Post 11: Living with cirrhosis.
I often feel like living with cirrhosis is like living an exaggerated life.
The peaks are higher, the valleys are lower, and the edges between the two are so very much sharper. Each decision you make takes on an exaggerated new significance – an unhealthy food choice doesn’t just mean a chance at gaining an extra pound or two – it can mean noticeable swelling from the excess sodium. Not being hypervigilant about germs doesn’t just mean a chance at catching a seasonal cold – it can mean a hospital stay from virus-induced complications. Each choice, each day, becomes magnified under the lens of your cirrhosis diagnosis.
Adversity often feels overrated. Yes, it builds character, and I’m a personal example of how going through incredibly hard times doesn’t have to leave you feeling defeated, it can help you build a story of personal heroism over enormous challenges. Yet… adversity is still so darn HARD when you’re in the midst of it, isn’t it? Telling someone to stay strong, that things will get better, that it will build character – those things mean very little, when life is in a very dangerous, precarious, uncertain place.
But those clichés really are true. Hardship leads to becoming a more resilient person. My daughter asked me once, if I had magic wishes from a genie, would I use one to go back and fix things, make it so that I didn’t ever get sick? And that is one of the hardest questions that I’ve ever considered. Because… Oh, how I’d love to not deal with the day-to-day stress and vigilance that come with being a cirrhosis patient. To be able to toss away the cloak of worry that rests on my shoulders, always, that reminds me to make careful choices, to be aware of how I’m feeling, to mentally keep a running tally of symptoms and side effects to mention at my next hepatologist appointment. Yet, if I am perfectly honest, and I know it sounds crazy, but… I’m not sure that I would change that part of my story? Because facing death – really, really facing it – and all of the incredibly complicated feelings that come along with that as you realize you have a disease that could end your life in an instant… Well, it somehow lifts a veil on the world. Everything that matters comes into focus. You live differently. You live with a passion, because you know that at any time, things could be otherwise.
You can get mad, or you can move along with living life in spite of the adversity in your way – and you don’t have to live with a chronic illness to understand that. When you recognize that a challenge is out of your control; when there is no fix, or solution, or cure – that is when you have to change yourself, and change your way of thinking about the problem, so that you learn to live in spite of it.
Part of living an exaggerated life is learning to deal with things in new ways. I was diagnosed in mid-2016, just a couple of months before my daughter turned 6 years old. Her dad had left a few days before the previous Christmas – not because I was sick, but it was definitely an added reason. My mother was my caretaker at the time, but she also juggled several part-time jobs that she’d taken on, to help me cover my bills. So, while my little girl was learning her letters and numbers while away each day at school in kindergarten – at home, she was learning how to call 911, memorizing our address, and deciding which neighbors would be most helpful in an emergency if she couldn’t find my phone. It felt heartbreaking, to put that burden on her; but it was necessary for her to learn what to do if something happened to me, since she was the person who was home alone with me the most.
Another part of life that became an exaggerated parody of what it had been before, was dating. I had spent 11 years with Abby’s dad, and then a couple of years recovering enough from illness to venture back into having a social life again. I slowly rekindled old friendships, keeping only the ones that were compassionate and understanding about my new limitations and frequent last-minute cancellations. But dating? Oh boy. Each potential date brought layers of anxiety – A casual “meet up for drinks” date was no longer an option. A dinner date could be problematic, since my dietary restrictions made it hard to find safe meals when dining out. Something exciting and fun like concerts or festivals or sporting events could be exhausting, and I’d never know if I’d have the energy to attend something like that by the time the weekend rolled around. I eventually settled on simple mid-morning coffee dates, but then the anxiety would be back all over again when it was time to consider date number two.
But, I’m learning that life is just going to be messy sometimes, no matter how hard you try. Honestly is better than hiding away. And I can’t learn from my obstacles until I face them and try to overcome them. Because with so many things that can, and regularly do, go wrong in my life – anxiety is kind of a given. Since I can’t completely get rid of all of these exaggerated complications, I might as well learn to make them work for me.
I’ve learned that it’s not the actual events that happen to us that matter the most – it’s how we think about them. Each of us have the ability to write our own story in our heads, to frame a situation in a way that makes us a victim, or a conqueror, and to move towards a dead end, or a happy ending. My life took a major turn from what I’d planned - 2016 was quite the plot twist, that’s for sure. But as I adjust to this new, exaggerated form of my story, I’m learning that cirrhosis does not, ever, have to be a dark cloud over my travel though life. We all, every single one of us, can harness our hardships into a storyline that creates a triumphant new beginning. Cirrhosis might have created an abrupt end to my “old life,” but it’s only the beginning of a new story that I am determined to make into a beautiful one.