Whitney and I met in 2005, long before either of us would start writing online and a few years before she was diagnosed with Multiple Sclerosis. For the first article in the series, “Weekend Chats,” I asked Whitney a few questions about her life now.
What struck me most from her responses is her optimism. She wants to convey how this disease, with no logical progression, affects people, and build a community around it. She is creating a safe space for people to learn from her experiences and share their own.
Back in the day, I always thought of her as a little sister, someone I needed to look out for, even though she was fully capable of taking care of herself. Now, she is someone I admire. She didn’t ask for, or want, this role. She had dreams of going into medicine and taking care of others. Though her path was derailed by the challenges of MS, she is still taking care of others. She is a stronger woman than I could ever hope to be.
I asked why she felt compelled to share her story about life with MS publicly. She responded, “I feel like a lot of people know what MS is, but not the varying effects it has on people. My hope is always to bring awareness, provide a safe place for others to express their feelings, and make it known that though our disease paths are often different, we aren’t in this alone.
The best explanation I have found to describe the pathology of MS likens it to a frayed electrical cord that is unable to transmit a current properly, either some of the time or all the time. The protective covering on the electrical cord is like myelin, which is damaged in MS, causing our body to not receive signals properly, or at all. One of the biggest things to remember when it comes to MS is no two patients are the same. MS is referred to as the snowflake disease because there can be so many variations in symptoms and severity from one person to the next.”
She started writing about the challenges she faces with MS on her Instagram account, SmyelinWithWhit. There she writes about how her life has changed since her diagnosis, day-to-day challenges, and her successes. She is doing so much more than just sharing her experiences. She is creating a community of people who are dealing with the effects of living with MS and inspiring people who may not even have the disease to love themselves how they are and live in the moment.
I asked her why she chose the name SmyelinWithWhit and she responded, “I tend to have an upbeat personality and I really like to smile! Myelin is the fatty protective coating that enables nerves to transmit impulses. In Multiple Sclerosis, the myelin is damaged. Smyelin was a way to incorporate what my page is about (my life with MS) while also capturing a bit of my personality.”
Her biggest challenge she has had to overcome is really a lesson for all of us. She told me, “Giving up control and letting go of who I thought I would be has been my biggest challenge. MS is so incredibly sneaky. I am currently two classes away from completing my degree and unsure if life will lead me down that path again. I had a plan for everything and sometimes MS forces you to reevaluate that plan or scrap it altogether. Learning to roll with the punches and adapt is how I overcome the uncertainty that is MS.”
Life is uncertain for all of us, whether we have a disease like MS or not, so it is important that we take each moment as it comes. She echoes this thought when I asked her what the best thing that has come from her MS diagnosis. “I don’t wait anymore for the next Monday, the New Year, etc. If I feel I need to make a change or experience something, I do what I can to make it happen.”
She went on to tell me, “I also think it has helped me to be a better parent, daughter, sister, and partner. Being independent has always been very important to me, so to rely on my husband and parents for help at times was very hard. It has helped me to realize that I don’t need to do this alone. It’s okay to need help and to ask for help.”
“It has helped me to realize that I don’t need to do this alone. It’s okay to need help and to ask for help.”
Her family keeps her motivated. She told me, “Maintaining my mental health as well as my physical health is a really important factor, and my husband and children motivate me to do everything I can to remain positive and keep pushing forward. I’ve spent some time in very dark places since my diagnosis and it’s something I have to stay on top of and be proactive about. They help me to value the light and stay in it.
“Music is something I find myself gravitating towards especially when I just need to let my emotions out. One of my favorite songs is ‘Monument’ by A Day to Remember. The lyrics include the line ‘There’s no looking back from here, no more dwelling on my fears.’ There’s a lot of times I feel fearful of the future and have to remind myself that dwelling on those fears is counterproductive. A dear friend of mine died by suicide in 2016. It was one of his favorite songs, and it always makes me think of him. Mental health issues are common in MS and I struggle at times also. If you or someone you know is contemplating suicide, please contact the National Suicide Prevention Hotline at 1-800-273-8255.”
“If you or someone you know is contemplating suicide, please contact the National Suicide Prevention Hotline at 1-800-273-8255.”
She has some sage advice for anyone, ”Don’t wait. If there is something you wish to learn, experience, or accomplish, you owe it to yourself to do everything you can to make that happen. Our mobility is not promised tomorrow. Also, life goes on. It doesn’t go on exactly the same, or as smoothly, but I promise that you will find a way. The human spirit is remarkably unbreakable, and if you are struggling to not feel so broken, I encourage you to surround yourself with positive, but truthful influences. Life is not all sunshine and rainbows, but there are the tiniest glimmers of joy even in the thick of despair. Positive and truthful influences help us to see those tiny glimmers and hold onto them tightly. We can make it through. Together.”
“Don’t wait. If there is something you wish to learn, experience, or accomplish, you owe it to yourself to do everything you can to make that happen.”
Thank you, Whitney, for taking the time to answer my questions and to share your thoughts with everyone. Please follow her Instagram account, SmyelinWithWhit.