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. 

The morning of a hospital trip

While everyone was up watching the debate, I was pacing back and forth between suctioning & failing at comforting Steve; and maybe some screaming and crying a few times too. 

It was a rough night and after I write this, I'll be packing for a trip to Emory Johns Creek.  

I don't know what it is, but I break down in these moments; as Steve's desperately looking to me for comfort. I have nothing.

Sure I have the, "You're okay," or the, "Close your eyes and let the meds kick in."

Really what does that help? 

I'll tell you, it helps nothing.

The look he's giving me as he's breathing a rate of 31, when his usual rate is 16; reminds me that it's all real.  It being ALS & it's bag of BS. 

When he's stable it's like I suddenly become disillusioned that everything will be okay, and fix itself.  Then well a rough night comes, and that illusion quickly disappears and I fall apart. 

Maybe it's that, that makes me scream at God, or slam things around (it's my favorite method of pouting).  Maybe it's because I can't take away the discomfort or pain from him, or it's the pressure to think I can do that to begin with.  Maybe it's just that I'm so damn tired from everything we've already had to adjust to? 

Really maybe it's just love.  That a person I love is hurting, and I feel it all; the anxiety, anger, pain, tightness in chest, etc, and that's all too much to always be able to hold it together.

Anyways, while everyone is digesting a debate that I'm sure was full of meanness and chaos, I'll be packing away to get ready for a trip to the hospital.  Where I will have to defend myself for why his hair is so dirty, and have to speak for Steve to all those nurses trying to take care of him, and well we try to find what complication, again, is leaving us here.  

This is life with ALS, and while I sobbed on the phone to my mom of how I wasn't strong enough for this, we all know I am; and even in moments of pure exhaustion I'm still here.  

Okay, Steve will wake up again soon, and he will be ready to go, so....

The power of making a house a home.

“I’m going to make everything around me beautiful - that will be my life. ”

— Elsie de Wolfe

One of the more important lessons I took away from my Ayurveda studies, was the understanding of how you digest more than food.  You digest everything you take in, every TV show, news story, dramatic facebook post, etc.  

Included in this, is definitely the spaces you surround yourself with, and after I started my first classes a year ago, and heard this profound wisdom, I came home and checked in with my surroundings.  There was clutter, chaos, and dust bunnies hidden in every nook of our house. 

I realized quickly, most of my distractions are because of the excess.  I thought this just meant in the house, but as I began to clear spaces, and really put the energy into making them a sacred space in our home; I realized the excess was everywhere.  Excess social media time, excess "slack time", excess fires going (metaphorical ones of course).  

With each new space I would find that I would let go of the crap taking up space is my brain, with every physical crap taking up space in our house.  Crap, such a classy word, right; but I sat for 15 minutes and no other word seemed suffice here.  It was all crap, doing nothing but weighing me down. 

Okay, enough of that.  :)  I wish I could include emjois on here. 

I will probably always have a project going on here at the house, as something about it really fuels my creative projects for selling.  Here are just a few of my favorite sacred spaces in our home. I hope that the documentary team, Steve, & myself will one day do our cribs special for you, because why not?  :)  

details in the writing nook 

Inspiration window for my book, in the writing nook. 

teacups of sweetness 

Cultivating words

My favorite shelf, which happens to be an antique window 

treasures 

One of maybe 30 dried floral bouquets in the house. It's a small obsession. 

Earth treasures 

Where I sit and create my natural medicine recipes

Because there can never be enough flowers.

mala nook 

one of our bedroom walls

Creating a home to feel like a sanctuary has helped Steve and I both mentally and physically.  When illness leaves you bed bound/mostly home bound it makes our surroundings much more important.  I consider it a privilege and a blessing to be able to spend my days in this home, with Steve.  I will continue to live in gratitude and probably continue to change my surroundings 100s of times.  :) 

Weaving the pieces

A year ago, I found a folder of items I had tucked away in a back of a closet while pulling out my winter clothes.  I dropped the folder, and pages from the 1970s scattered across the guest bedroom's floor.  As I picked them up, I see the words, 'wheat weaving' boldly across a paper.

Realizing it was my grandmother's clippings of inspiration as she did wheat weaving, I decided then and there, I was finally going to learn to weave.  

I walk into our bedroom, with my eager face that Steve's so familiar with.  "Babe, I'm going to learn to weave!" I exclaim!

He starts typing on the tobii, as I flip through the pages that my grandma saved as inspiration. 

"Okay what do you need?" The tobii belts out, Steve used to my many ideas by now.  

"A loom!" I jump up with phone in hand, so we can immediately search and find one. 

I knew once I learned the ropes, I wanted to honor my grandmother in my weaving's, so to draw inspiration, In my weaving nook in the house, there's my favorite photo of her hanging, with the folder tucked away near by.

 Days I need inspiration I'll pull the folder out and read trough the clippings of inspirations she had.  It never fails that I'm inspired, and I'll find a new dried earth offerings to add to the many creations. 

I didn't always  express my gratitude towards my grandmother, as she passed away when I was 21.  Often times I have little chats with her, telling her how much she did indeed influence my life is amazing ways.  I can feel her energy in every weaving I make.  That along with the meditative state I'm in while I create these pieces makes each one special and unique.