I recently shared Part One of My MS Story. If you haven’t read it yet, you can read it here. Here’s the next part of the story: Part Two.

I can’t explain what it’s like knowing that you have a disease without a cure. It’s scary. Maybe the scariest part is the unknown. MS is a disease without a cure. Researchers don’t know the cause and therefore the cure is also a mystery. Every person’s progression is different. Every day is laced with uncertainty. 

I was 3km from home on August 26th 2014 and my left leg had completely seized up. My muscles wouldn’t relax and I could hardly flex my ankle. You’ve got to be kidding me. Here I am trying to show by body that it’s not in charge, and it’s proving to me that if it wants to stop working, it will. I needed a new strategy.

I limped home with my headphones blasting in my ears. I was listening to Hillsong’s Young & Free album on my run and the song Wake was playing. “You will never fade away, your love is here to stay. By my side, in my life, shining through me everyday.” My body may fade away, but it’s not my body cooperating that’s going to get me through this. “Jesus, shine through me.”

I limped around for the next 4 days, brushing off questions from people who wanted to know how I hurt my leg. I don’t know how much longer I can hid this. I don’t know what to say. 

The students arrived back on campus and the fall semester was quickly in full swing. I was so certain that I was right where I was supposed to be. I had to teach and preach from a stool because my strength was so hit and miss, but I was reminded over and over again that God would be my strength. “God, you are my strength.” 

On September 30th 2014 I met with my first neurologist who conducted a number of tests and confirmed that he believed that I did, in fact, have MS. He was sympathetic and referred me to another neurologist at the MS Clinic at UBC  to confirm my diagnosis. I guess this was it. I really did have MS. 

2 days later, on October 2nd,  I celebrated my 30th birthday. In many ways I felt like my life was just beginning! I was young (ish), madly in love with my husband, fulfilled in my job, and surrounded by the best friends I could ask for. But in other ways I felt like my life was ending. It was such a weird feeling. I had hardly told a soul about my diagnosis, but even without knowing the story, I felt an outpouring of love on my birthday like I had never experienced before. I felt loved, respected and confident that I had people on my side. I’ll never forget it. I knew I was part of a bigger community.

That weekend Clark and I drove to Whistler to celebrate my 30th. He told me he would get me anything I wanted for my birthday, and well, I wanted to go bungee jumping! It’s something I’ve had on my bucket list for years and now seemed like a fitting time to do it. On October 4th I stood on the edge of that platform nervous with fear, but I knew that choosing to jump would confirm that fear had no place in my life. It was symbolic. It was liberating. “God, help me live in freedom.” (You can watch my bungee jumping video here).

I was still nervous to tell people what was going on, all while praying, “God use this for good.” How was God going to use it for good if I couldn’t even open up to the rest of the world? It was time to share. In the next few weeks I began to share my story with others. I told the student body at Summit where I teach and pastor, and I also shared publicly at a conference in Victoria, BC. I knew that part of my journey was going to be public but I wasn’t prepared for what that would mean.

On November 10th 2014 I met with my new neurologist at the UBC MS Clinic in Vancouver, BC. I spent 4 hours at the clinic going through tests, interviews, and information sessions. The doctor gave me my official diagnosis that day of Relapsing Remitting Multiple Sclerosis, a type of MS that goes through cycles of attacks or relapses, followed by periods of remission. He also went over my MRI with me, and for the first time I was able to see with my own eyes the damage that was on my brain and spine. I figured I had maybe 3 or 4 lesions, or scars, but as he flipped through the MRI images it was evident that there were far, far more than 3 or 4 lesions, the largest being the one of the top of my spine, causing the electric shock symptom when I flexed my neck. 

The doctor also went over treatment options with me, giving me lots to think about moving forward. I knew that some people choose to treat their MS naturally, some take pills, others give daily injections, and the newest option was a series of infusions. How was I supposed to know what to do? Can someone just tell me what to do? “God, give me wisdom.”

Although I had shared publicly about my diagnosis, I didn’t think it would ever be something I shared on social media. On November 28th that changed when I posted a simple photo on Instagram and twitter with the hashtag #StopDropSelfieForMS to bring awareness to the disease. Beneath the picture I posted: “This is how I feel about MS. I never thought in a million years I’d ever write this post, but in light of the publicity MS is getting this week, I want to put a face to a disease and a cause. This week #stopdropselfieforMShas been circulating through social media and for many it’s simply a hashtag. For me, it’s a lot more than that. I was recently diagnosed with MS, a disease without a cure that causes my body to attack the nerves in the brain & spinal cord and it rocked my world! This week I nominate all of you, my friends, family and “followers” to stop, drop everything you’re doing right now, and take a #stopdropselfieforMS. When you post your selfie, also take a second to pray for a cure and maybe even donate!” I was overwhelmed at the response!

I received messages and comments from all over world encouraging me to keep going. I had no idea my story could impact so many people. That week my story was featured on the Global News site, the Province, and our local newspaper, Abbotsford News. Crazy, right? The response from that campaign inspired me to continue to share my life and journey, and I began to talk about the treatment I had chosen to move forward with.

Clark and I had decided that I would move forward with Lemtrada, a drug delivered by intravenous infusion to reduce the frequency of relapses and to delay the progression of physical disability. The drug is infused over 5 days, and then 12 months later, a second 3-day infusion; after that there is no further treatment needed for 15 years. The drug basically resets your immune system and stops the progression of the disease. Amazing right? Here’s the kicker though, it cost more than $80 000! 

We filled out some paperwork and waited to hear back from our insurance company to see how much they would cover. We expected that they would contribute at least 80% and were hopeful that maybe, if we were lucky, they would cover 100%.

On December 12th 2014 I called the insurance company to see if they had an answer about insurance coverage. “I’m sorry Ms. Moran, but we will not be covering your drugs.” Wait, not at all? Not even a single dollar? I was in shock. I was devastated.

I sat hunched over in my kitchen chair sobbing. I don’t have $80 000. What was I supposed to do now? “God, now what?”

To be continued…

PART 1 | PART 3