Wednesday, May 11, 2016

Words from the flow.

Some of you really resonated with yesterdays blog, thank you for your feedback.  One message, suggested, I should follow up the blog with some thoughts from the flow days.  

Well, I happen to like that idea, and thankfully, I am blessed with a flow day, today.  So I shall take this feedback and run with it, or shall I say flow. :)

Allowing myself the space and freedom to have days where I do have down time is only part of why I am able to have such productive, energized, monumental, inspired flow days.  Those down time days, aren't spent in vein.  They are spent in the garden amongst flowers, or covered in paint, or time having netflix marathons with Steve, cuddles with the pups, extra time in meditation, chatting away with social media connections, do you get my point,...?


Okay well, I find nourishing and comforting things to do when I feel the need for a little extra energy. I didn't always do this.  In fact Steve encouraged me to try this one day, and it's the most life changing decision I've made.  I used to spend those days sleeping in, or moping around, or not doing ANYTHING when I would feel the need for rest or pause;  and it would rarely refuel me. I was spinning my wheels working hard at this and that, doing what I could for Steve, and barely having the energy to do much else.

I had to have a shift.  It had to be this "Okay, if I need to just sit let me do it outside with the birds, the sun, the flowers, the breeze; or let me sit on my meditation matt."  or "Okay if I'm going to watch TV I'm going to do that with my best friend, who happens to spend most of his days watching TV.  I don't even have a remote to our bedroom TV Steve does it with his tobii, or working cable in the living room; because if I'm going to watch TV I want it to be with Steve."  

Another example if I haven't painted a clear picture, yes paint.  "So I'm feeling stir crazy, instead of allowing it to turn into anxiety, I should paint."  I used to pick fights with Steve because I wasn't allowing myself to really feel life, because I had zero coping skills.  So instead of FEELING the stir crazy, BREATHING through it, AND finding a NOURISHING ACTIVITY to do to use that energy, I would fight with Steve.  Steve thanks me for learning to live mindfully.  Trust me, he's been a pro at this for a while; I believe a terminal illness definitely puts you on the expert track to mindfulness.  

Steve and I have a beautiful bond and relationship now, but if you've followed us closely you will have heard both of us sharing openly the work it took us to get there.  The best decisions either of us ever made was to tap inside to see what made us flow, and what helped us get back to it.  What did we both enjoy so much, that we could physically could do; and will make us feel happy, inspired, and fulfilled.  Individually first, together next.  

It's not easy, but I promise it's worth it.  I shared mine with you all, and I'm sure some may wonder what Steve's is.  He loves painting days when he has the energy to get out of bed.  On the vast majority of days when he's needing to rest, he will work the stock market, edit my book (his brain is astounding), chat with his buddies on facebook, and of course follow his GA bulldogs (yes all year y'all, he loves him some dawgs).  

He finds joy in almost every simple moment that he isn't experiencing excruciating pain, and even then he still shows love.  I tell you it's beautiful to be around.  What an honor to spend my days with him.  

So there you have it my friends, some words; from the flow.  

Tuesday, May 10, 2016

The flow of life

It's interesting when you can let down your defenses when someone questions you about something, you will see how, what they really want is to understand you.  They want to learn more about you, and how we perceive that determines, if we can use it as a moment to teach others more intimate sides of ourselves or not.  

So recently I was asked, "Why I don't post more on Hopie Hippie?"

That simple question that I took and gave my own interpretation of, "They must think I sit at home and do nothing all day, or if she spent less time on the phone she could get things done."

Did any of the people say that when they asked me?  Of course not, those are judgments I have on myself.  Now of course it's obvious I don't sit around and do nothing all day taking care of an ALS patient is a full time job, but the phone thing; hey I love my social media community, I've grown a lot from them and the support is invaluable.  So it's not too much time, but it is a commitment of time.  

After I was able to let go of the made up drama it clicked, that it would be powerful to share with people about the way I live my days.  I start my days whenever I naturally wake up, which thankfully is usually 7:30.  Alarms wake Steve up and he needs his sleep, and thankfully because I don't HAVE to be up I don't use an alarm.  

I immediately check social media and emails and respond to people right when it's fresh on my mind while I soak up some puppy cuddles in bed.  I then do yoga and meditate before anything else, as it truly sets my day up with good energy, and me being entirely present.

That's the key to our life going well.  It's not about how many malas, weavings, paintings I make and sell.  Although I love creating days and put a lot of love and energy into my pieces as I love making them.  The most important key to me is how mindful and present am I today.  

Being entirely present and mindful in a 12 hour period is hard and it takes work.  It's a constant coming back to the moment, but days where I learn to follow the natural flows of life, are the days where I am able to be the most aware.  I'm a better caregiver, writer, creator, and all around person when I slow down the "I have to get this list of things done by this time" thinking and come back to, whatever I'm doing that day I really want to be there.  If I'm sitting outside and starring off into the sky, I'm going to be present and enjoy it.  Not feel guilty.  

This means some days I spend my whole day with Steve because he really needs me to, or on good days when he's kicking me out to watch his sports, I go with what I'm really feeling and drawn to. Intuitively I will walk over and pick up my journal and just start writing for hours on days when I have to work through life with words.  Some days I'll find myself walking aimlessly through the garden not really able to find the pull to do anything else, and then I'll have a garden day and really soak up that energy from momma earth to refill.  There are days where I'm pulled to weaving and malas and painting, so much, and there are days where I find myself lost and blissful; and those are great days.

However, the forcing life or creativity, just doesn't work for me.  Because I pour so much of myself into everything I do from taking care of Steve, to making our environment inspiring and interesting for us to spend our days in, to taking care of the pups and the garden, to every creation I make; I listen to myself and flow with life.  When I go against it, life shows me.  I'll fight with Steve because he's interrupting me while "I'm working" (I mean really), i'll make a mala and it's so half-assed it breaks (what's the point in that), I write crappy writing, or create something really uninspired and unoriginal.  

My way of living may not meet society's standards as to how one should consider oneself successful or not; and that's okay.  It's what works best for Steve and my life right this moment.  If you ask Steve, he can attest to my kindness and patience levels increasing as I allow myself just to experience life rather than constantly chase some number.  Trust me I'm still creating magic, and making my print on the world; I'm just not loosing myself and the ground I'm standing on in the process.  My life (and Steve) thank me for it.  

Monday, May 9, 2016

the okay-ness of nothingness

As I sit here starring at a blank blog page, I think, "I have nothing to write about."  Mind you I have a journal with about 20 blogs written as ramblings that just don't seem appropriate for the day.  

The thought of following up the blog I wrote Saturday about the documentary is daunting and leaving my mind at a blank.  If you know me, a blank mind is more unsettling for me than a racing mind.  I've learned to deal with the racing ideas and thoughts, and how to categorize, and sort through them.  The nothingness is too vast.

Getting up early to get back on track with yoga and meditating and blogging, and starring at a blank screen with lots of puppy distractions, listening to the pond going and the birds chirping, watching the squirrels bravely climb limb to limb to the bird feeders, watching the trees dance in the wind, and feeling the brisk morning air; it dawned on me.

Nothingness is okay.  I'm peaceful right now.  I accept this moment; this vast empty space right now. After all that's what meditation is to be teaching me right?  To slow down the thoughts to create the space.  Knowing the space will soon be taken up by Monday routines between bath time for Steve, and dressing changes, and our weekly nurse visits.  I will sit here and appreciate the nothingness.

Because these moments are fleeting and they aren't sent to create panic, they are sent as refreshers.  So often we miss the cue.  We get flustered by the lack of ideas and momentum that we forget to embrace the silence.  Embrace the nothingness.  Allow it to be the refresher you need.

So today I'm taking note.  I will sit in the silence until it's time for Steve's bath, and I will soak up every bit of the refuel that life is offering me in this moment.  Hopefully by sharing, others can experience the beauty that nothingness brings as well.  

Saturday, May 7, 2016

documentary feels

So I know I've gotten a lot of feedback on how surprised y'all have been that I haven't blogged and it was documentary release week!  

First I'll tell you why.  

So we have been looking forward to the documentary to be released for the world to see since we started making it.  It's our first project Steve and I worked on together that sparked a lot of other incredible, deeply meaningful projects.  It became more and more as we continued to work together. We both had so much energy into the release and the social media push and trying to stay in the moment and really enjoy it.  We couldn't do anything else.  Literally the day before, the release day, and the day after.  It was wonderful and lovely and peaceful and heart bursting.  Finally we are regaining some energies and able to do other things aside from taking care of Steve and documentary.  

People who don't see our lives, may not realize the mental energy of taking care of someone is often what drains us, before the physical energy it takes.   I literally put my every ounce of energy and love flowing into Steve; even when I'm out of the room we are connected.  Unless you've seen it, you don't know that I'm constantly plugged in; and that's why it's so vital for me to take time to play in the yard, paint, journal, day dream, meditate, etc.  I need to stay fueled to keep Steve going. So to those of you that have been thinking, "Where's her blog?"  "Why doesn't she create more Hopie Hippie creations?" you know. 
I intentionally don't pile too much on my plate, I do what I can and follow the ebs and flows of life.   When I'm energized it I give thanks and use it all up and when I need to rest and reset, I do. 


People may not realize Steve & I got married after 6 months, until you watch the documentary.  That bond you see Steve and I have today, this documentary documents the beginning and progression of it.  The ability to sort of know what he needs before he tells me, that wasn't just there.  It had to grow.  You see the early clips of Steve and I just married, newly diagnosed, and newly sharing our journey.  I look at those 2 and I don't recognize them.  That's how much we've grown since then.  It was beautiful to watch the film again with Steve on Tuesday.  Because we could see how much we've gone through and celebrate that despite all of it, we are closer today than ever.

The fighting scene didn't make me cringe this time watching it, because the idea of fighting is different in my mind than it was back then.  A fight doesn't mean you don't love that person.  Fighting means you love them so much you have to say something.  You know that you can express your true, real life emotions and it's okay.  Fighting isn't unhealthy.  It's process.  Shoot, Steve and I still fight. I was being honest when I said in the documentary the caregiver/wife balance is a struggle.  I have to work at it daily.  Through each fight though Steve and I grow because we are both not only showing each other what's bothering us we are truly showing ourselves.  

The documentary still made me feel all the emotions as they do most; the tears, laughter, hope, anger, faith, inspiration.  Yes it's our story and I've watched this film probably 100 times, but honestly Steve amazes me so so so much daily.  Watching him amaze me at every step of the process as much as he does now, was a poignant reminder of how precious life is.  A reminder of how thankful I am for every single thing in my life.  As Steve progressed and continued to loose more of his freedom to ALS he grew in light.  He accepted it with a grace and peace that transforms everyone's life that it touches. I am an obvious example of this.   

I had so many thoughts going through my head watching the film again, as I do with everything in life and I wanted to share some of the poignant, funny, & maybe not so obvious ones:

"Steve's beard changed as frequent as my hair did." 
"Thank goodness I actually decorated our house."
"I miss Steve's voice."
"We did such a good capturing his voice going and the stages."
"Steve on that beach...<3<3 those are heart eyes."
"Pebble beach Steve=awakened."
"You can ACTUALLY see Steve giving me purpose on the screen."
"Singing Steve was my favorite, always singing me a song."
"Ahh Wanee, dancing with Franti; everything about that day was awesome. Coolest day ever."
"Sorry all my ex boyfriends.  FYI mostly everyone meant the Atlanta ones.  Oh and to all of you, thanks for being assholes.  Truly how would I have known we weren't meant to be together and find Steve other wise. :) Real talk." 
"That ending. I remember this day.  The last few months of Steve's voice.  Such high emotions and there's Steve being beautiful and caring more about others having to experience this and not him...ahh Gets me every time.  What a beautiful man." 

Haven't watched:

If you have supported us in this journey in every single way....thank you!!!!!  You all have made this possible, it was a beautiful experience for Steve and I to see this get to this point together.  There's been so many scares ALS has given us with Steve's health, and here he was healthy and in our magical home for this day.   So thankful. 

We have a few things coming for you this next week.  Stay tuned. ;) 

Tuesday, April 26, 2016

The teeter totter of life...

Yesterdays blog rattled a few people, and if I'm honest it rattled me to write it.  So how does one follow up such a raw blog...

By coming back to the present.  The now. It's coming back to the fact that for now Steve is alive and fighting; and while he's here, we have work to do. :)

Obviously all of our futures are unknown, and ALS and it's nasty little curve balls are in the abyss of the unknown; it's a poignant reminder that all we have is this moment.  I plan to make the most of every single moment I'm given.

In life it's a balance of preparing for the future while staying present in the moment.  This moment is scattered with things that happened in the past as well as things that have yet to happen.  The reality of the future and the possibilities are there, but what's important is not letting them swallow the actual moment.  

As a kid I used to try to walk the teeter totter like a balance beam and when I would have it where I was in the middle and both sides were up and still; is that balance I'm looking for in life.  Where you know at some point this is going to happen, because all this happened in the past; but you're so present that this very moment feels magical and it's all you focus on.

That's my ultimate goal in life, which isn't always easy.  Because sometimes the past or future are so huge they overshadow the now.  Coming back from say the conversations I've had with Steve, about me having to realize that at some point yes he will be done, to then us truly living in the now; takes work.

So how do we do it?  To be honest that's when we reset with a meditation and a dance party.  Yep both.  After we shake off the harsh realities of ALS, it's not that we go into denial; it's that we learn to live fuller lives because of the facts.  We cherish every single day as we all should (totally quoting Steve from our documentary, which have I mentioned comes out May 3 :)).  It makes the moments much sweeter. 

So while yes I am constantly working to be strong enough to stand by Steve's every single choice he makes. RIGHT NOW I am going to soak up every single minute of his energy, of his love, of his inspiration, his wisdom, his beautiful mind; because this moment, today; he's choosing life---and for that I'm thankful.  That's all that matters right now.  Is the now.  

So for everyday I get I will count my blessings and soak it all up like a sponge, I will stand beside him whether I'm ready or not for the future, and I will still hold on to that hope; because it's all I can do. 

Monday, April 25, 2016

Don't freak out...

I've been a little silent on the blog life since the hospital trip and being home.  I knew my first blog post was to be about the past visit to our home away from home; but I needed to process it.

Something happened this trip that hasn't happened in previous ones that took me a little extra to digest.  Steve reached his breaking point.  Not just a fleeting moment of "I can't do this."  His actual, "What am I doing?  This is crazy breaking point."

If you follow us on Facebook you probably read his status, if not; here:  
This last hospital stay, I said I'm done with this life to hope. I said to call just call my parent's so that I can say goodbye to them, so let me paint you a picture of the last twenty four hours. I just found out that my pick line had yeast infection in the site that was pumping yeast in to my blood stream, so they pulled it out ok, so I'm feeling good with this, then they tell me that my liver enzymes are going down crazy fast because of the tpn food's I'm on, and that I'm not really allowed my pain meds. So, they need to get my food in me, so the simple things will be to stick me with an IV, oh yeah, but they already shot all of my veins through previous visits etc. So, they sent in six of their best at finding veins. Well, they didn't tell these brave men and women that I swollen to double the size of my normal self, so they were putting the turnicut on so f'n tight and digging in my arm's, hand's etc to find a vein. This went on for five hours or so. Mind you I'm not allowed pain meds throughout this ordeal. I was stuck upwards of seventy times in that span of time with the digging around. So, lets go back to when I said MERCY God and to hope. Okay I woke up at two in the morning with a one hundred and four degree fever. So f'n cold I was, and the only thing they can do is a freaking ice bath. So, hope and my nurse KAY were dumping ice on me and putting ice soaked towels on me that would be hot to hold after five or ten minutes on me. I gave up for ten minutes, thank you God that my dad didn't answer the phone calls or I would be another stat on als's board. I'm so happy to be alive and I love Ya'll so so so much, and i'm to my wife who kept putting ice on my naked body even as I was giving up, you're my angel, fighting through your tears for me, I'm so so lucky you're in my corner, I love you so much boopy poopy. Als is not going to win, we have a new plan. God bless you all, I love Ya'll so so much and thank you for your support!!! 

(Steve meant his liver enzymes are high not dropping.)  

So since being home from the week long hospital visit, I keep waiting for Steve to perk back up to full out positive Steve.  However, it hasn't happened like it has with the other trips.  He's still fighting with all he has but his mind is tired.  When his body has been taking a beating his minds always gotten him through.  I don't believe Steve is giving up but I can see this disease stealing that sparkle little bits at a time.  

So how am I dealing with it all?  All in all I would say so-so.  Part of me is working to build him back up; both his body and his mind, where the other part is trying to allow him to feel however he wants.  This has always been his journey, his choices; and it's hard not to want to force my "stuff" onto him.  I want him to feel the same way as me, and that's not real life.  

Up until now, my usual motivational speeches, silliness, and meditation ceremonies would always help him come back from the darkness that is ALS; this time it's really up to him if he wants to come out or not. It's teaching me to step back.  It's teaching me to let go of control.  It's teaching me to accept.

Accept what exactly I don't know, but it boils down to this.  When I said yes to marrying Steve and going on this journey with him, I said yes to supporting his choices in this.  It's not about me.  I battle the it's all about me Leo side in me daily, so this one is hard.  

Obviously, this isn't a blog to get everyone stirred up; you read it Steve's still here and he's still fighting this beast.  This is a dialog about me accepting the reality of , "How long can one actually withstand this kind of a beating."   It's about the impermanence of this life. I always talk about taking in nature and all the beauty because it's not permanent and will go away, and truly try to view our lives with that in mind, but secretly (or maybe not so secretly) I've always believed ALS would have a cure by now.  I did.  Sounds crazy to those who have gone through this for 20-30- even 40 years for my unreal optimism of a cure/treatment; but I truly believed it.  

Life with ALS is beyond what you read about ALS symptoms, it has layers and layers of complications. When you stump and awe your medical team because of unseen before complication after complication; it's exhausting.  I have to stop fighting the acceptance of this reality because when I signed up for this, I signed up for standing behind Steve's every decision, and if one point he says, "Okay I fought the good fight, and I can't physically do it anymore."  I have to be okay with that.  I just have to.  

Tuesday, April 5, 2016

Team HOPEforSteve medical edition

So as we are in the hospital we finally found some stability and answers so I finally feel the energy to allow the words to come. 

So I wanted to share with those new to our story some of Steve's ALS story.  If you've followed us a while thanks for being with us along this roller coaster ride.

So Steve had been experiencing symptoms for almost 5 years before diagnosis.  He was misdiagnosed with every single symptom until the falls started. So once Steve received that diagnosis the beast took over.  Here is a brief timeline. 

August 2011 diagnosis
July 2012 After months of falling Steve finally accepted the wheelchair
Feb 2013 Feeding tube was placed as Steve's swallowing was beginning to get worse and he continued to loose weight.  The feeding tube got a terrible infection 2 days after placement.  
*This was the start of infection phase. 
From there out, UTI's every other month. 
May 2013 We came to the hospital for pneumonia and after Steve died on me twice he ended up with an emergency tracheotomy.  
June 2013 First diagnosis with lung infection Pseudomonas & MRSA
*This started our Bug phase. 
June 2013 Steve also began to vomit after meals where we spent a long 2 months every other week in the hospital because Steve couldn't keep food down and would aspirate and end up with pneumonia and of course pseudomas & MRSA were on board.
August 2013 after 2 months of fighting with the insurance company Steve was 67 pounds and unable to even tolerate water.  I took him to the ER while refusing to go home without IV foods TPN, 
*This started TPN phase. 
Feb 2014 Steve made the decision to go on the vent full time after a rough few months with breathing.  
*This was the start of progress phases 
After this the TPN and the vent helped Steve immensely, obviously to go from 67 pounds to 155 * probably 10 of those pounds being edema. 

During this timeline at each phase we encountered different doctors telling us that Steve was dying and there was nothing they could do for us.  We encountered the several stories that went something like, "Well, Steve probably won't fully come back from this...."

Well, he did thankfully for so many reasons, but one important reason was finding Emory Johns Creek.  We sorted through doctors to build us the best team.  Including: Intervention Radiology who are the best in the state to help with feeding tube & picc line, Infectious Disease doctor, Pulmonary, , Gastroenterology doctor, Urology doc, Primary Care doctor, an incredible pharmacy team, and a great hospital with skilled and incredible ER and ICU staff .  

So the more we come to the hospital the more complicated we've become.  From holes in stoma, comas, stomach acid leaking from the stomach, to building antibiotic resistance, to sepsis, and yeast infection in the blood.  

Today I was expressing my gratitude to pretty much everyone we saw because along the way a lot of people have given up on us but the Emory Johns Creek staff and our team we've built has never given up on us.  Essentially Steve's one of their most long term complicated patients and they never give up on us.  They will do everything possible to help us to the other side of each hurdle.

One of the doctors replied to my thanking them with a sincere, "We aren't doing it alone, your love heals him too."  

From staff bringing me meals, gifts, and just coming to show us their love, to them working diligently to help us figure out each new complication we bring.  It's a blessing.

I hope everyone can find as supportive of a team when facing an awful disease, like ALS;  and all the complications it brings with it.  If you've been told by a doctor that there was nothing they can do for you, find someone else.  I promise good doctors exist.  I know because we have a handful of them.   

If you want to know more of our journey in detail make sure to purchase the Hope for Steve documentary that will be available May 3rd on Amazon, iTunes, and Barnes & Nobel.  Also, stay tuned for my book hopefully coming next year. :)