At the beginning of January 2007 when I returned to Stellenbosch to continue my studies, I realized the vision in my left eye was decreasing rapidly. I told my parents about it and they said we should wait a while and see my vision would return naturally.
A few weeks later I started experiencing nausea, double vision, migraines, and weakness in my arms and legs. I did not pay too much attention to it, as I participated in hockey and kickboxing. I thought it might just be fatigue.
By mid-March 2007, the pain in my left eye was unbearable. I started wearing an eye patch as any light would cause the eye to close by itself. Although I was in pain I continued going to class. This was my last year as undergraduate and I could not afford to miss anything.
At the same time, my computer started giving problems and I lost all my recourses and work I have done over the years. During that time, we had a lecturer from the Netherlands for Dutch and I asked him if he could help me as I lost all my resources and was struggling to see. He looked at me and told me straight out that I was an accident prone to happen and I will never succeed in life. My lecturer heard the conversation and started laughing. This reaction just motivated me more to prove them all wrong. My eye kept swelling and I could longer see as the slighted bit of light was hurting my eye.
I went home for the holidays and spoke to my parents again after a doctor in Stellenbosch told me it was just sinusitis. At this stage it felt like a dark spot was moving in front of my pupil and distorting my vison completely. My parents sent me to our family doctor and he also confirmed sinusitis. I could not believe it. Everyone thought I was pretending; it’s just sinusitis and I was told I am only pretending as it was my last year as undergraduate and I am looking for attention.
The pressure and pain behind my eye ball started affecting my studies and I took stronger pain killers to be able to go to class. By the end of May 2008, the migraine had been hanging on for about six weeks and I could not attend class anymore. The pain was unbearable and I had to crawl to the bathroom and kitchen area.
At that point, my friends at university started taking care of me and fed me when they returned from class. Luckily one of my friends' mothers came to visit us one evening, and she is a pharmacist. I asked her if she could take a look at my eye and see if this is truly sinusitis as no one believed me and I actually started thinking it is all in my head.
She tried using a light to look in my left eye, but by that time my eye did not want to open fully anymore and it rolled back as soon as the light shown on it. She gave me one look and immediately called an eye specialist in Bellville and said she had a crisis with a patient and she would take me to him the next day. Although they were fully booked, but the doctor could hear in her voice that it this was serious. The next day, various tests were done on my eyes, and I was diagnosed with optic neuritis. The doctor told me I should be admitted immediately to save my eye. I told him I had to submit an assignment that Friday and it was now Wednesday.
He then told me I had two choices. One, I go the hospital so they can save my eye or two, I can finish my assignment and be left blinded in that eye. I called my mother and asked what she suggested. She was very upset and said I should go right away.
After the appointment with the eye specialist, we went to a neurologist who had to examine me before I could be admitted to hospital. He did various tests on my eyes and motor responses and found that the left side of my body was weak and my left eye could not distinguish objects at all. He also confirmed I should be admitted as soon as possible.
Since I had nothing with me, I was only admitted to Panorama Medi Clinic the following morning at around nine o'clock. It was a terrible experience for me as I had to wait for almost two hours before anyone came to do the admission process and explain what they were going to do. Didn’t get much out of them though. They did different tests (no idea), drew blood, and ran around but no one told me what was going on (no pressure). Furthermore, I was there alone without my parents' support, as they could not come leave for Cape Town due to work related meetings. My friends also had to stay behind in Stellenbosch for class, and my family in the Cape Town area worked until late at night. I had no support, did not know what was going on and felt completely helpless.
At one point, they told me I had to go for an MRI. They explained that it was a scan of my brain and it was not going to be that bad at all. Little did I know what was to come. They put me on the table and tied my head down. I told them I was scared, but they said they will give me headphones and the music will make me forget about the narrow space. The headphones looked like a solid rescue operation at that point, but when I moved in and felt the space getting smaller, I started to panic. They saw me moving and turned on the music. They could not have chosen a worse time, when the first sounds of "Time to say goodbye" began to hiss in my ears, it was as if everything was just getting too much. I started snatching the stuff from me and they ran in and took me back to my bed. Six hours later, after one of my school friends had specially driven from the Cape to support me, I was calm enough to get into the machine and it went better. They put me on cortisone drips for about 5 days. My sight slowly but surely began to recover. As an afterthought: the joy of not telling a patient what cortisone does to your body, is a story for another time. Let’s not go there now.
At one point during my stay in the hospital, the neurologist said he needed to do a lumbar puncture to see if there were any problems. I just took the pain and prayed it was over. Meanwhile, my friend and her parents came to visit and the neurologist wanted to know where my parents were, I told him these are closest parents I have now as mine could not come. He then told me and my friend to go for a walk while he spoke to her parents.
At that point, my friend and her parents already knew what was going on, but she had to talk to me first before he would inform me. As we sat down to have some coffee, she told me she couldn’t find a way to sugar-coat the possible diagnoses and started crying as she said there is a lesion just behind the left optic nerve in my brain and that I may have a chronic illness called Multiple Sclerosis (MS), which destroys the neurons in my brain and I may end up in a wheelchair. It felt surreal, as if I was in a dream world and would wake up at any moment. I was sitting there screaming internally and saying to myself to just scream and wake up from this nightmare engulfing me.
I mean, come on? At first I thought I had sinusitis and then all of a sudden I was told it’s optic neuritis and now I have to sit here, scared out of my mind, and listen to my friend saying that it all might be a illness that might leave me paralyzed for the rest of my life.
I immediately contacted my parents and told them what was going on. They started crying and hung up the phone. By the end of the hospital stay, the neurologist prescribed 120 cortisone tablets. For about a week, I tried to talk to my parents about the possible diagnoses, but as soon as I touch the subject, they changed the conversation or told me they cannot talk right now. I had to process everything alone. I finished my assignments and submitted it, but did poorly. I could not concentrate, I felt sick, I couldn’t sleep and the cortisone weakened my body.
When I went back to Stellenbosch after the June holidays, I was only there for a week when my brand-new computer’s mother board decided to die on me. Nice. I mean, truly it cannot get any better than this. I lost another computer, but this time all my work was on other hard drives.
Unfortunately, I failed my first semester because I couldn’t attend class or focus on my assignments, therefore I made an appointment with my lecturers and explained to them what was going on just so they could understand. One of them did not want to budge at all. I asked if the lecturer if she knew what MS was, and the answer was, "No, entertain me and tell me what MS is." I explained to the lecturer what could possibly happen, and left the office while the other lecturer cautioned her about her attitude and that maybe I am telling the truth.
I started attending class again and things seemed positive again because God carried me through the most difficult time of my life when I had to stand alone.
During the September holidays I realized my eyesight started deteriorating again. At first, I thought it was just my imagination, but when the dark spots started appearing again, I knew. My father came to visit me and I told him I was losing my vision again. He said it is impossible, it cannot be and I kept on saying it was true. He got annoyed at me and said he was making an appointment with me at a neurologist and ophthalmologist in Stellenbosch so they could prove me wrong. I went to see the neurologist and explained my medical history regarding the first episode.
She reflected and said my chances of getting MS were very slim because I am still too young. She then referred me to the ophthalmologist. I was supposed to attend a tutoring class that day, but unfortunately the only opening to see the ophthalmologist was in the same time slot as my class. Darn. Long story short, he immediately confirmed I had optical neuritis again.
Well, that same night we wrote a test and I passed it using one eye. The lecturer was upset that I did not get hospitalized that day and I told her I will write and then go to hospital. Yeah, I am stubborn like that. The next day I was admitted to Stellenbosch Medi Clinic. They did an MRI, but this time they gave me a light anaesthetic because I told them about my first experience.
This time there was another lesion right behind the previous one. Fun times. I was put on cortisone again and this time it went faster as this relapse was not as big as the first one. They did another lumbar puncture, but it went wrong when the radiologist stabbed the nerve in my left leg because he was in too much of a hurry. I was in so much pain at that point, physically, mentally, and emotionally that I almost didn’t want to get up anymore, but I kept going.
I went to class again the following week even though I could barely walk. That Friday (a week after my previous visit), I was asked to go for an MRI and a lumbar puncture again. This MRI showed a lot of new lesions and the lumbar puncture came back positive for Relapse Remitting Multiple Sclerosis (RRMS). I hit rock-bottom. What kind of year was this supposed to be? My finale undergraduate year. I mean, come one! This year started with migraines, temporary blindness and then it turned into a chronic neurological disease. Some of my friends were deeply shocked, some of them did not talk to me for weeks, others just cried when they saw me.
I had to be strong for myself, my parents and my friends and did not have time to process it myself. My friends said bluntly that if this had to happen to one of them, they would gone home and not come back, while some of them said they couldn’t believe I decided to stay at the university. My struggle motivated them to continue with their own studies as I told them I staying and finishing my studies as I will not go home and cry over spilled milk. Life must go on, even if you walk alone.
My neurologist then informed me that I would have to inject myself in the upper thigh muscles once a week to ensure that the relapses did not occur so quickly one after the other. She started collecting all the information to provide it to the medical aid, as they did not consider MS as a chronic disease at this stage. It took a while to get approved and I had to wait for Avonex in Johannesburg to confirm that I could start the Avonex Beta 1a injection in December 2007.
While we waited, I passed my second semester and thought the worst was over now. Since I failed my first semester, I had to apply for the Dean's Examination and the pressure increased. By mid-December, I heard that the injection was on its way, and that the relapses would decrease by 30%. I feared the idea of starting to inject myself, but also felt relieved that there was at least one bright star sparkling at me in this dark year filled with lots of confusion, abandonment, and pain.
By January 2008, I was told to complete assignments for my Dean’s Examination. I started with my Diploma in Translation and Interpreting and had Lexicography, Translation, Translation Theory, Interpreting, Interpreting Theory, Editing, Generic Editing and Secondary Content. I attended every class and my work was always up to date, although I still did the assignments and did not sleep much.
In February 2008, I was informed that I passed my Dean's Examination as well as the first part of my Diploma in Translation and Interpreting. That year I also passed the two part of the Diploma in Translation and Interpreting, despite everything, the impact of my illness and the trauma I faced.
In March 2009, I experienced blindness again, this time in both eyes. I visited the ophthalmologist who again confirmed optic neuritis. I asked him what he suggested and he said I would have to get cortisone as soon as possible. I tried to reach my neurologist, but she was at a MS seminar in America. At that point, my dad called several doctors and neurologists to ask if they could give me the cortisone. 20 Doctors refused because cortisone is so dangerous. The 21st doctor was in Somerset West, he was the only one willing to help me. He told my dad I he wanted to see me and he will take full responsibility for my life and health. That is how I met my current neurologist.
He said he could see me the Friday afternoon after my classes were finished. Bless him. I walked to class that morning, even though I was in pain. That afternoon I was admitted and by the time he saw me, I have lost almost all vision in my left eye and half of my vision in my right. I was placed in a private room for observation and treatment. The cortisone made me sick again and I got a fever. Little did I know my friends drove through from Stellenbosch to see if I was still okay, and they were shocked when they saw me. It took lots of convincing to calm them and tell them I will be fine.
I was discharge and went back to class again. We wrote a semester test the following week and although I was not healthy yet, I wrote the test and passed it. Things started to look positive again and I did well under the circumstances.
By August that year I started feeling sick again. It was worse than before, although my eyesight was not badly affected, I experienced pins and needles in my legs and arms. I struggled to catch my breath and my heart felt like it wanted to pound out of my chest. I tried to push through, but by Sunday evening a quarter before 12, I could not speak, my left arm was lame and I was sweating in a cold sweat. My friends helped me in the car and drove me to the Emergency Department at Stellenbosch Medi Clinic. There they put me on a heart monitor and my heart rate jumped between 98 and 120. My left leg started jerking and I felt like I was going into a trance. My one friend kept me awake all the time and talked to me. My lips turned purple and it felt like my lungs did not want to take in oxygen. The nurse injected me and gave me pills and after that I was taken to the regular ward. My neurologist examined me the next day and when she asked me to walk to see what my motor reactions were, I could only walk to the end of the bed. She was very worried and kept me until Friday for neurological examinations and sent me back for visual field tests. The ophthalmologist confirmed that it was a relapse and that the vision loss was visible in both eyes. I was discharge and the following week I went back to class. Yeah. By now my life was filled with doctors’ appointments, going to hospital and class.
That week I had another appointment to see how I was progressing, that's when I first heard that I also had Inflammation in the brain. My motor responses were tested again and my balance was very weak and my left eye was swollen again. The doctor said I should watch it and see if it gets worse.
It was hard to do work since I had partial vision, but I still completed everything I had to do. The week after I starting experiencing ear pain and back to the doctor I went. This time it was confirmed I had tonsillitis and inflammation behind my eardrums. I was so tired of pills and injection, but still pushed through. That same week I had to go to the ophthalmologist for a follow-up to see how my vision was progressing. The visual field tests showed that the vision loss was unchanged and the vision in my left eye was declining. The ophthalmologist was considering recommending cortisone again, but my neurologist first wanted to see if the vision loss might improve on its own. Well done, doctor. Not! At that stage I was in so much pain and the vision loss frustrated me, especially when my eye swelled shut, but I am continued going to class.
I relapsed again in 2010 and 2011 during my studies while busy doing my Bphil in translation. I always made sure to go to hospital over a weekend to receive cortisone so as not to miss my classes. I was already used to the process, and it was less traumatic. I also realized, if you calmly go into it and accept it, it will be less traumatic and you can handle it better.
In 2012, everything started out so well and I thought my MS was in remission for a while now, but by October I was experiencing dizziness, nausea, balance problems, vision problems and orientation problems, especially if I had to drive. I went for the tests again and it was confirmed that I had yet another relapse, but this one was much worse than before.
I was admitted again, and got cortisone, but could not drive for a month at all. After a long road of recovery, I went back to work, but by March 2013 the symptoms started to flare up again. I went to see my neurologist, who immediately had me booked in at Stellenbosch Medi Clinic, where they did blood tests, MRI’s, and a lumbar puncture again. Let me just mention here that during that time my then neurologist refused to prescribe me my medication and wanted to start me on Copaxone, (daily injection – different sights) I refused. That was the last straw. I wouldn’t let a doctor force me to do something I am not comfortable with and that was it. I went back to the doctor that helped me while she was in America and the rest is history.
Now we are a few years down the road after having had relapses every five months for two years and the occasional two to three relapses a year and I am proud to say I am with an amazing neurologist. He saved my life and for that I will be forever grateful.