Posts tagged with #cjd

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.