"I've always spent more time with a smile on my face than not, but the thing is, I don't write about it." ~Robert Smith
This comes up a lot with family. It has been a source of contention for many years.
I suppose my family, and others, want me to smile on the page as much as they do in pictures. Understandably so. In pictures and pages, I think I have mostly been a disappointment to them. I just continue to do what I do, and not give in to what others want me to be. I pray someday they will understand.
I have learned in my forty years, to do the next right thing, to be true to myself, courageously true, and to put my head down and keep working. And to be kind. I can say now, I am a thoughtful and kind person. So, I don't care too much what people say anymore. BUT, every now and then, someone says it when they catch me and tell me my words are depressing, and I'm like ouchie. Some things, ya know, feel free to keep to yourself? I keep going.
Head down Jamie. Just keep writing.
The way I see it, an authentic self acknowledges a world of both positives and negatives. When I am happy, my smiles acknowledge my happiness. My presence, my laughter, my dancing (sometimes figuratively, many ways to dance). Sometimes if I can't move well from the MS/spinal progression, happy is a friend watching something utterly ridiculous next to me in my room. I don't think about it much. We laugh. We are silly. We create art. I have many visitors (well the same handful, repetitively). We laugh and talk. It's acknowledged. Not necessarily written. Despite me being laid up, I also don't consider those moments depressing. They are funny and beautiful, and noted.
Sometimes I catch a moment between us that is still and sacred and I will put it to page, but I won't necessarily publish it. Not yet. It's just a verbal picture for me to keep and look at sometimes.
The sadder stuff, has always, very authentically, went to pages that get seen. But that in no way makes me depressing. YOU may take it as depressing, but that is not on me, or the whole of me. If it does depress you to the point of you needing to tell me, I urge you to live a fuller life; one that is aware of true suffering and the fucking chaos that is taking place all over the world. That, and perhaps stop by for tea? To see what I am like? The entire picture. These snippets of posts and words, all fragmented in different places and contexts, are not ME. Not all of me. Just snippets in different contexts.
There is a very depressing world out there full of violence and unfathomables. It is a violent type of depressing. One that I try my best to lend myself to, to stop. But the sadness in these MS pages is a softer sadness. Not even completely sad, as much as pensive. I am very pensive of this hand that I was dealt, and I am aware of how I play it. I am serious about how I play it out. I am also aware of others' hands and how they are played. I am just human. I pay attention.
There are others watching, especially children. It is important I play it correctly. That's not depressing, that's my duty. Call that pretentious, that is fine. But I know what my duties are. I consider it arrogant when others pretend to know everything about my calling in life.
If they don't see it, it must not exist. I shake my head in disbelief and let people be who they choose, arrogant is sometimes one of those choices. So be it. I keep going.
Writing about the sadder things is just how I have always dealt with sadness. Since third grade and my first journal. Back then, it seemed to me like a formula. If I wrote it out, I'd figure it out. Now, life has expanded, illness has permeated life. As well as children and my long-time partner and husband. My FRIENDS. My world is much bigger. The love runs so much deeper, and every question is much more complicated. Especially when it comes to illness, which this blog, in particular, is about.
The universe, and my own world, are bigger than the journal I kept hidden, with its tiny lock-and-key, in third grade. And I don't dare to pretend to have any formulas. I leave that for my scientists and atheist friends. I also, don't lock my journal up anymore - there's no shame. My writing goes out to the world. Most of it anyway.
Now I just write the sadder things out, explore angles and welcome anyone into the conversation. In some ways I do hope to help others with my writing about such things. But more often than not, people write to me, and they lend their thoughts that bring me closer to an answer or understanding of some sort.
I guess I tend to write on a page about the sadder things that need to be addressed, and I typically sing and get playful when I am happy. I have a friend who tells me to sing "Let It Go" from Frozen when I worry about this one hurt in my life. It doesn't work for me like it does for her. I have tried to sing it on the top of my lungs, alone and doing the dishes. In the backyard with my plants. It doesn't work. I guess singing IS my happy reaction. That is how my authentic self works that out.
Also people tend to constantly write about the "happy" things. I want people to understand it is okay to explore the sad. It does demand to be felt in order to heal. I call about 75% of all the shiny-happy stuff "humble bragging". Most people want us to believe they are living the lives they wanted and are happy. They express this through pictures of fenced in, white-picket houses and shiny gas-guzzling cars etc. To the unwell, that is just crap and worthless. I am not sure what we learn from those experiences, or THINGS. I do know, people struggling with illness need some fucking honesty. I won't insult the ill.
But to THAT person. No, you are wrong. I am constantly in a state of wondering what life is about, what is beyond life, how that, or people pretending to know, affect the world we live in while living my private life - which is a happy one, even when sick. We are a strange crew, a funny crew. I love what Tony and I, and our friends, have made. We are unabashedly honest by nature, we handle each others' honesties like we are carrying glass. We carry these fragile gifts to the grave. When we are really cool, we shine them up for each other. We try to make the person smile while bearing some of their weight.
So, the happier, private moments are not for publishing yet. Many are, however, in the novel that is not yet ready for publishing. Questions about MS and living within illness, well that is a responsibility for me to share to further awareness. To, hopefully, bring people out of the darkness and isolation and the dangers that come with it. There's no shame. You can speak honestly here.
My typical self, is the most sociable person online. My world is big. And yet, in private, I have a handful of trusted confidants. I am much more introverted. In many ways I wear my heart on my sleeve, like my faith, but in others, life and its painful falls have taught me to be more cautious. I always cover my mouth when I laugh, while shyly looking down. I curse like a truck-driver, and I love to say the most inappropriate things or questions to see how my friends react. They are graceful and honest. They can handle my strange curiosities. I always have a book in my hand and I will take it everywhere with me before I take a purse, that and lipstick. I love taking pictures and the smell of cigarettes.
And above all, I fall in love with everything. Everything. Most people run around hating everything. That's not me. I find everything intriguing and once I understand it on some level, I want to go deeper. It is a curse.
Songs and music and art and the unexpected flowers out back that end up being poison-ivy-ridden. The swing that hangs from a way-old oak. The thrill on my children's faces as they fly across the landscape, holding to that rope like they once did to my legs when they were young and scared. They don't hide from the world anymore, they fly across it, taking dares, risking falls. I LOVE that my legs have been replaced with prickly ropes that callous their innocent skin. Comic books.
I'm a smidge eccentric as well, I suppose. The comic books are for me.
My friends, how fiercely I love my friends. Meeting them at the train. Sitting beside them in the Florida room, or some dimly lit bar. The bunnies in the backyard. The smell of my home that comes from the people and the love I have filled it up with. I love them all. That is my biggest curse, by the way. The more you love, the more you risk. I worry about them.
You know, we are taught when we are younger that romantic love is to be sought, found, and the story just kind of peeters out from there. It doesn't. Love comes in so many forms and shapes, long after you find romantic love. Romantic is just one type, reserved for one person. It is a bit part in some ways and yet huge in that I share my life with my romantic partner, AND he is the one person that I share all my layers and types of love with.
But love continues to grow and be sought after, long after you find romantic love. I find love (deeply) in faith, in people, and in nature. My friends are sacred and few, in the flesh. I have friends all over the world that I send correspondences with, they are very dear to me. I have about five people, that show up - in phone calls, and emails, and social media, at the train station, at my bedside, when it is hard for me to walk. Consummated in pure ways. Vows of friendship and loyalty. Encouragement and hand-holding. Prayer. I fall in love, more and more, everyday, with everything BECAUSE of them.
The friend that takes my arm and walks with me down the street, arm-in-arm. Conversing in silence. The friend who is constantly sending me their scripts to read and think about. The friend that lets me look at a painting in its kinder years, long before she will ever show the world. I inhale the fumes and feel dizzy and privileged. It is the pastor that meets me back the back door, in the rain at dusk, to pray because he knows I am scared to death of what I am walking into, even though it will change my wildest dreams for the better.
Secret art shared between friends and dreams that inspire mine. There is so much to fall in love with. I fall in love with everything because of them I suppose. That is my curse. Being sad sometimes, or talking about sadder things, in no way makes ME depressing. I've just always read that as real and as one small bit of who I am. You just don't know about the bigger things. It doesn't mean they aren't there.
I am someone you can touch and feel. I am not an image or a fantasy. I am as real as you. Touch me. Feel. Yes, I will share my sadness to help pull others out of theirs. I want them to know it is okay to feel. It demands to be felt (The Fault in Our Stars). I agree. So I put it out there to help. But know I feel it and move on. I always, always let it teach me. I know it is there for a reason. I let it lead me, make me, shape me, and move forward.
Then it changes from sadness, to progress. Moving forward, with whatever we have been dealt, is the point of everything I write. Don't get tripped over the sadness. That is the problem with most people. Grab an arm, steady yourself with a good friend, and walk through that puddle of sadness. Forward. Together.
Yes, so in the words of Robert Smith, "I've always spent more time with a smile on my face than not, but the thing is, I don't write about it." Not on this blog anyway.
