It was a beautiful, hot August day in 1979, when I lost vision in one eye and couldn’t lift my body. After several years of vague neurological symptoms, I had a diagnosis: Multiple Sclerosis. I was lucky. It took a few months but I got my sight and energy back fully and could return to work and life as I’d known it. Or so I thought.
Six months later, the symptoms were back, not as severe as before but enough to make life difficult. Then magically, they withdrew, and I thought I could slip back into my ‘normal’ / healthy life.
Actually, I never returned to that life or that person again. Over 36 years, the periodic MS flares,the string of new diseases and syndromes that crept up, became a relapsing and remitting cycle of illness in my life. The slide down into “The Kingdom of the Sick”, as writer Laurie Edwards calls it, is one kind of journey. But what happens — who do you become — when you return to the kingdom of the well?
I’m grateful for the times of good health in between the the illness. It can bring me to tears of joy. Don’t be fooled though. Like every seismic shift, it carries it’s own set of baggage with it.
Most of us fight going from being that active, engaged person to someone whose body forces her to withdraw, piece by piece, from the activities of daily living that healthy people take for granted. Maybe you ignore or feel confused by the changes. Eventually when you can’t deny that the health you relied on is no longer there, you feel betrayed. There’s a deep rooted anger. Finding a way to make peace with this place is your best hope. If you’re lucky, you arrive there eventually.
But what happens when the landscape changes and your health is better, maybe even well? Each time I experience this shift, I struggle to adjust. How do you maintain equilibrium when an unruly roller coaster throws you out of balance?
When my client asked, “Who do I become now that I’m getting healthier?, I wasn’t surprised by her worry. She said, “Over the past 8 years, I had to become that person I never wanted to be. I used to have a big life, working and playing hard. Now, when I’m not working, I’m a total couch potato and everyone grew used to me this way. Now, the meds are working and I can see I’m getting stronger and healthier. But what happens when I’m back to normal? My family and friends expect me to jump back into life the way it was — working full time and always saying yes. How will I know who I am?”
When you’ve spent years accommodating to the demands of a chronically ill body or mind, that becomes your norm. But, when you’re no longer focused on debilitating symptoms,you wonder: What’s realistic now? Who do I want to be? How do I want to be with others?
It’s tough to explain yourself to others when the definitions you lived by no longer fit. It can be even more difficult to make the internal adjustments that will allow you to stay in balance, stay resilient and be in the world of the healthy again.
Is this your experience? How do you become? What helps you to adjust between the Kingdom of the Sick and the Well? What gets in the way?