Hi Jenny

You are probably surprised to see that I eventually decided to write this letter. Firstly I would like to thank you for all your letters. Thanks also that you stay in contact with me. I appreciate it and I’ll be thankful to you forever.

Every time I considered writing this letter, something inside me held me back. It took me very long to actually write you my story – from the onset of my TM to 5 years later…where I am today. I am sharing this journey with all the readers from where I have lived all my life, in South Africa.   

I was born an ordinary, white, Afrikaans boy in a town called East London. Later we moved to a relatively small town, Welkom. At the age of fifteen things went wrong and I was instructed to leave my parents’ house. I fled to a friend’s home and his parents accepted me as a part of their family and allowed me to stay with them. Later on his parents got divorced. When it was time, I went to the army (it was compulsory in those years to join the army). I joined one of the army’s elite battalions. When I completed my years in the army, I started working. I got married and my wife is still by my side, looking after me today. She had two miscarriages before we were blessed with a beautiful daughter. She is our only child and she is my princess.

On the sport front I played rugby and participated in boxing while I was at school. After school I continued playing rugby till the age of 29. The next 5 years between 1997 and 2001 I participated in the world famous Comrades marathon between Pietermaritzburg and Durban.  

Then Transverse Myelitis struck me down and still affects me today…

On the night of 9 January 2002 I woke up with severe back ache…such pain have I never experienced before. On 10 January I went to see a physician who admitted me into hospital. By the time I was on intravenous treatment, the pain had disappeared. I was discharged on 12 January. I asked the physician what the cause of the back ache was and if I could continue exercising. He said that I should rather rest as I had a muscle spasm in my lower back. I went home and later on that day I told my wife that I wasn’t feeling well at all. I stayed in bed that whole day.

At 6pm on Saturday 12 January, the pain returned. This time I went to the emergency unit of the hospital. The physician on duty gave me an injection and sent me home. He did not send me for x-rays or scans or anything else. At 9pm that same evening I went back to the emergency unit. The pain was still acute. The same physician injected me for a second time. I remember him asking my wife to drive the vehicle since the medication would cause drowsiness. At 12pm that night I went back to the hospital for the third time. By then the pain was excruciating. Once again I encountered the same physician. He admitted me to hospital and decided to put me into traction. He still ran no tests, scans or anything else…

Early on Sunday 13 January 2002 I was visited by a physician that was sent to me by the emergency unit doctor of the previous night. He came by for a second time that day. He took the traction off. At 10am that morning I felt that my bladder was full. I went to the bathroom but the urine did not take its natural path as I expected it to; it didn’t come out. My legs felt weak. I went to lie down and thought that the traction I was in caused my legs to feel so weird. At 12am my bladder felt so full that I thought it was going to burst. I got off the bed to visit the bathroom. I walked three steps and then I fell. My wife helped me up from the floor. She put me back into bed.

That was the last time ever that I could walk…..

Everybody struggled to get the physician back to see me. Only at 5pm that afternoon he came to see me. By that time I thought I was busy dying of the excruciating pain in my lower back. Then the physician called a neurosurgeon to have a look at me. The neurosurgeon only arrived at 6.30pm. He called for x-rays and a lumber punch. He said that he could not see any problems. He wanted a scan to be done. The scanner in that hospital was out of order and he said that I was going to be sent to Bloemfontein – a town approximately two hours from were I was in hospital initially.

After a long struggle, they managed to find an old ambulance van to transport me to Bloemfontein. By that time it was 11pm. I arrived at 1am at the hospital in Bloemfontein. They contacted another physician, who lived on a farm outside Bloemfontein. He only arrived after another hour at the hospital. He did the scan. He told me very little except that I should lie still. He said: “I don’t know what I am talking about and I don’t know much about TM.”

At about 3am that morning I was transported back to Welkom. I was helped back into my bed and still nobody could tell me what was wrong with me. When I was lying there, it was difficult to describe what went through my mind. My head was tossing and turning. I can’t really describe it. On the 14th of January 2002, at 10am, life-changing news was given to me in my hospital bed by a few physicians that never introduced themselves to me. I was told that I will be a paraplegic for the rest of my life and that all they can do for me is to organise for me to enter a rehabilitation centre.

Two weeks after I started my programme there, I was discharged from one of the worst rehabilitation centres in South Africa. The centre was a politically orientated mine hospital and it is ironic that I had actually had to go home from the rehabilitation centre to rehabilitate, with the help of my wife.

A whole year and a half later – in September 2003 – I started having bladder and urination issues. The conclusion of these issues was that I required a urostomy bag, but I regret deciding to use one of these bags since urinary stoma pulled back into the canal and I experienced many infections after that. I still experience a large amount of pain in my back and also severe pain that seems to move up and down in my back, with a mixture of a burning sensation at times. After I’ve gone for three physicians’ opinions on my severe back pain, I decided to follow their advice and start using Morphine in the form of syrup. My current dosage is to take the syrup every 12 hours, but I don’t agree with the current prescription since it is a strong prescription and because Morphine is already a strong, scheduled 7 drug.

To sum it all up: I worked hard at the mine for 14 years of my life, where after I was diagnosed with TM and was offered a new job opportunity in the “bonus” department of the mine. On the 20th of April 2005, after Harmony took over the mine, the financial manager gave me a letter which said I shouldn’t return to my regular job at the mine.

Two weeks after the mine retrenched me, the head office in Bloemfontein contacted me to inform me about an interview they would like me to have. The job opportunity that the head office had available was to help repair wheelchairs and to help paraplegics with certain resources. I got the job and I’m very glad to be able to say that I’m helping handicapped people by repairing wheelchairs and helping with resources in the entire Golden Arc Area of South Africa. The detail of my job includes constructing monkey chains, wheelchair carriers and other wheelchair equipment, like commouts for physically handicapped people. About a month ago I managed to construct a breakthrough hydraulic winch with which an elderly man can lift his wife into the bath and lift her out of the bath again. I charged this man almost a quarter of what the initial quote for the winch was, because I like doing my job for the pleasure it provides me and not for the money I make out of it. My wife still works at the APD as she has always been doing.

I would like to thank you very much for reading this letter. I really appreciate the work that you are doing for the all TM patients in the world. It will be very helpful if any TM patients, that experience the same intense back pain as I’m experiencing, can please inform me of what type of medication they’re using for their back pains.

Thank you, once again, and the best of luck with the TM-related work you are busy with.

With thanks

Basil

PS. My mission statement in life says: “Quitters don’t win and winners don’t quit.”