My left lung collapsed twice a couple of years ago over a course of a month. One Friday morning, I was at a hot yoga class holding pose #2, and I felt a stabbing sensation on my upper left back region, followed by an increased shortness of breath. I’ve had previous lung collapses on the right so I knew exactly what this feeling was when it happened. Rather than leave abruptly, I patiently finished out the rest of the 24 poses, drove home calmly, took a shower, ate a snack and then called my husband to take me to ER. And all the while I kept thinking “I can’t believe this is happening again.”
“Why did you wait so long to call?” my husband asked. I waited because I knew all about the impending surgery, chest tubes, new scars, week-long stays at the hospital, pain pills, lingering pain, and so on. This was not my first rodeo and I wasn’t in a rush to get it all started. I also knew that we had a trip planned to go to Alaska in three weeks that I would have to cancel because recovery could take a few months. But wait, there’s more. My daughter was about to graduate pre-school in a week and I would miss the whole cap and gown thing along with the performance the class had planned. My son won a couple of awards at school and the ceremony was in a few days. Plus, he had a soccer tournament over the weekend. Wasn’t going to make either of those. Last but not least, I had finally given my resignation notice at work and was finishing out my last two weeks when this happened. I had absolutely NO time in my busy life to fit in a lung collapse, which is why I sat through hot yoga and waited to make the call.
Apparently I was more concerned about the inconvenient timing of the lung collapse and the disruption to my schedule than I was about the disease itself and its’ possible progression. Besides, having had previous lung collapses and surgeries, I had come to accept that they were par for the course with LAM and that I just needed to get on with it. So I did.
I was discharged from ER that Friday afternoon after finding out that I had a 30% collapse and was scheduled for surgery to repair my left lung the following Monday morning with strict orders to “take it easy” over the weekend. So rather than stand up and cheer, I sat in my camping chair while I watched my son play soccer at his tournament. While I was at it, I got my groceries and laundry done, and arranged for the kids’ carpool in anticipation of the upcoming week. And having learned my lesson from previous surgeries, I made sure I shaved my legs.
Surgery went according to plan but I still had to stay at the hospital for a week to make sure that my lung stayed inflated. I asked my friends not to visit, because being in a hospital gown with dirty hair and a chest tube stuck in you is uncomfortable enough. I certainly didn’t need forced humor to lighten the situation or “you poor thing” to add to that discomfort. Of course, I now know that I made unfair presumptions about my friends’ reactions, but who can maintain any kind of perspective when you’re feeling so vulnerable?
I was discharged after a week, and with regular doses of narcotics to ease the pain, I left the hospital feeling great. So great in fact, that I decided to carry on with life at the same tempo, which of course, is irrational behavior considering I just had major surgery. The week following my discharge, I had friends over for lunch, drove the kids to and from their summer camp, had a lovely field trip to the botanical gardens, went shopping, went out for dinner a few times, got caught up on my laundry and other chores, and so on. This is what ‘getting on with it’ looked like. Except it really wasn’t. It was more like avoidance.
You’d never have known that I was living with a rare disease and had just had mechanical pleurodesis, where my surgeon manually stroked the membrane surrounding my left lung with a piece of gauze in order to cause inflammation so that the outer membrane of my lung sticks to the inside membrane of my chest wall, minimizing the possibility of future lung collapses. What? Or that for 5 days, I had a chest tube placed between my ribs into the space around my left lung to help drain the air and fluid, allowing my lung to re-expand and it hurt like hell every time I took a deep breath or moved.
If that all sounds terrifying, painful, and traumatic, it’s because it was. But you wouldn’t have known it because I never gave expression to, nor did I acknowledge the pain, anxiety, and fear I felt about having LAM. Plus the post-surgery narcotics masked the physical and emotional pain and gave me a false sense of well-being. And really, who wouldn’t pick oxy-induced euphoria over sugar-free grief?
In retrospect, staying busy after my surgery left me feeling unsettled and dazed. I read this article where the author described herself as not living her life, but simply functioning in it. That was me, just going through the motions. Sure some of it may have been because of all the medications and trauma from the surgery and chest tubes. But all the to-do lists, kids playdates, shopping, random house projects, crafts (I made an incredible hulk key chain out of rainbow loom for God sakes), was just s-t-u-f-f that served as a distraction from what was really happening. I was using my over scheduled calendar to avoid facing LAM.
And then it happened again. Exactly two weeks later, I felt the same stabbing pain on my left lung, and so I went through the same motions – same ER admissions clerk, same X-ray technician, same hospital room, same nurses on the pulmonary floor, same surgeon and fellow, same week-long stay, same, same, same. And although my initial reaction was the same too – to chase the pain away with meds and my google calendar – this time I knew deep down inside, that my habit of using avoidance as a coping mechanism had to end and I desparatley needed to learn to switch gears from running on auto-pilot to consciously taking control of my life, starting with a big time out to allow myself to feel the grief that came with finally accepting LAM.