Scar tissue

This morning I ran for 12 minutes, which represents a significant improvement in my cardiovascular fitness.  That may sound surprising, but it’s true. This heart has been steadfast all my life, a workhorse until now. I ran my first marathon in under four hours and ran my best time of 3:33 inside the Arctic Circle one night in June when the sun never set. It was the “Midnight Marathon” in Trömso, Norway– if you run marathons check it out. Perfect conditions, and instead of shiny foil to warm you at the finish line, each runner is handed a thick woollen blanket.  I wistfully digress.

Back to heart matters. During the first winter after we lost Clay, just when a novel coronavirus was getting ready to introduce itself to the world, I went to A&E in the middle of the night with chest pain. It was a strange experience, like Twilight Zone strange, because after some routine checks and a blood test, I found myself in the acute cardiac ward for five days. They hadn’t said anything about my condition, and I genuinely thought they’d run out of beds everywhere else. I felt mostly fine, chest pain coming and going, and had expected to be sent home straight away. Now I was in a ward with five other patients who looked like they really belonged there. Almost immediately I watched a woman nearly die right in front of me. Doctors, nurses, and all available staff running into the room, surrounding her bed and aggressively charging in with those shock paddles I’d only ever seen on TV. Our beds faced each other, and I’ll never forget the look on her face each time she woke from a sleep in the days that followed. There was this terror in her eyes for just a few seconds until she placed herself there in the room, alive. Something in her knew she had come very close.

Nobody was allowed visitors because of, they said, a Noro virus outbreak in the next ward, but as I read the headlines coming out of Wuhan that January I was convinced that St Peter’s secretly had the first European case of the coronavirus. We were all really bored, and my mind got busy. We became good pals in there, and I think they actually kept me in so long because I was useful in looking after the mumbling white-haired lady in the bed on my right. She had dementia, and I was mostly just required to graciously accept the box of tissues she repeatedly presented to me on an imaginary tray, which was an imaginary roast dinner that I’d watched her take out of an imaginary oven, having prepared it for me (her young son) and my brother. I also had to press the call button when she stood up from her bed (to go fetch the children) so the nurses could come tuck her back in. Somewhere in my subconscious I logged this to try one day. Make a nice risotto for Clay. After a few days we were all given crisp new gowns in a very cheerful colour pink. It was a real mood lifter, and we staged a little photo shoot, dancing around the various cables connecting each of us to our monitors.

I eventually learned that I was there in the acute cardiac ward because they thought I’d had a heart attack. I’ve never had a heart attack so I don’t know what it feels like, but I was pretty sure I hadn’t had one.  I have seen one or two on tv over the years (the dramatic collapse of one of the ruthless men of the “Dallas” patriarchy comes to mind), and I was pretty sure there was meant to be chest clutching and falling to ones knees, or at least a whole lot more pain than I’d experienced. I left hospital after a thorough evaluation showed that my arteries and valves were tip top, but my heart muscle itself was swollen. They didn’t really know why, and it felt unsettling.  

Something wasn’t right, and I continued to have erratic heart rhythms for several months.  Finally, a little more than a year after Clay’s death, I was diagnosed with a very rare immune condition affecting my heart and lungs. The reporting cardiologist would never know how perceptive he sounded, in a poetic sort of way, as he read that first radiology report. “You have scarring on your heart, showing evidence of a significant cardiac event.”

My activity was immediately restricted, and I wasn’t even permitted to climb the stairs too quickly. The risks associated with cardiac sarcoidosis are heart failure or sudden death, so I was on board with whatever they required of me, including the high-dose steroids, immunosuppressants, and multiple heart failure meds I’ve been on for the last 15 months. I also had a very clever device the size of a USB stick implanted which keeps track of my every heartbeat, sending data off to my team of doctors in London through an app on my phone.  This little device has left me worry-free about my heart, which is amazing.

The great news is that the treatment is working to reduce the inflammation in my heart, and although the scarring will always be there, my heart function has improved a lot– enough for me to run 12 minutes without stopping. A year ago, climbing the stairs would make me breathless. Sometimes it’s hard looking at photos of my swollen “moon face” from these steroids, or not being able to fit into any of my clothes because of the extra bit around my middle. Even harder, dare I say, is the abstinence from alcohol required by the immunosuppressant therapy. As sad as it sounds, television and the Elastic Waistband became companion comforts during periods of lockdown.

The Mind/Body connection seems to be on everyone’s lips these days, and I think this diagnosis is a rather obvious example of how trauma, emotional upheaval or stress will manifest in the body in some way at some point. The doctors told me that the trauma I’ve suffered was enough to trigger this condition.  It must be one of the reasons we the bereaved are encouraged to express our grief—anger, sorrow, deep pain– and to resist covering it with a smile, work, alcohol, or whatever’s immediately available to urgently numb the pain.  Better out than in, sort of thing, which I’ve always subscribed to anyway.

For those of us whose grief is “complicated,” like the sudden and violent death of a child, it is even more important. I remember a warning from a friend who visited us at home in those first weeks. He had lost his brother as a child, and they were never permitted to talk about him again in the family. I was astonished, and heartbroken for him. His message was very much that we must “keep on talking.” Clay is so much a part of me, I could never, ever stop, but often the timing is hard. We’re not always in the same space– emotionally or vis a vis our individual relationships to the loss of him.

I do fret about the impact of so many months of confinement on the world during the lockdown: families in cities, the vulnerable, the poor, the lonely. There must be a tendency for each of us to minimise potential effects on us personally, simply because everyone has had to go through it—who are we to complain? Lockdown for me was a value approaching zero on the hardship scale, simply due to the eclipsing effect of present suffering, but no doubt I will have been affected. And so serious, it’s been, for those who have suffered badly with the virus, or lost someone.

A woman who lost her daughter many years ago wrote to us to share her experience of grieving en famille. Since everyone in the family is suffering, she explained, no one family member remains in a position to minister to the rest. Perhaps it’s a bit like that with the pandemic. We may all be in this together, but sadly many live in communities where nobody is fit to help anyone else. I was grateful for that letter. It helped me to thoughtfully choose the “emergency oxygen mask” approach—take urgent care of my own oxygen supply so I can then help husband, son and daughter with theirs….

As the massive Airbus 380 rapidly nosedives toward a vast ocean from 38,000 feet.  

Before eventually levelling off and miraculously deploying secret pontoons, Bond-like, from its wide unerbelly for the risky but safe landing upon an unkonwn sea.