The Locked Box of Grief

What a difference a day makes. Or a week or a year. Eight weeks before I took this photo, I started to see signs of a bladder infection. Two weeks before I took this photo, I just returned home from the hospital. The night before I took it, I was in a losing battle with grief. Two hours before, I did a workout for the first time in months. Four hours after, I was singing in the car with my kids.

Time is often credited with magical healing powers, but nothing heals if you don’t do the work or make the choice to put in the effort. Yes, a day, or even an hour, can make a difference. But all it is, is space. Space to gain perspective, reassess and use tools effectively to make your next move.  

Bladder infections are a common occurrence in the spinal cord injury community. Broken bladders require catheterization which means our risk for infection runs higher than those who can pee at will. In late August, I noticed signs of an infection. One week later, I started my first round of antibiotics. They didn’t work.

I started my second round of antibiotics. They didn’t work either. 

Due to my new and (less than) exciting PEG allergy, choosing antibiotics is a trickier game than it used to be, so my doctor tried something new. One month after I first noticed symptoms, I started my third round of antibiotics: a sulfa based medication. They seemed to work…for the bladder infection that is. But they wreaked havoc on my body.

I was in the hospital for three days with aseptic meningitis – a rare but serious reaction to the antibiotics. When I arrived home, my head still ached wildly. My daily routine was nothing more than a schedule of sleep and pain medication, and I couldn’t see beyond my next dose. I wore pajamas and spent most hours of the day in bed. I didn’t think I would get better. I barely ate, couldn’t imagine driving and had a difficult time focusing on anything for more than a few minutes at a time.

But every day, little-by-little, the headache retreated, and my energy returned. I stopped counting down the minutes until I could take more pain medication. Soon, I no longer needed it at all. The bladder infection was gone. Finally, by mid-October, I was on the other side of it.

There is something that happens when you come out the other side of a difficult experience. You’re no longer in survival mode. You did what you needed to do to move through it and then you’re left to dissect everything that happened. For me, it’s always heavier, after. And it always triggers my grief.

Whenever grief creeps out of its locked box, there is a tipping point. I teeter on the edge between pushing it back in or setting it free. It’s an agonizing place to be. Tears threaten but I don’t let them spill over. A heated debate develops inside my head – a standoff between the person I think I am and the person my grief wants me to be – and I don’t want to open the box. I don’t have the energy required to deal with the box. But almost always, something forces it. On this night, it was checking on my kids before I went to bed. 

They were asleep. I pulled up the blanket that my daughter kicked off; brushed the hair off my son’s forehead and made sure his brother was still breathing under the mound of blankets he buried himself under. And when I went to each of them, I thought You are the only reason I’m still doing this.

That’s when I knew the lock on the box was about to break open. They aren’t my only reason for continuing to live with a spinal cord injury. But when I start to believe they are, I know I’ve supressed the grief long enough. My desire to live is not their responsibility to carry.

Tears streamed down my face as my mind raced through the list of ways that my disability makes my life worse. It was a release of emotions I strategically keep at bay and, in the midst of it – when I couldn’t breathe through my nose and tissues were balled up in my fist – it felt like the most authentic and honest version of me. As though whenever the box is locked, I’m merely acting.

Deep breaths followed. Then sleep. That’s when time did its thing and put space between me and the raw emotions that spiralled out of control. By morning I saw glimmers of the life I love. I did a workout and even opened my makeup bag that had sat abandoned for weeks. I re-locked my box of grief. Put it away until next time.

I know that I’d be lying if I said I never faked it – pasted on a smile and said the right things while quietly cursing my disabled existence – but saying that I’m always faking it, isn’t the truth either. My true-self lies somewhere on the spectrum between miserable and happy and where I land changes constantly. 

But isn’t that just life? Good days. Bad Days. Grieving, healing and singing in the car?