Keegan’s Piece of Advice to Anyone With AxSpa

Tonight was the first night our young family had a moment to enjoy dinner on our back porch. We finally set up the table and chairs ordered months go. It wasn’t raining. Finally! A beautiful moment as a family during early summer. It was a surreal moment. My mind flashed back to moments over the past 10 years with Keegan, my husband with AxSpa, and the rollercoaster of his diagnosis, treatment, and surgeries. I remember vividly the many, many times I felt complete despair.

The light at the end of the tunnel

But tonight, as I watched our 3-year-old and 1-year-old sit at their own table, it felt like I could see the light at the end of the tunnel. Like things were beginning to finally settle in the 10-year journey of Keegan’s AxSpa diagnosis at 23, many treatment trials in our mid-20s, and 2 total hip replacements at 28.

So I asked Keegan, “What’s the one piece of advice you’d give newly diagnosed Keegan 10 years ago?” Without thinking he replied, “Don’t give up.”

Honestly, the answer surprised me. Keegan tends to reply with very logistical or practical advice. “Tell me more,” I asked. He began to tell me about how dark things get when diagnosed with a life-changing disease. There are times and moments when he couldn’t help but be cynical, but overall, it was a moment. He never let those get him down to the point of losing hope.

When he looks back across the time, despite some really awful doctor interactions and treatments that never ended up doing any good, it’s easy to feel like things went wrong. But overall? Yes, his health is better. But we both know that new challenges are bound to pop up in the future. So, he's decided having realistic optimism is the way to go.

It's not always easy, but recognizing that life can and will find ways to support him is what he chooses to believe. For me, it can a bit harder. I sometimes get overwhelmed in the day-to-day feeling like I can't help his pain or his brain fog. I've heard from other caregivers that seeing your loved one suffering is sometimes harder than the actual suffering they're going through. I can't help myself but ask Keegan a million times a day, "How are you? Is everything okay?" I need reassurance from him that he's still doing alright.

Then, he reminded me about how much AxSpa affected his life

It’d been so long that I forgot some of the suffering he went through. For example, for nearly a year in our mid-20s, Keegan suffered from hypnic jerks. While dozing off, his body would involuntarily jerk, usually his legs. It’d cause him to startle awake. It was awful because every time he’d finally begin to fall asleep again, another hypnic jerk came along. He even did an entire painting series on hypnic jerks.

It’s been many years since his last hypnic jerk. He knows that life has brought along more challenges now as a stay-at-home dad with two total hip replacements and a new fibromyalgia diagnosis. But it’s good to know that things will and do change. That pain, although every day, can be managed, and there are doctors out there who genuinely want to help. (Albeit, it takes time and searching.)

So—to all of you out there having a tough day, hang in there. Don’t give up.