Learning to Accept a New Path
My name is Tesha Taylor, and I wanted to share my MS story. Something that I hope touches and inspires others to live their life to the fullest and set their dreams on fire.
I was 29 when I was diagnosed with MS, three months to the day before my 30th birthday to be exact. I remember my life changing forever in that doctor's office. I remember sitting in the chair as my doctor told me the news, the tears streaming silently down my face in sheets as I struggled to come to terms with the fact that my future was forever changed. I vividly recall the potted plant in the corner, the small rip in the carpet, the pen he was holding, the slightly too cold temperature in the office. I remember his voice but I couldn’t tell you what he said, I was numb to the core—and scared beyond belief. I was frozen in my mind and desperately struggled to comprehend why this happened to me. I left the appointment and drove to work, holding it together in my office for about three minutes before seeing the worried face of my friend, Becky, and falling apart, sobbing that I wasn’t ready for my life to change. I thought everything would feel the same, but in a span of an hour my whole life had changed and everything suddenly looked very different.
Just nine months prior, my engagement had ended and I had called off a wedding—at that time, the hardest thing I thought I would ever have to go through. The pain of losing "that" doesn’t hold a light to being diagnosed with a life-changing disease with no cure. I thought I had gone through more than my fair share of hardship, I didn’t know the true journey was just beginning.
When I was 18, and a junior in college, I suddenly experienced eye pain and loss of vision in my left eye. I chocked it up to stress, it was finals week. After two weeks without the condition improving, I went to the Ophthalmologist. After numerous tests, I was diagnosed with Retrobulbar Neuritis. I was told at the time that I had a 30% chance of developing MS—as this is often a first symptom. A week later, my vision returned and I was back to normal. My life continued and I never thought twice about it again. Although that doubt was always in the back of my mind, the odds were low and I never experienced another symptom. Life simply continued.
Fast forward to May of 2016—and I suddenly lost sensation in my left leg and starting experiencing tingling and symptoms that I couldn’t explain. I remember going for a run and having to stop and turn around because I couldn’t feel my leg, I simply couldn’t differentiate if it was on solid ground or not. I couldn’t walk…and my world crumbled.
After MRIs, test and needles—I found myself in the doctor’s office on June 7th, 2016 to finally hear my neurologist tell me the news that I had dreaded, but somehow knew was coming. To be told you are “sick” is hard, to be hold you are sick with a disease that they can’t explain and that there is no cure for is absolutely devastating. I crawled into a state of depression and anxiety as I grappled with life, death and what was left of my future—that had seemingly just started. Things that I hope most people at 30 will never have to face.
I have an unbelievable support system and incredible friends, but I live alone—states away from my mother, sister and brother and continents away from my father. I spent the first couple of months crying myself to sleep, jolting awake with my heart racing every time I nodded off. The sudden awareness that my life was going to be forever changed. I simply wasn’t ready to accept it. I absorbed myself in my job, just to keep busy enough to not let the fear take over. My family would call me and spend hours giving me whatever solace they could, and the pain I heard in their voices for not being able to “help me” broke my heart even more. The grief in my mother’s voice was the hardest to accept, like the amazing mother she is—she passionately wanted to make me better and take the pain from me. But she couldn’t, no one could.
I have always had an insatiable appetite for travel, I am most at home on the road in remote countries in unknown situations with language barriers and questionable accommodations. My sister Tami and I have made a habit of traveling around the world every opportunity we get. She is my soulmate in every way possible, the only person I can imagine experiencing life with the way we do. My greatest fear was that MS would diminish my ability to travel as I lost control of my body. I would no longer be able to backpack to remote locations, travel without an itinerary, sleep under the stars, dance on faraway beaches and just wing it. This was the loss I feared the most, and this is what I mourned more than anything.
It took my months to go through the stages of grief, and on the one year anniversary of my diagnosis—I found myself on a desolate Greek beach with my sister on one of our whirlwind trips—and it all suddenly clicked. I would NOT let this beat me, I would not let this drag me down. I made a promise to myself to passionately pursue the things that bring me to life while I can, I have one life and I am going to live it. I won’t feel sorry for myself, I won’t let it bring me down or change me. If anything MS has shaken me to my core, but even more it lit a fire and awoke me to a person I didn’t knew existed. I am stronger, I am more compassionate, I am more aware of who I am because I simply fight for the chance to live every day. I don’t take anything for granted, and I learned to let go of things in life that don’t bring me joy, and even more—I have learned to accept the things I cannot change and try to dance gracefully in the ebb and flow of chaos.
As part of my treatment, I take 12 pills a day to manage my symptoms—including my daily Gilenya dose. A powerful immunosuppressant that has brought its own challenges. I know it helps keep my relapses at bay by suppressing my immune system so it doesn’t attack itself, but it also comes with increased risk. I have to wear masks on planes and public places where risk of contamination is high, my common colds turn into pneumonia, I have unbelievable fatigue where it’s all I can do to get out of bed sometimes, I can’t get pregnant…the list goes on. Not to mention the fight with my insurance company, a year-long denial of coverage for the $35,000 annual cost of the drug. However I have learned to sway with the balance, as sometimes you have to sacrifice for the chance to live at all.
I want more than anything to continue traveling as far and as long as I can, with my sister by my side. It is truly the one thing that absolutely brings me to life. I can’t explain the thrill of travel and the desire to absorb myself in every culture I can—like the sun—it simply never fades for me. So for now, through the pain, the fear, the sadness, the sorrow, the laughter, the awareness, I will continue to fight for the moments that make me whole.
MS is overwhelming, and not something I share frequently with those close to me—I have an acute awareness of people not being able to relate to what it feels like, and I don’t push it on them. If I’m having a bad day, you probably won’t know it—I’ve learned to accommodate the feelings of others to simply make it easier—I’ve never wanted to be a burden.
I guess the moral of the story is that I have a million words to explain what MS feels like, emotionally and physically. But I have one word to explain how it has changed me. Grateful. I am GRATEFUL for having found who I am through this journey, some people spend a lifetime searching for that—and it quite literally slapped me in the face and I had to rise to the occasion or fall. Through my hardships I now see the beauty in everything and put everything into perspective.
I dream of nothing more than the ability to continue to quite literally walk my way around the world—and appreciate every single moment of it—because I know it’s fading. If unknown paths and broken dreams are what led me here, then I am utterly grateful for having set it aflame.
The holiday season is among us and can be so stressful! Do you experience more flares during this season?