By Patty Servidio
As the philosopher known as Osho once said, “For awareness, you need not go to the Himalayas; you need not go anywhere. Your life gives you enough opportunities to be aware.” This statement rings true for many of Life’s experiences, for when we are aware of something, we have the power and the opportunity to create change.
If someone were to mention “Multiple Sclerosis”, I am certain that many of you can state that you know at least one person who is living with this chronic disease. I am one of those people who belongs to the MS club, which can, at times, be challenging. The disease, which affects the central nervous system, causes a person’s immune system to attack the myelin sheath, or protective covering, around their nerves. This causes disruptions between the brain and the body, which can cause anything from mild to severe symptoms. While medication and physical therapy can help to reduce some of the symptoms such as pain and fatigue, there is no cure. At present, there are almost one million people in the United States who are living with MS.
Educating the public about the disease’s unpredictability and the complex nature of MS is the primary goal of awareness programs. Another goal is to offer support to those living with MS. For those who are wondering, orange is the color of MS awareness.
Many years before I had been diagnosed, a colleague of mine offered me a prismatic ribbon that appeared iridescent. She said that her sister had just been diagnosed, and asked if I would be willing to keep the magnetic ribbon on my car as a show of support and awareness of the disease. I told her that I had a family member who had also been diagnosed in her late teens and would be happy to show support. I kept the magnet on my car until it began to peel off in pieces.
I have a friend in California who promotes awareness on her Facebook page. Every day in March, she offers a simple anecdote about living with MS. Sometimes, her stories are hilarious. Sometimes, they are downright frightening, especially when she discusses how the disease has affected her physically. Always, I relate to her stories because they could have been written by me. While MS affects people differently, my friend and I share some similar symptoms that have enabled us to bond strongly. She has frequently offered me a room in her home for a week, just so that we can share a bottle of wine and some stories about our “adventures with MS”. It sweetens the pot a bit because she is as much of a flamingo lover as I am.
When I was first diagnosed, there were those who found it hard to believe that I had it. This is the reason for education because many people think that MS is like muscular dystrophy. This is why many people tell those suffering, “But you look so good!” This is the bane of our existence, and it is even the name of a support group that is held at a local hospital.
For many years, I captained a team for the yearly Walk MS. Since the pandemic, I had been unable to attend due to my immunosuppression, which is directly related to the medication I will take for the rest of my life. This year, I have been considering captaining another team, which will consist of my husband, daughter, son-in-law, and myself. I will walk ahead of the crowd, if I decide to walk, to show support for those who can’t walk. MS is a disease that tries to stop people from moving. I’d like to tell MS, “Oh, yeah? Hold my beer!” While I have attempted (and completed) the walk in the past, I would be venturing out there with a quasi-healed hip, hence the “hold my beer” statement.
If you want to help spread awareness, I invite you to wear orange. It could be an orange lapel pin, an orange T-shirt, or just an orange bracelet like the Livestrong yellow rubber bracelets. If you know someone with MS, you might learn a little about the disease to show support and to help you to understand how that person feels.
The disease does not just affect us. It affects our families, our friends and all the relationships we have. It affects how we live our lives, and it affects how we can live in a post-pandemic world. More education means more awareness, and hopefully that awareness will lead to a cure.
If you or someone you love is suffering with MS, there is help. Please contact the Long Island Chapter of the National Multiple Sclerosis Society by visiting www.nmssli.org or www.nationalmssociety.org. Walk MS will be held on Saturday, May 18th, 2024, at Jones Beach, Field 1. There is a one-mile route and a three-mile route. Kickoff starts at 10:00 am, but registration is required for the event, which begins at 8:30 am. Donations of $100 or more get you a free T-shirt! For more information, please visit https://events.nationalmssociety.org.
