I was watching the marsh fly by the car window as the Georgia sunrise and all its beauty stared back at me. A friend was driving me north to the Charleston, S.C., airport to catch a flight to Los Angeles. Driving myself has become a bit of a thing of the past.
Sometimes I can imagine myself as one of those golden-colored marsh reeds shimmering in the sun, forever clinging to the mud, waiting for the ever-changing tides that dictate my life. Digging my roots further and further into the bog, so that even the strongest hurricane cannot pull my feet from where I am planted. Roots deep, grounded and waiting for the sun, only to wilt once the sun actually hits me.
A Georgia sunrise is the beginning of an entire life cycle that, as the moon replaces it in the evening, so too do the shadows. We all have a place and a time. Like stars we can burn fast and bright or long and steady. But all stars eventually burn out.
I am headed for my annual trip to a music conference in California (NAMM), plus I needed to check on my house in Santa Cruz, where there had been severe flooding and mud slides recently. There are times where I am super excited to visit old friends, and other times when it can give me enough anxiety to cancel it altogether.
The real problem, though, is that for the first time, I don’t really feel like I belong there. I already am tired and I haven’t even made it to the airport. I have one other reason, also dreaded, for going on this trip, which is that my doctor is there. Having been to urgent care three times and the ER twice since moving to Savannah, I think it’s time to pull some blood, refill some meds and prepare myself for a highly probable, stern talking-to regarding lifestyle choices.
I wouldn’t change my life for the world, but if I were forced to, I would change how others perceive my illness.
I finally made it through airport security, hobbling three-legged with my redwood cane, at a pace that only one with a bad hip could be comfortable. I feel the impatience of those in line behind me, but quite honestly I stopped caring long ago. These people do not know me and they do not know how hard traveling has become. In fact, sometimes I purposely move even slower. Small revenge.
I wouldn’t change my life for the world, but if my life depended on choosing one thing to change, I would give others the opportunity to see me for who I am on the inside. All too often they see the cane or the wheelchair and they assume they know me. They assume I am weak, and that I cannot take care of myself. With three bags and a carry-on, I keep thinking to myself, “I’ve got this.”
“Do you need help
“You know, actually I do. Thank you, love.”
Typically these music conferences are five days long and the “old me” would have ran the entire marathon in high heels until my feet were swollen and my voice was gone. I was lucky if I had 12 hours of sleep total, and many a Los Angeles sunrise was viewed.
But each year it took more and more out of me. I stayed in the sun too long. I couldn’t swallow foods. Later, liquids would prove a challenge. It would take me two, if not three, weeks to fully recover from these events, which were my passion. I lived for them. At the time I kept telling myself “You’re overdoing it; you just need to take it easy.” I had no idea lupus was inflaming my feet and esophagus and that the sun, which I loved so dearly, was killing me.
So, the “me of today” went to the music conference for two days and made it to sleep by midnight one night, and 9:30 p.m. the other. I didn’t miss the LA sunrise. The thing I missed most was my healing Georgia sunrise. Unfortunately, only two days later I was exhausted. My body is in more pain than I’ve felt in months, and all I can think about is my Georgia sunrise.
Being a single mom who prides herself on being independent, the hardest thing for me to accept with Lupus, is help.
Again and again I am reminded of those beautiful golden Georgia reeds back home. They require the help of the mud, the sun, the rain and the tide. If even one of those things is lacking, the reeds aren’t their strongest. As with lupus, we require help from multiple facets. Sometimes it isn’t asking for help; it’s just learning to accept it when it’s offered.
I’ve learned a lot on this trip about who I am, and who I need to be to survive. I am digging these roots deep, and I will hang on for dear life, regardless of the lupus hurricane that is raging in and all around me.
I am humbled and in awe of each Georgia sunrise I am able to see. And, if only for a minute, I can imagine that I am that reed. Golden in color and stronger than the fiercest hurricane-strength wind. I am healing. I am a warrior.
All photos: Bridget Gardiner.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.