BEFORE ALS
Everyone with ALS was once someone without it.
That being said, I decided to kick off my Ten Days of ALS talking a bit about Brian and our life before ALS.
Many of you know the Brian that is now. I want you to know the Brian that practically ran up hiking trails. The Brian that sat in his studio, twisting tiny little knobs on his console for hours upon hours, working to ensure that any band got the best production he was able to give them.
We started dating in 1994 while attending the University of Alabama in Tuscaloosa. Two weeks into it, we kissed, knew that was it, and have been inseparable ever since.
We used to go on cross country road trips. We’ve camped in the backcountry of Yellowstone. We’ve held hands in absolute awe while experiencing the Northern Lights above us. We’ve worked hard and played hard and truly tried to be good people, giving back in any way we could.
Once, when a friend was down on his luck, Brian and I delivered a crate of groceries and beer to his apartment, spending more than we needed to at the time. I’m always looking to do stuff like this, even when I should be looking out for me, yet Brian doesn’t say anything. He genuinely supports generosity and giving when and where we can. In the case of the studio, he certainly gave away more hours than what was booked, because he cared enough to spend his free time for the benefit of a band or musician.
Just a few of the many amazing and wonderful things about Brian (other than being incredibly handsome and sexy as hell):
FUNNY. Brian is so damn funny and quick-witted. And he never minded just acting silly, no matter what was going on. One of the things I hate so much about ALS is the fact that Brian can’t speak anymore. His eye gaze device can speak for him, but by the time he has typed out his joke or that witty comeback that he would have said before, the moment has passed.
He wants to say so much but can’t. It frustrates me to tears for him. I can’t fathom what it’s like for him. But he doesn’t complain.
ACTIVE. Brian used to ride his motorcycle to work every day. We lived in California for three years and he loved riding along the Pacific Coast Highway on his way to and from work. We’ve hiked more miles than I can count. He designed a deck and we built it together at old our house in Alpharetta. Brian has tackled so many home projects that I never would have realized you could do yourself. He’s taught me so much when it comes to that stuff.
He used to cut the grass and wash the cars and fix the stuff around the house. He liked that stuff and misses it. But he doesn’t complain.
ROMANTIC. Brian has always been and continues to be, thoughtful and sweet and I am incredibly lucky. It’s always just been easy with him. Easy to be myself. He supports me in a million ways.
Full disclosure, ALS doesn’t stop us from still being an old married couple and things aren’t perfect. We still argue and disagree on things. Plus, we are literally together 24/7 so we can get on each other’s nerves. We also have to agree on what content is going to be played out loud in the room. If you don’t know, Brian will watch just about anything, sigh. ha!
But seriously, I couldn’t ask for a better partner. Brian used to cook amazing dinners for me, draw me baths after “those days” at work. And he’ll honestly tell me if an outfit doesn’t flatter me! 🤣 He still wants to do those things for me and tells me so. But he doesn’t complain.
SMART. It’s hard to explain how smart Brian is. He’s smart in such a different way than me. Electronics and circuits and amps and volts and all that stuff come so easy to Brian. Sometimes he explains things to me in a way that seems simple to him but I’m still looking at him like Say whaaa? I’ve also caught him in the middle of an audio lecture about astrophysics, where he later tries to tell me about it and I’m like, that’s okay, I’m good.
The things he knows and understands both impress me and also make me continue to want to be curious. So many of the things he learns he wants to share with me, but often can’t, as typing it all out with his eyes would take up a lot of time and energy and he should use that for stuff he really wants to be doing. But he doesn’t complain.
MY HUSBAND AND BEST FRIEND. Most of all, Brian knew exactly when to hold me extra tight and tell me that everything was going to be okay, as long as we were together. I’d give anything I have to feel that hug and to hear those words in his own voice, especially in this crazy time.
For those that knew Brian before ALS, you’re lucky! Please share stories about him, I know you’ve got them. Post them to your social media, your blogs, wherever. And tag us! We’ve all had some good times and made some great memories. Let’s relive some of them, shall we?
If you’ve gotten to know Brian post-ALS, you’re still lucky! What an inspiration. I’m not kidding when I say that Brian does not complain. He leaves that to me, ha. But seriously, he gets up each morning with a positive attitude and finds humor and joy in each day. It’s astounding.
I need you to understand what a feat that is for someone with ALS. Brian can only move his eyes. He’s been trapped in his body for years. He has lived in a power wheelchair for the last four years. There are days when his secretions are just insane and all I can do is stand next to him and suction his trach and wipe his mouth and cry with him. Days like that are long and sad. We wonder how this is real life but then we get on with it. Brian does it with the most grace, and almost always with a smile. His attitude inspires me daily.
Just like Brian, people with ALS were people without ALS prior to one fateful day when their diagnosis was confirmed. There’s a distinct line in your life at that point. Life before ALS and then after. Even still, they are the same person inside and want to be treated that way. Most ALS patients have full cognitive function and are fully aware of everything that’s going on, including the fact that ‘they’ are slowly slipping away as ALS takes over.
Silver lining: Brian and I have enjoyed many years and adventures without ALS. We’ve had so many amazing experiences together. That created memories that we can dial up when things get down. On those days where it’s just too heavy one of us can look at the other and be like, “Remember that time…” and make each other smile. Thank you, Universe for some shine in this big pile of shit!
Here’s to Brian, and all PALS, then and now and always!!!
