“Your lumbar puncture tested positive for Multiple Sclerosis.” Words no one ever wants to hear. In that moment, my whole world came crashing down around me. This must be a mistake…I can’t have MS…I’m a mom, a business owner, a teacher…I have a long life to live and lots of things to do…this must be wrong. These thoughts clouded my brain as I sobbed and wailed in the car. I, as many others do, assumed the absolute worst. It was a dark, dark day on September 23, 2016.
The first hint of MS appeared in November of 2009 when I lost the vision in my left eye. After an MRI of my brain, my neurologist labeled it as Optic Neuritis. He did tell me that it could be an indicator of MS, but at that time, I had no other symptoms, and it appeared to be idiopathic. We treated it with three days of IV steroids, and thankfully, I eventually regained full vision, and today my eyesight is 20/20.
Although it was very frightening to lose the vision in my eye, I didn’t allow myself to be consumed with all the “what if” thoughts. I had a two year old son at the time, I was a year into running my own business, and so life went on.
Fast forward to February 2016. I’m going to be honest…this part is really difficult for me to talk about. I’ve avoided re-visiting this time in my life for over three years because it was that traumatizing for me. My head knows my memories can’t hurt me, but my heart is still so afraid. However, it’s time to face the memories that I have stuffed way back into the dark corners of my mind. It’s time to bring them into the light and to tell them that I’m the boss here, and that they have no power over me. It’s easier said than done as I am typing this with tears streaming down my face.
I remember being tired, really, really tired. I was working long hours and wasn’t taking care of myself. I woke up one morning and when I stood up after getting out of bed, I noticed that my right big toe didn’t feel right. I didn’t really pay attention to it and went about my morning. I don’t remember the exact time line of events after that morning. I do remember the weird feeling in my right big toe spreading to other toes, and then up through my ankles. Then the weird feeling started at my waist and began working its way down through my pelvis and thighs, eventually meeting up with the weird feeling spreading upwards from my toes. I was terrified. I had consulted with a chiropractor when I first noticed the odd sensation thinking that it may have been stemming from my back. Now, I knew in my gut that something was very wrong.
I called my mom and told her I needed to go to the ER. After being in the ER overnight, with no testing being done, and basically being dismissed by the ER doctor with him saying, “It’s probably stemming from your back.” I was sent home with no answers. Thankfully, the following day, I had a routine visit with my primary care doctor already scheduled. The minute I saw her and explained what was going on, she said I needed to see a neurologist before leaving the office. Tired and terrified, I began to cry. I told her I only wanted to see the neurologist I had seen back in 2009 for my eye. She told me that would be impossible as he is the head of neurology and it could take weeks or even months to get an appointment with him. She left to go make a phone call to get me an appointment, and when she came back, she said, “You’re never going to believe this, but guess who just had a cancellation and who can see you right now?” I was so relieved because I knew I was going to be in the best possible care with my neurologist from 2009.
After consulting with my neurologist and speaking about the possibility of MS, he told me I would need MRIs of my brain and my spine. We started three days of IV steroids that day to start to address the inflammation. The days that followed were dark, scary, and lonely. I had the MRIs, and the results showed one small lesion in my thoracic spine, but no brain lesions. My neurologist told me that the only definitive way to diagnosis MS is with a lumbar puncture. I told him I wasn’t ready to face that yet. I wanted to give myself time to heal and to get back to 100% before proceeding with any further testing. My amazing doctor agreed to my desired plan.
February and March of 2016 were really tough months for me. I told myself everyday that I would heal, that I would feel better…I would literally talk to my body and I visualized the lesion in my spine getting smaller and smaller until it was gone. I never, for a second, allowed myself to think that there would be any other outcome to this situation.
I don’t know how I would have gotten through it without the love and support of my incredible mom, dad, sister, and my son Charlie. At the time, Charlie was eight years old, but this kid was my rock. It broke my heart to have him witness me going through this, but he was so amazing. He believed I would heal and get better, and because of him, I believed it too. He would unwind a paperclip, and gently touch the pointed end on my toes asking, “Can you feel that mom?” It broke my heart every time I had to tell him “no”, but eventually my answer turned to “a little bit”, and then to “yes”! Charlie would have me go outside with him while he was shooting hoops and would encourage me to play, cheering me on even if all I could do was throw the ball to him. I was so determined to get better for him. My sweet boy needed me. He needed me to shoot hoops, chase him around the yard, and play baseball. He needed to feel safe and comforted by his mom, not scared and unsure. So, I dug deep and I smiled even though I felt like crying and I went outside to shoot hoops with him even though I wanted to sit inside and feel sorry for myself. I became strong because Charlie needed me to be strong.
I don’t remember the exact timeline, but I do remember the day I started to regain full feeling in some of my toes. I remember feeling like my toes were free and the rest of my leg was still bound up in the numbness. I told my body that the rest of it would feel free soon, that the healing was starting in my toes right where that weird feeling had all begun a few weeks earlier. It was probably around the middle of March when I regained full feeling. I was so grateful. Deeply grateful. There are no words to describe just how grateful I was. I was able to return to my full time teaching schedule in April. I was tired and still required lots of rest and I was careful about how I spent my energy, but I could FEEL!!! We did it! My body and I had healed and I have no doubt in my mind it was because of the loving care and the motivation from my Charlie. My sister was getting married in May and that had been part of my motivation as well. I was going to be the best Matron of Honor for her, I was going to walk down that aisle, and sing, and dance, and celebrate…and I did!
Fast forward again to September. I had, thankfully, been feeling well since my recovery, but the possibility of MS always lingered in the back of my mind. I wondered if I was being irresponsible as a mom to avoid either ruling it out or diagnosing it. I ultimately decided to have my neurologist do the lumbar puncture that month. The lumbar puncture was actually no big deal for me. It was the waiting that followed that was agonizing.
My dad and I were on our way to a rehearsal in NYC and we were on the West Side Highway. I was mindlessly scrolling through Facebook to try and avoid paying attention to my dad’s driving (sorry, Dad!). I came across an article posted by Forks Over Knives entitled ” From Doctor to MS Patient and Back”. I saved the article, but thought, “I’m not going to have to read that because I don’t have MS.” A couple of minutes later, my phone rang, and it was my neurologist with the lumbar puncture results. Apparently, I would need to read that article.
My whole world fell apart in the moments following that phone call. I couldn’t even hear my doctor over my sobbing. He gave me his cell phone number, and told me to take some time, and to call him back when I felt ready. Eventually, I called him back. He explained to me that there’s a whole spectrum for MS and that I was at the very mild end. I remember him saying, “Even though it might feel like it right now, this is not the end of the world.” I didn’t believe him.
A day or two later, I found the article I had saved on Facebook and read part of the story of the amazing Dr. Saray Stancic. After learning that her office was located only forty minutes from where I live, I decided to call her to set up an appointment.
October 4, 2016 was the day I met with Dr. Stancic, and that day my whole life changed for the better. Dr. Stancic listened to my story, gave me a physical, and looked through all of my previous medical records. She shared her story, she gave me hope, she educated me about what I could do to take control of my health. In all honesty, I was forced to face the brutal reality that day that I had been avoiding for a long time. You see, I was obese, on high blood pressure meds, and pre-diabetic (which no other doctor had ever told me in spite of the fact that my blood work clearly showed it). I was also a person who was hiding a lot behind her smile. I was miserable in my personal life and under constant stress. There was a lot that needed to change. Dr. Stancic told me during that first appointment that one day I would thank my MS. Not only did I think she might be a little crazy, I didn’t believe her.
Now, three years after first meeting with Dr. Stancic, I can say with confidence that she was 100% correct. So much has changed since that day I met with her. After our first meeting, I became vegan. As in that day…I walked into her office terribly unhealthy, a dairy addict and sometimes meat eater, terrified of my diagnosis, and devastated and hopeless. I walked out of her office armed with knowledge, a brand new vegan, a little less terrified of my diagnosis, and full of hope. That day I gave up everything that I had known for the past 40 years and started on my new path. My new path was led by adopting Lifestyle Medicine which includes plant-based eating, sleep health, exercise, and stress reduction. I won’t lie, it was tough at first, but having an amazing mom who said, “You can’t do this alone,” and jumping on the vegan bandwagon with me made it that much easier.
As time went on, I saw the pounds flying off my body, I slept better, I smiled more, I had way more energy than ever before, and I lived very, very gratefully. It wasn’t all sunshine and roses though, because I was also wrought with anxiety and panic attacks. Very few people knew this, but I had dark, dark days…months. I was constantly worried about the “what ifs”. I was living in fear and it was really dragging me down. The panic attacks were so scary; I wouldn’t wish them on anyone. I really had to dig deep to get myself out of the darkness that I had spiraled down into. It was some of the toughest work of my life. It broke my heart that Charlie had seen his mom completely fall apart…unravel right before his eyes, but it broke my heart even more that one time, he was the one to pick me up off the floor, to take me to the bathroom, to wash my face, and to say, “It’s ok, mom, you’re ok. Take some deep breaths,” while gently rubbing my back the way I would do to him when he was upset.
I decided right then and there that it would never happen again. I needed to get control of my emotions and to be the mom he needed me to be. I needed to live in the present. By living in the past, in my fears, in my dark memories, I was only hurting myself and my son. That was enough. I had hit rock bottom, and the only way out was up. It wasn’t a quick process; I couldn’t just snap out of it. Eventually, the darkness became smaller and smaller and the light came. I needed to make some really hard decisions in order to preserve my mental well-being, my physical health, and the well-being of my son. I needed to let go of a situation that was preventing me from living my best life. It was one of the hardest things I have ever had to do, but I have learned that I need to do whatever it takes to maintain my health.
This journey has been an unexpected one, but isn’t that what life is all about? I have learned that life is messy and that everyone we meet has their own story going on that we know nothing about. I have learned that we are stronger than we think and that we can do anything we put our minds to. As Sheryl Sandburg says, “Resilience is a muscle”! I can say with confidence that the past three years have built my resilience muscle.
My MS diagnosis has provided me with amazing opportunities to share my story. I am honored to be a part of the documentary, “code blue”, and to be able to share part of my story through that medium, and I was thrilled to be asked to attend P-POD (the Plant-Based Prevention of Disease Conference) in Raleigh, NC this past April to attend the screening of “code blue’ there, and to speak to the attendees which included doctors, nurses, and others in the medical field. I receive messages all the time from people who are interested in learning more about Lifestyle Medicine and all of its benefits, and I am thrilled to be able to share with them all that I have learned.
Three years post-diagnosis, I am down 70lbs, I am off of a blood pressure medicine, I am currently managing my MS with Lifestyle Medicine and remain asymptomatic, and I am living in the present. I remain grateful every, single day for things big and small. One of the most important lessons I’ve learned is to just keep breathing. It sounds so simple, but when you are in the darkness, taking the next breath can be so, so hard. Just take a breath, and then another breath, and then another after that. For me, living in the past creates fear, and living in the future creates anxiety. If I take a breath and live in the moment, I remember how good I have it, and how blessed I am to be where I am today. Take the next breath, friends, and if that’s all you can do for today, that’s good enough. Persevere, lean on family and friends, believe, hope, and never, ever give up.
Today, can I thank my MS the way Dr. Stancic told me I would three years ago? I can’t believe I am saying this, but yes, I can. It’s ironic to say, but I am much healthier post-diagnosis than I was pre- diagnosis. Not only am I healthier physically, but also emotionally, and it’s because of my diagnosis. My MS diagnosis was what caused me to take a good look at myself and my life, and to make the drastic changes that needed to be made. I am not the same Kelly that I used to be…I am a better version of myself, and I am a work in progress.
So, thank you, MS. Thank you for making me stronger, thank you for making me braver, thank you for making me healthier, thank you for making me more resilient. I still hope and pray that in my lifetime, there will be a cure, and I can thank you one more time, and send you on your way, but for now, thank you. I get it now. I get beyond a shadow of a doubt that nothing is more important than my health.
I made a promise to myself to live every day gratefully, and to take care of myself so that I can live a long, happy, healthy life being Charlie’s mom because that’s my most important job, after all.