525,000 moments so dear
Anyone who is familiar with musicals will recognise this as a lyric from Rent‘s most well-known song.- Seasons of Love. So, will this be a post about romance? Could it be a post focused on the quantitative value of the past twelve months? Or will I reminisce about our own company rendition of this song at the end of Act One of our university Comic Relief Variety Show (creatively titled The Show!) which resembled those infamous nineties Gap adverts in style and feel-good presentation?
In truth, I am not sure exactly what direction this post will take us in. I rarely know at the start, what I will end up with on the screen.
It has been a ridiculously long time since I last wrote – too long, even, for an apology or an excuse to have any kind of validity. In my defence, I think being happy has a lot to answer for. That’s not to say I was unhappy at the time of every post I wrote historically. However, writing this blog began as a form of catharsis. Each entry has enabled me to explore, share, rant, question and, ultimately, come to terms with another aspect of the myriad ways in which IBD changes, challenges and impacts my day-to-day creative lifestyle – even when I am at my best.
On reflection, there couldn’t be a more significant time for me to get back on the blogging horse than now. Just over a year ago, after seventeen months together, I prised Nelly and myself apart.
That is to say, I took my naso-gastric feeding tube out.
In daylights, in sunsets…
After the massive transformation the treatment brought to my physical health, and following the ups and downs of the emotional roller coaster I was riding, the feeding tube really had taken on an identity of its own. The tube and my illness had become synonymous with one another. Not until I took the tube out, did I realise that it wasn’t actually the elephant in the room. That was my condition itself. The tube simply became the neon sign that alerted everyone to the wide-eyed mammal – aka Crohn’s Disease – which I was desperately trying to keep hidden in the corner.
So Nelly and myself still come as a pair. I am no less burdened by Crohn’s Disease than I ever was before. Nor am I without my companion. Yet for a whole year, I have been standing on my own two feet, and Nelly has not been the first one of us that people notice when I walk into a room.
Insomnia is often listed as a symptom of chronic illness. I am not sure I would describe it as a symptom as much as I would say it figures that the two go hand in hand. Whether as a result of pain, as a side effect of medication, as a consequence of lengthy toilet sit-ins or emotional turmoil keeping the cogs whirring through the night or perhaps simply a person’s body being knocked totally out of whack from being in round-the-clock combat with itself, insomnia is something all too familiar to many IBD sufferers.
It is certainly true that I have spent countless sleepless nights hugging my wheatbag and dosing myself on pain killers. I have also devoted huge numbers of nocturnal baking sessions to thinking about people’s responses to my tube, people’s lack of understanding of what living with chronic illness really means and the need for more open dialogue about it from those of us who get it.
I still marvel at how it took the tube going in for people to notice my diminished frame, and realise I was ill. In truth, I was no more ill than I had been for the previous nine years. I was just nine years closer to losing the battle.
I didn’t ever measure myself at my lowest weight, and I certainly don’t see what the rest of the world sees, but I know that double 0 (that’s the equivalent of a UK size 2!) jeans sent over from the USA hung off me like clown trousers. That tells me there couldn’t have been many inches from one hip bone to the other.
No, this isn’t a typo. Nor is it a misuse of a capital letter. Allow me to explain: I attribute a great deal of my current relative good health to the happiness I have already mentioned. It isn’t quite so black and white as to say that positive mental health equals positive physical health – obviously. However, the two have a huge impact on one another.
Since meeting my lovely fiance, Miles (told you it wasn’t a typo!) at a point where I really wasn’t looking for a relationship and was totally settled and content by myself, I seem to have found it very easy to gain weight. More importantly, my body has learnt how to hold onto it. (It probably isn’t a coincidence that they finally invented vegan Magnums round about the same time too!)
Having spent a lifetime with a distorted view of my reflection, I find it hard to know what is big, what is little and what is just about right. I know I struggle with the notion of my clothes fitting differently. Now I sit at the very bottom end of the healthy BMI range. Right now, I am the heaviest I have been in about 20 years.
I know that is a good thing. That doesn’t mean it isn’t tough to manage.
In laughter and strife…
There are good days and bad days. I spend a lot of time laughing at my illness and making fun of myself and my situation – partly as a form of self-preservation; partly because I happen to like black comedy! Laughter is the best medicine and there are times where, to put it bluntly, if I didn’t laugh, I would most definitely cry so I choose the former.
So what is it about illness that still makes people so fearful of seeing or saying or opening up?
Why did it take me until I was 35 and faced with the prospect of an NG Tube, to finally give myself permission to explain more honestly than: ‘I’ve got Crohn’s Disease – but I’m fine!‘ ?
I’m still not entirely sure I have the answers. What I do know, is that my NG tube totally changed me – physically and mentally. It enabled me to find my own way of opening up about the elephant I’d spent my life trying to keep locked away. It allowed me to accept Nelly so that other people could accept her too. I won’t say I have learnt to love Nelly – anyone who tells you they love their chronic illness is either lying or perverse!
That said, I now understand the difference between acceptance and resignation. At last, I have come to accept, rather than dismiss my illness. It is that shift which makes it possible to be kinder to myself, to look after myself better and to give myself a fraction of the compassion I so readily offer to those around me.
In 525,600 minutes…
If the reflection time I’ve given myself over this past year only amounts to my reaching the conclusion that I do, in fact, deserve the same kindness, patience and acceptance I give to others, I’d say that would be a valuable use of a year’s thinking.
In fact, this year has been about so much more than that. This has been the year in which I was interviewed for Look North and didn’t hide behind the pretence of being fine. It has been the year in which I was asked for my story by online newpaper, i, and I gave the uncensored version.
And it has been the year in which I launched a GoFundMe page to raise money to produce a documentary.
How do we measure a year in the life?
It may have taken me a long time, but I have finally reached a point in my life where I am ready, able and willing to use my own experiences to try and challenge the stigmas surrounding IBD.
The project is still underway, and we are by no means finished, but we have just wrapped on a three-day shoot. Using the funds we have generated thus far, we are making a stand-alone short. With this, we will hopefully start to raise awareness about this horrible invisible disability.
Because I can now say with confidence and certainty that, occasionally letting people in on my reality, does nothing to change the way they see me.