I am finding it hard to believe that the elephant and I have been inseparable now for exactly seven weeks. For anyone who didn’t meet the elephant when I first outed him (it feels like it’s a he; don’t ask me why) let me explain. The elephant is my naso-gastric tube – the latest piece of kit being put to use to try and wage war on my chronically active Crohn’s Disease. The elephant is also the reason I felt this blog site had become necessary. For the first time in thirty-two years since diagnosis, I would not be able to conceal my illness. All of a sudden, answering ‘fine thanks’ when exchanging pleasantries would immediately, and obviously, make a liar of me. The tube is a bit of a giveaway that all is not well. So I decided, if I could no longer hide the truth about my state of ill-health, I might as well at least be honest on my own terms. This has been a huge step in my long and bumpy road towards acceptance of the part of me from which I have never really stopped running.
Now, seven weeks on, I am obviously much better acquainted with my Nelly. I am still not sure I could call Nelly a friend, but he no longer feels like the enemy. Seven weeks is long enough to say that we are on the same team; after all, we have been through a lot together. It is seven weeks and one day since I last indulged in the most commonplace task of all, and shared a meal with Lovelyman, or anyone else for that matter. In fact, it is seven weeks and one day since I last ate anything more than a sugar free boiled sweet. I never really registered how much of a day is constructed around meal times. On a working day, we instinctively set targets for what we want to achieve before lunchtime. Those of us working from home then set aside time to prepare lunch, to eat lunch and to clear away from lunch, with our afternoon goals being put in place once we have refuelled.
All of a sudden my days spent working from home appear to be endless. There is nothing to punctuate the work with; no reason to break for longer than the time it takes to boil the kettle and make another cup of herbal tea. Even my bouts of insomnia seem to drag more than they used to; my usual modes of escapism through cooking and baking having taken a backseat. The joy of these acts has been severely tempered by the fact that I can’t sample anything I make.
It hasn’t been easy. I am certainly missing food, and all the rituals that come with eating. I noticed it on our recent holiday, possibly more than I had anticipated I would. Supermarket shopping is, for most of us, a chore best endured at the quiet times of the day. However, on holiday, a visit to the supermarket promises excitement and adventure. I love few things more than exploring the special diet aisles in foreign countries, and sampling the assortment of treats that I don’t see at home. Not this time. On this particular trip, I could only look and wish. The indulgence of cafe-hopping on a carefree holiday outing also lost some of its splendour after the first few cafe stops. I hate to say it, but there is a limit to how many times ordering a glass of water or a peppermint tea can feel decadent, even if it is in the middle of a week-day.
That said, I have been able to adjust to this change in my routine. It now seems normal that I sit at the table with a drink while everyone else tucks into a meal. If I’m honest, when my Crohn’s is as busy tormenting my insides as it has been for the past few years, it is not uncommon for me to avoid big meals. The only difference is that, these days, I can’t even pick. Quite simply: food is banned. I know that for some people, the thought of not eating would be horrific, but I have accepted it as part of my tubed regime. I may not like it, but I have acclimatised to it.
It never ceases to amaze me, how adaptable we are when circumstances necessitate change. There are some things, though, that I don’t think I will ever get used to. At the top of that list, is the staring. I suppose I expected that when this went in, it would draw more attention to me than before. I was prepared for the fact that some people are curious about, even fascinated by, illness, and that meant people might look harder in my direction. What I hadn’t expected, was the brazenness with which so many people seem to stare. I am not talking about children either. Children don’t need to stare. Their openness means they simply ask ‘what’s that in your nose?’ which is incredibly refreshing, and very easy to deal with. Once they have been given a simple answer, they forget that it is even there, meaning we can get straight back to business as usual.
The thing about holidays, is that you have more time to take notice of what is going on around you. Everything is moving at a slower pace so it is easier to observe and absorb your surroundings. So, I don’t know that there was necessarily more staring in Gran Canaria, but we certainly noticed it far more than we had at home. I had taken the same approach as I have done here and carried on as close to normally as I could. There was no way we were paying to go abroad, just to sit inside with me attached to my pump for the best part of each morning and evening. We went out, and it came with. Walking around the Botanical Gardens, I feasted all the way; strolling along the sea front, the waves drowned out the whirring from my rucksack; reclining in the sun, it was great not to worry about my picnic getting sandy. Like I said, we carried on as normal.
For some people, it seems, that isn’t acceptable. I don’t think there is any malice intended by their stares, but I wish people would realise how much of a violation it feels. I understand people taking a second glance when they spot the tube: perhaps they are trying to work out what is wrong, maybe they are puzzled by what goes into the tube, or maybe they just feel saddened by the picture of illness. What I can’t really forgive, are the prolonged stares; the ones that continue even after I have returned eye contact. It takes all my will power not to shout: ‘did nobody ever tell you that it’s rude to stare?’ or to ask whether ‘I have something on my face’ or even ‘are you lookin’ at me?’ because I know that to do that would achieve nothing. It would only lead to our own preoccupation with the tube and society’s lack of insight, awareness and compassion where differences and disabilities are concerned. So, instead, Lovelyman and I tried to laugh at each and every wide-eyed gawp we spotted.
Sometimes laughing was easy, particularly if the ogler tried to cover up their rudeness. One man clearly felt embarrassed by his actions, and his response to that shame was quite entertaining. When I made eye contact with him and stared back in his direction, he smiled and said, in an overly familiar tone for a stranger, ‘Hi. How are you?’ as if trying to imply that we knew each other. Another man nearly rode his bike off the seafront path while he tried to get a good enough look at me. A particular favourite of mine, was when an elderly gentleman had been staring and I turned to look at him, catching him quite unawares. He gave an awkward glance over his shoulders, then held his ice cream cone at arms’ length towards me, asking if I wanted to share it.
We tried to spot a pattern to the stares; to identify common factors in those who looked most intently, but the only link we could pin down, was the fact that the guilty party was always a person. So what conclusions can we draw from this? I think I have realised that the only way I can be affected by the people who stare, is by allowing myself to be. I could easily let it unnerve me, make me feel insecure, inadequate and odd, but why should I? I know that this little bit of plastic, affectionately named Nelly, does nothing to change who I am, and no amount of staring can alter that. The people who gawp have their own reasons, and their own internal narratives that compel them to look for longer than they should. Those aren’t my problems, though. I have enough going on in my own world without trying to take on the issues of every stranger I pass on the street. So I will carry on as I have done, looking back and smiling. If that prompts just one in ten of the wide eyed strangers to feel uneasy, then there is hope that next time they see someone who looks different, they will remember that feeling, and exercise restraint.
In the mean time, I will continue to grapple with Nelly; as long as we are on the same side, we can weather the storm together.