Hope – Four Years Ago
This time four years ago I was discharged from Whangarei Hospital to come ‘home’ to celebrate a friend’s 30th who had driven up from Auckland.
After one of my biggest tummy flare’s, due to the most heavy pressure that I put myself under, I developed a peri-anal abscess. My flare had finally been controlled with oral antibiotics and my fissures healed with fresh aloe vera leaves. A few days later though, I became aware of this intense pain in my bottom area. When I stood up, the throbbing was so concentrated I had to lie back down. I had no idea what it was. I began waking up in the middle of the night to take painkillers. Eventually on one particularly bad night nothing helped. At 1am an ambulance came to pick me up.
A tiny hope flickered, that these months of unwellness might be coming to an end…that I could get on with things…
I hated having to give in and go, but the pain was so unbearable I hoped they could take it away. An hour or so later the doctor on call confirmed a peri-anal abscess and I began IV antibiotics. I spent the next day in Kaitaia Hospital (an hour from home), wondering what all this meant. At the time I didn’t have a smart phone, which is probably a good thing, so I wasn’t trawling the internet for all the possible outcomes. That night I was driven to Whangarei Hospital (2 hours away) in an ambulance, with a large strapping teenage boy who had just had his foot run over by a truck. His pain was palpable. I watched the stars rushing past, branches reaching up to meet them, feeling my aloneness expand and grow.
Long story short I got prodded and poked and examined by young male doctors for 6 days in hospital, still while on IV antibiotics, dragging a stand around with me to the bathroom and back. I was so keen not to risk a surgery near my sphincter muscle that I led myself to believe it was starting to feel slightly better. I still couldn’t stand for longer than a few minutes, but I told myself the antibiotics would take it all away. And I’m not sure if I convinced the doctors and surgeons, or if they really had hope it would go away too.
That small hope gave me an out…
My dad drove me back home. While I had been away Harlan had moved some of our stuff out to a friend’s beachfront cottage, where we stayed for 3 weeks while I recovered. A few friends were already there for the birthday weekend and I had a station set up in the lounge on my massage table. That way I could socialise without moving or having gravity work too hard on my bottom.
I’ve always put on a brave face. A protective shield of strength and independence to guide me through my tough times. But here, in this lounge, a little bit of that toughness was stripped away. I could hide so many of the confused painful emotions, but I felt bare and vulnerable and useless. I had to argue with that need inside myself to always be doing something. Preparing dinner, cleaning, helping. I had to try and let go, even just for a little while.
A week later I had to admit to myself that nothing was changing and my dad drove me back down to Whangarei Hospital. I was operated on overnight – the abscess drained. At 12am I emerged from my anesthesia haze begging for more morphine, and finally by the morning I could stop pressing the button for regular hits into my bloodstream. The pain eased, and with it came a trip back to the beach cottage that day. Erin, a district nurse, was booked to visit and attend to dressings.
This was the beginning of the end I told myself. With the abscess drained, I could fully heal and ‘get on with my life’. A little hope bloomed in my belly…
“Do you think I can book my flights for Australia in a few weeks?” I asked Erin about a week after the surgery. It felt like things were healing nicely and a lot of the pain had gone away. I had planned on heading back to the grain silos in South Australia to earn some summer cash.
“Just wait and see,” she replied, “wait for it to get better before you go and do that.”
Wise words. Hopeful words. Imagine if she had known the future.
Imagine if she had said: “No way don’t book those flights, you ain’t going nowhere. You’re going to think this is all healed, and then you’ll realise it’s created a fistula. You know, that condition you’ve read about, but tried to push out of your mind? You won’t be able to sit, standing will be tricky and walking won’t really be any fun for months…kind of almost years really…”
That’s where hope and optimism is a good thing. If someone had actually told me what was in store for me. All the pain and anguish, disappointment and raging emotions I’d have to experience, I would have given up. Right then and there. As we left the beach house and I could feel a bigger pain starting in my bottom again.
But no one did and so I kept hoping. I kept visualising and praying and doing whatever it took to give me moments of courage that this would pass quickly. That life would return to ‘normal’…
And now, here I am four years on, still with a fistula. It turns out I had to learn to get on with my life as it was, not how I wanted it to be. Not how I thought it should be. I had to learn to live it as it was. I had a new normal. An ever-changing normal. These last four years have been a rollercoaster ride of note. I’ve had such highs of goodness and hope, and I’ve had such deep dark lows that I’ve wished the lights would go out.
But through it all, somehow…hope.
I’ve used that sheer determination and strength that used to hide away that vulnerability, to navigate this journey. To keep going, one foot in front of the other. When courage collapses, I pick it back up and shake it around. Sometimes I yell at it and ask it to let me give up. But in the end I need it there to help me grow, journey and transform myself along this exploration of life and self. I want the courage, because what a path we’ve walked!
When I say I’ve had hope, I suppose it’s been more like my bedrock. I haven’t always felt like it’s there, but some part of me must…
Hope, stubbornness and determination have led me to a place of freedom. I may not have freedom to sit and travel the world and do those sorts of things right now. I used to pin a lot on those, but now I look elsewhere. There is now a deep flowing freedom in my soul that I never thought possible. Freedom from so many ties and expectations, criticisms and comparisons that kept a firm noose around my neck all those years. That noose sometimes choking me of the ability to breath in life and enjoy it as it was.
So here’s to hope.
And here’s to freedom. To letting go. Sometimes we go looking for freedom and find it in unexpected places. Other times we
I know hope can bring disappointment. That I know more than anything. But I also know that hope brings with it the ability to carry on and navigate and move, even when you have no idea what’s in front of you.
Right now, in this moment, I honestly think that the most important thing is to hold onto hope, but to let go at the same time. Keep moving forward, but don’t limit yourself with rigid expectations and shoulds.
Let life unfold without you fighting it and constantly reimagining the life that is happening to you in this moment.
#autoimmunedisease #lettinggo #freedom #hope #Crohns #healing #desperation