Monthly Archives: February 2015

The Scream that isn’t heard – Lupus

Have you ever screamed so loud and high that no sound escapes your mouth?

This has been my reality for years. Pain in muscles and joints, pain in my kidneys, fatigue so extreme that I fight to stay awake and even sleeping for hours doesn’t make it go away. I don’t think anyone really understands what it’s like living with lupus, so I’ll try to explain one last time in hopes someone will listen.

I’m so tired right now, so stretched to my limits in a way that makes me not want to fight anymore. I’ve tried to ask for help, tried to break down everything to make it easier. They’ll tell me to just be positive. They look at me and think, she’s just depressed. And I try to tell them I need rest and help and medical care, but no one is listening.

So then, I want to stop talking. I want to curl into a ball of nothingness and waste away because I’m so tired of talking with no one listening.

This isn’t about looking at the brighter side. And I can’t even begin to fucking tell you how tired I am of hearing that. How unheard I feel everytime someone says it. I spent most of my life looking for every shred of hope in impossible situations. And I’m especially good at find it, especially good at flipping a situation on its head and pulling hope out of the ass end of nowhere, so this isn’t that.

This is waking every single day to joint pain that makes me fall to my knees. It’s muscle pain so severe I can’t lift our four year old most days. It’s fatigue so intense I find every way, including pinching myself and unwise amounts of caffeine, to keep my eyes open.

They think because I have good moments, because I have spurts of determination, because I can smile sometimes and make light and jokes that nothing is really wrong. They think if I just changed the way I look at things that magically I’ll get better, but I won’t and I don’t… and no one understands.

I think often they feel like I’m being difficult, that I’m just depressed, and eventually it’ll pass, but it doesn’t because it won’t because I have lupus. I have an illness that treats my entire body as an enemy, and then attacks it. Warm sunny days won’t make this go away because I won’t be able to stay out in them for long without extreme measures to coat and cover myself. This isn’t about vitamin D deficiencies, although I probably need some.

It’s about lupus, and the fact that I’m done talking to people who are simply waiting for a chance to respond with self-help mantras because they don’t know how to listen or simply don’t want to acknowledge that anything is wrong.

If you’re in any way interested in finding out more check out the video.

Categories: Drive by life | Tags: | 4 Comments

A Special Message of Love

stockvault-yin-yang-grunge-cycle133826

 

Our first year together approaches, and I have a question for you, but doing things quietly has never been my way. So, here goes, my love…

As I made plans, the universe made better ones. It’s like that sometimes in life, the broken paths that feel tragic, only because we don’t know something else is coming, something better and stronger. 

In so many ways, I wasn’t ready for love, not that my ego agreed. It bit at every chance, thinking this might be the right fork. And somehow, they were all the right ones because I ended up here.

In the light of a Sunday afternoon with the kids playing in the background a giggle erupts from the other room, and my heart swells. I know the love there. It’s as certain as the next nightfall and sunrise, ever present and steady, bringing peace to some and balance to others.

In that, I rejoice with one thought — this is love.

Soft, with no less passion, yet flowing with all the possibilities of a life so worth living, and in the last place I expected to find it. Not hidden, not for a moment, only unclear to my eyes because, as every magician knows, the best place to hide something is in plain sight. Sometimes our vision clears enough to get a glimpse behind the wizards current, and I’d had many over the past few years. Through confusion and stubbornness, the ever-patient universe allowed the light to adjust, then shine down in a fiery burst to land smack in the middle of my mind.

She worries sometimes, worries that it’s not enough for me because quiet and reserved is her wheelhouse. But that suits me. In truth, I’m loud enough for both of us. Together we are balance of a yin-yang type.

The tears I’m crying at this very moment are ones of joy and being so thankful for the gift of her in this life we share. Okay, maybe I’m a little nervous, too.

So, come closer now, Beautiful. Before I turn into a blubbering mess, I have one question, a little something I’ve been waiting to ask…

*clears throat, wipes tears, and smiles*

I’ll wear out the words…

Categories: contentment, happiness, heart, love, messages, relationships, the best damn thing | Tags: , | 2 Comments

Why Size Matters.

Women will give coy smiles and giggle, then say, “It’s not about size, it’s how you use it.” But that’s a lie.

Because a heart closed by fear, pessimism, and doubt can’t be used, not fully.

Let’s go Dr. Seuss for a minute with the Grinch.

00 grinch

The dude had serious issues beyond eye twitching and dressing his dog up like a reindeer. Why? Because the Whos down in Whoville were celebrating life. Okay, Christmas, but there’s a bigger picture here. They were happy and he wasn’t, so they weren’t allowed to be happy.

This goes back to heart.

The narrator cleverly inserts: “But I think that the most likely reason of all, may have been that his heart was two sizes too small.”

00 grinch heart

(CSI-like Exhibit A)

Closed or shrunken hearts can happen over time. Let’s face it, life isn’t always happiness and giggles. Cycles of unhealthy relationships are handed down from generation to generation like keepsakes. Moreover, if you’re not willing to participate in the negativity and codependency, then your punishment is withheld affection and love. Yes, love is used as a punishment in these dynamics.

But people have the power to smash the crap out of those cycles and make different choices.

I’ve written it before but it bears repeating:

The heart is like a universe, incomprehensibly vast and continually growing to accept new situations and people; never filling up because it’s endless.

While it can’t be filled, it can close off or get smaller.

How to stop it?

Well, there’s no ultimate manifesto of love, but I have a few ideas that are working for me.

  1. Only allow positive things and people in. This isn’t a call to arms to block out everyone who might be having a bad day, but it is a suggestion to love people who are chronically negative from a distance.
  2. Watch your words. Pay close attention to what you say, think, and write. If the majority of it isn’t positive, then stop and change it. Bring your thoughts and words back to hope. Evaluate the negativity, then turn it around to see the lesson in a situation or how to change it altogether.
  3. Make a conscious choice to take responsibility for your own personal happiness. Do, say, live the things that make you happy, and stop doing the things that don’t.
  4. Walk away. If someone is committed in a Grinch-like way to arguments, fighting, gossip, and misunderstanding everything you say, then pull up stakes. Life isn’t a battle. You don’t have to prove a point or argue one. Save your sanity and peace, then slip out the backdoor.
  5. While I’m on the subject of gossip… Don’t.  Gossip is an ugly habit and hurts people. Period. So embrace the love and turn the conversation to how your kid picked every flower in the garden because he thought it was Mother’s Day, then destroyed the kitchen making soggy cereal and glitter laden cards. Everyone will chuckle, and you’ll all feel better.
  6. Be honest about what you want, who you are, and do it unapologetically. Again, not a screw you to the world. A simple to say: this is what I want for my life, and I respect what you want for yours. Sometimes, people don’t want the same things. Sometimes people choose to accept who you are and sometimes they don’t. The ones who support, understand, and respect your choices (and you) will stick around. The others will lose interest and find something or someone else to occupy their time. Not good or bad, not a statement about your worth or theirs, but a sincere realization that not everyone will get you. They don’t have to because it’s not their life.
  7. Control is an illusion, so don’t waste time or energy trying to master it. We have control over one thing – our choices. Not the consequences, not other people, not anything else that exists in the world. Only the choices we make. Take your time, choose as wisely as possible, then learn from everything that happens afterwards. If it gets totally screwed up, then make a different choice next time, but don’t wallow in what ifs. That’s a quick road to depression, anxiety, and crippling fear. This is 40 plus years speaking here. Again, save your sanity.
  8. Life is an adventure, so live it. Sometimes I go out and enjoy the world, but most days I’m perfectly content with doing that in my own backyard. If skydiving is your adventure, then do it. Just don’t ask me to go with you. I don’t jump out of perfectly good planes.
  9. Peace is an active pursuit, find it daily. Whether you’re into meditation or vegging to music or driving dirt roads with the windows down, take a moment each day to actively pursue things that put your soul at ease. Peace isn’t going to come find you, you have to search it out. As you remove negativity from your life, it’ll get easier to find, but it still takes conscious effort to live until it’s a natural state of being.
  10.  Remember your heart is a universe and big enough to love the entire world. Do you have time to love the entire world? Probably not, but my point is – just like when a new baby is born – hearts and families expand to accommodate one more person. It’ll continue to do it for the rest of your life. New family members, friends, and even strangers on the street, there’s no end to how many people you can love. And just like the Grinch’s heart, yours will grow and grow until it’s nearly bursting out of your chest. But don’t worry, it won’t pop or anything. It’s custom made by some cosmic force to be pliable and stretchy.

This is you on love, only maybe not so green and minus the Santa suit. 🙂

00 grinch heart grows

 (CSI-Like Exhibit B)

Is this going to change the world?

Maybe, maybe not.

Can it change your world?

Well, that’s for you to decide. All I know for certain is I’ve been traveling this path for a while and slowly putting these into practice. Sometimes I really suck at it, but I’m getting better. And in the process, I’m living happiness and peace in a way I never have before. When I screw up, I make a different choice. When things start flowing, I keep doing them. Things like lying in the backyard and hanging with my family while watching the sun set. If that isn’t pure love and happiness, then I don’t know what is.

Categories: allowing the positive, conscious choices, happiness, heart, honesty, journey, life, love, patience, peace, relationships, self reflection, spirituality, the next step, what matters to you, what once was | Tags: | 1 Comment

Believe

butterfly on flowers

 

She told me to wish on a star because it will make my wish come true. Somewhere between stardust and sunbeams when dreams feel so real you can smell the rain, I almost believe. Then sleep falls from my eyes, and I’m hit with the starkness of reality.

She said that grown-ups can’t be happy because they’ve forgotten how to dream. In the fervor of her argument when her tiny hands fly up in exasperation while conviction invades every word, I want to believe. Then it’s time to come in from the chill, and I’m hit with the emptiness of silence.

She gave up on the little lost boy in a green hat when she turned seven. While I watch her scan the twinkling horizon for a hint of fairy dust in hopes that some dreams are worth holding on to, I begin to believe. Then her head drops along with those beautiful blue eyes, and I’m hit by tiny fragments of shattered hope.

She’ll tell you the greatest gift I ever gave her was life. Between the smiles and tears, hopes and fears, lost dreams and found things when I’m sure all strength is gone, I do believe.

I believe in her… and that is enough to make me believe in almost anything.

Is it possible to believe in something or someone so much that we live in the illusion of what or who they might become until reality catches up with our dreams?

In both writing and life I had embraced a type of idealism that dissuaded the possibility of anything save goodness and the best version of people. After spending far too much time in the bitter slice of what others accepted as real, I’ve chosen to return to a life that might resemble illusion or a dream land to those on the outside. As with my current relationship, this is a weighed and balanced choice because the purity of child-like innocence accepts the actuality of magic where reality cannot.

I believe in people, and their ability to do magical and creative and kind things in this world. What do you believe in?

Categories: angels on earth, belief, childhood, choosing faith, Drive by life, innocence, Rob Thomas, the universes we create | Tags: , , , | 2 Comments

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