reflection
four minute read
you have a new job
When you have a lot of time to think about life, in a situation where life isn't a given, some things get really clear, really quickly. Like priorities and what's worthy of getting stressed out over. When the head doctor saw me in the hallway that Saturday he stopped and asked me if I worked, to which I answered yes, full time. He looked me square in the eye and said, "I'll write a request if I need to, but you're not going back to work for a while, you're taking FMLA leave, for as long as possible. He nodded his head toward John's room and informed me, “He is your new full time job.” His words were unexpected but it was also extremely comforting to have someone tell me something definitive. He was very clear and that felt good. It also meant we weren't leaving soon and that John was likely going to need care for a while.
At that point it occurred to me I needed to let my office know I wasn't going to be at work on Monday. I worked for an advertising agency and headed up several large accounts, so the thought of just dropping everything as it had been when I left the office on Friday seemed impossible, but also like the only option. Sitting in the recliner that one of the nurses had somehow brought to our room, I pulled out my phone and in the dark tapped out a cryptic message to the office manager saying we'd had a family emergency and I wouldn't be at work on Monday, or probably Tuesday either. She immediately sent a text back saying not to worry about anything and to get in touch when I could. It was the first interaction I'd had with someone outside of the hospital except for John's dad and it felt oddly exhausting to communicate outside of this sterile bubble we were living in.
The recliner was huge and my husband had brought a blanket for me so I pulled it around me as tightly as I could and leaned back into it's pastic-y relief. I listened to the now normal machine beeps, whirs, and whooshing of the ventilator and wondered if John was absorbing any of this. I assumed not because every few hours the nurses and doctors would give him a pretty rough shake and shout into his face, "John, squeeze your eyes if you can hear me, give me a thumbs up John, John, let us know you're there, squeeze my hand..." and on and on with not even as much as a twitch. I held my breath each time they ran through this drill because I so badly wanted him to do something and it was torture to watch him lay in complete stillness through the shouting and shaking. Maybe just not yet I kept saying to myself, he needs more time.
As often as I could, I pulled a chair next to John's bed so I could sit and hold his hand, but between bed adjustments, stomach tube suctioning, oral care, blood draws, IV bag changes, and lots of other procedures I didn't understand, it was hard to be very present in any consistent way. I felt like although the goal was to keep things calm and quiet, it was more like a perfectly orchestrated yet subdued circus act in constant motion. My husband, parents and a few family members were able to visit finally, which added to the activity level but was at least distracting and comforting at the same time.
There was sort of an odd feeling when someone would walk in the room because I had cried my tears by this point - but others hadn't and seeing John in the bed attached to a room full of machines was startling and horrific for them. Yet I was very focused on watching his heart rate monitor and ventilator and tracking all the ongoing procedures so probably appeared less emotional and more businesslike. I was busy writing down each temperature check, nurses names and medication doses - trying to keep track of what was dripping down from the three IV bags that hung above John's head and alarmed boldly each time their full, clear bellies got close to being empty.
It was early Sunday morning when my dad sent me a text saying he was on the way to the airport to pick up my ex-husband and younger son, and I was so glad and scared at the same time. Soon they’d start the hell of processing this whole thing in live action - we were on day three but they were going to get the full-on ICU experience directly from their flight and I knew it would be painful.
I asked my dad to let me know when they arrived so I could intercept them in the hallway to prep them for what they'd see, which sounded like a good plan only to completely not work because things were hectic and "plan" at this point was a ridiculous concept. So the door to John's room opened and his dad and 17-year-old brother walked in - fresh off a plane from San Diego. I jumped up to hug them both and the tears started all over again. Somehow, with all of us there together, the emotions skyrocketed and watching my youngest son stare at his older brother laying there, non-responsive, on life support, was something I can't accurately describe.
It was so wrong, and so unfair and so real. I hugged him from behind and laid my head against his back and felt his silent gasps and attempt to choke back the cry he probably wanted to let rip. He'd been dealing with this for so many years - and we'd had some pretty bad times already, but this was the worst, and again, he was watching his mom, dad, grandma, grandpa, aunt, uncle, cousin, stepdad, everyone, suffer the impact of John's addiction. It was sickening and heartbreaking and confusing and scary. Addiction always is.
being trained
72 hours have never felt so long. But that's how long John needed to be kept cold with the hopes that it would lessen the swelling in his brain and reduce the amount of damage to his organs. His kidneys were showing positive signs of recovery by Sunday so the doctor held off on dialysis, and a medication adjustment calmed his horrible shivering. My closest friends came to see us and one of John's few remaining "good" friends heard about his overdose and immediately drove 80 miles from her college to sit with him for hours. By Sunday the ICU was home and the charge nurse even let me sneak into the staff bathroom so I could shower. Any sense of self-care had vanished when we arrived at the ER so I'd been walking around in loose grey hospital socks with white grippy strips on the soles and a mis-matched pair of sweatpants and sweatshirt my husband had grabbed for me on a quick trip to our house. Of course, that was all irrelevant, but the shower did provide a moment of normalcy even though it was far from normal.
My little corner of the room was starting to resemble a mountain - blankets and pillows, gifts, snacks, clothes, towels, computer, phone and iPad stacked crazily on the recliner, which turned out to be a lifesaver. Flowers aren't allowed in the ICU so people were bringing food and small things that ended up strewn all over the place but were so appreciated and meaningful.
And as I sat hour after hour in that mountain of love in the recliner, I realized God had prepared me for this. I learned that my friend of 35 years, on Saturday morning, was the one who roamed the ICU hallways and demanded someone bring me a recliner - which doesn't sound all that significant until you really need one. And the reason she knew I needed one, and the reason I realized I'd been in training for this, is because she needed a "recliner" for 10 years, so, is technically an expert in the field of waiting. Her son, Luke*, who was like my own, fell off his skateboard when he was 15 years old, and spent three months in Seattle's largest trauma center's pediatric ICU. And then 6 months in Seattle Children's Hospital. And then 10 years in a coma at an assisted-living family home. And then she lost him, we all lost him, in 2014. It was a 10 year marathon of pain.
I only endured a small fraction of what she did during almost a full year of living in a hospital, but those hundreds of hours in Luke's room, identical to Johns, filled with machines and noises and a constant stream of caretakers, had been a proving ground for me. This was why seeing John in his current condition wasn't quite as jarring to me as it was for others...for me, and for my friend, it was literally deja vu. Down to the smell of the pungent, pink, foamy antibacterial soap and hand sanitizer you're required to slather yourself in every time you enter or leave the room. Over the course of Luke's 10 year fight to live, I'd seen this, plus his tracheotomy, severe atrophy, so many infections, round after round of pneumonia and countless surgeries, including one to remove a large portion of his skull. Those experiences provided me with an ability to function at a level I might not have been able to otherwise. I had been trained and I didn't even know it.
*Luke's name has been changed to protect his family's privacy