Friday, March 31, 2017

I stayed

I woke up in the morning and all of me hurt.  I could barely move and I struggled to get myself out of bed before giving up and crawling back into bed.  Overcome with grief and physical pain I just didn't want to move however I couldn't bear to stay there.  However I stayed.

I was left alone with my aching body and my stirred up emotions, my shoulds, my plans for the day and I just wept until I fell back asleep for a few hours.  Eventually I got up and made myself my tea and a little bit of breakfast.  I needed to move, and yet I couldn't think.  So I gathered my yoga mat and walked to a class (thankful that I can walk).  I was looking forward to an hour of nothing to think about except where to put my hand and my foot.  Where someone else would help guide me in unwinding my body.  

I placed my mat on the floor, took a sip of water and did my best to feel my breath as I waited for the class to start.  She had us start on our backs, to do a bit of facial massage and relaxation.  I could feel my breath jump up into my throat and my pace quicken as I looked up at the ceiling.  I willed my eyes shut and brought my hands to my face to follow the directions.  I pressed the first spot and tears just came flooding out and at the same time the feeling of panic, a feeling that I had to get out of that room as fast as possible.  

I stayed.  It was the longest yoga class I have ever taken.  I just kept telling myself, "stay on your mat." My breath was erratic and I was an uncoordinated mess.  When class was over again I had to force myself not to run out, to just gather everything up and walk out.  

I walked home, taking a brief detour to go by the bayou, and there I found that same grief.  The broken heart that was wanting to be taking care of.  There has been a lot of grief this year, saying good bye to places, friends, coworkers and family members.  Sometimes there has been something grand to look forward to because of those good byes and sometimes there has just been this ache, this space left by someone I love and treasured.  It piles up, and I needed some time to recharge.  

I just found myself floundering around about how to actually recharge, how to express these various griefs that built up.  I found myself in that familiar place of not being able to go back and not quite which way was forward.  It is a space I write about frequently, this space of what do I want?  Where do I put my focus?  

What happens when the answers to those questions are simple, focus on work, laundry, taking a shower and meal preparation?  That was when all of my shoulds kicked in.  The story that I needed to have better goals and focus, that simply getting through the day was not enough.  However listening to my body and my emotions that is exactly what I needed, to just focus on the next breath and allow the creativity to bloom, allow those more "important" things to come into focus instead of forcing them.  Sometimes it is okay to stay on the mat and just gather yourself together before taking that next step.

The mat is safe, it is a place to recharge, to grieve and to work out emotions.  It is a space that is okay to be and get back in touch.  It is a place where it is expected that you will wobble, learn new things and fall down.  Right now life is just my mat and it is okay if I wobble and fall down, it is okay that I don't know what to do every moment of every day.  It is the space between the notes that makes the music.

Question of the day:  What are your favorite ways to recharge and take a break?  Let us all grow that creativity together.    

Sunday, March 26, 2017

Sunshine Sunday

About five years ago I drove to meet my Godson.  I remember that drive vividly, telling myself that I could do it, that I wanted to do it, that my grief and broken heart could wait a few days.  It was clearly a life changing event. Andrew is a reminder that there is so much joy and brightness in the world even when it feels dark.  That trip and the conversations I had with my best friend during that time inspired this blog.  

This weekend I set out on another trip to celebrate his birthday, wondering if I could make it.  I had not driven that far and long in a car since my diagnosis.  In fact I was scared to do it, I was scared that my bladder would not be able to handle the journey.  In the end I made it there and back again.  There were some really difficult moments during the drive but in the end it was worth it.  

Happy Birthday, Andrew!  I can't wait to see what else your birth inspires in this world.  I already see how much it inspires your sister to be gentle and aware.  

Thursday, March 23, 2017

Starting over..

We moved a month ago, and things got pretty chaotic and unsettled during that time.  I wasn't working out regularly, made some mistakes with food and was running back and forth between two different living spaces.  Adam and I hustled to get out home ready to be put on the market and at the same time did our best to settle into a new space.  Although I still maintained some regular practices and a work schedule, I was constantly feeling like the floor was going to drop out from me.  

I am still in a bit of that in between time, leaving one thing behind and walking towards something new.  That little bit of tug of war, this is where I want to go, but back there is where my needs were met.  We lived in the same house for over 10 years, and it is easy to forget how long it took for that place to feel like "home."   Was it the point when we started hanging up photos?  Was it when we bought a couch and some furniture?  Was it the first time we heard Sterling running around at night trying to find us?   I wanted some sort of metric to decide "it is going to be okay."

Even though I was ready to move out of that house and into a move space there has still be a lot of grief, a lot of giving things away and saying good bye that I didn't expect.  Added to that feeling is the uncertainty of a new space, the intimidation of decorating, of changing things around and transforming into something new.  It is a gap, it is an uncomfortable place where I just need to keep going, keep adjusting the compass to what I want.  

This week I have really made it a point to find time in my day to do a regular physical practice, to go to a new class or sit down and relax in the new apartment.  Just sit, don't worry about blank space, or that it is still a mess, or that I still can't remember where my socks are.  This morning I went for a walk, I am a bit ashamed to say it has been a while since I went for a good long walk out in nature.  After about a mile, my muscles were protesting, and my breathing was labored.  So I turned around and headed home.  

Knocking me out of my stories was this beautiful peacock.  It had to jump out in front of me to get my attention.  I watched it twirl in the driveway for a few moments and found one of those moments.  That moment when it feels like you arrived somewhere, that something let go, that the miles to go don't matter.  Maybe this will be one of those moments when this new space starts to feel like home, or maybe this is just a gift of being present and realizing the floor is not going to drop out from under me. 

Question of the day:  What can you find in your day that tells you the ground is stable and supportive?

Sunday, March 19, 2017

Sunshine Sunday

I feel like this week should be remembered, it was one of those weeks were everything was going to fall into place and we would be able to stop putting so much salt in the wounds of the past.  However it didn't work out that way, it was a rough week full of bumps, bruises and a lot of hard work.  

At the end of it all Adam and I are celebrating the fact that the house is completely cleaned out, we have a couch in the apartment, we started hanging up some art and photos and we got to have a long overdue date.   Honestly, it has been a rough week and I want a week to sleep.  When it is difficult to enjoy the ups and downs of this rollercoaster life, I am extra thankful for moments like these.  

Wishing everyone some time to treasure those moments of peace and harmony this next week.

Thursday, March 9, 2017


There is a parable that appears in the Gospel of Matthew that has frankly always irked me.  I am going to summarize it really quickly, and forgive me I am far from a biblical scholar.  The parable of the generous employer.  The employer hires farm workers to help with the harvest at different times of the day.  At the end of the day all the workers line up and every man receives the same wage.   Every man no matter how long he labored, receives enough to feed and take care of himself and family.  

Because I am not a biblical scholar, I will leave the interpretations of grace, generosity and redemption to them.  However I was thinking about this parable a lot yesterday while I was lying in bed.  I had hit a point of exhaustion and needed to rest.  There is a lot going on right now and I left Adam to handle a lot of things, and I felt worthless, useless and selfish for taking time to be in bed. 

I started thinking about this parable differently, what if all the workers are just different aspects, different expressions of myself.  Sometimes I show up bright and early and work the whole day and some days I am glad to sleep in and work a few hours.  But I value that person that works the whole day so much more then that person that needs to or even chooses to spend time resting, relaxing or resting.  At the same time both are expressions of me, both are me and if I truly want to live my life like I am valued and love able, I need to accept and embrace all of those expressions of me.  

What does that look like?  How do I change that internal dialogue that constantly comes back and tells me my illness makes me inferior to who I was before?  How do I stop that comparison?  I have no idea.  Attempting to change that internal dialogue, that constant chatter is something that evolves slowly for me.  That being said I have learned the best way to change that internal dialogue is to make different choices, even if it is for a moment.  It adds up and slowly those little gremlins dissolve into the light.  

At that moment when Adam asked what he could do, instead of going into a rant about how I felt worthless and apologizing.  I simply said "please, take care of the house in such a way that I don't need to worry about getting it ready for painting."  Magically, Adam got up and headed to the house to take care of moving furniture, removing screws, remaining pictures and all the other little things.  Magically things got done and handled and no one fell apart.  Yes I still got to spend the day with that internal dialogue but I knew that making that simple choice would start to shift it.  

That one simple choice gave a voice to my worth, and acceptance to the fact that I am not simpy worth it on the days I labor all day.   My worth doesn't change and it is time I started to be my own generous employer.  

Question of the day: How can you honor an aspect of yourself that you don't typically value, even if just for a moment?  

Sunday, March 5, 2017

Sunshine Sunday

During this recent move, Adam and I have been letting go of a lot of things.  Moving to a smaller place, means that we had to prioritize what we are using, what we need and what can be passed on to someone or some place else.  I make it sound so simple, so cut and dry.  It has been a ton of work and a ton of emotions.  

So when I stumbled on a few of my old baby blankets today I spent quite a bit of time in tears.  Every so often Adam and I find things we had put away for when we have children.  Through this process we have been gifting some of those things away, realizing that torn up book probably isn't worth keeping and various other choices.  When I found these old blankets, Adam told me it was fine to keep them if I wasn't ready to let go of them.  

I sat with that for a long time.  I imagined the future finding these blankets again and feeling old wounds ripped open, instead of being able to fondly look on these blankets.  So I told Adam about my blankets, and decided to gift them somewhere.  Maybe it is not about letting something go, maybe it is about acknowledging that these things are meant to be used, and allowing them to be passed on to someone.   

Maybe instead of letting some of these items go, we are passing them on to continue to be used and treasured.  

Question of the day:  Is there some salt in an old wound, that keeps irritating you?  Can you reform that story and look at that person, place or thing differently?  Can you see the true nature of it?  

Thursday, March 2, 2017

I am not alone

A week before I left, I searched for every reason to cancel my trip to the Spoonie Collective retreat.  I was in the middle of a flare, we were moving in about two weeks, I had important interviews the week I would come back, the worry was if I came back depleted there was so much to get done that everything would fall apart.  Adam finally looked at me and said "you need to do this, you want to do this, stop looking for reasons it won't work."

With all of those reasons and more I embarked on a trip to Vermont, to a Chronic Illness, Wellness Retreat, hoping to find some new connections and resources.  Wanting to be a part of the Spoonie Collective and spend time learning and sharing with other people about living with complex chronic illness.  

The honesty and vulnerability that people displayed was amazing.  Being able to be honest, to be able to say things out loud that I have never said to anyone before was freeing.  I am still in this crazy process of grieving an old identity, grasping on to it and forming a new identity.  For me it has been a pretty isolating experience, I am so fortunate to have a health care team that believes me and some extremely patient people in my life.  There is nothing like getting to talk to people and say "me too."  There is nothing like hearing someone's story and saying "I thought I was the only one."  

That was the strength of this retreat, bringing together people from different places, and different parts in this process.   Hearing people share their miraculous recovery, people sharing this worked for me but I get that it may not work for you.   One of the chefs even made me a small shepard's pie without carrots, I had tears in my eyes. 

I learned how healing it can be to hear and share stories, even if they don't end with "I got better."  Each one of the people I met is still living their life, it just looks so different and they still want more.  That is the gift of this illness for me, to remind me to keep improving, to keep growing and that everything changes.  

Here is a link for the stories that people told at a live storytelling event.  I hope one of them shows you that you are not alone and there is always someone who will listen.  

Question of the day: What do you need to share today?  What is something that you haven't said out loud that has been festering around?  Maybe just say it outloud looking in the mirror, in the shower, give it a voice.