It was time for him to go. And as I tried to stand up with the poise and strength of Bette Davis or Beyoncé, my balance gave way. For 24 years I’ve had ME/CFS (formerly known as “chronic fatigue syndrome”), a disabling neuro-immune illness similar in many ways to multiple sclerosis. My legs were more numb than usual, and the man I’d broken up with after he “postponed” our wedding had just graciously prevented me from a dangerous face-plant.
Few things are more humiliating than feeling indebted to someone who has broken your heart.
And when you’re disabled, you feel indebted every day, making dating that much harder than it is for the average person. Because no matter how fiercely autonomous and intelligent you are, you’re starting each relationship as the one who needs help doing otherwise simple tasks, such as walking downstairs or driving. Even with healthy self-esteem, it’s hard not to feel intensively vulnerable.
Five days after Trent asked me to marry him, a routine check-up unearthed a brain tumor behind his left ear. A longtime professor, Trent is deeply intelligent and tenacious. We were in love and determined to remain upbeat about his prospects. I took care of him over six months, as we assembled his surgical team, spent a week in the hospital as he underwent and recovered from the successful but complicated brain surgery, and then as he went through months of physical therapy. I was his main source of emotional support, but it took a huge toll on my health.
Even without the added stress of a loved one’s serious illness, struggling with chronic fatigue syndrome makes me often feel as if I have a powerful flu. I deal with constant temperature fluctuations; extreme sensitivity to light and sound; dangerously low blood pressure; and fatigue so powerful it feels like a Buick is sitting on my chest. Through it all, I rock my burgundy lipstick; I’m able to walk a mile to a mile and a half each day with crutches; and I maintain close relationships with family, friends and colleagues. More importantly, have defied the predictions of several doctors who declared decades ago I’d never work again. I give literary readings several times a year and am diligently working on the manuscript for my second book.
Out of the 7 billion lives on the planet, I’m profoundly grateful I have mine. But that doesn’t change the fact I’m unable to stay upright more than a few hours on a good day; for the past several years, I have needed to be wheeled through airports (if you think air travel is a nightmare, try doing it in a wheelchair). And when I’m on a plane or bus, I have to wear a surgical mask because my immune system is so compromised. Twice in recent years, someone else’s cold became my pneumonia.
Because I loved Trent, I was the right person to be his caretaker. I was glad to support him. I wish I could have filled the role without subsequently experiencing a massive physical setback, though. Because then he needed to take care of me.
When we might have been enjoying our engagement, we were weathering near-constant health crises. Our relationship became a constant cycle of doctor appointments and medical tests — and the stress eroded the joy we once found in each other. And because everyone asks: Yes, of course we had sex. All the time. Even at my sickest, I’ve been sexually active. I’m disabled, not dead.
There’s a reason for the adage: “If you have your health, you have everything.” So where does this leave me as I start dating again?
I remain optimistic. Each relationship I’m in is affected by my health. For instance: Am I strong enough to go to the movies tonight, or should we stay in and watch Netflix? Can we eat breakfast with the curtains open, or are my eyes too light-sensitive this morning? For a relationship to be successful, the person I’m with has to be empathetic and understand that some things are beyond my physical control. Yet so many of these relationships have profoundly enriched my life. I’d be foolish to waste the rest of my life convinced that I won’t find love.
Trent and I will never know who we might have been if a few cells hadn’t mutated and formed his brain tumor. Or what our relationship would have become if I were healthy. But unlike getting up off the living room carpet, this time I don’t need his help.
At least his gray couches are gone.