John and I arrived as dusk was settling in on Sunday. First, we checked me into the Family Lodge and then headed to the hospital proper to get him registered and into his room. I’m starting to learn NIH. It’s somewhat strange and surreal.
Despite telling us multiple times she would not be here, as we rounded the corner of admissions, John’s mother sat in a chair, surrounded by multiple bags of ‘stuff’ (her quilting, etc). She smiled widely at John. My heart bottomed out.
It has been a long few days, and yet this morning, as I rushed to get over to John’s room before the nurses arrived to take him down to surgery and worried about logistics of things that -in the end- won’t matter and I will not remember, I worried about her, sitting two floors below in John’s father’s room, fretting about her husband and her son.
John’s mother and I are like oil and water. We have never understood each other, and that is unlikely to change over time. We come from different places, we see the world through different lenses. Nine years in, It is about rubbing along as comfortably as possible since we have deep and unbridled love for the same man. Her son. My husband.
I’ve sat in this surgical waiting room twice before — first, for Alan’s surgery several years ago. John and I were together then. And then last December I sat here alone, as I do today, as John undergoes the same surgery he underwent last December. It felt much less intimidating today, I understood what was happening better, the nurses were more friendly. I am sending texts to John’s mother, as she sits with Alan upstairs in his room.
Healthcare is a bitch. I mean, it’s great, wonderful — sometimes ground-breaking and life-changing. But it’s exhausting. Hallways upon hallways of neutral colors, stale air pumping through vents. Dry erase boards covered in red or black ink. People on cell phones, their minds pre-occupied with something else, somewhere else.
It is nearly impossible to stay upbeat, positive, optimistic. Throw in an unexpected mother-in-law who already grates on your skin like nails on a chalkboard, and it feels like climbing Mount Everest every day. Sisyphus eternally pushing a boulder in Hades. (Yes, I know my husband will not like this blog post).
The thing is, it’s a struggle. It’s a struggle that I shoulder because I love my husband more than anything in the entire world. Because, despite the challenges of life, of my disease, the insidious M.S. with its joys of fatigue and spotty vision and muscle spasms — there is nothing in my life without my husband. His is my North Star. And because of that, because of that infinite love, I try very hard to rise up every day. To face the challenges presented by his disease, by his mother, by life. I do not always succeed. And I am not always graceful. Sometimes I falter, sometimes I crack and break. Sometimes tears come, without warning, as frustration and fear grip my heart and lungs. As I feel lost and alone, whipped around by unending winds of change and darkness. But still. The sun rises. It sets. Time marches on.
As humans, it’s all we can do. Rise up for the people we love.