It's all a distraction

After any amount of time I'm off social media, I often get asked why I take long breaks from logging on?  I love a social media break, it really helps me observe what I do with my time, and gives me a lot of insight on how I can make better use of my time.   I have so many important connections I have made on social media, and find the medicine of it to be important, but for me personally if I'm not careful I get totally out of balance with it.  I'll give you some of my reasons and lessons and let me know if any of it resonates with you. 



I have 5 signs that really give me the flag that it's time to take a break.

  1. When I find myself distracted by every sound, notification, social trend, of having to follow a certain persons story, to the point that I find myself 45 minutes later having realized I just spent a huge chunk of time, just shooting hearts and emoji-es all over the place.  Of course I don't want to be 100% disconnected, we already are pretty hermit-ed here not leaving the house; so I only tend to go rogue when my addict comes out to play. 
  2. I really like to connect with people in person, but sometimes I won't reach out to a friend or loved one because I see what they have going on, on social media, I think, "Well I don't have to."  It's only when I step away that I realize how much I crave true connection and while social media lets us story tell and share updates, it isn't the kind of connection I want to have with my friends and family. 
  3. When I find myself admiring what others are doing so much, I forget to do anything myself, if I'm not careful I find myself admiring everyone I love to follow that I find myself here with a day of doing nothing but scrolling on my phone. 
  4. This one is a big one. Hard to admit even. There are days where I will find myself genuinely upset that people didn't give me the response I wanted on a post, or upset when people don't buy my art, or read my blogs.  When that happens I know my reason for doing and being is very much so out of alignment. 
  5. Before this last social media break I observed myself, reaching for my phone at any single pause.  Whether it be a commercial, waiting for Steve to type, when I was blocked while writing, or literally any moment in between. I would reach for it, get lost into it for a bit, catch myself, and find it hard to get back on track. It was a habit, and one that took me stepping away to break; and will take me continuing to be mindful of. 

I find that in our world today, distractions are everywhere.  When you drive in your car the information you take in from all the advertisements everywhere (unless of course you're in the country and if so I know you're loving it, I would :)).  When you check your emails, that 30 junk emails you end up deleting, the social media notifications, the news (that's a whole separate blog that I will write for you soon), ... I feel like this list could continue but you are aware of what your distractions are, I don't have to tell you that. 

What I can tell you is, that the three weeks I stepped away from social media, helped me really tune into how I was spending my time.  I found myself getting so much done.  I of course, had to stop myself from reaching for my phone maybe 500 times a day, but it was powerful to see just how often I do that.  I have written on this before, but I have a way of blaming other circumstances and people when I don't get my goals for the week done. *important side note:* I'm of course not promoting all this doing and hoping people forget about being, but even my down time isn't well spent scrolling on the phone;  drawing, art, time in nature, reading, journaling, writing out all those ideas you keep saying you don't have time for, you fill in the blanks here.  My down time is better used elsewhere.  Truth is it's no ones fault but my own if I don't crush my week.  Steve doesn't distract me by needing me every 30 minutes (average), my phone does. 

Interestingly after being off for a week, friends who I had been hoping to hear from were reaching out, I was getting to catch up with friends, I was connecting with those around me again.  I think this is really important to say, because I know I'm guilty of it, and almost everyone is on a small scale.  When is the last time you actually spoke to someone you follow closely online that you consider a friend in person? OR... When's the last time you went to visit that person who is stuck in bed?  It's interesting that people think because I'm so good at sharing our life that we are really connected.  Are we?  

There's so much noise going on in our world right now, it's a bit of tumultuous times, a small step back however, can do you a huge favor.  When I take a social media break, I should add, I take an all media break.  It is okay to step away from the resistance (whichever side of it you find yourself on) and check in with you.  Sometimes I wonder how many people are just regurgitating information that is so frequently being handed to them instead of forming their own opinions or beliefs.  I know I can fall into that so quickly and when I shut it out, tune in, read, actually do my own quiet research; I know my truths.  I don't have to feel swayed by all the noise around me.  In these days, this feels so vital. 

So if after reading this you feel like maybe you need a small break, I highly encourage it.  You choose your length, you choose the rules; that way it's what YOU need.  I assure you, you'll find yourself connecting with life in a way that just doesn't happen when we give in to all the distractions. 


When impermanence is your reality - Where Steve's health is today

So if you follow us on any social media you know we had a recent hospital trip.  It was brought to my attention this trip, that I probably haven't fully explained in one place where Steve is currently health wise, so allow me to attempt to fill in all the blanks here.  


Steve was diagnosed in August of 2011, after a year of misdiagnosed symptoms.  Upon diagnoses he started falling more frequently, and was loosing a lot of his muscles to atrophy. Late 2012 Steve had a feeding tube placed, as he was starting to choke more, that became infected the same day (insert infections that NEVER left). It was April of 2013 that he went into the hospital for pneumonia where he coded twice, actually died and was resuscitated once, that ended in him getting an emergency tracheotomy.  At the time of surgery Steve was on his decline to below 100 pounds.  We had no idea then what exactly was going on with his stomach, we assumed he was using most of his energy to breathe and that was the main cause of his weight loss.  Steve was not ready for the ventilator more so mentally than physically at that time, so he waited until October of that year to really begin to explore the vent.  He started on bi-pap settings, and quickly reached the point by 2014 where he needed full ventilation.  

During all of this Steve began vomiting most things that he would get in his feeding tube.  We initially thought it was just he couldn't tolerate formula or traditional tube feedings so I began to make his own food.  In early 2014 after a hospital visit where I expressed my concern for Steve's vomiting, then aspirating, developing pneumonia, and being hospitalized pattern we were in.  He was rapidly loosing weight.  Spring of 2014 Steve reached 67 pounds and I couldn't even get water into him, so I took him back to the hospital after only being home one day in between and I said, "We aren't going home without IV food." 

That's a very brief back story but currently Steve sits at 150 pounds (although maybe 30 pounds are the fluids his body holds), and I will speak on where we are currently.  Steve's stoma (Trache site) has stretched he has the biggest size trache (10) and a hole big enough you could stick your pointer finger in it along with his trache (don't worry no one does that).  So many people ask me how that happened?  It was the perfect storm : getting trache, immediately followed by loosing drastic weight, violent vomiting with aspiration happening, followed shortly by gaining significant weight, receiving all of his nutrition via IV (it may have saved his life but it only goes so far for skin integrity), and the use of peroxide (I should write a post on this alone before we knew better we were told peroxide was good for trache care, peroxide is terrible for your skin especially broken down skin-please never use it); so all combined led to a very stretched site internally and externally.  

2 years ago Steve developed anemia of chronic disease, again TPN (IV food) while it sustains him, it only goes so far. A year and a half ago Steve developed his first pressure sore on his left sit bone after being on the gurney in the ER for 6 hours.  It was set back exactly a year ago while going to a procedure and it became a stage 4 (all the way to the bone).  As of this hospital visit his wound is OFFICIALLY HEALED! Yes we are celebrating but also very well aware that the way a 4 heals means that tissue is very fragile and a recurrence is almost expected.  Regardless though, he has proven he can heal!

Also a year ago Steve's right lung began collapsing one lobe at a time.  It's suspected this happened because of constant pneumonia and turning off his wound.  So there we were with a stage four wound on his left butt, and a fully collapsed lung on the right side.  Normally you would want to be turned off of either of these, but that was no longer an option.  Steve has championed through these.  His trache stoma isn't the only "hole" in his body that has stretched because of extended length of use and the way his skin integrity is compromised. His feeding tube site and catheter site are both using the largest sizes and still leak.  

A year ago I began to finally get Steve's stomach to tolerate little bits of food (he has a G/J tube so I skip the GI and go straight for the Jejunum).  Since then, the times he can tolerate foods his infections do better, he doesn't need blood transfusions, and over all he has more energy.  I wouldn't be surprised if it also played a role in his wound healing (also our IV team increased vitamin C to help as well).  This week since being home is the first his stomach has tolerated foods since getting his gallbladder removed end of August, and for that I'm grateful.  Despite only getting roughly 80 CCs in him a day (broken up in 4 doses) that little bit at least builds his hemoglobin and helps him have energy to participate in his day.

Needless to say we are complicated so when we go into the hospital these days it is truly us just following theories.  We believe this last visit was mostly him needing a little antibiotics and extra TLC to fully recover from that gallbladder being removed.  I was worried he was reacting to his TPN, because he would have episodes at night only, where he became very anxious with tachycardia.  Which comes first the chicken or the egg here, is it anxiety or the heart.  Still unknown, truly, but this visit all of our theories were proven wrong, and somehow he just adjusted.  If you know anything about human anatomy, then you understand that Steve's heart is vulnerable (for more reasons aside from living with complications of advanced ALS) because of the way his lung has collapsed.  Your lungs protect your heart, and slight tachycardia is his new norm, so when it goes up we are talking the 150's.  

Of course there are hundreds of reasons for increased heart rate and Steve obviously has a lot that could be the cause, but for now we are thankful his body sorted out whatever it was.  Sometimes we have to admit we don't understand what's going on in Steve's body; which isn't an easy thing to do for doctors or me, but we have to.  So that's where we are.  The impermanence while there for everyone, that's already increased from a diagnoses like ALS, is really really real in your face these days (our face).

So if you're reading this and you maybe haven't spent a lot of time with Steve over the past few years because life just keeps you busy.  We understand, we have no hard feelings, but allow this to be a friendly reminder to come now.  His well-being requires naps but right now it also requires interaction with people aside from just his wife, immediate family, and our aide; so please come. He obviously can't tolerate a party full of people, so when you message me don't be surprised if I throw out dates where he doesn't have any visitors, rather than taking the last minute "can I come today". :) 


Through shadows and in the light.

Today is Steve's and my 6 year wedding anniversary.  Wow! 6 years.  When we got married it was very unknown if we would even get 6 years.  ALS and the stress it brings definitely tried to stop us from making it through these 6 years.  

Photo: Raymond Adams 

Photo: Raymond Adams 

The past 6 years I've been through more with this man, than I've been through in all my life combined.   Even though some days I feel the weight of it a little extra, I'm thankful for it, as I wouldn't be who I am today without this journey.  

The further along this journey Steve and I go, the more I see how our union was to not only help share stories of love and overcoming challenges with the world, but also to help make us as individuals meet our highest potential.  

Prior to us meeting Steve and I were not exactly on a path towards progress.  Following that pull towards each other, trusting it after such a short time and deciding to face difficult circumstances together catapulted us into possibilities we never saw possible for ourselves. 

Suddenly we were being shown our capabilities and opening up to pieces of ourselves we were closed off to.  Lots of growth doesn't come without fights and challenges that you need to overcome.  The trauma you choose to endure going face to face with ALS only makes you a better person going through it.  If you know someone in an ALS journey I know you'll agree.

Often times we know (both being intuitive) that people question our choices.  They question our love and our life, and sometimes it makes us question it.  At the end of the day when it's just Steve and I, we know that our love is beyond just the heart opening growth we get to experience it's about so much more.  We together serve a purpose that's so profoundly needed in this world, and remembering that gives us the fuel we need to keep overcoming these challenges. 

The beautiful gift this life has brought is the understanding of how in our lives we are all each others mirrors.  Showing us where we need growth, where we shine, where the shadow lies, and the light hits.  Steve and I mirror our strengths to one another, we mirror the ways in which we are capable of doing anything we set our minds to.  We also mirror our mean streaks, our love for calling people names, our addictions, need for control, and our need for attention.  

photo: Raymond Adams 

photo: Raymond Adams 

These shadows aren't there to break us apart, although it's really f'ing hard not to let them sometimes.  For Steve and I , what I consider the most fortunate with our love and life is that no matter how difficult and dark we've gotten our strength has always persevered.  Just like we come out of these hospital visits a little stronger so does our love through facing ourselves in each other.  The selves we want to run far away from. 

It's a blessing to be able to grow with someone and to be able to watch yourself AND your partner break through old patterns that were leaving us in the shadows and walk into the light together.  Our marriage on the outside is an inspiration because we choose to keep battling this journey for our love.  On the inside here it inspires me because we have fully faced ourselves, faced one another, and have remained in love.  That is what I love about us.  If I could add anything to our vows I would add, that I promise to stay with you through the shadows and in the light. 

photo: Raymond Adams

photo: Raymond Adams

Self encouragement wins today. <3

I just finished packing before sitting down to write this blog.  Oh, where you going Hope, somewhere fun? 

Nothing fun, but some place essential.  A place I'm super thankful for. Today we are taking Steve to the hospital.  I have a few things to finish up before we go so this will be a short blog.  This will be a blog where I offer myself some encouragement today. 

I would like to say that you're handling this well, Hope, and I'm proud of you.  I do NOT normally handle hospital visits well.  Lots of crying, a bit of screaming, and loads of complaining.  To Steve of all people.  Like he wants to be going there any more than I do.  It's something that I always feel super shitty about upon returning home from every hospital visits.

Processing anything prior to a hospital visit isn't happening while at the hospital.  What is happening a lot of tuning in to Steve to help guide the doctors, a lot of comforting and wiping tears from Steve's eyes, a lot of advocating, and the growth is the most I've experienced in my lifetime.  Hospital visits are holding onto what brings comfort and surviving, for both of us.  

So prior to going in this trip, I would like to take the 15 minutes it's taking me to write this blog to send myself a little self love.  Because WE ALL NEED to be doing that.  In these days more than ever.  So take my cue.  Take 15 minutes today and give yourself a little pat on the back for what you are doing well with in life right now.  YOU DESERVE IT. 


Still processing....


I come writing this after a night of little sleep.   ALS goes against our human desire to understand things.  So many things happen within Steve's body that even the most trained doctor's don't understand, and in the middle of the night, when I'm trying to heal from a 5 month ear ache, I don't understand a lot.

Why does that pursuit of understanding tend to drive me in the opposite direction.  In fact it drives me more towards crazy town.  Why?  Why is it happening? 

Sometimes you just don't need the why, and that's what life is very clearly teaching both Steve and I.  That, and how to endure.  It's been ingrained in us all to distract when we are in a moment of suffering.  However, at 3 AM when there's no comforting someone, and you're also miserable, there is no distraction.  You have to sit and be there. Prior I allowed these nights to tear me apart, I mean I would go on an award winning rant on how unfair it is that this is happening to us.

I'm unsure if it's the state that our world is in right now that's given me some perspective on how despite a rough night we are incredibly blessed, or if it's exhaustion just not allowing the same reactions I once had.  I would like to mark it as growth, but if I'm honest I know I still have more work to do there.

Suddenly hours into the Steve episode, God spoke to me.  God does that to me a lot these days, and it's a rather nice thing.  I'll ask, and actually listen, and often I get a response.  Suddenly I shoot out of bed, dizzy and all, and turn off his TPN (his IV food) as Monday nights are his lipid days.  Within 5 minutes he was better.  Well, one why was answered, but now what?

Can one live without any lipids? He's down to one bag because this has happened more often than not when he's getting his lipid infusions. Which speaks to the exhaustion that it took me hours inside of this episode for me to figure out what was wrong.  As Steve sleeps off the night, I write it off; not in the figurative sense here, I mean actually pen to paper writing. Which brings me to the point of this blog.

How many of us carry around loads of unprocessed feelings, because we are too caught up in our lives and our routines to carve out any time to reflect?  How much time do we give ourselves to sit and process what's going on and how we feel about it?  So many things are happening around us, and I see it being handled in many ways.

I see those showing up for the oppressed resisting what they see as unjust, I see a lot of people throwing around words that appear to be regurgitated news stories on their responses of the resistance they are seeing around the world.  I see some people ignoring it all, making fun of it all, and some just keeping their opinions to themselves ( which if you don't speak out it IS TOTALLY okay by the way, don't allow someone to tell you how to do you). I see groups of people hurting from years of unjust shit happening, and groups of people feeling hurt because they are feeling to blame for the hurting.  In the middle of it all, what I see very little of, is people taking the time to process how THEY feel.

Not how someone told them they feel, or something they heard on the TV; but how they really feel.   When is the last time you sat aware of all that is going on around you and processed it?  If your answer to that question was I did it this morning, well then I love you, and I'm proud of you for showing up.  If it was maybe a week ago, a month, or maybe even years; well I still love you, but also suggesting maybe it's time you show up, and show up regularly.  Show up for you that is.  This one is for you.  It will have a ripple effect on those around you, but that's a bonus.

So many of us are walking around with unprocessed feelings, and it's stopping us from showing up 100% to our lives.  I say us, because I have to remind myself everyday to process it.  Trust me, I want to run away and hide from it.  I want to hide my head under the covers some days and pretend that none of it is really happening.  However, that's not how life works.  Well certainly not how a life actually lived works anyways.  

So how do you want to live?  It's a choice.  What a beautiful thing to have the privilege of choice, it's not one that is given to everyone.  Revel in that, and then think, what kind of life do YOU want to live?  Not what you see others living, or your parents told you to live, or hell even I am.  You don't want to process life, then don't do it.  Just hear this one last thing.  The process is beautiful.  It helps things make sense that once didn't.  It may not happen right away, and some days in your processing all you're doing is just actually observing all that's happening.  Then a week or two into your daily process you find yourself assimilating it.  Things will suddenly make sense, and you'll gain perspectives on how to endure in the dark.  

A refocus.

You can either spend your energy focusing on what not to do OR you can focus on what to do. 


Turns out this blog hiatus I've been on taught me something different than I was anticipating. Instead of finding a list of things I should be letting go of, like I have been doing for years, instead I found a shift of perspective. I've learned that instead of spending my time focusing on what I need to let go of, I am better served by focusing on what I CAN DO in my life.  

No more trying to break some habit that isn't working in my life, instead I'm focusing on having more of what is working. Because when you're focusing on what it is that inspires you, what you want to create/do in life, and you're really putting your focus there, you no longer need to focus on what not to do. Because you're where you need to be; In that moment. What doesn't serve you goes away naturally, little by little. 

 As I'm putting my energy into what is flowing nicely in my life, to my surprise I found habits I've been spending years trying to rid, just naturally going away.  All this time I've been doing the work to let it go, tracking my habit, noticing my triggers, doing the steps to stop it, forgiving myself when I fall back into the habit, getting up, starting again.... 


Turns out all I really needed was a refocus. A shift to focusing back on what I CAN DO, what I want to do, what I'm pulled to do. Focusing on doing rather than not doing, seems so common sense, yet I've spent years waiting to let go of some stupid habit to be ready to start doing what is I should be doing. Writing. I've been waiting until I felt ready. I've been waiting to feel READY to do. 

"I'm not inspired," "I'm not in the flow," "I don't have words," all reasons why I wouldn't blog, I wouldn't work on my book, and eventually because I was finding it acceptable to not show up there, I would stop showing up in my journal as well.  I adopted morning pages after reading, The Artist Way, by Julia Cameron 4 years ago.  It changed my life, and brought me back to myself in a child like way. Journals saved my life as a kid, and again as an adult. Eventually I became so focused on what wasn't working I forgot to focus on what did.  WRITING. 

So here I am, after a refocus, and coming to you honestly. My days are still uncertain, because Steve's days are really never the same; but I've realized something, much like my focus on what isn't working has been a crutch for so long, so has my "unpredictable days".  I would think, well there's no way I can ever fully commit to these goals I have, because I just don't know what Steve will need from me or if I will have the space. Turns out it's all been a bunch of BS excuses. 

Do I need to allow myself to have "off" days? 100%, we all do really; but where's the line that doesn't let you excuse everyday as an off day? I had no line. I had no limits to my excuse because I wasn't "ready" to be doing anyways, because I was still trying to learn how to not do...

The other morning Steve was convinced he needed to go to the hospital. He then had a rough bowel movement, that is complicated due to his gallbladder being removed. The first 5 hours of my day I was in the room with him. It's where I needed to be, my focus was on what can I do to help ease his pain, and help him get comfortable. Once he was finally through the rough part, I was able to leave, exhausted, I told myself, okay nothing on the to-do list is getting done and immediately went to my cushion.  After some meditating and some prayers, I pulled out the trusty journal. I did my pages, even thought they couldn't happen in the morning. I sat and wrote all the feelings I was having, and spilled all the words clogging my mind onto 8 pages of paper. After I immediately stood up, and completed some stuff on my to-do list, did laundry, cooked lunch, and sat down and worked on the book.  

Something happens when I allow myself the space to focus on what I AM doing in that moment instead of finding myself weighed down by a list of things I need to not be doing, or holding on to 5 hours of unprocessed feelings, I worked through them, and I had energy. Not the I just drank a cup of coffee energy, but sustainable flow energy. 


Recognizing this need to shift my focus has been a welcomed gift to my life, which helped me begin to see where I DO HAVE THE SPACE to do. Not only do I have the space, but this focusing on what I'm doing, it fills me up with more (space, love, energy,...).

So I leave you with some questions.  Where are you focusing?  Do you need a refocus?  What are you using as your excuses?  Leave me some comments, I would love to engage more with everyone reading my blogs.  What the world needs more of these days is certainly community.