Listen!

"Listen. I can’t stress that enough. Listen. 

Diagnosis of EDS can take years. I showed signs and symptoms of it practically from birth. But because no one would listen to me, or believe that my pain was as bad as I said, it took over 10 years to get a diagnosis." -Christina Gooch (EDS advocate and writer)

This weekend I felt I had to yell to be heard when it comes to some of my EDS symptoms. I had to yell to people I shouldn't have to yell at. People I shouldn't have to explain myself over and over and over to. It was difficult and extremely invalidating. It's hard enough to have to fight the medical community to put two and two together to figure shit out, but it's another thing entirely when people you once trusted, once respected, also chime in on how your realism is a downer, and denial is much more optimistic.

Fuck optimism. Pretending I'm fine and ignoring the issue is more acceptable than actually listening to me and giving me the help I'm asking for? Denial runs deep in some circles. Circles I no longer want any part of.

I'm frustrated and I'm fired up.

The Process of Surrender

Today I was reminded that the process of surrender is an ongoing one. That I have to constantly check, re-check, re-re-check, and re-re-re-check myself to keep from letting the stories I tell myself run away with me. That my worst fears are purely imagination, and my energy is better spent on what IS, rather than what ISN'T or what COULD BE. I have been very quick to be harsh with myself, blaming myself for things that really have nothing to do with me, or are completely out of my control. I have been trying to keep on top of my mindfulness practice, but there were certain aspects of it I wasn't fully comfortable with, mostly because there were aspects I didn't fully understand. I had been struggling internally with the notion of surrender and acceptance, and also not feeling like a doormat. I've been struggling to find the balance between decisions and situations I can be an active participant in, and what is just not for me - not mine to worry about, over analyze, or care for.

So I turned to my meditation, feeling emotionally drained as I didn't sleep very much at all last night (another side effect... add it to the list). But being emotionally drained, I also had nothing left to struggle against, as the energy was already spent doing into the meditation. I just breathed and listened.

"We often talk about developing the quality of acceptance in our practice, so I want to clarify that while working with acceptance in life, it doesn't mean refraining from having preferences. If we go out for dinner and there's a mistake on our order, it's okay to address the error with our server and request that it is fixed. If our best friend is always late, it's understandable to request an apology and ask them to improve their punctuality. If we're frustrated with our financial insolvency, it's natural to take steps to improve our credit and increase our savings.
Being mindful doesn't mean accepting everything. It means coming to terms with the circumstances and events over which we have zero control. It means accepting that which we truly can't change: A painful loss, a hurtful parting, or a grim diagnosis. When faced with something unchangeable, a wall we cannot get past, resistance simply doesn't work. In fact, resisting the unchangeable only creates more suffering. When we can't change our reality, difficult as it may be, we must strive to accept it. Wisdom is knowing when to fight and when to surrender. As Sri Chinmoy said, Surrender is a journey from the outer turmoil to the inner peace."

As a person who is moving beyond, and healing from, toxic codependent relationships, this is the part I continue to struggle with - that acceptance doesn't immediately dictate a lack of choice. I can accept someone for who they are, but that doesn't mean I have to accept "less than," or behaviors that hurt my feelings. I can speak up and say when something isn't working for me, or within me, and I've been working on doing just that. I'm working on respectfully expressing when something bothers me, or just doesn't feel right, and I think I'm going about it in a healthy way... because holding things in certainly isn't healthy! It doesn't get me any closer to where I want to be, and it's clear I'm only hurting myself by assuming that I can't express myself. That I can't ask for the things I need. The only one making up rules about what I can and cannot ask for, is me. Granted, I may not like it very much when I get rejected for asking, but the assumption of rejection is purely a made up story in my head. I assume rejection, and in doing so, don't ever even ask.

So today I surrender my assumptions of rejection. I'm letting myself relax into being present in what IS, and giving thanks for the things I do have going right, in my right now. Everything else can wait. I continue to acknowledge my own worth, even when some days it is a struggle. I may not be smarter than everyone else, I may not be the best parent, I may not be the most physically beautiful person, I may not be the most emotionally sound all the time... But I am just me. I am always learning, I am always full of wonder at the world around me, I am always trying to make changes for mindfulness and compassion... and I just try to do better.

I want to do better. Be better.

And I can.

Creating a Monster?

Last night was a rough night. My son and his father were working on an assignment that small boy brought home, that apparently he has been working on for weeks. The assignment was comparing and contrasting two books that he had read in class. He was really struggling with remembering details from the first book and his father was growing increasingly frustrated and angry. I could see them both getting flustered, and at one point his father asked if he had read the book. Small boy said yes. The hairs on the back of my neck stood up and I knew instantly that he wasn't being honest.

My sweet, sensitive, gentle boy was lying to his father.

I stepped in and asked if he had read the book. Again, he said yes. I told him to take a deep breath. He did. I then asked if he had read all the words in the book, or if he had skipped some of it while rushing through. He burst into tears, confessed he didn't read all of it and was too embarrassed and scared of his father being mad at him that he said nothing. After calming him down, we asked him how he was going to fix this problem, since we didn't own the book (and it was nearly 8:00pm). His father made the suggestion of going up to the library to see if the book was there, and if he could read it. The next morning was a late start, so if he could get the book read, he may have time to work on the report before it was due. So that is what we did, and we got it done.

I've been walking around with a lump in my throat since last night. The cycle has started in my son, and I can't let that happen or continue. We talked about being honest, even when you're scared, and he told me it was his father he was worried about. As he was sitting right there for the conversation, it wasn't an appropriate time for me to say "Me too, buddy." Instead we talked about facing our fears and being honest with not only those that we're afraid of disappointing, but also being honest with ourselves.

I'm thankful that my kids are honest with me. I'm so glad that they are comfortable enough to open up to me, even if it takes a little prodding, but... Fuck. I can't help but feel that he is learning this behavior from me. From my fear of opening up and really expressing myself freely - of being honest with everyone about who I am, what I want, where I want my life and future to go. And it's not just from his father... I'm holding so much back from everyone around me, and it comes from a place of fear. Fear of making people angry. Fear of people walking away. Fear of being a disappointment.

So I told my son we would work on honoring our inner truths together. That we would both work on expressing ourselves without fear. He said that sounded like a good idea.

Dream

I don't have many dreams while I sleep anymore. Not that I remember anyways. Sometimes I'll wake with a start, knowing it was due to a dream, but no memory of the actual dream. Then out of the blue I'll have an extremely vivid dream, one where the details are clear, the colors and smells distinct, and my brain says "pay attention."

This morning I woke with the words "no one ever really goes away" on my lips. The dream was about my cat, Pandora. I had gotten a replacement, another one just like her. It WAS her... and an old coworker asked about reincarnation. I admitted to her that it was indeed Pandora and she shoot her head no. "But wouldn't that mean that no one ever really goes away?" She looked so sad. I got choked up too, yet smiled and said, "exactly."

Then I woke up.

No one ever really goes away...

I miss my cat.

Twinge

I found myself really struggling to focus on my meditation and reading today. They were talking about making the best of your time and how to heal after being cut. Yeah yeah yeah... Center myself, breathe deeply, release the negativity, etc. But today I learned that my boss has found my replacement. The twinge of betrayal and disappointment is roaring just a little louder than the gentle voice to calmly let everything go. They found my replacement and she starts June 4th. My boss has said that he'll keep me on a month after she's hired, but I really don't see the point. She and I worked together - she's a rehire. She already has credentials and isn't going to require any type of real training on my end. If anything, she knows more about the systems than I do.

I give it 2 weeks once she starts. 2 weeks tops that they will actually still need me.

I'm happy for them. That they found someone who can hit the ground running, but I'm also pretty hurt in this moment. Again. Still?

I don't even care that I sound whiny and childish in my own head. I'll be over it again in a few minutes, but in this exact moment I'm feeling pissed and disappointment. I knew it was coming... that doesn't mean I have to like it now that it's finally here.

My word of the day was Trust. I just have to trust that things are going to shift in the direction they were meant to go in. Maybe I'm just supposed to say "fuck it" and absolutely kill myself by jumping back into work full time. Sacrifice my body for a little more financial stability and freedom. Maybe I'm supposed to circle back around to the disability claim, and beg my parents for financial support while I appeal. Maybe I'm supposed to just wait and see what happens... Today I don't really know what direction I'm supposed to move in.

And I'm going to give myself the day to feel lost in this moment. To let myself feel the hurt and disappointment and betrayal and sadness and anger and everything else I've been trying to release over time. I'm going to sit with these things on my mind and in my heart, but I'm not going to move in with them. Give them a chance to have their moment, then move on to figuring this shit out.

Breaking Patterns

If I contradict myself, I contradict myself.

I contain multitudes.

-Walt Whitman

We create patterns that others depend on, and then the last thing we ever imagined happens: we grow and change, and then to stay vital we must break the patterns we created.
There is no blame or fault in this. It is commonplace in nature. Watch the ocean and shore do their dance of buildup and crumble and you'll see this happen daily.
We know we are close to this threshold when we hear someone say, "You're not yourself," or "That was out of character for you." What is difficult at this juncture is to resist either complying with how others see us or withholding who we really are.
The challenge, which I don't do well but stay committed to, is to say to those we love, "I am more that I have shown you and more than you are willing to see. Let's work our love and know each other more fully."

After the reading the other day mentioning "being whatever you need as long as you need it" I was feeling pretty upset. The blatant codependency in that statement... I know I am on the right path when reading that statement no longer made me proud to be a good friend - but instead made me cringe with my past willingness to sacrifice myself so freely for "the illusion of devotion." Once I really took some time to think about what that phrase means to me now, I froze with absolute discomfort and fear. Was this author a narcissist too? Talking about the blessing of having good friends, but all the while feeling like they are somehow entitled to the absolute best in others at any given time? My anxiety is already pretty high lately, hormone fueled, but it made me put the book down and take a day off. I still listened to my meditation, but I just felt so uncomfortable with the last reading I couldn't bring myself to pick it up. Then today I cracked it open, just to see what the topic was. Breaking Patterns. 

Oh. That might be exactly what I'm going through right now... I mean, it IS exactly what I'm going through. And like the author, even though I'm not very good at it sometimes, I'm committed to seeing it through. To keep growing, even if it means occasional growing pains from those around me. I can't stunt or stop my growth just because someone else doesn't like the direction I'm growing in. Besides, I can always change my mind and head in yet another direction. 

Friendship

Nothing among human things

has such power to keep our gaze

fixed ever more intensely upon God

than friendship.

-Simone Weil

I have been blessed to have deep friends in my time on Earth. They have been an oasis when my life has turned a desert. They have been a cool river to plunge in when my heart has been on fire. When I was ill, one toweled my head when I couldn't stand without bleeding. Another bowed at me door saying, "I will be whatever you need as long as you need it." Still others have ensured my freedom, and they missed me while I searched for bits of truth that only led me back to them. I have slept in the high lonely wind waiting for God's word. And while it's true - no one can live for you - singing from the peak isn't quite the same as whispering in the center of a circle that has carried you ashore.
Honest friends are doorways to our souls, and loving friends are the grasses that soften the world. It is no mistake that the German root of the word friendship means "place of high safety." This safety opens us up to God. As Cicero said, "A friend is a second self." And as Saint Martin said, "My friends are the beings through whom God loves me."
There can be no greater or simpler ambition than to be a friend. 

The phrase "I will be whatever you need as long as you need it" really struck me. I have said this exact phrase many times to people I considered friends over the years. I've said it and I've meant it, but I also didn't realize the toll it would take on me by doing so. When you willingly offer up that type of support to others, it can leave a void when they no longer need it. When you are no longer needed. Conversely, it can also leave you exhausted for days when friends need more than you have ability to give. I continue to do the best I can, to give as much as I can, but my capabilities are simply just not what they used to be. As someone who once prided themselves as being a "good friend," this is an exceptionally jagged pill to swallow.

Accepting and admitting my physical and emotional limitations is difficult for me. In a sense I feel like I'm letting people down. 

In Release, We Begin

I'm taking a step back. I know that is a pretty vague statement, but I'm feeling a little disconnected from a few key players in my life right now, and for my own sake, I'm taking a step back to catch my breath. I started taking a new medication last week and the side effects have taken me a little off guard. The under current of a headache, the constant nausea, my face breaking out, and a general sense of extreme fragility and vulnerability.

I want to hide and cry. Certain aspects of negativity I could previously absorb and soften in others is now simply overwhelming. My heart hurts.

I know and understand that my current mental state is a direct effect of the medication. It will calm down and even itself out - I will return to "normal" as my body adjusts. But in the meantime I just want to curl up in my bed and have someone pet my hair, cuddle with me, and tell me it will be alright. That everything is going to be alright. And it makes me a little sad that I feel like I have no right, no place, to ask for that. That I have to just suck it up and ride it out alone, because that's how it's "supposed to be."

My reading today was about chasing butterflies. That as children, we chase butterflies, desperate to capture their beauty within our own two hands. And the brief thrill upon actually catching one, the gentle flutter of delicate wings and dancing little legs felt within your hands. But then the realization that while you may hold it within your hands, you can no longer see it - no longer experience its true beauty as you cling to keep possession of it. It's only in opening our hands back up and releasing the butterfly that we are able to appreciate it for what it is. To see it, you have to let it go. "The deepest things beat within, made dark and fearful by our holding, only uplifting the instant we let go."

My meditation focused on humility. It reminded me that "mindfulness can help us soften our attachments to this false sense of self, which allows us to be more flexible, non possessive, and open. There's a Zen adage that says: You gather more flowers with an open hand than a closed fist. This is a perfect illustration of ego vs humility. The ego closes us. Hardens us and separates us. While humility opens us. Softens us and connects us. One of the gifts of this practice is a deeper awareness of how our thoughts and choices are influenced by our sense of self importance. And with that awareness, we can recognize how our identities are based on material status and success, we can acknowledge our selfishness and then challenge it. We can see how our perfectionistic tendencies create suffering, and then cultivate self acceptance. There is simply no progress in this practice, or in this life, without humility. It allows us to see beyond the self, grow, and be free. In the words of Thomas Moore: Humility, that low, sweet root, from which all heavenly virtues shoot."

I need a hug.

Not Needing Approval

I have a young friend who speaks of the time when he reads stories with his daughter as a time that needs no confirmation. There is wisdom in his phrase: a time that needs no confirmation. We all need to touch down with the source of life, again and again, in order to brighten enough to continue. Whether we make our way in by playing or listening to music, by meditating, by painting, or loving, or reading stories to our children, or to our friends' children, or to ourselves - when we close our minds like tired eyes and surrender our hearts like mouth thirsted open, we come upon a common source where nothing need be approved or accepted, where no rejection or criticism need be overcome. The experience itself is all the authority we need.
Interestingly, these renewing moments open precisely when we forget about ourselves. Like horses with blinders we can't quite shake, we sniff out our way until we come upon these deep pools to drink from. And for the moment, we are saved.
In truth, we drink from this great paradox daily; though everyone alive shares this moment we are living right now, no one experiences this moment more directly than you. No one can say what it feels like for you to be alive but you. No one needs permission to be alive, to stay alive, to know the joy of touching your unrepeatable hand to the earth. 

I don't think I have done a good enough job lately of expressing gratitude to the dear ones in my life who allow me to spend time with them. Time that needs no confirmation. Where in that space and time I feel no judgement, rejection, or criticism for arriving exactly as I am in that moment.

Thank you.

Unconditional Love

Unconditional love is not so much about how we receive and endure each other, as it is about the deep vow to never, under any conditions, stop bringing the flawed truth of who we are to each other. -Mark Nepo

 

 

 

Authenticity in Growth

We waste so much energy trying to cover up who we are, when beneath every attitude is the want to be loved, and beneath every anger is a wound to be healed, and beneath every sadness is the fear that there will not be enough time.
When we hesitate in being direct, we unknowingly slip something on, some added layer of protection that keeps us from feeling the world, and often that thin covering is the beginning of a loneliness which, if not put down, diminishes our chances for joy.
It's like wearing gloves every time we touch something, and then, forgetting we chose to put them on, we complain that nothing feels quite real. In this way, our challenge each day is not to get dressed to face the world, but to unglove ourselves so that the doorknob feels cold, and the car handle feels wet, and the kiss good-bye feels like the lips of another being, soft and unrepeatable. 

I feel like I am continuously and progressively making an effort to live the most authentic version of myself. Continuing to shed the layers of protection that keep me from feeling, to experience my truest and most pure sense of self, even when those experiences are unpleasant or hard. Even in my moments of self imposed solitude (and my moments of collateral solitude from others) I am not shying away from the hard work. Every single day I am committed to my readings, my meditations, my angel card contemplation's. Even though it would be so easy to shrink back inside myself and give up, I push myself forward. Building momentum for something more. Something greater.

A Storm is Brewing

I've had a rocky day today. The situation at work escalated a bit, as my coworkers again decided to approach me with disrespect and a shitty ass attitude. Over the course of the last year of working with him, I have had to say something to the boss only a couple other times previously, but this week has gotten bad. His tone with me has been utter shit, I don't deserve it, nor will I tolerate it in the workplace (or anywhere else, really). So I collected up my hurt feelings, sprinkled in a little anger, and called our boss. I let him know how condescending and abrasive my coworker has been this week. "I understand that in his mind I am no longer a member of the team, but last time I checked you were still signing my checks and haven't given me an end date... He needs to be reeled back in before he steamrolls your new interviewee right out the door." He thanked me for the heads up and said that he would talk to him. I also reminded him that teaching my coworker a little compassion could go a long way. "Ask him to put himself in my shoes for a minute. How would he feel, already on the verge of panic trying to figure out what he's going to do next for work, but while also still trying to maintain his current job responsibilities while it lasts - knowing he's being replaced any day and then tack on a nasty ass attitude from your coworker..." He said he felt extremely sorry that he treated me poorly.

There was another issue this week where my coworker threw me under the bus regarding sending clients a worksheet, and who in the household was supposed to complete it. Luckily I keep meeting minutes for all our meetings, and presented both the minutes and a drafted email that my coworker approved, with the verbiage THEY REQUESTED. It really does come in handy to keep documentation. My boss apologized again, told me there was a miscommunication on their part, and that I was indeed doing what was asked of me. He asked me to send him an email to his personal address (as the coworker monitors the bosses work emails very closely) detailing his behavior this week. I told him I would have to send it from my personal email as well, as the coworker also monitors my inbox AND sent email correspondence. There was quite a long pause before he said "I'm sorry, did you just say he monitors your sent emails too?" Yep. I could hear him growing uncomfortable. "Well that seems excessive... I know he likes to be in control of things, but there comes a point you need to trust people a little..."

My boss is a good guy.

My coworker has just been a dick.

Maybe I'm not just experiencing rampaging hormones after all (just kidding, I totally am) but maybe there's more to it. There has been a shift happening within me. I'm not backing down as quickly or as easily as I used to. I'm not going around looking for a fight, but push me enough times and I'm bound to shove back. For a split second, I thought about how the coworker was going to bash me to the boss in retaliation. A split second I felt bad for reaching out to the boss. It didn't last long and I threw that tiniest hesitation right out the window. This is a teachable moment for my coworker... for my boss too. Even for me.

------

My reading today was in reference to finding the center, and talked about the eye of the storm.

Repeatedly we are thrown into the storm and into the center. When in the storm, we are exacerbated by our humanness. When in the center, we are relieved by our spiritual place in the Oneness of things. So to find the center and spread our battered wings is to feel the God within.
Our constant struggle is in living both sides of this paradox. For we cannot get to the center without going through the storm that surrounds it. Yet the storm of human experience can only be endured by knowing what the gull knows: The storm can only be survived from the center. In how we pass each other from storm to center and back - there you'll find the trials and gifts of love. 

I have managed to survive a couple pretty brutal storms already this year. The stronger the storm, the more affirming it is to reach my center, to feel Something Greater working within me. There are more storms on the horizon. Big ones. Nasty ones.

My Lord is my shepherd... and my poncho. We've got this.

Distortion

The messages the past couple days have revolved around depression and distorted views because if it. There have been a couple excerpts that have really gotten my attention. Touching on things I have been avoiding, or trying not to acknowledge, as acknowledgement makes it real.

There was a story of a man visiting his 94 year old grandmother on a beautiful sunny day. He sat with her in the room she lived in and she commented on how gloomy and grey the day was. It was then that he noticed that the window was filthy - hadn't been washed in a year. The old woman chuckled and said "Got a dirty eye, see a dirty world."

It is the same with our minds and hearts. For our very self is the one window we have into this life. And so often, we suffer the mood of a dirty window, believing the brilliant world gray.
Perhaps the purpose of authentic relationship is to help each other keep our minds and hearts clear. Perhaps inner work is the ordinary art of window washing, so that the day is fully the day. 

This definitely had me contemplate my mood the past couple days. I have been viewing things through a dirty eye, distorted visions due to my own negative thoughts.  The idea of authentic relationships also strummed a chord within me. This past week or so I have been recoiling in on myself, feeling sorry for myself and pouting - the emphasis of my negative thoughts has been on "myself." I've been focusing on past resentments, sharing and reliving past traumas, convincing myself that I am somehow failing, and in those failures I will lose the people I care about.

Which brings me to the reading today that opened with "As long as we see what has come to pass as being unfair, we'll be a prisoner of what might have been." I see so many of my beloveds struggling with this lately, as I am struggling with it. Our situations are all very different, but the underlying theme of hurt is a singular one.

I offer what has surprised me in my pain; that life is not fair, but unending in its capacity to change us; that compassion is fair and feeling is just; and that we are not responsible for all that befalls us, only for how we receive it and for how we hold each other up along the way. 

I have not been a very good friend lately. I have been distant and quiet and wrapped up in my own head and heart, licking my past wounds while also fabricating new ones with a dirty eye on the world. Rather than being gentle with myself and offering myself loving kindness as I navigate through some murky waters, I have have been moody and disgruntled and just in a funk. I have let frustration and depression get the better of me.

I'm trying to pull myself back out of it. Take a look at what it coming up in my thoughts and why, and shaking it off. Shaking it off and releasing the negative self talk into the universe. Opening myself back up to relieve the blessings.

While rearranging my room, I came across an old stamped coin. On one side is a dove, soaring in flight. On the other is scripture: And by this we know that He abides in us, by the Spirit He has given us. ~John 3:24 

I have no idea where it came from. It was in a box of knick knacks that I had collected as a little kid. Maybe I bought it in Rome? Maybe some other Divine force is at play and made sure to put it in my hand when I needed it? He abides in me. Even while I've been off pouting in a corner like a sullen little kid, I feel the warmth of His Love dropping around me like a soft blanket.

"There, there, little one. You're so tired that you're getting fussy. Come, have a snack and something to drink and lets have a cuddle to calm you."

A New Setup

As so many things continue to shift and change in me internally, I decided to makes some changes in my physical world as well. My room at my parents house was set up exactly the way my mom wanted it, and it was also the catch all for discarded furniture. There were 2 dressers, 2 desks, a book case, and some other random cabinet, in addition to the bed. It felt cluttered and claustrophobic. The power went out on Friday around 2pm, so I had some time to kill as I was dead in the water for work. So I moved some things around. Completely changed the orientation of my room and work space. Switched my work space to the antique writing desk and got rid of the other desk completely. Moved the bookcase closer to my bed, which I moved into the dormer cove. It feels more like a safe nest, and less exposed. The floor space is more open; it's easier for me to navigate. I've only stubbed my toe once fumbling around in the dark, and that is pretty remarkable. My work space feels more comfortable too. I have a place for my office supplies. My gifted CDs of music are more accessible for me to switch out. My pens are no longer just strewn about. Things have a place, and it just feels less chaotic. There is still a great deal of clutter and stuff to sort through/get rid of, but for now a few pockets of my space feel more like MY space.

I even added some "stuff" to the walls. I made a fairly large fluid painting, but I'm not sure I want to hang it yet. I'm still playing around with color and technique. My favorite one so far is now hung in the cove where my bed is, but it's a tiny painting and feels extremely out of place. I was thinking of mounting my completed paint by number and popping that up on one of the walls too. It's just so barren.

Speaking of barren...

I no longer am. After a glorious 7+ year hiatus from fertility via my IUD, it has finally run out of juice and I have returned to the land of the menstruating. I am not exactly happy about it, but it also makes some of my recent (over) reactions more understandable. As my body has shifted back to producing it's own hormones, I have been left feeling an undertone of depression. Quick tempered, more lethargic, mentally jumping to the worst case scenario, and generally just feeling left out and/or forgotten. In hindsight I could have approached the blowup with my father more appropriately. But maybe an explosive response was what he needed to be shaken out of his haze of my "blissful childhood." But last week I found myself keeping to myself. There were times I wanted to reach out to people, wanted to ask for time, for conversation, for something... but I didn't feel I had a right. Everyone has their own issues going on, and I didn't want to be a bother with my hormonal outbursts of emotional garbage. Instead I folded in on myself and spent a little time with some books, created a new painting, and dug in the dirt with my daughter. I'm still feeling a little fragile, a little left out, but I'm also falling back on my meditations and readings for comfort. Plus I placed an order online for birth control pills that should be arriving any day. Screw this hormonal nonsense. I prefer to be logical and emotionally sound. I almost feel like a flailing teenager with an unrequited crush and it's annoying as hell.

------

I was reminded just now that everything is impermanent. And that even my hormonal mood swings can be met with steady, soft patience from within. Perhaps it really is best that I didn't reach out to anyone while I felt like I was floundering. No one else needs to witness to these moments of instability - mostly because of a fear of being judged and rejected for feeling weak. Sometimes I feel pretty brave in my vulnerability but lately I feel... more reserved. More embarrassed, really. I don't like feeling embarrassed or ashamed for feeling, even when the feelings are exaggerated and not necessarily normal. This has been a practice in letting things come to the forefront, acknowledging them (even acknowledging as irrational), and letting them slip away. It just hasn't been as graceful a process lately.

July 1, 2016

According to the Social Security Administration, the date that I "allegedly" became disabled is July 1, 2016. Well, on my second application anyways.

I had a meeting this morning at SSA where they reviewed my application and asked questions to amend it, so it would make the most sense. Like, why did I go back to work full time after I filed (and was denied) Social Security Disability Benefits in 2014? Well, the government declared I wasn't disabled, and since I "had another hand" I could work in a different field. So I tried. I tried and it didn't quite work out. So in July of 2016 it became evident that I couldn't work full time anymore.

This particular interview was just about my work history and what it is exactly that I do. When I asked about the medical stuff, my case worker said that it would all be reviewed in the next 30 - 60 days, and that they would mail me a letter of determination. She said it can take as long as 6 months if they have a hard time collecting medical records or verifying my employment. I completed all the information online, but there really wasn't a place for me to explain what it is like to live with Ehlers Danlos. All I can put down are the symptoms: chronic dislocations, hypermobility of my joints, fibromyalgic pain, chronic fatigue... But that isn't what living with this is like.

It's waking up every morning and doing a quick assessment to see what may have slipped out of place while I slept, and figuring out how to pop it back before pain registers. Its having to think about every step I take - willing my body to stay put together, concentrating with each step "ankles in, knees in, don't hyper extend, don't roll." Lather, rinse, repeat. It's looking at a basket of laundry and having to guess how much it weighs, and how likely it will be to sublux my wrist and fingers just by picking it up. It's tensing up every time I am near a dog who jumps up, or has a tail or body right at knee level - even when it's my own dog. It's having to explain to nosey clients, cashiers, complete fucking strangers on the street why I have ring splints all over my fingers, and why my hand looks kinda funny. It's having to make sure I don't wack an already broken fused wrist on tables, walls, chairs, doorways because my brain still registers that hand as functional and I literally forget that I can't bend it out of the way and I'm left not only feeling pain, but feeling stupid for not knowing better. Its waking up with tendonitis in my right hand/wrist and not knowing if today is the day that my other hand is going to fall off... That I will no longer be able to type, to drive, to cut my own fucking food...

So I'm a little frustrated today. With the process. With my body. With the unknown variable of what my body will do next to fail me. I never know what is coming, and that is really scary and frustrating sometimes.

May is Ehlers Danlos awareness month... Yay?

I just feel very small and alone in this moment. I'm running out of options and I'm trying to figure out how to provide for myself and my family. It's possible I may not qualify for anything because I'm still married, and that sucks too.

-----------

On a different note, but also somewhat frustrating... I made a couple more fluid paintings yesterday. They were both quite interesting to me, and apparently they gained the attention of my mother. She knows the process. She knows they take weeks to dry. So why she felt compelled to fucking touch one of them and drag her finger down the middle of it is beyond me. It wasn't just a little smudge in the corner... She dragged her finger across it. She admitted to me when I got back from my appointment that she couldn't help herself and she "touched it because it was so pretty..." but it's wet fucking paint... I resisted the urge to snap at her to keep her fingers out of my creative processes, that she had no right to touch it, and she does NOT have permission to meddle in things concerning me. Those thoughts raced through my mind... But I looked at her face, her body language - she looked genuinely sad and embarrassed and I told her I was a little annoyed, but perhaps she should just refrain from touching the canvases without asking first. She said that was fair... and that she was expecting me to be mad.

"Well, you did just single handedly ruin my budding art career, but I'm sure I'll figure something else out since it's now over forever and I'm never going to make another one of these things ever again..."

I laughed it off and she stopped holding her breath. I think she was expecting a similar explosion to the ones I have been dishing out to my father lately.

Not today, Mom. I'm too tired.