Pulling out the party hats.

Sitting on the damp chair, feeling a breeze blowing through my hair, looking at the drops of petals scattered on the table freshly fallen from the storm last night.  Feeling the fog of being up for hours during the night, leading to me sleeping until 9 AM instead of my normal 6 AM wake up call. Unable to fully wrap my head around things this morning, and suddenly like the lightning that blew out our electricity last night, a thought strikes me. 

I survived a crisis last night without anger.  

If you've followed my blog for sometime, or me on any social media outlet, you'll know that anger is my emotion of choice.  Most of us have an emotion that overwhelms the other emotions.  For example, when I was sad about Steve's diagnosis I in turn got mad at everyone around me, because I couldn't process the sadness properly.

Of course after years of inner work I am proud of how I handle my emotions most days, but crisis is always the true test.  Here's a view into how I was able to do crisis management.

My sleep is so light these days, the sudden jolt of the power turning off, had me jump out of bed.  Reaching for my glasses, I hear Steve's vent and oxygen machine start to beep waking Steve up to discover the power was out.  As he's typing on the tobii, I'm immediately off to the kitchen to grab O2 tanks and get him comfortable.  As I'm on the phone with the power company, I feel the tears coming down my face. 

Sniffling, I inform the guy on the phone, how we are dependent on the vent and O2 and he replies, "It's a rather large outage, call back in an hour and we can give you more details on the length it will be out."  

Hanging up, I give into the fear, and cry it out.  For a minute fully feeling the fear and releasing it, which apparently happens with tears no matter the emotion these days.  Taking a deep breath before walking into the room, "Okay if you can get settled to sleep, I'll be up and I'll wake you up if we need a back up plan, we have at least 5 hours of reliable life here." 

His anxiety was overwhelming his eyes, so as he frantically was darting from letter to letter, the tobii was spelling out nothing but jibberish fear made up words.  "Do you need some anxiety?" I ask looking at his bright red face.

One blink, yes.

As I'm pushing the crushed meds through his feeding tube I say, "Look we will be okay no matter what happens, whether it's home a few hours in the dark, or getting emergency help if it's longer than 5 hours," really feeling the words, Steve slowly drifted back to sleep.

Crouching down in the hallway with a flashlight pointed at a journal I decided to write while I waited it out.  The anxiety was still there, as I had to pace a few times to release it, but it didn't lead to anger. 

Our last few crisis situations, have been hospital visits, where I'm in what I call caregiver back up mode, to where I completely function without truly being present. This being the first non health related crisis in some time, I was fully there.  I just sat and waited, as I was about to call the company after a little over two hours without power, the first ring was interrupted by the thump of the power turning back on.  

Feeling so overwhelmed with gratitude I walk into a wide awake smiling Steve.  Hooking him back up to his machines and turning on his sleeping movie, I fall right to sleep as soon as my head hit the pillow.  Sitting here waiting for a delayed wound care to let him sleep off his missed sleep, I feel a sense of accomplishment.  I used to feel silly to pause and recognize being able to control my emotions.  In my mind I would think, 'Well, I should just naturally do that, so what am I celebrating?' 

These days, however, I'll celebrate it all.  Because truth is we should be celebrating this stuff.  If I've learned anything in this almost 32 years, it's that celebrating the little things, leads up to celebrating massive things.  It should all be celebrated.  So today i'll be in celebration of the blessings of electricity, a diligent company who worked hard in that storm last night to give us power, and for my crisis management skills kicking in last night.

What are you celebrating today? :)  

Messy Flowy Truths

I'm sure most of you reading this, know by now how much time we spend at home.  This past year I've been blessed with these waves of inspiration to tackle parts of the house and totally revamp them. It's sort of blissful when I'm in the wave and for some time after.  Then I rest, reset, make some money for the next transformation (right), & move to the next space. 

I've learned a deeply meaningful lesson in creating a bunch of sacred spaces in every inch of our house.  It's that what you surround yourself with matters.  Very much so.  I've always been messy, and embraced it.  I make messy art, messy weavings, I have messy hair, messy style, messy, messy, messy.  I believe in embracing the imperfections of messy living.  However, there is something to that feeling of being surrounded by too much mess. My free flowing messy ways in this chaotic house day in and day out, began to transform into hot mess.

If you've spent anytime with me in the last 5 years, you will have heard me describe myself, our life, our house, everything as a hot mess.  Well, in an effort to loose the hot mess, I hear by solemnly swear that yesterday will be the last time I refer to myself as that.  Well, at least I solemnly swear that I'll try. ;)  

I've been living in a sort of self fulfilling prophecy with myself, and the more I awaken to the truth, the more I get these waves to make our spaces true to us, but not chaotic.  Life will always be a mess because that's what life is, but it's a beautiful mess much like I've learned to turn my art into, and not a chaotic mess. 

As I learn the balance of adult responsibility, care giving, self care, and fun, and the art of tidying up (the book really does inspire some serious action I recommend it) I have learned that life is truly your surroundings.  Between the people, decorations, clutter, excess, balance, music, food, TV, books, etc. What you ingest on a daily basis, whether it be plain white walls or inspired, meaningful art covered walls, or it be, fast food for meals or real food cooked infused with love, whether it's relationships that nurture or drain you; you will see how much these outside factors are shaping your life. 

Take control.  If you are feeling uninspired, or overwhelmed, or in a state of hot mess express; take a look at your surroundings.  What are you ingesting?  Look I consider it a blessing that I'm able to write a blog like this.  Our eyes are being opened up to the extreme poverty and suffering happening around the world.  It's a blessing I even have a home to be revamping.  It may have it's many old home problems, but it keeps Steve and I safe and healthy.  I'm so thankful and for that reason I'm also very conscious of my impact when revamping my spaces.  Everything you could want already exists, plus the character and charm of antique pieces are so much more meaningful than some mass produced woopty doo made in some factory somewhere, that you see in thousands of other homes probably with the same vase and floral arrangement.  Also, if you're going to get rid of something donate, or sit it in your garage for years and years until you finally get around to donating it. *cough, not calling myself out or anything. ;) 

Choose your surroundings, and be mindful about the impact your every choice makes.  That's been my biggest lesson to a life that feels balanced, meaningful, and happy.  People are always asking why I'm so happy?  Here's just 1 of the many reasons.  That, along with, I'm healthy, able bodied, I have a voice, I can breathe on my own, I have food to eat today, oh and tomorrow, I have electricity, I am growing food, people care about me, flowers exist, so do dogs, birds, squirrels, Steve, Steve, Steve, okay....you get the point. 

perspective

I used to dread Monday and Thursday mornings.  It seemed no matter how hard I would try, I would find myself unable to sleep well the night before, and during Steve's bath I would be in the moment trying to absorb some of the pain from Steve, that by the end of the 40 minutes I would feel so sick that I would need to lie down.  

This happened for months, I would try to meditate the night and morning before to be in the right space, I would actively seek the positive to try to change my attitude on it; I tried all my tricks on turning my negative reaction around, but nothing seemed to help ease the dreaded bath times.  Things of course got worse before they got better...

"Did you see this sore back here?"  Monica asked during Steve's bath one slow moving day in April.  

"No?" I'm immediately concerned she never has me look at his booty,  "Here can you come hold him so I can look."  

My heart sinks.  That's easily a stage 4, I think to myself.  She can tell by the look on my face, that I'm concerned.  As the reality sinks in, and several people are added to the list of people looking at my husbands butt, while I'm standing beside them, grows.  Actively making a plan of wound care 5 days a week.  

"I won't live through this," Steve says seriously concerned.  

'He might be right,' I'm thinking trying to come up with the right words.  "Yeah babe it is going to take all you have, but if you want to you can do this.  Remember what all you've overcome thus far.  You can do this."  Really believing the words as they were coming out.  "Plus who knows maybe all this moving will loosen up some junk in those lungs, and get your body used to moving."  We both smile.  

Perspective change. 

Each wound care/turn after this began a little easier, and a little less dreadful.  The wound was real, the pain was real, the time and energy we would be spending on wound care was real, all very real very heavy.  However, we started making it through, without falling apart because instead of seeing this as, "It's so awful I have to move him so much," "It's not fair he has to go through this," or "man my back hurts from doing two days of this in a row."  It was now, "Wow look how much your lungs are allowing you to clear," "Your hips just bent in a way they haven't done in 3 years," & "That went really well actually..."  

Changing our perspective of the reality that really we weren't going to change.  Wounds take so long to heal, it's not like we could just trade this reality for a new one.  We could have continued to dread wound care and baths that we were doing 5 days a week and now do only 3, but that's not the life either of us had in mind for ourselves.

Writing this after a 45 minute bath and wound care session, I feel grateful.  Grateful for another chance to help send healing love into Steve's wound while I cleaned it, put my love infused magical cream, and bandaged him up; all while laughing and chatting with my nurse aide, because Steve was laying on his side, with manageable amounts of pain, instead of inconsolable like he once was with moving.  

Suddenly wound care is another thing we do with intentions of healing, and it's not dreadful.  It's not a picnic of course, but it's manageable.  It doesn't make me sick and it certainly doesn't ruin Steve's day anymore.  In fact on off days, Steve wants rearranged.  Not in over a year would Steve allow you to move him if he didn't absolutely need it.  

With that perspective change, this wound became our new norm without destroying us.  In fact, it only made us stronger, and much much more patient people.  

If you're struggling with something in life, try a shift in perspective.  Trust me, it can change any situation.  Any. 

In the shadow

And when you're basking in that light

and all your good features shine

All the darkness is out of sight

Because that light is so divine

The real is hidden in the shadows

That people don't look close enough to see

The real you that no one but you knows

The real you, who you feel you can't just be

Then someone comes along

and looks at you just right

Seeing all the weak and strong

and all the dark and bright

They tell you they love you, enough that it shows

They open your heart to the way they see

that even in the shadows 

Lies a beautiful me.  

*******

Today I wanted to share a poem I wrote about Steve finding beauty in my shadows.  It's a new thing for me to share poems, even though I write a few a week.  As a kid I wrote them all the time, and would beam with joy when my mom would get them published.  Somewhere along the way I allowed people to convince me that I wasn't good enough to write poems.  

I'm sharing this because it makes me vulnerable, and in order to keep growing and expanding, I need to keep sharing.  Stay open, stay raw, stay me.  

Also, sharing this because I took a photo in my garden that immediately reminded me of this poem, so i'll leave you with this, and the photo. 

Like a lion I roar....only after I release.

This blog was 5 different very poorly written blogs, before it became this one today.  I would write a few crap sentences and look down at the clock ticking away in the bottom right corner of the screen. I couldn't believe it, I was sitting here for a full hour, writing garbage sentence after garbage sentence.

After walking a few laps around my yard, trying to take in new scenery hoping to change the energy I was feeling; as I sit down to type something, that I was sure would be more advanced than a kindergarten sentence, I hear "I'm up" through the monitor. 

As I walk in the room making eye contact with Steve, I immediately start releasing all the pent up feelings in tears.  The frustration, lack of inspiration, the pent up energy, the disappointment, the claustrophobia, the.....all of it.  Most of it pouring out in incoherent words and run on sentences. As I was done, my tear stained eyes looked at Steve's who's were darting across his tobii writing me words to help me feel better.  

After 20 minutes of good exchanges and our morning routine, I walked back outside to sit and blog. I look at the screen and read the words I had managed to type earlier.  I had typed all about the new moon in Leo and letting your inner fiery roar out, and I start laughing.  Much like you see women acting out a full emotional break down on TV.  I mean I'm in tears I'm laughing so hard.  Once I catch my breath, I'm able to see it all clearly.

Steve without knowing it was my hero today (he usually is, so this part isn't surprising), with his sweet eyes and presence this morning, I was able to find release.  The release I needed of all the uninspired, frustration I was carrying around.  The release of all the yucky, so that I could go about the rest of my day feeling fresh, hopeful, and even at ease.  

So many times, I'm trying to shift my feelings by simply changing my mood to better.  I seek inspiration in the birds, changes of scenery, in words, art, etc; when really I need to release the other emotions before there's space for the new.  Here I was trying to add emotions on top of emotions and instead of anything funneling out, the excess was boiling over.

Release.  How often I forget to release.  Acknowledging and feeling the emotions weren't enough, I needed to release them.  So today as I feel the lightness of the recent release, I was fortunate enough to experience this morning, I want to leave you with a song; by our very talented and dear friend Gareth Asher all about that release.  

What do you need to release?   Let it all go, and if it helps, embrace the Leo energies and release it in a nice big roar.  Then maybe have a chuckle at yourself, because releasing the tense energies, allows room for the play again.  

August = ALS month

This day always reminds me of this day 5 years ago.  I wake up with anxiety just knowing it's August 1st.  You see this day 5 years ago, the first of a few doctors told Steve he had ALS.  No one of course believed this doctor as the appointment went like this.

"What's going on with you?" The doctor asks Steve.

Steve, "I have some weakness that started in my right hand, and has gone to my left, and now I've started falling.  I've been going to the doctor for any one of these symptoms for over a year, and there's never been any answers."

"Sounds like you have ALS, you should schedule an appointment with a specialist." The doctor replied with no emotion.

"What is ALS?" Remember 5 years ago when no one knew what it was.

"Lou Gehrig's disease, here's some doctor recommendations."  That was it.

This was the 3rd doctor Steve had seen in just the short 4 months we had been dating, and despite this doctors poor diagnosing skills, I had that sinking feeling in my stomach he could be right.  This was the first time Steve asked me what I would do if he had ALS.  I remember that night he cooked dinner, and through tears told me that he spent the day researching and it would be awful, that he couldn't ask me to stay.  I told him, not to get ahead of himself.  I told him to stop researching, stop expecting us to have all the answers, and just wait and see, and that I didn't have any plans on leaving.

Of course, Steve my planning obsessed boopy, didn't stop planning.  In fact he went ring shopping with his mom the very next day.   August has always been "my month" I'm a leo, so it's not just one day in this month that's my birthday, it's my birthday month.  Later becoming the month we got engaged and immediately started planning a wedding for just 2 months away.  It's almost no surprise to me that in 2014 it became, ALS month; due to the ice bucket challenge.

ALS being the theme of this month is almost comforting these days.  To know people actually know what ALS is, and to see people care enough about ALS patients they decided to participate in a challenge that went viral.  It was all people talked about the entire month of August 2014, it was surreal, I mean we had people in the community become famous essentially because of an ALS diagnosis.

The ice bucket challenge was an amazing blessing to our community, that we've all been trying to hold onto for dear life.  Of course, the results of the challenge are varying, but the fact that this disease was in the headlines, was hope.  I had a glimmer of, "Steve could get cured."

Do I have that hope today?  No.  I'll be honest, I don't, with all that I've witnessed Steve's body go through, and the political BS in getting clinical trials funded and convincing the FDA for a right to try something proving to add some life, the reality is too clear.

HOWEVER, I think if we could find a way to replicate the money coming in that we did in 2014, to the right source (those wondering that would be ALS TDI) it could happen sooner rather than later.  I believe August 2014 was the best thing that ever happened in the ALS community, and I hope every August generates that kind of money.

Neither Steve & I will be dumping any water on our heads this August, and we plead with all of our followers not to either.  To be honest, water is too scarce for too many people, for us to feel okay with it being used for that.  HOWEVER, we have some things up our sleeves for this month and we will be reminding you all of how important donations are.

Bernie Sanders taught a pretty incredible lesson this election season.  You don't need the big money donations, you need donations in numbers.  Between all of our different social media outlets Steve & I have, we have over 30,000 people following us.  Some of those numbers could be duplicates, but stay with me.  If each of those 30,000 just donated $15 we could raise $450,000!  That is how we fund a cure.  Change that to $20 & we are talking $600,000. That's some serious money from one ALS patients following. Now take that and multiply it by the thousands of ALS patients world wide, and together we can again make a huge difference in this community.

So with our reality being ALS everyday, having others talking about it this month, will be nice. Maybe a nice break from all the sources trying to divide us against each other, and we will see everyone come together.  Because like I keep saying, we are in this together.

My mind is an untalented punk rock band...

They say the brain screams, while the heart whispers; often leaving the brain in charge of making decisions.  However, the moments when you can tune into your heart, and really allow it to do the leading, are the most connected and pure moments you'll experience.  The more you can learn to tap into that space, the louder it will become, and the quieter your mind will be.

A day in the life with my mind:
Alarm. okay, I have to get up and get stuff done. Marlowe snuggles me just as I grab my phone and turn the alarm off. Okay I can cuddle with her for a little bit.  One minute in I grab my phone and begin to check the social media world for the day.  15 minutes later, crap, what am I even looking at?I notice I've been on my phone that long, I jump up.  I begin my morning routine. What time did I schedule wound care today?  What all can I get done before Steve gets up, oh and I can't forget put the clothes in the dryer.  I forgot last night, I hope they aren't mildewed already. I walk out grabbing the yoga mat and cushion, as I roll out the mat, I remember, Oh crap the laundry.  After a quick laundry break I see a bird I want to take a video of...Oh let me feed them...oh let me get a picture of that bug...oh look at the chipmunk....20 minutes later, I'm back on the yoga mat. In downward facing dog, I notice Marlowe scratching her butt on the post, "come here Marlowe."  Poor thing needs scratched.  Crap back to yoga. A very unfocused 20 minutes later I sit on the cushion.  Okay breathe into my heart space and exhale up and out. Suddenly Marlowe starts scratching I wonder if she has fleas? I just put flea medicine on her.  It's probably the heat....It is hot. I can't believe it's record heat temps and people still doubt climate change.  Wonder if I should blog on that this morning. Chime rings, and suddenly I'm back on my breath.  How did i just let my mind go that far. Okay breathe in focus, breathe out, breathe in focus, a bird starts to chirp near me, and I allow it to keep the monkey brain at bay for the remainder of the practice.  As I'm brewing my coffee I try to tidy up the kitchen, starting the dishes, oh let me check the laundry, change laundry, back to dishes, oh I forgot to open that box I got in the mail yesterday, open box, discover medical supplies, unpack them, back to kitchen, oh yeah the dishes.  Oh well coffee's ready I'll get back to those.  Sitting down starring at the black screen, suddenly I have no words.  I open my journal, hoping I had a good thought yesterday that will spark a blog, oh let me check my daily reading book, oh.... Steve's alarm rings. Damnit. "What are you doing awake already?" 

A day in the life of my heart:
Alarm. Get out of bed and turn off alarm, see Marlowe curled up in the bed, putting the phone back on the table, curling with Marlowe.  This dog just fuels me, feel her sending me love.  She seriously was the best gift anyone's ever given me. Thanks Steve. Pause and get up and look at Steve.  Studying his peaceful face and smiling at the little drops of droll in the corners of his mouth. I love seeing him comfortable. Get up and do my morning routine. Okay my face is not what determines my beauty, hey skin you'll clear up soon, I'm giving you all kinds of nourishment.   Spitting out the coconut oil in garbage from oil pulling, I then clean up the bathroom after a few days of not tidying up after routines.  Grabbing a pile of laundry and the 3 glasses of half drank water by the bed I make my way to the kitchen.  Just dropping things off, and grabbing the yoga mat I make my way outside. It feels so good out here, and listen to those birds.  Throwing out my mat to unroll starts the breath pattern immediately.  It flows and with each exhale I begin to loosen up the tight morning muscles. Separate my toes and hold it for 5 full breaths.  Feeling invigorated I sit on the cushion sinking into it, like I just sat on a raft in the water.  The rhythm of the breath opens the heart more, silencing the mind.  The bell rings, wow that was a fast 15 minutes, Namaste. Brewing coffee, I start the laundry, and then do the dishes. I should blog on Steve's wound today. Sitting down in front of the computer letting the words flow.  Finishing up, and jotting some thoughts for tomorrow in my journal, and Steve's alarm rings.  "Good morning boopy!  How are you this morning?  You look handsome." 

Two very different days that are very true to real life, that highly depend on where I'm living my day from.  The reason I wake up so early is to work to get to a place of the heart before Steve wakes up. Thankfully most days I get there, but I still show up everyday, because there's those days where the mind is having a full blown terrible punk rock concert, overshadowing everything in it's path, and it takes practice to stop it.