Ten years living with ulcerative colitis

Janine Prince March 2015This week marks ten years living with ulcerative colitis. Not an anniversary to celebrate. No. However a moment worth marking nonetheless and I’d like to bear witness to my experience. My intention is to do so as a recognition of all the other people who are living with a chronic illness or for those who might find these words when they are first diagnosed, and search (as I did at the time) for some hint that life goes on.
I haven’t learned enough in life yet, but I have learned that my burden is not the heaviest nor the only burden being carried. So many people suffer every day, and that’s the normal part of their day. Many of them are brave, they are courageous, generous, loving and all those things that people are and to me they seem to be saints because they do all of that without ever asking for pity or a special deal for their own personal situation.
I’ve never been like that. I grew up a self-centred, petulant and ego-driven individual who coasted through life enjoying good health and generally easy successes. If something didn’t go my way, I threw a tantrum. I was bad mannered and basically, if you’ll excuse the expression, a pain in the arse.

The fall

Like many people I was misdiagnosed in the early stages and also like many people, the arrival of this condition was extreme. I won’t bore you or try to shock you with the tedious and grotesque details, but if you are interested, by all means read about ulcerative colitis on Wikipedia and be warned, it isn’t pleasant and there are pictures. The first months were a traumatic roller-coaster of denial, endless specialist visits and a cocktail of anger, fatigue, loneliness and humiliation.
Anyone who has a chronic illness has probably had a similar experience in the broad sense. It is something that undermines your sense of identity, worth and optimism. I came to my knees and the landing was hard. Nothing was fair, and no amount of tantrums would change the physical facts. I kept fighting, and I kept not getting anywhere. Chronic illness does not have any obligation to get better or ease up or otherwise change itself just because your life is falling apart.

I can’t go on

For me, it got a bit worse psychologically even while my physical symptoms began to stabilise. Due to the large blood loss sustained on a daily basis, I had a lovey delicate pallor that was visually appealing. I didn’t have anything bandaged, or in a cast, or visible bruising – I looked pretty good. Inside I was in constant pain (no suggestion at that time from any specialist that I seek or simply be given some support for this, other than more drugs) and questioning if this might be a good time to make an informed decision to exist the great stage. Not only was I not confident that the daily regime of drugs would ever restore me to functional operation, but I felt that I had lost my place in the world. Who would ever want someone this broken?

I’ll go on

Thankfully, I didn’t have the energy or the requisite escape-velocity of self-loathing to finalise the exit at that time and urgent practical matters took my mind off the subject in the long, dark nights. If you’re in the first year or so of having been diagnosed with a chronic illness, please get support as soon as possible for managing your physical and emotional pain. Much as you may think it, you’re not currently in a position to make an “informed decision” about what to do with yourself. In hindsight, I can see it was my ego throwing a pretty big tantrum. A bluff I wouldn’t wish on anybody to call.
The sun rose in the east, arced through the sky and set again to the west. The tides of the moon and the wheel of the year swung around me while my bubble of self-protection and self-pity got cramped and ever lonelier. People have different experiences. I was slowly to learn that I was one of the lucky ones. For a long time I kept a list of illness I was grateful I didn’t have and it got longer as I began to listen to other people’s stories. The burdens I was unequal to carrying slowly lightened as I was able to return to work and also to listen with empathy to what others were carrying. It was still unfair, and so little in life was, that the bleakness never wavered. Days trudged by and the game became one of fighting boredom. I was still fighting, still not winning, still pushing people away as much as begging for closeness. It was a life, but it felt hollow. The fight had been to stop the illness from taking over, from changing things, from taking the freedom of choice away. Laugh if you like, it had done that from the moment it appeared, would I ever come to my senses and stop fighting something that had already won?

The serpent

The trouble was, chronic illness is so easy to see as an enemy. For years I thought of it as a great coiled serpent where my bowel should be. A serpent that in some nightmares ate me whole from the feet up. My powerful enemy could bring me to my knees at any time it cared to flex and coil, raise and strike. My feeble body was a warzone of drugs, fear and fatigue.

What if it is all ok?

Thankfully there are a lot of wise and giving people in the world, some of whom planted seeds of wisdom and compassion in my stony skull. I still had some long dark nights where I wondered if all this effort was for nothing, yet at the same time I slowly began to understand the incredible power of helping other people. I began to see a third way between the fantasies of freedom and total annihilation. The endless confrontations with nightmares opened my other eyes to the shadows I held within. Most importantly, I accepted that sometimes the pain was horrible and I stopped trying to anticipate that or wish it away. I held a rock and took it one breath at a time. I checked in every few breaths, maybe changed the rock to the other hand. Breathe. Right now. This is what is happening. Time helped the reality replace the fantasy. I could live in the cracks. Maybe I could bloom where I was planted too. What if I was ok enough?

It is what it is

There’s no snake now, no enemy, no answer either. I have a thing, like you might, or someone you know does. I manage it as best I can and sometimes I can’t. Sometimes I forget I have it, other times, well, I still have that rock to hold. My road in the last ten years has been hard work, and followed a river of tears. Along the way I’ve changed and (hopefully) grown. I wish you all the best on your journey, just remember, we’re all in this together.

Of course, your mileage may vary.

A sober assessment

One simple rule $Before we move off the topic of debt, there are some positive things to share. I find this subject quite emotional – as I’m sure many people do – so let’s clear the air a little with some practicalities.

One simple rule $ imageIn my past, I’ve been through the experience of some credit card debt going bad (which happened to coincide with some poor decisions about tax also coming home to roost). Out the other side of that experience I’m cautious about spending money I don’t have on hand. ‘Vigilant’ would not be too strong a word. ‘Terrified’ might even be appropriate on some days! I worry about it. I don’t really have much now and yet still I worry about it.

I worry about you having it. I do. It is too much. Debt is hurting us. It is one of the heaviest shackles stopping us from living a life of deliberate liberation, and it is voluntary.

Some people seem to think of credit card debt as a kind of charity to themselves. ‘Thank you credit card for helping out for the cost of a pad thai on Saturday night!’ You might be out of cash and craving those sweet noodles, but actually, unless you’re as scrupulous at paying yourself back in full and as quickly as you’d expect any of your friends to be, in reality you’re in a Ponzi scheme with your bank, and the house never loses.

Let’s talk about getting out of debt. That’s a pretty obvious next step conversationally but let’s not go into paying down or clearing it off, not budgets. Not haggling over interest or swapping balances and accounts. Not how to expand or grow your income or start a business on the side. Those things are all great tactics and they can really help you but I’m not the right person to talk about those. Honestly, there’s just huge amounts of useful information and lots of knowledgeable, well-meaning people to help you with all those things online already. Hit up Doctor Google with a few simple questions and you’ll be inundated with options and links. It is easy to find an approach that works for you. Just be aware of anything that people are asking you to pay for!

What is there left to talk about? There’s a key truth to debt that hardly gets any headlines. You could be forgiven for thinking that it is a secret. It wasn’t bad luck that gave my phone number to a collection agency. It wasn’t not having education or a job or support if I’d asked for it or an understanding of how to do a budget. I was lazy, busy, a bit selfish, maybe arrogant that I could do it differently – you know – normal. Even so, when faced with the bottom line, despite having the kind of habits that meant a lotto win would end up as more debt, I knew this truth and I bet you do too. It is just one simple rule and it works. I warn you now, it’s a tough one. It is not sexy. It is not huge glittering fun.

It is this: live within your means.

I know, right? Bor-ring. I can feel your eyes rolling back in your head. Stay with me on this one. I think it is radical. Daring. In this age of rampant entitlement, what could be more personally and politically powerful than to disengage from the consumer culture except on occasions of deliberate choice? Okay, that might be a bit of a long bow to draw, but think about it. Why do we immediately reject this obvious truth? Because it requires decisions and choices. It implicitly asks us to do without some things. Our fear of missing out (so common now it just goes by ‘FOMO’) immediately gives us an eye-twitch but reality is all about limits. We are finite beings on a finite planet. Our time is finite, our income is very clearly finite. Knowing this, doesn’t it seem almost childish to continue to believe in ‘later there’ll be more’?

That’s not to say that there’s no such thing as hard work that pays off, or ideas that meet a need and create happy customers, or great services and products you can build and grow from your own capacity to learn and create. It is just that winning lotto isn’t a plan. There is no magical unicorn going to come along and poop golden nuggets onto your welcome mat. Once we face our limits we get to make informed decisions about how to spend our time and the resources we already have. It is not just reasonable, in this day and age it is revolutionary.

Next week I’ll share a tool that will give you a glimpse through your blind spot, or a whisper from your fairy godmother about your particular secrets and self-destructive habits with money. You can skip it if you’re scared, or ask someone to hold your hand.
We can get through this together.

Making choices

Last week I shared with you the idea of provisional living and touched a little on the bubble of the myth of constant and inevitable progress. In writing, we’re always making choices. We’re constantly selecting one word or phrase over another, crafting images and stories that will resonate with our chosen audience and choosing when to pause or stop a narrative and leave the rest to our readers.

no answers only choicesAn aphorism that I’ve tried to live by for the past decade or so is “There are no answers, only choices” and I’d like to share that today in the spirit of exploring how to live inside of and create from a position of values in what feels like an aggressive, shallow and purely commercial world. I will disclose at the outset that I have a day job. I pay my way in the world from the position of a cubicle in which I write for my corporate overlords. I chose to get (and keep) this job and bear the consequences of that choice. One of those consequences is that I do not have the bo-ho credibility of ‘living off my art’. I don’t see it that way, but you might. My skills in communicating with people (and translating between people who speak the same language but can’t understand each other) make me useful in a business environment. It is no mean feat to remain useful, relevant and employed these days, but that’s not the most interesting choice to talk about.

Instead, let’s think about giving up the emotional and psychological payoffs that come from the behaviour of provisional living. In place of daydreaming about what life might be like ‘when I win lotto’ there were questions that started with ‘What is wealth?’ and ‘What do I think of as freedom?’ and lead to ‘What if I already have enough?’

Money wasn’t the only topic that came under review. Relationships of all kinds, working, debt, health, writing, travel, relaxation. In some ways nearly everything had become infected with an expectation that it would just get better by itself (thanks Progress!) or that eventually a day would dawn where I would be handed a golden answer. To *everything*.

While I lay on the couch, watching the sun pass across the ceiling and really getting it that the golden answer wouldn’t come, I started to play a game of ‘what if?’ Maybe you’d like to play it too?

What if I already have enough?

What if every life really is sacred?

What if I could help someone every day, just in the course of my normal life?

What if there are no unsacred places?

What if my purpose is simply to love and be loved in return?

What choices would I make if these things were true? What would I chose to live by – if I could chose anything? How would I be in my life if I sought out ways to bring my choices to life? Would I select different experiences, people, priorities?

What would you do if you turned out to be responsible for your life and your choices without recourse to any wish for it to be different than it is right now?

It is what it is. Then what?

One little thing at a time, you make choices.

For stuff, I decided that one thing in meant one thing had to go out. That tiny choice created a cascade of implications and considerations, not least was creating a kind of mindfulness about quality, emotional shopping, waste, recycling and boredom. So many choices we make without thinking. There are no answers about how much stuff is right, or which stuff is better or why stuff is such an obsession. There are no answers about why, or when, or who. I just made that one choice that felt right in my situation, and I committed to living by it and within the consequences it produced.

It took some time, but inside that choice came a new type of freedom.