Author: Jerry Higgins, Internal Communications Officer
“You don’t make progress by standing on the sidelines, whimpering and complaining. You make progress by implementing ideas.”
-- Shirley Chisholm, former seven-term U.S. representative from New York and first African American woman elected to the United States Congress.
RALEIGH – Charlotte Williams remembers the Monday morning like it was yesterday.
About 15 years ago, Williams felt fine watching movies during the weekend. She woke up and prepared to go to the office as the PREA Director. However, she said she started seeing “three of everything” when she woke up but still came to work.
She visited an eye doctor and then tried to see a neurologist as she suffered from double vision. About two weeks later, Williams said she started to “lean heavily to the left and couldn’t stand up straight.” She was taken to the emergency room and diagnosed with swelling on her brain stem and one visible brain lesion – an area of brain tissue that showed damage from an injury or disease.
She was monitored for the next six years as she dealt with migraine headaches. No new lesions formed but in the summer of 2015, she had a Level 5 migraine – best described by Williams as “unbearable pain, that even a little bit of light and noise hurt, and even smells can make you nauseous.” She underwent another MRI and was officially diagnosed with multiple sclerosis, a disease in which the immune system eats away at the protective covering of nerves.
“It was the first time I faced a major illness,” said Williams. “I was stressed out. My attitude changed. I took it out on my husband. Everything was spinning around me. I had to learn all I could about MS. IF I wanted more kids, I couldn’t take the meds. I feared what it means to live with relapsing MS. My husband couldn’t decide how I should live. My neurologist couldn’t decide. I had to decide.”
Williams came up with a three-part plan on how she would deal with a life of MS:
- Be her own advocate;
- Stay in the Fight, no matter what it looks like; and
- Choose to live the best life that she can with her relapsing MS.
Williams read all the materials she could. She found women like her who was her age at the time living with MS, and she studied MS and African American women. Williams started research and support groups and met a woman with MS who worked in the Archdale Building in Raleigh where PREA was located.
“She had trouble walking. She said it’s not a sickness undo death," said Williams. "She told me you must find a way to pull yourself up and live with the diagnosis.
“Her push helped me. I had to figure out things on my own. I battled fatigue. Some days I felt like a wet blanket was on my back and I had no breaks. I fight every day. I never miss a beat at work but some days I am exhausted.
“This happened to me and no one else. How MS impacted my husband, kids, mom didn’t matter. There were stages of grief I went through. Some days I must ask for help to fix food. MS meant changes to my family. As a new person, I discovered every day what I could do and not do. I must respect the disease and pay attention to my body. It’s OK to take a day off. I must rest and not end up out for 35 days (which has happened).”
Williams said she is inspired by the words of former Rep. Shirley Chisholm. And as is not surprising to anyone who knows or has worked with the kind and caring Williams, she has become a national patient ambassador for MS. For the past couple of years, she has traveled around the country speaking at conferences, telling her story, listening to others, and providing support where needed. She said she’s met hundreds of MS patients over the past eight years, and each has a unique tale. But there are many similarities as to how they’ve dealt with a life with MS.
“None of us look alike,” Williams said. “There are some similarities like fatigue or trouble walking, but how it affects us or manifests within us is different. You must stay in the fight, listen to your body and know the game plan when I have problems. I have a great network at work. People can know what’s happening, how to respond if I need immediate help, and my husband’s phone number. That means everything to me. “
Note: March is Multiple Sclerosis Awareness Month. To read more about Charlotte’s story, click here for an article in the March edition of Women’sHealth Magazine.