Monday, August 29, 2016

powerless to empowered and gangster rap.

So here I sit, same spot, but on a new desk in my little outside writing nook.  I'm listening to the birds chirping, the water falling over the rocks, one of our frogs doing his vocal warm ups, and feeling the breeze blow with a might on my face and bits of the sun coming out on my shoulders.  

So much to say, as I haven't written in a while; so many new epiphanies, so many new challenges, so much.  

So much, has been my phrase of 2016.  I set intentions for that word to be impactful, but I guess without the so much, the impact would be less for sure.  

As most of you who follow us closely enough to be actually reading my blog know, we had a recent hospitalization that didn't have the outcome we had hoped for.  Instead we have another complication to be added to our long list, that I've titled, "Gotta make it work."  We will be making a video with the documentary team this week on all of those details, as it's a bit lengthy to type; but the feeling it's left me with is what I'm going to touch on here.


Powerless is a feeling that I wish upon no one.  Truth is, it's also partially a choice on my part to feel this way.  When I feel powerless, I'm immediately angry.  I then take the power I do have and assert it in negative ways.  Such as screaming at whoever crosses my path, maybe even using a few profanities in there (more like every other word), and definitely not solving any problems, or finding my power.  Instead of having a monumental meltdown and misusing the power I do have, I have discovered a better use of my energy when feeling this way; is to use the power I do have to EMPOWER myself.  

Now it's taking me many times of feeling powerless, miss using the power I have left, and then licking the guilt off of me the next day; to realize that I actually am capable of going through whatever situation makes me feel powerless.  IN FACT: I'm beyond capable.  All I have to do is remind myself I can do it.  It's a simple sentence, but to actually say it with meaning is what's important.  

So when "Shit hits the fan" so to speak (sorry mom), I have to remind myself, that I can choose to scream and yell and get angry at what's making me feel powerless; or I can do the whole put lip stick on, gangster rap, & handle it kind of thing.  

Maybe not the gangster rap, give me some glass animals instead, but I digress.  The important thing is, after 5 years, I have finally realized I'm only powerless IF I CHOOSE to be.  If I take a deep breath and dig deep, I have more power in me than I know what to do with.  It's up to me to properly use it.  

So here I sit empowered to conquer this long list of make it work moments, and to rebuild what's crumbled around me as I've given up my power. If you're reading this feeling powerless, please remember, you HAVE the power.  We all do if we dig deep enough.  

Thursday, August 11, 2016

Unlearn & Relearn & Process & Write & Teach &....

Sorting the wide array of emotions I'm feeling today.   Maybe it was reliving some scary days the past 5 years yesterday, maybe it's how everyday this week I logged onto facebook to find another member of our ALS family has passed, or maybe it was the extra rough wound care this morning.  

Typing through mosquito's lunch time, I'm trying to breathe through each word I type.  Writing through the ride I call, Feeling It All Express, gives me a nice space to process it all.  Some days it happens in a journal; other days like today, you get to see it all here raw and sprawled out on the screen.  

There was a point in my life, where I realized I felt other's emotions with them (sometimes for them), and considered it to be a societal norm.  Imagining that it was a human species thing, you know to have natural empathy for others.  To my dismay it's not a normal thing.  It really was a hard lesson to learn that not everyone is empathic.   

Through my years of feeling others pains and joys with them, to having true care or love for them, I've had hundreds attempt to discourage me from continuing this, with words like: "You really need to separate from it." "That's not yours." "Why do you care so much?" "Stop taking on the worlds problems."....

No one telling me, these, that they consider, words of wisdom, meant any harm in trying to teach me to separate from others.  However, none of them ever had a chance.  This was a core of who I am, and not even years of having my heart broken and carrying other people's emotions, would ever rid it. Ingrained behaviors, once understood, can hold such power. Now while, I still feel the world around me, I am able to find balance much easier these days. 

I also learned, that people CAN learn to be empathic. 

We've been taught to separate from one another, to stop feeling others emotions, because it's not ours; so much that we've become numb to hurting others.  I don't believe this is innate in anyone.  It's all learned, hatred/disconnect/numbness it's learned.  So it can of course be unlearned.  Truly I'm convinced if we all started to feel more of this world, instead of disconnecting; we could solve all of live's problems.

For instance, you should care that others husbands, wives, brothers, sisters, daughters, moms, dads, etc are dying from ALS (any disease really).  It shouldn't be something you hide from your news feed, because it's too sad to look at. Because with how much we've poisoned ourselves/are being poisoned you will in your lifetime know someone with ALS/MS/Cancer/Lymes/etc.  

I am envisioning a world where people will rally for true treatments for these illness, like they do politics.  I see people put their every bit of energy into rallying behind a politician, but then in every other area of their life, they are disconnected.  Hiding the world's problems doesn't keep you safe from them.  Hiding the world's problems also certainly doesn't make them going away.  

Let's all stop hiding.  Seriously, and feel things again.  Care about our planet, and the people on it.  I wouldn't even waste my time on this, if I didn't actually see it as a possible thing.  So what's the best way to teach someone empathy/care/love?  Show it to them (everyone).  Really show it, and watch the change.  

Wednesday, August 10, 2016

Yeah, you've read this before.

As I'm going through my routine this morning, feeling the anxiety creeping in, I began having flash backs so vivid, I had to sit down. Looking down at the man that for 4 months had only shown me love and strength, inconsolable as he lays on my lap sobbing, the doctors voice seems to fade as though he's in another room.  Hearing words jump out at me "The prognosis is 2-5 years from diagnosis.....I'll get you in touch with the ALS clinic closer to your house....there's hope..."  

I remember this scene as though it had happened yesterday, and not 5 years ago today.  5 years.  I'm glad to be writing this blog today, because there were more times than I like to remember that almost stopped Steve from making it to this landmark day.  This day 5 years ago, I truly didn't know if I would still have my husband and I could have never imagined all that we have gone through.  

Recalling this day 5 years ago, and all that's happened in between I want to write 5 huge things I've learned from this wild, unpredictable, up and down, and all around ride.  

1. Love truly does conquer all.  If you've followed Steve & I for this long, you know the reality of the situation almost overruled the sanctity of marriage on many occasions.  It truly took love to overcome the fights, the wheelchair running overs, the slapping of fear, hands, & reality.  Without love, neither Steve or I would have survived the past 5 years.  Not just our marriage but with what all ALS puts you through.  This day 5 years ago we were so naive on if all the progression would happen to Steve, and if you've followed you'll know it violently hit us on each new stage.  Every new challenge, every new routine change, without love it would have torn us apart, but instead it's made us stronger; stronger than I could have ever imagined us to be. 
2. Good health is a blessing. Aside from the destruction of ALS, the added complications, that are added to the already devastating disease progression, puts life into perspective.  I used to complain when my nose was a little stuffy, or I had a sore throat; but looking back at all Steve's gone through; I never ever ever have anything to complain about.  My health is a blessing, my ability to walk, talk, eat, breathe, clear my lungs, bend my arms and knees, scratch an itch, rub a sore muscle, etc.  It's all a blessing.  Just to be able to actually cough when I'm sick, to be able to put my own band aid on a scratch, or to be able to use that muscle no matter how sore it gets. To be able to write this blog.  It's all a blessing.  
3. Bad times do not last.  No matter how bad they seem. "There's no way we will get through this," is a thought that would cross my mind during each new adjustment in the early days.  After new dark periods, the light would come back shining a little brighter each time.  Slowly as we started to become professional rough patch survivors, we would find ourselves using that belief, that something good was around the corner, to carry us through. 
4. Choices really matter.  Until Steve and I chose to accept the diagnosis, we were at odds with life, once we were able to accept the reality, it was then that we were able to plan and live.  We had to make the choice early on because in the first few days, we almost lost it all.  We were going to break up, Steve wasn't going to fight this, and we were going to forget the love between the two of us ever existed.  Thankfully that lasted a day or two, because the choice to be together for whatever time we did have, the choice to do as much as we could with what we had, and the choice to take what life gives you and make the best of it; is the only reason we've made it 5 years.  It was a choice to make our life what we have.  There will never be a choice I've made so important in my lifetime.  
5. There's always something to be grateful for.  Shifting a life from focusing on the negative life was handing me, to the focus on all the blessings maybe should be number 1 on the list.  Because without this none of the others would even be here.  I probably wouldn't be writing this blog.  Finding the blessing in every situation is the cheese in mac n cheese.  Without it, bad times would last, choices would probably lean more towards the negative, I wouldn't see many blessings, & love may not have been enough.  You create your life everyday.  So many people say, "But I didn't choose this to happen to me."  Of course, we didn't choose ALS; but we took that circumstance and chose how to make it the best life we could, by finding the good.  I've written on this (all of it really) before, but still find myself writing on it.  Because, I still find people needing to read the message (and me needing a reminder).  So a trick I've shared before is to start and end your day with 5 gratitude's.  If you haven't tried it from the first 100 times I've talked about it, maybe you will time 101. :) 

To sit here and be able to explain how much growth, joy, & perspective the past 5 years have brought me in one blog, is impossible.  Hence, why I have committed to writing in my book daily.  It may take me another 5 years to write it ;), but this day 5 years ago, put Steve and I on a new path with two different options to walk down.  I tear up when I think of how grateful I am we chose this path, because we didn't have to, and it would have been easier not to.  So for the next how many years I'm gifted with, on this day, I will reflect in the same way, and share an eerily similar blog; because for every new person to read this, and them to choose the positive path; my life purpose is fulfilled. 

Tuesday, August 9, 2016

Pause, snuggle, and breathe

For me there's nothing more important than routine, maybe other than a break in routine.  Seeing that we look at the same art covered walls, paint splattered floors, and jungle like outdoors, and both have our routines, that I've given the chic name of ritual; sometimes a change in routine is the best thing to bring new energy.

Although we are in the same space everyday, no two days are the same.  Aside from our rituals we do daily, we have the free, vastly open, sacred space where we go with where the day is taking us.  I consider it a blessing to be able to live life this way with my favorite person in the universe everyday. However, some days I need a break in routine

A lot of my daily practice is too important to my soul to just not do, so I like to change around times. On this rainy morning, I didn't set an alarm, I laid in bed and watched the rain and cuddled with the best cuddle pup (Marlowe our black lab) & shared morning giggles with Steve.  I didn't care what time it was, when I would blog or do yoga, and did some walking garden meditation this morning.  It was lovely, and suddenly blogging seemed effortless again.

As I sit here sipping on my coffee, surrounded by greenery, listening to the water break over the rocks, the cardinals, finches, and bluejay sing in melody, and feel the spits of rain making it through the tree covering, I feel inspired again.  I see new inspiration in the same scenery and all it took was a change in routine, maybe even some spoiling so to speak. 

I've been doing so much adult-must-do-to-survive skills lately, that this rainy day of no schedule, no lists, no time watching is the sweet I've been cutting out with ridding sugar again.  Life needs sweet, just as it does bitter.  If life is bringing you endless bitter, make your own sweet y'all.  What do you enjoy?  What sounds heavenly right now?  A massage? A day of no social media, a day of not replying to emails,....  Whatever it is, make space for it.  

Because just as important as it is to go go go do do do..., it's important to pause, snuggle, and breathe.

Monday, August 8, 2016

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? :)  

Friday, August 5, 2016

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, get the point. 

Thursday, August 4, 2016


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.