We Spoonies come in all shapes and sizes. You knew that already! But we’ve also noticed some real similarities among our guests. It’s amazing how often we welcome formerly-Type A personalities to the podcast. And this month’s guests also share a pattern we’ve noted … athletes, affected by chronic disease.
Dr. Karin Hehenberger was on track to become a pro tennis player. Morgan Greene was a gym bunny, in marathon training mode. Serious diagnoses majorly derailed both women. Check out their inspiring stories …
Karin Hehenberger’s diagnosis of Type 1 diabetes came at age 16, when she was a teenager in Sweden and working her way up to the pro tennis ranks. She dealt with the diagnosis by trying to ignore it. “I was someone who never really needed to worry, except for my own performance that I could control,” she explains. “And here, it was something that I couldn’t control. And I felt totally lost. Because as someone who was controlling everything and doing it pretty well, I felt like I had lost my whole bearing in life.”
While she realized tennis was not to be her future, and she switched her career goals to medicine, she continued to hide her condition for 20 years. She became an MD, and moved to Harvard as a post-doctoral medical PhD student, all the while taking enormous risks with her diabetes in order to keep her secret. Later, working in health positions on Wall Street and in the corporate world, she would divulge her condition — but at that point, it was too late. She needed a kidney transplant, and opted for a simultaneous pancreas transplant in order to cure the diabetes she had been unable to maintain successfully.
But the transplants were an impetus for a lightbulb moment … and resulted in the creation of Karin’s company, Lyfebulb — a patient engagement platform, whose mission is to reduce the burden of living with chronic disease through the power of the patient.
“Patients can be innovators,” she says of the Lyfebulb community. “The daily burden, no one knows that better than those who live with the disease on a daily basis.
“Patients need patients. I never connected with another person. And I think if I had, I would have been a better patient. Instead, I did deep research and tried to figure it out myself with experts — who were not patients. But if I had connected with another patient, maybe I would have felt that it wasn’t so bad. Diabetes is just a disease, like MS or cancer. We are all affected by something.”
It was in the gym that Morgan Greene first realized something was off. She looked in the mirror and the image was fuzzy. She remembers thinking, “Maybe I’m just tired today. Overdid it.”
But not long after running a 5k, and experiencing occasional periods of blurriness and really bad headaches, she woke up, “basically looking like I had had a stroke. The entire left side of my face wasn’t moving. It was very scary.” Several months later, she was a 20-something with a diagnosis of myasthenia gravis (MG) — a rare, autoimmune neuromuscular junction disorder, characterized by weakness and rapid fatigue of any of the muscles under your voluntary control. “So that’s … speaking, swallowing, breathing, arm/leg motion, the ability to hold up your neck, smiling, eyelids; a lot of people with MG will have droopy eyelids or double vision.”
Four years later, after numerous treatments, Morgan looks back at the very rough road to where she is today … working full-time; “moving my body about 20 to 30 minutes a day, whatever that looks like”; and focusing on healing holistically.
Her blog, Is, Was, Will Be (notice how her initials match her diagnosis of MG, too?!) pushes the positives, in the best possible ways.
“My MG diagnosis illuminated for me my lack of self-love. Because I was so hard on myself. And it makes you question … if you love yourself, why are you so hard on yourself for something that’s beyond your control? You didn’t cause this illness. And so that really prompted me to do things like journaling and self-reflection, and just thinking about … okay, what can you do to be your best self? And, even if it doesn’t change, are you really going to hate yourself for the rest of your life?”
Like so many of our guests, Morgan’s life was turned upside-down. But she is one of the happiest people we’ve met. Her secret? “It’s not gonna look the same. But you can still … what I like to say … live your illest life. Your old self is kind of dead, but you can still have a rebirth and reframe what it is that your life is going to look like with a chronic illness.”