“You’re fine,” were the words I heard emerging from smiling lips and sparkling eyes.
A roller coaster of relief, disbelief, confirmation, belief, relief, elation, relief and a resounding “WHAT?” whirled through my mind in about a nanosecond. (Did I mention the relief?) I had been feeling fine. My gut instinct was that I couldn’t possibly be sick again. But I had been called to meet my doctors for a reason. Someone down the line of my medical team saw something questionable in my recent lab results. Even though I was asked not to worry, I couldn’t help but presume that trouble was brewing. The mudslide of my life with chronic illness was about to cover me in sludge once again.
Instead, I was told I had achieved a true remission for the first time since I was diagnosed with lupus. I can still hear those sweet words chiming like church bells: “You are fine. There is no evidence of illness in your body.”
You get used to dragging your butt around in extreme fatigue, having a schedule ruled by medical and paramedical appointments. You get used to hearing bad news and swatting it away like a whining mosquito, knowing it will return and you will swat it away again. You just keep hoping you’ll swat before it bites you too hard.
Diagnosed at 21, I had spent the last 25 years of my life fighting illness. Though I often found myself in grumbling mode, I became adept at fighting while leading what I thought to be a normal, fulfilling life. In fact, I became so good at it that the dream of being healthy faded away. I believed I was just fine with the balance I had created. I worked, I played, I slept. I slept a lot. Why ask for more? I had lost any perspective of what “more” would even look like.
Twenty years after my diagnosis, I was getting weaker with each year, less productive and grouchier. The grumbling rarely let up. I was beginning to think that the treatments I took for this chronic inflammatory illness were killing me from the toes up. Debilitating lupus symptoms like fatigue, arthritis and kidney inflammation were troubling. The side effects of the treatments were debilitating. I presented as the girl with the smile on her face even though deep down I was bone-tired.
After many failed treatment regimens, I had virtually exhausted my options. My medical team decided it was time to risk a different drug therapy. Although not approved for lupus, evidence showed that it was effective in a subset of cases. I mustered the energy to try one more medication, but if it didn’t work, I was ready to throw in the towel.
Leonard Cohen writes, “Ring the bells that still can ring/Forget your perfect offering/There is a crack in everything/That’s how the light gets in”
Time and again, Mr. Cohen’s words touch my heart. After decades of searching, we had finally, thankfully, found a crack. Within weeks, this magical elixir set me on the path to remission.
As human beings, we all experience situations in which we have to adapt, physically, socially or environmentally. It amazes me to know that we can get used to just about anything and how quickly we forget about the beloved “old ways” of our past. I accepted my symptoms and the indescribable fatigue as status quo. They were rarely challenged, perhaps because I was just too darn tired to challenge them. It was only in health that I came to realize how sick I was and how compromised a life I had lived.
As I settle into my new-found health, lupus is certainly not missed. Every healthful day is a gift. But to my surprise, and at times chagrin, the adaptation process has not been as easy as one would anticipate. Just go for it and live, make up for lost time – right?
I discovered that a constant fear of falling ill was paralyzing me. I was unable to make plans, long- or short-term, for fear of disappointing people – myself included. I was afraid to travel, afraid to commit to work contracts, afraid of getting close to people and afraid of things in my environment that I couldn’t control.
Most striking, the fear of the illness devoured my self-confidence. The only thing I felt confident about was my ability to fight. When I became well and didn’t have to fight, I was left with a boatload of unwarranted fear.
So I am now in my own rehab for the chronically well, challenging myself to think like a healthy person. This entails leaving the debilitating fear of chronic illness behind, a fear that was like a puppeteer pulling my marionette strings, governing my every move.
Because the risk of recurrence is ever-present, my magic elixir needs some help to keep the lupus quiet. I draw from many super-powers, from training regularly at the gym to build up strength, eating healthfully, surrounding myself with goodhearted, warm-my-soul people, being involved in work and activities that fill me with joy, being useful to society, laughing out loud (no abbreviated ‘lol’ing), doing lots of yoga, and managing stress and fear. Yes, all the cliché fixes that you’ll find in a self-help book are working for me. I have marked my first anniversary of being completely off medications, what is called a true remission. It was a day of arrival, of celebration, rivalling that of my actual birthday. I am embarking on a new life.
It’s getting brighter every day.
To anyone living with a chronic illness, please hold on. Keep ringing the bell. When you least expect it, you will find a crack. The light will shine in.
Wendy Singer lives in Montreal.