I remember when John first told me he had MEN Type 1. I remember it very clearly … And not clearly at all. Memory is strange that way.
We were lying on his bed in the apartment he lived in when we met, facing each other. It was bright, because all the lights were on. I don’t know how we’d gotten there. I don’t remember what preceded it. But I remember him talking to me in a clear, calm voice. Explaining in the best way he knew how what his disease was – how it affected his life.
I can say now – seven years later, marriage vows taken, MS faced — I had no comprehension of his disease until yesterday.
I stood in ICU, nearly delirious with fatigue – nearly uncomprehending from the pressure of surgery and hospitals and well, reality — and his surgeon drew me a diagram on a dry erase board and explained things in a way I understood. I think I will forever be in love with her for that — that, and she loves the restaurant scene in Philadelphia. (Plus, she seems to perpetually be in heels, and that just deserves respect!).
As I have mentioned – probably more times than necessary – John and I have been together for about seven and a half years. Every year he’s spent a week at NIH (National Institutes of Health in Washington DC) where his doctors have monitored his disease, any changes, any progressions. I’ve stayed at home. Watched ‘Grey’s Anatomy’ live, gone to dinner with my girlfriends … Made him feel bad for leaving me alone.
John is my whole world. He is the reason I am strong every day – the reason I schlep to Penn for my meds with a smile, and fight for normalcy. He is the happiness in my life, the voice in my darkness, the light at the end of every tunnel. He is reason and spontaneity and comfort all rolled into one. I know his breath in the stillness of night, his smell, his warmth. I do not ever want to know life without him. Because I already have – and it’s not what life is now.
I think a lot about our bedroom right now. Not in an amorous way. I’m not that girl. But because I yearn for its comforts, its quietness – the sound of Lucy’s snuffles in the night. As I ride the subway to the hospital every day, and collapse into bed at night, my mind is filled with memories of this disease, memories of things he has told me and I didn’t fully register.
I remember tears falling slowly, one by one, as he talked about MEN. I was trying to be strong, but my heart was so full of love for this man, and everything was so new, and i couldn’t hide that this news was devastating. But as time passed … we moved in together, we traveled to Wyoming, we adopted Lucy … it faded — it became part of our dialog but not actually part of our life.
All that changed in October. We weren’t anticipating it. But he drove down for a day trip, for some tests to be run, for a study he had joined to scan his body. And he came home with the news. He would need surgery. Sooner rather than later.
MEN Type 1 affects the endocrine system. It’s a genetic disease (John shares the disease with his father and would have a 50% chance of sharing it with any biological children he might have). It manifests itself in a myriad of ways — many people are mis-diagnosed with a symptom of MEN, and not MEN itself.
The scan told his doctors that he needed surgery, and it needed to happen right away. My husband is incredibly strong, and would deny it today, but the heaviness of the news weighed on him, it darkened the words he spoke as he told me about it. It was evident in the lines around his eyes, the set of his mouth.
I felt the heaviness but I didn’t realize it’s weight until the surgeon came to speak with me in the waiting room — much earlier than I had anticipated — and told me that things had gone well. He smiled — which seemed insignificant to me at the time — but my father-in-law said afterwards he didn’t recall if he’d ever seen that doctor smile before.
I know now what MEN Type 1 means. I know that it will never stop being part of my life, of my husband’s life. I will become more familiar with NIH than I ever imagined. But I am grateful for NIH, for the study he is part of, for the doctors who examine him and keep him safe. I understand now — more than I ever thought I would — what this disease is, what it means, how it will continue to silently ravage my husband’s body.
I sit and I type and my eyelids droop from fatigue and I miss my husband by my side. And I finally understand.