A good story starts with an opener that sets the stage for what’s ahead, develops a plot that creates tension and builds the story line, and closes with the conflict or tension reduced and/or resolved. Each of us has a multitude of stories within us and often multiple stories about the same event. As you share your story, you might realize things that you hadn’t noticed before. You might experience the story becoming more expansive within you. You might find new meaning to the event.
And you might find that those who listen deeply will see you more clearly, get to know you a bit better, and perhaps even shift their perspective about the world around them.
In what follows, I am sharing just one of my stories about illness onset and it’s impact on my current work life.
I was 27 years old when I had my first urinary tract infection (UTI). Two months later, my left hand was numb. A few months after that, numbness methodically creeped through my body. I wondered, how can I look the same while my body is being inhabited by a creature from outer space? Soon after, I lost vision in one eye and was immobilized. I was grateful for the diagnosis, multiple sclerosis (MS). It was a tremendous relief to get confirmation that I wasn’t exaggerating what was going on and, most importantly, it had a name.
I had no idea what I didn’t know. In 1980, there was no effective MS treatment, little written about or for patients and few support resources for living with any chronic illness. Worse yet, people cringed when I said I had MS. It seemed like anyone with this disease ended up paralyzed and in a wheelchair.
I was lucky though. In time, I recovered my vision and my strength. I had no idea what was ahead so I shut the thoughts, the worry and nightmares, out of my consciousness. Denial was my coping tool and I believe it kept me alive. I went on with my life as it was. How could I know that this was just the first plunge in a lifelong roller coaster ride of living with chronic illnesses?
Forty + years later, I’ve had more experiences than I can count with new diseases and medical conditions. Each time there’s a new symptom and diagnosis, I face a blank canvas that eventually gets filled in. I’ve learned what it’s like to live with illness that brings life to a halt but doesn’t kill you. I know the isolation in this journey. I’ve been immobilized, ground down in pain. And I’ve experienced the joy of experiencing my body healing stronger than I had allowed myself to hope for. Sheer grit has allowed me to thrive, to find my passion. I found my calling as a coach, a guide to ‘fellow travelers’ who believe that they, too, have the capacity to develop the resources they need to continue living in this world as best they can.
Let’s face it. “It’s not a group you would ever choose to join… ”. Women, Work and Autoimmune Disease: Keep Working, Girlfriend!, p xi
Since March 2020, the number of folks who have entered this world has exploded. They’re called long haulers. The closest explanation of what this is like comes from Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, “… long COVID likely is the same as or very similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). …” Before the pandemic, the National Academy of Medicine estimated that as many as 2.5 million people in the US are living with ME/CFS”. This article in the journal Frontiers in Medicine says that the pandemic could well double that number in the next year.”
Sharing my story of my slide into this space invariably helps me see something new, something of value, in my experience. You might that you are already developing your own stories. Hopefully, this helps you make sense of or put a frame around your experience. And, when you listen deeply to someone else’s story, you validate their experience.
Recently, I was talking with a colleague who has been living with the effects of long haul Covid since early March 2020. One month after getting sick, she was rushed to the Emergency Room because her heart rate was dangerously high. They couldn’t find anything, told her she probably had sleep apnea and sent her home. She thought the doctors believed that she was a hypochondriac. She wondered if she was going crazy. In time, she found physicians who listened and validated her experience. I asked her to imagine that she was gazing down at herself when she left the Emergency Room that winter night. I asked her what message she would give to that self.
She thought for a while and then said softly, “Hold on tight. This is going to be a long, bumpy ride with no end in sight.”
Amen
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