I was diagnosed with cirrhosis in May of 2016. It had been a rough year leading up to diagnosis – almost 9 months of repeated hospital stays, filled with countless tests and procedures, before the confused doctors here in my city transferred me in an ambulance over to Seattle. They put me under the care of an awesome hepatologist, who was finally able to figure out what was wrong with me. I will forever be grateful to the team there, for caring about me while caring for me, during the scariest time of my life.
During those months before diagnosis, I’d lost over 70 pounds off of my average-sized frame. It started slow, then sped up faster and faster, until muscles had wasted away. My pants literally fell off of my body, and I was so skin-and-bones emaciated that it hurt to take a bath. I could feel every rib and hip bone and every point of my spine, as they creaked against the hard sides of the tub without any fat left to cushion them. It really hit me how much weight I’d lost when I went to an appointment at the hospital. They had to find a child-sized blood pressure cuff, because the adult one was too big to get a reading off of my skinny arm.
Eventually, after being diagnosed and having a good team of doctors to guide me, I slowly started to feel alive again. My head began to clear a bit of the fog, I started to gain a little bit of strength, and was anxious to create a “new normal” in my life. But as I reflected on what I’d been through to get to that point, and wondered what life would be like now, I realized that I barely recognized the girl looking back at me in the mirror.
I had lost almost a year of my life, spending too many nights in lonely hospital rooms, and barely getting out of bed in between those stays. But when I looked at my reflection, it appeared that I’d lost so much more than that. My face was hollow, and there were so many new lines and wrinkles. The dark circles under my eyes were matched by the dark bruises that mysteriously popped up every day.
For me, the very worst was my hair. I’d always loved my hair – I kept it very long, it was full and bouncy and thick. I was known for my long wild “mermaid” hair. But after the severe malnutrition I suffered during my fight with liver disease, my hair was unrecognizable. It started before diagnosis – for months, as I got sicker and sicker, I started neglecting self-care more and more. I was so exhausted that I could barely get out of bed, and showering was near impossible. I stopped even brushing my hair, and it became a huge tangled mess. During my hospital stay, a doctor realized how bad I looked, and requested that the nurse clean me up before the ambulance came in the morning to take me to Seattle. She grew impatient, trying to comb it out, and asked me if it was alright to just cut it off? I wasn’t very coherent at the time, but I’m forever a people-pleaser, so I agreed.
A couple of days later, showering at the new hospital in Seattle, I realized that she’d cut 5 inches off of my hair. Let me tell you, losing 5 inches to a nurse with office scissors is nothing like losing 5 inches in a salon. Weeks later I was able to go home again, and made a new discovery – the rough patches that I’d been feeling on my scalp? That was stubble, where hair had fallen out in patches, and was starting to grow back. Needless to say, my old hair, a defining feature, was gone. I spent over a year wearing it in a ponytail to cover some of the damage and loss. Every time I would cry over the loss of my wild waves, I felt so silly and superficial, worrying over such a small thing, in the midst of so many other life-threatening syndromes and symptoms. I think sometimes it’s easier to push aside the reality of what has changed on the inside of your body, than the changes that happen on the outside. Those outer changes are, quite literally, staring you in the face.
It wasn’t just the changes to my face that I had to face. The physical changes went from my head to my toes. I’d lost so much weight that I was all bony hips and elbows. At the same time, I’d regularly balloon up in the middle as my belly filled with ascites fluid. My primary care once callously remarked that I resembled a beach ball, with sticks-arms and legs poking out. Strangers stopped me every time I went out, to rub my belly and ask when I was due. It was devastatingly embarrassing. Other times it was a different type of swelling, with extreme edema in my legs and feet, so that sometimes I couldn’t leave the house because none of my shoes would fit my swollen feet.
Self-love is a hard thing during even the best of times. Trying to adjust to the changes that chronic illness brings is far harder, and it’s complicated by the fact that it’s an ever-changing battle. You gain and lose weight, as your muscles waste away or your body retains water, and the proportions of your body fluctuate wildly, sometimes daily. When you are battling a deadly disease you are always remembering that you’re lucky to be alive. Focusing on trivial matters like new wrinkles or swollen feet or thinning hair or all three on the same day – those are the least important of your worries. Yet, those things DO matter.
I’m learning to love my body again, in all of its shapes and sizes, not in spite of my disease – but because of it. Cirrhosis is one heck of a beast to fight, yet somehow, this battle-scarred body of mine is still fighting and winning.
