This is a difficult email to send, but I am writing to let you know that I am participating in the 'Walk to End Lupus Now' on Saturday, October 19th on Boston Common, as many of you already know.
It is hard to find the right way to explain who I was before the onset of my disease and who I am now after the onset of that disease--I guess things have ended up, as a chapter I never saw coming. But it did. On my best days, I see the lessons and gifts. On my worst days, I'm angry and feel unreasonably isolated.
I have been lucky enough to have a husband, two kids and a bestie that show up for the laughter and tears, with the same dedication. None of us are perfect in managing this situation, but we are always trying.
My wider network is what I refer to as my own E Street--that's each of you and I'm taking tonight to express my gratitude. We are not the same people, we don't face the same challenges (though we all face our own challenges) but I know my E Street band will always show up. This makes me lucky and provides me with higher ground when I need it. When you're 33 (feels like so very long ago!) and get this diagnosis, trust me--any safe or higher ground is a big deal.
Feel free to donate to this cause or do not, I completely understand how many different, worthy causes exist, especially right now in our lives. But please know that my particular variant of lupus (Mixed Connective Tissue Disease) carries the same survival rate as many cancers that impact women, including breast cancer. Please know that there are hundreds of health issues that impact women that don't necessarily get the much needed awareness, resources and NFL ribbons of hope on Sunday afternoons.
For me, what is most important is the understanding that like many other people living with a disease, no one can be reduced to a singular aspect of their health, and each person's path is so far from linear. Perhaps more impactful than a donation is if each of you were to ask someone struggling with illness how it impacts them, if there is anything they could use a little help with and if there is anything they wish you knew about their health. I think many of you would be shocked at the difference it could make to someone.
Thank you for taking the time to read this. Sending it was one the hardest things that I have ever done. If you'd like to walk with us (and by walk, I TRULY mean a good old fashioned Irish pub crawl), there is no need to raise money or donate, though it is welcomed--either way, we can have some laughs and be glad for the good times xoxoxo