STOP AVOIDING

If you know me well enough, you know my constant pursuit of knowledge runs deep.  So it's of no surprise then that I am in two courses one my herbal immersion program (which is two years), and recently I began an intuitive plant medicine course which runs through spring and summer.  

Both are equally blowing my mind, but an exercise I was assigned for the intuitive course yesterday, provided me with some insight into myself, that was always on the surface for me to just recognize, but I never wanted to acknowledge it. 

With it being ALS awareness month as I spoke on yesterday, and I'm used to sharing my ups and downs with Steve, I want to share this one.  The rest I think I'll keep to my journal, the plants, stones, trees, and me. :)

So I have moments with Steve, where he could say, "you're beautiful," and I want to bite his head off.  This is beyond just a wife being annoyed at her husband, or a caregiver annoyed at her patient (I don't like that word but it's what fits here).  It's much deeper and hidden, because I of course avoided looking the issue in the eye.  I hid it with all sorts of excuses and hurt feelings.

Truth is, I feel stress every single minute of every single day about Steve.  When I sleep I will sometimes jump out of bed in a panic to see if Steve's okay; tossing and turning through the night with lots of visions of wounds, and UTI discharge, and unpleasantries.   (I really feel like that should be a word).

Every herbal remedy I learn about, I contemplate if I can use it on Steve, every plant I talk to, I ask it to help guide me with Steve.  It's like my life is completely run by Steve and ALS. Without wanting to recognize that I have been filled the the brim with anxiety, it comes out in little spurts of, "Stop interrupting me's."  This isn't the first time I've written on understanding my behaviors with Steve, nor will it probably be the last.  I am well aware that life is a constant teaching (if you're paying attention).  

Here I am trying to do things to feed my soul, so I can be a better person, caregiver, wife; and instead of it feeding my soul, it's feeding my obsession.  I'm a woman obsessed with finding things to help.  Obsession isn't new to me.  It's something that happens, I find something I like and I'm obsessed until I get what I need out of it, or it takes over me, and I have to let it go.

Well, I'm here laying under a pile of obsessive thoughts, clearing away some of the rubble to reach the light.  Of course, I don't want to dismiss all that this journey has brought me, and the deep connection to the earth and flowers I'm growing.  It's not that I'm not being enriched in any way, it's that there is a big bug eating away at my beautiful green leafs, and instead of stopping, the bugs reproducing and taking out the whole crop. 

So what do I do about it?  One is to acknowledge it.  I'm anxious, I'm obsessed, I'm stressed out, and it's all my mind.  It's constantly going and even while I meditate it's still spewing it's baby bug eggs.  

This is where I am, and maybe I need a fire ceremony, or a group of my girlfriends to come and dump bottles of wine down my throat?  I don't truthfully have the answer, because I haven't wanted to admit it.  I just want to avoid it like I have been everything.  I avoid people, bills, responsibilities, voicemail, messages, mailing products, admitting where I'm spiraling.  So maybe all I do for now is sit with it.  Stop avoiding.

Sometimes I don't know why I feel so pulled to share my weaknesses on a public forum. Seriously, today after I wrote all about these thoughts, I couldn't shake the feeling.  I literally said out loud, to all that's listening, "Not this, really?"  I went about and got things ready for wound care, and the computer was pulling me in like a magnet.  So here I am.  Maybe it's the fairies guiding me to help someone they see needing the words, or it's God reminding me that I can't hide from anyone including myself.  Either way, here's some awareness on life with ALS for you. 

ALS awareness month.

There's more to May than flowers and all things good and witchy.  May is also ALS awareness month.  It used to be, come May 1st I would be wracking my brain with something special we could do to brew up some awareness.  Some ideas I would come up with were inspiring and successful, some not so much (if you've followed me long enough let's not remember those together) :).

This year, I don't feel the same pressure.  I, of course, want to spread awareness for ALS; but like Earth day, it's not something I do one day or one month.  We live ALS everyday.  We share awareness, every time we share our lives.  Even if it's not directly related to an ALS statistic that I probably copied and pasted from a website.  

So here's my wild idea for ALS awareness month.  KEEP DOING what we ARE ALREADY doing. 

I find sharing our lives, our truths, and our normal's; to be the kind of ALS awareness that leaves an impact, because it's not some stat that's probably not even really true anymore.  How many people were told they could expect the 2-5 years life time expectancy?  It's just that these statistics, couldn't possibly reach everyone.  Some of our ALS friends who were diagnosed same time as Steve are no longer here.  Some of them are still walking, talking, and breathing 100% on their own.  Some friends were diagnosed months ago and have already left us, and some 15 to 20 years ago and they are stronger than ever.  There is no fact that encompasses this entire group of strong willed individuals, aside from one thing.

Everyone gets a choice on how they want to live.  Do you want a feeding tube? Do you want a catheter? A trache? A vent? Do you want to deal with the complications that no doctor could predict could happen do you?  It's often that very thought that helps all of us knowing someone living with ALS.  They get a choice how far they want to go with this.  Some choose no support, and to let the disease run it's course.  Some choose to fight with every ounce they have inside of themselves, and use all things available to aide in continuing to do so.

There is no right or wrong way to live with ALS, just as there is not right or wrong way to live without ALS.  It's all our choices on how we want to handle a circumstance life hands to us.  It wasn't a choice of any of these brave souls, to have to face a terminal illness head on; yet everyone I've met does.  They take the information handed to them, they think on all the ways in which life with ALS will impact them, their loved ones; and they make the choice that's best for them.  

There's so much we can learn from all the fine folks living with ALS.  Aside from the obvious reminders to be thankful for our health, ability to eat, breathe, talk, speak, move, etc.  My number one take away: ATTITUDE MATTERS MOST.  Everyone I have come in contact with living with this disease, has an attitude of acceptance.  An attitude of understanding that life is going to bring you unseen circumstances and your choice to make the very best of it, matters.  An attitude of accepting that you have no idea how long you will be on this beautiful Earth, one we all truly should have.  I may not have any diagnosis dictating my life, but I have the understanding that any day something could happen to me.  Nothing is for certain, and taking everyday as a blessing, is my favorite way to honor all of those putting everything they have into living for another day.  

Even if that day is in bed, unable to move a muscle, unable to speak yet through tired eyes, that only work for a few hours a day, having to be turned in ways your body no longer understands as normal, to have wounds cleaned.  To have holes that have been in your body so long, they are now stretching beyond medical comprehension (ie: trache stoma, feeding tube, urine catheter).  To have a list of complications so long that doctors begin to look at you as a medical marvel.  Despite all of that, Steve (amongst so many others) wakes up every day greeting me with a smile.  Even if I'm meeting him with a snarky, "You interrupted my meditation instead of a good morning."  Always a smile to start his day, filled with gratitude for another day to be here.  Another day to participate in this life in all the ways he has energy.  

How then can we spread awareness for all of those living with this cruel monster that is ALS?

My answer.  Make everyday sacred.  Even the days where nothing goes right, the days you feel so tired you can barely put one foot in front of the others, the days you discover a slug ate half of your favorite plant, the days you burn breakfast, lunch, and dinner, the days you loose your job; etc.  Everyday no matter what happens that day IS sacred, because you're alive.  That's enough.    

So for this month and the rest of my life, I will do the best to make everyday sacred.  To choose gratitude, and acceptance no matter what is presented to me.  I will do everything I can to treat my health as a blessing, and lovingly care for myself because my body is sacred.  For everyday I wake up and can take a breath of air into my lungs without a machine, I will remember what a blessing that is.  When I stand up out of bed, I will give thanks for muscles/nerves/bones that support me.  When I eat, I will choose foods that nourish me, and give thanks for the ability to chew, swallow, and absorb the nutrients I'm taking in.  For everyday I get to use my voice, I will use it for a way that honors those who no longer have theirs.  Because life is sacred, and if anything these beautiful beings can teach you, is to live everyday in reverence of it. 

Beltane gifts

The more I grow the more I see. It's like the blooms bursting through the ground growing closer to the sun with each day.

Learning to care for Steve with every ALS progression and challenge, opened me up to sides of myself I never knew existed.  It was like I was only seeing chapter 1 to my inner story.  The more I opened myself to the understanding that I am capable, the more I would grow towards the sun.  Discovering new areas in life, where I can self sow. I can continue moving forward as long as I choose to.  The more I learned to trust the call, and have the courage to answer it; the more life is revealed to me. Often feeling like I had just gotten a software upgrade. The Hope 8.0. Just out.

❤️The beautiful ways in which Steve and I have collided and have been launched forward in our lives purposes, is enough to write a book (see what I did there), but some days I feel so pulled to share here.  

His body is now leading me to reconnecting with the earth. I find myself instinctively doing something to help make formulas to help Steve and I. Downloading memories of childhood and deleting the “cookies”, in technology terms, that accidentally deleted what is my truth. As a child I spoke to  the trees, flowers, the earth and considered them friends. Over time I was taught this was wrong, or weird.  There wasn’t just one event, but a series that deleted one file at a time, replacing it with a corrupt version.  

If this sounds familiar it's because the more I reconnect the more I discover; and the more life reveals itself the pull to share the next layer of this increases.

✨Today is Beltane (Beltane week), and today it’s gifting me with lots of new florets.  As I was in the kitchen working on some creams/salves, a flower essence, a new batch of kombucha, and restarting some pain and wound oils; I was struck with lightning (figuratively y'all). It was as though I grew instantly in that moment. 

Today during wound care I took a photo. I like to take time to photograph the wounds every few months to track progress.  I did some comparison and was of course delighted in some areas, and concerned and stretched in others.  Steve's body much like our life together (and my entire life really) is guiding me. This time it’s guiding me to use the gifts from the earth, and to learn and soak in as much as I can. As I put in hours to give back to the earth with the garden, composts, speaking up for her, to trying with every choice I make to be making my impact positive and not negative; the more healing gifts she brings me.  

This symbiotic relationship felt very profound to me this beautiful Beltane may day. 🌿✨❤️

Increasingly as I tend to my plant babes, I bring back talking to the trees and birds, and now learning to talk to the  bugs and chipmunks (asking they be a little more kind to me).  As I connect more, and learn more, and experience more with Steve; I feel more overwhelmed with gratitude with love with understanding, with the grace to understand there's always more to learn. Clear messages, without giving the hiccup any drama they become my guides.  

Here Hope learn this.

Share this.

Plant this.

Give your plant this.

Give Steve this.

Stop doing this.

Understand that.

Remember when.

Just try.

Just listen.

🌿Today my little corner of the world is bursting with life.  As I discover and create new relationships, I see more.  I feel more.  It’s understanding that I'm learning all this right now because some places aren't bursting with life, but with destruction.  My surroundings, my lessons, my life is a tool. I see it today and I give thanks for it. Because this purpose will help me everyday to bloom with life a little more each day, and less with destruction; building an effect that goes beyond just my little corner, and out into the world.

The space between...

I developed a reaction to hearing about trauma, watching traumatic movies, or even talking to my friends about their trauma in the past few years.  It confused me, at first. 

During the pursuit of my master's degree (in Clinical Psychology), I learned loads about understanding people's traumas, getting them to open up about it, and how to hold space for them to allow them to process it once and for all.  All while,  feeling totally at peace with all my trauma.  It felt very natural during my years counseling, to talk to people about their stuff, and to help them work through it all. 

Like the vast majority of us, I experienced my own traumas through out life, much of which I write about in my book; and I consider myself blessed to have had the mom that I do.  She really taught us at an early age to face life head on, and to truly deal with all that happens. 

Things will come up for me present day, and I think, "Wow where did that come from?"  Not always is it something from the past, sometimes it's just that the present moment is the trauma. Being directly in trauma, and being fully aware of it, is intense.  It's knowing the big punches that come from progressed ALS will happen, but learning not to live in the moments fearing what's to come. 

There is so much trauma in ALS.  Starting from the days of Steve falling and cracking his face open, to him breaking bones while falling, to him coding, to him dying and coming back, to the times of gastroparesis and having to dig vomit out of his throat before he aspirated,  to the respiratory distress moments, and every single random complication that is too much to list here, hence writing a book.  Yesterday was somehow another first for us.  

During a routine catheter change, that Steve has done roughly every 2 weeks due to infections, and clogging of catheters.  Upon taking the catheter out, he began gushing blood.  Yes from there.  Of course as I'm in the midst of freaking out, and calling nurses, in laws, and my mom; I maintain some composure for Steve.  All while, thinking for sure we are rushing to the hospital for this one, and confused with Steve's refusal.  

Thankfully the bleeding stopped mostly (still a little drips this morning), we got a new catheter in with ease, and he's putting out great urine output, all from home.  Yesterday after my father in law and I finally got him cleaned up and settled after 3 hours of really being in that moment, I left the room shaking.  I felt my nerves giving up on me one by one, and it suddenly hit me.  I can't be exposed to other people's trauma's because I'm in the middle of my own.  It's not that I've become less caring or empathetic, but that I am doing the best I can here with my own. 

People often look at Steve and I and think, "What are they doing?" We know it, some people say it to us directly, and others just think it. We know both, trust me.  We feel it from you when you're sitting with us and you're thinking, "Just what is this."  I've lost close friends because they question our life, and will cut you off rather than address the issue face on.

Often feeling weak in my inability to adequately express myself to people, without truly being able to take the space to step back and  see it all for what it is.  Most days with Steve we don't have trauma, and even if something traumatic happens it's just part of our day.  This life is full of surprising, "Woah hold on tight it's getting bumpy," and equal parts, "Wow what a beautiful gift this is." 

Just because the traumatic events are intense, doesn't mean we are willing to give this up.  Of course, Steve has moments of being done with this journey, mostly in the moment of something challenging, but when he comes out he's back with vigor.  His strength is less, his communication is less, his participation is less, but his spirit is MORE.

His spirit reminds me every single day, this journey we are on, serves a very high purpose.  I'm changed after each traumatic event.  I see life through new eyes, as often as people are dying their hair these days.  The world is vastly different to me, than it was just a year ago; and I have peace.  Today despite the trauma, and the ways in which it truly kicks my ass, and the tornado warnings happening for us; I feel at peace. 

The peace may not stay, and I may get my ass kicked by something even within the hour, but right now all is okay.  Right now I'm thankful, and that is how I deal with trauma.  I allow the space in between to fill me up.  You know when we met Dave Matthews a few years ago, there was this connection between him and us; and our two friends that were with us still talk about it to this day.  Because somehow he knew his lyrics were made for people like us, because, "The space between the tears we cry, is the laughter that keeps us coming back for more."  

It's ok it's not in my control.

It's okay Its not in my control.

Breathe.

Make it sacred.

My mantra lately. When Steve is randomly breathing over his vent, or suffering from hiccups, or not up for communicating, it's not in my control.

It's okay.

Another storm comes and I hear things hit on the window the same window I just lost a black widow while trying to kill her.

It's okay, it's not in my control.

I have the capability to make whatever happens work, so why am I sitting here dreading any experience?

Because I'm a control freak.

It's okay. It's not in my control.

Wait, this one actually is.

So now I do a thing. It doesn't stop the anxiety from coming because honestly that would mean I'm numb. This is some anxious shit here! It's wild and intense.

So now when I'm in a moment I make it sacred.

I stop I breathe and I say it's okay it's out of my control.

I have to let go of what I can't control because it weighs me down heavily.

I can't carry another wasted pound.

I let it go. It's okay.  It's not in my control. 

How are you?

There is no question that gives me an allergic reaction more than, "How are you?"

I am a very keep it real kind of girl, being one who naturally finds a good I believe in as equally as the bad, so, "How am I?"

My perspective isn't the same from moment to moment, so my "How am I," changes more often than my clothes.  

I am 100% okay with that fact.  I am currently okay with being many things at once. 

Real and optimistic. Happy with sadness. Grateful with anxiety. Its the duality of life, many people shame, that's what I am.  

One minute I'm well adjusted, the next I'm in reaction mode, then on to survival, to checking out to deal with life.  Slowly coming back to the ground, diving deep into practice; striving, creative, inspired, scared, grateful, nauseated, curled over in pain, feeling strong in a new yoga pose, feeling weak as I shake under 6 blankets.  I am peaceful and find my acceptance while I fight, I kick, I cry, and I scream.  Boy do I scream. 

I share. I retreat. I doubt and I believe. I'm okay with every bit of it. 

No longer do I accept anyone telling me how I should be, or expecting it to be something you can even handle hearing about. 

Maybe there's a new way to ask. "How are you?" Without using the question. Maybe just check in, a quick I was thinking about you, and share what made you think of me.  That's a check in that reminds us, that we are relate-able in ways beyond you wondering, "How in the hell I can possibly be okay while we are getting our asses kicked by ALS?" How can I be okay despite complications of absorption problems how despite using every ounce of energy I have inside of my being, I can't stop the infections, in fact I can't do much to "fix it"?  

I'm a recovering "fixer", unable to fix anything, allowing it to break me a part little by little.  

I am trying to keep up with all these thoughts, ideas, words, people, set backs, house/adult responsibilities, debt etc.  Some days blissfully in the flow and remembering that I AM HOPE.  Other day's I'm more chaotic than I could ever manage to explain.  

So tired the thought of getting out of bed causes nausea, yet everyday I show up.  I put in everything I have.  

Trying to remember to slow down before life trips me up.  Trying to take in every moment and being loving when I forget most of it.  Eager to learn, desperate to remember, hopeful to teach.  

I am certain I'm experiencing this "lifetime" of my many lives here for continued explosions in growth.  Every explosion is a rebirth.  With every rebirth comes loss.  Comes unexplained good byes, and reminders that I am not a good communicator.  I will hide from you behind a computer and avoid talking to you one on one.  Bring me to a crowd and I turn electric.  

I'm  evolving and some days I'm stuck.  I'm encouraging, and some days I tear down.  Also on the other side of that pattern being encouraged and tore down. 

I'm opening, understanding, and seeing more; I choose to see less. Becoming okay with selectivity, terrified by boundaries, yet amazing in time.  

I am a seeker of balance.  I'm a reader, and will learn you inside and out, but won't maintain the knowledge.  I won't maintain a friendship but love you all the same. 

Awkward and comfortable.

A total control freak, freaking out over how little control I have; taking what life hands me and making it work. 

I'm dizzy.  I'm embracing aging with shock with how quickly it all happens.  Accepting it isn't what makes me how I am. 

I'm scared to answer the question.  Despite all I do to use the power of language for the positive, the darkness that comes with it, sometimes terrifies me.  I stare darkness in the face and walk straight into it. 

Sometimes I feel punished, sometimes blessed. 

When I remember how blessed I am to be able to walk, talk, breathe, eat, have shelter, have clean water, have access to healthy foods, etc I cry. 

I'm motivated, while feeling the failure with every stumble.

I am focused, I am distracted, I am driven, I am broken down.

I am driven and persistent and LOW on fight. 

I always warrior up when I'm needed; and it kicks my ass equal parts good and bad.

I am foggy, I am clear. I am full of words, and I have none.  

I am many things, but i'll never be able to answer your question; because you couldn't fully understand.  

I am me, I am okay with it.  I am more than a, "How are you?"