Paul Tomkins - Author

Author of the novel The Girl on the Pier

A Life of Loves and Losses With Chronic Illness 

I am writing this within an hour of saying a final, teary goodbye my dog, Bryn, and doing that dreaded walk out of the vets – the one with the folded-up lead and the collar in the hand.

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Bryn, the day I got him.

(Note: I started this a week ago, but have held it back, and made edits and additions, to include it in #literaryspoons. But most of it was written upon returning from the vets.)

I ‘rescued’ Bryn in 2014, a week after the 14-year-old collie I’d had since a puppy died, leaving me in an empty house without my long-time companion.

I got Jake, my previous dog, in 2000, just before getting married, and shortly after I’d been diagnosed with M.E.. The medical advice I’d been given was to try to walk daily, so a dog made sense. I’d had to give up my career as a designer at The Guardian in early 2000, and I’d also had to give up playing football in 1999 (the time of my diagnosis), while still in my twenties, having been a semi-pro just a couple of years earlier. I haven’t played any sport in nearly two decades, when that’s what I did virtually every day for the previous two decades. (Every break and lunchtime at school and college. After school with mates. Training and playing with teams, and partaking in works’ five-a-sides.)

At that stage – back in ’99 – I would have terrible symptoms after playing a game: the need to immediately sleep for hours; followed by days of headaches, heavy-leggedness, muscle pain, insomnia and IBS until, half a week later, I was able to train, and a few days after that, play another game, if hyped-up on Red Bull. It was strange, as I was physically fit – brilliantly “conditioned” – but also falling apart.

At that stage I was increasingly picking up recurrent upper respiratory infections or viruses, and having my tonsils out aged 25 only helped for a while. Either way, for most of the 1990s I was on antibiotics every other week.

By the time we got a puppy in 2000 I was still able to walk him 2-3 miles a day, at a steady pace. After giving up work and sport, as well as alcohol and various foods, I felt ‘okay’. As long as I avoided stress or overexertion I could keep on an even keel, physically, but I was also in denial about the depression that came with the loss of my health and my male identity. I was no longer the two things I’d defined myself as: a good footballer, and a good designer. I felt lost.

I was also no longer a breadwinner, an issue that men struggle with, whether or not their partners work. Half of losing your career is the love of your job and your productivity; the other half is that you are no longer a financial contributor to society or your relationship. My sense is that a woman may help support a man, but that for most it’s subconsciously ‘unappealing’, in the way that men have subconscious issues about what they want or expect from women (all of which is discussed brilliantly in Brené Brown’s work on the topic of shame, in her various books, and the social pressures both sexes put themselves and each other under. View her Ted Talks here.). Men are supposed to be physically strong and active – evolutionarily there’s nothing appealing to women about unproductive weaklings, even if some women are willing to help take care of them (and women are generally more compassionate than men).

It also doesn’t help either party in the relationship if the man gets depressed and becomes a pain in the arse.

I was no longer a socialiser, out with mates having a few beers, even though I was never much of a drinker after I left college. (Some raucous drunkenness may have occurred before then.) I no longer had the community of like-minded workers around me, which had been the best part of working at The Guardian. I no longer had the kudos of praise and unexpected pay rises, or a sense of purpose.

Gradually, without being aware, I slipped into a bad state mentally, but only after the initial relief of being freed from the rat-race; as well as freeing my body from the overexertion it was shutting down from, and which was making me feel so ill that I’d sometimes cry on a Sunday night, unable to foresee how I’d find the energy for the next day, and unnerved by what my body was doing.

I’d had the symptoms of M.E. since at least 1991 (first signs of post-exertional malaise, aka PEM, plus the first issues of insomnia, IBS and visual deterioration on bad days), but they were usually very mild if I was taking life easy.

But with every passing year it became obvious that something deeper was going on, and I couldn’t keep pushing myself past my limits. I needed caffeine to get going, and sleeping pills to get to sleep – because the exhaustion was not tiredness (oh sweet, embracing tiredness that comes to help with peaceful sleep!) but a horrible fatigue that was highly uncomfortable, restless and at times painful. I lived and slept an artificial life.

My marriage ended in 2002, half a year after our wonderful son was born; the stress had got too much. I’d gone back to work just after his birth, to a new job in Leicester (where my wife lived; it made sense to live there too), and after a couple of months I was shattered; I moved to part-time role within the same low-key council office, and a couple of months later I was once again shattered.

In those early months I spent a lot of time fretting about the things I would be unable to do with my son, and my fear – given that my health seemed to continually worsen – that I’d be bed-bound within a couple of years and miss out on his life.

I’m writing this fourteen years on, and I’m still not bed-bound, but I am increasingly housebound. I never did get to kick a ball around with him when he was young, and as such he doesn’t share my interest in sport. And while the severity of my illness has yet to peak in the manner feared, it’s depressing to think that I’m still ill, and still more ill than I was back then.

Every week since getting divorced I’ve had my son two and a half days a week, and most of my energy has gone into those days – Saturdays, Wednesdays and part of Thursdays. The rhythms of my energy have had to ebb and flow to that pattern.

I spent the first couple of years after the divorce on incapacity benefit, acutely aware that I could not work for anyone else, and that even working for myself  – as I tried after leaving The Guardian in 2000 up until my son was born in 2002 – involved the pressure of dealing with other people’s demands and deadlines. Once our son was born, working from home also became too chaotic.

(Within a few years I’d no longer qualify for benefits anyway. I applied again several years later, when my health dipped, but passed a test where I could touch my toes, point to the ceiling and walk 400 yards. Seriously.)

Then, in 2005 I published my first football book, which I’d been encouraged to write by my readers after years blogging on the game. Going to the football with my mates had been my Saturday (and even midweek) regime both before and after my stint as a semi-pro, and playing football on a Sunday had been another social outlet. But by 2005 I rarely made it to watch a game anymore (partly due to my health, partly due to looking after my son on a Saturday), and I certainly couldn’t play; so writing was something that was relatively easy to do whilst chronically ill.

But books aren’t very profitable unless you are a bestseller; even selling 15,000, as I did with my first of what is now a dozen football books (helped by fortunate timing with regard to subject matter 11 years ago), saw me barely match what I made on benefits, which in itself did not fully cover my rent and my food and utility bills (my parents had to top it up).

In the coming years I wrote all those other football books, most with a diminishing return; and with a lot of stress involved in trying to pay the bills, especially once sales, after the first month or two, became sporadic and unpredictable. I turned down a lot of promotional opportunities, including interviews on sports TV, because I knew it would compromise my health; and there was no way I could work as a writer for anyone else, given the unpredictability of my health (and the way that the fatigue becomes cumulative, with the myriad other symptoms making it that much harder).

I only started to make a proper living as a writer in 2009 when launching my subscription-based Liverpool FC website (The Tomkins Times, aka TTT), with the income finally both sufficient and spread evenly over the year. For the first time, I was even able to start saving, in the hope of one day getting a mortgage.

As recently as 2011 I would say that, my health aside, everything was going brilliantly as middle-age approached. TTT was doing far better than expected, and I’d just rented a lovely ex-farmhouse with my girlfriend of four years. She had fairly severe M.E. (and before that, genuinely severe M.E.), and we’d met via a very small M.E. forum. My son was still at primary school; my dog was still as lively as a puppy; and my parents were doing well – and, like me, had moved up to the midlands from London. My partner and I were living right on the edge of the countryside, in a house we could never afford to buy but where the rent was reasonable, and with my son with us for part of the week, we made for a great little (modern) family unit.

Since then, however, it’s been one loss after another. Recently I discovered a book by Judith Viorst called Necessary Losses, and it has helped me to realise how much time we spent avoiding this inevitable fact of life.

We all lose people (and things, living or otherwise) from our lives, but the timing and severity differs. I feel like I’ve had a bad five years in terms of loss, but I also guess that the longer you live the more there is to lose. After all, few people live to be a hundred and still have living parents. Some people die young; but everyone else doesn’t escape it forever. You will experience loss, because it’s a fact of life. Five years ago I had no experience of cancer, and since then I’ve lost my dad and two dogs to it.

For me, it began with the loss of my health, which led to the loss of most of my social life and most of my physical powers. Instead of being strong, I was clearly weak.

By 2011 I had got used to that, even if, on some level, it still wasn’t fully processed. But then came the loss of my dad, who’d been diagnosed with adenocarcinoma (basically, cancer that spreads everywhere through the glands) in 2009, but despite being 82, was still going strong two years later. Somehow it just didn’t seem to do very much, at least until the summer of 2011.

Then he suddenly went downhill, but even then it was dragged out over six months – losing weight, losing strength, before eventually losing his faculties – and he died that Christmas, after five days in a coma.

By then I had taken on people to help with TTT, which obviously made it less profitable to me; but  they were good people with their own illnesses (or were looking after a chronically ill partner), and I wanted to make sure that those paying to subscribe got extra content rather than just relying on my input. I didn’t realise that I was swapping the pressure of having to produce all the content for the pressure of having to provide people with their sole form of income; neither of which is helpful in terms of my illness, but there is no alternative.

Still, I threw myself into my work upon my dad’s death, which had brought up a lot of childhood memories (happy an sad) and hit me with the idea of my own mortality, as I’d just turned 40.

I guess I came to understand the concept of a mid-life crisis, in how you can find yourself marooned as if in a rowboat on the vast ocean – no sign of where you came from, it’s so distant from the shore you left behind, and no sign of where you’re going. (As an aside, I remember seeing this metaphor used for writing a book, in how you’ve lost the initial burst of energy, but when you don’t yet have the reassurance of the end in sight. I suppose it applies to any task that takes a lot of time and effort. Like life, of course.)

My health continued to suffer, and then my relationship began to suffer too. Stress is like a carbon monoxide leak in that you don’t notice it; it just builds up, and then you’re done for. It made me irritable, and at times unlikeable (to my partner, and certainly to myself). I was getting weaker, and my self-esteem was crashing.

In 2013 we split up – which was devastating – and I used my savings (that I’d been putting aside for our future) to get my first ever mortgage, on a simple house closer to my son. That was my sole priority (not that I’d lived a long way away, but I wanted to be within a short walking distance.)  In the process I found out that my account, a Mr Peter Coles, was a convicted fraudster who hadn’t advised me correctly (here’s a newspaper article I wish I’d read before it was too late) – and that on top of the taxes I’d been paying, I owed almost £30,000 in back-taxes and fines I had no idea I was in any way liable for (and which was money I’d been budgeting with to pay staff). This almost ended my hopes of buying the house, and also almost crippled my business.

As it is, running a business with a chronic illness is many times tougher than it is without one; indeed, everything with a chronic illness is doubly or trebly difficult, if not more so (and in many cases, simply impossible). Entrusting someone who turned out to be a sociopathic liar only made it harder.

And perhaps hardest still is to be in a relationship when you’re both ill, although even just one of you being sick makes for a struggle.

With my football writing now a vocation (which definitely takes some of the fun out of it), I continued to chip away at my first novel, which became my hobby, and the thing about which I remain most proud.

In 2013 I procured an excited agent, who loved the book, but twice she changed her mind on its commercial prospects, and declined to take it to publishers, as much as she herself (and her staff) thought it was great. As the metaphorical lifejacket onto which I was clinging, the timing was awful. (After a year of delay, I later decided to publish it myself, and it has sold over 10,000 copies and been awarded the Kirkus Star. Again, it’s not been very profitable – with the costs incurred I probably broke even – but the other rewards have been great. However, I didn’t know that back in 2013, mind, when my agent first stepped away.)

A few months later, early in 2014, my beloved dog Jake had to be put down in the middle of the night, after a sudden illness led to internal bleeding. My son was by now a teenager, and no one ever explains to you the grieving process of losing the kind of relationship you have with your child when they are younger, before they become more independent (as you’d want, of course – the aim is to help them become normal, capable adults, not keep them in a child-like state for their whole lives. But it still hurts to no longer feel as necessary).

So I got Bryn, a zen-like Collie (who never barked and happily sat by the window looking out at cats) in the spring of 2014, after a week spent mostly alone inside an empty house, the missing heartbeat evident in the total silence and stillness. I’d lost count of the times I’d gone to let Jake out, before realising there was no longer any need to open the backdoor or fill his water bowl. (Within an hour of Bryn dying I had already gone to do that.)

I was told that Bryn, who’d apparently gone from a Welsh farm to a vets, then onto a rescue centre in England, was three years old, although he looked much older; but maybe he’d just been out in the elements a lot. Within a year it was clear he was actually a fairly old dog (I guessed at seven or eight), albeit still sprightly. Turns out he was probably even older when I got him, given that the vet said he was between 10-15 upon his final visit.

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Is that a cat I see before me?

But it suited me that he was very relaxed and, short walks aside, happy to just lay by the front door looking at the neighbour’s cats, or following me around in the hope of a biscuit. Upon his first visit to my mum’s house he sat down for an hour staring at a painting of a cat.

(I tried throwing a ball for him to catch but he just watched as it hit him in the face. I then threw the ball down the garden and he just looked at me, as if to say “what on earth did you do that for?”  Seems you really can’t teach an old dog new tricks.)

Four weeks ago his glands on his neck swelled up almost overnight, and three weeks ago I got the diagnosis of lymphoma. His glands continued to swell, to the point where they were literally apple-sized this morning. With painkillers he seemed okay and retained his appetite, but without them he was listless and disinterested in anything. So the time had come to make the dreaded decision. I wondered if I was doing the right thing, but at the vets he just lay on the floor as they looked him over, as if to say “I’m ready to go”. He didn’t flinch when they put the cannula in, and it was clear he’d had enough.

Losing a pet is tough, as anyone who has been there will know; and many who haven’t may never understand. But when you live alone – as I do, effectively like an old man, but aged 45 – they become your trusted companion. I imagine that most chronically ill people rely on the warmth and unconditional love of a pet, especially in a world that appears to be losing its mind.

And so here I am again, alone in the empty house. (The heating has just clunked, and I thought “Oh, that’s just Bryn sitting down by the radiator”.) Middle-age has been an utter bastard to me so far, with my health continuing to decline ever so slightly, year after year, with the occasional upturn here and there. Life just seems to get harder and harder, and it’s probably not helped by social media, and the plethora of people living apparently perfect lives (which even if you know not to be true, still leave a sense of missing out. If healthy people have FOMO, the chronically ill have FFOMO, complete with an additional F-word).

As noted earlier, I am still not bed-bound – so I still haven’t experienced severe M.E. – but I have less confidence leaving the house for an extended period of time, and although I still drive, I only feel comfortable over shorter distances; anything longer, on the occasional times I’ll go somewhere beyond the midlands, I need to break up with an overnight stop. (In early 2015, during a good spell, I made it all the way to Iceland, for a week, to research my second novel – and even though I had to cancel half of my itinerary once there, and spend three days in a hotel room overlooking the sea rather than seeing the sights, it was worth the pain and the payback. But those levels of moderate energy seem a long way away.)

And of course, I cannot avoid further losses in my life. I’ve lost family, and since just 2014, two beloved pets to death; and in other ways lost careers/jobs, friends, hobbies and most physical abilities beyond walking.

For the most part I still don’t feel in any way beaten by life, and understanding that losses are inevitable is important for some mental stability; I don’t think “why me?” because losses come to us all. I am not unlucky, and bad things do not single me out.

But it can be tough, and gruelling, to keep getting back up, time and again, when lacking energy and when aching all over, and with little to look forward to.

(And in the week since Bryn died I’ve felt the numbing weight of depression – taking away the strong motivation that I’ve had for most of my time with M.E.. I’ve experienced M.E. when happy and sad, buoyant and depressed, and it has caused the same symptoms at all times. So it is definitely not depression, but depression can add a layer on top. I started writing this piece with a sense of grief, and a need for catharsis, which was motivating; but since then I’m really having to force myself to do my daily chores. Hopefully this is just stage four of the Kübler-Ross model on the five stages of grief. Of course, the state of world politics is also pretty god-damned depressing, and being chronically ill is pretty god-damned depressing.)

At this point, after all of the losses – of people, pets, and of my physical health – I’m definitely in the mood for some gains.

3 Comments

  1. Thanks for sharing. As a mostly OK (not sure it is ever “former”) ME sufferer and an LFC fan, I’ve always enjoyed your writing and your outlook. Guess “enjoyed” might not be the right word in response to this particular piece–but you are being open and human and that is brave. One early maxim that I used to cling to was that with ME you have to accept that you are a human being, not a human doing. So keep on being.

  2. What a fantastic piece of writing. Being married to a person suffering from cfs and other problems like fibromyalgia and most likely adhd and ptsd I can if not understand, at least relate to what your saying. It helps me to understand things about my self, my wife and our relation. Thanks a lot for what you’re sharing.
    My dog/best friend from nine years back is also suffering from cancer by the way. I too fear the walk out from the vets. Will probably leave the leash somewhere in there. Can’t bring myself to take it back home.

  3. Thank you for sharing this, Paul. Having enjoyed your work over several years now and become friends (at least internet friends!), my admiration for you as a person only ever grows. As someone else who suffers from chronic illness (Ankylosing spondylitis or AS) I can completely relate to every thing you speak of. My symptoms are different, but since I was 21 I have had to live with moderate to severe pain on a daily basis. And this being after I was an incredibly athletic kid. Football being my main sport, by also track, skateboarding, surfing, rollar blading, and just general activity. I can’t play football anymore and while I try to keep fit, there’s just a lot I can no longer do. It can be extremely depressing at times, but I keep fighting, trying to find ways to feel better. It’s all we can do, is try to manage as best we can.

    Just wanted to let you know as difficult as it is, you aren’t alone. And you’re an inspiration both as a writer and a person. It’s meant so much how you’ve always been so encouraging to me as a writer. The last couple years, and this one in particular have been very difficult for me personally with lots of that lovely old grieving, sadness, depression, hopelessness, and pain sprinkled with the occasional happy moments. Most recently I’ve had my niece to provide that unconditional love and friendship that only babies/children know how to provide. But reading your story helps remind me that I’m not alone either. So thank you for being brave and sharing. Don’t give up. Nothing is impossible.

    Xo

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