12.8.17 Stupid Poof

Remember when I told you that I was losing my shoulders? Well, here’s what I’m talkin’ ’bout, Willis:



Obviously my bra agrees as it couldn’t dare be bothered to remain in hiding – don’t judge! It’s hard to see those pics side by side, I feel like I’m crumbling in the pic from this year. Man how things have changed in 3 years.

So shoulders, not a huge deal I just don’t go sleeveless regularly. The problem is that in losing my shoulders, I have lost my ability to do anything once my arms are up, which is why my hands shake when I’m holding a glass or why I lose my breath putting a cup into the cabinet. Again, not a huge deal I use a straw and Kenneth is the cup putter upper. The most frustrating part of this is that I’ve just about lost the ability to pin my signature hairstyle: the Stupid Poof.

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Y’all, this is a huge deal in my little world. I perfected the Stupid Poof, lovingly named it and shared it with my girlfriends, and trusted it’s ability to transform any outfit into greatness. Bobby pins are hard – even for those without manual dexterity issues – so that creates a problem. The fact that I can’t do anything once my arms are in the air creates another. I have found that scapula support gained from laying on the bed helps, but then the need for a mirror becomes the issue. And no, we’re not putting a mirror above the bed, that’s just creepy.

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Wanna know something funny? I got my stupid poof from my Grandpa Rusty. We had the same kind of hair: fine, full, and flexible. We even used the same hair products. I miss him, a lot.


ALS sucks for many reasons, and those reasons vary from person to person and day to day. For this big hair lovin’ Texas girl, ALS sucks because it took my stupid poof. Yes, you’ve seen some of my “I got lucky and we’re leaving it” poofs but the truth is Kenneth is getting the hang of bobby pins. He’ll kill me if he knows I told you that, so let’s just keep that little bit to ourselves – deal?

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Don’t take for granted the little things, for one day you’ll look back with your flat hair and realize that something like the stupid poof was a big part of your persona. Share your gift with others so that they too can bask in the wonderfulness and help you pin when your arms and hands are no longer working. It sounds silly, missing a hair style, but it’s a major step down the road of dependence that I’m not looking forward to.

Just for fun, and to end on a happier note, here are a few of my favorite stupid poofs:


There are lots of fun memories in these pics. As I remind my yankee future sister-in-law: Bigger the hair, closer to God.

2 thoughts on “12.8.17 Stupid Poof

  1. Hello My name is Jeremy and I live her in Lubbock with my Uncle Robert Barnhill who has ALS. He’s been diagnosed going on almost 9 years now but I have mainly been a caretaker for the past 3 years and in that time have seen many difficult changes. I follow your blog and love hearing your stories and I absolutely understand now the changes that you are facing even though at the time I did not understand them so much with my Uncle. My thoughts and prayers are with you and I appreciate everything that you are doing by living strong through this. Continue doing what you are doing and in my Uncles words “Sing your song!” and you will touch many lives! I look forward to more updates and just wanted to share my thoughts.

    Liked by 1 person

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