Ways I Didn't Expect AS to Affect Our Lives

Looking back on my life, it's always strange to think about what it was like in college. Keegan, my husband with AS, was just beginning to show symptoms. We studied at the same university--me, a book nerd, and Keegan, an aspiring artist. I didn't really think that Keegan's symptoms came from an underlying condition. He was a dishwasher at a college cafeteria! Clearly, that had to be his back pain.

I forget to communicate to family sometimes what it's like to be around someone with AS and chronic pain. Before we travel back home, we remind folks to reset their expectations, especially physically. Each day is different. Each moment is different. And patience is key. Our "normal" is just really just getting used to what it's like to live with AS as a family. We get into our routines and have become accustomed to adjusting as needed.

AS on paper looks pretty straightforward: you have pain, fatigue, limited mobility, and maybe a handful of other symptoms. What I didn't expect was how it would totally transform how we would live day today. How it would impact large decisions in our lives, and how it ultimately helped us be more present.

Fatigue hits at any time

Just reading the symptom "fatigue" isn't really the best way to describe AS. I assumed this meant Keegan would be tired sometimes. Nope, it means that fatigue can come in like an unexpected thunderstorm in the summer. It rolls in, and completely wipes Keegan's energy levels. Sometimes it's so quick I worry something bad happened or he's going to pass out.  For Keegan, exhaustion is the worst part of AS. (Coffee and exercise only go so far.)

Plans might have to change

I knew Keegan's capabilities would change, but his AS taught us how to be flexible and always consider other options. This is particularly rough with social events. If pain or brain fog rolls in last minute, going to hang out with friends is incredibly challenging. There are moments where it's tough for Keegan to accept this. It's hard to feel like he's not in control of his own body. But honoring his body is the best thing he can do for himself. It's an act of love and self-care.

That's why we often hang out with smaller groups of friends, just in case we need to have them come over. One of Keegan's favorite things to do is invite friends over for drinks and freshly baked cookies after our daughter goes to sleep. Or have a drawing night with friends. Or play Dungeons and Dragons online with friends.

Don't apologize for pain, just be present and supportive

It's taken time to learn how to respond to Keegan when he's in pain. My go-to used to be, "Oh my god, I'm so sorry." And then become feel paralyzed not knowing how to help. I felt like I had to read his brain to try to figure out how to get rid of his pain. For us, this is the wrong approach, and one family and friends also mimic. Saying sorry won't help, and the sentiment gets on Keegan's nerves. Instead, I ask Keegan, "What's something I can do to help you right now?" Sometimes that's watching Kaya, our daughter, so he can take medicine. Other times, it's having him lay down so I can give him a gentle back massage. Most of the time, it's being with him and listening to the pain he's having. (My go-to phrase being, "Wow, that really sounds awful.") Letting him vent releases the stress, and sometimes helps his pain.

We cherish moments much more than we used to

I never expected that AS would teach me something valuable and helpful in life. Because Keegan's good times, that still come with pain, don't last forever, we take advantage of that time. In essence, the lesson of impermanence helped us seize the days he's feeling good. I remember when we first had our daughter, I was delighted to see him up and moving with her. At that moment, the stress of having a newborn would melt. And even during the tough days, I remember that I can still bring Keegan some happiness. Maybe it's a goofy Youtube video or just spending time with him while he rests on the couch, but I'm present with him. Being co-located and just relaxing is enough.

How has AS affected your life in ways you didn't anticipate?