Take me (them) off the pedestal

My number one intention with things that I put out in the universe; whether it be my art or my writing, is that I want it to make people feel something.  With that said, I do put in the work on my end to make sure the feeling I invoke is a positive one. I don't want to put out any more negative in our world; but that doesn't mean I don't feel it. 

This isn't the first time I've written about this.  Today while sitting and doing meditating I was sitting with what I was feeling this morning; which mostly to be honest was annoyed.  So often you all see me on the other side of any negative emotion, because I do believe that it's our own personal choice how long we spend in these feelings.  

I tend to do more journal work when I'm feeling this way, because I never want to put my annoyance on to someone else.  I already do it to Steve often without intending to, since we feel each other's feelings so much; I don't want to do it to all of you reading this.

However, as of late I'm feeling called to show more of the real, so here I am writing a blog while still feeling a little annoyed.  I sure as hell don't intend to stay here, and did work a lot of it out on the mat and cushion; and the rest will be taken out on dust bunnies & dog hair piles.  I am mainly sharing this, as I cringe with every comment on how selfless I am, or how amazing, etc.  I don't know if it's because I know I am as selfish as they come, and that yes I have my amazing moments, but also not so amazing; or if it's because often I see these people comparing themselves to me.

Then I'm put on a pedestal, that I don't belong on.  When you're comparing yourself to me just know that mostly the only difference between you and I, is that I work through the anger/annoyance/bitter/jealous/etc mostly with myself and not with a facebook post (anymore).  I still complain that I had to stay up past my bedtime for a baseball game, that suddenly mattered to Steve.  I complain about how people focus on things that to me don't matter as much as...say our planet.  I complain about that nurse that made that error, still, to whoever is at the house listening to me.    

I'm not perfect, and I hope this blog allows you to take me off that pedestal, and bring me back down to your level.  I'm on the same level as you, and if you think anything about me is amazing, it's because you have that in you as well.  Just don't forget the not so "om" like characteristics, they are still there too.  

In my journal I have a list of things to write on, but to me I feel like this might be the most important blog I could ever write.  It's not because I am on thousands of different pedestals, but because we all have someone up on one; when they don't belong there.  In this social media world, it's easy to feel like we aren't enough compared to someone else.  We aren't thoughtful enough, smart enough, pretty enough, doing enough, talented enough, ....

If you can learn anything from me it's this; you are enough.  Your are amazing. You are capable. YOU are important.  Put that focus on you, and not comparing you to someone else; and watch how much you will soar.    I promise even Beyonce has moments of feeling like she doesn't compare, but I assure you she works through that and that's how she produces magic.  What magic are you blocking?  I know you have it in you, and I can't wait to see what it is! 

Because "Are you F*ing kidding me," isn't punchy enough.

I have found there are only 3 responses that people can give me when I talk about our planet, climate change, pipelines, chemicals, etc.

 1. People love me for it. (Ya'all are my favorite :))

2. The 'Climate change would happen anyways, it has nothing to do with us,' people. (In my mind I hear, "eh taking care of the planet is too much work, too late to worry now.")

3. It's God's plan, do you know better than God? (Sigh.)

For months, I've been thinking of this blog, but all the words that could come to my mind would be, "Are you F*ing kidding me?" Except I really use the F word, which despite it being Steve's & my favorite word, it might give my momma a heart attack; so clearly, I had to work through my emotions to write something Mom friendly & really something worth reading at all. 

I struggled with words, until yesterday; It just came to me.  I've tried to edit to make this so punch worthy it sets everyone in their place, but truth is, the response isn't even for them. Those that don't believe it's important to take care of our planet sure as hell won't change their minds because of me.  It will sadly take someone close to them being struck with an illness due to chemical exposure, or a natural disaster to wake them up.

So for my benefit and those who care: 

When I drink my coffee in the mornings, I'm often struck with that overwhelming feeling of privilege.  Do you know how many people go without clean water in our world?  Would it be more punchy if I had some statistic, that let's be honest probably doesn't include everyone? Sure, maybe it would, but to me the fact that ANYONE has to go without clean water, without food because they have no water or resources to even grow their own, without clean air, because our consumerism is polluting our air; is enough for me to think we need to change.  I have found that unless people are directly impacted by something, they don't give it a second thought.  I'm not trying to sound judgmental here, while maybe I am judging; because I can't understand that separation.

This is where I then struggle, when people suggest it's God's plan.  Look I understand there is a certain peace and beauty to accepting what life brings you, no matter what it is.  I understand that I myself can't fix all these problems for everyone else, and for them to consume so much of my thoughts seems silly to some.  However, something else I understand clearer than the water pouring from my faucet is this; I don't have passions lighting my soul in vein.  God wouldn't put something on my heart, if there wasn't something that could be done.  I often think to myself one day I'm going to meet God and he's going to say, "So often I wanted to come down and tell humans, 'Hey, that's not what I meant, that way you interpreted that quote.'"

There's no way God would have it in his way that we have become so disrespectful of our planet.  The way you treat the Earth you live on is a direct reflection on how you treat others and yourself.  Don't believe me?  While I was at the hospital this last trip, I observed someone in the parking lot, that was visiting family I assume, throw their garbage out of their car window.  After they were out of sight I went to pick up the garbage, and made a mental note of that person.  Two days later I saw them waiting for the elevator; and as it came this person pushed past myself and an older lady to get on first, because of course the behaviors matched.  Sure this is one example, but if you pay close attention the line of respect is very thin. 

The reason I care about this started when I was a young girl, and I'm currently writing this part of my story for my book, so I will save the details; but reading scientific proof that illnesses like ALS CAN be linked to pesticides and other chemicals, just sealed it in for me. This is one of my life's purposes is to try to remind people; we can do better.  This isn't going against God's will, and it's certainly not accepting that it would have happened anyways.  If you actually looked at the facts being presented by true scientist and not just politicians bought out by the fossil fuel industry; you could really see how much damage we have done.

Truth is, that we are in a small window where we CAN actually do something.  So many people look at the issue and throw their hands up.  It's another example of why I need to put together my "be like Steve" blog.  To draw a comparison: For those of you who feel like the damage is too far, and there's nothing we can do; that would be like Steve saying, ALS has done too much I can't go on.

Does he say that? NEVER.  Not even in his worst moments.  If he can dig deep for this life, why can't we all do at least one thing to make it better for EVERYONE?  We are all capable of making a change, and I hope that alone helps empower you to be a part of the shift towards the positive.  I'll leave it at this; if knowing you can make a difference, doesn't motivate you to do so, then I don't know what to say to you.  

Happy THANKSvember

Happy November, or as a professor 11 years ago, introduced me to, Happy THANKSvember. :)

For 11 years now I have done my best to offer some gratitude for at least one thing a day for this entire month.  The past few years I've attempted to have a gratitude hour everyday, no matter what month it is, and I have to tell you, on days where I actually pause for some appreciation, are days where I feel happier.

There's been a shift happening this year, and if you're tuned in, I'm sure you've felt it.  I would like to consider it an awakening of sorts.  We are being revealed many truths about our world, some great awe-inspiring, and some disheartening truths.  Either way, I have found in this awakening that it is those who have any ritual, who have been able to ride the wave to the paradise island vs those who don't and remain stuck in the same place.

If you don't have any daily rituals yet, maybe one to consider would be, a pause for gratitude. You can do this in 10 seconds, seriously; so the excuse of I'm too busy, doesn't apply here.  It's simple, all you do is pause and say silently, out loud, a status, a prayer, a journal entry; whatever you want here, and say what you are thankful for that day. 

I'm here to tell you, that those in the toughest situations still find something to be thankful for everyday, and if they can; so can you.  When I said Happy Thanksvember to Steve today, with tears left over from his morning's clean up, he typed, "I'm thankful for this bed, and that I can lay comfortably with the doors open enjoying the birds and squirrels and this awesome weather." 

I plan to write a blog titled, "Be like Steve," this week, because truthfully I live by the motto in almost all areas of my life.  This is one small example, even after experiencing discomfort and pain, he finds the light in this life.  I'll leave you with one final truth, to sum this whole blog up.  The truth is, the light is ALWAYS there, if you CHOOSE to find it.  It's your choice. 

lessons in reactions and actions

I woke up with the birds and the sun today, and didn't feel like a zombie. I'm feeling more integrated into our routines at home, and that means time to blog again.  The two week stay at the hospital pushed us forward in growth in ways we didn't think we had left in us.

Steve and I were overwhelmed and a little weary to start our emotional hospital visit, and there were a few times we spoke with only tears.  It's such a hard thing to describe, going to bed weary one day, and waking up to feeling hopeful the next; but that's what this journey has been full of.  Thankfully in the 2 weeks we started weary, gained hope, and left the hospital empowered (even while beaten down).

After several recovery days at home, with little routine, yesterday was a breakthrough for us both separately and individually; and today as I sat to write, the blocks were all removed.  With no trace of them, I felt the words going into the keyboard, and the keys filling my soul with energy, one finger at a time.  

Yesterday when we woke up to something that could have easily set us to the shadow instead of the light, with how drained we both had become; it instead revealed how much power Steve & I have left in the fight.  In a moment where in the past we've both allowed this kind of "surprise" send us to our dark spaces; Steve to panicked, me to deranged, we instead lead with action. After discovering his catheter had leaked (and he was laying in a puddle of urine) knowing we had to turn and clean him with no help, to prevent the urine from soaking through to the wound; we just got ourselves a plan and did it.  

Afterwards we both congratulated one another, genuinely proud of how the other and each other had handled ourselves.  So often, I make it a point to share my shadow side with y'all, because there is a misconception that I am some sort of saint or angel; and I'm only sunshine and flowers.  It's true I aim towards the sun, but I stand in some deep shadowy spaces. Just as it's important I share the real, the unflattering, the raw; it's also important to share the growth, and truly to recognize it when it shows up.  

The truth is, it is because I face my shadow that I am able to shine my light at all.  Just don't let that light blind you, it's not all there is to me.  During meditation while I was reflecting on us taking action, I asked myself, "What made this time different?"  The realization that it was me, had me do a long reflection on how much my behaviors influence Steve's.  During our hospital visit Steve experienced an extended period of having a high heart rate, and a nurse said to me innocently, "Maybe he's sensing your anxiety..." 

I reflected on what she said for a while, as it's something that hasn't been suggested to me in some time.  Of course, this time of the heart rate was as usual a medication issue; but it didn't stop the seed from taking root.  There is a pressure when being a caregiver, that often I don't even recognize, until I reflect on the outcome of high stress moments.  It's often dependent upon how I respond, to how the course of action goes.  I stress- Steve stresses.  

Reflecting on yesterday, I feel a sense of accomplishment; mixed with shame.  So many times, looking back, Steve had a negative response to something, because I did.  Of course, I'm not in control of Steve's actions/feelings, and I'm not suggesting that I am; but when your life depends on someone else, it's easy to be influenced by that person.  There's a reason I've been doing so much work the past few year; not only do I deserve to be my best self, but mostly Steve deserves the best me.

Processing this realization has led me to an understanding of how much weight my choices carry.  There are so many times I'm trying to convey the importance of our choices, without always realizing I'm greatly talking to myself.  The unrealistic expectation of trying to behave in a way that is always calm, comforting, and empowering to Steve; is one that I saw myself beginning to create.  The truth is, I feel life, all of it, and sometimes I lead with feeling instead of pausing to lead with the heart & mind aligned; and I know I will make mistakes.  However, knowledge is power, and now I know what to practice.  

Steve's choice, not yours.

I knew at some point I was going to have to write this blog.  We now live in a world where people feel the right to speak their opinions on everyone's lives without reason or second thought.  The thinking of "is it kind or loving," doesn't cross most people's minds anymore.  Because of that the more you put your life out there, the more you become inundated with unsolicited advice and opinions.

So as a caregiver for a terminally ill patient, I know I am not speaking for just us, so yes if you resonate with this, by all means let me be the voice to stand up for you and your loved one. 

Almost every hospital visit I will get a few comments something along the lines of, "You need to let him go." or "Have you given him permission to stop suffering?"  Some say it in a message, or doctors in a casual conversation, and then some are so bold to comment it flat out on social media.

So often I wonder that if these people who are putting so much thought into our lives and decisions, even take a second to look inward and see what work they need to do.  As I sit and watch my husband choose to fight for our life together, I'm endlessly amazed and grateful.  Despite my extreme gratitude for his fight, it's also very clear that this is his fight.  He runs this show.  How beautiful right?  He gets to choose, and everyday he chooses life.

For those of you are misinformed: While Steve may suffer and have days where he feels awful, he has an equal amount of days were he is full of joy, laughter, purpose, life, love, visits, etc.  He is getting to watch his nieces and nephews grow up, he's getting to watch his friends fall in love and become parents, he's getting to watch me grow right before his eyes, and he is able to witness the impact he has on this world farther than you or I could ever comprehend. 

Whether in a struggle or on a good day Steve is serving a higher purpose than most could ever understand.  While his smiles may take effort as he looses muscle control, they are genuine.  Steve chooses this life, because he sees life as a gift, and one that if you can withstand the suffering the blessings will more than make up for them.

I'm not asking everyone to understand our journey, because we all have different views on life; it's what makes this world so special.  However, what I am asking is, for those maybe not so strong in where they stand, stop putting your stuff onto others.  Our life isn't for you to decide the direction.  In fact it's not up to you to dictate anyone's life.  Ever. 

From the hospital chair

I've been trying to muster the energy to type a blog for you all.  The hospital isn't exactly a space that cultivates inspired writing, but it's certainly one that is stretching and teaching me beyond my expectations.  I learn more in hospital visits, than I do in months at home some times. 

More about how much resilience Steve has exactly, about the disease, the body, about caring for Steve, and myself.  I gain a much deeper appreciation for my health and abilities each visit, and am reminded of just how very supportive our tribe is. 

I am shown my ability to feel others pains/joys isn't just limited to my people, I'm affected by every code I hear in our time here and find myself sending them constant love along with Steve.  Stress teaches me that unless I learn to include some love for myself in the mix, that it will destroy me. 

I find myself seeing things that may have bothered me prior to coming into the hospital with fresh perspective, and find that my view of the world changes with every visit.  That political facebook drama I got involved in, suddenly doesn't seem important anymore.  Nothing seems to be more important than being in this moment, and getting Steve healed. 

Mostly, I find myself feeling all the emotions in our short time here.  This one will be right around two visits before going home, and I've cried tears of sadness, frustration, and joy in this time.  The hospital truly helped me learn to feel, and really sit in the moments, even if it's uncomfortable.  Because of that, the joy seems so much more full and I feel my heart grow each time.

My patience is tested because of sleep deprivation. as well as things with Steve being out of my control; and I feel I reach a new level of patient sainthood each stay.  As well as finding myself itching to get deep into creativity. Feeling fueled, inspired, open, appreciative, and hopeful. 

It takes us getting back to stable before I can truly sit and process all that happened, and this visit in short was infection fixes, and wound care focused.  We've made huge strides in our two weeks, and it reminds me of what a blessing a good medical team is.  It takes a tribe to live this life, and ours is incredibly supportive; and their willingness to work through each layer of complication is astounding to me. 

While, I still have days of wishing Steve and I could go back to our lives before ALS started adding fires, I'm grateful for the lessons and growth this has all brought us.  Celebrating our 5 year anniversary here this trip, I found myself mostly overwhelmed with how fortunate I am to have Steve still here.  ALS has been relentless in it's pursuit to take Steve down, and he continues to somehow come through the other side with a grace and strength that is other worldly. 

Just, thank you.  Thank you God, universe, you reading this, our medical staff, our supportive community, our families; Steve.  I'm so thankful to sit here today feeling hopeful and happy about where we stand today, and that alone overcomes any exhaustion that I may have from this battle.