My Multiple Sclerosis Story
By Jodi Johnson
My name is Jodi. Yellow is my favorite color, I laugh at my own jokes so hard you can’t hear the punch line, and I am known for my world-famous gluten & dairy free pumpkin bread. I am married with two children, ages 9 and 6, and work full time as a mortgage underwriter. My hobbies include writing, traveling and playing Legos. I love to volunteer in the kid’s art classes at school. I am a Girl Scout leader. I wake up super early in the morning to exercise. My kids might tell you I build awesome forts. My husband might tell you I am always up for an adventure. My friends might tell you that they don’t know how I do it all. I might tell you that most nights I fall asleep before my head rests comfortably on my pillow. All these things make my heart full and my body tired.
All these things also comprise my normal life. But you see, I am a double agent. In addition to my normal life, I also live with multiple sclerosis. MS is the dark knight in my life, a stealth yet destructive sidekick always riding alongside of me. I have been living this parallel path for almost 12 years after having been diagnosed in January of 2008. Life has been challenging with MS but I would like to think we’re finally living at peace with one another.
Within the last 4 years I have come to no longer walk on my own, without the assistance of a walker or a mobility scooter. I can stand and still pose for pictures after I shimmy myself around, often with use of people’s arms and any stable object within reach. We still have family dance parties at home by which I balance against the kitchen counters or nearby furniture. Where I once saw myself running along the sidelines of my kid’s soccer games, I now roll along them with the same excited cheering as if I was on my own two feet. Last year I found a scooter that made it possible for me to board an airplane again and still hang on to my independence.
The thing is, I have come to learn over the years that life is going to go on. With or without chronic illness. Living in peace with multiple sclerosis has meant living life as it is and letting go of how I thought it should be. Strolling or rolling, I am either going to show up or I am not. I decided to start showing up. I learned that I could still dream big with a chronic illness and I have proven to myself that I can make those dreams come true, even on wheels. And I have also become humbled to the fact that when one door closes, another one can open. Prior to MS I was an avid long-distance runner and lover of high heels. When MS disrupted my road racing and shoe dreams, I found a new appreciation for other healthy movement practices like yoga and cycling on a stationary bike at home. I found new ways to express myself through fashion with other accessories and bright colors. My slower lifestyle has allowed me to focus on writing where I find it easier to cope with and share the beauty of this journey through written words.
My MS story began like this…
At a vibrant 31 years old I was climbing the career ladder and making big life plans when I found myself sitting in a neurology office staring at the doctor’s computer shining brightly with what looked like lightning bugs dotting an MRI of my brain. Relieved that a particularly large one was not a tumor, I heard him say you have multiple sclerosis. The rest of that appointment goes blank in my memory. My diagnosis came after a year of back-to-back intense exacerbations.
My symptoms during the year prior in order of appearance were cognitive dysfunction, numbness and tingling in my legs from the knees down, temporary loss of mobility in my feet – no flexion, and double vision.
Each episode lasted a couple of months. Even though I knew something was not quite right I blamed my early symptoms on other changes in my life – a new job, an unusually hot summer, and general stress in my career. When the double vision began as a dizzy feeling I went to the hospital and a new direction in my life unfolded from there. MRI’s, cognitive testing, appointments with neurology, 2nd opinions and questions. Many, many questions and the search for answers with endless internet searches that took the place of those long-distance training runs. Despite the diagnosis, I did not make many changes to my lifestyle in the first few years. I remained focused on my career and starting a family.
In the five years following my diagnosis we had two children and I had two flare-ups, one of which occurred during pregnancy with my 2nd child. I continued with the fast-paced lifestyle of career and family, MS quietly nagging me. There were subtle changes that I refused to acknowledge. The numbness was returning when my legs became fatigued. I was limping at the end of my long days, my left foot dragging along. Random falls were becoming more frequent. I told myself that it would all pass, just like before. I maintained a level of naivety during those days that prevented me from worrying about the future. Once my son was coming out of his stroller days, I began my own rolling days and my mobility sharply declined. I didn’t know when or if the decline would slow or stop. My MRI’s were stable however I went from walking to not walking in 18 months. It was the jolt I needed to make a long term, life long, commitment to a consistent healthy lifestyle. Every day, no excuses.
The lifestyle I adopted was not only a whole foods healthy diet and daily exercise, but also a supplement plan under the care of my doctor, meditation, and reducing stress as much as possible. I feel fortunate to have continued to maintain a full-time job from home which is helpful in preserving energy and mental acuity.
The most important thing I did however was rediscover me. I read personal growth books and listened to inspirational podcasts. MS can seemingly take so much away and is a clear definition of an uncertain future. In fighting against MS I realized I was not being present in my life. I was angry and resentful which wasn’t the core of who I believed myself to be. I knew I needed to look at my life in a new way. There are always restraints – time, money, how I may feel on any given day – but I would not let that stop me from feeling happy. When my mobility was spiraling down, it was easy to slip into the negative space of saying, “I can’t.” When I became aware that thoughts of “I can’t” were on repeat over and over I felt like Oprah and one of her ah-ha moments. There had to be a better way, there is always a way.
I flipped the switch from darkness to light. No legs, no problem. I started to ask, “how can I?” Although very difficult to accept, I first rented wheel chairs to go to sporting events and take my children to the zoo. Then I purchased my own walker-wheelchair combo to travel to Portugal with my husband, then to Costa Rica to go zip-lining. Next came my first scooter and my first mall trip in several months where I could independently browse and shop. The new freedom to do something that seems so commonplace or insignificant was exhilarating. Just this last year I was able to save for and purchase another scooter that electronically folds into the size of a large suitcase. And in this last year, that scooter and I boarded 12 airplanes!
Focus on what you can do, instead of what you cannot.
For me, that shift in the perception of my MS and the use of mobility aids gave me my life back. I still have MS, and I still need wheels to get me around and I still live with the unpredictable nature of MS. And in whatever way it chooses to present itself with me today, I know that I still get to choose what makes me happy. It is also important to me that my husband and children can still depend on me to be there for them. Life had become unexpectedly different for all of us and I strive to be the best example of determination and resiliency so none of us feel held back. Together, we can accomplish all things.
Now, at 43, I still feel vibrant and full of life. It took vulnerability and courage to accept my disability and to accept an adapted lifestyle. So yes, I am a double agent. Living my life fully and taming the MS beast on the side. You don’t have to push yourself in the way that I do, I just want you to know that however you want to live your life, you absolutely can. Even with MS, the dark knight riding in your side car.
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