Posts tagged with #grief

After 24 days of holding out hope that some troubling symptoms were curable, followed by 22 days of watching the realities of an awful incurable brain disease take shape, my mom died Tuesday evening. My dad, my brother, and I were close by when she passed on December 20th, 2016.

The 46 days leading up to this event have been heart-wrenching. Watching someone you love suffer and wither away before your eyes is an experience I hope none of you have to face. And if you’ve done that already: my deepest condolences from a place of unfortunate understanding.

Christmas 2012

I’ve been fearing the death of my parents since I was ten or so. I was probably more tuned into it than most thanks to my Mom’s sense of morbid reality — like when she reminded us during the Christmas of 1988 that we should talk with our grandmother in Australia because she “doesn’t have much time left.” And then reminding us again in 1989, 1990, 1991, and the next fourteen Christmases until she died in 2006. You’d think that after a lifetime of thinking about death, I’d be more ready for it. But who is ever ready for this?

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My mom has been battling a mystery brain ailment since the beginning of November, and earlier this week we all just found out that she’s one in a million and has a very rare and fatal brain disease called Creutzfield-Jakob disease (CJD). It’s in the family of Prion diseases and is alarmingly progressive, horrific, and incurable. In 26 days it’s gone from her not being able to recall individual words to barely being able to communicate and needing help to be fed. To quote my mom: “It’s a bugger. It’s a real bugger.”

I’m thankful for my family being in Austin, and how any gripes we’ve had with each other have been swiftly put into clear perspective: irrelevant. I’m also thankful that despite the upcoming brutal days, weeks, or months of decline we’re having the chance to get some closure, receive some last minute words of wisdom for the future, and to say goodbye—things a sudden event would rob us of. That all being said, this experience is in a new category of difficult and terrifying for all parties involved.

When I’ve been on your end of this grief/consolation equation, I’ve often been at a loss for words and haven’t known what to say. I don’t expect you to know what to say. What can you say? What can you do? Consider this me letting you off the hook, and accepting that nobody is good at this and everyone gets a little weird. I feel a little more than weird about it, and you’re allowed to as well. I don’t really need any help with the matter at hand, and lying on the floor and crying into the rug is an activity best done solo.

The only reason I’m even making this public announcement and telling you all this is a) in case you know me well enough to have met my Mom, b) if I seem a little off in the next couple of months you’ll have some context, and c) in case you’ve been hiding a secret cure for prion diseases.

Thanks for the support, I appreciate you, and I hope all your loved ones live forever.