Updated: Jul 22, 2019
by Melanie Nicholas
I went to see my new neurologist this week, and as I was going through my very long medical history, it hit me. I have had multiple sclerosis for almost half of my life now. I can see that nearly every piece of my adulthood has been touched by this disease. My entire marriage, my motherhood. My career. I have had this disease so long, that I no longer remember not having it.
Multiple sclerosis is neurological disease that attacks the central nervous system’s brain, spinal cord and the optic nerves. I started having MS attacks in 1998. When I was finally diagnosed in 2003, doctors said I was lucky to still be walking. I hadn’t been able to feel anything from my belly button down for almost two months and what I thought was a pinched nerve was actually an MS “relapse.” I immediately started rounds of steroids and then medication to try to calm my immune system.
MS affects each person differently, and not every drug developed to treat MS works for every patient. The first two medications I took did not stop my MS relapses. I have had a multitude of symptoms, including vision loss, slurred speech, hearing loss, the inability to see in color, bladder spasticity, and painful numbness and tingling that affected my ability to walk, drive and use my hands. After the birth of my son in 2008, I lost the use of my left arm and had limited use of my left leg. I could not take care of myself, much less my newborn. My mother had to come stay with us, and I cannot even begin to put into words how traumatizing it was to be bathed by my mother after my c-section.
That was the year I transitioned onto the wonder drug, Tysabri. I took Tysabri via infusion for a decade and loved it. My body was my own again. The relapses stopped and I developed no new damage to the cells of my brain or spinal cord. Two years ago, I started a new MS drug called Ocrevus. Like Tysabri, it works unbelievably well for me. So much so, that my disease is practically invisible to people that don’t know me well. The only symptoms I really notice are that my memory doesn’t always work as well as I would like. I sometimes struggle with depression and anxiety. I have nightly painful leg and foot cramps and the dreaded MS fatigue. When it starts to warm up, I will be dead on my feet. I need to nap in the afternoons and rarely leave my house during the hottest part of the day. It is hard to explain the kind of exhaustion that MS triggers. Bone tired. Nauseated. Wilted. Weary. Something another friend described as feeling like you have been hit by a truck. Every. Single. Day. But I get through it. I have to, people count on me. And I am not ready to give up.
The worst part of MS for me, well, it’s the unknown. It is typically a progressive disease and I worry about what our lives are going to look like in another 10 or 20 years. Will I be able to walk into commencement when my children graduate? People with MS often have shorter life expectancies. Will I live long enough to see them marry and have children of their own? But I try to push those thoughts out of my head when they come. Fear steals joy. And I want the joy.
Given the option, I would not choose to have MS. But I am thankful that I can see the silver linings in my diagnosis. MS gave me perspective. It helps me see where I should invest my energy and what is worth fighting for. My husband and children are the very best things that have ever happened to me, they help me remember to never give up. And I have an incredible group of friends that will drop everything to help me if I need them. I have a mother that will bathe me and make is as not-weird as she possibly can, too. And I have developed a heart for other mothers, especially the struggling ones. Been there, sister. Let me help if I can. These are the places I choose to be in and invest in.
I have been privileged to have some of the very best doctors in the world managing my care. Genius scientists that are realists as well as optimists. They give me great hope that a cure will be found in my lifetime. My heart goes out to everyone living with multiple sclerosis. Chances are, you know one – there are about 1 million of us here in the United States alone. I know that I am one of the fortunate ones.
Not everyone is so lucky. Raising awareness of this disease and helping fund a cure are vital.
So, how can you help? If you have a neighbor, co-worker or loved one living with MS, educate yourself about the disease and its effects. Then ask them if you can help. Support the National MS Society or your local chapter through volunteering and fundraising. The National MS Society is on the frontline, helping to end MS as well as support those living with the disease. Every penny and every hour donated matters to someone. Someone like me. We are mothers and wives, daughters and friends. We are #visible, we want to be seen and heard. And we want you to know that we need your help.
To find out more about multiple sclerosis, please visit www.nationalmssociety.org.