Chapter 9: Brittany

Brittany My name is Brittany Jackson. I am 26 years old. I was diagnosed with Multiple Sclerosis in August 2011. To date, I have been lucky because although I experience relapses, I am without any debilitating symptoms.

With support, faith, and medication, I have learned how to manage my fight with MS. I have decided to live more and fear MS less. However, if you had asked me in 2011 what life was like, I would have cried you an entire river while explaining how unfair life was. It’s funny how things change. Thank you for allowing me to share my story with you!

Although it has only been three years since I was diagnosed with Multiple Sclerosis (MS), life before MS seems like FOREVER ago. If I had to think of one word to describe my life before MS, it would be BUSY. In 2009 I was a senior at the University of Maryland (Go Terps!). In addition to being a full-time student majoring in Public Relations and carrying a 3.8 GPA, I had a part-time internship, worked part-time as a dance instructor, was the president of my college dance team and was preparing to represent my school at the esteemed Bateman Competition

(a national public relations case study competition for college students).

I thrived on having a full schedule and always had something to do. I did not believe in resting or having a “chillâ€? day‌I had to be moving at all times. I repeat, ALL TIMES!

Dance is my life! I have been dancing since I was three years old.

Growing up, I trained in tap, jazz, ballet, lyrical and hip-hop. I competed locally and nationally from the time I was 6 until I was 16. I was captain

of the pom-pom/ dance team in high school and president of my dance team in college. I am currently a choreographer of a competitive dance troupe for students ages 5 – 16. Of all the genres I have studied, tap is my absolute favorite. I often refer to it as my first love. No matter where I am or what I am doing, if there is music playing, I am tapping.

Around December 2009, I started to suffer from migraines. I started getting them once a week, which increased to twice a week, and then to

every other day. By January 2010, I was dealing with migraines on a daily basis. I did not want to do anything except lay in bed all day, every day.

The same girl who liked to rip and run EVERY SINGLE DAY, was willingly spending days in bed. After a month of these symptoms, my doctor recommended I get a brain MRI. I had never gotten an MRI before and didn’t know what the process was like. I was nervous, but my doctor informed me that if something was wrong with my report, she would contact me. Normally, when a doctor says “no news is good news”, I am

happy to not hear from them – but for whatever reason, this time I knew there was some news to be told.

I hassled my doctor for my results. She assured me repeatedly there was nothing wrong with my MRI, but something in me did not believe that. On March 5, 2010, I decided to go down to the radiology center myself and asked for a copy of my report. The report revealed there were three lesions on my brain and the possibility for a multiple sclerosis

diagnosis. I had no idea what multiple sclerosis was at the time. When I thought of MS, all I thought about was people not being able to walk.

Because I am a hard-core dancer, the thought of not being able to walk was terrifying. It was not only a hard pill for me to swallow, but it was a tough pill for my parents to swallow as well, especially my daddy. Dad didn’t sleep at all the night I received my results; I could tell he was more scared than I was.

The next day, my parents and I met with a neurologist – let’s call him Dr. #1. He was a very frank older man who completely wrote off the possibility of MS. The doctor said I was too healthy, too active and too young to have MS, which were my sentiments exactly. This was a huge relief. I didn’t have MS. I could dance forever. Life was good.

Throughout 2010, I experienced abnormal tingling and numbing sensations in my legs and feet. This eventually led to more discussions

with more doctors about the possibility of MS. I received numerous MRIs and went through so many physical examinations – all of which maintained that I did not have MS. Eventually, I found my way to the neurology department at John Hopkins, where I met a neurologist – let’s call him Dr. #2, who recommended that I get a spinal tap to put the MS rumors to bed once and for all. To date, my first spinal tap (yes, I had more than one) was one of the most painful experiences of my life.

Nonetheless, the spinal tap came back negative for MS. I had dodged that bullet once again!

In May 2011, my migraines came back with vengeance! Dr. #2 recommended I get another MRI just to be safe. On May 5, I had another brain MRI done. A week later, I received a call at work from Dr. #2 explaining that my latest MRI revealed four new lesions on my brain (for a total of seven) and that he was ready to move forward with an official Multiple Sclerosis diagnosis and wanted to begin treatment. This was the same doctor who had just told me in December that I did not have MS.

THE SAME DOCTOR! I decided he was wrong. I wasn’t ready to move forward with a diagnosis or treatment. I needed a second opinion.

I decided to go back to my first neurologist, Dr. #1 – you know, the one who told me I was too healthy, too active and too young to have MS. Surely, he would be on my side. I took my latest MRI film and reported to him, hoping that he would have something different to say. I needed him to have something different to say. At this point, I still don’t even really

know what MS was. I just know I couldn’t have it because I am a dancer and dancers can’t have that. He reviewed the film in silence for a while. “I agree with Dr. #2,” he says. I was devastated. How could it be that both of these doctors who were so sure that I did not have MS, were now telling me that I had MS?

Guess what? I still did not believe them. I did not have MS. I needed a THIRD opinion.

In June 2011, I found my way to the National Institute of Health (NIH).

Third time’s a charm, right? NIH prepared a rigorous 3 month diagnosis plan for me – which included multiple MRIs, physical exams, blood tests and oh yea, ANOTHER spinal tap. If I received a positive diagnosis after all of this, I would accept it.

In the midst of all the testing business, I remember sitting downstairs and talking with my daddy one night. He started asking me if

I had been doing research on the medications and reading any of the literature I had received on MS and I just busted out crying. I had not been reading anything. I did not want to read anything. I did not have MS. I did not want to have MS. In that moment, it all became very real to me. I could actually have this disease. What did that mean though? Did it mean that I would no longer be able to dance? Did it mean that I would never be able to achieve my lifelong dream of owning a dance studio?

Did it mean I would be in pain all the time? Did it mean that my busy life was over? I sat on my daddy’s lap and cried for what seemed like forever

that night. Everything I had held in since I got that life changing call in May spilled out. My daddy consoled me and assured me that everything would be alright and that he would be there with me through everything. And at that moment, that was enough to make it alright.

On August 25, 2011, I received my second spinal tap. It was much easier the second time around. A week later, NIH confirmed the spinal tap came back positive for Multiple Sclerosis. What a devastating blow.

Although my parents had been mentally preparing themselves for this news, I could tell they were devastated, too. We were all praying for a different answer.

There was no way NIH could be wrong too, right? Part of me still wasn’t ready to accept it. And because I wasn’t ready to accept, I wasn’t ready to live like I had MS. The doctors all knew about my busy lifestyle and warned me about the importance of getting rest. They all warned

me against overworking myself and informed me that stress could trigger symptoms and lead to a relapse (anytime symptoms last longer than 24 hours). But I was adamant about not letting MS change me. I pushed myself to the max every day after that. I never slowed down one bit. I didn’t even tell anyone other than my close friends and family. I didn’t want anyone to look at me and see that hideous MS label on me.

No way, no how.

December 3, 2011 was the start of my first relapse. I had this strong burning sensation in my right arm. My right arm was weak, and it felt like it weighed a ton. Eventually, the pain became so bad that I couldn’t sleep at night. I could barely use my right arm. To do the simplest taskssuch as opening a door or picking up a piece of paper- required so much effort. I was completely miserable and exhausted. This was it. I really had this disease.

On the fourteenth day of this torture, the fourteenth day of not being able to fully use my right arm, the fourteenth day of not sleeping, I finally decided it was time to ask for help. I called Dr.#2 and told him what was going on. Later that evening, a nurse from Johns Hopkins arrived at my house, inserted an IV port into my arm and set up an IV stand in my bedroom. For the next five days, I would be hooked up to an IV station in my own bedroom. I was responsible for cleaning out my IV port, hooking myself up to and disconnecting myself from the IV and changing the IV bags. It was during these five days that I came to grips

with the fact that I had MS; that my life would forever be changed. After this episode, I decided it was time to begin medication (which I had been so strongly against up until this incident).

In January 2012, I made the decision to begin treatment. This would require me to give injections to myself once a week. If you were to ask anyone who knows me what my second biggest fear is, they would say NEEDLES (spiders have the number one spot on lock). Every time I even

talked about having to give myself injections, I would cry. The idea of having to give myself injections weekly was just the worst thing ever.

One day in January, a nurse from Johns Hopkins came to my house to teach me how to give myself the injections. We injected a fake leg with water for like an hour before it became time for me to inject myself. I cried like a baby! My daddy even asked if I wanted him to inject himself first to show me everything would be okay. (I am not sure if I mentioned

this already, but I am a big time Daddy’s girl – you may have already picked up on this!) Finally, I calmed down and stopped crying. It was time to face my fears. I took needle and jabbed in into my thigh. I guess it wasn’t so bad after all! Of course, I cried again, but these weren’t sad tears or scared tears. These were tears of joy. I did it! I faced my fears! I was ready to take this MS thing on.

2012 was a tough year for me. I struggled with giving myself injections. My MS medication was causing me to feel sick regularly and I suffered from frequent relapses. I felt like MS was kicking my ass, but couldn’t let anyone know that. Everyone knows me as this tough, strongwilled, never back down type of woman. I couldn’t let anyone know I was hurting. I made such an effort to hide my pain and frustration from everyone, but I was struggling. I cried a lot when I was alone – I would cry in the car, in the shower, in my room at night. I knew I could have talked to my family and friends about it, but I didn’t want to. All anyone would

tell me is “everything is going to be okay” and “things will get better.” But everything was not going to be okay and everything was not going to get better. Life as I had known it was over and no matter how hard I tried to deny it or fight it, things would never be the same again. I was angry. I felt like this was totally unfair. I went to church regularly and I prayed daily – why would God allow this to happen to me? Why would He want me to be in pain all the time? What had I done to deserve something like this? I was just so angry.

I went through a small bout of depression in the summer of 2012 and had to take leave from work. My doctor prescribed me an antidepressant and referred me to a therapist. I only had one session with the therapist. Sometime during that session, I snapped out of it. I heard myself talking to the doctor and thought, “who is this person?” Why was I letting this MS thing have so much power over me? I am a very determined, STUBBORN, opinionated, hard-working young woman; there was no reason for me to be sitting in this man’s office crying about how unfair life was. I was strong enough to handle this. That’s why God

gave me this disease. He knew I was strong enough. He knew I could be an inspiration to someone else fighting the same battle. He knew this would make me stronger. And let me tell you, I am so much stronger.

That day, I walked out of that therapist’s office and decided I would never allow MS to bring me to such a low place again. That day, I vowed I would never allow myself to feel defeated or give up on myself. It was my turn to kick some MS ass; and I haven’t looked back since.

Today, I still struggle with the pain. There have been times where I’ve had to be on a steroid cocktail of 24 pills a day to stop the pain. There are days where I don’t have the energy or strength to get out of bed. There are days that I cry out of frustration, but there is never a day that I feel like MS is winning. There is never a day that I feel defeated. I still live a super busy life - I currently work full time, am a part-time graduate student at Georgetown University and I still teach dance part-time (yes, I am still dancing). I still thrive on having a completely full schedule, but I do recognize the importance of downtime now.

Being diagnosed with an incurable disease is definitely a game changer. It forced me to change my entire perspective on life. I was reminded that life is so precious. Every day is truly a gift that should be valued and not taken for granted. I have learned not to sweat the small stuff and am constantly readjusting my focus to become the best person I can possibly be. Things that used to seem SO IMPORTANT just don’t seem important anymore. You know what is important? – God, family,

friends, creating moments that you will never forget, laughter and happiness.

If I could go back in time and talk to that devastated 23 year old version of me, I would tell her: “Everything really is going to be okay. I know you are scared right now, but you are so much stronger than you think you are. You have no idea how strong you are. It is okay to cry. It is okay to ask for help. It is okay to not be okay. This does not mean you are

weak. It means you are human. You are so loved and do not have to go through this alone. You cannot do it all alone. God is not punishing or abandoning you. He is using you to fulfill a much bigger purpose. It won’t all make sense right now, but one day it will. Take it one day at a time.

You will find your way. I am so proud of you. I love you.�

I am so thankful for my family and friends who have been there with me every step of the way. My daddy held my hand through both spinal

taps and still has not missed a single appointment. My mom is always there to give me the words of encouragement and inspiration to get me back on track and focused on my bad days. My little sister is always there to give me a pep talk and remind me that I am in the control of this MS thing, not the other way around. My friends have been incredibly supportive and are always there if I need to vent or cry and are always willing to substitute a girls night out for a sleepover if I need to rest.

Because of my diagnosis, I am much stronger physically, emotionally, mentally and spiritually. I have had young women reach out to me on social media to ask about my story and how I manage to remain so positive through it all. I know this was God’s purpose for me. He needed me to be an example to other young women who may feel like they can’t do it. I will continue to uplift, support and comfort others who have been diagnosed with this disease. Hopefully one day a cure will be found and no one will have to say they have MS. In the meantime, I will continue to kick some MS ass!