Folks quietly chat among themselves as they settle in their pew for morning worship. A woman with two small children quickly slides in a row near the back of the church just as the choir begins to march. In burgundy and white robes, the teen choir Tomorrow’s Future, enter the sanctuary under the watchful eye of their director Ondra Thomas.
The church, Bethel A.M.E Lancaster, has been a consistent staple in most of Ondra’s life. Growing up she was active in the children’s choir, Agape Steppers Drill Team, Young People’s Department (YPD) and the youth ushers. As a young adult she directs the teen choir, assists with youth outreach, and volunteers for Living the Experience; yet few people know the details of her everyday life.
On some days she looks a little sleepy or moves a bit slower. Perhaps some people assume she had a busy evening, or that she is just a bit under the weather; but what many people do not know is that lurking behind her big smile and warm spirit is a destructively debilitating invisible chronic illness – Multiple Sclerosis (MS).
A hospital visit after a car accident, nearly a year ago, led to Ondra’s diagnosis. While waiting to be seen by a physician Ondra developed pain in her right eye. Within 24 hours she had completely lost vision in the same eye. Medical specialists diagnosed Ondra with Optic Neuritis and told her she had lesions on her brain. Shortly thereafter, she was diagnosed with MS.
MS is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and the body. To the outside world Ondra looks fine so she must be fine. However, the unpredictable waves of wellness and illness of a person living with MS are disruptive, isolating, and impossible to explain. In fear of being stigmatized, rejected or accused of being complainers people with chronic illnesses are sometimes reluctant to share their health experiences even among their closest friends and family.
My faith and family is what keeps me going most days. Sometimes I wish people would understand if I say I’m tired or I'm in pain – believe me. I may be only 31 but the days I'm moving slow it's because my body just won't let me go any faster. Those are the days I feel like I'm 80. I see a physical and occupational therapist twice a week. I give myself injections 3 times a week and take many other oral medications to help manage my symptoms.
The sporadic inconsistencies of the disease forces Ondra to remain conscious of how environments, activities, or food might affect her health. In other words, even during times of wellness, she must remain cognizant of triggers. Ondra graduated from J.P. McCaskey High School in Lancaster PA in 2003 and received her nursing degree in 2013. She began her nursing career but the effects of the disease forced her resign and focus on her health.
My life has changed drastically. I have not worked in almost eight months. Not only does this disease have many symptoms and can affect everyone differently, but it's hard to explain to others. I've had optic neuritis in both eyes, nerve pain in my extremities and sometimes face, tingling and numbness in my extremities at times and I am fatigue almost every day. There are some days (especially during a flare) that I don't have the strength to take a shower. Somedays thinking about moving tires me out. This disease causes crazy emotions that sometimes you can't control. One minute I'm ready to cry and the next I'm ready to curse someone out.
As with many people living with a chronic invisible illness Ondra is engrossed in a never ending process of change. A decrease in social life and less involvement at work and family events are common effects of the disease. And, while Ondra is learning to manage within her present reality she desires to increase MS awareness within her local community. One of the ways she plans to accomplish this task is through her upcoming PaintNite. The event will be held Friday June 24 at the Crispus Attucks Community Center.
"I've always wanted to go to a paint night and when I saw they hold fundraisers I thought it would be a fun way to get together, inform others about MS and raise funds." MS related complications have prevented Ondra from working yet she continues to keep her faith and is encouraged about her future.
I have not had any an income in almost 8 months and yet I still have my home and my car. That's nothing but GOD. He has placed some wonderful people in my life which I will be forever grateful for. I don't know how I would have been able to come this far had it not been for God, my family, church family and friends.
Ondra and others interested in social support of the chronically ill are working to increase awareness, support, and funding particularly within communities of color. In many cases people of color are impacted in greater numbers and more severely than the majority culture yet information created by and directly targeting this population is lacking.
If you are unable to attend the paint night but are interested in donating towards this worthy cause, please click here. Any donation amount is appreciated.