My priorities shifted again as I balanced what had become a highly demanding career with my role as a mother, an advocate, and a partner to my husband. As the feeling of hopelessness began, I had to push it aside. I became the Chair of the NBIA Disorders Association, where I combined the talents and skills I’d learned as a Vanguard professional along with my uncontrollable desire to help my daughter, and put them to work so that I could make a difference for Dylan and all those affected by an NBIA disorder. I was so focused on my daughter and maintaining my professional momentum that I was distracted from what was going on with my own health. Something was very, very wrong.
Change is rarely easy, but I knew now was the time to take the leap into a formal leadership role and also prioritize taking care of my health. While it was a very difficult decision to step away from the Relationship Manager role I loved, I knew the demanding travel schedule was putting a strain on my family and on my body. I’d been supported in such incredible ways during my journey, and knew my path would one day lead me into leadership. I applied for, and was offered, the role of leading a team of high-net-worth Sales Consultants in our Retail division.
As I prepared to transition into my new role, I took some time off for the holidays. Each year we visit my dad where he lives on a mountain and enjoy a beautiful white Christmas. I had suffered from increasingly challenging elevation sickness (or so I thought), which had become progressively worse each year. This time it was so bad, I could not stop from passing out over and over again. Worried, my husband packed us up and got us off the mountain and I immediately began to feel normal (or as normal as I can be). Although feeling better, a persistent cough kept me from sleeping. I went to an urgent care doctor, who thankfully paused to ask questions, learned about my extensive travel habits, and ordered an x-ray. Although he thought it was likely pneumonia, he directed me to the ER to rule out a pulmonary embolism.
Five days later, I went home with a diagnosis that scared the hell out of me (what are the odds that both Dylan and I have rare diseases?) – lymphangioleiomyomatosis (LAM), an extremely rare lung disease that affects approximately 3,000 women around the world. This disease causes my lungs to be riddled with “innumerable” cysts which obstruct my airways and make it impossible to breathe normally. I was told I would need supplemental oxygen 24/7. I was told I wouldn’t be able to travel by plane. I was told that a double lung transplant was inevitable, and soon. I was overwhelmed.