The Elephant in the Room

Meet Emma – diagnosed with Crohn’s at age 3 

I’ve always liked the expression the elephant in the room, but I’ve never been curious enough to explore its origins before now. Its first globally published use came in 1959, when a journalist wrote a very literal statement in the New York Times, comparing the funding of education with the hypothetical notion of finding an elephant in one’s living room. In other words, the problem had become so great that it simply couldn’t be ignored. It is now a term that is thrown around and understood with ease. Nobody is ever likely to be found courting the awkwardness of an encounter with the elephant in anyone’s room.

So forgive me as I throw convention out of the window (when would I do anything other than that with convention?) and introduce the elephant in my room on the world wide web in a bid to try and befriend it.

As you know, this blog has been designed as a place for me to share my thoughts, ideas, worries, successes, dramas, hiccups, triumphs and fears; it is meant to be an open window into life with Inflammatory Bowel Disease. It would be fair to say, there are currently a lot more lows than highs on the rollercoaster of life, as I continue to do battle with my ever decreasing weight and the constant pain and fatigue that comes with relentlessly active disease. I said, when I launched the site, that this new spirit of sharing would mark an opportunely-timed change in my past behaviour. I said that, because I had just been dealt a somewhat heavy blow by my consultant about the year to come. I became all too aware that I would very soon need to be more open in order to maintain any degree of normality.

As I write this particular blog, I am coming to terms with the fact that I am starting 2017 in a situation in which I never imagined I would find myself. I have been encouraged, not for the first time, to take a break from life and give myself some time out. Yet again, that course of action is absolutely out of the question. Last Wednesday, when most people were still riding the wave of humbug season celebrations, we were at the Bradford Royal Infirmary, riding an altogether less pleasant wave of our own. That was the day I had a naso-gastric tube fitted.

For me, one of the most terrifying thoughts of all, is being seen as an ill person. I have spent my entire life challenging that perception, and presenting a persona to the world of somebody that can cope with anything. Whatever difficulties I was facing at any given time, I have always made it my aim to conceal them from the world; always done my best to carry on regardless. With that in mind, you can imagine how frightening a prospect this has been for me. It was first mentioned some months ago, when my weight began to move steadily in the wrong direction. It was met with cast-iron certainty that it would not be the route I would ever take. The notion of brandishing a visible indicator of my status as a patient 24/7 did not even bear thinking about. Since then, I have tripled my efforts to gain weight, existing on a diet made up of fat, carbs, fat, fat, sugar, fat and more fat. To no avail. The numbers on the scales have continued to go down, and the inches to melt away.

I have never had a moment quite as sobering as at the beginning of December 2016, in my consultant’s examination room. There are no words to describe how it felt to hear her explain to us the ways in which I am ‘failing to thrive…slipping away…a waif…a life that is in desperate need of being saved.’ I have had emergency hospital admissions for acute flare-ups before, and I have held my hand over the knocker on death’s door a couple of times, but this is different. This is the culmination of five years of constant chronic activity. This is my reality and illness is my normality, so it is easy to lose perspective in terms of how ill I have become.

When I wear my mask of positivity, I am not just fooling the rest of the world; I am fooling myself as well.

Needless to say, the run-up to the holidays was far from joyous in our house. With the passing of each day, we came a step closer to the arrival of D-Day. There were phone calls imparting information which I struggled to take in, and deliveries of equipment that LovelyMan shrouded in a sheet in our spare room so I could avoid looking at it all. I felt more and more nervous about how I would cope, how it would feel, how it would look, how others would see me, how I would see myself. I have had an NG tube before, as a drainage vehicle when I was awaiting emergency surgery. That was a horrendous experience, and my only frame of reference for what was looming on the horizon, so it did nothing to ease my terror. Rationally, I knew the anticipation would be worse than the reality, as I think is always the way. However, try as I might, I could not separate my cognitive understanding of events to come, from my emotional response to them.

Knowing that all food would soon be banished from my diet, LovelyMan and mum made it their mission to make and bake everything on my edible bucket list. We were certainly not short of bread products during December, and I had more than my fair share of tasty treats. I even managed homemade spelt doughnuts on the first night of Chanukah, as per tradition from our early dating days. We dined out as much as possible, splurged on food when I had a craving and tried to make the month as pleasurable as we could. Yet the cloud has been ever-present.

If I needed confirmation that this really was the necessary step to take, it came when I stood on the scales in the dietician’s prep room on the day in question. Convinced I would weigh in superficially heavier that morning, due to a combination of constipation, the previous three days’ indulgences and a desperate need to empty my bladder (sorry if that’s too much information for anyone) I got a shock when the digital screen settled on its answer. 34 kilos. That’s just under 5 stone 5, for anyone who needs the conversion. I shudder to think what number might have come up had I nipped to the ladies’ first.

So there we were. No way out, no turning back, no choice to opt out. I won’t describe the feeling of the tube going in because I am sure most of you don’t wish to know. I will simply say that it was almost as unpleasant as I had remembered it being. Thankfully, the feeding tubes are a great deal smaller in diameter than the drainage tubes from my memory. The wire used to guide the tube into place was probably the most uncomfortable part, as it made the tube press directly on my gag reflex, prompting lots and lots of retching. Typically, I had to be non textbook, making mine a lengthy procedure which had to be followed by an x-ray to ensure the tube hadn’t deviated from the set path and settled in my lungs instead of my stomach. It hadn’t. I am still certain I would have known about it if it had taken such a wrong turn, but the team needed to be sure.
With that, we were ready to roll. The rest of the day was something of a blur that I seemed to be watching from a distance, and the only word I can use to describe it, is surreal. We had a visit from a Homeward nurse, who stood in our bedroom like a Tim Burton caricature of a fifties Avon lady, asking if we wanted to ‘have a play’ with the new piece of hospital kit on my bedside table. It was just bizarre. I felt sure I would wake up from the nightmare at any moment, and go on with my day as I always did.

The original plan had been overnight feeding, but when we learned that I would need to sleep in an upright position, and that we would have to get up to change the feed bottle in the middle of the night, we ruled this one out. We have to be allowed to make the best of a bad situation, and to make this fit comfortably into our lives. The latter is a work in progress, which feels like an impossibility at present. I seem to take three steps forwards and then about sixteen back. Emotionally I am all over the place: one day regaining my usual positivity, the next feeling like everything is too hard to cope with. On my nearest and dearest’s advice, I am endeavouring to be kinder to myself and allow myself the breathing space to struggle while I adjust without the expectation that it will all fall into place instantly. With that, I am trying to see every little milestone – the first feed, first outing, first syringe-feed – as a victory in itself, however small. While still in the introductory phase, the feeds have to be gradually built up to give my body the best chance of accepting the nutrients from them. As a result, feeds are painfully slow for the time being, and I feel like I am spending far too much time chained to my squeaking machine.

We are now on day 5 and, though I still haven’t awoken from the nightmare, I am already well-versed in some of the routines and rituals I have to incorporate into my day, and I no longer feel like I have a lump of food stuck in my throat. It never ceases to amaze me how quickly I adapt and become institutionalised whenever hospital admission comes around; I suppose this is an extension of the same.

What I am finding harder to attune to than I anticipated, is the total abstention from food of any kind. I thought that would be the easiest bit for me, given that I am so used to going full days with too much pain or nausea to eat. I am no stranger to restricted food plans and forbidden treats, but this is in a league of its own. It is easy to overlook how essential a role food plays in our day-to-day existence. Mealtimes are no longer enjoyable for either myself or LovelyMan. He has the choice of eating completely alone, or feeling uncomfortable because he can eat and I can only watch. I have the option of isolating myself in another room, or taking some delight from the smells and sight of food by joining him at the table. Yet knowing how much of LovelyMan’s pleasure has been eradicated by my situation, this tends to leave me feeling guilty. This is something we will, of course, get used to over time; we will have to.

So which bits are notably less tricky? I can check the PH levels in my stomach with ease, recognising what colours indicate what levels of acidity almost before I hold the strip against the chart. I can set my machine up without thinking about how, and know to syringe a 60ml water flush following every feed. I have stopped leaving the little backpack on the seat next to me when I stand up to do anything, and am becoming accustomed to having it on my back for anything other than sitting. I no longer flinch at the sensation of cold fluid passing through my throat within the casing of the tube, and I am not frightened to blow my nose because of the foreign body protruding from it. I know the exact spot on the bathroom floor to set the bag down so I can go to the toilet and then wash my hands without having to touch it in between. I have almost perfected transferring the sticky feed from carton to bottle without spillage, and positioning the tube extensions without disturbing the vacuum (after a couple of slip-ups that’s a relatively quick lesson) and I don’t gag at the smell of the feed anymore. I am still not a fan of the tape on my face, and I have yet to find the best way of securing the tube, but I am rapidly getting used to my reflection.

My sister (the middle one) calls it my nod to post modern punk glamour – tube instead of chain and my uncle thinks I should dangle charms from it. These reactions are easy to receive, shrinking my elephant to something pocket-sized, manageable and even laughable. What I dread, are the sympathetic head tilts or the stares and whispers I am anticipating once work starts again and I am forced into the community once more. Compassion, understanding and empathy I gratefully accept, and my friends and family have given me that in abundance. Pity, however, is something I have never wanted. I don’t want to be seen as Poor Emma because of this recent twist in my plot. I haven’t ceased to be me because things are tough. Things are always tough. The only difference is that I can’t hide it at the moment.

That brings me back to the elephant. I mentioned its debut in print as a metaphor for something problematic that can’t be avoided, but it actually first came to light a great deal earlier. In the 1814 fable titled The Inquisitive Man, Ivan Andreevich Krylov tells the tale of a man recounting all manner of a museum’s wonders, but failing to spot an elephant in amongst the exhibits. In our modern use of the phrase, the elephant represents an obvious problem of which everybody is aware, yet which nobody addresses because it would be too confronting, taboo or difficult to do so. How does that fit with the original fable in which the gentleman notices everything but the enormous tusked mammal in the corner?

I take the fable to be referring to looking beyond the obvious, and seeing things that might perhaps otherwise be concealed by the elephant. The man was so enamoured by what he saw in the museum that day, that he spoke about the richness and reverence of nature in describing insects no bigger than the head of a pin without even the vaguest mention of the elephant. It may have been big, but it was of no consequence to him because he had already been charmed by the rest.

I can’t imagine I will ever befriend this particular elephant of mine, despite my childhood subscription to Elefriends, and I will be satisfied if I can learn to tolerate it to the end of its intrusion into my life. As for everyone else, you will obviously see the elephant when we next meet, and I am happy for you to acknowledge it and ask me questions about it. I only hope you can be like the man in the fable and look past it to see that, despite my diminished stature threatening that I might shrink so small to be obscured by it completely, I am still here just as I was before.

To read more of Emma’s blog go to www.justemmagordon.co.uk