Finding a new normal.
“The strongest people I’ve met have not been given an easier life. They’ve learned to create strength and happiness from dark places.” – Kristen Butler
You can learn a lot from someone who lives their life with a chronic illness without letting it define or defeat them. Because living with a serious, incurable, life-threatening disease like cirrhosis is scary, and hard, and overwhelming. But once you get past the initial crisis of diagnosis, and you learn to keep a healthy balance between being hypervigilant, without becoming a hypochondriac, there’s a whole new world on the other side.
At first, I moved between two different mindsets – fear, and denial. The fear was that if I didn’t constantly stay alert, something bad would happen. I worried over every food choice, every hour of insomnia, and every new ache or pain or symptom needed my full attention to determine whether it warranted a call to my doctor, or just watchful waiting. I learned to take every precaution, to think of every possibility - knowing that no matter how much preparation I did, everything might still go wrong.
Then, my fear gave way to a form of denial. Denial can feel like an armor that you wear, protecting you from the reality of the very real danger that a cirrhosis diagnoses brings. I was so exhausted, from constantly thinking about my disease, worrying about the future, juggling appointments and medications and lifestyle changes… I guess eventually I reached a breaking point, where I just wanted to forget it all, and go back to how things used to be.
But, accepting the full weight and seriousness of your disease is the first step towards learning to live a beautiful life again. You never go “back to normal” after your diagnosis, but you can find a “new normal,” and it can be even better than before.
One of the biggest challenges at first was that the only thing about me that was different was my physical self. I was weak, sick, and exhausted. But my head and my heart were still the same old me. I still had big dreams for my future, I still wanted to find love, I still hoped to be useful and productive and happy and whole. But how would I have those things, now that I was sick?
I think we tend to focus on our pain and suffering with an intensity that we rarely use when we think about our blessings. But I’ve learned that the depth of the hardships you go through are what bring an even brighter shine to the good days. So, I made a commitment to myself to start spending my limited energy on counting the things I was thankful for, instead of being sad about the things I couldn’t change.
I also discovered that fear can be something useful, if you use it in a productive way. I realized that I could recover from failure, but I would have a harder time recovering from regret - and regret would come from living in fear, or denial, or giving up. It’s amazing how strong you can be when hard choices are forced upon you. And that strength is what helped me to find my passion for life again.
I think passion can be one of the hardest things to get back after being diagnosed with something scary like cirrhosis. You get so caught up in worrying about your day to day survival, that you forget why you want to be alive in the first place. There’s no point in fighting so hard to prolong your life, if you’re not going to truly LIVE your life.
So gradually, I learned balance. It’s ok to slow down. It’s ok to stop and smell the roses. It’s ok to rest without feeling guilt. My life might not look like everyone else’s life, and it may not even look like the life I had planned, yet it’s still MY life, to create each day in a way that brings me joy. Because my journey isn’t an empty one, fueled by chasing wealth, or fame, or wearing my exhaustion from over-work like a badge of honor. It’s a life full of appreciation for every small blessing, knowing that it could be otherwise, and knowing that many patients with my diagnosis aren’t so lucky.
We all have burdens that we carry in our lives, mine just happens to be a little heavier than most. And we each have a choice in how we carry those burdens – we can let them be an excuse for why we can’t do things, why we can’t reach our goals, and complain about the unfairness of having to carry a burden at all. Or, we can examine our burden with open eyes, and figure out the best way to carry the unique weight we’ve been given.
Maybe it’ll take me longer to reach my goals than it would have before the weight of my diagnosis was placed on my back – but I can guarantee I’ll get there anyway. Because learning to live with the uncertainty of a disease like cirrhosis has built me into a stronger person. I’ve learned that getting knocked down doesn’t mean that I have to stay down. And I’ve learned that dark days and sunny days will both be over before you know it, so you have to learn to appreciate the skies that you’re under, always.