I always feel a connection with Allah while listening to the weekly Friday lectures before prayers. Many times it is as if Allah has inspired the speaker to add in a little message for me or sometimes the topic is exactly related to whats happened to me in the week. During one of these lectures at the Bosmont Masjid in December, the last Friday before my long awaited week off work, the words that caught my attention were about the various ways that Allah tests people. The speaker pointed out that Allah tests people in order to bring them closer to him. These tests present themselves in many ways including financial difficulties, health problems or the death of loved ones. A person is scored according to his/her reaction to the situation. The ideal reaction being Sabr (Patience), asking Allah for help and Tawaqul-illAllah (Trust and Faith in Allah).
At that moment I thought to myself, "My life has been going great for a long while, I wonder when and what my next test will be? Hopefully it won't happen in the next week or two, because I really need the upcoming holiday!". I "spoke" to Allah and asked that if there are any tests planned, that they be held off until after my holiday and that He does not burden me with a test that I cannot manage, after hearing the speaker say, "Allah will not burden a person with a test greater than he can bear". I felt guilty about trying to tell Allah when it will be suitable to be tested and retracted the request and asked instead that the test manageable and that I pass the test.
I took my 1st day off from work for the year the following Thursday for Eid ul Adha. The day started fine, but I found myself in bed by the afternoon with a bad flu. I decided to take the Friday off from work so that I'd recover sufficiently to make the planned journey to Wilderness for my week long holiday with my family. I had a terrible headache by Friday evening and had to take a Voltaren injection in order to allow me to pack my bags and the car. As usual I refused to take any antibiotics because "I know that they don't have any effect on Viral infections and we spoil our immune systems.....doctors don't know anything....I know everything....".
We set off for Wilderness early Saturday morning and together with my box of tissues, I felt confident I'd be ok. The 12 hour journey was taxing, I refused to turn on the Air-conditioner despite the 30 degree heat because it was making my throat sore. Besides the routine stops every two hours, I ended up stopping another 3 or 4 times because my 3 year old had diarrhea and timed the bouts between scheduled stops and where it would be most dangerous to stop. I still feel bad about the way I treated him out of anger, knowing that it was not in his control. All in all a stressful day.
Once in Wilderness all was great, except for my flu which hadn't gone away yet. I finally gave in to the pressure and started a course of Betamox(Amoxilin) antibiotics on Monday. I felt a little better by Tuesday, except that I think one of the prawns I ate for lunch left me with a slight stomach ache.
On Wednesday morning I woke up and felt a strange sensation in my eyes. I told my wife that "it feels like one eye is lower than the other". I suspected that it was sinus related and took a Sinumax. I spent that afternoon on the beach with my son. It was a really great afternoon, theres nothing like watching a 3 year old being introduced to the beach and sea. While sitting on the beach I watched as people walked by. At one point two Muslim looking boys walked by with fishing rods and I considered greeting them. After figuring that it didn't take much effort, I greeted them with Salaams. A minute later another Muslim man walked by with his son and also greeted him with a smile. I didn't realize the value of the gesture. With the sun almost set, I had to drag my son off the beach, promising to return the next day.
I didn't feel any better that evening and asked my wife for something strong and she suggested that I take an Allergex. After taking the Allergex we went our for supper to a nearby mall. Once I reached there, I felt like I was drugged. My legs and body suddenly felt weak and I asked my wife to drive us back to the hotel.
I woke up on Thursday morning not able to see things further than an arms length away. Everything further had blurred edges or were double depending on how far away it was. I also felt very weak and was walking with some difficulty. After a weird breakfast, where I couldn't see anything beyond my table, I asked my wife to drive me to a clinic because I suspected that I was allergic to either the Sinumax or Allergex or both.
At George Medi-Clinic, I told the Doctor about my suspicion and because of a previous personal experience that she had with Allergex, the Doctor said that it was probably as a result of low blood pressure and she gave me an injection and some blood pressure medication saying that I would be ok in a few hours. I thanked her and was on the beach with the kids in 30 minutes. However, my sight did not improve, in fact it seemed to deteriorate in the hour or two that we spent on the beach. I struggled climbing up the stairway that led back to the hotel and decided to return to the clinic.
By the time I returned to the clinic I was very weak and could barely walk. One of my biggest worries at the time was that I would probably be admitted. Since this was supposed to be our last night in Wilderness, I stressed about how my wife and kids would manage to get back to the hotel if I was admitted and what would happen if I had to stay on for more than a day. In the midst of my stressing, I was greeted by someone, who I could not recognize at 1st. He introduced himself and said that he remembered greeting me on the beach the other day and asked what was going on. Ebrahim Sibdah was to me a gift from Allah for the small deed I did two days on the beach, I greeted my fellow Muslim. After explaining why I was there and listening to the reason why he was there (his nephew had accidentally fallen into a pool), he comforted me and assured me that all would be ok and that he and his family would be around to help my wife and I should we require any. We both knew that our meeting was no coincidence and at that point I remembered Allah and realized that my test had begun.
I was examined by a doctor, who immediately admitted me and sent me for blood tests and a CT scan. The blood tests did not reveal anything and the CT scan showed severe sinus pressure, but nothing else Shukr Alhumdulillah. The doctor said that they would assume that the problem was sinus related until they carry out further tests, but that they would put me onto a broad spectrum antibiotic in case of Meningitis or Encephalitis. With a heavy heart I sent my family back to the hotel and prayed that Allah assist my wife on the 20 minute journey, late at night with the 2 babies. Allah alone knows how she managed with all the stress and the crying kids. I called my parents and let them know about the situation.
The next day, as I was being taken by wheelchair for an MRI scan, my parents arrived. They were visibly shocked by my state. The MRI was much more uncomfortable than the CT scan I discovered. I wasn't told how long I'd be in the narrow tube and after what seemed like 15 minutes, I began experiencing some claustrophobia. This got worse until I discovered a solution...Salaah (Prayer)! There was nothing more calming than performing my Zuhr Salaah, in my mind, slowly and carefully. I hadn't finished my Salaah, when the radiographer pulled me out of the tube and told me that there didn't seem to be any good reason to perform the contrast MRI. I was more than happy to agree with her decision.
Since nothing was found on the MRI, and I felt worse the next morning, I was asked to consider a lumbar puncture (spinal tap). The treatment would remain the same regardless of the outcome but at least the cause would be known. I decided that it was not worth it and decided to give it another day. The following day, with no improvement I greeted my wife and kids before they left for the airport to return home and as they left the hospital, I gave the Neurosurgeon the go ahead to perform the spinal tap.
I began praying as the surgeon prepared the area on my back and shukr Alhumdulillah, much to my surprise and relief, it was over before I knew it! I was told to lie down for at least 6 hours to prevent a head-ache and I gladly complied. Alhumdulillah, there was no headache and the results showed no sign of meningitis or encephalitis. There was an increase in some protein or lymphoid said the surgeon and he theorised that it could be as a result of a n infection in close proximity to the brain, possibly sinusitis.
I wasn't confident in what I had been told. The surgeon talked about "nearby syndrome" caused by sinusitis, the ENT didn't looked convinced that sinusitis could cause my symptoms and the surgeon was neither here nor there. I was becoming more depressed and worried and I knew that it is never a good idea to get depressed while ill because it just makes matters worse. Allah made it easy for me to see that there were people much worse of than me, because next to me was a man that was in for his 10th operation! Despite the fact that he was not allowed to eat or drink for a week and had tubes sticking out from everywhere, he remained cheerful and positive. Opposite me lay a man that came in because the chemotherapy he was on for cancer, was making him too ill to eat. I made shukr that I could still eat, drink and relieve myself.
I noticed that I had no feeling in my bowels or bladder when I needed to relieve myself. I just felt strangely uncomfortable and knew that I had to go. Also, I had to try and look at what was happening because I couldn't feel whether I was done.
After 5 days in hospital and 3 days away from my family, I decided that it was time to make my way home. My parents, who were with me all the time, every day, arranged a flight for me and I greeted my new friends at the clinic as I left the clinic in a wheelchair. I could not walk more than a few meters and could not see anything further away than my hands clearly. Travelling by car was awful, the whole world seems to shake. I was the last person to board the plane and could just feel the stares and looks of sympathy from the passengers and crew as I stumbled to my seat. It was horrible.
Back at home
After a 2 hour flight and 1 hour drive, I arrived at my in-laws house where I was greeted by my wife, kids and sister in law. She was literally dumbfounded at what I looked like and just stared in shock. I was relieved to be back home, but felt weaker then ever. My wife arranged an appointment with a local ENT, who sent me for another MRI. Once again, I passed the time reading Salaah. The MRI showed that the sinuses had cleared quite a bit and the ENT was not very keen on the "nearby syndrome"/sinusitis theory and tried in vain to refer me to a neurologist. They were all on holiday!
At this point, I began using my mobile to surf the Internet and tried to find answers for myself. A HUGE mistake. I urge anyone with GBS or MFS who is reading this, to take heed of this warning, DO NOT LOOK FOR ANSWERS ON THE INTERNET, read this and be done with the Internet! The symptoms I Googled for included "double vision, weakness, numbness" and the results more than often pointed to one scary disease, which I won't even mention for the sake of any MFS/GBS sufferer reading this. The disease in question does not share the good prognosis that MFS and GBS have and there is absolutely no reason to go through the stress and depression I went through as a result of finding this unnecessary information. I became so distressed and depressed that I spent many hours crying and making my wife cry with talk of the hereafter and death.
This was the low point at which I remembered to ask Allah for help, sincerely. I started realising what I had been doing wrong all along. I had been putting my trust in everyone except Allah. I expected doctors to know what was wrong and to cure me. It was only now that I had lost all faith in doctors that I started realising that my faith was misplaced. I started praying that Allah cures me and started praying that Allah guides me to a cure.
My prayer was answered when my wife informed me that her uncle, an ophthalmologist had offered to see me on a Saturday. He calmly went about examining my eyes, explaining every step as he went along. He pointed out to me that I was unable to move my eyes upward and that whenever I looked to the sides, the eye on the other side dropped down instead of moving across. There were more than two muscles that weren't working properly, an oblique muscle and the muscle that pulled the eyeballs upward. He correctly identified the problem as a nerve problem and immediately called a neurologist colleague of his, Prof. G. Modi to make an appointment for me. On the telephone, he mentioned the symptoms and a brief history and I heard him say "Guillain Barre or Miller Fisher".
The following Monday, 13 days after the 1st symptoms, I visited Prof. Modi at his offices, accompanied by my father-in-law who held my arm as I walked. I began by explaining to him the sequence of events and symptoms and he proceeded to examine me. I was given some shock tests in my arms and legs and he then tested my eyes and my reflexes. He pointed out that I had no deep tendon reflexes! He said that I had typical symptoms and history of Miller Fisher Syndrome. He suggested that it was going to be a long road to hopefully full recovery and suggested that I begin the journey with a treatment of either Plasmapheresis or Intravenous Immunoglobulins (IvIg). He said that he had more success with IvIg, but mentioned that I may need the other should he not see results soon after treatment. I was very relieved that someone knew what was going on, but had to be careful not to forget that Allah had led me to him and that Allah had given him the knowledge and signs to make the diagnosis. There was already an improvement in my Allah-consciousness, albeit not nearly enough!
I was admitted to hospital again, for a 5 day, 34 gram a day IvIg treatment. By day 3, my eyes began feeling strange again and the numbness in my toes had disappeared. The neuro was happy to inform me that my eyeballs were able to move upward again! There wasn't much more improvement except for the weird sensations in my arms disappearing also by the end of the treatment.
A week later I was back at home and from then began a cycle of improvement, scary and depressing down periods and more improvement that continues till today (5 months later). I noticed improvements every two weeks.
I made up my mind to correct several things in my life:
- My Salaah (prayer), which was reduced to simply doing the motions before I fell ill. I decided that I would perform my prayers, with concentration, at the appointed times, to the best of my ability, in congregation.
- Reading of the Quraan, I had been trying to get myself to read Quraan regularly, but this never happened. I began reading the Quraan daily, 1st in Arabic, then in Arabic and English. The Quraan is truly a cure and blessing for mankind!
- My relationship with my parents, I neglected my duty to my parents and decided to improve my relationship with them.
- The use of my body, I had abused my eyes, my fingers, in fact every paart of my body. I aimed to stop using them for wrong and to appreciate the use of my amenities for doing good instead.
My 1st Jummuah (Friday) prayer after the treatment was difficult. I had to sit down and pray and couldn't see people next to or in front of me. The week after was spent at home because I had a bit of a dip. But every 2nd Jummah thereafter unveiled some improvements, such as being able to look to the sides, then straight ahead (but not sides again) and being able to walk and stand for longer.
8 weeks after the treatment, I could see properly again in most directions. I could not focus on objects while walking because everything seemed to bounce. This also improved within another 2 weeks.
What remains till today (5 months later), are weird sensations in my arms, legs and eyes, especially when I'm tired. These seem to come and go in cycles and are accompanied by anxiety, whether the cause or result, I'm still not sure.
All in all, it was a frightening experience. I am not invincible, I am human, Fragile! I think of death evey day and as a result, I think of life after death and as a result I remember God.
Taqwah = Piety, Piety = Awareness of Allah
My prayers have been answered, my taqwah has increased, I have cryed in prayer, I read Quraan in Arabic and English every day. Thank you Allah, you are the Greatest.
My prayer: "Oh Allah, please let all the good that I have gained out of this experience remain. Please remove all the bad that I am left with after this experience. Oh Allah, please grant me good health and strong imaan (Faith). Oh Allah, please grant me physical, mental and strength in imaan., Ameen"
Guillain Barre Syndrome
GBS for Dr.'s
GBS for Patients
Miller Fisher Syndrome
To be continued....