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Post 12 Finding Hope

“Never let the things you cannot do prevent you from doing the things you can.” - John Wooden.

I love this quote. It’s become a lot more meaningful for me over the past several years, as I’ve learned to live with the limitations that come along with having a serious chronic illness. But I think this quote also applies to the “helpers” – the friends, family and caregivers who support cirrhosis patients. The helpers who sometimes might feel helpless, as they try to help their loved ones battle a disease with no cure, and very little treatment. Even though they might not be able to make everything better, the things they are able to do, really matter. I also feel that this quote can apply to the other types of helpers, some we may never even meet – researchers, scientists, doctors and nurses, all of the people who work behind the scenes to discover new drugs, and create better medical options for us. They may not be able to cure cirrhosis, nor prevent every single case – but that doesn’t prevent them from doing things to help us live longer and better with this frustrating disease.

I often talk about my life in terms of books and chapters and stories. For me, it was a few days before Christmas of 2015 that my story took a major plot twist, and my life started to unravel. I’d been progressively getting sicker for the last half of that year, but didn’t yet know that I had liver disease. My daughter’s dad left us, 3 days before Christmas. We’d been together for 11 years, and instead of a ring that I’d hoped maybe I’d finally get… I got a pile of shut-off notices, because while I’d been sick and not able to work, he’d been not paying the bills due to saving up to move out. That was the first step into what would be rock bottom. Just a few months later, I was transported to a major hospital in Seattle, with a failing liver; no explanation as to why, fighting for my life.

It’s been a long road back from that fight, to finding a new normal. Those chapters of life are filled with some legit trauma and hardship. Yet, every story has to have ups and downs, doesn’t it? The darker your bad times are, the brighter your good times shine, in contrast. It’s been almost 4 years now, since that tragic plot twist disrupted my whole world. That’s how long it has taken to climb my way back into the world again. To learn how to live with the unpredictability of this disease. To learn to love and laugh and live again, in spite of everything that has happened, and to face the uncertainty of a future with cirrhosis. And I’m ready to start a new chapter as we move into this new year.

Next year brings a new decade. And just as I have the biggest and brightest goals for myself and my own future – I have big dreams for cirrhosis care too. I would love to see more public education and awareness campaigns about the importance of organ donation. We realize that it would be silly to be buried with a car, house, or expensive jewelry, since you no longer need those things after you’ve passed. It’s just as silly to be buried with the organs you no longer need, since those could be life-saving for others in need. Effective encouragement to drive organ donor registration would change the life stories of so many people.

Another hope is that that the amazing research being done on liver disease will help bring new drugs for the prevention and reversal of liver damage – maybe even the possibility of new treatments for patients who’ve reached stage 4 cirrhosis - to provide options to live longer with this disease, and prevent the need for transplant. New drugs are so important, because as we develop a wider range of options, doctors will be more eager to start treating patients and doing screening programs, and perhaps they can catch liver disease at earlier stages.  No one should have to walk the trails I have if there is an alternative. Might my journey have been different if my doctors had known or just cared about liver disease? Perhaps not but I wish I had had a chance to try.

I hope you’ve learned a little bit about what it’s like to live with a serious disease like cirrhosis. But so many of the things that I deal with are things that almost every chronically ill person deals with too. I’d love for anyone reading this to do their best to remember that “disabled” looks like many things. So many people live with “invisible illnesses” that you can’t always tell just by looking at them. Anyone you know who’s living with a chronic illness struggles, even when they don’t show it. Here are a few other things I’d love for people to know about patients like me, whether it’s cirrhosis, or another serious disease that they battle:

  • We are sick even when we dress up pretty and go out and smile and have fun. We know our limits. And sometimes we push them too far. Seeing someone with a chronic illness out having fun doesn’t mean that they have been faking being sick – it just means that sometimes, we fake being well, so we can live a little.
  • We might need a mobility aid like a walker or cane one day, but not need it another day. That doesn’t mean we’re faking it. We might need our seat on the train or subway, even though we look “fine” to you. Cirrhosis might be chronic, but it’s also unbelievably dynamic, constantly changing.
  • We will have a million questions before being able to make plans with you. We’ll wonder how much walking is involved, how many stairs we might have to climb, are there benches to sit on, is there a nearby restroom, what types of foods will be there that fit into our diet? We will also regularly cancel plans, at the last minute, even after all of that preparation. This frustrates us as much as it does you.
  • Not every sick person is required to be inspirational. Sometimes life is hard, and it’s ok to just be angry about it for a while. Even on days that we know how lucky we are compared to others… we still compare ourselves to our old self, and it reminds us of how much has changed. We don’t “get well soon,” and that’s a tough reality to accept gracefully. We can count our blessings, find the sliver linings, but still be sad sometimes.
  • Healing isn’t an end point. Like grief, it’s an ongoing process. Healing is something you practice daily. It’s a constant process of breaking down, and rebuilding yourself. My condition changes regularly, symptoms flare and fade, and I bend and break and build back up again. There is no finish line.

Chronic illness has taken a lot away from me. It’s been hard. It’s forced me to create a whole new life for myself. And I’ll carry this disease with me for the rest of my life. I’m grieving, and that never really ends, does it? You get past the really intense stage of grief after the surprise of a diagnosis, but the process of grieving is something you do forever. I refuse to just cry under the weight of it all though. I choose to fight. To create a beautiful life, to enjoy what I can do and ignore what I can’t, and remember that I have the ability to write my story, my future, any way that I want to.