The ugly truth about MY multiple sclerosis is summed up in this picture. My husband is a fit, sexy, cyclist and his life is about riding. And me. And us. He has a pair of compression socks to keep his feet and the blood moving. I like the name. Compress all of this into one, tidy, WELL, FIT, compartment.
Some things don't fit into neat compartments. Like my feet. If they are working (yours)...kiss them for me. My feet get so cold, to the bone, while sweating. Ten tiny frostbitten little volcanoes. It HURTS. He rubs one foot, as I squeeze the other. That sounds dirty. But it's not. It's just ugly dirty. Not sexy dirty.
I had to put on his beat up, ugly (albeit clean) white compression socks. Little balled up pieces of fabric on the toes that hang off. I look at the little orbs and feel reduced to them, that size and purpose, while he tries so hard to make this work. He's a 12.5. I'm a size 6. But oh my lordy lord they feel so good. They fit, enough.
It took us twenty minutes to cover those tiny, sad appendages. They look so delicate despite all that hard work. It was like putting lycra on over a very long, wet leg. I kept pouring baking soda on them. To make me feel better. To take the clammy away.
To make my fucking feet choose a side - are you hot or cold? Choose a side. Just speak! I hate wet and I hate the pain. It's inarticulate. Wet and cold. Sweat and heat. Which the fuck is it? spins and repeats. But it never does speak to me! I'm so fucking tired of confusion. It's like even my feet have emotions and are eternally confused.
My feet don't know what they mean anymore. There's nothing to say. Some things will never make sense that way. That's why I don't question MS (most of the time). I have to make peace with that. Some things will never make sense. Stop trying.
The foot thing, it sounds so small. But it is constant and just like anything that's slightly negative, but CONSTANT, it drives you fucking crazy. This could be a metaphor for so much. I want my feet to take a side, and I want the people I love to take a side. Stop playing all sides. You can't do it. Everyone just ends up hurt.
Maybe the dirty truth isn't that I'm this desperate to heal my feet - I am a vain girl, yes - but it's more than this. It's more than my confused feet and that kind of pain.
It's just what it symbolizes. Tony helped me put the compression socks on. He stayed and pulled and pushed with me, sweating and grabbing and trying to hold on. That's been our lives for almost ten years now. But the others ( I mean people), they just let go. They are slippery - so easily manipulated from side to side when they should be bound to the blood that has always loved and served them. They let me, making my MS into a hopeful thing, fodder for gossip - I was trying to make them proud. They just laughed at loud. To my face. (I also had to do it to survive and not burden them, and I had to do it for my babies who very well might get this from me - try trying on that type of GUILT. You'll spend half your life in a fitting room crying).
I finally picked a side. I chose MY kids. I had to. I heard all the words they said about the little ones who were born to... love them. Unconditionally. The kids are true because despite hearing all that, they still do. Love. Everyone is ENOUGH. They are their legacy, their blood. And let's not forget so much smarter than us.
But that's over. Let's not focus on what was. He is here. He's wrestling with these socks with me. He refuses to leave. I remember when I used to push him away. "Go. Save yourself. Please...just go away."
"No Mama, stay. Love doesn't work, or walk, that way." He's the only person who meant it, and stayed.
Love picks a side. It stays and it wrestles, even though it can't touch the pain.That pains me so much to see the helplessness in his eyes. The creases on his face. All the places he can't touch or fix inside. Of me. He never stops trying. And still, he chose a side. He chose to serve me and not give in to MS...or the bullshit. OR, the fact, he will never, ever, be able to fix it.
This is love. It's not my face framed in perfect lighting, skinny dipping in a hidden pond, somewhere beyond the moonlight. Although we had all of that in its time and place. We still do. It's him, and the sun rising, while desperately trying to help me to pull those socks higher. The gratitude on my face. To offer me relief. A relief that will always be physically incomplete, and still, so fucking emotional.
I woke wrapped up in my husband. Fidgeting. Stretching desperately. Trying to regulate. I fell asleep in his arms again, counting the freckles on his wrist, leading to his hand that cradled his face. I memorized every trace. Maps of his skin. I am praying this disease can never erase from my memory. He is all I'll ever need to know now...that and how our children grow. In bed, sleepy head, I'm mapping his skin, I said, "Thank you." He asked, stunned with sleepy hair, "for what...?.
"For everything, for all of it."
He said I was welcome and he kissed me. And together we embarked on THIS sock destiny? It was so dumb, but it showed him for all he is - love. Putting on a pair of really ugly sucks. For twenty minutes. That's grace. Give thanks for grace. That it was sent, and spent, on you because you were more than enough. That's what the universe does with love. It spends it, on you. The trick is, you MUST TRUST it to. It's just delivered in packaging you aren't used to. Don't be fooled by marketing. Let them be fools to you.
I'm not sure what you are looking for. We run wild as kids thinking we were born to be rockstars, celebrities, adored. So much more than we feel. I never felt anything more than lost, but I treasured every rooftop I slept on, every love I've ever had. Not just romantic love. Love is more than sex. More than men. Women. Women taught me that.
But that was a time. It was a place. A season. There's a time when you graduate into more. When that, that Freshman year, is no longer real. The hardest thing you can ever reach for is ... this. There's no moon or sun to guide you. Just your heart, in the darkness, beckoning you to reach and feel. Keep going when you know it is real. There's no path. Trust yourself. Reach for that next level. Walk toward nirvana. Trees, roots, branches. Anything you can grab, to make you steady. There are stages to all of this. Let your love graduate to a higher, more spiritual level. I finish his thoughts. I'd say we've gotten pretty closet nirvana in love. You can too. I believe every human being deserves this because, without it, you aren't totally seeing. By the end of this road, you should have 20/20 vision. That is why true love is so freeing. It is why I pray.
He'd say "Who fucking cares Mama, just get them on and stop the pain," because he worries so much about me. He panics to make sure I'm breathing. But in his calm, he knows, the point of all this is to see. See. And yet it pains me to see his face. I always try to hide mine. The socks are just a farmer's almanac - all the rain it can't stop. Just telling us when? The desperation pops, it's all over his face. He married a feminist, and yet he still believes he's suppose to save me. So I nod, and smile, and try with him again. Out of breath, from socks. But if you have a soul, you know, it's not about the socks. It's so much more.
Someone to love you enough to slip you into this, so tedious and painful. Frantic to fix it. Someone who promised to stay and did it, all the while investing all of themselves, in you. Someone who is so focused on the ugliest parts of you, to make you feel good, for twenty minutes.
Crazy things will envelope you on your journey to "sick". I panic, worrying about breathing, suffocating to death. I've never said that out loud. But there you go. If you must know - it's slowly suffocating to death, trapped in my body. Not able to move, but totally aware. So we have to make lists and sit and talk it over. All the hard things he needs to do for love, if it goes that way. Let your soulmate transition and stay here alone during the wait, until we can be together again? my heart breaks from him. That doesn't sound quite fair. That's not just a lover, it's a best friend. I know where the lesion is, I know the pain my neck and my shoulder are used to feeling, It's so close to my airway. But you can't get stuck on "what if's?" and "somedays". Repeat it. Sing it.
You can't get stuck on "what if's?" and "somedays".
I don't know how this will end, but my lord how my body is leaving me. With MS it is slow. It's always taking something small and new. Over and over again. In a patient way. Until I go. Sometimes I forget this isn't pretend. I will go. And then I feel loved and it hits me - this isn't gonna end well, for anybody that loves me. I feel like loving back will only hurt them. I try to withdraw, to protect them. He pulls me back and refuses. These, he insists, are a bunch of stupid excuses ...not to live.
He beckons me again, to feel this. Relax. Feel him. So I try. For him. For someone who struggles to move, I do a lot of moving for him. His love is always stirring.
Maybe I should be sad, and maybe I am sad, but mostly I just FEEL this. He's getting me to feel again. I trace my belly button, contemplating how I was attached, physically, to our kids. I make him touch it, trace it with me. Life can be magic as much as tragedy. I sit and question proportions.
Feel where I once was connected to our kids baby. Isn't that crazy? I was connected to each of them through my ballon button? I was his bridge to a love he couldn't possibly fathom. Until THIS, our kids. His hands, on my ankles. Something so ugly and pathetic, feels more like a kiss.
That's what you want to shoot for. The rest you cannot control. We didn't write the script. But you can pick the players. Choose the one who make the scariest moments feel like a kiss. Who turn it into pleasure.
Shame on me for ever wanting anything more than this. Oh, and don't forget - sometimes you have to pick a side. You are sick, but it doesn't mean you are a weenie. You have to stand up for what is right. Remember you are DIVINE and your vote counts. I don't let anything slide despite them insisting I'm uptight. Giggling behind my back. The difference between us, I can still sleep at night. I heard the tapes. They hurt, I close my eyes, dismissing them. Because T is with me in this, our faith, our babies, there is someone else we must please at the end of all this. It will never be your "friends" the gossips. Tell them I said "hello" and to "suck it".
I imagine He will ask me one question at the end of all this - did I choose war, or did I kiss?
That and, "How were you gonna rock those socks with your new quicks?"
