bad or confusing news in itself as of the way it was conveyed to them. Perhaps it would be a good idea for academics and administrators to consider how to better communicate information that can affect students’ lives.

But I do not want to become a cancer bore. On an optimistic note, I am happy to report that my experience with chemotherapy has been a positive one. Despite the horror stories, the technique has made huge advances in patient comfort and I have not experienced any of the side-effects, such as nausea and vomiting, that could affect personal or professional life. Every person’s experience is different, but in my case, chemotherapy felt like sitting in the middle seat on a long flight with a mild hangover: nothing terribly problematic for an academic like me. I am very fortunate to be receiving outstanding care at University College Hospital and at the Macmillan Cancer Centre. The nursing staff, in particular, have been absolute angels. I am an atheist, but God bless them.

I understand that my experience may be atypical, but I personally feel that academic life provides hidden pleasures that enable you to escape traumatic personal conditions. Now, every time that I engage with my academic work, I look at it from a new perspective. However mundane the task at hand, the time I spend concentrating on it is time that I am not thinking about cancer. And that is a major blessing.

Lawrence Sáez is professor in the political economy of Asia at Soas, University of London.


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Reader's comments (2)

These stories really spoke to me. I was feeling the usual tired but well last June when a routine blood test for my diabetes management showed high blood Calcium levels and on Monday my GP sent me for a CT scan as soon as possible, on Wednesday. When he mentioned malignancy my thoughts went to bowel cancer as my Mum had that (and I've already developed quite a few ailments that Mum had!). I was gobsmacked when the result came through an hour after the Wednesday scan ... a large mass on my right kidney. Not in our family at all. I was also anaemic so was sent for blood cross-matching and then went back to Uni to meet with my newly-formed multicultural singing group and told them the news. As it happened, my HoS looked in to comment on the singing so I told him too. I was just blurting it all out, shock I think, it was like I had to say it to believe it. But in hindsight, I am very glad I was so open about it as the tidal wave of support I got was just incredible. It buoyed me up in my darkest moments, and like Lawrence, I won't forget all those words, cards, phone calls, flowers, puzzle books, visits and introduction to my new vice - colouring in! My singing group even kept going without me and sent recordings of their work, I was so touched. I spent Thursday in our small local hospital eventually getting 2 packs of blood; it took a detour to a town 50k further up the road before coming back to me! I was living in a small town on the Darling Downs about 30k from the University campus. During the long day in hospital I amused myself by quizzing the medical student my GP so thoughtfully sent to see me ... for 3 hours in all! Human Biology is my core field in science so we had a delightful long chat - with an exam coming up, he really appreciated the revision! Once a teacher, always a teacher, even in extreme circumstances. Friday it was the 2-hour drive to Brisbane to see the specialist my GP had miraculously managed to book for me. The news was grim - it was stage 4 as it had spread to lymph nodes, and with underlying issues of diabetes and atrial fibrillation he wasn't sure the team would decide for having the operation to remove the kidney. If no operation, then I had weeks, not months, to live. It was surreal - still is really - how could I be so close to dying when I didn't even feel sick! I'd had no obvious symptoms, the whole thing just seemed impossible. This prognosis was delivered with great kindness and empathy, yet clearly ... my partner and I both understood the import of what he was saying. It was also clear that he WANTED to perform the surgery but it would be a team decision based entirely on their estimate of my survival chances. He wisely sent us back home for the weekend to put our affairs in order, and booked me into the hospital on Monday afternoon for tests to see if the operation would be feasible. If it was, it would happen on Thursday. All so fast! After we cried in the car and the local burger place waiting for the traffic jam to dissipate, I spent the journey home phoning family and friends. Not easy calls, but necessary and I wanted as many as possible to hear it from my voice rather than read it in an email. That weekend was a miasma of things to do - more calls, emails, sorting out my work and a demanding extra project I had been running, checking into the hospital online (the questions they ask!), looking up Powers of Attorney and JPs to witness documents, finding insurance policies ... exhausting! But it was done somehow with some late nights and Monday we were back on the highway to the hospital. The next two days were tests - CT, mRI, 2 lots of nuclear medicine to see how each kidney was working and to look head to toe for other tumours, and a complete cardio workout. All the time I was hoping for good results so the operation could go ahead. On Wednesday the specialist came in triumphant "You're going to lose a kidney tomorrow!" It was the best news! Now I only had to worry about not dying on the operating table, I felt confident that if I got through that, then I would get through the future battles, and obviously the team liked my chances of coming through the op. The op itself was interesting, planned to take up to 6 hours. Outside the theatre my surgeon mentioned they had detected a large stone in my gall bladder and as it would be in their surgical field, would I like to have that taken out too? It seemed like a good idea at the time so I said yes. Once I saw the scar I realised EVERYTHING abdominal was in their surgical field, the scar goes from the top to the very bottom of my abdomen - 72 staples in all and 8 lengths of suture material so my surgeon told me later! I was wheeled in wide awake so had a nice chat to the team and wished them the best of luck then I was out to it. Apparently, I was 'laid out like a textbook' so instead of struggling to find renal blood vessels and the lymph nodes they planned to remove, it all happened in 2 hours, not 6. Gave my poor partner a terrible fright when the call from the surgeon came so soon, he immediately thought I had died or they had given up! The surgeon himself was very excited and happy that I had come through so very well. I was in Wesley hospital 3 weeks, with the gall bladder removal making for a miserable second week when I was so nauseous I couldn't eat or even stand the sight of food on TV. It was first thought to be a reaction to meds so didn't get treated as a bilious problem for a few days. Once on the right though ghastly tasting meds, I improved rapidly. Both doctors and nurses were wonderful and I am so grateful to them all. The hospital physios were a bit gung ho and could do with putting themselves in the patient's shoes more often. On the day I had 13 bouts of diarrhoea before lunch, struggling each time to haul myself out of bed to the toilet, I really did NOT need to go for a walk round the ward! Afterwards I gave the head nurse a fright when, back in the toilet yet again, my back gave out and I fell forward, narrowly missing the basin with my head. He issued orders that calmed the physios down a bit so once I showed them I could climb the 4 steps necessary to get into our dwelling, I was allowed to come home. Phew! The 2-hour drive was hell though ... lots of empty room in the abdomen allowed everything to slosh around ... every bump and corner was painful and made my head swim. I was well over it when we still had 60k more to go but we made it. I couldn't have got through this all without my amazing partner. He was already house husband supporting me to work full time (I was 59) but now he took on full time carer and nurse roles as well. I needed a LOT of help with dressing, toileting, bathing ... all the necessary life activities. My wound was also open around the belly button ... we were warned it would be so for 3 months, but it actually took 5 months to heal completely. My partner became wound care nurse, a very messy business which made even me (the biologist!) squeamish. I am immensely proud of him. My GP was great, I saw him weekly without cost to me, and the nurses there helped with wound care and some dressings, though buying special wound care products still proved a major expense. My oncologist started me on some biological treatment to deal with cancer cells in the lymph nodes they couldn't remove. Ordinarily this has livable-with side effects and patients stay on the drug but despite a very positive attitude, I had side effects comparable to the worst of chemo. Painful mouth, horrid taste (plastic, metal and then permanent vomit taste), sore watery blurry eyes, were some of the worst effects, and I was sizing up wigs when the specialist stopped the drug as my liver enzymes were out of control. I was a bit worried the cancer would come back, as a scan showed some nodes had shrunk but others were still prominent but the drug was now doing more harm than good. I had no desire to die of liver failure instead of kidney cancer and after about a week off the drug I began feeling so much better that I then started hoping I wouldn't have to go back on it any time soon. I began to cautiously anticipate seeing Christmas. Christmas came and went though I was struggling with my right hip - all the meds had aggravated it and though due for replacement, such surgery is no longer an option. With one kidney, anti-inflammatories and most painkillers are off limits too. So it took a while for physio to help settle it down. I began to put into action a plan I had hatched in those dark days in hospital ... a big celebration if I made it to my 60th at the beginning of June! Well, I am pleased to say the party was just last weekend and it was awesome! People came from far and wide, their generosity knows no bounds. My GP and his wife came and stayed for the whole time, really enjoying meeting people and all the live music from me, my partner, my Uni group and the community choir to which I belong. It was so great to have him there and for him to see me as someone beyond a patient, as a whole human being. He got a bit embarrassed when I thanked him for saving my life but without his attention to detail, and speed of response, I would have died as I wouldn't have got to the surgeon in time. I was told that even two weeks later would have made the op unlikely. That's cutting it close! My specialists were invited but maybe the 2-hour journey each way was too much to ask. I wish they'd come though. A recent scan showed incredible results ... the remaining lymph nodes have all shrunk back to normal size and I read the words "No signs of metastatic disease noted" with awe. It's as close to a cure as can be but, once a cancer patient, always a cancer patient. I will have ongoing scans and still realise I may need to go back on those nasty meds one day. Hopefully not for a very long time, I am aiming for my 10-year award (after 3.5 years in the job!). During this period, my 3-year probation ended, and while I was fairly sure my illness wouldn't lose me my job, it was still a relief to receive the letter confirming I was now full time and continuing. It has allowed my partner and I to finally begin the process to buy a house of our own. If all goes to plan, we will be moving in the anniversary week of my diagnosis and prognosis! What a difference a year makes! What does it mean to me as an academic? I am technically early career as I did my PhD finally in my 50s, but I am not carving out a career as Martin is. I love what I do though, and want to keep doing it. On prognosis, my first academic thought was "I can't die yet, I've far too much to do!" and then "I want to turn my PhD into a book first!" I've had offers to do that and it really needs to be done. I'm involved in other very promising research in science education and that needs more writing up as well. I have a relatively new doctoral student and I want to see her graduate. There were new courses I was looking forward to writing. So many things to live for academically as well as in everyday life. Yes, I confronted mortality on many occasions and yes, my thoughts did turn to what legacy I would leave. I've had a long career of teaching at school and Universities and I am aware that I have touched many lives directly and indirectly. One of my own former education students is our Faculty Executive Dean! So I am fairly content with my teaching legacy, but more aware than ever that research is only of use if you get it out to a wider audience. I have published some papers but need to do more. Yet finding writing time hasn't got any easier! I am now daring to plan for study leave next year ... how amazing to look that far into the future with some degree of confidence! My University (University of Southern Queensland) was amazingly supportive. HR was fantastic, sorted out leave and pay and coped with my working variable hours through my long recovery to the end of the year. I only had to submit a fortnightly time sheet and it was done. My HoS was also wonderfully supportive and only ever concerned about my health and my not doing too much. Our VC knows all her staff and has also been very supportive, and it was great that she carved out time to spend Sunday afternoon at my party, singing along and clearly enjoying the company. I couldn't have asked for better support from anyone. Colleagues were awesome, picking up work as needed, keeping me in the loop (or I'd have gone mad) but not burdening me, visiting and keeping in touch. My singing group and the community choir to which I belong were also wonderful networks of love and care which continue. Now I am back but not fully fit, cups of tea materialise during breaks, brought by very kind and willing hands. I feel very humbled by it all and definitely take none of it for granted. I don't take life for granted now either. After facing the prospect of only weeks to live ... then thinking months ... getting to milestones like Christmas ... then cautiously hoping for another year ... to now, when my new nephrologist who will look after my remaining left kidney blithely said "Oh it should be 20-30 years before we have to worry about dialysis!" ... it has been an incredible ride in the space of less than a year. I still love life, I still love my academic work, I love singing, and I love the people who surround me, but at my core, is now a different perspective. I still work overlong hours - what academic doesn't! - but I keep note of them now and am trying to reclaim them when I can - like this week, when I have had interstate friends staying to attend my birthday. I am more aware of how I choose to spend my hours, and while I still do some frivolous things, watch TV etc, I am more mindful of doing so and of making choices. I'm still hooked on colouring in, but I am mindful that I do it to relax and exercise my creative brain and that these are hours spent wisely in terms of my whole health and wellbeing. It sounds bizarre, but given the amazing outcome, I do not regret having had this experience of kidney cancer. At least it's an organ of which I have a spare (which is doing 80% of the work of two, I am ridiculously proud of my left kidney!), and with the incidence of cancer in the population, strangely, I think I have got off relatively lightly. In all my recovery period once out of hospital, I only had one really BAD day when I felt overwhelmingly sorry for myself. It didn't last, I am at my core, a positive person and I am grateful for that. If I had not been so, it would have been a far harder journey, and I feel for those who don't have that wellspring of positivity inside them. Everyone will face such a journey uniquely, yet, there are also commonalities. If I had to offer one piece of advice it would be this: Allow your friends to be the true friends they want to be. By that I mean, keep them in the loop as they cannot support what they don't know about, accept their kindnesses graciously, bask in the warmth of their love, and let yourself be lifted up. There are so many blessings out there for you. I hope that by sharing this 3rd story here, others facing serious illness or knowing someone else who is, will be lifted up too.
Thank you for sharing, although not working in academia, the anxiety about work, identity and legacy sounds familiar. I was diagnosed with breast cancer in August 2017 within 4 weeks of being married. What appears to underpin all the stories of recovery is the love, warmth, good wishes and practical offers of support from family and friends, work colleagues and neighbours. I too have been overwhelmed by the generosity and kindness from people. It really does make a difference to ones recovery!