“When I was young, I might have been described as a girl who was rather quiet, but my brain was always loud. My childhood was happy, healthy, and uneventful in a good way. As a young woman, I went to college, started a career as an art teacher, and married the man of my dreams. I was really crossing off the bullet points I had on my ‘to-do’ list for life. Blissfully unaware, I never had reason to suspect anything would go wrong before it did.
In 2012, my life had swung into a perfect suburban balance and I was enjoying every minute with my young, growing family. I spent most of my time chasing my 2-year-old daughter and rubbing my pregnant belly. In October, our second, perfect baby girl joined us, and our family felt complete. A couple of weeks postpartum, I bundled my girls up for a trip to the neighborhood playground. We made the short walk to the park and by the time we arrived, my left leg seemed to be developing a mind of its own. I could lift it, but when I tried to set it down, it would slap the ground. I tried hard to control it, but each step was more awkward than the last.
My thoughts began to swirl uncontrollably. ‘What is happening to me? Am I having a stroke? My kids aren’t old enough to call for help. Please, dear God, don’t let me die!’
I panicked and we started back home. I leaned on the stroller more and more as we neared the house. With rest, my leg returned to normal (mostly), but with any exertion, I developed what I coined as ‘slap foot.’ My fear was palpable over the next several days as I began to schedule appointments with my obstetrician and family doctor. The sense of dread I had about what could be wrong with me was paralyzing.
My obstetrician suggested I give my body more time to heal from childbirth, so I tried to wait it out a few more weeks. The days were long and always punctuated with a growing lump in my throat. I tried to care for my children and act as ‘normal’ as possible, but the balancing act of caring for two little girls and running a household was getting more difficult by the day. My leg continued to fatigue to the point where it was functioning more like a flipper and although I began to visit doctors and specialists often, no one seemed to have any answers for me. One doctor would scratch his chin and refer me to the next. I was diagnosed with anxiety or postpartum depression time and time again. I mean, sure I was a little ‘on-edge’ but maybe it was because I was trying to carry two children and stay upright with a leg about as stable as a block of Play-Doh?
In the end, I couldn’t tolerate the prescribed anxiety medication and I was certain something was really physically wrong with me. Not just nervousness, baby blues, or exhaustion, but that’s what was jotted down in my medical file time and time again. I didn’t know what to do, so I bought two gratitude journals and stepped up my church attendance. It was time to ask for a miracle, and believe me, I asked!
I was fit and healthy just weeks before, and I knew I had to find answers, so I immersed myself in internet queries. I know it is not recommended, but I didn’t have a choice! My worrisome nature was forcing me to earn my pseudo-medical degree online in an attempt to save my own life. Dramatic yes, but I have never been one to panic half-way. After hundreds of hours of research, I was convinced I had Multiple Sclerosis (MS). I told everyone, and no one believed me. Not my doctors. Not my parents. Not my chiropractor. Not my cat. My husband believed I had a problem, but also didn’t want to believe it was MS.
After months of pleading, my family doctor agreed to order the brain MRI I had been begging for, just to put my mind at ease. My prayers had been answered and the MRI came back clear! I later took the images to a neurologist who confirmed they were perfectly normal. I could finally relax. I was elated. My thoughts swirled again, but this time, I was burgeoning with gratitude. ‘Thank God, I don’t have MS! I am so blessed to be healthy! I vow to be the very best version of myself now that the nightmare is over!’ This was definitely the time in my life to hit me up for any favors. I was determined to prove to the universe I was worthy of a fully-functioning body.
When I wasn’t limping and carrying an infant or gritting my teeth through tears of continued anxiety and frustration, I searched for answers having nothing to do with MS. I found myself trying all sorts of suggested medical and therapeutic remedies: supplements, pain management, yoga, chiropractic care, and hypnotherapy to name a few. Still, the symptoms persisted. My leg wasn’t just fatiguing anymore, it was tingling, and I was starting to lose my balance often. My next stop was a visit to a highly acclaimed orthopedist. Luckily, he knew exactly what the problem was, just a minor spinal defect! Not great news, but I was assured he could remedy it, and I was over the moon to have an answer.
The doctor prescribed a torso cast to wear for 3 months. I agreed. I was advised not to pick up my baby and my life felt impossible. I had to hire a nanny even though I was taking a break from teaching to be a homemaker, and I felt humiliated. I was constantly reminding myself to be grateful ‘it’s only for 3 months,’ and how lucky I was to have dodged the ‘incurable disease bullet.’ I gave it 110%. The payoff for my misery would be a normal gait and regaining control of my life, and that was a price I was happy to pay!
The torso cast didn’t work. It made me angry and irritable, so it was successful in ruining my sparkling personality short-term, but it didn’t improve my walking one bit. I sank to a place of total despair. I had been led to believe my commitment to the inhumane cast during the summer heat would do the trick. After all, I had been eating all my vegetables and saying my prayers. I was working to be the best mother and wife I could. I didn’t deserve this! I was grief-stricken about the precious months I had missed out on holding my baby. I felt like I was mentally hanging by a thread. At a follow-up appointment, the orthopedist recommended a major spinal fusion as something to try next. I never set foot in his office again. I saw a couple of new doctors and was diagnosed with a couple of new, untreatable things, including a compressed sciatic nerve expected to heal with time and a vitamin deficiency I could cure with a supplement in a hot minute. I was trying really hard to be grateful nothing ‘serious’ was wrong with me, all while my body continued to fail.
A year passed, and the small problem with my leg was becoming a big issue. I began using my arms to lift it out of the car. I could no longer keep a flat dress shoe on my foot, let alone walk in heels. At the recommendation of a family member who is also a doctor, my husband and I traveled to see a ‘big city’ specialist. This particular doctor had the biggest ego of anyone I had ever met and the air of superiority surrounding him was stifling. I was so grateful to be in his presence, though, and he seemed to have all the answers right away. After a brief exam and a NASA-style lumbar MRI, he told me everything looked fine. He declared it to be a mild childbirth nerve injury that would repair itself. His advice that followed, ‘Quit wasting your time in doctor’s offices and go home and take care of your kids.’ I was embarrassed he had brought my idiocy to light again but so glad to hear I was perfectly healthy from such an esteemed professional. (It turns out his words would leave lasting scars. I look back at that moment and remember it as the worst thing anyone has ever said to me).
Upon returning home, I threw myself passionately back into gratitude journaling. I mean, I was just given a clean bill of health and parenting advice! Certainly, if I was grateful enough, if I tried hard enough, if I was a good mother, my body would naturally get back on track, right? I tried to focus on my blessings: healthy kids, happy marriage, red wine, all while minimizing the losses: my favorite Zumba class, my pride, my art, the ability to wear cute shoes. The ‘losses’ column was really adding up.
While trying to pour myself wholly into my young family and ignore the weird way I was walking and feeling, we moved to another state. I continued to get worse, to the point I had to explain myself upon meeting new people: ‘Oh, that. I have a childbirth injury.’ ‘Sorry I can’t walk over to your house, because I have a weak leg.’ Gulp. I wasn’t getting better. I was spending crazy amounts of energy trying to look normal. Without really talking about it, my husband and I started to rearrange our lives to accommodate my walking problem. ‘I’ll pull the car up to the door and let you out’ or ‘Let’s drive the two blocks to the park with the kids,’ he would say. I started shopping online instead of at Target because I couldn’t walk that far. I could no longer push my daughter in her stroller. I was falling apart. Deep down, I remained convinced something was really, really wrong with me. I knew either my body or my mind was failing me, and each day seemed more difficult than the day before. I really didn’t want to, but it was time to visit a neurologist, again.
This time the story was very different. More than 2 years had passed since the onset of what I described as ‘foot slap.’ A new brain/spine MRI and a spinal tap told the full story. The lesions were now seen on the initial MRI that had been done early on (the images had been misinterpreted TWICE), but now they were much more serious. ‘We have confirmed you have MS, and your disease burden is very heavy. Ideally, you would have received treatment earlier,’ I was told. This was certainly not a useful thing to hear. My thoughts were boiling inside my brain again. Ideally, this would never have never happened to me. Ideally, the first radiologist would have been properly trained. Ideally, I would wake up from this nightmare! I had been bracing myself for these words for so long. I thought I would cry more, but I felt numb and I was scared stiff.
In the days and weeks that followed, my emotions erupted. I really did have a case of creeping paralysis, and I was terrified. I spent so much time worrying about what my life would look like as I continued to lose mobility, and praying, somehow, I would continue to be able to walk. I couldn’t imagine a life with legs that didn’t work and I knew MS could take much more than that. In some cases, it can affect nearly every functioning part of your body! The grief and worry consumed me. Many days, I didn’t want to get out of bed, and some days I didn’t. My husband remained by my side, mopped up my endless stream of tears, and supported me through every dark day. The grieving process was horrible, but it was crucial for me to get through it. I had to process what I had already lost, and worry about all of the future possibilities.
Slowly, my fear of the unknown became manageable. I got tired of worrying so much and began to accept the fact my future was uncertain, just as it had been even before my diagnosis. Mentally, I was definitely doing better, but my physical disability continued to steadily worsen in ways that couldn’t be ignored. I was constantly forced to reevaluate my need for mobility aids and medical products usually reserved for the elderly including canes, rollators, crutches, scooters, and dreaded shower chairs. Each mounting struggle was a blow, but I was becoming stronger, more resilient. I started to try and find the joy in life again, even if I had to push a walker to get there.
I never expected what happened next. I slowly adapted to my new life. 9 years later, many of my worst fears about having MS have come to fruition. I can only walk very short distances with a rollator and I use a wheelchair part-time. Despite my limitations, I am truly so happy today. I will always miss dancing and jumping, but I embrace the fact life can be great even without hopscotch. I get up every day with the intention to prioritize what really matters, and obsessing about MS rarely makes the list. My family is beautiful and my children are learning empathy and kindness. My life still is everything I dreamed of years ago, even if my health is a little flaky and my legs are not my best asset.
Most importantly, I have learned to see the humor in it all. Finding the ability to laugh at my daily struggles has been pivotal in helping me reach the place I am in today. I have redirected my attitude towards MS and now I approach it using as much humor and positivity as I can. Today, I am so grateful. Not because I have MS, but because I’ve learned to see past it every day and live my best life in spite of it.”
This story was submitted to Love What Matters by Tara Merrell of Denver, CO. You can follow her journey on Instagram, Facebook, and her blog. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories from MS patients here:
‘I felt the right side of my face go numb. ‘I’m sorry, we found some lesions on your brain.’ At just 20 years old, I was in shock.’: Young woman with multiple sclerosis says ‘I have lots of life left to live’
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