From the moment this blog idea began swirling around in our heads and in our conversations, I had this particular woman’s story in mind. I first came to know her when she was only a year older than my eldest daughter is at this moment in time. She was just a girl, but even then, her smile was infectious, her beauty undeniable. I still remember the night I saw her face only days after she had learned of the death of her father. I have never known a face that could hold together innocence and suffering as poignantly as her’s did all those years ago. It was one of the first faces that came to my own mind only a month later when the news of the Columbine shooting first began to break. As heartbreaking as those two tragedies proved to be, Margot’s story did not end there.
Let’s begin with your story…
Just over three years ago I began experiencing strange physical symptoms. I would suffer from severe headaches and my hands would hurt. At one point I thought I had carpal tunnel but then realized my symptoms didn’t really match the criteria. I would also have these odd experiences where I would answer the phone at work and I wouldn’t be able to speak or find a word. I felt extremely discombobulated and off balance. That’s when I started to think that maybe I had a brain tumor. That’s what I do sometimes. I go to the worst case scenario in mind. Which is probably connected to my story and the experiences I’ve had.
But then the symptoms would just disappear for awhile and I would return to feeling fine. It was like nothing had ever happened, so I convinced myself that it was nothing. Until the symptoms would return again. And the symptoms were becoming more and more difficult to ignore. Each time the symptoms would return I would do my own internet searches which would always lead me to some kind of scary diagnosis. So once again I would second guess myself and wonder if I was just acting like a hypochondriac.
Then there came a day when I could no longer ignore the symptoms. Both of my legs went numb. I remember talking with my husband and we finally acknowledged that this was something serious and that I needed to get into a doctor right away. I started with my primary care doctor equipped with my internet research. I asked him if he thought I might have Multiple Sclerosis (MS). Initially he did not seem to think that was the case and after several visits and him conducting an MRI on my lumbar spine to see if I had a pinched nerve or anything else that would explain my symptoms, he finally referred me on to a neurologist.
We were only three weeks away from a trip to Italy. I knew that I needed answers before then. So when I called the neurologist’s office and they told me that I wouldn’t be able to get in for a few weeks, I completely broke down over the phone. I just felt really powerless. I knew I needed help at that point, that this was something more serious. Fear was starting to settle in and I needed help. I decided to search online again but this time it was to find a nearby neurologist. So I called up the first one I found and she got me in within the next week.
When I arrived at her office, her first question was completely random, “What year were you born?” I looked at her and responded, “1984…why?” And she simply said, “Because you wrote 1884.” Once again, there it was – it was further evidence of the cognitive impairment I was periodically experiencing. By the end of our first appointment, where I shared my long list of symptoms she indicated that she wanted to further explore a possible MS diagnosis but would need to conduct an MRI to be sure.
So there it was. The months of wondering and denying and thinking came to a halt in that moment and I began to cry. In many ways, my neurologist was a fantastic doctor. She advocated for me to get an MRI the very next day. She took my symptoms seriously and didn’t make me feel like an idiot or a hypochondriac or a crazy person. But on that particular day, her bedside manner left something to be desired. She asked me why I was crying and I replied, “Well…you think I have MS.” I felt like it was a significant diagnosis. She, however, proceeded to tell me it was fine, that it was going to be okay. But it wasn’t okay.
What have you learned from this part of your journey?
It is so isolating when you have a diagnosis of any capacity. People would say, “At least you don’t have cancer.” And I get that. I understand that those kinds of diagnoses are significant life-changers. I’m painfully aware of how serious a cancer diagnosis can be since I lost my stepfather, John, to pancreatic cancer after already having lost my biological father and surviving Columbine. I knew this diagnosis wasn’t going to kill me, and I was thankful for that, but at the same time this wasn’t something insignificant either. MS doesn’t just go away. It is in my body forever.
The majority of people were very compassionate and very kind. But some people would turn it around and somehow make it about them or they’d give me advice about a new diet. Thanks, but no thanks. Or they’d tell me about their great aunt that has MS.
Why do you think people responded that way?
I get it. It’s hard to see people hurting. And it’s hard to not have something to offer. You feel dumb. But all I really wanted was for people to say, “I am walking alongside you.” I didn’t need people to tell me to be thankful for what I had and thankful for it not being something more life-threatening. I’ve learned that it is really hard for all of us to just be quiet, to listen, or to simply respond to the people we see going through pain with a heartfelt, “I’m sorry…this sucks!”
The truth is, I know I’m not the only person who has MS and it’s great knowing that there is a community of people in the world figuring out how to live with this disease. I am not alone. But my story is also unique. I was 27 when I was first diagnosed. I hadn’t even started a family yet and I didn’t know how all of that would be impacted by this disease.
Where are you at in your journey with MS now?
I began treatment right away for a couple of months before becoming pregnant. I went off of treatment during the pregnancy and was unsure of how that would play out, but surprisingly my MS became dormant all on its own throughout the entire pregnancy and remained dormant while I continued to breastfeed for a long time. This was such a significant break for my body. It was such an empowering experience. I became so thankful for what our bodies are actually capable of – I mean, I grew a humungous kid inside of my body. The fact that my body, this body that suffers from MS, could give life and sustain that life is amazing.
This past March, I began to experience a relapse with the MS. The main symptom is numbness throughout one of my arms. There have been some embarrassing moments because of the numbness and me dropping things. It’s a humbling experience. Living with this diagnosis feels different now. I know that I’m going to be okay so the fear doesn’t settle in the same way. It’s still incredibly sad to think about at times. When I see someone walking with a cane, I wonder if that’ll be me someday. That’s the deceiving part about MS – you can feel relatively well, but there can still be so much going on inside your body and you’re unaware and have no real control.
What do you want other people to understand about your story?
Before any of this happened to me I would have thought that people could just “happy themselves” out of their struggles. But that just wasn’t possible and I learned that what I really needed were people who would let me feel whatever I needed to feel. I told my closest girlfriends that I needed them to let me feel this. I just needed to be pissed off. I knew I would eventually be okay, but I needed them to let me feel whatever I was feeling. I wanted to be able to safely ask, “Why God? Why something so hard again? Why do I have to be the person who has this disease?”
At this point in my story, I’m able to look back at all that I’ve been through and have a fuller understanding of how strong of a person I really am. And I know that this strength did not come about from my own doing. It’s who I was created to be. But I needed to be pissed for a period of time in order to get to where I am now. More than anything at this stage of my life, I think of the fullness of my life. I think of how I’ve moved through all of these experiences, how I keep moving through them. Time gives you a different perspective on all of the things you go through.
What have you come to understand about the Divine in the midst of your story?
I have come realize throughout my life, ESPECIALLY with my MS diagnosis, that God is still working me…of course He is. I am moving in a direction to become a person I am proud of. It’s not because I am personally so great, but I think that what I do well is strive everyday to look at life with a fresh set of eyes, not always clear or perfect, but fresh and new. I know I am God’s Beloved Daughter and I do not take that lightly. When I became a Christian there was a constant reminder that life in Christ and through Christ was not always going to be easy, we will struggle but I try hard to place my hope in Him and to not allow the fears of past events or future things dictate how I live and love. But of course, all of this is obviously easier said than done.
When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares. ~Henri Nouwen
*Margot is a wife to David, a mama to Wyatt and her favorite beverage is a vanilla latte with cinnamon powder. We are so thankful for Margot. Her willingness to share her story with us and with all of you is evidence of her courage and vulnerability. We invite you to engage her story in the comments section below. May all of our reflections and comments bring honor to the beauty of her story.