Friday, October 7, 2016


If you do something out of duty it will drain you, if you do something out of love it will energize you.
These past 3 weeks, I've been reshaping, refocusing, refueling, & rearranging; lots and lots of rearranging.  Rearranging of habits, thoughts, & of course the house.  Now I'm here to resurface.  I won't lie, while yes I did miss feeling connected to all of you, it was nice to just be in our world for a bit.  I was genuinely clueless about a lot of things, because it wasn't just a social media break, but more of one from anything extra.

I really needed to wrap my head around all the happenings here, and I couldn't do that with focusing on any other happening.

I will say, the lessons from these three weeks are more profound than one blog will suffice, and of course I have lots of fun things to share; but first my most profound lesson.

If you know me at all, you know that while people just assume I'm naturally a really good person, because I chose love and didn't abandon Steve; the truth is, I am a normal person, working non stop to be the best version of myself that I can be.  I know how very capable I am of being a good person, but that doesn't make the shadow disappear.

All this time, I thought, if I could just reach to that really good, kind, patient girl; the dark, inpatient, quick to reaction, sassy one will just go away.  That's not really how this works.  It just doesn't go away, so it takes a practice everyday to be the person, I know I can be. Realizing more clearly now after these three weeks, that my practice and routine, is really the fuel to be that person I aim to be.

I had to change, and create consistency.  Of course, it takes longer than 3 weeks to really lock in consistent habits & healthy routines; but the beginning is the hard part.  I really needed to clear the space of anything extra, to really get clarity on what needed to stay, and what needed to go.

For several months, I would often find myself feeling horrible after snapping at someone new each day, for them wasting my time.  I couldn't get anything done, and thought it was everyone taking so much from me; more like me just handing it out like some sort of sample lady at whole foods.  My understanding on how to use time, was making everything feel like an obligation, like everything/everyone needed too much from me, and I was feeling drained. Instead of having focus, and routines through the day, I was just trying to tackle live's problems in whole daily, and as I would fail I would feel the pile up on me.

Stepping back, clearing space, & rearranging I now see that when I see things from love, it's energizing instead of draining; and suddenly I'm able to to have the time and energy to do all I set out for.  I see now if I have clear goals, a consistent practice, and consistent routines through the day, that mindset of love comes naturally. If I just sleep in that day to miss meditation, or decide to spend my afternoon facebook stalking instead of keeping my writing or creating dates; there's no one to blame but myself.

Understanding me and what makes me react, pause, act, etc; is the only path to reaching my highest potential.  The more I go in, the more light i'll shine out.  With everything going on in the world from elections, to unjust treatments of others, violence, killings, hurricanes, etc; it's more important now than ever, that I remain grounded so I don't allow it to swoop me up in it's current.  I can't help anyone being tossed around by everything, I can only help with both feet firmly on the ground, with love leading, not duty.

Ok now to something exciting :).

Well, aside from lots as usual, I had a dear and talented friend, Laurie Moletta, come take some photos of a day in the life of Hope & Steve, and while she was here I mentioned wanting to update Hopie Hippie :) & seeing as she's who fancied up Hopeforsteve, she said, "I'd love to help you."   On the freshly madeover page you'll see some new listings; I've been making as often as I can squeeze it in for that and Steve's Drive show happening October 15th.  7 PM 658 Angier Ave Unit C.

It's nice to be back, I came back a few days early because I really wanted to track all of the people I know in Hurricane Matthew's path, and put some intention into helping anyway I can from here. Love you all, and thanks for supporting us!

Friday, September 16, 2016

When life gets complicated you adjust.

This will be my last blog for a little while.  I plan to take an extended social media break starting tomorrow, that will last for as long as I need it to. I'm using the full moon today, to jump start some changes, and for that reason I will be disconnecting so I can focus all of my energies on what's going on here.  As usual don't worry if something happens that is worth reporting, positive or negative, I'll let y'all know.  I appreciate how much you all do care about Steve & me, and how much you love to follow along with our journey.  

As most of you know, Steve's laundry list of complications have grown to an overwhelming amount. I don't always do the best job sharing this kind of stuff with you, so I want to go into it here.  This is just touching the surface, but will give you an idea on why it's hard for me to get anything done around here.  I consider it a huge blessing to be able to care for Steve, and the extra projects are never as important as taking care of Steve; but because he requires more time for me, I need to really get a grip on my "me" time and get a routine in so it's used best for my mental/physical well being.  

To start with we have the wound on Steve's left lower booty cheek, that's been there since April.  We are healing thankfully, and while we have decreased turning him by one day per week, we are still spending large quantities of time to assure we continue on the right path.  Steve's right lower lobe of his lung has collapsed on itself from this chronic infection he has had for 3 years now.  There's the constant trial of antibiotics, ranging from IV to feeding tube, that his body is slowly rejecting more and more.  He's currently on a break from all antibiotics due to extreme stomach complications from them.  Then comes the feeding tube, that because his body only gets fed IV foods (due to the gastroparesus) the 'holes' introduced to his body have all stretched; feeding tube included.  Now it leaks stomach acid on the hour, requiring immediate cleaning of the site and redressing.  The only way they will change his tube out from this point on is if it stops working, because the more they try to introduce new tubes, the more stretching we will have.  Now comes our biggest & scariest complication the trach.  If you followed us closely while we were in the hospital, you know Steve has the largest trach made, and unfortunately his trachea and stoma have deteriorated.  It's speculated these three things are the cause: from when Steve would violently vomit anything put in his stomach (back in his rapid approach to the 67 lbs days), the copious amounts of sputum in his lungs constantly trying to come out, and again he's fed IV.  The TPN (IV food) saved his life, but it only goes so far in nourishing, food (and water) really is life. So Steve's trach will now leak 5-6 times a day requiring extensive trach care, packing the stoma, and adjusting the cuff to stop the leak.  Of course, all while helping Steve maintain his calm.  Because of constant stomach problems, we have an absorption problem.  Doctors are unable to figure this out, because some days, Steve will be given his medication and he feels like he hasn't received any and some days he gets the same amount and he can't even open his eyes.  Since the overdose that happened in December because of the absorption problem, I have to monitor his alertness to determine dosage of medications.  Because there is no way for us to fully comprehend his body, there is no clear cut dosing for him anymore. 

So this is just the additional add on's to what ALS already presents us with.  If you've ever watched the movie, The Revenent, with Leonardo DiCaprio, most of us have compared him with Steve.  He is constantly facing challenges that can easily kill him, yet he overcomes every one, much like Steve. Every discussion with a doctor is the same thing, Steve's outliving everyone's expectations, and they really are all doing the best they can, and keep praising Steve on his strong will to live.  Both of us truly understanding this journey is a day to day, accepting that any number of these complications could be enough to take him, we are facing the impermanence of life daily.  Fortunately we also choose not to live in fear, and instead live in gratitude for everyday we do get.  That part was easy to adjust to, what hasn't been is how I should be spending the time when Steve's napping/resting/watching football.  Because it's all so much for my brain to comprehend some days I just walk laps around the house trying to decide what I want to do.  

So, until I can get a full grip on how to truly nourish myself with some down time everyday, I'll keep feeling depleted, overwhelmed, anxious, and frustrated.  I am okay health wise, so please don't get alarmed; when I explained this to some close friends they immediately became concerned that maybe I wasn't well.  I promise I'm okay, and this is to assure I continue to be.  I will of course be keeping up with my daily writing habits except mostly it will be for personal growth and the book.  If I write something exceptional while I'm gone, I'll tuck it away to share when I'm back.  

I'll leave with this simple truth:  If I can create a consistent, realistic, routine between Steve and myself, I can accomplish all I want to.  I know I am capable of all that comes to my mind, I know I can do better with my time, I know I can continue to maintain my vibrant health, and I know I can keep Steve going as long as he's in, I'm in.  I know I can do this all, but know it requires some changes that will take work.  SO, with that said, I will see you all as soon as I'm happy with the course we are on.  

If you need me and can't figure out how to reach me, email me  I will still check my email a couple times a week, and if you have my number of course text me.  Hopefully after I get a balance I'll actually get better at replying to people; although I wouldn't hold my breath (some things never change ;)).

We love you, and again thanks for caring, supporting, praying, etc.  You all help us so much more than you will ever know.  

Thursday, September 15, 2016

Happy clouds

Flow state: A moment filled with that special energy of getting so much done with little effort (being in the zone), much like I imagine it looked like when God made clouds, or how it does look when Bob Ross paints them.

I, like most who experience a flow state, want to have the flow as much as possible, and I pursue it in ways to try to create the energy every day.  Because we are humans the flow state doesn't come to us everyday, even if we try all of our rituals, tricks, & routines. What trips me up is, having so many thoughts and ideas in my head that I just want to do them all, that even if I'm going against that current, damnit I still want to accomplish my tasks.

Recently I discovered that on days where the flow isn't there and I'm trudging against the current to get things done, I'm frustrated, anxious, and exhausted. I don't know why it actually took me this long to understand the frustrated periods. Watching Steve champion through the last 5 years, I've learned 3 important things from him (really 300,000 but there's no room for all of that), 1. Take advantage of the good days. 2. Live and enjoy every moment, even if it's not what you wanted that day, you take it and make the very damn best of it. 3. Really there's so many more important things in life, than to worry about taking a day off here and there.

Here's where I caution people, please do not tell me the cliche, "Slow down, you have time."

No I don't.  Neither do you.  Stop telling everyone we have time.  We don't.

If we did I wouldn't wake up praying that I get another day with Steve every single day, innocent people wouldn't get murdered, the earth wouldn't be rapidly warming up while people stand around acting like they can't do a damn thing about it.

We don't have time.  So naturally I don't want to waste it, but having the discernment to know how to take the ebs and flows and truly live in whatever moment life is presenting fully and openly, and making the best of them, adds some hours-days-weeks to the clock.

So what we have is choice to use our time wisely.  Not time. Choice to pursue the flow, accept the changing winds, and to really show up everyday no matter what it presents you with.

Tuesday, September 13, 2016

Guided by Nature

Sitting feeling the chill on my legs, and the wind blow through my hair, with peaks of sunlight squeezing through the trees.   Mosquito's reminding me that it's not quite autumn, but the smell of leaves in the air are screaming, "Home girl, hang tight, I'm coming." 

The nature surrounding me has become my best friend, much like it did as a child.  Guiding me through the many changes in life, teaching me to flow with the season change and utilize there energies.  So with the promise of autumn, I feel an ease of releasing things that are no longer serving me to make space for that new growth this spring.  

So in an effort to open people up to some self reflection for what they need to release I will share one of mine with you all.  Because, autumn is coming y'all! *Insert excited face* The thing of all things, that I'm learning to release is, me getting out of my own way.  I am more clever than you probably have ever seen of me; because instead of using my time properly, I find 101 excuses why I should just go with whatever the day brings me, instead of a routine/planned day. 

Learning more of my inner workings has helped me understand ways in which my wild works for me in amazing ways, and ways in which it doesn't at all. The ways it works are obvious, the ways it doesn't aren't, so let me state it; my rebellion for structure & routine.  I spoke yesterday on having to learn to establish realistic routines because I will use every excuse there is on this entire planet, not to stick to one.  

So around here there is no "Same thing we do everyday..." skit happening, because there is not same everyday.  Of course, when it comes to Steve I have routines with him, and I promise you as important as it is to stick to it with him, we both resist it.  Two wild seeds planted in one wild life together, is a lot of fun, and we grow, stretch, and really experience every moment; but it's not always the most productive of environments.

Let me preface this with; no we will not be turning into productive robots that pump out items like an assembly line.  It doesn't matter how many special powers the two of us may have, that isn't in the realm of possible with the two of us.  However, a little less resisting of some structure to allow for a little more follow through come spring, is my main dying leaf for autumn.  

So with each leaf that falls, it symbolizes my release for resisting the most fundamental ingredients to me reaching my highest potential; ritual, routines, follow through, and maintaining.  Thank you nature for always pushing me forward.  There's a reason once you find the connection with the earth and her ways, you will defend her with every ounce of energy you have.  I hope you all find this connection in your lifetime.  

Monday, September 12, 2016

I'm only here for the habit

There isn't a bone in my body that wanted to write this blog today.  It's not that I don't totally adore y'all, it's just that today has been hectic, and I don't want to show up to work today.  But, alas, here I am fingers to the keyboard, keeping a commitment I made to myself to create a habit of writing daily.Feeling more at home here in my writing desk, the more words I type. 

I've been doing a lot of reading about habits the past week, sort of by accident.  I ordered two books (one audio & one hard copy) because as I'm sure you're not surprised, I can't read one book at a time.   Both are going to an extensive length to stress the importance of habits; for daily life and creative life.  

I can't say if it didn't happen to rain at 6 PM today, I would be sitting here writing this, because I'm sure I would be out in the garden or playing outside.  As you can see the habit hasn't formed quite yet.  

Habit: In simplest terms possible: something that you do so often and regularly, sometimes without knowing that you are doing it.

When most think of the word habit, they think of the negative habits they or someone they love has.  Of course letting go of bad habits is important to make space for the good, but the creating of good habits is just as important.

So how does one start?  Well, I am learning it's as simple as that first cigarette you have at the park swing set, except it probably won't make your head spin or make you want to throw up.  Even if it does, still do it.  The key is to do it enough times, that it becomes part of your subconscious.  Choose your good habits as often as you find yourself nibbling on that fingernail without thinking about it.  

Find something that will make you show up everyday.  Routine helps, but as a caregiver allow me to remind you, an unrealistic routine can backfire.  Too many things happen here for me to get into a routine of "I must do this, at this same time," because that one time Steve's up and needs me during my routine and I crumble, snap, pop, and break down to no longer having one; just doesn't work.  

So to help me work to stick this habit, it isn't I show up at 7 AM every morning and write; it's I will find the space of time to sit at that desk and write something ANYTIME today, even if it's just a paragraph.  There now a realistic goal I can keep enough to help form the habit.  

So here it is, me learning how to form a healthy habit, in front of everyone.    You're welcome.  <3 

Friday, September 9, 2016

If you don't like my fire...(passionate one this time, not the green kind)

Had some laptop troubles this week, so the blog was on pause, but I'm back. :)

So, today I'm here to stir up some controversy to make up for my missed time.  

I had a boyfriend once, who had me convinced my purpose in life was to attend classes, come home clean/cook/ and wait for him to come home.  I lost most of my friends and most of myself to this guy. Suddenly one day, someone asked me to model for them, thus introducing me to new people.  I started modeling while finishing grad school, which lead me to new people reminding me that I have actual feelings, emotions, and imagine this, opinions.  

A few months into my new life, I watched a documentary that made all kinds of things click for me, that made me decide to be a vegetarian.  One day I brought this boyfriend to a party, and someone asked me about my new decision to not eat meat.  After I very thoughtfully explained my choice, he suggested it was time to leave.  On the way home he said, "You know you're much prettier, when you stand and smile, instead of speaking your mind so loudly."  

Of course, I smiled, and shut up like the good little girl I was at the time.  Thankfully this boyfriend did me the best favor of all time, and broke up with me shortly after.  Albeit in the worst way possible, but I was then sent on my way to find my voice again. I wish I could say I immediately regained my spine quickly, but it took several years for me to do so. From where I sit today, I will never allow someone to take away my voice again.  

This (past 5) year(s) I have had several people suggest things to me like, "You shouldn't be so vocal about causes when you're trying to push your own cause." "Maybe you should tone down the activism, people will stop following you." or the ever so common, "Maybe if you weren't lecturing me with this, I would hear what you're saying."  Another favorite, "You would be more successful if you chose 1 passion, and stuck with it."  "You care about too many things." 

Let me start this by saying, I'm forever grateful for a man like Steve to be on this journey with.  When we decided to share our story so vocally we also decided to share ourselves.  OUR REAL selves. Not only is Steve on board with me sharing myself, he is constantly reminding me not to loose myself in the midst of care-giving life.  This man is the ideal partner in a world where strong women are often silenced. Real men, really do empower women.  There will never be a time where Steve and I will remain quiet on something we feel passionate about because we might loose followers.  It's not the tribe we are trying to build here. 

On to the lecture comment, that if you saw a post I made this morning: I spoke on this happening twice this week alone.  That's just this week.  I've been told maybe a hundred times the past 5 years, the because I am strongly speaking out about something I believe in, it sounds like I'm lecturing everybody.  To me, I consider this statement to be insulting.  Now I know I'm perceiving it this way, much like those offended by my posts are perceiving my words as a lecture, and it's not always intended this way but I want to speak on this.  I've seen this phrase used to remind women, "You should be gentle, soft spoken, and tread lightly."  I'm here to say, women please roar; scream, shout, curse, speak as loudly and as passionately as you want.  Never let someone convince you that your passion, is too much.  If it is for them, that's not your fault.  They can simply choose not to read your posts.  It's that simple.  I will never allow someone else to silence me again, and I hope that every female reading this feels empowered to live the same.   

Last but not least; PEOPLE there is no such thing as too many passions or caring too much.  Please stop insulting my intelligence by thinking my mind is too little to hold all my many passions.  Maybe I don't want your definition of success for my life anyways.  Someone telling me I'm too passionate in my mind means, "Hope I think I know what your time is better used for."  Honey, no you don't.  

I beg of everyone reading this, two things.:
A. If someone is too much for you, simply remove them from your feed/life/whatever you have to do.  DO NOT TRY TO PUT OUT THEIR DAMN FIRE.
B. IF someone's trying to put out your fire, tell them to kindly move along, to somewhere far away from you.  

Monday, September 5, 2016

From idea to flow

Have you ever had a time where you have so many ideas running through your head, that you actually feel a bit tired from all that energy expended in your mind?  That's how I feel right now. Typical me (It's the Vata in me for those who know Ayurveda), just wants to run with every wild idea, and thinks that I can really take them all on.  So often I do attempt every wild idea, because until I try it on and see how it fits, I can't really discern if it's meant for me or not.  

I share this process a lot maybe without going into full detail, because I feel like so many of us have wild ideas, and we think, "oh it's just another one of those," and blow them off. Since I've decided to start trying on a few of these wild ideas; I have found weaving and gardening; two of my favorite things to do right now.  

When your mind won't stop, you do need to practice discernment in what you do pursue; but I think it's just as important to be open to the ideas.  I now try out these ideas, and then ask myself, does this feel aligned with my higher purpose?

"Wait, Hope, how do you know that?" You ask. 

Here's how I've learned to understand it.  If I'm working on something, and I suddenly feel in the flow, while I have an emotional response; such as joy, excitement, amusement, even sometimes fear, then it's probably meant for me.  If I feel the call to it multiple times a week to daily, and I continue to grow the ideas for this particular project, then it's one that sticks. If it's not for me, I will feel it; I will be disconnected to the project, I will loose the spark, or it will simply just repeatedly not work to where I finally realize I'm fighting with a much larger force than myself.  

Another question I've been asked, and know others are thinking, "How do you know what your higher purpose is?"

From my perspective, my higher purpose has revealed itself to me overtime.  I often chased certain things that I thought were my path towards my purpose, and prior to me being in tune with my feelings and intuitions thought I was on the right path, and eventually life came to dramatically steer me elsewhere.  I've come to find my purpose as this: learning to love deeply and pure through caring for Steve, really opening up to all sides of myself, writing about my life in some form everyday (whether journal, book, blog) because writing helps me process life and helps others grow. I need to create things that helps me feel that alive joyful feeling, and continue to grow an eco system in my backyard and work towards my goal of being totally self sustainable one day.  I will continue to be a warrior for our planet, for ALS, and for my freedom to be me.  

Don't be afraid to try things, and if it gives you that feeling of "I have to do this" then follow that feeling.  Don't allow it to become negative, protect it, practice and grow, and really trust your intuition.  It's constantly guiding you, if you just listen.  

Thursday, September 1, 2016

Because after all, I'm not an alien.

From migraines to dealing with skeezy health insurance, my week isn't what I had planned for it.  Of course, by now in this journey I've grown accustomed to the ever changing winds.  Having goals and hopes for the week are great, but being open to what comes is really my trick to survival.

I caught myself saying something awful to Steve the other day, that I sometimes can't believe I share with you all.  Still the urge to type these words just won't leave me, so here I must again show my shadow to the world.  

I said, "Ugh this is totally ruining my day."  As I was working on something for him.  Translation that couldn't be lost here, 'You're ruining my day.' 

Steve, looking at me, tells me, "Hope Go," ignoring whatever it was that he needed at the time.  To which I properly stormed out and proceeded to tell the insurance company where to stick it.  Not my proudest moment. 

Why?  Right, why do I share these moments with you all?  Yeah, sometimes I ask myself that very question.  Truth is, I have so many people praise me on a daily basis, that my ego likes it, so days when I show the natural frustrations, I feel awful about myself.

It's probably no surprise to most that I would describe myself as an extremist.  So days when I do show my shadow, it's hard for me to accept.  I don't want to be that person.  I guess even a part of me doesn't want to be human at all, right?  I mean it has to be that extreme for me to expect myself never to say/do/think/feel anything negative.  

This is just another case of learning to roll with where the day takes me.  Sure I ate 3 cupcakes that day, and probably caused myself the migraine and I cussed out Steve, the dogs, and 5 different (innocent) people working for humana; but again, as I keep saying it doesn't make me a bad person.

So this is why.  This is why I share.  We (humans) often feel defeated after days like this, and I once did as well.  I would enter a state of self loathing, that would take me to a bottom of an empty hole, leaving me to have to crawl my way back out. Now I feel the need for pause, a need for some self love.  If I'm eating that many cupcakes and swearing at anyone I cross paths with (especially my dogs) then I need to stop trying to do it all.  

So I did.  Yesterday I didn't blog, and after doing the must do's with turning and cleaning Steve & making some must do phone calls, I shut off for the day and painted.  Then ending the day with another I ate too much sugar migraine I let go of judging myself for that day, and laid in bed with Steve (more like next to him in our 'I love Lucy' bed arrangement) and said, "It's okay.  It's all okay."  

So what's the lesson in these scattered words?  Let go of the judgement of yourself, when your shadow appears.  It should go without saying, that I obviously strive for my days not to be like this, and I would hope most of us do as well; but the off days shouldn't leave us hating ourselves.  It comes with life.  f we didn't have an off day on the occasion, we wouldn't be human, and as much as I like to pretend I'm an alien; I'm not.  I'm pretty sure you aren't either. :) 

Tuesday, August 30, 2016

Brandon Boyd dropping knowledge on me. :)

You know that glimmer of an old piece of your life that pops up in your mind like a projector showing a film, when you hear an old song.  My whole morning has been full of clips popping up, and often forcing me to the ground, having to sit and breathe to remind myself that I'm here and not in that clip.  

Deja Vu often reaches me in the mornings, and then I find myself spending an hour chasing the old feeling or memory around.  Half the time my intentions are to find a thread to pull on for writing, and the other half is just trying to find meaning in why that memory came up in this moment.  

Today I just sat with it, and decided to use music.  So here I sit listening to some Incubus from late 90s early 2000s.  Brandon Boyd's voice bringing out my inner screaming fan girl, and then I heard it. My favorite lyric of all time, and it made this blog happen. 

"And I can't help but ask myself how much I let the fear take the wheel and steer..." 

The other day I had a conversation with myself about this.  I was having a little mean girl moment, with pretty much everyone around me, and I started feeling like I was officially becoming a bad person.  As I sat reflecting on my actions, a thought came to me that I will probably write an entire chapter on (hopefully soon).  

I'm not a bad person, I'm a scared person.  

After this last hospital visit, I was allowing fear take the wheel and steer.  I didn't even fight it, I just handed the wheel over, and willingly sat myself in the backseat just reacting to where all the car was driving me.  

So following up with yesterday's blog on regaining my power, and how I did it; I had to admit I was afraid.  

Afraid of what, Hope?  

If you're asking that you must not be following us that closely, but I'll answer.  The longer you live with an illness like ALS, the more it will dig into Steve's body and cause destruction.  So yes, naturally the fear of what's next.  

Acknowledging the fear, helped me gain power back over it, and then deciding I didn't want to live in this space, gave me even more; until I was finally strong enough to put my hands firmly back on the wheel to drive.  

So thanks Brandon Boyd. :) For bringing me a little nostalgia in my morning lessons, and reminding me to keep my hands firmly on the wheel.  Because I am in charge here. 

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. 

Wednesday, August 3, 2016

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. 

Tuesday, August 2, 2016

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.  

Monday, August 1, 2016

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.

Sunday, July 31, 2016

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.