I think the greatest misconception people have about my marriage is that I just found a man who was willing to hold me up when I couldn’t walk; a man who happily would lift me into the bath and take care of me when multiple sclerosis took over and I couldn’t move. The love fairy came down and sprinkled its magic love dust on us and we went off into the sunset.
That always baffles me. My close friends would laugh. They know how hard it has been.
I guess, “Why wouldn’t they?” think we were always like this. People see our pictures. And they are true to life. Happy. Kissy. Feely. But what people fail to see is that our marriage was not always that way.
T and I went from a whirlwind romance to marriage, to children, to PPD and crazy struggles…to sickness.
I remember one Christmas, us sitting in an unfinished basement – dusty and cinder. Back-to-back, each of us, slowly said, “It’s time…how do we do this?” We were infinitely wounded and lonely and great roommates. But so lonely.
We agreed that separation was the only way. We walked back up the stairs after that conversation. My heart, left behind, barely beating and dirty on the uneven cement.
The hole inside was bigger than I can possibly put into words. I knew what had to be done, but I was still half a woman. Half a mom. Half a smile. Half a hug. I felt irretrievably broken. I left my heart on that basement floor. What did I need it for?
I was done, and I was fairly certain that trying with someone else was pointless. I could never expose all of me again. There are parts of me that are extremely open. I share everything in my words. And yet, there are maybe only four people in this world that I allow to see most of me. The truth about my reality is that it is very solitary. I am sick. I live inside. I am constantly in my head thinking. Even with a family, I am a loner. I have to catch myself and tell myself to go be with them, to pick them up and hug them. It's in my nature to stray off on my own.
I write from a tiny room, in a tiny corner of the world. There are parts of me I was bold enough to share at twenty-eight, but at 36, or however old we were at the time, I was so guarded. Tony was the only man who knew all of me.
Anyone else in the universe I stay 3 feet from, I look down always. I walk with books, reading, like a kid does reading their phone. I walk into trees. I sit to the side, especially if I have the cane. There was no one that would be able to see all of my world again. I didn’t want anyone to, regardless.
My life in my twenties was centered around romantic love. Now it’s more based around art and peace activists. My girlfriends and I immerse ourselves in writing and sharing. We fight for peace. THAT is the only love I could allow myself to engage in again. A love for the world, for humanity. That, and art. I would hold onto my girlfriends like hell and just keep going. If I loved again, it would be a woman in a different type of way.
The depths of love I have known to be true in my aging years, consists of women activists and artists, and two men. My love would go there.
For the next few days after "the talk" I was intensely inward, thinking of all the things that went wrong. All the things he didn’t understand. All the things HE did wrong. And it hit me, I wasn’t focusing on all the right he did. I wasn’t saying “THANK YOU” when he did them. I wanted him to SEE me, to treat me a certain way. BUT, I realized if I wanted him to do those things, I must lead by example. Was I?
We are reflections of each other, yes?
Something lit inside me. I began to appreciate the good. The not so cool things, I shared. We discussed. We worked on. I caught myself looking at him in a new light. A light long forgotten.
That heart on the basement floor, began beating again. Slowly and then more frequently, consistently. Stronger.
All the things I did, Tony began to do the same - we were indeed reflections of one another and one day – it happened. We were laughing again. We were a family.
Spring was coming. Birds were singing. My legs were wobbly, but I can remember the day I knew we’d be okay. I held onto the splintered banister into the basement and headed downstairs. I sat by my heart and remembered the talk. How much it hurt. It hit me that it hurt because we weren't meant to be apart. I paid homage to that night and cried, collected my abandoned heart and went upstairs to the warmth of our home. I coddled it, dirty and all. Restored it to where it was meant to be all this time.
In my body, and his.
That is not to say that there is no strength in knowing when to say "enough". Sometimes that is the strongest thing you can do. For us, however, we truly were meant to work to find a way. We were misguided ghosts who needed to find our way back. You know love, whether you spend your life loving someone, or just a season, is never wasted. For whatever time you had - it was real, it was love. It was a WIN.
But we, we weren't meant to pack it in. Our love wasn't a short time. It was a lifetime.
It is so sweet that people think this is how we always were - skipping around (I can't skip btw lol), swinging our hands in unison as we held each other – but we weren’t. Why am I sharing this? Because I want you to know these things are not just given to us – we must work hard, we must earn. If we can do it, so can you.
There’s a learning curve in marriage. And if you add kids and a horrible degenerative disease to that – it only makes it more complicated. Life is so exhausting. The trials never end. It is hard to be nice when you are tired. I understand. It's hard. Ans you know what? It always will be.
And yet, our answer was very simple. T and I stopped picking on each other. We stopped picking on each other! That was the greatest change. And we started saying “thank you”. We always say thank you and tell each other that we appreciate what the other did – no matter how small. It can be him running to store for a medication for me, and I will say, “Thank you Papa…I love you,” at least ten times. Because...I am...thankful for him.
People think I hit the lottery with love. And I did. But life still threatened it the way it does any marriage. It gets in between the panels, nailed shut and tries its hardest to splinter them apart, rusty nails bent…each of us flying in different directions.
But we fought it. And it all changed when I stopped picking on him and started looking at my own behavior. I vowed to model the behavior I longed for in a partner. I’m playful. I kiss him all the time. I touch him if I am just passing by. We laugh. We’re good. He does the same. He sacrifices so much so I can work on the book.
I fight to work his cycling schedule into our chaotic lives. His friends are impressed by how supportive I am. The guy at the cycling store told him I was a "keeper" last night for my undying support. He deserves a passion. To be happy. So much of our lives is exhaustion and illness. Him being my caretaker. Cycling is a light in his life that I am eternally grateful for. It keeps him smiling, moving…hopeful and HEALTHY. And he can move. The joy I get from seeing my husband cycling - knowing he can still move even though I can't (not like that) is immeasurable.
MS couldn’t touch us in the end. Financial difficulties that come with illness and all. So much chaos, but being kind, appreciating and just loving each other goes a long way. I get no joy in being right. I get joy in us fixing a problem - whoever was off it doesn't matter. We are grateful to be able to fix it. Know-it-alls have no place in a marriage. I guess they do - but good luck with that.
Life will always be hard. It really is about finding the one you want in your trench. Who do you want fighting beside you - not with you?
If you struggle with your marriage, look deeply at yourself. Fix yourself. No one is perfect. Be who you want them to be. Treat them how you want to be treated. Appreciate, say thank you. It saved us. I was blessed when I met T, like so many of us are, but life still threatens even the most perfect unions. You must be accountable for your part. Keep trying.
Unending love, the kind that lifts you up when you are ill and washes your hair – is possible. Healing marriages is possible. It is. Start with yourself and ask yourself if you say thank you for the little things. That is where I started.
But NO, Tony and I were not always like “this”. We had to learn. Which means, there is hope for all. Some people are worth fighting for.
This is the song that makes me think of my husband. All of us have that one person we'd choose to be trapped with on the last day of this world... think about who yours is <3