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Life is full of surprises, you have to open them hoping for the very best
I have always believed everything happens for a reason, Illnesses, love and death all happen to test our strength, I have never believed anything happens by chance or by luck. Until one morning in June 2011, I woke up and got out of bed to begin my daily routine. The minute I put my feet on the floor something was unusual, I couldn’t feel my feet on the ground. I thought maybe I had slept awkwardly and it would go away as the day went on, so I never thought of bringing it to anyone’s attention. As I walked around school, the numbness didn’t go away, and as the day progressed so did the numbness. It wasn’t until later that night I felt the numbness slowly crawl up my body. Within hours it reached my waist.
I started to get worried and told my mom what had been going on with me, that day. My mom took me next door to our neighbor who is an ER doctor at the Medical Center. He asked us if we knew what Multiple Sclerosis is. My mom had heard of it but didn’t know the details. Me on the other hand, I had no clue. I thought MS was just something that would happen one time, so everything he said went in one ear and out the other. He told me if the numbness went past my chest I would have to go to the ER immediately. And so it did within the next two hours.
By the time I reached the ER the numbness had spread throughout my whole body except for my face. I was seen immediately. The doctors asked me numerous questions and there was a point where I was asking myself “is this really happening? Am I going crazy?” After several hours in the ER they scheduled an MRI and an appointment with a pediatric neurologist at the hospital for the next day. I went to my follow up appointment and did the same physical examination I was doing in the ER. As my mom and I were leaving the hospital, the doctor came out and asked my mom for a contact number which he later called to tell her I could possibly have Multiple Sclerosis. While waiting for a more definitive diagnosis, my mom and doctors kept the reality of my situation from me. Finally my mom had to tell me the truth, because my dad was on a flight from Kuwait.
That scared me. I knew the situation had to be serious because my dad was on his way to the States. I started to Google and YouTube Multiple Sclerosis, even though my parents and doctors had told me not to. And that’s when I came acrossed Montel Williams YouTube videos. I saw how emotional yet optimistic he is about having MS and that inspired me. The beginning of my diagnoses was the most challenging and vital experience I have ever experienced in my life. I felt I had to hide my emotions from my family and friends, to pretend that everything was O.K. and I was going to get through this. But as much as I tried to convince myself, let alone the people around me, I knew the truth. I had no idea what to do. Everything had been going great. I had just been nominated as DECA president and was becoming a senior and getting ready for college. I had everything planned. Then something was taken away from me.
Predicting the unpredictable
During my diagnoses, the only time I had to myself was when I went to bed at night. That was when I let out my emotions; that was the only time I felt that I could. So I would cry myself to sleep every night and even have nightmares. In one dream I remember particularly, I was trying to park my new car in a side parking lot. My car had no brakes and whenever it stopped, it would be in half of the regular parking spot and half in the handicapped parking spot. I would get frustrated. After attempting several times to park my car in the regular parking spot, it finally stopped. When I got out of the car to look, it was parked perfectly in the handicapped parking spot. I woke up and was convinced that one day I would wake up and not only not be able to feel my legs but not be able to use them either.
Going to school the last two weeks of the year in spring 2011 was hard and waking up was even harder. I was so drained and worn-out. Every hour of the day, all I could think of was sleeping. I remember taking my French II final. I had to write a paragraph in French, and I remember thinking there is no way I’m going to get through it. I could barely keep my eyes open for two seconds. So I wrote every word I knew in French, even if they didn’t make sense. As soon I finished, I put my head on the desk and fell asleep. I literally had no energy to get me through the day.
I was devastated and saddened that something like this could happen to me.
In the past, every time I had to fill out paper work of some sort, like a field trip form, I would skip the lines where I had to fill in an illness, tear off that part and hand it in because I had no use for it. And I would always say, “Alhamdulillah”, which means praise, be to Allah. This Arabic phrase is said in thanks to God. I would often say it repeatedly because, I was so thankful for my health. To this day, I ask why me. I always thought that it wasn’t fair. I’m only seventeen; my life hasn’t even started yet. But I started to think of how Montel had overcome his darkest moments of the disease, and I see how emotional he still got no matter how much he had talked about it publicly. He made me see that it is O.K. to show my emotions, that it is normal, when all this time I have kept my agony and sorrow away from everybody, even my family. I had let my pain and fear of the disease build and build until I felt like I wanted to explode.
I was admitted to the hospital for further testing in June 2011, after my symptoms that lead me to the ER earlier that month. When my first MRI was shown to me while I was in the hospital, I had over thirty lesions on my brain and more than five on my spinal cord. The neurologist recommended that I take another MRI in October to confirm the diagnosis of Multiple Sclerosis. So five months later I took my second MRI. When I went in to view the images with my doctor, I was formally diagnosed with Multiple Sclerosis, a disease of the immune system. In MS the immune system is very active and may be seeing its own nervous components as foreign and starts attacking them. The second MRI showed more than ten new lesions on my brain plus two holes where the sheath was completely damaged, which confirmed that my immune system was attacking my central nervous system. I was then given a list of injectable medications, and had to decide for myself what was best for me. Having a phobia of needles was no option for me anymore. I didn’t start getting depressed until I had to inject myself every day. Seeing a therapist to help me with my phobia of needles didn’t help either. It was so easy for people to tell me that it’s O.K. and that I would get over it, because they weren’t the ones having to go through it. It was hard finding somebody I could talk to because sometimes I just wanted someone to listen. My depression started showing more and more, even though everyone expected me to move on. They didn’t understand that I needed time to grieve. The one thing that kept me going was knowing there was a reason MS had chosen me.
I was taken to the ER last November because I started to have trouble walking and doubled vision. The doctors at the hospital told my family that as long as I could walk and see that they wouldn’t be able to treat me with IV steroids. My parents weren’t satisfied with the treatment I was getting and decided that it was time for me to see a specialist. Although I had a great team of doctors, they just weren’t the right doctors for me. I was being used as a case study and my parents knew that I needed a physician who will care for me on a long-term basis. In December 2011, a MS specialist informed me that my stage of MS was misdiagnosed and Copaxone (daily injections) was too weak for my case of MS. I was no longer relapse remitting but primary progressive. The MS specialist took action immediately and put me on IV steroids for three days. Three weeks later I started Tysabri. Even though Tysabri is a chemotherapy agent and is more aggressive, I felt relieved because I only have to take it every 28 days at the infusion center and I don’t have to inject myself every day. It is hard to determine what my future is going to look like, let alone with MS. It is said that 20% of those who are on medication will do well with their disease. The problem is determining who is going to be in that 20% versus the 80% who will not do as well. But I am confident that I will beat the odds with a positive attitude because sometimes the mind is more powerful than the body.
I have MS, MS doesn’t have me
Seeing how Montel used his TV show to spread awareness about MS, I have decided I am going to use my privilege of being DECA president to raise awareness about MS. It is important that people are made aware of this disease because it is no longer an adult disease. It is affecting younger people like me. The MS society now estimates that there are about 450,000 cases of MS in the United States. It is extremely difficult to estimate accurately just how many have MS because of the variability of the disease and the fact that many can hide it or may not even notice it. If one person out of the 1100+ students at my school can benefit from my story about MS, it would make everything worth it. I hope one day I can inspire young adults the way Montel inspired me.