Catastrophe & hope.

[From October 23, 2017: I am forever thankful for good friends who have seen behind the curtain… and love us anyway. And spoiler alert, yes, we went to that concert in Chicago!]

We had a great weekend planned. Our dear friends were coming to visit with their beloved black lab, Maggie, in tow. It was going to be Stella’s first time to meet Maggie, so the four of us were like two sets of parents arranging the perfect childhood friendship. Mostly, though, we were excited to spend some low-key time with people we share a great history with, people we love like family.

The four humans went to dinner on Friday night — a rarity for us anymore — at one of my favorite local haunts. Walking up to the restaurant, embarrassingly late for our reservation, we joked about how our world now runs on “Chelli time,” impervious to the demands of society around us, but particularly the demands of one specific ever-impatient husband. We ordered food, there were drinks, and lots of great conversation. When we’re with Rob & Kate, we talk about music and design and cars and dogs and food and god and family, usually intermixed in the same conversation. Rob’s been there with Chelli & me from the beginning, from the very first time I brought my new blonde girlfriend home from Oklahoma to meet the family.

On this particular night, though, with dinner behind us and a dessert menu on the way, our quiet meal came to an abrupt end, replaced by the sort of dramatic event that tends to rear its unexpectedly ugly head when you live in a world dominated by chronic, degenerative illness. In what seemed like an instant, our celebratory dinner with friends morphed into a frightening medical crisis that would not be managed or contained. I’m not sure how long we were in the restaurant in full medical crisis — maybe ten, twelve minutes? — but it seemed like hours. Eventually, when it was clear the situation was not getting better, we decided to get Chelli out of there. I tossed my keys to Rob, who went for the car, while Kate stayed behind to help me maneuver Chelli out of the restaurant and to our vehicle waiting on the front sidewalk, where Rob had expertly parked. Chelli seemed to be having some sort of seizure. She couldn’t walk and was barely communicating, so I decided to carry her, both of us covered in her vomit and tears, through the restaurant and to the car.

I’d like to tell you that other people in the restaurant helped or even seemed sympathetic to our crisis, but that’s not what happened. Instead, the humiliating & frightening reality of our shit storm was on full display for a room full of unconcerned strangers, content to whisper and watch me carry my wife to the door.

Whenever one of these episodes makes itself known, we have the same debate/argument. Do we go to the Emergency Room, knowing full well the medical personnel there will be completely unfamiliar with her history or diagnoses and will, best case scenario, admit her into a place full of every bad thing her shattered immune system will then absorb like a sponge? Or, the second bad option, do we attempt to manage it on our own, with all of the potential risks and complications that invariably accompany such a decision? Like many times before, I quietly went through the shorthand version of our predictable argument as I held Chelli’s head in my lap, trying to keep her from aspirating further, while Rob sped home.

As much as we’ve shared about the details of our life in the midst of this shit storm, there is still so much of it — usually the worst, most embarrassing, and sometimes emotionally debilitating parts of it — that I never talk about. I’m not entirely sure why. Maybe it’s shame, or because it’s hard to find the words, or because I don’t want to make it “real,” or because I just don’t want the people around us to see Chelli that way. When somebody does get a glimpse behind the curtain, though, their reaction is usually some version of “my god, I had no idea.” Whether I say it out loud or not, my reply is always, “yes, by design.”

Even as the situation in the restaurant was unfolding on Friday night, I knew there would come a time, after the crisis was finally fully behind us, when Chelli would be both mortified and saddened that our dinner with friends had turned into such a shit show. And yet, all I could think was how grateful I was that our friends were there with us. Truthfully, I don’t know how I would have managed to get her out of that restaurant without their help. My obsessive mind has spent more than a few moments playing it over in my head, trying to imagine what I would have done without their assistance, or maybe what I will do next time. Because there is always a next time.

When we have good experiences — like we did a few weekends ago at the house with a dozen or so friends — we feel emboldened to take more chances, to actually live this life of ours, warts and all, more fully. But when we have negative experiences — “episodes,” we call them — it’s easy to shut it all down, allowing one disaster to overshadow ten successes. And so now, that’s the challenge.

Our 25th anniversary is coming up and the one thing Chelli wanted was to see Tori Amos play a show in Chicago, just like we did several years ago before our world turned on its ear. It was a big ask, she knew, but she reminded me that we needed to take the risk, to live life, even when it’s not necessarily the life we would have chosen. So, a few weeks ago, I bought tickets to the show and the short plane ride there, set for this coming weekend. After I finally got her in bed on Friday night, though, the very first thing to cross my mind was the stupid upcoming Tori trip. How could I possibly get this woman on a plane in a few short days?

Chelli’s been in a new round of specialized physical therapy, an effort to build up the muscles in her neck to compensate for the bone and tissue degeneration that often leads to episodes like we experienced on Friday night. Similarly, I think “hope” is a muscle, too, meant to add strength to a situation when the infrastructure fails. I don’t know what we’ll do this weekend yet, as we’re still in the midst of that same conversation again: when do we risk it, when do we close ranks, when do we dare to live. There are no easy answers; there are just good experiences and bad. Somewhere in the mix, there’s hope. What I can tell you is that holding on to hope is a hell of a lot easier in the former, but far more important in the latter. So, maybe we need to do some specialized exercises to strengthen our hope muscle, just like Chelli with her neck in physical therapy, so it’s ready to assist with the heavy lifting when all of our infrastructure fails.