I haven’t been sleeping well. Insomnia is a problem that comes and goes and when it arrives, it’s crippling. It begins a viscious cycle of anxiety, over-thinking, obsession and paranoia.
I finally fall asleep. I dream. I wake up in a pool of sweat. As I relax, thoughts rush in. Memories. Old moments I had discarded a long time ago. Complete with sounds. Smells. Feelings. Old feelings I had grown out of, or so I thought.
I spend my days tired, in a fog of surrealism, painstakingly finding small, manageable tasks on my to-do list and ticking them off. I can manage the days. I have collected a good skill set of tricks to get through dislocating ribs, the sharp shooting pain of nerves impinged by bone when I walk, migraines, this case of the flu that has lasted three weeks and I even manage the fear.
Fear has never been my nemesis. I do not find it difficult to act despite of fear. I can walk on dislocated bones, I can walk with a sprained ankle, I can dislocate my thumb attempting to open a bottle cap, fix it and do it again on the second and third and fourth attempt. Independence is important to me. It’s my life line. I want to open my own bottles and jars and toothpaste tubes because pain is not the enemy. I have made my peace with the idiosyncracies of my body.
My nemesis is lack of control. I get the flu which then triggers some breathing issues, the coughing dislocates ribs, the not-eating causes acid-reflux, migraine attacks creep in and consume day after day and I loose the ability to do even the little things.
At night, when I am exhausted, when I stop coping, when I slow down and relax, I drown in thoughts and memories and what if’s that may never happen. There is no distraction that keep me distracted, no temporal guidance that reassures me that this too, will pass. As a teenager, I was terrified of insomnia and these nights that go on forever. There is no dimensions at night, no boundaries, no feedback.
I learned to look for the stars, but now, clouds are persistent, there is no stars just depressing street lights.
Once upon a time, I used to go for long walks at night. Getting out, breathing fresh air, feeling the wind against my skin reminded me that I was real, that there was a specific space where the world ended and I began.
But now I have a family to look after and the luxury of running away from my world, even just a few blocks, is no longer an option. Maybe that’s a bonus.
Times like these, I feel like a tiny molecule under a microscope. I have never done well being observed and it’s these memories that return.
The judgements of others who do not understand, who do not know me, edged into black and white. Words that describe someone pretending to be sick when they are not.
It is this thought that finally makes me smile. If only they knew. I have spent my life trying to explain, attempting to communicate what life is really like when chronic illness takes hold of your plans like a rabig dog and shakes it until bits tear off and nothing but a ruined rag is left. It isn’t fun. It isn’t pretty. It isn’t easy. It isn’t path anyone would willingly choose.
But I will not let it define me. I get up. I go on.
I still feel like I am just pretending to be an adult. Pretending to be real. I quite often still feel insubstantial, as if I am just a construct made by my imagination.
I don’t pretend to be sick.
Every day, I pretend to be well.
I smile, I take deep breaths, I carefully hide the few visible tenets of chronic illness. I act normally with the only chink in my armor being the time I spend on bathroom floors, still like a corpse, gently stretching and pulling in a brave attempt to get bones to go somewhat back into the homes they have creeped out of.
I feel dizzy. Clammy. I throw up. Pain and nausea goes hand in hand.
I rinse my face with cold water. Wash my hands. Look in the mirror and tidy my hair into place. Put the smile back on my face.
For a long time, I somewhat resentfully felt that smile was for the benefit of others. I now know better. It’s a selfish smile. It’s my armor. It’s the only thing I have that knits my world together. Without it, I would be like the astroid belt, spread thin and wide. But with it, I am like Ceres, rock and ice rounded by my own gravity. I have substance, weight, borders and boundaries.
It is my composure that reminds me that I am not a million tiny pieces that needs to be assembled like a complex puzzle. I am done. I am as complete as I am ever going to be. Don’t look inward, look out at the big wide world out there waiting.
I don’t want to talk about my health. My symptoms. How well or not well I may be doing. It’s one of the reasons why I hate doctor’s appointments. It makes me look inward and there is nothing new there. I do the best I can. I do as much as I can. That has to be enough.
All I want is the chance to always look outward. Build a life. Build relationships. Help someone else.
Get up. Go on.
Forget about molecules and atoms.
Life isn’t a chore, it isn’t a burden. It doesn’t have to be. There is more to life.
Smiles are wonderful things. Sometimes they start as a formality but most days by the end of the day, they’ve crawled under my skin and have become a part of who I am.
Sunny disposition? I wish. I try.
Title is a quote from Margaret Atwood’s The Handmaid’s Tale: There is more than one kind of freedom, said Aunt Lydia. Freedom to and freedom from. In the days of anarchy, it was freedom to. Now you are being given freedom from. Don’t underrate it.”