It’s funny that it’s already April 21st (a day which deserves recognition as the birthday of a monarch who has done more for a country but also for women’s equality, than anyone will soon do again).
Last weekend, we hosted Easter for the fourth or fifth time — both sets of parents, plus my dearest friend (I am not sure how I have been so lucky to have a friend like her) and her significant other. I didn’t think it would feel so stressful, but it did. And while I think the majority of people in attendance had a good time, it always weighs on you when you believe you failed someone.
On Sunday, we leave for NIH.
It sits on my heart and my lungs, it weighs on my arms and legs. It stymies my mind. We spent a week there sixteen months ago and John had major surgery. And next Wednesday, he has it again. For the same issue. The past few days his ear and jaw have ached, and the pain — perhaps somewhat psychosomatic — has extended down his arms, into his joints. Surgery and anesthesia are overwhelmingly complicated. They leave you feeling powerless and adrift.
I woke up at 5a this morning. I had meds in the city and I knew the weather was promising to be brutal (it did not disappoint). I worried about rush hour and wanted to get a head start. The grayness of night still hung over the sky as I turned my seat heater on and set off on the drive.
Five hours later I was home. I’d made it by the skin of my teeth (God bless the poor man operating the parking lot ticket machine — I don’t believe I was the epitome of patience and kindness) and then, post-meds, after grabbing a soy chai latte from Starbucks (no longer a regular part of my unemployed life) I set off home and enjoyed a much better drive. Lucy was waiting, her Kong gripped in her mouth, her body twisting into strange contortions of what I can only believe was happiness. I absent-mindedly patted her head. I staggered upstairs. My brain was full of fog, my limbs felt heavier than anything I’d ever lifted. Such are meds days.
My husband has always been the example I strived to follow. He lives life and no one knows that his body is ravaged by a disease the doctors cannot control. I think of that, hold onto it, when I am feeling petulant and weak in my struggle with M.S.
Life is not easy. It certainly is not fair. My email contained a note from my mother – the status of her recent round of chemo and her health. It wasn’t bad. But it certainly wasn’t sunshine and roses. Cancer sucks. Full stop. I think of that when I am feeling utterly sorry for myself and my monthly infusions and complications of medication. When my eyesight dips in and out and I break a toe because I can’t fully feel my feet. When I find phantom bruises — deep and dark, purple midnight blue — scattered across my limbs with no explanation. When I can’t remember the day before because of the heat, the stress, the fatigue.
Lately I’ve put my tears on the shelf. My husband, who has always been the strength and steadiness in our relationship, is faltering under the crushing pressure. Maybe I shouldn’t have left my job, maybe I should have made different decisions. Maybe, maybe, maybe. What if. I am consumed by the worries of how I will get through the next few weeks when all that should matter is him.
I drove to get sushi for dinner – our first since giving it up for Lent. The sky was rain-washed, the sun a tangerine orange sinking gracefully in the sky. The greens were green, the blues were blue. The air felt fresh and full of life. The cows grazed lazily in the fields. Jim Croce’s “I’ve Got a Name” filled my car as it popped up on my iPhone’s random play.
I smiled. I sang along. I held tightly to the idea of this moment, this snap shot of why we moved here, why I left my job … what our dreams were and what they remain. I thought of how much we’d been through, how much we have left to face. I thought of my husband, working out diligently in our garage after a long day of work.
Life is neither fair nor easy. Life is a constant onslaught of things we believe we are incapable of overcoming. And yet … we do. We hold onto each other in the darkness, finding comfort in the people we love, the warm, strong touch of their hands. We breath deeply. We pray. We believe.