Kathy in High School
I have known Kathy since childhood. She is a few years older than me so we did not have much contact when we were children. Our parents were good friends so we did see each other often. When we were in high school we started travelling to school together, my sister Penny drove.
Witbank Convent Kathy is on the right third row from the front
There was only one English High School in Middelburg the town we grew up in and it started the year after I started high school. We travelled to Witbank every day Kathy and Michelle started travelling with us. In 1985 we were on our way to school I was busy changing the music when I heard my sister say, “Shit what is he doing?” I looked up and shouted....
The next thing I remember was saying, “Shoo we missed him.” Then I felt pain and saw cracked glass and realised we had not. My sister kept asking me if I was alright which was ironic because I had the least injuries. The man driving the other car had a black out unfortunately, he passed away. Everybody except for Kathy blacked out she saw and remembered everything.
Kathy left high school a few months later she was pregnant, in those days it was a ridiculous taboo, you either were married off or you went to “boarding school” for a year and people would snicker and whisper. Kathy got married.
For the next two decades I did not see much of Kathy but my Mom being good friends with her Mom would always update me. In this time Kathy found out that she had MS, got divorced, lost her father and then her mother. Despite all of this she is a wonderfully upbeat person with a great sense of humour. I am so fortunate that Facebook reunited us.
I have been thinking of doing this blog post and the previous one for months. I was not sure how Kathy would respond, on her birthday I asked her permission. I thought she might be annoyed that this would be too intrusive into her life instead she replied,
“Wow Viv that is such an honour thank you so much I am humbled by the gesture go right ahead and do what you do so well thanks couldn’t ask for a better present mwha xx”
Turns out Kathy is a fantastic story teller, she wrote this post, all I did was ask a few questions.
LIVING WITH MS
There is a life after MS and its damn interesting as everyday is a new experience and not only that I’m actually cheap in some ways as I can see a movie over and over never remembering I have already seen it likewise with books only problem is I tend to buy double of other things but they sometime balance out ( ha ha) you are more than welcome to ask anything anytime I will answer truthfully and who knows maybe you can get somethings straight in my head
There is no real known reason why a person gets MS,thats probably the most frustrating as how can you cure something that you have no idea what causes your body to attack itself.
I was 30yrs old and the specialists said I was a very young age to have MS. I had been back and forth to doctors for over a year telling them something is wrong and was told its depression then the hectic life style, so when my specialist said I have MS, my words to him were, “ Thank you”.
He was shocked and said, “Do you realise what you have just said?
I said, “Yes.”
I told him that I knew someone who had it at our church obviously not to the full extent of knowing all it entailed, but finally someone believed me, and said I’m not imagining it and finally there is a name for the strange things happening to me.
I then asked, "What do we do from here?"
I will never forget his facial expression as it was more of shock but he then looked at me and said, “I understand what you mean now and your attitude is going to go a long way towards handling this disease.”
I remember going to church one day and uncle Alf was walking unaided at that time and till the day I die I will never forget what my question to my mother was, "How can that man come to church drunk?"
When I was lying in bed that night of my diagnoses I asked God to forgive me for judging a man without know what he is going through.
You see this is a very deceptive disease there are days you "Look And Feel Normal" so when people find out they say,
“But you look perfectly healthy.”
This makes it pretty difficult for them to understand that one day you wake up and your whole body is scrambled and the simplest task can’t be done.
I must say that I’m sure there are people that believe it’s psychosomatic and to them I can only say, “I fight hard for normality and there are days that no matter how hard I try I can’t do the task and the pain is real.”
As far as how people look at me, it differs, people who meet me treat me normally but when they find out I have MS they do tend to look at me and treat me differently.
The myth that it’s all mind over matter with regards to any illness is still alive and I get angry, as we all have some pain and a deck of cards handed to us, some have a physical problem but there are so many people who have bad and difficult afflictions that we can’t see.
I have been dealt this deck so I am using the cards wisely I hope.
I have NEVER said, “Why me?”
BUT, I did say, “WHY NOW?”
WORST PART OF HAVING MS
My kids were young, I knew a divorce was lying ahead and didn’t know how I was going to raise my sons.
I don’t want a miracle cure I want them to be able to diagnose people earlier as many people go undiagnosed for years and there is no miracle cure but I do believe each of us can help cure our afflictions if we can accept our ailments and work from that.
It was really bad when I realised I was slowly losing my dignity as a woman but by far my worst experience was telling my children that I have a disease that not much is known about and seeing their eyes well up with tears because they were so scared that I wasn’t going to come back home.
When I did come home the pain was unbearable and I tried so hard not so show it but when they ran up and hugged me. I was so grateful and when they would go to sleep at night I could kiss them goodnight and know in the morning I would be able to see them.
I missed out on so much physically with them but they NEVER COMPLAINED.
I knew it had to be hard for them and always wondered how they were treated at school because of me.
WHAT MS HAS CONTRIBUTED TO MY LIFE
My best experience of having MS is that I see the world through the eyes of others who have worse afflictions than I have and am grateful that I can make a difference in someone’s life because I have more empathy.
My short term memory loss is very bad but have realised long term has also been affected there are so may time when we chat about things we did as children and I have no recollection of that.
EFFECT ON MY CHILDREN
Kathy's sons with their cousins when they were little
Now comes the hardest part, how has the MS affected my sons, they will never say it but I know there lives will never be the same. and that I am whatever they do, go to or plan its first “Will mom be able to do it or go there?", that is a hard pill to swallow.
They are young, they need to live their lives to the fullest and not have to worry about me, so yes it has changed their lives forever.
Kathy with her partner Alf they have been together for 8 years.
Having MS has affected my relationships, as you know I got divorced after 17yrs of marriage and I know for a fact one major reason was because I had MS. He told me that he was still young and would not look after a "decrepit" as he so delicately put it.
Any relationship I had after that was easy when I was physically able to be "normal" all was well but when the disease reared its head it the relationship would change.
I probably will always question if the person is with me still out of guilt and pity or just because they do love me.
Another fear of mine is that my sons might get it, although its not hereditary I’m still afraid and would never forgive myself.
FUNNY THINGS THAT HAPPENED
On a lighter side to this illness is when I had to drive I had no one to help me take my sons to school so Gareth my eldest would lift up my leg, push it down on the clutch I would change the gear and then he would lift up my foot off the clutch and so “driving Miss Daisy” got to the school.
Imagine driving 2 or max 30km/hr in the Randburg morning traffic? Needless to say I got a lot of finger language but they got to school.
At times I would carry on driving past the school and my dear children would politely say, “Uhmm, mom you have passed the school, you can stop now we will walk, it’s ok.”
After dropping the boys I drove with great difficulty and only in first gear, I used my hand break to stop and God was looking after me. I never or very seldom had to stop at a traffic light.
We lived in a flat and my downstairs neighbour said he never set his alarm, like clockwork at 6 every morning I would start to make the oats for the boys but never failed to drop the pot first.
He said that he always used that as his alarm and he knew it was 6, so hell I helped someone and saved him from forgetting to set his alarm.
I have gone to work with my dress inside out. Trying to sew a button on one would think is the easiest task, I managed to stitch up the whole shirt and button.
Till today when I go for treatment I never fail to still sms the boys and remind them to wash their shirts. When they were in school, I could only afford two shirts so they had to be washed every day.
Bless my boys when they get the sms to this day, they respond, “Don’t worry Mom already done. My life is rather interesting now that I think about it never a dull moment.
WHEN THE SYMPTOMS STARTED
I was 28 and 29 I went back and forth to the doctors all they kept telling me was that it was stress and depression and that I should pull myself together.
I was fortunate I though, I will never forget it was Easter weekend and my Gran’s birthday was 6th April.
We always got together for her birthday but I just couldn’t go down, I started passing blood and lost control of my bladder. I went to ask Vivian (Kathy’s ex husband has the same name that I have) to take me to the Dr and his words to me were, “I haven’t got time for this shit.”
I went to lie down and I passed out Gareth who was 8yrs old found me and phoned my doctor who said that he must tell Vivian to bring me immediately to the doctor.
I didn’t even know, but he told the doctor what he his father said and they sent an ambulance.
I was scheduled to go to theatre as they wanted to see what "stomach bug" I had.
That night before the physician came in and said he did not want to know about the previous tests I had had but he wanted me to tell him what how I felt from the day I was born until now.
I replied, “I am going to tell you very strange things.”
He said, “Let me be the judge of that, I will use what I need and decide what I don’t.”
After an hour he looked at me and said, “I am cancelling theatre, I know what you have.”
I asked him to tell me but he said he wanted to complete the tests but I begged him. That’s when he said that I have MS.
I was fortunate that on his own he was doing studies on MS and was going every three months to America to find out more. God was looking down on me when this man walked in my life Dr David Le Roux and the tests began lumbar puncture, cat scan etc and on the 6th April, my Gran’s birthday, he and the neurologist sat on my bed and told me.
I will never forget before the tests Dr Le Roux brought me a box of Ferrero Rocher chocolates. He said it’s all he could think of to say thank you for being so thankful for such devastating news, I was just so glad to know I wasn’t lazy or depressed I had a name for my mad and strange symptoms.
EFFECT ON CAREER
Kathy at work
When I was diagnosed I had just been promoted to running the admin of three major companies in Randburg.
I had only worked a week in my new office and thought all that I worked for was finally paying off. Then came the news, my boss was so generous that he kept me on the books even though I could not work as I was more in hospital.
He gave me six month’s salary and somehow organised a policy for me that I had never contributed to that paid me R20,000 but I could not do my job anymore and Vivian was more out of jobs than working.
As I got stronger I tried to look for work but the minute I mentioned MS, I wasn’t even given a chance.
When I phoned for the job gave brief description of what I could do I was asked to come in to the interview, but when I got there with my crutch and they saw MS, I wasn’t even really interviewed.
The result was I would do odd little jobs to supplement my income, the boys went to stay with my parents as it was getting difficult to look after them physically and financially.
Then I was fortunate to get a job at doctors surgery, I was their patient and they needed a bookkeeper so the door opened for me.
They would give me my drips and medication for free as I had no medical aid, then I moved back to Middelburg after my father passed away.
I never even got to go to interviews my MS was the problem, but the government ruled that you had to have x amount of black,x amount of whites and x amount of disabled people working for a company, for the first time in years my disease got me a job at Nashua because they needed to employ another disabled person. I must say that as far as work goes I think because people assume you are in a wheelchair and handicapped you couldn’t do your job so I would say overall it was held against me, they view you as a person who they would have to help around physically and somehow that you are mentally challenged. It is plain ignorance.
Eventually I had to leave Nashua as the illness got too bad and I said if I couldn’t do my job 100 percent then I would leave. I am working for my boyfriend who’s name is Alf. I started off working full time then had to change to half day but with the new developments I’m not sure how long I could do it but I remain positive, it’s even difficult for him to understand how I can be fine one day and next day I can’t walk, so it’s a bit of a strain on not only our relationship and work at times.
The pain is constant especially sitting but I have got used to it. I also have fybromyalgia that flares up and that is very painful. Fybromyalgia is a pain of an unknown source it like rhuematism but I have it in my muscles there is no cure I get strong pain injections but that helps a bit.
When I was diagnosed my Dr got me in contact with the MS Society which was the best thing that could have happened, it’s not funded by the government so all donations are welcome.
In the beginning they helped me immensely by giving me information for newly diagnosed patients also if you agree you are put on the registry so they can keep track on the rate of diagnosed patients etc.
The first thing a person does is go onto internet etc to get information, well that is good but if you read everything you have a very grim outlook on your life ahead.
What I did was read about the disease and as symptoms would happen I checked to see if it was part of MS or not.
This is my way of coping, I did get in contact with other MS patients as they have support groups I did keep in touch and I attended "chat" sessions but found that I got more depressed.
I had a really bad outlook and probably had I continued I would have felt sorry for myself and the diseases would have got the best of me.
However I must say there are people who do benefit from it so for them I’m grateful that they have and outlet. The one friend I made told me of her experience in the 10years it took for them to diagnose her she was told that she suffered from the same things such as depression etc, but the worst of all is when they realised there was a bigger problem a NEUROLOGIST told her she had a brain tumour and for a YEAR she walked with this fear as they couldn't find the tumour, she landed up with my PHYSICIAN who diagnosed her.
As you can gather I was really fortunate to get the diagnosis so "early" and the experience I had those years was not positive for the patients of MS as doctors knew very little about it, now because there is more awareness its better, but a definite negative feedback from patients as to diagnosis and the way they were treated.
It took me more than three months to pluck up the courage to tell my boys and that was only because my mother said they needed to know. I thought I was protecting them by hiding the fact that it’s a disease for life.I thought I could just tell them mommy is going to get better its just going to take a little longer, then my mother reminded me of what I thought of Uncle Alf coming to church drunk. I sat them down and told them as best as I knew how, I saw the pain in their eyes and the fear that Mommy might was dying, the next thing my eldest son said:
"Oh mom is that why you drop things and walk into things? I thought maybe you were drinking."
WOW THAT HIT ME, Here is me thinking I was protecting my sons yet they were fearing other things, so thanks Mom for your wisdom.
I remember telling my mother the day before she passed away when she had her last lucid moment that she must worry about me she can let go and rest I’m ok and she said,
" I won’t be here for your birthday this year."
I told her that I was ok and the boys were strong enough to handle her passing and my illness and she smiled and the next morning she never opened her eyes. I know she fought as hard as she could and she never stopped worrying about me and the boys but that Saturday she was at peace I saw it in her smile but it still is hard.
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