I was 28 when I was diagnosed with multiple sclerosis (MS). I had a picture-perfect life. I was mother to a beautiful one-year-old baby girl, Emily. She had big blue eyes, strawberry blonde hair, and chubby cheeks. We lived in an adorable home in the redwood trees of Mill Valley, California with my successful husband whom I’d moved here from England with. We were minutes away from the Golden Gate Bridge and white sand beaches. I had spent the last few years working PR for film festivals, mixing with celebrities like Joan Rivers and Sharon Stone. Life was good. Until it wasn’t.
A few days after I’d given birth I was in the shower and couldn’t feel the temperature. I turned the tap to the hottest setting and saw steam, but couldn’t feel it. I turned it way down to where I knew the water would be freezing, and again I couldn’t feel the temperature. I brushed it off and figured it was due to the fast and furious two-hour natural birth of my daughter. My childbirth doctor had known it was going to be fast, something to do with the position of my pelvis. He explained that due to how my body was shaped my baby would fly out. I was instructed to have my bag packed and his number on speed dial weeks before she was due.
Emily was born on September 5, 2000. Almost a year later, in August 2001, I’d taken her in a baby backpack on a hike on Mt. Tamalpais. We’d had a wonderful day enjoying sweeping vistas of the bay in the company of a friend. But that evening I was still hot and sweating from the exercise and couldn’t cool down. I had a cold shower, put a cold wet cloth on my neck, but nothing helped. I also had a weird tingle that went down my spine and into my legs when I brought my chin to my chest. I knew something was wrong but didn’t know what.
Thankfully, the next day I’d cooled down. However, I still had the tingling in my spine when I stretched my neck. To make matters worse, my right hand and arm had gone limp and numb and I couldn’t hold Emily safely, or even hold a pen or spoon. I thought maybe I’d pinched a nerve while carrying Emily on the hike, so I made an appointment with a chiropractor. The chiropractor adjusted my back, but it didn’t help. I went again the next day and she told me to go to the emergency room. She later said that she knew I had MS but wasn’t ethically or legally allowed to diagnose me as she wasn’t a licensed doctor.
The next few weeks were a whirlwind of medical appointments: MRIs, blood and eye tests, and a spinal tap. Right around Emily’s first birthday, I received a call from my neurologist. I had relapse-remitting multiple sclerosis. Fifteen years later I was diagnosed with secondary progressive MS.
My initial diagnosis was twenty years ago. The year after my diagnosis I gave birth to a healthy baby boy. In the following years, I became a yoga teacher and a preschool teacher. I got divorced, and a year later met my soul-mate who I’m still with today. Then I went back to college and became an English teacher, got my Masters, and taught at a university. In 2020, my partner and I moved two thousand miles to Minneapolis from California. On August 16, 2021, twenty years after my initial diagnosis I had surgery to have a pump implanted in my tummy and spine to reduce almost crippling spasticity. It did the job, but sadly I lost the ability to walk.
On my journey living with MS, I’ve done Western medicine: MS drugs, stem cell therapy in Mexico, and chemotherapy. I’ve done Eastern and alternative medicine: Tibetan medicine, acupuncture, herbs, massage, tapping, meditation, aromatherapy, cupping, and Emotional Release Therapy. I’ve followed an MS-recommended diet since I was diagnosed. I’ve practiced yoga and crushed CrossFit. I’ve prayed, done therapy, made vision boards, and chanted affirmations.
I’ve walked with a cane, a walker, crutches, used scooters, and now use a wheelchair full time to move around. I’ve done weeks of occupational therapy and physical therapy. I’ve dealt with depression and anxiety, and almost every possible symptom of MS: weakness, tingling, numbness, tightness, pain, spasticity, optic neuritis, fogginess, bladder and bowel problems, lack of balance, and fatigue.
In this newsletter, I plan on sharing my experience with MS in detail in the hope that my story helps you on your journey, wherever it may take you.
Jane’s MS Journey: An Overview