Delightful Interlude

Life is interesting just when I feel like I have direction it changes course and suddenly I am replanning, improvising and headed on an unexpected course. Life laughs at my desire to exert control over my life, plan it and execute it. I find it frustrating even infuriating at times. But yet my life has provided me with wonderful experiences that I would not change if I had the choice. I wouldn’t change even One. Single. Thing.

After these last few years of life beating me into submission I am trying to let go and take things as they come. It is getting easier and I am becoming better at it. I am even finding joy in what life brings. I have stopped filling my head with endless schedules and obligations, they can reside in my Google calendar and on my Sticky note app.

Luckily, a lot of this development has coincided with me getting stronger and stronger and feeling better and better. And with that embracing my journey and all of the scars from what I have been through.

Years ago at ASU I ran across a book working in the architectural library on Wabi Sabi. I checked out the book and took it home and read the whole thing in one evening, it was short. The concept of holding a worldview where imperfections are beautiful and the incomplete and impermanent can be desirable seemed serene. I loved the idea. And like many things I read I tucked it away in my bank of knowledge of things that exists in the world. Things I should learn more about when life provides the break, the time to do so.

Lately that philosophy has been resonating again. Why am I constantly on a quest to be perfect? To fix everything little thing? And in the process miss out on a lot of the joy of the present…… Why does our society hold perfection in the highest value? From selfies on Instagram to our fancy cars and big houses. We showcase our perfect relationships and only our achievements, rarely our failures. But if we look honestly it is our “failures” that shape us, give us strength and mold our character.

There have been times in my life that I shopped for and dreamed of having some wabi sabi pottery from Japan; where they fix cracks and imperfections by filling them with gold. They are absolutely stunning! Now my primary goal is not to obtain these material things, but to fill my imperfections with 24 karat gold.

Life has been telling me to embrace the unknown and accept love and see beauty in my imperfections. See the world through Wabi Sabi and live life loving my tubes, my bags, my lines and my scars even though at times they cause me pain. 24 karat gold. The cracks are not fault lines, weaknesses. They are beautiful and strong. My life is filled with 24 karat gold. My abdomen must be a gold bar! 🙂

The more I began to accept my current state of being the more I realized carrying my sh*t around in a bag is not that bad. Decorating my tubes can be part of my fashion choices for the day. And honestly most people are so busy and distracted they don’t even notice. Having to connect to a hydration IV bag a few times a day can be just like stopping to enjoy a meal or cup of coffee. Providing breaks during the day that are so good for our mental health. Being on tpn for 12 hours a day is just my reminder not to over do it, take time for sleep and self care. It is what at the end of the day will prolong the good parts of life. 24 karat gold, everyday.

One by one I began to accept who I am and what I have to do to enjoy my life to the fullest. This life I have is not a failure it is an amazing success because there are so many reasons that my life could be over at this point. And it is my responsibility to live it that way for all of the people that have gotten me this far.

This conviction began to grow inside of me, that my life right now is working. I am happy and healthy. My team here carried me back from the edge of the abyss and gave me the ability to hike, bike, wade in the ocean, hug, smile and a million other things too! It was time to embark on a multi-week conversation with my family, friends and my medical team. Was my health and life good enough that I could live like this for a while?

There are risks of living like this… I am well aware. But there are risks crossing the street and driving a car and we all still do those without a second thought. But in my mind those risks can be minimized and monitored, and my medical team agreed!

There are risks with transplant too… and when I arrived in Cleveland my health and quality of life were so poor that we all thought that it was the correct solution at the time. And it was. But embarking on an intestinal transplant is not to be taken lightly. It often does increase one’s quality of life however, it is not the ‘fix’ we associate with a kidney transplant or even a liver. While all transplants are hard journeys with mixed outcomes, intestinal is complicated and unique. It isn’t a failure to not need an intestinal transplant.

Many things in my life have changed in the last 14 months, my perspective of perfection, my health, my energy, my quality of life have all drastically changed for the better. So my medical team, my family and I have decided to embrace this joyful interlude and postpone transplant, for now atleast.

I know a lot of people’s first response is hesitation… concern for my longevity. And I thank all of you for that. It shows a deep sense of caring and love. Thank you!! But really this is a great thing!! I feel better than I have in over a decade. Chris and I took our first vacation where we truly got to escape the world relax and have fun like never before. It was the first trip we have ever taken that I didn’t spend a significant amount of it nauseous and vomiting. The first trip that my health didn’t ruin plans or days of our vacation. I get to wake up everyday and feel good.

My hair is growing back, my skin is healing, my finger and toe nails are growing again. All signs that much like the flowers outside this is my season to bloom and face the sun.

It is with mixed emotions that I pack up our place here in Cleveland and head home to Chicago. Where I will be closely monitored by my Cleveland team and will return for appointments and care. We will take it day by day and week by week, who knows I could be one of the lucky ones that can enjoy this stage of life for a long, long time. One can only hope.

I am looking forward to filling my life in Chicago with 24 karat gold. To share with the world what it means to live like this, joyfully. To support those that are facing similar challenges, with positivity. To take the time to smell the flowers and feel the sun on my face, literally. To incorporate that philosophy I read about so long ago, Wabi Sabi, into my life.

This journey is not over, it has only just begun.

Onward and Upward!

Let’s Dance!!

And the blood will dry
Underneath my nails
And the wind will rise up
To fill my sails
So you can doubt
And you can hate
But I know
No matter what it takes
I’m coming home
I’m coming home
Tell the world I’m coming home
Let the rain wash away all the pain of yesterday
I know my kingdom awaits and they’ve forgiven my mistakes
I’m coming home, I’m coming home
Tell the world that I’m coming
I’m coming home
I’m coming home
Still far away
From where I belong
And it’s always darkest before the dawn
See you can doubt
And you can hate
But I know
No matter what it takes
I’m coming home
I’m coming home
Tell the world I’m coming home
Let the rain wash away all the pain of yesterday
I know my kingdom awaits and they’ve forgiven my mistakes
I’m coming home, I’m coming home
Tell the world that I’m coming
I’m coming home
I’m coming home
I’m coming home
Songwriters: Shawn Carter / Alexander Grant / Holly Brook / Jermaine Cole
Coming Home lyrics © Carter Boys Music

5 thoughts on “Delightful Interlude”

  1. I am a friend of your mom and she has shared your ‘Gut’ journey with me for awhile now. I admire your strength and positive attitude. I continue to pray for you and your family. God bless you!!

    Like

  2. Welcome home, Bethany. Another friend, at her 75th birthday, spoke of the cracked pottery filled with gold dusted lacquer to showcase the beauty of its age, and how she now takes delight in being called a “crackpot.” 😃 Wishing you continued sun filled days ahead. See you at the pool 😎

    Like

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