In which I run aground

It’s been a long winter, and the past academic term seemed to stretch on forever, a blur of stress and deadlines punctuated by good news and bad. My lab got another paper accepted, and my outline-stage grant was shortlisted. But then I had to complete the full grant application alongside a hefty stretch of intensive teaching and supervising a team of researchers, while juggling a handful of manuscripts and some quite distressing issues in my life. As a result, I hit Easter break like a clapped-out car running out of fuel and rolling to a stop on the side of a long, deserted roadway.

This isn’t anything unusual: holidays for me often feel more like a period of convalescence – especially the first few days of it. This sense is compounded by the usual guilt that gathers every time I am not doing anything, an insistent voice in my ear scolding me for not writing, weeding the garden or embarking upon some long-awaited DIY project. Instead, I tend to sit in the garden with a cup of coffee and stare into space, wishing I were asleep instead. If I’m lucky, I might manage a few handwritten lines in my journal.

So here I am, laptop resting on the marble-topped table at the back of my garden, listening to the creek spilling into the pond, and the urgent springtime songs of robins, blackbirds, tits and finches. Cherry blossoms drift downward and speckle the surface of the water, which reflects back trees and sky. I’m past the convalescence stage of this break, but I still feel like I haven’t had a proper sleep since the 1980s. My body aches, the consequence of pounding the concrete pavements five days a week over the past four months as I commuted from Kent to London and transited between campuses, going about my frantic academic business, prolonged by the on-foot school run. Sometimes I fear I’m getting too old to physically keep up the pace. When I fantasize about quitting academia, it’s not to take up some high-flying alternative career, but to become a gardener or a park ranger, somewhere far away from the city where I can work with my hands and breathe the fresh air.

I’m not quite ready to throw in the towel, of course. If I can get enough momentum over the next two years to ensure continuous research funding (“escape velocity”, a former colleague used to call it), I’ll have a fighting chance. Diversification is probably key, even though that’s the last thing I want. But it’s so hard to convince anyone that a usually-not-life-threatening bacterial disease which is most problematic in older women, and which already has a cure traditionally viewed as “effective”, should be funded at all. Grant reviewers tend to point out that there are far bigger problems out there, such as cardiovascular diseases and diabetes, and that antibiotics are perfectly serviceable, so why dabble with new therapies?

This gap in understanding the reality behind the myth means more precious lines of the application devoted to explaining how chronic and recurring urinary infection are far more serious than people think – which then means less space to devote to the plan of attack. Leading, in turn, to criticisms about lack of experimental detail. Achieving that balancing act has been the product of nearly eight years of grantsmanship refinement, and time will tell whether I’m finally getting it right. The cause is so very important – thinking about the plight of the patients, and how close we are to making a difference, is sometimes the only thing that keeps me going.

So, five more days to forget about work, lick my wounds, catch up on my sleep and spend precious time with my family. Unusually, the weather has actually cooperated this year, with summery sun arriving just in time for the hank holiday weekend. So I’d better sign off now – I’ve got goosegrass to pull up and a son and husband to cuddle close.

About Jennifer Rohn

Scientist, novelist, rock chick
This entry was posted in Academia, Domestic bliss, Gardening, science funding, Staring into the abyss, The ageing process, Work/life balance. Bookmark the permalink.

11 Responses to In which I run aground

  1. Grace says:

    I just wanted to say, as a 30 year old chronic UTI patient who’s career in academia has had to be put on hold/somewhat abandoned due to this condition, thank you for your persistence and hard work. Most of us with this infection know how hard it can be to get a doctor to listen to you and take you seriously, so I can empathise with how frustrating it must be to try to educate funders whilst also trying to get them to see the huge value your team’s work would bring.

    We’re all pulling for you, I hope you can relax and have a well deserved rest with your family.

  2. Grace, thank you so much for your kind words, and I’m so sorry to hear of your sufferings. These little crises in confidence always seem to hit me when I step off the roller coaster for a spell. When I get back on next week, I hope to be renewed and rejuvenated. 🙂

  3. Jo says:

    Hi Jenny, I’m right at the beginning of treatment with the Professor’s team and I, like the other poster, am in my early thirties. I also have had to put my counselling training on hold and I am so thankful for your work and amazing research. I hope to have the opportunity to have a family one day if I want to, once I’m back to normal life, hopefully that’s not too far away. I hope you are able to have a restful break over Easter weekend. Jo xxx

  4. Laura DUBINER says:

    Dear Jenny

    You are an absolute star for pressing this cause – an ‘orphan’ and ‘unsexy’ illness which so few people understand devastates lives for millions. Thank god for people like you. You are one of the heroes of our time. After years of suffering the only thing that keeps me going is the hope of new treatments. If you can crack this illness you will give back the lives to millions of desperate people and their families. Thank you

  5. Thank you for your kind words, Jo and Laura. I’m just a small part of a big team effort, please remember…but I’m excited by our new treatment ideas and I have everything crossed that they will work.

  6. Karen says:

    Thank you for all you are doing. I have had a chronic UTI for six years. I’m so grateful there are people out there fighting for our patient group. I work for a charity trying to get research funding for facial palsy, another condition that is not taken very seriously, so I completely understand the frustration and the exhaustion, that feeling of hitting your head against a brick wall as no one seems to want to listen. The blood, sweat and tears that go into a funding application only for it to be rejected. I understand what you mean about having to explain the condition before you even begin and that taking up precious space on the application form, yet grant writing experts tell you to talk about impact and not the condition. So difficult to get that balance right when people don’t understand it. The help I have received for my chronic UTI and the improvements in my quality of life in recent years have enabled me to do my job, helping people with other health issues. I also felt completely burnt out in recent months. Trying to help others who you know are suffering can feel like such a heavy weight on your shoulders. I have taken a step back though and am talking to someone new about strategy, just a couple of days spent with them has really lifted the weight off my shoulders. You have to look after you first though, because that will help others best in the long run. So please take some time for you, rest up and know you are not alone with these frustrations. The consultants I work with voice similar frustrations about difficulties getting funding in recent years. Sign of the times I think. Thank you, take a well deserved rest. Just the fact that you and everyone else involved are trying to help us makes a huge difference.

  7. Valerie says:

    I am on treatment at the LUTs and am so much better now that I can work and feel confident to make plans now as well. The treatment has given me back my life when all else had failed for many years as began to lose all hope and was in chronic pain. Am now 90% better and am very grateful to yourself and all who work so hard behind the scenes doing research as well as front line staff. This research is so important to so many for the future as well. I wish you well with all that you do and wish too that it was made easier for you. Wish we could do something to help you.

  8. Laura says:

    I am also another long term sufferer of EMBEDDED uti infections. I can’t believe how dreadful traditional treatment from GPs and urologists is. Thank god for Prof Malone who has helped me cope and return to work and life.
    Huge thanks to you for your persistence and efforts! There’s a lot of us!

  9. Rebecca says:

    There are many children and young adults with chronic UTI’s which test negative, who are unable to receive proper treatment . My daughter first got symptoms aged 11 and they got progressively worse and by 14 the discomfort was unbearable for her and affecting her quality of life.
    Thankfully she was seen by Professor Malone-Lee and within 11 months she was infection and symptom free. We have learnt so much from the Professor and others about this illness and there are children waiting to be treated who have no access to LUTS clinic. The work you and your colleagues do is pioneering and gives countless others renewed hope and respect and trust in medical world, after witnessing the most extraordinary ignorance and lack of good common sense from other medical pathways. Thank you so much . 🙂 So heartning.

  10. Helen says:

    There are so many of us Jenny..those at LUTS are merely the tip of the iceberg. New treatments are desperately needed. Thank you and if there is anything we can do to help raise the profile to help the search for funding, please let us know.

  11. Helen Eager says:

    A big thank you Jenny for your commitment to this research. I hope the way ahead involves less stress and burnout. I’m from Australia and I’ve had chronic UTI for 35 years – only recently diagnosed and being treated. I can vouch for the fact that it is a life changing and severely under diagnosed condition. I really appreciate the work of you and others in finding answers!

    All best wishes. H

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