Don't Cry Because It's Over...
...Smile Because It Happened ~ Dr. Seuss
Keith and I married 18 years ago today; he was buried 16 years ago today. The song refrain going through my head today is from Nirvana's 'All Apologies’: "In the sun, in the sun, I feel as one / In the sun, in the sun / Married, buried".
So, after a life of unexpected adventures, Keith was married and buried on the same date. He asked for no apologies for being born with a disease that kept him in a wheelchair needing a ventilator. He also offered no apologies for living a full life that others didn’t expect him to have.
We connected in 2006 at a meeting about reimagining housing. In 2008, halfway through our time together, Keith was hospitalized for 3-1/2 months. It was in April 2008, after a long night of talking, that we looked at each other and asked what we were waiting for. We should get married because we didn't know how much time we had. It was a dream of his to be married, something he never expected to be able to do given his diagnosis of Spinal Muscular Atrophy as a child. At that time, he was told he’d likely not make it past the age of 7. When we married, he was 43, so we could both hear the clock ticking.
We had the ceremony at the post-hospital rehab center, and the next day, he was rushed to the cardiac ICU, where it was touch-and-go. Because of the uncertainty, we decided to have a big party with all our friends and family on our 2-year anniversary. And, we did. However, it was a lesson in being specific in what you wish for. We had the gathering of friends and family, but it was for his memorial service in his hometown of Victoria, Texas. So we had our celebration, but for a very different reason.
Keith changed everything I believed about how life could be, and what it meant to have a physical disability in a world that was not designed by or for those who do. I was happy to be able to make his dream of being married come true, because it was a shared dream. For some, the two years we were husband and wife would be a drop in the bucket time-wise, but it was what we had, so we made the most of it.
Our partnership lives on in the work of Bene Esse. It's everything we talked about that last year of his life as we worked on the WALT project, and so much more. Although he’s no longer here in body, his spirit imbues all of the work I do with my colleagues in Bene Esse, especially in the arenas of accessibility and inclusion. After all, we have to remember that we are all TABs: Temporarily Able Bodied, not so different after all.
Keith used to say that it’s not just about getting in the door, but about having the tools to create a life of meaning once you are there. At Bene Esse, we understand this truth, and our communities are designed with it in mind.
Final Thought…
You can't predict how the story will unfold; you have to be prepared to keep living it. And it was a true gift to be able to live it with Keith.