Yesterday was Sunday, December 1st, 2013. Yesterday was also a great day. I am feeling inspired to write this after finally getting to meet somebody who I can truly call an inspiration. Her name is Courtney Galiano. For those of you who don’t know Courtney, she is 25 years old and is an incredible dancer. She was on “So You Think You Can Dance” and her work includes performing with people like Jennifer Lopez, Selena Gomez, touring with Glee, and much more. She is also an amazing person, whom I connected with on twitter a few months ago. It started with a simple tweet, but for some reason out of the many tweets from the 45k+ fans she most likely receives everyday, she saw mine and followed me. From there I was able to direct message her, and that then progressed to us writing long emails to each other. We were off-and-on in touch from our initial communication with our busy schedules, but I knew that she was coming to Dallas at the end of November/start of December for a dance convention she was teaching at here, and I knew I had to meet her. That’s where we can fast forward to yesterday, the day Courtney and I met. We are a lot more alike than I ever expected before meeting her, but one special bond that we have is that we share the same condition… we both have multiple sclerosis.
Let me back up a little bit and tell you my story. I got my tonsils out in July 2012 and during my recovery, the left side of my body felt pretty numb. I could still walk and feel everything; it was just that the left side of my body felt differently than my right. I informed my parents about this and during my tonsil checkup, told my doctor of this too. My mom’s theory was that it might have been a “freak” thing of them puncturing a nerve during the surgery. We expressed that to my doctor but his theory was that it could have just been from the lack of getting vitamin D from the sun or lack of walking around during my recovery period. He recommended that I wait to see if it goes away in the next few weeks once I am fully recovered. Coincidentally, the numbness that I felt on the left side in my head, arms, and back dissipated probably within a week, but my left leg still did not feel as “normal” as my right one. I would say that the slight numbness in my leg lasted for a month or two longer after I first recognized the symptom, but I didn’t think anymore of it because it wasn’t tingling, and I was still able to work out, run a lot, and be as active as I wanted without any concerning problems.
3 months after (from what I would now come to know as having my first episode) my entire body felt as if everything was completely back to normal. Everything was all-good until about late February, when I noticed the same numbing sensation in my left leg that I had felt after I got my tonsils out. I had a greater intuition this time around that something more concerning was up. I looked into the possible causes of “numbness in leg”, since that was the only symptom I was feeling. Of course, MS came up, but I was too fearful to even think that is what could be wrong with me, especially because I had no earthly idea what MS really was. I mentioned it to my parents too, but they disregarded it, because they didn’t want to “go there” either. My mom instinctively stuck to her theory that it was probably just a pinched-nerve.
After mentioning my symptoms on two separate occasions, they decided to schedule me with an internist to have a good physical exam, but it took me a month to get in. Within that month, the tingling sensation in my leg had once again dissipated, but I began feeling a weird sensation on the right back side of my throat, tongue, and cheek. It felt as if I was experiencing getting a shot from the dentist that had almost worn off. When I finally went to the internist with my mom on April 8, I explained the symptoms I had previously experienced, but “passed” every test he had me do. He explained to me that, “he thinks everything is fine, but just for my peace of mind, I could go get an MRI”. I had scheduled to get an MRI 3 days later, and my internist said to me that when he gets the results back that day, he would just be emailing me because everything was going to be fine.
I remember it like it was yesterday… April 11th, 2013 around 3:00 pm. I was at work, when I got a call from an unknown number. I was hesitant to answer, but did. It was the doctor’s office asking if I was able to come back into the office to go over my MRI results. My heart dropped, because I vividly remember the doctor saying, “I will just email you the results if everything is fine”. I left work early that day, and headed over to the doctor’s office, alone. I was scared. I didn’t tell my mom that they had called me, because I like to think I am a pretty tough person, and I didn’t want her to worry. I also didn’t want her in the room with me if they were to deliver bad news because I know my mom would have cried sooner than me, and I lose it when I see her cry.
I waited in the office for about 10 minutes before the doctor came in. At this point, my heart was pounding, and I took a big gulp. His first words were straight and to the point, “unfortunately I have some bad news”… just as I had anticipated, still, I wasn’t fully prepared to hear that. He explained to me that they did find some lesions in my brain, and went over the MRI report with me. The impression of that MRI report stated: “Pronounced white matter signal changes for age in a pattern consistent with multiple sclerosis. Several lesions show evidence of enhancement, consistent with active demyelination.” Half way into him explaining everything to me, I broke down, mainly because I didn’t have my mom there with me. It is times like these, where all you want is your mom by your side.
After going home that evening and telling my parents the news, letting them ‘feel this’ and cry, having it all sink in, and sleeping on it for a few days, the next step was to see a neurologist about a week later. I went to him twice, the first time for him to confirm the MRI results (even though again, I “passed” all of the balance/walking/strength tests he had me do), and to explain what the next step would be (as far as what medicine I’d do research on and choose to take). The second time seeing him is when we discussed my medicine. We agreed on Copaxone, an “auto-inject” shot that I have to give myself once a day in the morning. I’ve been on this for 7 months now, and so far, so good.
As you can see, on the outside, you would never expect anything is wrong with me. I think that is where the hesitance of wanting to tell anyone, even my best friends since I was born, factored in. I figured, ‘why do I need to tell them when I’m going to be fine and when they can’t physically see anything wrong with me?’ I was also so hesitant sharing it because this auto-immune disease is completely different in every person, and I didn’t want to be looked at any differently than the girl they knew up until about 5 minutes ago.
However, it was after speaking with Courtney that struck a cord in me, and the reason why I am writing this today. After talking with her yesterday, she asked me if I was open about it. I told her I could be a lot more open. Well, this is about as open as I can get. I am currently an event planner, but I graduated from the University of Arizona as an education major. Coincidentally, Courtney was also going to school go get her education degree, but stopped a semester early to audition for So You Think You Can Dance. While I will always love kids, people constantly ask me why I’m not teaching. I still don’t have a definite answer for that, but I am starting to believe that perhaps my purpose is to use my skills to educate people on what MS is. I want to be more like Courtney, open and honest about who I am, and get involved as much as possible with raising money in order to find a cure one day.
For the first time ever yesterday, I felt a sense of wholeness when Courtney introduced me to her friends and family. She said, “This is my friend Taylor!” Then enthusiastically followed it up with, “She’s my fellow MS-er!” I didn’t feel embarrassed or ashamed in that moment (to which prior to this I may have), because the people who surround her are more educated and still see the great and pro-active person that she is, without having one ounce of judgment about it. I can only hope to educate and surround myself with as great of a support system as Courtney has. She has so much energy and is hilarious, and has a great attitude about life; much like two other people she introduced me to yesterday: Kirsten, a mom to one of the dancers at the convention Courtney was teaching at and who was diagnosed with MS 20+ years ago, and 20-year old Mitchell, who was diagnosed when he was 15. It was an overwhelmingly awesome experience getting to meet these amazing people. While I am still pretty new to all of this, I know with having the positive outlook on life that they have, that everything is going to be okay. I am still the same person you’ve known all along; I work. I still go out and have fun. I still play sports. I still run around with kids. I still crack stupid jokes. Nothing has changed on the outside, maybe a little on the inside, but not on the outside. But most importantly, for now, I feel great.
I’d just like to say again to Courtney Galiano… thank you for everything, for being such a great inspiration and role model to so many people. I am so glad we got to meet and am thankful to have gained a new lifelong friend. If it wasn’t for you and your brother Vinny, I honestly don’t think I would have had the courage to ever share my story. Not only are you two some of the nicest people, but day by day I’m learning how incredibly big your hearts are. It really is infectious and makes me want to do more good in this lifetime… to make a positive impact. I’d like to conclude by borrowing a quote that Courtney tweeted one year after her being diagnosed, (but altering it a bit to better fit my story). It reads, “(8 months) ago I was diagnosed with MS. My life changed, I have weak moments and big fears but I always try to stay positive and remember it could always, always be worse. I have remarkable people in my life and for that I am extremely thankful. The mind is truly a powerful place and I have learned so much in the past (8 months). You are so much stronger than you think. Now with all that being said…MS… you’re still my bitch.”
FEELING INSPIRED? THEN JOIN ME IN THE SEARCH FOR A CURE: http://main.nationalmssociety.org/goto/TeamTayRo