Wednesday, May 4, 2016

ALS Awareness Month...sigh

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.

The sweet new shirts my friends Allison & Katie made!
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!

8 comments:

  1. <3 you! That is a good looking shirt.

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  2. Thanks for your reflections Andrea and for sharing your journey with us.

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  3. 💜💜💜💜💜💜💜💜💜💜💜💜💜💜

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  4. Well stated Andrea...enjoy each day!
    Love,
    Mary Ann and Bob

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  5. HI Andrea,
    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 aliciajclarke@yahoo.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 :)
    Take Care,
    Alicia

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  6. 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.

    -Karen

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