Charles and I were married for 15 years; our (amicable) divorce was finalised this past December. As some of you may remember, he was diagnosed at 48 with Cystic Fibrosis, and spent the last several years of our marriage going significantly downhill health-wise. He had a double lung transplant in January of 2011, and although it spelled the end of our relationship, it was the beginning of his second chance at life.
And he certainly took advantage of it… he went back to drumming for a belly-dancing group, found a girlfriend, started working on his ‘project car’ again (a 1972 Cadillac Miller Meteor station wagon), and spent time with his dad, kids, and grandbabies. He wanted to go back to work, but was waiting on getting hearing aids before trying to find something (nothing’s more frustrating than a counselor who keeps asking you to repeat yourself!). We’d had to declare bankruptcy because of the medical bills and lost our house as a result, but he moved in with his dad and made the most of it.
He was able to fulfil a years-long dream at the end of May; he returned to St. Augustine, FL, place of many childhood trips. At the beginning of the trip he started feeling ill, but ‘stuck it out’ as he so often would. When he returned he went into the hospital with a mild case of pneumonia, but never came back out. After five weeks on the vent and a feeding tube, it was time to let him go. His dad and children made the final decision, in accordance with his wishes, though I know it had to be extremely difficult for them.
Wednesday morning, the day of the family meeting to decide about the life support situation, I got up and wandered downstairs to glance out the window. It was a gorgeous day- contrary to all weather reports- and the tail end of the local 4th of July parade was going by the front of my house… the antique cars. Charles would have absolutely loved it, and I knew then what the meeting would bring, and that the sight outside my window was not a coincidence. It would be okay.
They disconnected the life support at 4pm that afternoon; at almost 5am on Thursday he died, surrounded by his dad and kids, listening to the Beach Boys.
Although he’ll be cremated, they had a viewing yesterday and today… he was dressed in jeans and a t-shirt with the famous “Never give in” quote from Winston Churchill, and propped up in the corner by the casket is the 1920s-era scythe he just purchased off eBay a few months ago. I watched the tribute video that the funeral home set up, and it was really nice… including the not-quite-typical song choices of “I am a Rock” and “Roll over Beethoven.” I’ve been told they’ll be playing some of my recommendations at the funeral itself (“Behind Blue Eyes” and “Don’t Fear the Reaper”). I’ve no doubt there will be a packed house.
One of Charles’ biggest concerns was that he wouldn’t accomplish anything “big” in his life, and would be forgotten, but there was no way anyone could ever forget such a walking embodiment of how to live life to its fullest. As he used to tell the kids on the pulmonary floor of the hospital, “Make sure it’s the disease that gets you, not the diagnosis.” The disease finally got him, but he never let the diagnosis- or anything the doctors told him- take him down. He had the strangest sense of humour (that project car? that’s a hearse, in case you didn’t recognise it…), the biggest heart, the keenest mind (until the oxygen deprivation interfered), and the strongest will of anyone I’ve ever known. It was an honor to have shared his life for as long as I did, even though it didn’t work out as we’d planned.
My mom is not happy that I’ve chosen to not attend the funeral, but it’s not really up to her. I will honor him here in my own way, and I sent flowers to the family. I’ve talked (well, texted) more with my former stepdaughter in the past two weeks than in the last few years of my marriage to her dad, and she is doing a wonderful job of putting everything together… especially since she’s several months pregnant.
Tonight I’ll watch the Wicker Man and hoist a glass in honor of the incomparable Charles, who no doubt is in process of hunting down the Ferryman to ask him for a job. And I’ll never forget him.
I also want to take a moment to express my gratitude and appreciation for the doctors and staff at UAB hospital, who fought for and with him for the past five years. They were equal parts intrigued, enamoured, and infuriated by him that whole time (I knew how they felt!!), but they never gave up on him (even when they temporarily took him off the lung transplant list because he was so darn stubborn), right until the very end. My heart goes out to them, because I know they must feel this loss as deeply as we do.