Someone recently said to me, regarding chronic illness, “You just don’t have a clue.”
Oh, my. I wonder if that person has any idea how very, very wrong she is.
I’ve got clues. I’ve got knowledge. I’ve got memories seared into my brain no mother should ever have. I’ve endured a great deal of my own pain.
Yeah. I’ve got a clue.
I’ve seen my own child blue from lack of oxygen, his eyes wide with terror as less and less air passed between his lips and lungs. I’ve watched as my infant child’s enlarged heart turned him a pasty shade of gray, and listened to the nurse who told me about how his heart stopped, and he had to be bagged, and how the medical team climbed aboard the speeding stretcher that carried my tiny son, forcing him to breathe when he couldn’t do it himself.
I’ve made decisions no mother should have to make: about surgeries, and infusions, and injections, and medications, for children too young to understand or have any input on the lasting effects my choices may have on them.
I’ve seen my children, one by one, wheeled into an operating room, far more times than I can remember.
I’ve seen complications from those decisions: allergic reactions, respiratory distress, suture spits, granulomas, paralyzed vocal chords, rigors.
I’ve dealt with the traumatic, emotional aftermath of those necessities: psychiatric care, therapy, nightmares, sleepwalking, vomiting, tantrums, nights spent with a child so torn apart by life she could emit nothing more than a guttural, primal wailing at the thought of facing another day.
I’ve gone days with no sleep, in dirty clothes and ratty hair in cold, sterile hospital rooms, sleeping in a narrow hospital bed with my child.
I’ve got clues.
I’ve spent months after a stomach surgery feeding two of my children only liquids…..while feeding my other two children regular foods. Tell me that wouldn’t tear your heart out.
I’ve spent five years avoiding allergy triggers in foods: searching restaurant ingredients online, in stores, and carrying “safe” foods wherever we went.
I’ve spent hours of time locked in tiny square rooms with physicians, debating the pros and cons of more and more and more major medical decisions for my kids.
I’ve spent hours fighting with school personnel: begging, crying, insisting, stomping feet and threatening lawsuits to ensure the rights of my children.
And I’ve dealt with my own issues.
I’ve lived for over 20 years with migraines, sometimes so debilitating I can barely hold my eyes open, so excruciatingly painful I’ve blacked out, and a couple times even had seizures.
I have lung damage from asthma left untreated, and a quirky heart valve that has caused its own issues.
I live with a progressively deteriorating disease that some days flares so badly, I can barely stand, barely uncurl myself from my bed, in order to get through the day.
I am so sleep disordered, sometimes I go 2-3 days with only 20 minutes of sleep.
There are days I have pulled into a parking lot, in so much pain I can no longer think, just because I need a minute of silence to try to get myself back together before I can bear to drive again.
I’ve struggled with depression so deep, so black, I have wondered if I would ever claw my way back out of that bottomless pit.
And I’ve been so shaken by anxiety attacks I could no longer form lucid thoughts.
I’ve been traumatized and scarred, frightened and alone.
Yeah. I’ve got clues. I’ve got puzzle pieces. I’ve got loose screws.
I’ve got the whole shebang.
So perhaps, next time, before you presume to imagine I’M the one who doesn’t have a clue, you might want to yank that plank out of your own eye and look around you. There is more pain in the world than just your own.
But some of us prefer to fight against it, railing with all that is within us, refusing to give the pain the upper hand.
I absolutely refuse to set the example that disease rules our lives, that it has the power to change our dreams, that chronic illness is some Great Ruler, stealing from us our talents and abilities.
We may have to live with it, but I will not teach my children that their diseases are worth more than they are.
We are ALWAYS worth more than the disease.
Life is there for the taking, friends. Live your dreams. Face your fears. And never, NEVER, let the pain rule your life.
It’s YOUR life. It’s yours for the ruling.
Now that’s a clue worth holding onto.