Sit back for the next few minutes while I tell you a story. It's about time I did this...
On May 6th, 2017 I ran the Run for MS 5K. It's not like this was my first race, nor my last, but it was special to me because it was for me... and several of my dear friends. You see, something I had not been open about for years was that in January of 2014 I was diagnosed with Multiple Sclerosis and began treatment. MS is different for each person and, in my case, what finally led to diagnosis was the loss of feeling in my legs & eventually my whole lower body. This numbness began on a normal Tuesday morning that January & crept up until I was walking & getting around on muscle memory alone. That is the reason running is now so special to me. Thankfully during that MS relapse I retained muscle control. But every step was taken in hopes that my feet landed right & I didn’t fall. Along with it came stiffness in my knees & I felt utterly helpless much of the time. Once, when the stiffness came in addition to the numbness, I had to sit down mid-way up our stairs with my 15 month old little girl because I just couldn't make it up the stairs. I sat down & cried & held her & prayed. I will also never forget walking out in front of thousands of people to lead worship during several church services one weekend that month praying I wouldn't fall coming on & off stage. As I heard myself sing into the microphone "now by Your grace I stand, healing is in Your hands" it was such a literal statement & powerful moment for me. I was learning a whole new level of dependence on God. During that season there was no guarantee that I would ever regain feeling, which was a big adjustment. It was nearly 2 months before I did regain most of the feeling back, and though it was a slow progression I did eventually get back to normal. I still deal with episodes where I get creepy crawly or buzzing sensations down my legs and feet that come along with weakness or a little trouble balancing, which are residual symptoms that I’ve been told I may always have occasionally. Most people think of MS affecting the brain only, but this all happened when it had reached my spine too.
At the time I was diagnosed I decided I wouldn’t post it all over social media, though I never stopped thinking about it. I was afraid it would seem like I was asking for people to pity me or treat me differently; and that was how I rolled with it for the next few years. Then, last year on Labor Day weekend (2016) my hubby and I decided to hike a 14er since we were living in Colorado. We joined a couple friends and headed up Mt. Bierstadt. I had heard an interview with another gal with MS the week before that had been so encouraging to me. It gave me a boost of energy and renewed confidence to keep pursuing things I enjoy. Now, here I was struggling to get up that mountain. Everyone had to keep stopping to let me catch up because I was moving so slowly. Every step was a bigger and bigger challenge because my knees were stiffening up again to the point my hiking poles were being used like canes or crutches. Suddenly, I flashed back to that time I was holding my baby and couldn’t get up the stairs and I felt helpless again. But I am stubborn and just kept going. By the time we reached the ridge I felt so defeated and I started to cry, telling them to go on up to the summit. I’m proud to say that after a while, I was able to make it to the summit to both my husband’s & my amazement. The trip down wasn’t easy, but as I was hiking down it became clear to me that it was time to finally open up about my MS and what it’s like living with it. I want to be an encouragement to other people dealing with these kinds of trials and challenges. It had been so good to hear someone describe what I had been through and who understood the challenges of living with it – not just physical challenges, but the emotional and mental challenge it continues to be. It was good to know that someone else out there got what I was dealing with more fully than I could ever convey to even those closest to me. It was time for me to tell my story…
I could go on & talk more about the craziness of MS - of how heat affects me, or of my recent MS related episodes. But I’ve already written a lot and I remain grateful that I do have feeling back in my lower body and legs, for the most part. The MS diagnosis was kind of a relief because it explained other symptoms I had been dealing with for years. I have now adopted a line from one of my favorite worship songs that says, "I'm gonna sing until my voice won't let me." That's how I plan to live. Knowing MS can affect anything in my body where I have nerves (everywhere), I want to live fully and not delay while I have the ability. Hopefully I always will, but the unpredictability of MS is one of the most difficult parts of living with the disease. So I sing, I ski, I hike, and I run - through the symptoms that come. “I’m gonna do all those things until my legs and body won’t let me.” And even though MS fatigue feels nearly unbearable some days and I forget things easily, I will keep going and pushing through.
I hope you realize that MS is something a lot of people around you might have and you not even know it. Medications developed in the past 20 years to stop or slow the progression are life-changers. Many of us are pretty good at hiding it too. But ask those who live with us and they could tell you a whole different story. I hope my story has encouraged you in knowing that you are not alone in whatever trial you are going through, and that you can live life to it’s fullest every day. It may be different than what you thought it would be, but there is still so much to enjoy when you look around. Remember, though you may be met with limitations, you still have a place in this world and reason for being here.
Finally, for me and for my friends Sarah, Mikal, Deana, Lauri, Sam, Jamie, Shauna, and KJ - all friends of mine who live with some form of MS - and for the dear friends and family who help us along - please consider making a donation for the sake of continued MS research and services that will affect all of us and our families.
Thanks…
