When your mom is chronically sick, the world feels polluted. It’s like living in a contaminated ecosystem. Things are just wrong and you know it and you walk through life with panic over one shoulder and grief over the other. You strain to outrun them — by working late, falling hard in love, volunteering with the needy — but the truth of the sickness is always there, dragging everywhere with you, more menacing and clingy than your shadow.
My mom has been sick for a long, long time. The designations have changed over the decades. It started as The Accident, also known as The Head Injury, in 1975. Later she was pegged with Lyme’s Disease, Fibromyalgia, and other ailments. Different doctors came up with different names but an uneasy consensus was reached, and the final grand verdict was Chronic Fatigue and Immune Dysfunction Syndrome (affectionately, CFIDS). There’ve been many satellite afflictions, too. But the twin kings, the ones outlasting the seep of time, are The Accident and Chronic Fatigue.
Thirty-seven years later, I can say that I’ve seen my mom change in two big ways. One, her body and ego have become smaller. Two, her spirit has become brighter. When illness or pain is chronic, an intense wearing down occurs: inevitably of the body, but also usually of the will, the ego. Even when the person is a scrappy fighter, chronic pain will smooth her down like a rock worn edgeless by the rolling of a river whirlpool. (And then there’s the subject of medications, which do their own sinister sort of wearing down — but that’s for a different page.)
What interests me most is this: the rubbing action that sandpapers the physical form and the personal pride can also, eventually, start to polish the soul. The person’s spirit can become burnished, rubbed to a luster, and she can start to shine. She can actually illuminate a room, or another person’s heart, or a lineage of offspring. She can become a torch — lit up from the tar and fear and agony of the affliction. I think it’s like an ordinary Joe finding God on his deathbed and shocking the family with his luminosity. It’s like coal turning into a diamond.
For the people who surround and cherish the chronically ill person (bringing it back to me) it’s a whole lot harder to become a diamond. Why is that? Am I just not soaked enough in tar, myself, to be flammable? Do I need more coal? Do I need to marinate in a deeper kind of pain before I flip through the door to angelic trans-pain acceptance?
I should clarify that my mom isn’t quite a glowing angel; she isn’t radiant with full-time acceptance, but she does have a miraculous capacity for tolerance of what most folks could never bear. Right now as I’m writing, she is dealing with:
1. The usual head pain.
2. The usual, bizarre, fluctuating, surprise symptoms of Chronic Fatigue.
3. Nearly constant dizziness, which she’s had for 3 months, ever since the end of her valiant fight with shingles.
4. Labored breathing, also for 3 months.
5. A week-old vision impairment causing her to see a black circle in the middle of her visual field.
6. Fatigue and confusion from a battery of doctor visits and medical tests.
How would you feel in that body? After three months of dizziness and shortness of breath? Plus 37 years of daily head pain? I’d probably have entertained several ways to end my life. And she’s still alive, with no plans otherwise.
She’s a hero and a wonder, and I do not understand how she maintains any flicker of brightness. Of course, as with any human, there are laces of shadows, riddles of hooks in her story. But her brightness is there for me. And it’s there for her sons and granddaughters. It comes to us as a glorious cheerleading kind of love, a love that celebrates and praises us, thinks we are all amazingly smart and brave and creative and funny and just the bee’s knees.
What did I do to deserve such love?
When your mother is sick, something is fundamentally wrong with the world. You don’t want to live in that world unless you can radically change it. I want my mom to feel better. I just, simply, bottom line, want her to feel better. I have desperately wanted that for 37 years. This unfulfilled and burning desire — is it the coal for my diamond? For her sake, I’d love to become a diamond. To be that sparkly and brilliant and pure. And my mom gives me a miraculous gift: she believes I already am.