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. :) 

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. 

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.  

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.  

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.  

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. 

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.

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? :)