Nothing prepares you for a life-threatening health diagnosis, especially at age 30. First came the fatigue, followed by hair loss, a full body rash, and a hundred pound weight gain. Then the joints locked up and the swelling began. It got so bad she could barely open her eyes.
Dana Jackson is among the 1.5 million people in the U.S. battling Lupus. Her illness took away her glamorous and glitzy life in the music industry and replaced it with a lonely new one, that of a recluse. At her lowest point she looked down from her 14th floor apartment and considered letting go.
And then she looked up.
Suddenly, faith meant something different and she knew this crossroads, however painful, had a purpose. She made a choice to release the person she was and embrace the one she became — not the one with Lupus, but the one who found deeper meaning as a result. The possessions and people that used to matter no longer did. Her perspective shifted and Dana realized that up until her diagnosis she had been wearing a mask and not living an authentic life.
It was because of this epiphany that Dana created Beneath Your Mask, a line of skin care products for those with health challenges involving the immune system such as Lupus, cancer, and other autoimmune diseases. These individuals have difficulty with the detoxification system in their bodies and sometimes struggle with mainstream products that contain preservatives or other synthetic ingredients. She also developed a hair and scalp serum to help those who’ve experienced hair loss due to illness, hormonal changes or age.
Her story resonated with me on a personal level. May is Lupus Awareness Month, along with a couple of other lesser known auto-immune diseases such as Guillain-Barre Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), the latter of which I have.
I was in 3rd grade and it was Easter morning. I excitedly leapt out of bed to find the eggs and basket, but when my feet hit the floor my legs buckled and I collapsed. There was no pain. In fact, there was no sensation at all, just an inability to move. The doctors were flummoxed and had no idea what was wrong.
But just as mysteriously as the paralysis occurred, it also disappeared. Three days later I was back to my normal self, running, playing, climbing trees and tearing up the neighborhood on my bike. The crutches I had briefly relied on were the only reminder that something had been amiss.
My parents chalked it up to a fluke. That is, until it came back years later in High School. I was 14 and sitting in class. The teacher asked a question and I attempted to raise my left hand, but I could barely lift my arm from the desk. Inexplicably, my right arm was fine. After a series of tests, including a spinal tap, MRI, CT scans and multiple electromyograms (EMG’s), a neurologist diagnosed me with Guillain-Barre Syndrome and put me on steroids.
It turned out to be the wrong diagnosis and the steroids made my condition worse. I stopped playing the cello and eventually gave up basketball too. I hid the condition from most people because I was a teenager and back then appearances were everything. I was also an only-child and didn’t want to disappoint my parents. Since they didn’t have any “backup kids” I put a lot of pressure on myself to be perfect. I felt guilty for somehow being broken.
Dana’s description of wearing a mask very much applied to me during those years, but it also made me more sensitive to others. I started noticing people on the fringe, those that didn’t quite fit in, and began volunteering at a youth hotline. I also developed a passion for photography and video production and would spend countless hours alone in the editing studio or darkroom making videos and prints. Creativity and art played a big role in helping me channel things outside my control, like whatever was happening with my body.
For the remainder of High School I was in and out of the hospital. My mom would leave work and drive me to appointments. I knew it wasn’t easy on her either, but she never showed it. Her eternal optimism of seeing the good in everything got me through. I confided in a few close friends, but no one, myself included, really understood what was going on.
The symptoms of my condition would ebb and flow. One moment I’d be fine and the next I’d be struggling to tie shoes or comb my hair. This temporary paralysis would last a few days, a week, or up to a month, but then it would eventually fade away and go into remission. The time between relapses could be one year or five. There were no warnings or detectable triggers. It just happened when it happened.
I saw multiple neurologists and they ruled out MS, ALS, and even Lyme disease, so I considered myself lucky. It was manageable and I got used to living with it, whatever “it” was. I went almost an entire decade without incident until one night as I was leaving a fancy media event I became wobbly on the sidewalk and almost fell. I was completely sober but everyone assumed I was intoxicated. It was embarrassing and scary.
The following week I went to another neurologist, a new one, and that’s when I was finally diagnosed with CIDP. I was 40 years old. Fortunately, I have a less severe case of it (which is why it look so long to pinpoint) so I’ve lived a normal life, and will likely continue to do so. On the outside you’d never know I have this condition. Only a trained eye can detect the subtle signs. It’s not something I readily share either because it doesn’t define me, nor will I allow myself to be a victim.
I’ve been presented with various treatment options, but since my symptoms rarely manifest I’ve chosen to hold off. Recalling my negative reaction to the steroids no doubt plays a role in this decision, but I’ve also learned that maintaining a healthy lifestyle is sometimes the best medicine, whether you have a chronic illness or not. What you eat, what you don’t drink, getting enough sleep, consistent exercise, even meditation and spirituality, it all matters, especially as we age. Most recently I’ve been paying closer attention to the products I use, seeking natural alternatives whenever possible.
This is why Dana’s story connected with me. I am not someone with an incurable condition. I am someone despite of it. Her journey, and mine, are gentle reminders that life, despite setbacks and challenges, is worth giving your all. You never know what someone else is experiencing because so many masks are invisible. But whatever yours might be, or perhaps once was, discovering the individual beneath it and allowing vulnerability is one of the bravest things you can do. And strong.