This is my story.
So who am I? Sitting in front of you all? Many of you have seen me charging about the passageways on my motorised wheelchair or sitting in front of my laptop. But who am I?
I am a 63 year old male who resides in Susan Strijdom and has done so for over four years, and lives with MS.
I am British and even though I have lived in South Africa for over 30 years I have never taken out South Africa citizenship. The reason being is that I have spent all my working life involved with the sea and a British passport was easier to travel with. However I am a staunch Sharks supporter and support the Boks and the Proteas before England. I left school just after turning 17 to take up an apprenticeship to become a Deck Officer in the British Merchant Navy.
The official history of my life at sea is contained in these documents which are called discharge books and they record all the ships I have sailed on during my career at sea. What is behind these voyages is for another time and place...Discharge books, Certificate & old Passport.
I started off as an apprentice and ended up as Captain. Do not believe what Hollywood tells you, Ship’s Captains cannot marry you but we can bury you. I served on a variety of ships from refrigerated cargo ships, general cargo, tankers, container ships, bulk carriers and Ro-Ro ships. So I gained quite varied experience.
After leaving the sea, I spent a short period, about two years in Richard’s Bay doing dry cargo surveys before joining a company that among other operations operated offshore oil terminals including the single buoy mooring off Durban where I was primarily stationed before moving to Mossel Bay. 80% of the oil imported into South Africa comes through the Durban pipeline.
In hindsight the first indication that something was not right with my health was that my knees kept collapsing for no apparent reason. I would have ignored the problem but my wife insisted I go to the doctor. In discussion with the doctor I told him that my sister has MS but had been in remission for over twenty years. I did have one consultation with a neurologist but nothing further. To the best of my knowledge MS is not a genetic or hereditary condition.
During my time in Durban I also used to carry out safety inspections on tankers on behalf of Shell International. Many of these inspections meant that I had to fly to various ports on the East Coast of Africa and adjacent islands. I know, the hardship of having to fly to Mauritius on business was really difficult. It was on one of these trips, to Seychelles actually, that I noticed numbness from the waist down. It was a weird feeling, not feeling anything. Pinching myself, I knew I was doing it but no feeling. It was disconcerting to say the least.
On return to Durban I went immediately to the doctor, a locum saw me as my regular GP was on leave. It was possible I had a pinched nerve in my back. I was referred to both a neurosurgeon and a neurologist. X-rays reveal that apparently I had broken my back in the distant past which was news to me. I saw a different neurologist and she immediately had me admitted to hospital. Here I underwent a number of tests including my 1st MRI, including a lumber puncture. That I do not recommend to anyone.
When the results came back it appeared that I may well have MS. The results were given to me & my wife and as we opened them up to read a sister came along and stopped us and told us to wait. The doctor explained the situation what MS was, that they do not know how it starts and to date is incurable. This was when the psychological aspect started to click in. When left on my own in the ward the mind started to race. Yes I had an idea what MS was but living in South Africa I was removed from what my sister had been going through. It was not life threatening but it would certainly alter my quality of life. By how much I was only to find out in time.
The regression of MS was slow and steady to what it is today and I know will get worse as time progresses. From the medical symptoms being numbness in my lower limbs and a feeling under my feet which I describe as a bunched up sock feeling right through to the present day which includes the loss of balance, lack of control of my bladder, left leg not being able operate, left hand being permanently numb, my left upper arm muscles being permanent tight and permanent numbness around my mid-drift. Most people who have MS experience medical conditions either top or bottom, but with me it is left and right. My left side has lost most of its sensation and the loss is compounded by the fact I am left handed. I do not need to be told to try and learn to use my right hand. For 60 plus years my system is conditioned to being left handed and it is not something you change overnight.
While I have serious medical condition, it has been diagnosed as Primary Progressive Multiple Sclerosis which can be treated to a certain degree to stop the regression, all attempts to stop the regression of MS has failed. I have suffered a number of relapses and have been admitted to a number of hospitals to receive a course of steroids (solimdrol) which are meant to slow the regression down. It ain’t worked! For a short period its better but then back to normal. This has a negative psychological impact as I have led an active life and to date had not suffered any serious illnesses (apart from seasickness, which I can assure you are death warmed up and the odd hangover). Nor have I had any serious traumatic accidents of any kind, such as motor accident prior to contracting MS. I ran and finished three comrades without even suffering any blisters. To lose motor functions meant that I could not only be unable do my job but my life at home changed dramatically.
The psychological effects of MS which affect me personally, I can believe be split into three categories:- Medical, personal and professional. While there may be a variety of medical terms, I consider the psychological effects to be how I felt, at the time and as life progressed and how I dealt with these feelings. There are feelings of loss, feeling of frustration and feelings of anger. The one that I that I forgot to mention to the Tukkies students and could in retrospect be the most important is forgiveness. To forgive those you have perceived to have done you wrong is extremely hard because the feeling of unforgiveness festers in your soul and can only make you a miserable so and so to yourself and those to whom you come in contact with. This makes it all the more difficult for the carers to look after you properly. With me it was only prayer and asking our Lord Jesus to help that has brought me thus far and I have a long way to go. There are people in my past that I battle to totally forgive. Love you enemies is a hard creed to live with. I cannot honestly say that I have said “Why me Lord?” but I can understand it bring said by fellow suffers.
Being a typical stiff upper lip Englishman talking about my feelings was not one of my strong points and I find difficult to express my feelings without being what I consider to be a moaning Minnie. This had a very negative effect on my relationships especially with my wife who accused me, quite correctly, opening up more to the Clinical Psychologist than to her. Psychologically, the medical condition is probably easier to deal with as there is a definite object that is causing the problem. Professionally and personally it is more obtuse and effects your feelings more deeply.
When talking about the psychological effects it is mainly about negatives and how I have dealt with them. So please do not think I am just giving you all a litany of complaints but it is about the obstacles that I have met and how I tried to deal with them. Being given the opportunity to talk to you ladies is very much a positive.
The medical effects I have mentioned above but the ramifications of these effects are psychological aspects of MS. As I said at the beginning of this talk, MS apart from being a clinical condition is a condition of losses and gains. The various clinical symptoms mentioned above are all losses to my medical well-being. It is not only the loss of these functions that effect one, but the effect it has on your quality of life. Losing the control of my bladder meant that on occasion I could not stop my bladder from working regardless how much I tried. It was bad enough when in private not to make it to the toilet, but in a public place it is nothing short of humiliating. You just imagine people saying “Look at that Dirty old man” when they pee running down your trousers. Ones whole sense of well-being goes and this also triggers a mini relapse. The loss of your ability to make love to your wife gives one a feeling of inadequacy and loss of manhood. It diminishes your feeling of self-worth. Taking Viagra tablets does not help.
One of the other losses experienced that is highly frustrating is the loss of mobility both physically and not being able to drive. From being a person who led an active life to a person who is now mostly confined to his wheelchair needs a quantum shift both in approach to life, both physically and mentally? My job entailed climbing up and down the sides of tankers while underway at sea and I can assure you it is a long way up the sides of those tankers when in ballast, inspecting holds and tanks on ships and in my private life, running comrades.
The loss of feeling in my left hand means I cannot pick things up and when I can, then I then proceed to drop them! I am left handed and now am unable to write and type properly. I give spellcheck on the computer a hard time but boy do I curse.
The loss of use of my left leg not only makes it very difficult to walk but the leg for instance gets in the way when trying to sit at a table. It catches on the table leg and you swear at the stupid thing for not working correctly.
Like I said it is the little things that cause frustration and cause you to roundly curse MS.
Mentally, I have frequent “Senior Moments”. I occasionally forget the names of people close to me and places. Embarrassing! When I moved into Susan Strijdom, I started to do a law degree through UNISA but as I lost the use left hand, I was unable to write and I found very difficult to speak into a tape recorder. In addition, my memory retention decreased so I could not recall the answers to the questions. It was disappointing to have to stop and it seemed to me just another one of MS’s losses.
The gradual deterioration of my health which is a slow but a continuous process and resulting in the loss of your motor functions is debilitating. You can lose the drive to carry-on as normal because the norm is not what it used to be. I no longer drive and I have to rely on the kindness of others to ferry me around. I can no longer just pop into the car and go to the local tearoom for a loaf of bread and a paper. Frustration and anger are common feelings expressed, also Isolation. You are tied to a very limited environment.
To know that the cause of your condition has not been identified and despite extensive research no cure has been found to date is not easy to live with. I am not sure what is worse, to experience gradual deterioration or a sudden loss due to an accident. The worse thing one can say to a person with MS is how well you are looking. To you I may look in perfect health, or as a puppet used to say on UK TV, “bright eyed and bushy tailed”, but I know that is not the case. No harm was intended by the comment but at the wrong time it can knock you down psychologically.
When I was first diagnosed with MS well-meaning people would send me articles about miracle cures such as bee stings. Imagine allowing a swarm of bees to settle on you and sting away with wild abandon. Not for me. Dagga was another cure, which I understand has some medicinal properties but the local constabulary might think otherwise. There were others. I am a person who believes in the medical profession and unless the particular remedy has not undergone extensive clinical trials then I will stand back.
It was difficult to accept my father of 92 pushing my wheelchair, when as his son I should be pushing him.
Sometimes it is the little things that affect you and not the major problems. People very generously offer help for things that you used to do but your restrictions stop you. When you have to receive help to do the most basic things, in the beginning it is hard to accept and you sometimes get very angry with yourself for being so useless. Mind you, being in a wheelchair is not all bad, you can jump queues at the bank etc and check out what is on the bottom shelves in supermarkets.
My relationship with my wife deteriorated to such an extent that we divorced. It was frustrating for her as she had her own medical problems and was not fit enough to help when I fell. Surprisingly I fell much more in the earlier stages of the disease than now. I am not sure how much she understood or wanted to understand but MS certainly got in the way of our relationship.
Not being able to help as much in the home as I used to because I was not able to stand for any length of time. Doing the dishes meant I lent on the draining board to avoid falling down. When I did the dishes we had not used the best china in fear of breakages. At times I got accused of using MS as an excuse to get out of doing things. This created tension in the household which added to the negative environment. MS does enjoy stress because it has a field day with your body and mind.
Professionally it was it was hard to deal with and still is. I worked in a very specialised field and was one of the most experienced persons in that field in this country.
I kept the company fully informed of my condition and the possible effects it would have on my ability to perform. Although they made all the right noises when push came to a shove, they did not come to the party.
I first had to cancel my commitment to safety inspections. This was not a core function of my job but an addition which brought in both revenue at no extra cost the company and exposure for them in another field of marine safety. When I decided it was unsafe for me to continue I wrote to both Shell and my company. While Shell sent a letter of gratitude, my company merely placed another employee’s name in the company organogram. While MS was not directly the cause, it was because I had MS that such an insensitive mistake was made. I was furious and hurt. I was senior middle management and that is all they cared about me.
My neurologist had been suggesting that I apply to be medically boarded for quite some time but I obstinately refused. Then came the 8th of April 2006 when I fell flat on my face in the middle of Mossel Bay. I was walking along the high street and the next thing I knew I was kissing the concrete. To stand up again I had to crawl across the pavement and use a wall to help me stand up. That was it! I drove home and informed my wife that I was going to apply to be medically boarded. A decision which she fully supported.
When I told head office in Cape Town next morning, the feeling I got from senior management was that I had betrayed them and had not considered the consequences to the company of my decision. This carried on throughout the boarding process and when all the documentation was in place and I left my office I was completely cut off from them. Very shortly after leaving, there was a serious problem at the Mossel pipeline but at no time did they call me for any advice on how to handle the situation. At no time was I given any psychological counselling on what to expect in the future. Not only had I lost my job but also my career. I was also losing my health and most important of all, I was losing my wife. All because of MS! It left a massive void in my life which to this day I am still trying to fill.
When we sold the house in Mossel Bay, we bought into a retirement village in Pretoria. Before moving up, my wife told me she could not live with me anymore as I was not the man she married. So the decision was made that I find a retirement home that will also be able to care for me during my relapses. So I came to Susan Strijdom. You may have heard the Sting song “Englishman in New York”; well I am the Englishman in Pretoria.
When I came to Susan Strijdom, psychologically I was a mess. I had no family in South Africa. My family had been my wife’s family. I was away from my place of work, my work colleagues and under constraint of trade. I do not speak Afrikaans, to my disgrace, and my life experience was far removed from the rest of the residents. In Mossel Bay I went to a charismatic church and they were not much into counselling and here not being able to speak the ‘Taal’ I did not get the full force of the message. I tended mostly to speak with the management staff and they did and do now still allow me to converse in English.
However mentally I have been frustrated. Not being able to continue with my degree meant I lost the mental stimulation it gave. I have never been much of a handyman but used to do Macramé but tying knots one-handed is a problem. So what do I do? I read. I am a bit of a bibliaphobic. I have about four hundred books in my room and I love my kindle.
So what is it like to live with MS? Not fun. For those of you that know Morse code it is 9 dots and a dash. I will leave the rest of you to work it out.
Physically I believe I am slowly coming to terms with my condition even knowing that bit is not going to improve and I am in time going to become more and more dependent on the help from others. Although others do experience pain, I do not which is a blessing. Mentally, I still hanker for things productive to do even knowing that being out of the workplace for over five years a lot could have changed and new regulations in force. I was involved with the Body Corporate in a complex in Umdloti where I own a unit but I am in the process of selling so that will fall away.
So as I said at the beginning, Multiple Sclerosis is about a series of losses and gains with the losses outweighing the gains.
Does your employer provide workplace accommodations due to your MS?