I remember one visit John and I had at NIH before he had any deficits. We were waiting for the nurse to come and do his evaluation and the door was open. A man, perhaps around John's age, was shuffling along using a cane, fairly unbalanced. It terrified John. He didn't want to end up that way. And then he did. But he didn't seem terrified. Don't get me wrong- he had his moments. As much as I like to say (and believe wholeheartedly) that he was my super hero, he was still human and we all get scared. Especially facing cancer. But once it happened to him, he focused on getting back whatever he could. He just kept moving forward and looking for things to laugh at.
I remember the first Halloween after his surgery. A friend lent us her mom's scooter so he could drive around and watch the kids trick or treat. As we were coming home, he had this massive smile on his face, so big his nose was bending the way it did from where it was broken and healed crooked. He laughed an almost spooky laugh, full of fear and joy all at once. If I remember correctly, he stood up, looked around and laughed again, saying "I'm alive!" I wasn't embarrassed, although that is the emotion I initially attributed to my reaction. He scared the hell out of me. He was openly loving the fact that he had made it through this awful thing that could have killed him. And in so doing, he was, to my eyes anyway, acknowledging that he might die.
I remember when the doctor came back with the pathology and told us that it was, for sure, grade IV, a GBM. My world tilted, reality became unstable and everything seemed to shift. That memory is like looking through a fun house mirror. The terror. And I wanted to be outside- I remember clawing at the windows. And I couldn't stop any of it.
I remember a couple days before he died, laying on the small bed beside him. He was still able to respond with his hands and would try so hard to whisper responses that had finally become unintelligible. I was crying and telling him that I would be okay, that I would be a great mom, and that I would get through this and he didn't have to worry about me. And kissing his hands, rubbing his feet.
Wow. The tears that come all of a sudden are hot, like tiny pokers.
But listen, here is the thing. I keep trying to figure out who I am now. I am reaching back in time to try to reconnect to things from far away that I let go of long ago. And trying to remember the hardest lessons I learned about myself and about life before this. And the good thing is that most of the time, I DO feel like I can do this. I don't think I will do it exceedingly well, but then I don't know that it can be done exceedingly well. I think you get through it with honestly. I think you get dirty and you mess up, you hurt some people, scare away others, feel crazy and lost and confused, until you don't. At least not most of the time.
I feel like I am looking up from the bottom of a well. And below me were several worlds, filled with travel and love and tenderness, passion, adventure, mistakes, pain, babies and day to day stuff. And above me is hard to see- it is just that narrow circle of light. So I am imagining what I want to see. Or what I want to feel. I laugh still. I have all along. That is one of my gifts. I am not afraid to find the humor in things, even in things that frighten me. But I haven't felt joy. Not for a long time, it seems. And I think of the The Mustard Seed. And I know that there is pain all around us, in each and every house. But I can't believe that this precludes the existence of joy. I wanted to badly to grow old with John. He was weird and playful and original, energetic and funny...and now he is gone. And I still want someone to grow old with. I want to hold hands, kiss in front of my kids, have special bedroom based in jokes, a shoulder to put my head on when I am tired and sad. I want great big huge quiet joy, that now and then yells. And I want it to last a long long time.
John will always be a part of me. He helped me heal so many things. He loved me in a real and messy way, screwing up all sorts of little things and never on anything big. He is the father of my babies. He has branded me in ways beyond the two tattoos I have because of him. He is now and will forever be in my heart. But I want someone in my life, too.
I simply have no CLUE how to allow that to happen.