This is my ALS: A Love Story. It’s about my wife, Cara.
Cara and I met in 2002. Before we had kids, I dragged her on all sorts of crazy trips. Regular jaunts to Mexico, Nicaragua, Argentina, Europe… Small towns, hostels, huts on the beach, chicken buses, the works.
We got married in 2006 and knew we would have a lifetime of adventures ahead of us. I finally finished grad school and we moved to Columbia, SC to start our family. Mary Adair and James were born and a new chapter began. Then I somehow managed to get diagnosed with ALS in 2013. Cara was with me in the doctor’s office when we got the news. The diagnosis is hers as much as it is mine.
She pushes our family forward in spite of everything that ALS entails. We find new ways for the four of us to have adventures. For now, it means finding ones that are wheelchair accessible. Even that will change in the near future. We moved to Atlanta so we were somewhere where she would always have career options. We got season tickets to Atlanta United so the four of us had something else special to share. She found us a Disney cruise on to go on, and then jumped at the chance to tack on a US national team game on one end. One of the unexpected pleasures of these adventures is us for staying in the same room. Even if it means lights out at eight, waking up altogether is a special piece of the experience.
But in many ways, these discrete adventures are the easy part. You do your best to plan ahead and then roll the dice hoping that things work out. The hard part is the day-to-day. The physical workload that comes with one spouse being physically incapacitated. The mental stress of plotting a career and planning for your family’s future when you know how difficult the coming years will be. Knowing what the four of us will go through. Whether my progression continues to be steady but slow, or if it changes, the next five or 10 years will be impossibly difficult for each of us. She is no superhero. Nothing about this is easy or is something she is naturally programmed to do. She just does it. That is what’s required for our family. That is what it takes for us to still be focused on our little adventures.
When we were dating and she was in Boston and I was in North Carolina, we relished the idea of finally being in the same place and having simple moments on the couch. ALS is not easy on any of us. It is not fair. It only gets harder from here. But I still cherish those times. The moments to ourselves. I cherish our partnership. I cherish our relationship.
And through it all, through trips, through kids, through moves, through ALS, through adventures, she is my wife. I love her more and more each day.
