My husband Harlan and I have been together for 22 years, married for almost 17 of them. We met in college and started dating our senior year, when we discovered that we were both Art History majors and had nearly all of our classes together. We fell in love quickly and were practically inseparable until graduation. I knew pretty early on that I wanted to spend my life with him. Four years after graduation we were married in an outdoor ceremony in the Northern California wine country.
We were excited about all of the adventures we would have together. And for a while we did have adventures. We moved from San Francisco to Manhattan and then back to SF. We traveled to Mexico, Greece, France, Rwanda, Uganda and Tanzania. We took road trips up and down the California coast. We tried all of the latest restaurants and went to countless concerts—highlights being Radiohead on Liberty Island in New York, Bjork underneath the San Francisco Bay Bridge (complete with a fireworks show) and Fun. at the Greek Theater in Berkeley. We took evening classes: painting and sculpting for me, a creative writing class for Harlan. And we had our biggest adventure of all: bringing our 3 children into the world (our son Wyatt followed 2 years later by our twin girls, Ava & Eloise).
And then, 13 years into our marriage I was hit with my first bout of serious illness. I had been diagnosed with celiac and Hashimoto’s the previous year. Our kids were in 4th and 1st grades, we had recently transitioned from San Francisco to Marin, and I was back in school studying nutrition. Halfway through my program, in the spring of 2013, I began to experience extreme and endless fatigue (no matter how much I slept), muscle weakness, weight loss, anxiety and almost non-existent energy. It was scary. I had no idea what was happening and didn’t understand the significance of my symptoms. It took several weeks and a bunch of lab tests to figure out what was going on. As it turned out, my thyroid and adrenals had crashed, and I was suddenly and unceremoniously thrust onto the labyrinthine path of the chronically ill. The past four years have been one long experiment with thyroid medications, diets, supplements, stress-reduction techniques, and consultations with at least nine different health practitioners. In that time I have gone from taking trapeze classes, practicing yoga, hiking, singing with my chorus and seeing clients to spending at least part of most days in bed. Mine is not the only life that has been upended. Harlan’s life has been turned upside down by my illness as well, and, not surprisingly, our marriage has been affected. This whole “in sickness and in health thing” is no joke.
When I was a child I played a yard game called Monkey in the Middle. In the game two players pass a ball to each other, while a player in the middle attempts to intercept it. My illness has become the monkey in the middle of our marriage. Harlan and I are on either side of it, trying desperately to keep our connection alive. My illness, however, is a tricky bastard who finds ways to pull us apart. He prevents us from having date nights, traveling to exotic locales, and dancing in the living room. He makes me so tired and brain-fogged that sometimes I can’t even manage to ask about Harlan’s day at work or offer him support and comfort when he’s feeling stressed. I hate that I can’t be the partner I want to be and that he needs me to be. This is not the life either of us expected. We find ourselves on unsure footing as we navigate our new reality. So we muddle along, trying to figure out how to nurture our relationship with this monkey between us. Sometimes we muddle gracefully; at other times we are incredibly clumsy. Without meaning to, each of us has hurt and been hurt by the other. We have seen individual and couples therapists. We are discovering the importance of leaning on friends and family. Harlan has realized the necessity of continuing to have adventures, even if I can’t participate in them. Together we must create a new normal. We are coming up with a list of activities we can enjoy together, even when I’m feeling unwell: listening to music, reading the same book at the same time, playing Rummy 500 or Scrabble, memorizing and reciting poetry to one another, basking in the sun on our deck, playing guitar (him) and singing (me) together, taking Riley on long, gentle walks…
Our monkey is reluctant to leave us in peace. He is quite tenacious. But so are we. And we are determined not to let him get the best of us.