It is official now and witnessed - legally binding...my advance care directive - what I will and will not consent to in terms of medical intervention at the end - formally written down. Done with my doctor - with my sister and with Kirk by my side. Clear-eyed - after a time - and level. All the documents copied in triplicate and dutifully shared. Another piece of this puzzle set gingerly in place. The next steps discussed and considered - to be continued. We agree that things are shifting - moving much faster than we expected - that it will require more than my own hands to maintain things and so home nurse visits are likely soon - a step that on the one hand feels like submission - and on the other seems a welcome reprieve. Maybe for a short time until this particular phase passes - maybe not. We have moved from the prospect of five years - to a year - to possibly weeks - the fact is, nobody really knows. These discussions are surreal - so many signatures and things to be said - and yet my eyes were closing on the car ride home...these windows get shorter - as does thankfully the list of things to be done. Bravery flew out the window long ago - flinging from resignation - a forced dismissal of any emotional response to focus instead on the details of what needs to take place - to overwhelming fear - the fear of the things I can not orchestrate - this symphony of feelings that compete for my attention.
I have shared more than I ever intended - more than was necessary - and yet not everything. Our wounds are as deep as our secrets - and there are some things better left unsaid. To be honest, many days I don't know why I started this - but now that it is out there I suppose I am at least released, in part, from the experiences I related here. As I have said repeatedly, everything that has happened - happened for a reason. I made decisions that are mine alone - and the consequences are what I invited - what I allowed. Even when I picked the wrong path - I can be thankful that I had choices - that I had the means and support and physical capacity to choose a path and in some brief moments offer a piece of myself to this big, wide world and the people who have mattered to me along the way. Writing this blog has been my release - a place for my mind to go when my thoughts just couldn't stay locked inside any longer. Because even now I struggle to explain myself - feel like I have to make the scorecard even with people that have no regard for me and maybe never did - have to try to win them over when the prospects of that are futile. Frantic to make it okay.
Still, I have been the beneficiary of more love and support than I ever deserved - the kindness of strangers and the forgiveness and understanding of those that knew me better - who saw what was a deeply flawed shell and loved me anyway. How can one ever truly capture one's gratitude for that? For the people who gave me opportunities - who taught and nurtured and mentored me - who reached out to me along the way and in particular, in the past number of months - the family I have - the family I inherited and the larger family of people who have given so much of themselves to make this easier...to extend their love in big and small ways.
And I will say again - if I let you down on any occasion - hurt you - or disappointed you - please know from my heart I am so very sorry. No life is worth living if you can not say that out loud and truly mean it.
I may or may not revisit this medium - I haven't quite decided if anything more needs to be said. In the meantime, I thank you for listening to the sound of this one voice - my voice - sending you love and peace and comfort in those hours when you may feel no one is hearing your story. I will be listening and you are not alone.