Time is Precious
You know how it feels when you go to an event and you walk in and everyone is so happy to see you and you are treated like a celebrity, you amaze all the guests with your stories, witty repartee and your unquestionable beauty?... Yep, me either.
Have you ever been in a room with countless doctors, nurses, PA’s and med students? Or had multiple doctors say things like: “You may in fact be a new mutation of another disease”, “You may in fact be the only person in the world who has been given this drug and have it show some improvement in treating Cold Urticaria”, or my favorite... “You are so interesting, would you mind if I bring in my med students to watch?”, or finally, “The way your body handles this is so unusual, I think we may want to follow you for a while in our research lab”.
Now that last comment was said to me on three occasions, by three unrelated doctors for three separate disciplines.... So goes the beginning of the two day summit at the amazing world class facility at NIH. PS. Thanks for paying your taxes... I’m very grateful!
When you consider that this Pilgrimage has been going on for a long time, you realize that there are things about yourself....Well that, you are still learning. Some that you are excited to learn, and others that rip your heart out of your body with the whole world to witness.
When you have been poked and prodded by the world’s best, you sometimes realize that you can be de-sensitized by the medical world. For instance, more folks have seen my naked 190 lb body, than ever even looked twice at my 130 lb body... Oh how I long for that body again. I have lost count of the times a stethoscope has been used to listen to my lungs... Lord, if I had a dollar for every time that trick was done! I don’t care if you see my AA’s for the echo, or touch ‘em when you listen to my heart, lungs or whatever. My current body is not the body of old, the one I never realized was so beautiful, the one I took for granted...
What I do find that amazes me, is how different it is done... I can tell the folks who are checking a box and the ones who are really listening to hear the murmur, or hear the crackle of my lungs with pleurisy.
I also, have long realized that my health was very serious, and that some version of this disease may be what eventually takes my life. I have worried that we may not find the problem in time to slow down my disease pattern.... That has given me and those who love me some seriously sleepless nights. And I have worried about what I need my children to learn, while I’m here.
What are the core things about myself that are critical for me to give them? What lessons, beliefs, what stories do I need them to know? The ones I want them too have heard so many times that they will never ever forget. What places and people will always feel like home because they were my safe places, when this world was hard.
Who are these people that I love, and why do I love them so?
These are the ideas, the values, the stories that are our legacy, and what we are leaving behind... It’s not the houses, or camps, trips, it’s not the sports or music lessons...
It is us, it’s the exquisite everyday moments we make, when we put down the phone or other electronic device and look into the eyes of our children. We make such a fuss about how our kids need to stop and look at us. But, do we offer them the same courtesy? Do we stop chopping, reading, folding, ordering, and directing to give our loved ones the same. I know, I’m guilty of it.
My beloved Ian said to me this week, ”Mom stop saying uh, or mmm and please look at me and answer me.” Well hello hammer moment...
verb, from the english
, A life lesson that hits you square in the face, with a metaphorical hammer. That imparts wisdom, knowledge or provides an education tool. The source of said learning is never expected.
: My children once again provided me with a hammer moment about parenting.
Writing this little blog is tricky sometimes, because to be authentic, it requires me to talk about the people who matter most to me. My Clive Owen look alike Jeffrey, or my Mom, the beauties, core girls, or my doctors. So I try my very best to respect their privacy while I share my own truth. It is a balancing act, my closest, nearest and dearest struggle to read what I write. Perhaps, it’s because they are ring-side on the real deal. They see what pain and illness really look like. My Mom sat next to me on the green couch as I cried this week from pain, frustration, worry and guilt about the state of affairs. This pilgrimage is no joke, its real life, and it’s happening in real time for all of us.
I think that explains my urgency, my demands of you the readers, to pay attention to the moments... Don’t waste time.
I feel like one of those crazy people holding a sign... “It’s the end of the word”.
No it’s not, but heaven knows, life is much too short... It’s not about the silly Kardashian's, or whatever Housewives you watch. It’s all here, it’s real and it’s slipping through our fingers faster than we realize...
So even if you are sick like me, try to make it work, find your gifts and share them.
Be present in the lives of those who matter to you.... Be in it.
To put it in perspective, all you need to do is walk through a major medical hospital... It is the culmination of the journey for many of us... It’s our last hope for wellness.
As I walked through the doors at NIH this week, a beautiful 8 year old boy who could have been my Ian, walked in front of me leading the way with a black backpack on his slim frame and his fresh crew-cut... What you could have missed, if you weren't paying attention was that backpack held a long clear tube providing a drug to his body... Likely a drug working to kill cells and mobilize others.
He was leading me toward wellness, running ahead through the lobby...
And I was running, to catch up with his optimism, love and faith...
The divine in me, bows to the divine in you...
Please know that I pray for all of you, as I hope you will pray for me... It is a powerful promise that I don’t take lightly...