Today, I'm having a feeding tube fitted. A small tube will be inserted through my nose, down into my stomach, and calorific gloop will be plopped hourly into my recalcitrant bowels overnight. Every night.
The tube will be taped in place and within days, believe it or not, I'll forget it's there.
However, the rest of the world will not.
There's something about tubes inserted in orifices that freak people right out. Ive spent time in wheelchairs, used walking sticks, held court in bed, but nothing says "pity the poor broken crip" like a tube.
This is what will happen : I will walk into a shop/restaurant/school yard and EVERYONE will stare. Some will pretend not to, others will quite literally gawp, slack jawed, making no effort at all to hide their horror.
Somehow the tube translates to non-tubies as "This person is dying." I don't know what it is, but almost everyone assumes you are beyond the reach of modern medicine. Somewhere, somehow, epic failure must have resulted in this incomprehensible, disgusting apparition.
The first time I went out in public with a feeding tube, I remember sitting on a bench with my hubby and a friend in a shopping mall. Bored with the gawping and pitying looks, I started to slowly suck my cheeks in and slide off the seat. If they wanted dramatic, I could do dramatic.
Another time, a guy rode his bike into a lamppost looking back over his shoulder at tube-a-geddon. That's direct Karma, that is.
Yet another time a woman in MacDonalds muttered to her kid that it was enough to put them off their lunch.
God forbid I should drink alcohol or smoke a fag? Tube crips must have no vices. If they do, that's clearly the reason for their tubey downfall. If I smoke, the tube must be lung related, if I drink, liver related. If I eat, people look nervous.
So dear world, It's a tube. Get over it. My guts don't work. It's not all that complicated, or even all that serious. I'm not dying, I can breathe just fine and if I fancy a mojito and a Marlboro, I shall jolly well have them.
However, there may be a silver lining. I'm taking my boys to Disneyland in a few weeks and may stoop to pulling the tubey-crip card shamelessly wherever pity might work to their advantage. As my recently departed darling Daddy used to say "no point getting old if you don't get sneaky".
"The first time I went out in public with a feeding tube, I remember sitting on a bench with my hubby and a friend in a shopping mall. Bored with the gawping and pitying looks, I started to slowly suck my cheeks in and slide off the seat. If they wanted dramatic, I could do dramatic."
ReplyDeleteThank you for this. I'm crying with laughter at the image. Stay bolshy Sue.
I only spent 24 hours with a tube in my nose, so I know that's no comparison for long-term tubiness. But I was actually surprised by how no-one paid it any attention. I went to the supermarket and so on and I didn't notice any stares over and above the usual. I was expecting it to be gawp-a-rama.
ReplyDeleteI hated the (very) short time I had a tube in. I wish I had thought of it the way you do!
ReplyDeleteHave a great time at Disneyland!
I've never had one and I had no idea people were such twats about it. I'm so sorry to hear it but so grateful you've written about it; you've increased one person's awareness at least!
ReplyDeleteI hope you have a wonderful holiday.
You are too funny and it sounds like you get it from your Dad. Have a great holiday xx
ReplyDeleteI had a bowels-not-working-properly phase about five years ago and had to spend a month in hospital during a hot summer. I ended up with a feeding tube but mine was inserted into a vein in my chest and had a huge bag of white gunge attached which hung on a complicated drip stand that bleeped a lot when the line clogged up. Being a determined nicotine addict I would push this contraption through the hospital to some benches outside several times a day (and night). I got all sorts of gawping and disapproving glares and tuts which were starting to get to me. Then this really thin guy turned up with even more contraptions attached to his skinny body than me plus he was in a wheelchair. We became great smoking buddies.
ReplyDeleteYou made me smile this morning - thank you :)
ReplyDeleteI hope you have a fantastic holiday!
MPs everywhere, may I introduce to you Susan of Nine, Tertiary Adjunct of Unamatrix Zero-One. Resistance is, of course, futile... :-)
ReplyDeleteI recently watched an episode of "Law and Order: Special Victims Unit" where one of the characters had a pre-term baby. One of the detectives was arguing that the baby MUST be seriously disabled. "She cannot even feed herself, she needs a tube!" I agree that the fictional baby was in a bad way (they mentioned other problems), but her inability to feed naturally was IN NO WAY evidence of this.
ReplyDeleteI have family members who were pre-term and fed through tubes until their brains developed the whole "let's suck this" reflex. They are energetic and, not that it should matter, except for the sake of accuracy, completely able-bodied. Their hearing and eyesight and mobility and balance and everything came through the "being pre-term and fed through a tube" thing just fine. As I say, I only mention their being able-bodied for the sake of accuracy.
I hope we would love them just as much and have just as much faith in their abilities if we had been less fortunate.
And let us not forget Esther McVey's words of wisdom: "Only three per cent of people are born with a disability, the rest acquire it through accident or illness, but people come out of it. Thanks to medical advances, bodies heal."
ReplyDeleteThanks for making me smile this morning. You've tackled a sensitive area with your usual wit.
ReplyDeleteEnjoy Disneyland and I agree with your Daddy! :-)
Hello to Sue et al. Thanks for being so openly honest about something some people might not know how to talk about, but who appreciate the kind humour you bring to the subject. I hear that cyclists in the 'Tour De France' are looking at tubes as a way of receiving liquids required to re-hydrate their bodies whilst they ride, which is pretty enterprising. Tubes are everywhere! We fly on huge tubes with wings whenever we go on holiday abroad and we couldn't enjoy a nice pint at the pub without tubes delivering our favorite tipple to the bar. My favorite sweets were smarties, probably because of the tube, remember popping the lid off like a gun, lol. Hey, here's an idea, why could have a non-compulsary 'National Tube day' to show how wearing a tube isn't anything to take notice of. We could have multi-coloured tubes! Well Sue, hope you and your great family have a lovely time, you all deserve a wonderful vacation.
ReplyDeleteWhat a nice comment and a great way of looking at the tube thing
DeleteThanks for that I had a good belly laugh. I have never had a feeding tube so can't imagine what it must be like to be gawped at in the way you describe.
ReplyDeleteIt did remind me however of an occasion when I went to a large shopping mall and used a shopmobility wheelchair. Whilst in a shop I realised that I wouldn't have time to get the wheelchair back before the shopmobility closed (unfortunately way before the shops did) so asked my friend if she would take it for me. After yet another tedious day of being gawped at when I stood up I said rather loudly I admit, oh my god I've been cured, the look on the face of the shop assistant and other shoppers was priceless.
I hope you and your family have a fabulous holiday.
ROFL! Great story, wish I'd been there!
Deletehave an awesome time at disney!!
ReplyDeletehave a nice trip sue and enjoy
ReplyDeleteHope you and your family have a great time in Disneyland..however..a friend of mine recently took her 9 yr old daughter there. I don't know where your staying in Paris..but I strongly suggest you purchase food outside the park to take in with you as there are no food outlets in the vicinity of Disneyland and the cost of a Hotdog in the Park is an exhorbitant 14 Euros or £11.00 each..be warned..:-)
ReplyDeleteHave a fantastic time on your well deserved holiday Sue! ;-)
ReplyDeleteHat tip to you and Chunky Mark you are now world famous (not that we wouldn't trade fame for a little justice and sanity in the world today). What we see happening in the U.K. is happening all over the world at the moment. And if you think what's happening there is sneaky we have the "sequester" over here. They didn't even give anybody a chance to speak about cuts to the poor and disabled they just went ahead and made it automatic. Pretty low down if you ask me. Anyway, keep up the good fight. We're all in this together. (your friends from the U.S. Canada and Mexico)
ReplyDeleteEvening Sue, long time no speak. Hope you have a cracking time at Disney, and wave that card to your advantage as much as you can....you deserve it......PS Keep up the good work. Don't let the Tory B******* get you down :-)
ReplyDeleteBit of a belated comment but thanks for making me laugh on a crappy morning!
ReplyDeleteI hope you and yout little 'uns will love Disney. We took my autistic baby brother there a few years back and had a great time. I was stuck in a wheelchair most of the time but the parks were all accessable and the staff were just the right balance of attentive without being overly 'helpful'. Most of the time they didnt even bat an eyelid at my presence which was perfect.
If you can try to go to Discovery Cove. Also great with the disability access right down to beach wheelchairs and the chance to swim with dolphins is incredible.
All in all its a great place to visit but one word of advice. Make sure you have your camera out when you get to customs and they check your meds. The look on the guys face as I handed him my haul was hilarious.
I wish I could say that I was surprised people were so rude as to gawp at you and make comments. Whilst I've never needed a tube myself I've known a fair few people who have. Mostly those with bowel and liver problems, one with anorexia. As seems to have been your experience, most found that far more difficult to deal with than the tube (which if fitted properly shouldn't be uncomfortable) was other people's reactions to it.
ReplyDeletePeople make all sorts of assumptions, most of which are wrong. Cancer isn't only caused by smoking, liver problems don't exist only because of alcohol and feeding tubes are needed by a wide range of people for a wide range of reasons. Even if someone does need a tube for a reason that's connected to lifestyle choices, does that give anyone else the right to judge? I don't think so.
Well said Millitoria. I find that the people who judge you on lifestyle choices are mainly hypocrites anyway and anyone who REALLY doesn't understand why you have a tube inserted in your nose/ ear/ rectum/ mouth, etc, is probably a brainless fool, as most people who go around wearing tubes on their body are doing so for a VERY GOOD REASON?! Is it really so complicated?! DOH!!!
DeleteHi, eye-opening post, thank you :)
ReplyDelete