The story of how, in 1996, at the age of 44 my world, in the blink of an eye, was stripped from me by acquired chemical disability.
It was 28th June, 1996, I had just turned 44, we were installing our first ever PC network, the end of financial year was about to hit like a category 3 cyclone and next week we were going live with a totally new Mainframe computer system. As Information Technology Administrator I was at the middle of this technological tempest but this "wog" I seemed to be getting each year lately was back again, this time with a vengeance.
I just could not shake this hacking cough, sore watery eyes, congestion, laryngitis, exhaustion, malaise and constant sweats. "A virus" or bronchitis seemed to be the common consensus of several local doctors at various times or maybe just a type of hay fever or seasonal allergy.
However I began to notice other odd changes and get a bit concerned about my general health. What’s more, my eyesight problems were worse than ever. After these next couple of weeks I was definitely going to take some time off to recuperate and get a thorough checkup.
It was the same day my boss told me both he and the CEO were very concerned about my health and suggested I take time off notwithstanding the workload and approaching deadlines. The next morning as I tried to gather up my flagging strength for another day, and failed miserably, I knew he was right.
Thus ended my 26-year career in Local Government and probably any hope of future employment. My life, and that of my family took a ninety degree turn and careened off into an uncertain future. But had I waited -even those few extra weeks - I possibly may have had no future.
It turned out, after much investigation, I displayed nearly all the classic symptoms of chronic pesticide poisoning (potentially fatal). The symptoms and their timing coincided with pesticides which, unknown to me, were used to "bomb" the office and ceiling areas each year. However although I started to improve almost as soon as I stayed away from the office I have been left a lasting legacy – Multiple Chemical Sensitivity (MCS).
MCS is not the scientific name – there is, as yet, no officially recognised or agreed scientific or medical name – rather it is the name being used by a rapidly increasing army of sufferers worldwide and by the doctors trying to grapple with this silent epidemic for which they have no cure.
Basically victims of MCS become very sick when exposed to even minute amounts of a wide variety of chemicals. Chemicals found in, and given off by, carpets, glues, cleansers, disinfectants, polishes, lubricants, paper, inks, photocopying, man made fabrics, pesticides, plastics, electronic equipment, foam rubber, artificial food additives, paints, soaps, hair care products, deodorants and perfumes, cigarette smoke, petrols and oils. In fact just about every product of the 20th Century. It also usually applies to anything that has become contaminated by those products.
The only known method of alleviating the debilitating and disabling effects of MCS involves stringent avoidance of those chemicals to which the victim reacts. For victims of severe MCS, such as myself, who react excessively to a very wide-ranging list of chemicals and products, this means almost total isolation from the modern world.
Some people choose to opt out of modern day life and enjoy it, but for those of us who have become chemically disabled it is a vastly different story. You see, the 20th Century is where my wife works. It is where my children go to school, where my 10 year old daughter took part in her first ballet concert and starred in her first school concert. Where she sings with the school choir and solo and speaks at eisteddfods. Where my 18 year old son participated in his first school musical, eisteddfods, youth group church services, and attends University. Where my family go to church and the cinema. Where the entire medical profession work and have their facilities; all the educational facilities, banks, shops and offices are; all the planes, trains and buses are. Where all our friends and the rest of our families live and work and socialise. And I cannot even visit it, let alone live in it.
What’s more the 21st Century is where my children will raise their families and without some radical changes I will be locked out of that also.
It is the rare friend or professional who will take the time and effort to step out of the 20th Century to visit me in the place I live. And although my family do not have MCS it is sad to see them torn between their world and mine. It seems sometimes they must share my exile as invitations and visits dry up.
I live in what is basically a large, ill-defined, and for the most part invisible, bubble with my specially modified house at its centre. On a good day, if I am careful, it extends a half-day journey in the open air - I must return to my house each night - there is nowhere else I can live. Neither can I spend time in any other building or house save for a couple of particular food preparation premises where I can, for the moment - ever so briefly - step inside.
Outside or inside this vague bubble is a chemical minefield. Survival relies on adherence to rules - strict rules - many rules. Rules about where you may and may not go, what you can eat, wear, use and read and what you cannot. What you can and can’t do, and what you must do, and for how long. How close others can come and when. And the list goes on.
The rules are not negotiable nor always logical, they just exist. For me contravention of the rules - by myself or my family - is punishable by sometimes immediate, sometimes delayed and protracted - but always severe - coughing, choking, gagging, vomiting, constricted breathing, loss of voice, nausea, headaches, weakness, malaise, blurred vision, double vision, palpitations, pounding heartbeat and/or several other serious reactions.
The rules hold no cure, they simply allow me to maintain a semblance of health and normality. But the bubble and the rules are invisible to most people. If they could see the bubble, touch the walls of my prison, perhaps they might begin to understand. But most see only the distance I keep and not the gossamer wall that enforces it, the empty chair but not the mist that keeps it empty. They see me briefly (and it must be briefly) in the street but do not see the vaporous guards at every door I pass.
But mine is just one case of many and I still have much to be thankful for. I have been given a life sentence, but it could just as easily have been a death sentence.
Your soon going to be hearing a lot more about MCS. However I believe I speak for most of the chemically disabled when I say we do not seek your pity, but rather recognition and understanding of our plight. For the key lies in your hands. MCS is not our prison. Our prison is the gossamer walls of chemicals that surround us. The sea of chemicals in which the rest of the world still lives and works.
But perhaps more importantly, we are also speaking up because we are the first warning, we are the alarm. In the coalmine of the 21st Century we are the canaries – and we have stopped singing!
D.J. Ludlow Copyright 1999
I share your feelings...Just look at what we have done to our own planet...I dont want to insult you by saying that I am sorry for you. I would rather say that I am proud of you to think of bringing this hideous happening in your life out in the forefront. At least a few of us who read this would now know the value of a cleaner environment and perhaps may strive for it in some small way and perhaps, then, at some point in time, the canaries may sing again!!
Reviewed by Linda Hill
7/9/2003
Informative, profound write
about a heartbreaking disease,
my friend. You have opened my
eyes today. I am a nursing
assistant and my goal is helping
people. This has taught me alot.
God bless you, kind friend.
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It was 28th June, 1996, I had just turned 44, we were installing our first ever PC network, the end of financial year was about to hit like a category 3 cyclone and next week we were going live with a totally new Mainframe computer system. As Information Technology Administrator I was at the middle of this technological tempest but this "wog" I seemed to be getting each year lately was back again, this time with a vengeance.
