By: Amanda Newell
To the man who stayed when I told him to run. Today we’re celebrating 18 years of marriage. I don’t quite know how that happened. Some days it seems like yesterday and we’re those 25-year-old kids again – other days I feel like we’ve always been a team, united, a unit. But today marks 18 years since we stood before our family and friends, making a holy vow to love and cherish, “in good times and bad, in sickness and in health.” “In sickness and in health” – just writing those words gives me a sick feeling in my stomach because I know what the last 20 years have entailed and it’s been a whole lot more “sickness” than “health.”
But you stayed. Even when I told you to run. I was never someone who thought I’d find my “happily ever after.” That was for other people and novels with pink covers and pictures of shoes. Imagine my total shock when you dropped into my life, saying what I needed to hear and accepting me, faults and all, and seeing beauty where I only saw flaws. We fell hard and fast. We knew this was real. It was frankly terrifying. Trusting your heart to someone else when you’ve been so hurt before requires a tremendous leap of faith. “Will you be there for me?” “Will you still love me when the harsh realities of daily life come into play?” Doubts that keep you up at night, doubts that only intensified as I started to be plagued with even more strange symptoms.
First it was the Hashimoto’s thyroiditis (which to me sounded like a bizarre sushi roll) which meant lifetime replacement medication to deal with the fact that my body was attacking itself (little did I know this was just the first of many daily meds to come). This was added to the weird joint inflammation, fevers, hair loss, muscle spasms, fatigue, stomach problems and constant infections. Here I was, in my early 20s, and I felt like I was a senior citizen! I tried to hide things from you, but you saw through them. When I tried to push through, you would cancel our plans with friends and say ,“Let’s stay in and just watch a movie on the couch.” (Little did we know this would become our normal weekend routine!) Then, one day, it all went to hell.
What started as a “normal morning” headed to a doctor appointment to deal with these odd new symptoms ended up with a 911 call and ambulance trip to the local hospital. My limbs weren’t responding. They were twitching and moving of their own accord. It was the first time anyone mentioned the term “CNS lupus.” Things suddenly got really serious. With the idea of something attacking my brain and not being in control, the future became very uncertain.
I remember lying in that bed, hooked up to all sorts of machines, the beeps, the sounds, the smells, scared but knowing what I needed to do. I had to set you free. You deserved a life of freedom. You deserved a life without being someone’s caregiver. You were 24, so bright, an incredible life ahead of you and didn’t deserve to be shackled to someone for whom the future was not promised. As much as I loved you, I needed to set you free to live that life. We were engaged, not married yet. I figured I owed you that much.
What I didn’t count on was your supreme stubbornness and the power of your love. You refused to leave. You informed me you weren’t going anywhere. You informed me you were in it “for the long haul” – then you took me into the bathroom and gently washed my hair since I’d been complaining about all of the gunk from the EEG.
It’s not easy being married to someone who is chronically ill. (Um…huge understatement of the year!) There are days you are nurse, cook, dad, mom, chauffer, class parent, therapist and zookeeper. You are the glue that holds our family together. You are the compass steering our ship. When I fall (and with my balance, it’s often literal), you pick me up. When I veer into “woe is me” territory, you gently guide me back into the land of reality. When I’m being stubborn (who, me?! never…) and am refusing to acknowledge I’ve reached my limits for the day, you set me right.
Too many nights, it’s you who helps (OK, half carries) me up the stairs and puts me to bed, even before our kids. Too many nights, you’re lonely, missing out on companionship since we’re all in bed and it’s only 9:00 p.m. and you’re a grown-up. Too many nights you don’t sleep because I know you get up to check on us, worried about the latest health crisis. Too many times you miss events you’ve looked forward to because I’m in the hospital and you need to be there for the kids. Too many times you feel torn because you want to be there as my advocate but need to be there at work to support our family.
I’m not the easiest to live with. (There, I admitted it! Happy? Or shocked?!) I can be difficult (I know, once again, shocking!) and stubborn (see, said it again). The steroids make me very moody (can’t I at least blame it on them?!). My weight fluctuations from the medications make my insecurities go out of control, yet you look at me and only see the beauty. No matter how ugly these diseases make me feel sometimes, you insist on helping me still see the beauty. No matter how useless these diseases make me feel sometimes, you make me see how I still am a valuable contributor.
I don’t know what the future holds. That crystal ball is broken. I just know I’m so blessed to be on this crazy adventure with you. And I’m so grateful you didn’t listen to me and didn’t run.