I took this photo the day after we launched Being Positioned – the nonprofit.
Exactly one day after the greatest accomplishment of my life became a reality.
We had planned on celebrating, but through a series of unfortunate events, including an incorrect test result, I ended up having to spend it in yet another infusion chair.
Launching a business at the same time as dealing with my condition has been unexpectedly difficult for me.
Thankfully the side effects from my treatment are minimal, but the fatigue it causes has made it hard for me to keep up. Repeatedly working until 10 pm isn’t great for someone in my position, and my late nights quickly took a toll on my body.
The more tired I am, the worse my hearing gets. That’s what caused the false decline on my hearing test – and that’s why I ended up having treatment the day after we launched.
On it’s own, an extra infusion isn’t a big deal. But, the emotional roller coaster of getting bad news and having to redo my appointments all while trying to launch Being Positioned was extremely defeating.
I did what I could to show up every day, but honestly, it was some of the hardest weeks of my life. I was so proud of everything we were accomplishing but incredibly frustrated that I couldn’t just be normal for a bit and get through everything without the drain of being a patient.
It’s hard to ignore that heavy feeling of disappointment each time NF2 taints another life event.
My condition has stolen a lot from us in the last four years. But at the same time – it’s added just as much. After all, if it weren’t for this disorder, I never would have created Being Positioned.
I feel like I’m stuck in a strange reality. One minute I’m on the phone with our trademark lawyer, the next I’m calling the cancer center. Bouncing back and forth between running a business and being a patient – like I’m living two completely separate lives.
But Being Positioned has been a beautiful distraction for me.
It’s given me something to hope for during an otherwise hopeless situation. And having my health temporarily decline while launching reminded us why we’re doing this and how much people living with these conditions need a break.
I know how it feels to be desperate for an escape.
When starting a business or taking any big risk, it’s easy to feel like you’re making a terrible mistake. I couldn’t help, but think I was crazy for doing this and doubt whether people would care about what we’re trying to do.
The weeks leading up to our launch, I started feeling more insecure about the process and worried that people wouldn’t think this is a worthy cause.
So, maybe I needed the reminder.
Maybe the reason I had to go through all of those extra tests and appointments at such an important time was that I needed to remember that I’m not doing this for other people’s opinions.
I’m doing this to help adults suffering the same reality that I am.
I’m doing this for everyone fighting to live a normal life despite the battle going on inside their bodies. I’m doing this for everyone feeling like there is no chance of escaping their reality, even if just for a week. I’m doing this for everyone living the same double life and needing something to hope for again.
And despite my fears about sharing Being Positioned with the world – you did an incredible job of proving me wrong.
Thank you to everyone who wrote such meaningful messages about Cardin and me when you shared our video. We read every single post, and your words of love and encouragement were so healing for us both. And thank you to everyone who donated this last month. Your support and trust mean the world to us.
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