This week is Multiple Sclerosis Awareness week around the country and this topic is so important to our family. During my senior year of high school, my mama was diagnosed with Multiple Sclerosis after a horrible bout of symptoms that took weeks to recover from. During that time, the optic nerve behind her eye had swollen so much that she went temporarily blind- a moment that was, no doubt, extremely frightening for her and for us as a family as we navigated the best way to help her get back to normal. Doctors ran a slew of tests for what seemed like weeks and put her on a heavy round of steroids to help reduce the optic nerve swelling. A few weeks later, my mom regained her vision in that eye, but was hit with the words: “We think you may have Multiple Sclerosis”.
According to Healthline.com Multiple Sclerosis affects between 110-140 out of every 100,000 people in the northern states of the US. More people are diagnosed on the northern half of the country than the southern half. Multiple Sclerosis is diagnosed when doctors see weakening or destruction by one’s own body of the myelin sheath that surrounds nerves. Without this myelin sheath, the “messages” that are being sent through nerves become extremely slow or non-existent. This means that someone with Multiple Sclerosis may experience lack of movement with limbs, lack of the ability to concentrate, inability to walk with a normal gait, joint pain, neurological pain or depression. It also means that the disease can cause extreme disabilities and abnormal ability to function on a daily basis.
Treatment for MS involves utilizing what they call “MS Modifiers”. These medicines typically fight back against ones own body to protect the myelin sheaths from being destroyed. There is no current “cure all” available, but the medicines being used to slow down the progress have been proven successful for many people. Due to the nature of the medicine, it’s extremely expensive and it also can cause some nasty side effects. Doctors typically like to watch a patient carefully and examine how the medicine is affecting them in all areas.
Battling MS is costly, strenuous, exhausting and sometimes debilitating, but my mama has battled against this nasty disease with so much power and strength. She has utilized the help of her neurologists and the team of physicians that all make sure that her symptoms are managed well. She’s been on some MS modifiers over the years– at times, you have to out weigh the risk with the benefit. She’s seen some nasty side effects, she’s been in several “experimental” categories, and she’s researched every medicine there is out there.
At the moment of her diagnosis, my mom was a full-time working nurse in an Alzheimer’s unit of a skilled nursing facility. She was loving her job and we were in a place of financial stability. And..suddenly this diagnosis and disease comes barging in like an unwelcome guest. She had to step away from her position, as she focused on healing and finding a new normal. But her strength was/is so inspiring. She never gave up hope and she knew that, somehow, it was all going to work out. For years, I have watched her put her faith in a loving God above all of her challenges and all of her weaknesses.
These days she does not let her disease stop her. She volunteered for Parkview Hospital and American Red Cross loving people through her ability to shine God’s love to them even through her darkness. She has taken up volunteering her time to sew for a company called Little Angel Gowns- they use used wedding gowns to make bereavement gowns for still born babies. Personally, she has been such an amazing example of unconditional love. She held me at my best friend’s funeral. She was right by my side the entire time that I cared for my dad. She came to the most difficult appointments and she held my dad during intense, awful pain. She has helped Josh and I immensely in our fundraising and the products she has made are professional level.
More importantly, she’s kept her faith and her dependence on God. It has never wavered. She is full of light and love. She gives her strength to praying for others and she is always available for a friendly phone call or visit. Even 10 years after her diagnosis, she’s beaming with LIFE. I’m so thankful for the ability to have a friendship and relationship with her even through everything she faces every day.
MS won’t beat her down and it won’t win. Research has come so far over the last decade to provide ways to better manage symptoms, but also to keep the disease from spreading. Breakthrough discoveries have taken place on how the disease could be linked to certain viruses or environmental factors. My hope and prayer is that through awareness, research, and donations, we will one day have a cure for this awful disease and be able to beat it down once and for all.
We love you, mama. ❤