When Herb was first diagnosed with end stage renal failure fifteen months ago, we turned our focus to dying and all the permutations and ramifications of the death of a husband, partner, father, breadwinner, friend and all around good guy.
Living with a diagnosis of an end stage illness is always waiting for the other shoe to fall. You go about your business and fill your days with busyness, but you also have one ear turned towards the cosmic, alert to the sounds of the clockwork universe slowing, a ping out of place that stirs your heart. You wait even as you live and you do.
We had decided with courage and bravado not to stop living as we were used to doing, because neither one of us wanted to stop being who we are, who we were. Herb didn't want to be the "sick guy," and he didn't want me to stop being the person he has always loved, the one with a multitude of interests, friends and causes.
But, still, there is a part of you that waits for an alarm to sound that will call you out of your everydayness and fling you into the activities of hurried, important phone calls to make arrangements with doctors and airlines, rushing to the airport to be where you're needed, talking to family members and comforting and calming, recalling that you are the best of the best when it comes to someone to be in charge in case of an emergency. It is exhausting.
Then he lived, and lived, and lived, and after more months than those hinted at but not quite promised, I decided that I couldn't live that way any more, and I decided to stop thinking of Herb as dying. That shift of framing where we were at was helpful for a short while. It gave me some breathing space to inhabit my days more fully, less distractedly.
Then it seemed like we were at another turning point. We came back from the Alaskan Inside Passage cruise with Herb enjoying the entire experience and not being overly taxed by the travel and excursions. But three days after our return, Herb came down with a bug of some sort that laid him low again, and I worried. This time, I was scared, and I said to him, "It's time to think about moving back to Colorado, to live where the rest of the family lives, because I don't want you to die alone."
Fast forward another month, and everything has settled back down. It turns out the bug was just a fleeting bug, here for four or five days and gone. Herb's energy returned enough that he took a consulting assignment that he said was really fun, his word. It was intellectually stimulating to help solve engineering problems and fun to be busy and productive.
Today we travel to Las Vegas for the big family and friend celebration of our daughter's marriage to her partner of four years. We are so excited for our girls and for our family. This is the same Chinese family that told me forty-some years ago when I married my son's father, an Irish American, that their children wouldn't be allowed to marry anyone who isn't Chinese. Of course, as time progressed, many of their children married non-Chinese spouses, and they love those spouses and the children of those unions. I am so proud to proclaim that this same Chinese family is rallying in force and with joyful acclaim to see Cecelia and Jamie married as the first LGBT couple in our family. (The girls were legally married in Massachusetts where they live earlier in June.) Hallelujah! The God of Ages is great indeed.