Surviving GBS syndrome:Chapter 5
THERE IS WAR IN MY BODY: Chapter 5
THE RISE OF THE PHOENIX
In Greek and Egyptian mythology a phoenix is a mythical large bird with supernatural powers to come back to life after death. It symbolizes death and resurrection, it is believed that after living for more than 100 years it burns into ashes and then rises again to a new life. So I viewed myself, in that light after my GBS syndrome experience. The experience was like going to hell and back. It wasn't for the faint-hearted, I realised then that, what doesn't kill you makes you stronger. My condition deteriorated rapidly in my first few days in the hospital, I came limping and was walking with a stick, and to not able to walk at all. After two days in the hospital, I lost the ability to stand unaided, walk, visit the bathroom, even with a walking frame, My hands didn't have power and strength, my palms were tingling and didn't have strength too. My hands struggled to open closed containers. I couldn't lift my legs, it felt like I carried 20kg of weights on every single leg. I lost most of the muscles on my legs especially the muscles behind my legs, from the feet right up to the thighs. My muscles became so fluffy and jelly. It was scary. I lost about 20kg from 85kg to 70kg. It was disheartening and painful and It was a hopeless situation yet I managed to summon my inner strength and my perseverance.
********
My young brother was diagnosed with type 1 diabetes at the age of five years and has been injecting himself ever since. Type 1 diabetes is also an autoimmune disease. I also adopted his funny diet as well, like taking sugarless tea, eating brown bread, less cooking oil, avoiding carbonated drinks and so forth. I have been eating brown bread ever since my young brother's diagnosis. Brown bread doesn't taste nice at all to me. I ate brown bread every day in the hospital and hoped that I would stop when I got home. It never happened my mother made sure when she arrived in Joburg that brown bread and I were married. My breakfast at home consisted of one raw egg, cooked eggs, brown bread juice or tea. I was glad when she never insisted on porridge, I guessed it was because she knew that I never liked it. I developed the habit of having at least one raw egg every day, I wasn't sure if it helped but I did it anywhere. Raw egg is not for the faint-hearted, I read somewhere that chicken was good for my condition, I supposed eggs were good too.
*******
On the 28th of September 2017, a friend of mine told me that he wasn't going to work the following three days, so he asked me if I would be interested in going to the community park the next day, where there are outdoor gym facilities. I told him that I didn't mind and that I did appreciate that. He dropped us at the park and told me to call him when we were done. I was still dependent on my walking frame, Exercises became my daily bread. Any form of exercise was initially a tall order, it was hectic and very painful. I was basically in a vegetative state and had to work out of that state daily, every hour and every minute. I never rested when I was in the hospital and when I was discharged. At home, I worked out like a teenager who recently discovered his or her private parts. I had lost most of the muscles on my legs. We spend at least two hours working out at the park. I went from one equipment to the other until I couldn't have the strength anymore to workout. It was liberating and it was my first time since I left the hospital to go out in public. When we were done I called my friend to come to pick us up. I told my brother to carry our stuff and head to the entrance. I carried my walking frame and started walking towards the entrance. It wasn't a perfect walk but I enjoyed it so much. It was the longest walk I had done. My brother was so happy and he started recording. When we reached the entrance the friend was already waiting for us. My friend was so elated when he saw me walking towards his car. When we arrived home my brother showed my mother the walking clip, that day became my mother's happiest day. When I arrived home I decided to throw away my walking frame. I told myself that from the 28th September I was not gonna use it again and that I was gonna walk without any form of assistance. I started walking around the house and outside and doing things for myself without any assistance.
On 29 September my mother left Johannesburg, she left a happy woman. My progress and healing were astounding and unbelievable. I was walking again, it wasn't the best walk but it was very good. It felt so good to be on my feet again. I discovered that I had power over my body through my mind. It was mind over matter. Previously I couldn't stand without balancing on the walking frame or something. I simply gave instructions to my body to just stand, just walk and it happened just like that. Being in the position of sickness where one is unable to assist herself or himself, is emotionally draining. To find love in that situation is as rare as finding gold or diamonds in the streets. Even the love of friends or family is trickier as well. I had another lesson and it was inspired by one of my lady friends through an interesting conversation, she was domiciled in Colombia at the time. she said people will not visit you or even call you, let alone feel pity for you because they are not obliged to. She told me that I don't owe them anything so I must never expect anything from anyone. What she said was true and I had experienced it. I have also accepted that my life will never be the same again positively. Life will always go on and life doesn't come with predetermined expectations. My sickness was my cross to carry alone, just like Jesus did. When he carried his cross. There were so many people on that day, some felt for him whilst others just watched from the sidelines. That is the way it is in life.
*********
Bell palsy is not a laughing matter. Laughing became a big challenge for me and it was emotionally involving. My left side of the face had palsy or in simple terms, my left side of the face lost muscle control. I couldn't blink as frequent as necessary, wink and control my left side. So each time I spoke to people I spoke through the right side of my mouth. I avoided laughing, it had become apparent each time I laughed. When I used face time calls people would ask me why I wasn't happy. I explained to some whilst I chose to keep quiet to others. Bell's palsy normally recovers on its own with time, I did facial exercises to just speed up the process. It also started improving little by little.i accepted that complete recovery was a matter of time. And that the day would come. Exactly 12 days into recovery I threw away my walking frame and depended less on my golf stick cum walking stick. I started walking around more and more in the house, then outside. I refused any help from anyone because I wanted to do it alone and to retrain my brain and my muscles. Initially, it was hard just standing and trying to balance, I refused to fall or stagger. That is the instruction I told my brain and my brain quickly instructed my muscles and my legs. It soon becomes my daily bread. Muscles easily forget to do their job especially when the nerves are damaged, hence exercises or physiotherapy. There are higher chances that once the muscles forget walking one will not walk again.
28 September of each year is my GBS anniversary and also my GBS Syndrome independence. This is the day I got sick and coincidentally the day I started making great walking strides. Ever since this day, I became able to walk again. What I learnt through GBS syndrome I could never have learnt, it anywhere in my entire life not even at Oxford or Harvard University. It is an experience I don't wish on anyone but great to me nonetheless. I became an expert in this kind of condition. An autoimmune disease is a disease in which the body's immune system attacks healthy cells. There are so many types of Autoimmune diseases and the more one reads about them the scarier it becomes. I was inspired by Professor Stephen William Hawking, CH, CBE, FRS, FRSA who according to Wikipedia was diagnosed with Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) and Lou Gehrig's disease,"...it is a specific disease that causes the death of neurons which control voluntary muscles. Some also use the term motor neuron disease for a group of conditions of which ALS is the most common.[2] ALS is characterized by stiff muscles, muscle twitching, and gradually worsening weakness due to muscles decreasing in size.[2] This results in difficulty speaking, swallowing, and eventually breathing...." The doctors gave him 2-3 years of life and he later died in 2018 after a determined successful life. Just like me, the doctors told me that recovery takes more than a year or even more. I refused to listen to the doctors and I told myself I was gonna defy all the odds and I did and I am still doing it.
************
I returned to the office after 24 days of non-office action. It was on the 5th of October 2017. A day before I had arranged with a friend to take me to Rivonia to my workplace. We had agreed that he was gonna come at 8 am when he didn't show up at the agreed time, I switched to plan B, which was Taxis (Combi), that was my initial plan anywhere. I wanted to see how far my legs would carry me, it was also a practice session for me, given that my exercise regime included walking for at least fifteen minutes or five kilometres or whichever is greater. The sky was pregnant with dark clouds and I wondered at what time was the birth going to take place. The rain wasn't hectic despite the huge pregnancy, it was showering. I left the house without the umbrella because I couldn't locate one in the house. I walked to the taxi rank with my golf stick in hand, Not because I needed walking assistance it was just a contingency move. The taxi dropped me off at 12th Avenue which is about between three and four kilometres away. The taxi was going upwards Sandton, hence my dropping off. It took me slightly less than fifteen minutes to reach the office. I received a hero's welcome when I stepped my feet into the office, even some new stuff I didn't know were happy to see me. I felt what the Israelites felt when they left Egypt and reached the promised land. All and sundry were so elated to see me again. It was as if I was a soldier who had safely returned from Afganistan, my condition was a war for me and I was a real survivor and a true soldier. I was probably a five-star general because the way I had handled the war so far was meticulous and everyone was so proud of me. Some came to see me at the hospital whilst others just heard my gruelling ordeal. One lady cried she told me that she was afraid to visit me at the hospital, after reading about my condition. I understood her, she was emotional when she saw me. We are all at some point in our life emotional. It touched my heart and soul that there were people who connected with my war. My eyes became submerged in tears, I fought them off because big men don't cry. I moved from one office to the other. My general manager was so happy to see me and he immediately whisked me to the owner's office. We chatted about my health and progress, golf then business, on the business he explained to me that I was only entitled to 30 days paid leave, which became effective in September when I got sick, so I was only going to be paid for six days in October. Thereafter it was gonna be unpaid leave until I came back to work, with a doctor's note certifying that I was fit to work again. I accepted it, it was business and nothing was personal besides, my absence from work didn't stop the world from rotating. It was raining showers when I left the office and it was past 11 am. Getting taxis during this time of the day is hectic, so when I reached Rivonia road, I walked down the road towards the bridge. The showers became heavy and I took refuge at the bus top shade until the taxi came twenty minutes later. When the taxi stopped I asked if it was going to Fourways, of which the driver confirmed then took the front seat. After paying my fair I then started writing this section. I arrived home at 12:45 pm.
THE RISE OF THE PHOENIX
In Greek and Egyptian mythology a phoenix is a mythical large bird with supernatural powers to come back to life after death. It symbolizes death and resurrection, it is believed that after living for more than 100 years it burns into ashes and then rises again to a new life. So I viewed myself, in that light after my GBS syndrome experience. The experience was like going to hell and back. It wasn't for the faint-hearted, I realised then that, what doesn't kill you makes you stronger. My condition deteriorated rapidly in my first few days in the hospital, I came limping and was walking with a stick, and to not able to walk at all. After two days in the hospital, I lost the ability to stand unaided, walk, visit the bathroom, even with a walking frame, My hands didn't have power and strength, my palms were tingling and didn't have strength too. My hands struggled to open closed containers. I couldn't lift my legs, it felt like I carried 20kg of weights on every single leg. I lost most of the muscles on my legs especially the muscles behind my legs, from the feet right up to the thighs. My muscles became so fluffy and jelly. It was scary. I lost about 20kg from 85kg to 70kg. It was disheartening and painful and It was a hopeless situation yet I managed to summon my inner strength and my perseverance.
********
My young brother was diagnosed with type 1 diabetes at the age of five years and has been injecting himself ever since. Type 1 diabetes is also an autoimmune disease. I also adopted his funny diet as well, like taking sugarless tea, eating brown bread, less cooking oil, avoiding carbonated drinks and so forth. I have been eating brown bread ever since my young brother's diagnosis. Brown bread doesn't taste nice at all to me. I ate brown bread every day in the hospital and hoped that I would stop when I got home. It never happened my mother made sure when she arrived in Joburg that brown bread and I were married. My breakfast at home consisted of one raw egg, cooked eggs, brown bread juice or tea. I was glad when she never insisted on porridge, I guessed it was because she knew that I never liked it. I developed the habit of having at least one raw egg every day, I wasn't sure if it helped but I did it anywhere. Raw egg is not for the faint-hearted, I read somewhere that chicken was good for my condition, I supposed eggs were good too.
*******
On the 28th of September 2017, a friend of mine told me that he wasn't going to work the following three days, so he asked me if I would be interested in going to the community park the next day, where there are outdoor gym facilities. I told him that I didn't mind and that I did appreciate that. He dropped us at the park and told me to call him when we were done. I was still dependent on my walking frame, Exercises became my daily bread. Any form of exercise was initially a tall order, it was hectic and very painful. I was basically in a vegetative state and had to work out of that state daily, every hour and every minute. I never rested when I was in the hospital and when I was discharged. At home, I worked out like a teenager who recently discovered his or her private parts. I had lost most of the muscles on my legs. We spend at least two hours working out at the park. I went from one equipment to the other until I couldn't have the strength anymore to workout. It was liberating and it was my first time since I left the hospital to go out in public. When we were done I called my friend to come to pick us up. I told my brother to carry our stuff and head to the entrance. I carried my walking frame and started walking towards the entrance. It wasn't a perfect walk but I enjoyed it so much. It was the longest walk I had done. My brother was so happy and he started recording. When we reached the entrance the friend was already waiting for us. My friend was so elated when he saw me walking towards his car. When we arrived home my brother showed my mother the walking clip, that day became my mother's happiest day. When I arrived home I decided to throw away my walking frame. I told myself that from the 28th September I was not gonna use it again and that I was gonna walk without any form of assistance. I started walking around the house and outside and doing things for myself without any assistance.
On 29 September my mother left Johannesburg, she left a happy woman. My progress and healing were astounding and unbelievable. I was walking again, it wasn't the best walk but it was very good. It felt so good to be on my feet again. I discovered that I had power over my body through my mind. It was mind over matter. Previously I couldn't stand without balancing on the walking frame or something. I simply gave instructions to my body to just stand, just walk and it happened just like that. Being in the position of sickness where one is unable to assist herself or himself, is emotionally draining. To find love in that situation is as rare as finding gold or diamonds in the streets. Even the love of friends or family is trickier as well. I had another lesson and it was inspired by one of my lady friends through an interesting conversation, she was domiciled in Colombia at the time. she said people will not visit you or even call you, let alone feel pity for you because they are not obliged to. She told me that I don't owe them anything so I must never expect anything from anyone. What she said was true and I had experienced it. I have also accepted that my life will never be the same again positively. Life will always go on and life doesn't come with predetermined expectations. My sickness was my cross to carry alone, just like Jesus did. When he carried his cross. There were so many people on that day, some felt for him whilst others just watched from the sidelines. That is the way it is in life.
*********
Bell palsy is not a laughing matter. Laughing became a big challenge for me and it was emotionally involving. My left side of the face had palsy or in simple terms, my left side of the face lost muscle control. I couldn't blink as frequent as necessary, wink and control my left side. So each time I spoke to people I spoke through the right side of my mouth. I avoided laughing, it had become apparent each time I laughed. When I used face time calls people would ask me why I wasn't happy. I explained to some whilst I chose to keep quiet to others. Bell's palsy normally recovers on its own with time, I did facial exercises to just speed up the process. It also started improving little by little.i accepted that complete recovery was a matter of time. And that the day would come. Exactly 12 days into recovery I threw away my walking frame and depended less on my golf stick cum walking stick. I started walking around more and more in the house, then outside. I refused any help from anyone because I wanted to do it alone and to retrain my brain and my muscles. Initially, it was hard just standing and trying to balance, I refused to fall or stagger. That is the instruction I told my brain and my brain quickly instructed my muscles and my legs. It soon becomes my daily bread. Muscles easily forget to do their job especially when the nerves are damaged, hence exercises or physiotherapy. There are higher chances that once the muscles forget walking one will not walk again.
28 September of each year is my GBS anniversary and also my GBS Syndrome independence. This is the day I got sick and coincidentally the day I started making great walking strides. Ever since this day, I became able to walk again. What I learnt through GBS syndrome I could never have learnt, it anywhere in my entire life not even at Oxford or Harvard University. It is an experience I don't wish on anyone but great to me nonetheless. I became an expert in this kind of condition. An autoimmune disease is a disease in which the body's immune system attacks healthy cells. There are so many types of Autoimmune diseases and the more one reads about them the scarier it becomes. I was inspired by Professor Stephen William Hawking, CH, CBE, FRS, FRSA who according to Wikipedia was diagnosed with Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) and Lou Gehrig's disease,"...it is a specific disease that causes the death of neurons which control voluntary muscles. Some also use the term motor neuron disease for a group of conditions of which ALS is the most common.[2] ALS is characterized by stiff muscles, muscle twitching, and gradually worsening weakness due to muscles decreasing in size.[2] This results in difficulty speaking, swallowing, and eventually breathing...." The doctors gave him 2-3 years of life and he later died in 2018 after a determined successful life. Just like me, the doctors told me that recovery takes more than a year or even more. I refused to listen to the doctors and I told myself I was gonna defy all the odds and I did and I am still doing it.
************
I returned to the office after 24 days of non-office action. It was on the 5th of October 2017. A day before I had arranged with a friend to take me to Rivonia to my workplace. We had agreed that he was gonna come at 8 am when he didn't show up at the agreed time, I switched to plan B, which was Taxis (Combi), that was my initial plan anywhere. I wanted to see how far my legs would carry me, it was also a practice session for me, given that my exercise regime included walking for at least fifteen minutes or five kilometres or whichever is greater. The sky was pregnant with dark clouds and I wondered at what time was the birth going to take place. The rain wasn't hectic despite the huge pregnancy, it was showering. I left the house without the umbrella because I couldn't locate one in the house. I walked to the taxi rank with my golf stick in hand, Not because I needed walking assistance it was just a contingency move. The taxi dropped me off at 12th Avenue which is about between three and four kilometres away. The taxi was going upwards Sandton, hence my dropping off. It took me slightly less than fifteen minutes to reach the office. I received a hero's welcome when I stepped my feet into the office, even some new stuff I didn't know were happy to see me. I felt what the Israelites felt when they left Egypt and reached the promised land. All and sundry were so elated to see me again. It was as if I was a soldier who had safely returned from Afganistan, my condition was a war for me and I was a real survivor and a true soldier. I was probably a five-star general because the way I had handled the war so far was meticulous and everyone was so proud of me. Some came to see me at the hospital whilst others just heard my gruelling ordeal. One lady cried she told me that she was afraid to visit me at the hospital, after reading about my condition. I understood her, she was emotional when she saw me. We are all at some point in our life emotional. It touched my heart and soul that there were people who connected with my war. My eyes became submerged in tears, I fought them off because big men don't cry. I moved from one office to the other. My general manager was so happy to see me and he immediately whisked me to the owner's office. We chatted about my health and progress, golf then business, on the business he explained to me that I was only entitled to 30 days paid leave, which became effective in September when I got sick, so I was only going to be paid for six days in October. Thereafter it was gonna be unpaid leave until I came back to work, with a doctor's note certifying that I was fit to work again. I accepted it, it was business and nothing was personal besides, my absence from work didn't stop the world from rotating. It was raining showers when I left the office and it was past 11 am. Getting taxis during this time of the day is hectic, so when I reached Rivonia road, I walked down the road towards the bridge. The showers became heavy and I took refuge at the bus top shade until the taxi came twenty minutes later. When the taxi stopped I asked if it was going to Fourways, of which the driver confirmed then took the front seat. After paying my fair I then started writing this section. I arrived home at 12:45 pm.
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