time

It’s been a week.

I have discovered – in the most humbling of ways – that I am not actually capable of keeping all balls in the air without some crashing to pieces.

I thought – incredibly naively – that I could continue to manage my company’s daily business AND be a present and supportive wife during John’s surgery. This was a vast miscalculation. It was flat out impossible. There were moments this week that I could not have been counted on to spell my own name correctly, let alone handle anything of significance at all. On Wednesday night – after seeing John safely ensconced in the ICU unit with his incredibly capable nurses — I barely made it back to the hotel.  I was seriously whacked out with fatigue. I lay down on the bed fully clothed (the energy to remove my sneakers seemed  impossible to summon).  I fell asleep before my dinner arrived. I couldn’t focus on anything. All my energy – for hours, for days, had been so solely focused on surviving John’s surgery that I had unknowingly exhausted myself.

I can tell you right now that my husband’s eyes rolled while reading that last sentence. He’s a seasoned pro at MEN, he’s had three prior surgeries. In fact, he mislead me about his surgery’s duration just to alleviate my stress levels because he thinks I take all of this stuff too seriously.  Maybe I do. But I don’t think I ever want to become jaded, hardened, disillusioned. Surgery is a miracle, a beautiful art that man has been perfecting for years. The knowledge that all the people who took care of my husband have – mind-blowing. And these people work at one of the premier places of medicine in our country. They are incredible.

I have never felt this tired in all my life. And I have MS folks, so I feel tired ALL.THE.TIME. I thought I could be super woman – do it all – but a point came when I knew I didn’t care.  Not even a little bit, not for a moment. About anything other than my husband. Life is a short, beautiful journey. And we all spend so much time fussing about insignificant things.

I love my husband. I love my family. I love my friends – especially Kate (God only knows why she’s still friends with me but I am so grateful that she is!).  I am grateful for my life and my job – the purpose it provides me on a daily basis.  I am not grateful for the stress, or the fact that no time is a sacred time outside of work. I do not love that I felt pulled in a thousand directions this week when I should have only been present in one.

That’s both my fault and a product of our society. We are all going so fast, things are so vital — we forget to stop and appreciate what is important.

I’m not entirely sure how to fix that. Or change it. But it was incredibly evident this week. And it was uncomfortable. I don’t think I should have felt any pressure outside of the surgery John faced. And I think – as a society — we need to figure out how to stop and smell the roses a little. Be in the Moment.

thoughts from The Palm

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.