‘My greatest wish is to live in a world where I can say, “I used to have MS.”’
“I go by many titles – I am a mother, a wife, a daughter, a sister and a friend. I have had multiple sclerosis for 22 years. I am proud to be the team captain of Team RoRoRo, the top Long Island Walk MS team.
“In 2001, I was a newlywed just starting my life with the love of my life, David. We were looking to buy our first home and the future was so bright. While trying to have a baby, I got terribly sick. I was experiencing strange symptoms and double vision in my eyes. I went to many doctors to figure out this mystery. I saw a neuro-ophthalmologist and I was told, ‘This isn’t about your eyes; this is behind your eyes. It is your brain that’s malfunctioning.’
“The doctor admitted me to the hospital and ran more tests. They couldn’t explain what was wrong with me. They started me on powerful IV steroids. They also told me that I was pregnant. Here I was lying in a bed on the maternity floor as both sets of our parents arrived to see me. I needed to tell them that I may have a tumor in my brain, but that I was also pregnant. It was bittersweet and frightening.
“They did a spinal tap and an MRI of my brain and saw no tumor. The steroids began to restore my vision, and they released me from the hospital. The doctors told me, ‘Go have your baby. We hope we don’t see you again until you give birth.’
“About seven months later, I gave birth to a healthy baby boy named Jason. About three months after that, the unusual symptoms happened again, this time harder. After many more tests, the diagnosis was confirmed. I had multiple sclerosis. This time they had found the lesions that were hiding so perfectly. I had a disease for which there was no cure. I was devastated.
“Would I lead a normal life? Could I have more children? Within days of my diagnosis, I called the Long Island chapter of the Multiple Sclerosis Society and learned about the various resources, meetings and support that I could take advantage of.
“I went to a meeting called ‘But You Look So Good.’ It made perfect sense. To the world, I looked fine. But I was hurting physically, emotionally and mentally. I attended several meetings and began to wonder how I could give back to the society and pay it forward.”
Twenty-two years later, we have raised over $650,000 for the MS Society.
“Within days, Walk MS Team RoRoRo was created by me and my husband at my dining room table. We sent out fundraising letters to our friends and family. We were hoping to raise $1,000 towards a cure for MS.
“That first year, I think we raised about $1,800, and we felt like rock stars. As my son grew, he sat alongside us at the dining room table and helped us stuff letters. Three years later, my daughter, Emily, joined the team.
“Twenty-two years later, we have raised over $650,000 for the MS Society. Our team attends the MS Walk at Jones Beach boardwalk in May, rain or shine. We are surrounded by family and friends and are by far the largest team, and we remain the number one fundraising team year after year.
“Each year after the walk, we invite everyone back to our house for a huge celebration, with all proceeds going to the MS Society. I know our efforts have contributed to walkers, wheelchairs, homecare services, costly medication and most importantly, research and development, to find a cure.
“Over the years, I’ve also mentored many newly diagnosed people who have received this difficult diagnosis. I share my story with them and show them MS has not defined me.
“Several years ago, we started a yearly scholarship, the Birns Family Scholarship, at Plainview-Old Bethpage John F. Kennedy High School to give a college scholarship to a senior who has made a difference in the lives of others who battle a chronic illness.
“I still live with the hope for a cure of MS in my lifetime. My greatest wish is to live in a world where I can say, ‘I used to have MS.’ Staying positive makes all the difference. I have good days and some not-so-good days, but I push forward.
“MS did not stop me. It has made me more determined to live the best life possible. I embrace each and every day and take nothing for granted. I am raising two healthy, amazing children.
“I have my amazing husband, David, who has stuck by my side in sickness and in health. He’s been my true love, my best friend, my champion and my rock. Our team motto for the past 22 years has been ‘As long as it takes,’ and that’s exactly how long I intend to keep on fighting.”
Interviewed by Rachel O’Brien – Morano