Creating the life I want
And helping you do the same
The day that changed my life
On January 18 2016, I was diagnosed with an “ultra rare” blood disease. It’s called PNH, one in 1.3 million people have it, it’s life-threatening, and for me, it’s been life changing.
Until the day I was diagnosed, I’d been lucky to never face death. It’s all around us but I’d never truly considered my own.
In a nutshell, PNH means that I create abnormal blood cells; cells that are missing the coating they need to survive and not stick together, forming blood clots (the leading cause of death in PNH).
Some of us may have a small percentage of PNH cells and never know they’re there — the ratio of PNH cells to healthy cells is low enough that we’re never at risk; maybe never even diagnosed. However, the higher the percentage of PNH cells, the higher the risk.
When I was diagnosed, 99% of my blood cells were PNH cells. In short, I was a 25-year-old ticking time bomb, and somehow, I’d been surviving on my 1% of healthy cells.
It felt like pure luck that I hadn’t formed a blood clot — which is a lights out kind of deal — especially since I’d flown across the Atlantic multiple times since moving to San Francisco, increasing my chances.
Facing our mortality
There have been a few times (and I know there’ll be more) when I was convinced I was going to die. That — in that moment — was the end. And in each of these moments, I wasn’t ready. This has taught me something.
Now when I go in for my bi-weekly treatment, I leave with a gift; this treatment that I’ll need for the rest of my life has provided a reminder of how fragile and precious life is.
The hardest part about treatment isn’t the reminder that I need this drug (fun fact: it’s the most expensive drug in the world) to remain alive but sitting with those who need their own treatment for something seemingly more life-limiting than PNH. It feels horrible to say but I feel lucky — things could be very different right now, and for a lot of people, they are.
One of the biggest lessons I’ve learned, is that time is our most precious gift. It’s the one thing we spend but never get back.
When I first Googled “PNH”, I found this: “median survival after diagnosis is 10 years”. I was 25 when I was diagnosed.
This might not be my fate, however, digesting that has certainly given me a new lens on the world. What if you only had 10 years? What would you do? Who would you be?
Helping you make change
We all have our own wake up calls. I’m sharing my story with you because it took facing death to inspire me to create the life I want, and I’d like to help you do the same (hopefully without the life-threatening part :)).
For as long as I can remember, I’ve held the personal mission to help people be their best self; their happiest, most fulfilled, self. I first wrote this mission down in 2012, when I was 22 and in my last big transition after closing the business I started at 19. I wrote this mission down again two months ago after quitting my job to reassess how I want to spend my time on this planet.
Let’s do it
Now I know I want to spend my time helping you be your happiest, best, most badass self. We really don’t have time for anything else.
So, if you’re anything but your happiest, best, most badass self and want to change that, email me.
Together, we’ll identify where you want to be, create a plan to get you there and make it happen.
…for reading this far. I’ll leave you with this from Seneca:
“It is not that we have a short time to live, but that we waste a lot of it. Life is long if you know how to use it.”