What is it like to become a cirrhosis patient? It’s like, I’m still me, same body and face and places and people. But it reminds me of helping my 3rd grade daughter Abby with her math homework. It used to be that doing math was simple. You did addition, subtraction and you carried a one. We all did it the same and it made sense. But now, it’s Common Core; there are so many new steps that make it feel overwhelming, confusing, nothing is simple and nothing makes sense and by the end of the day I’m so tired. Sometimes, that is what having cirrhosis feels like – The same tasks need to be accomplished, but suddenly the process to get there has changed and become so much more complicated.
First is addition. You add in the doctors, appointments, insurance copays, and bills. Next, add up all of the new prescriptions that you need to remember to take, some with food and some never with food, add them into your daily routine in the morning and at night, maybe add them into your purse to take in the afternoon, and don’t ever forget, maybe adding an alarm to your phone.
Next is subtraction. Because cirrhosis also takes so much away. You lose people. When you get sick, at first people are supportive, they send flowers and cards, they visit. But when you don’t “Get Well Soon,” people become distant. My daughter’s father left, after 11 years together – not just due to me getting sick, but the strain was definitely a trigger. Then I had to stop working. People call you lazy when you don’t work, as though you would choose to sit home all day. As though being sick is a vacation, a luxury, a good time. Not working takes away your identity, your purpose, makes you feel less useful. And all of these things took away my link to other people, my social outlet, my CONNECTEDNESS. I felt like I didn’t fit anywhere anymore. I was “other.” A sick person. Different. All things subtracted from a life that had felt whole, but now was full of holes.
As a woman, I’ve never been overweight, but I was always on a half-hearted “diet,” as so many of us are. But liver disease changes that too. I’d always wanted to be “skinny,” until I became so sick that I couldn’t eat. I lost over 70lbs in just a few months, and was skin and bones and so skinny that it hurt to sit in the bathtub. I had my pants quite literally fall off of me in public – more than once. So, let’s add a big scooping of embarrassment onto our equation. A random memory defines a turning point; I was grocery shopping after getting stabilized a bit. I needed ranch dressing. I instinctively reached for the non-fat version that I always bought…. then realized, no. Not anymore. Even when it comes to the most mundane tasks, nothing is the same. I need the ranch dressing made with full-fat, all the calories, I’m wasting away here, I need anything I can get. I wondered, how did absolutely everything change so much? And I cried, in the middle of a grocery store dressing aisle. Cirrhosis is such a weird, complicated disease that even buying salad dressing becomes an emotional event.
Then, we get into more complicated mathematical equations. You’ll need to learn what labs are used to calculate your MELD score, a new equation that will become very important as a liver patient. You’ll start reading labels on every single food that you want to eat, as you add up your sodium, every day, staying under the magic number your doctor gives you. Maybe you have to watch other things too, like your sugars or fluids or carbs, oh my. So many things to keep track of, and all you really want to do is take a nap.
But… Cirrhosis also adds things to life. It adds a new appreciation for the little things. Doctors at one point didn’t give me very good odds. Doctors shouldn’t do this, even though patients ask for it, sometimes even beg for it. Human bodies are incredible, and diseases are unpredictable, making most of the predictions that doctors make not very accurate. My doctors threw out numbers of months and years, odds and percentages, and their math was all wrong because I beat those odds, and here I am. But during those early months after diagnosis, I felt weak. I felt fragile. I didn’t tell anyone but my mother, but I was scared to go to sleep at night, fearful that I wouldn’t wake up again. So I did a lot of thinking and searching, trying to make peace with these new scary feelings.
I counted out the years I might miss with my daughter, as she grew up. I wrote out letters for her, to read at milestones as she grew, in case I wasn’t there to guide her.
One by one I also wrote out letters to each person in my family, and a few select friends, saying anything I felt was unsaid. Just in case.
And then I decided, that now that I had realized all of the things I might lose, if cirrhosis didn’t let me grow into the old woman I’d expected to become, and how precious all of the things I had around me truly were – that it was time to start squeezing every bit of joy out of them that I could. There is no cure for cirrhosis. But none of us know our fate. I know what I’m up against, and I’ll fight it. And in the meantime, I’ll live. Because life is still beautiful, and it’s even more beautiful now, that I realize how truly grateful I am for every minute of it that I have.