(which is to say I am a photographer with Crohn’s not that I use the disease to photograph)
I feel this month has been the worst, or at least the most active that my disease has been, at the very least it has moved back to the forefront of my mind. Usually it is in the middle. So, I thought I would take the time to write a little, or lot, about it and how it impacts my photographic life. I don’t know how detailed that this post will get but as Crohn’s Disease is a bowl disease there will be poop talk, I will see if I can think of a way to highlight if poop talk is about to happen or maybe, like my condition, I won’t give any warning and just little it happen immediately. Fuck you Crohn’s Disease!
I now have more memories with Crohn’s Disease than without but I feel that is more to do with age than anything else, unless, of course, I have simply forgotten things before Crohn’s Disease which could be an age thing or could be the sign, or symptom, or beginning of a wider, altogether more worrying illness but like many idiotic and idle beings on this earth I am simply just going to believe that I am fine and go back to living out the rest of my existence in relatively blissful ignorance, hoping that the dull throbbing sensation in my ears, between my ears, behind my eyes, in my bones and general bodily areas subsides the same way the warmth from a hot bath gradually tails off and leaves your skin mildly warm and very pruney. Also, to help me navigate my memories, I, like the Gregorian Calendar, also have a BC/AD system in my life, funnily enough and by pure coincidence mine is also BC/AD initialed. BC is Before Crohn’s and AD is After Diagnosis. It is impossible to know for sure who invented which one first.
I now have more memories with Crohn’s Disease than without having lived with the condition for close to fourteen years. There or thereabouts. It has been a fairly turbulent journey, few ups and downs, well a lot of ups and downs combined with a few lefts and rights and also some standing up and a fair bit of curled up in the foetal position. It can be a comfortable position when accompanied with a hot water bottle and a concoction of painkillers. Those tasty, tasty painkillers. I find it difficult to put into words the everyday occurrences of my life with Crohn’s, talking about it I am used as I’ve had to discuss my disease/ condition with doctors, specialist, family, friends, strangers on the bus, you know, people. I am fairly well versed when it comes to discussing poop, textures, colours, form and pooping habits. I am so confident on my ability to talk poop that it was my chosen specialist subject when I applied to appear on the TV show Mastermind. Surprisingly I was never chosen to appear on the show, which is not the surprising at all as no one wants to hear a question and answer session on the Bristol Stool Chart while scoffing down dinner or breakfast or lunch, depending if people are watching on catch up. That stuff is easy to talk about because poop is a funny subject, in the most part, but the rest, the actual factual living with Crohn’s Disease is not always fun, in fact during the flare ups and low points it is definitely not fun. Now I have written, in brief, on and about this subject before but I am hoping that so this will be a slightly more thought-out, thought about piece, well as best as I can anyway.
Pain and discomfort is something that goes hand in hand when living with Crohn’s, like peanut butter and jam or a peanut butter, banana and crispy bacon sandwich – thank you King – or peanut butter and apple pieces. I am starting to think I have an unhealthy relationship with peanut butter. You get used to living with it, the pain and discomfort not the peanut butter addiction, I mean you get used to living with that too but that’s not the point. You (use of the royal ‘you’ there) get used to living with the pain and discomfort and find ways to relieve or mediate it. Sometimes. Other times all I can do is retreat to the comfort of my couch, put my feet up and stay perfectly still, apart from the constant ferrying back and forth to the toilet (I am getting tired with the constant use of the words toilet and loo, almost as tired as I am with using them in my day-to-day life and I am talking about three to four trips a day, some of those are lengthy as well. Like leg numb lengthy. Like so lengthy that by the end I am unsure where I end and the toilet begins. I become some weird toilet-human hybrid with the only benefit being that when – and when I say when I mean if – when the Porcelain Potty Wars of 2060 start I will be spared as a halfling. Besides all of that and just to keep my own mind focused I think I am going to start using different words for toilet, some will be universal and some not so much.) with the hope that it will pass. I have lost anywhere from hours to weeks like this, just laid up on the couch, foggy minded and laden with aches and pains. Fair to say it is slightly sucky.
Now, separate from but almost completed connected to, in the same way a light bulb is still a light bulb but won’t light up unless it is connected to some form of electricity, along with the ever-nagging pain there is the threat and ever-present feeling of needing to or the idea that I may need to or any minute now I will go to the bog. I’m an almost Thirty-year-old person who lives with the idea that he may shit himself at any moment if he gets too far from the commode. It’s an embarrassing and uncomfortable idea to live with. Sometimes I am afraid to fart in case anything decides to follow it out. Now I know that the passing of gas is a frowned upon thing in high society but I would like to have the option, plus they are funny, but it’s mainly about the option. Also, in a separate from but almost completed connected to, like the way the traffic lights at road works goes from red, through yellow to green but It won’t do that unless you swear at it for being on red too long, I developed a strange love affair with finding a clean crapper. It is a strange thing to do, I know that and it’s a strange thing to have a connection to but you have no idea how grateful I am when a restaurant keeps on top of its privy’s, such a relief when I find something clean to sit on. No lie, some of my favourite eating spots have awesome latrines. It is also crushingly disappointing when an eatery has a poor can but being the forever optimist and hopeless romantic, two things that are increasingly more difficult when constantly living with Crohn’s, I just learn to move on. I have a list of Top Poop Points in town that I can frequent when needs must, some free, some you must buy a drink in, no one ever said it had to an alcoholic drink but I think it would be rude not too.
There are other things, each independent and unique to each and all of us that suffer from the disease. Things like dietary requirements, both food and drink, treatments, when and how flare ups occur, what to do in case of emergencies, severity of the disease, persistence of the disease, if you have a bowl bag or not, if you need to get an operation or operations, all the little things, physiological but also psychological.
I think it is the psychological part that I struggle with most. Pain is pure and simple, is either there or not, in various degrees mind you. The classic pain scale everyone knows, ‘So, tell me about your pain? On a scale of 1 to 10 what number would you say it is?’. Anything below five feels like it’s not serious enough but no one wants to say ten because, even when it is, it feels too overdramatic. I usually hit anywhere for seven to nine, enough to be taken seriously but not win an Oscar for best new male lead. I live a life of a base pain level somewhere between three and (Error! Hyperlink reference not valid. This just popped up and I have no idea why but I feel like it should stay.) four and I have learned to live with it, others have it easier and others worse. But the niggle that never leaves is the niggle or notion or faint whiff, that I have let someone down. Be that my Partner, my Family or my Friends. That feeling starts small, ends in a flood and it is torturous. They all always comfort me, reminding me that it is ok but still the feeling can worm its way in. I know that I have missed a few massive things and that regret will always live with me. Fuck you Crohn’s! That niggle is also the persistence that plagues my photographic life. Along with the fatigue, the ‘I cannot move from this spot, nor barely lift a camera to walk’ feeling there is the ‘Look at the weather outside. How bright and beautiful it is. Image all the things I must be missing right now. All those wonderful lights playing with shadows, people moving around in the same dance. I should be photographing that. I should be out there making photos, seeing what the world is doing’, that is a crippling feeling. All I want to do is wander, aimlessly or with purpose or with both, with camera in hand snapping at whatever my eyes catch sight of. That feeling starts small and ends in a flood and it is torturous.
Sad, right? Well not if you have ever seen the first ten minutes of the Disney film UP! Now that was heart wrenching. I still remember where I was when I saw that film, I would tell the whole story but it is still too raw… yup too raw… I’m going to need a minute… … ok, ok, I’m ok. Thank you. [I paused, went to the WC and it’s taken me almost a day and half to recover. I don’t think I can say this enough, Fuck You Crohn’s] But my original point was to state that it’s not all doom and gloom. There are terrible moments, I had terrible moments with and because of my condition but there are up sides of being a photographer with Crohn’s. Actually, I think the benefit is the fact I have photography in my life as there is no upside to the disease. You see the urge to photograph forces me, even when I am feeling lethargic, to get out and walk around It keeps my exercise level up and keeps me healthy. It can be reason to get up some mornings and I have found that, sometimes, if I just get moving I am actually ok. Actually. It is a feeling of freedom or the feeling I have overcome. My own personal Berlin Wall except less historical, fewer people attend, that was definitely more of a struggle and there has been a lot more involvement for David Hasselhoff. It is the little victories that feel so great and I don’t think I would have so many of them if it wasn’t for the camera keeping moving.
And that’s it really and just like the film sinister, it started off well, got a little interesting around the middle but it started to fall apart at the end. That film definitely fell apart at the end, all mystery intriguing gone in the sad and dying seconds of celluloid and what was all the dancing about by kids in the house?
Thank you for taking the time to read though this piece. In the time it has taken to put this together I have spent somewhere in the total of 9hrs on the toilet, about 1729 sheets of toilet paper and around 1043ltrs of water in flushes, not to mention 3 packs of paracetamol and 1 pack of ibuprofen, oh, and 3 separate hot water bottles to easy and warm me. That is of course if my calculations are correct.
All thoughts are comments are welcome.