Think about how you can swallow right now. Maybe you have a sore throat, and it hurts, but you can do it. Most likely there’s no pain involved at all for you to swallow right now. Most likely it’s not a difficult thing for you to do, and reading this is making you think about how you can swallow for the first time in a very long time. I noticed for the first time in Tucson this week that my aunt can’t swallow. Saliva builds up below her lip and she can’t wipe it away. Every moment she is in painful discomfort that requires the working hands of another for any amount of relief.
I don’t like that my aunt having ALS has been the biggest thing inspiring me to maturely take perspective in life and appreciate all that is wonderful and joyful and even downright convenient about having a body that physically works. But have you ever wondered if you’d take swallowing saliva for granted? I did, I took it very much for granted. Until this past week. Now every time I swallow I can’t stop thinking about how easy it is. Actually, on the airplane back home right now, I’m noticing all of the muscles that are working to make it feel easy. How I’m blinking and craning my neck around looking for the drink cart and trying to decide if I should spend $6 on a beer that I’ll be able to pour in a cup and lift up to my lips. How some people are dozing with their necks supported by pillows similar to the type my aunt uses but how easy it is for them to re-adjust their position for comfort when needed. By themselves. Whenever they want.
ALS is a bitch. It’s a ruthless, incomprehensible, horrible disease. But here is what I noticed remains: The people that we love bring us purpose and joy. Nothing else can compete with that. Nothing else matters so much. My mom spends 2-3 weeks in Tucson with her sister and then 2-3 weeks back home in Colorado, and it’s hard for me to fathom what stress she endures...other than the fact that her love for her sister is resolute, unshakable. Has anyone ever told you during a hard time, “I’m here for you!” or something similar? My mom for her sister is “here for you” to the maximum degree. It’s beautiful and heart-wrenching, the most genuine act of love I’ve ever observed. There is nothing more important than being there for our loved ones. I say this; my mom embodies it.
When I was younger my Aunt Kay would intimidate me with her intensity. My mom brings up qualities I now share similarly. There’s a compulsive urge to exercise (and a grouchiness and irrationality that’s horrible to be around if a workout is skipped): “You better get out on your bike ride, Beth, or you’re not going to be pleasant.” There’s a voracity to get to the end of books and tasks and move on to the next as soon as humanly possible: “Beth can’t talk to anyone until she finishes that book. She’s her Aunt Kay’s niece.”
We watched a home video of a California beach vacation from 1988 while I was there this week. I watched most of it by myself last night with a glass of red wine, while my mom and Uncle Rob and Kay’s best friend and neighbor put her in bed. Uncle Larry was commentating. My mom was seven months pregnant with Erik. My grandpa had the most astounding above-the-ankle golfer tan lines I’ve ever seen. Kay and Rob were goofy and in love young parents of a two-year-old Karen and a 1-year-old Karl. There were ridiculous competitions between “Team Orange” and “Team Blue” on Silver Strand beach in Oxnard. Kay’s strong, athletic golf swing launching balls into the ocean. Aunt Lee’s plucking of all the shells off the beach in the early morning hours, beating the kids to it, and Uncle Bill’s response: store bought shells wrapped in tissue paper, delicately placed next to Lee’s starfish, claiming, “She walked right by this one,” of an immaculate white-pink-and-brown conch shell.
I was struck by a few things: 1) Everyone looked so skinny and tan. Was there sunscreen in 1988? 2) I am about exactly the same age now as my mom was then. 3) Kay, walking on the beach with Karl on her back and Karen running back and forth, squealing at the waves, had no idea what joys and sorrows the next 30 years would bring. None of them did. It would be pointless to know then; everyone was simply and joyfully living in the present. 4) Our family is full of love and laughter, and I want to have a life as rich and bursting with frivolity as they did, right there, on Silver Strand beach in 1988. I want that with Adam, my patient and ever mellow husband, and Erik, Karen and Shaun, Karl and Ashley, Kim and Adam. But I know in my heart of hearts it will never be the same. It will be our own story, guided by the people before us who taught us how to be independent, have fun, enjoy each other, and above all else - how to love.
It’s hard to imagine what my aunt is going through right now, or Rob or Karen and Karl and my mom. It feels silly that a home video had such a hugely emotional impact on me last night (maybe it was the wine?). It’s impossible to know what the next 30 years will bring for me and Adam, our families, where we’ll go together and what we’ll experience.
The flight attendant is coming round and I need to suck down the last of this Dos Equis before the inevitable Rocky Mountain turbulence commences (now that sounds oddly like a toilet emergency and I didn’t mean for it to - just meant it’s always windy flying in to DIA on summer evenings).
I don’t feel like I communicated enough to my Aunt Kay and Mom and Mimi while I was there, how much I love them and admire them. One afternoon I was resting next to Kay and she was listening to music, making selections with her eyes. She played the one by that famous artist whose name is slipping my mind right now, but the chorus,“ ...every time I tried to tell you, the words just came out wrong, so I’ll have to say I love you in a song.” I love you, Aunt Kay. It is not ALS that has taught me how to live and appreciate the best in life. It’s everything about our family that taught me. I’ve landed now, and it appears the perky flight attendant forgot to charge me for my beer... Counting my blessings begins, now.
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