Can you hear it? I’m counting down to landfall. After almost a year of getting bounced around dealing with cytomeglovirus (CMV) and foscarnet, I feel like I am finally returning to Earth.
I’m convinced it’s going to be perfect when I stop my tumble out of the sky. Now that my days of foscarnet and CMV are over, I can slip seamlessly back into the gravity of my old life.
I will enjoy the feeling of having the ground beneath my feet again as I realise my freedom. I am done with getting up at 6 am to get to the hospital for 7:30 am. I will no longer come home and collapse into bed or the couch. No more will I pee every two hours on schedule all night because 2.5 litres of fluid have been pumped into my body during the day.
My sense of direction will return to me as gravity is restored. Up will be up, down will be down, and the horizon will stay level. My brain will work the way I want it to again. Sluggish, forgetful thinking processes will be banned and my constant anxiety will vanish as if by magic.
I’m getting closer. Soon the laws of gravity will make my body obey me again. Soon I won’t be brushing off invitations to get together with friends because I am too exhausted. Soon I will be back in control of my life.
The thing is, the ground is hard and gravity can be a bitch.
When I’m in the acute stage of serious illness, I feel like I’ve been hurdled into outer space. Everything that was normal and solid in my life seems to dissolve as I find myself struggling to just survive. The illness itself doesn’t even have to be life threatening, as long as treating the illness requires a singular focus and major life changes. It’s called crisis living, and it is something I am painfully familliar with.
Almost a year has past since this mess with CMV began. I remember I had just written a post called Independence Day, a symbol of the successful re-entry I had made after the crisis of heart failure and transplant. A week later I entered a new crisis situation, this one involving four different drugs, three lengthy hospital stays, two peripherally inserted central catheters (PICC lines) and over two hundred and ten hours spent in the transplant day unit. My life is supposed to be back to normal now, crisis ended. But this time I am having trouble coming back to Earth.
Like real astronauts coming back from outer space, every time I emerge from crisis living, I need time to adjust. Living in outer space requires different skills than living on Earth does, and the side effects for astronauts can include things like bone density loss, muscular atrophy, and fluid shift.
For me, adjusting is not just about re-aclimating my body to being healthy. It’s about changing my attitudes: turning off my anxiety and panic, and realising that not everything is a life and death situation anymore.
Previous experience has taught me that I could be hurdled back into outer space at any moment. It feels like as soon as I recover from a crisis and gain some indepence again, crisis strikes anew. With all the upheveal, regular living ceases to exist.
Author Siddhartha Mukherjee supports my feelings by comparing having cancer to being in a concentration camp. “If no life existed outside the camp, then the distorted logic by which the camp operated became life as usual.”
It seems unthinkable that crisis living, prompted by life in a concentration camp or dealing with a chronic illness can become someone’s normal, but it does. Last week the normality of my crisis-driven life really hit me when for the first time probably since my heart transplant, I had a week with no hospital visits, no doctors, no medical tests and no bloodwork. I cried as I was able to take a step back and really realise all that has become my normal over the past two years.
What I hate about re-entry from crisis living is that every time I have to do it, it never follows my anticipated timeline. Somehow I want it to be like magic, one minute I am entrenched in crisis living and the next I am fully re-intergrated back into the exact life I had before.
But it never seems to work out quite the way I’ve planned. Instead, this post which I had started and hoped to finish in April, took me till July to complete.
In the meantime, the thing I’ve realised is if there is one thing that a trip to outer space or a time of crisis living have in common, it is that they are permanently life-changing.