Never have I been more starved for wisdom, than I am right now! Wisdom only comes with experience, it's not something you can google, ask Alexa for or find in a book, It is something you have experienced, navigated and figured out along the way. For me it's like putting the human experience into the data and helping me figure out “WHAT DOES THAT LOOK LIKE? HOW WILL I KNOW? WHAT IS THIS FEELING I CAN’T EXPLAIN? WILL IT BE OK? AM I DOING ENOUGH?
When you're in the middle of a chronic disease that's altered life in ways you couldn't have imagined, you're looking for someone who can explain, normalize and give you the perspective you need on the feelings you can’t name and the situations you can’t control. Our healthcare teams play a pivotal roll in helping us to understand “why” things are happening now, what will happen next and most importantly we look for them to set our sense of urgency, our sense of what is normal now, and an understanding of what lies ahead.
All of this information helps us to develop a story about how we are going to live with the disease by understanding what it is going to demand from us physically, mentally and emotionally. One of the hardest things I'm experiencing throughout this journey is watching Jeff suffer. No one teaches us how to watch it or how to support ourselves through it. Suffering comes in many forms but the reaction to it seems to be consistent. Feeling helpless, powerless and frustrated that you can’t “Fix” it... I find myself wishing for a pill that could take it all away because information tells me there are things to help with this... Wisdom has taught me that no matter how many pills we may have, the power and magic for both of us is how we love each other through it. The “fix” is presence, love, compassion and grace. Wisdom is understanding that it's not what we do “too” the person we are supporting, but how we make both of us “feel” through it.
I believe the best present we can give someone is our gift of experience. Sharing our experiences and the wisdom we have gained along the way is the best gift we can give ourselves...