It’s May, ALS Awareness Month, and high time I re-launch my blog. I’ve just been having so much fun living (oh, and moving) that I’ve gotten out of the habit of writing on a regular basis.
Except I don’t want to write about ALS awareness. It’s exhausting and scary. A couple of people told me recently that ALS ruined their marriages, several more told me they would never stop grieving for their loved ones lost to this disease. I hate wading through words like apoptosis, necrosis, and macroautophagy (all of which mean “cell death”). I’m sick of the industry ALS supports, the politics of it all. Honestly, I’m even a little tired of ALS awareness posts.
From my little corner of the world, people seem pretty damn aware already — either from their own experiences, or mine.
Besides, when I think about my journey so far, what comes flooding to my mind are the people who I have met because of it. The deep friendships I never would have made (or re-made), the beautiful, unbelievably strong souls I never would have read about. The experiences I wouldn’t have had. We certainly wouldn’t have moved back to NC for me to spend more time with my parents or my friends here.
But I’m still a newbie in this space. I don’t know what it’s like (yet) to not be able to get up and move around when you want to, be fed through a hole in your stomach, be reliant on someone else for every single want or need. To know your own death is not somewhere nebulous in the future, but imminent.
I sure would rather spend my time and energy building sustainable cities, raising $ for bikes for kids with special needs, raising children with DP. But for whatever reason, God/the universe/fate/random chance ordained this to be my path and so I will fight alongside all of my fellow ALS warriors to bring attention and research dollars to this miserable, dignity-stealing disease until there is an effective treatment or cure. Something else because right now there’s just a whole lot of nothing. Just a bunch of elaborate, expensive technology to keep you as comfortable as possible until you die.
There are a lot of important dates within May — my friend Lisa’s birthday, the anniversary of her death, Ramblin’ Rose Raleigh triathlon which a bunch of Team Drea members (and I!) are doing, the 9th anniversary of Jon Blais’s death, the two-year mark of my initial diagnosis. So check back often (at least weekly) and I promise not to be so quiet 🙂
And please, please donate to ALS research — Team Drea has raised $108,794 for ALS.net and the Blazeman Foundation!
<3 you! That is a good looking shirt.
You are inspiring my friend.
You are inspiring my friend.
Thanks for your reflections Andrea and for sharing your journey with us.
Well stated Andrea…enjoy each day!
Mary Ann and Bob
Where do I begin? I am moved to tears reading this blog and "inspired" just seems such a hollow word to describe how I feel. I clicked over to your blog from a Fb post on SwimBikeMom after reading your story on the Ramblin'Rose site.
My name is Alicia, and I am a writer with a doctorate in psychology, the mother of four girls (one with multiple disabilities), a new triathlete, member of the Mullica Hill Women's Tri Club (largest all female tri club in the nation) AND author of a soon-to-be-published non-fiction book about women in triathlon. My book project was signed with VeloPress this past winter, and will hit the shelves in Spring of 2017. In this book, I talk about "all things triathlon" and also share stories of inspiring women doing extraordinary things through triathlon.
I am almost finished my manuscript (due June 15th) but when I came across your story, I HAD to ask you if you would be interested in being profiled? I would share your story and include all the fundraising you are doing through Team Drea, which will hopefully bring some attention to this amazing cause! If interested, I would love to hear from you! 🙂 My email is email@example.com… and I'm on Fb too (Alicia Clarke DiFabio).
Either way, I am a huge fan and wish you ALL the best through your journey 🙂
Andrea, you're a beautiful writer. Thank you for sharing your thoughts. I was Googling to see if I could find your personal e-mail address and came across your blog instead. I guess your new digs mean that a meet-up will be more difficult, but I hope you are doing well, and I think of you every time I receive a NCAC-APA e-mail.