104 years ago, on April 14th 1912, a massive ship was gliding through the icy Atlantic waters beneath an inky sky ignited with thousands of stars on its way to New York. Deep within the ship’s massive bulk, champagne flowed in the dining room for the first class and music bubbled up from the ballroom. Passengers strolled around the grand decks watching their breath puff out in delicious white vapours against the darkness. The ocean parted at the bow, slapping melodiously against the ship’s side as it steamed forward. No one saw the massive iceberg destined to rip apart the hull and send the mighty ship into the bowels of the glacial waters until it was too late – and then, it was only the tip that was seen. There were not enough lifeboats on board and more than half of the passengers succumbed to the bitter waters.
Like an iceberg, RA reveals only the tip of its tremendous weight. Far beneath the surface is where the real disaster takes place. We might glimpse a tip of the iceberg in a person whose eyes don’t seem as bright, in their sluggish heavy movements, as if they are hauling an invisible weight, and of course they are – buried deep beneath the surface the waves of inflammation are frothing, threatening to capsize their vessel and dash them onto the rocks. It is there where the real damage splashes up over the coaming, breaking apart the hull. RA can make one feel like they’re on a sinking ship. It’s a challenge to stay above water and find the lifeboat to help pluck us out of the red sea of our disease.
So how do we find our lifeboat? In most cases, we must construct our own. We construct it using our own experience and the strategies we’ve learned to alleviate and suppress the squall of RA. Our diversions, our knowledge, our friends, our family, even the tiny little luxuries that remind us life is worth fighting for are solid materials to construct our lifeboat. We build it from the things that give us strength when we feel we are sinking. Everyone’s lifeboat will be different, designed to meet their own individual needs – and they will be constructed at different times in a person’s life. Sometimes we have to capsize, learn to swim, and patiently wait for something to lift us out of the water.
I had the opportunity to reconstruct the Titanic’s fateful night on stage in the Canadian premiere of Luke Yankee’s play “The Last Lifeboat” – but the sinking of the Titanic is only half the story. The other half centres on White Star Line owner Bruce Ismay and his ill-fated decision to step into the last lifeboat and save himself instead of going down with the ship. He was victimized for this decision, but would we have done the same? The story of the Titanic’s sinking is a story of resilience, courage, survival and selfishness – it is the story of living with RA. Back then, that kind of selfishness was viewed as a weakness. Today that little bit of selfishness is sometimes necessary to survive the tempest of disease. In the seas of chronic illness, we are not judged for taking cover in our own lifeboats, for taking time to save ourselves and salvage the wreckage from RA.
The Titanic was isolated the night it was swallowed up by the glacial Atlantic, but sufferers of RA do not sail alone. Today, there are more than enough lifeboats to help us get to shore while ours are under construction – advances in modern medicine, research, a new class of health care providers, and the remarkable connections to groups and individuals, online and within our communities, who are always navigating the waters of RA.
To all the courageous men and women who sail the tempestuous seas of arthritis, I wish you “fair winds and following seas”.
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J.G. Chayko is a writer, actress, and international arthritis advocate who’s been involved in theatre for more than 30 years and has published poetry, fiction, and creative non-fiction.
Great post! I do feel sometimes like I’m treading water. Sometimes the current goes with me, sometimes it dashes me against the rocks. But the important thing is to keep on swimming, keep on paddling, even if at times all you can do is float and let the winds carry you, hopefully not asunder. Stay well.
I’m treading through a bit of a flare right now, but hope to feel land beneath my feet very soon. I will not let the winds carry me too far and I hope you don’t have to tread water for long. Wishing you well. X