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?
Jenn says
I had this conversation with my therapist prior to my kidney transplant in November of 2015. I was so sure everything was going to work out that I really focused on who I was going to be as a healthy person. Sadly for me, things didn’t go all that well, and even today, I’m still dealing with issues and back on dialysis. But even on those rare, good days in-between, I can be full of hope and goal-oriented. I can come up with all of these plans and things to do to get excited about. The hard thing is waking up the next day and feeling awful again and having all of those plans back-burnered. And it’s a constant cycle. I vacillate between giving up and charging forward weekly, but there’s still something deep inside of me that’s waiting for the time when I can be in the healthy world again.
Rosalind says
It’s so understandable that you’d feel this way, waiting. Are you ok with the vacillating – is it the best you can do? Does the waiting get in your way?
Alyson Knop says
I tell people that if I handled my bank account the way I handle a day of more energy, I’d have filed for Chapter 11 long ago. I get so excited to feel a bit more “normal” that I take on far too much. And after decades of this, I still haven’t learned, in part because “activity bingeing” feels so good that sometimes feeling awful afterwards is worth it.
As for changing one’s sense of self and explaining oneself to others, I’ve had this more in relation to moving, about 20 years ago, from one Kingdom of the Sick (joints flaring badly from RA such that I needed to use a wheelchair) to another (artificial joints fine, and I can walk, but I feel continuously like I’ve lost a lot of blood and have mono). People seeing me now able to move more easily and looking stronger assume I’m “fine,” and their expectations of me usually overwhelm me because they’re far beyond what I can do. When I was wheelchair-ridden and in lots of pain, I found people were always surprised by how much I could accomplish–their expectations were lower. But it was actually easier to accomplish things with a lot of pain but minimal fatigue and brain-fog than it is now. That paradox is difficult to handle.
Rosalind Joffe says
Beautifully put. The paradox — of living, isn’t it? Some things just don’t make ‘sense’.