Global Recognition Campaign for Multiple Chemical Sensitivity

 
I am a 71 year old citizen of the U.S., currently living in a retirement community in North Central Florida, though in a long and, until recently, active life I have lived in various parts of the United States, Europe, and Asia as well.

To dispel the widely held opinion that those of us with MCS are lazy hypochondriacs, seeking an escape from responsibility, I had a twenty year career in the U. S. Navy, then went to university in England to read archaeology and worked in the field for several years as everything from excavator to director.  In addition, I have at various times been a yacht skipper in the Mediterranean, a diver, mountain climber, built and remodelled a couple of houses, ran my own locksmith business, was chief investigator for the Navy Exchange System in Southern Italy, have been called a pioneer in underwater archaeology, restored antique furniture, designed and built custom furniture, was the historic woodworker in two living history museums, taught marksmanship while serving as the only Navy member and captain of an Army post rifle team, a driver/courier for Securicor in England, served as relief miller at a water-driven 18th century museum gristmill, did two seasons as Medical Investigating Officer at Butlin's Holiday Camp in North Wales, and completed ninety semester hours of university by correspondence course in my spare time.

I was once asked by a friend if I was certain I really wanted to be healed of MCS and what would I do if I was healed?  She also asked if having MCS made me feel "special".  People get the strangest ideas when confronted with things they don't understand.

I was first diagnosed with hypersensitivity to a variety of chemicals (the term, "Multiple Chemical Sensitivity" or MCS, came along somewhat later) in 1978 after a long series of medical tests eliminated the several diseases indicated by the symptoms I had.  My doctor was puzzled by the results of the tests until I happened to mention the two pulpmills on my home island.  I was luckier than most in those days as this doctor had considerable experience with similar cases and knew about the effects of industrial pollution on the human body.  This diagnosis was again confirmed by Dr. X , an environmental illness specialist, in 1994.  He offered no cure, but a detoxification programme of some six to seven weeks at $95.00 a day, with an annual "booster" of a week or so.  Of course, these treatments are not covered by medical insurance as is the case with most alternative treatments.

Once this initial diagnosis was made I was told that the only recourse was to move and find a place well away from any such mills.  His suggestion was a west coast location where the prevailing winds were from the ocean.  This began a long odyssey to find that safe place.

In the summer of 1980, I took my family to my wife's home in North Wales and we spent two months looking for an affordable place to live, but had to give up that idea due to high cost of properties and a very high mortgage rate.  It was very frustrating as my condition had improved considerably and I had no episodes during our time there.  In fact, after only a couple of weeks I found I was able to go for long walks in the mountains without getting tired, and we drove all over North Wales and Southwest England looking at properties.  This was a very different situation from my condition by the time we had left Florida when I could not even go up a flight of stairs without resting halfway up even on my "good" days.

I returned to the U. S. alone and spent some six weeks checking out various places until I found a small town in Alabama where there was no local industry.  After a week there without any episodes, I bought a house and sent for my family.

I set up a locksmith business run out of my home and also an antique restoration service to supplement my Navy retirement and things went well for three or four months until I began having the same symptoms as before.  Noting the wind direction when these occurred I made inquiries and learned there was a pulp mill some thirty miles downwind.  Unfortunately, none of the local doctors believed my earlier diagnosis and thought I was afflicted by one of a variety of conditions, depending upon their specialty, i.e., cardiac specialists were certain I had some sort of heart condition they couldn't quite pin down, pulmonary specialists were just as certain I had a lung condition, etc., but their tests all proved negative.  One of the diagnoses was panic attacks.  That is putting things backwards as the attacks come first and then when one finds nothing can be done about them the panic sets in.  At one of the customary referrals to a psychiatrist that seems to come when the doctors can find no cause they understand, the psychiatrist asked if I had ever contemplated suicide.  My reply was simple,  "If this had been happening to you for 18 years and nobody could do anything about it, wouldn't you?"

One of our acquaintances in Alabama who was a psychologist told my wife it was his opinion that my problem was purely psychological, a physical manifestation of a desire to avoid unpleasant situations by having to take to my bed.  As it turned out, this planted a seed that was to bear bitter fruit in the future.

My condition worsened steadily until I was in more or less the same state I had been back in Florida and we began thinking about moving again though I had no idea where to go as my research showed few places where there were no pollution sources within a radius of fifty miles, except possibly the Southwest.  This would be no good as allergy tests had shown only one thing to which I was actually allergic -- mesquite.  Not quite the sort of allergy one wants to have if he is thinking of living in that area.

Then, in the summer of 1982, we had a letter from my wife's parents asking if we would be interested in moving into their home in North Wales as they were finding it too much to take care of.  It was two miles out of town and on the coast, which seemed ideal, particularly in view of the experience we had had during our visit two years earlier,  so we agreed and made the move, arriving in early October.

Unfortunately, by this time my panoply of "triggers" had expanded to include coal fumes (there was a coal-fired electricity generation facility in Alabama, which had starting causing problems during our time there) so when winter came to Wales I found it virtually impossible to go into town and evenings at home with a coal fire in the fireplace were not particulary pleasant either.

To make a long story a little shorter, suffice it to say that the return of my symptoms was not welcomed in the combined household and the seed planted by our psychologist "friend" in Alabama lead to my being informed my presence was not required and I returned to the U. S. in July of 1985.  I have heard it said the divorce rate among those with MCS is extremely high.

I have never been able to find a safe place to live and am now up to an average of about twenty "crash and burn" episodes a month, sometimes two or three in a single day.   I can no longer drive on my own as an attack can occur with little or no warning and it would not be safe for me to try to drive home and in the Florida summer stopping at the side of a lonely road until the attack passes could prove fatal.

Of course, public gatherings and even visits to the homes of friends are fraught with opportunities for disaster, though I can sometimes manage a half hour or so until my voice starts to go and I head for home hopefully to arrive there before the usual "crash and burn" starts.  With MCS everything has a price.

The worst of the many forms in which the attacks manifest is frighteningly similar to a heart attack (chest pains, pain in one or both arms, rapid and irregular heart beats, with "skips" as frequent as every two or three beats).  I had a recent angiogram following a particularly bad episode which showed nothing wrong with the heart and no significant vascular occlusion.  I have asked doctors if there is any way to tell whether I am having a heart attack or just the same old thing and have been informed that the only sure way to tell is to have an angiogram.   I don't think 20 or so angiograms a month would be very pleasant even if one discounts the cost.

Several years ago I had a "crash and burn" just as I arrived at my doctor's office for a routine visit and he did a blood test on the spot.  I don't have the paper now, but as I recall it showed a very high white cell count and hystamines and other infection fighters.  The doctor explained that this was due to confusion of the immune system which interpreted the pollutant as an infection of some sort and reacted to combat it.  Among other things, there were contractions of the smooth muscles with pinching of the autonomic nerves controlling heart beat and breathing, constriction of blood vessels leading to the brain and a host of other unpleasant effects.  He also said the reason none of this had been detected before is the ephemeral nature of the reaction and the results would be totally different within ten or fifteen minutes after removal from the exposure either by going to a different location or entering a building away from the outside air and if he did another blood test now, none of these things would show up.

I have tried all sorts of treatments including several alternatives such as acupuncture and reflexology, none of which have had any effect.  I even tried homeopathics which only made things worse, as might be expected since I react to very low levels of toxic exposure anyway.  I cannot take most pain medicines as they contain chemicals that cause a "crash and burn" and many capsules use a petroleum based outer covering.  The only relief I get is from a 5mg Diazepam tablet used as a muscle relaxer at the onset of an episode.  This will not prevent a reaction, but lessens the pain and discomfort of muscle spasms and contractions somewhat after half an hour or so.  They do nothing for the after-effects that come with every episode.

I finally had to stop working altogether in 1993 when the episodes became more frequent and debilitating.  At the time I was the historic woodworker in a living history museum in St. Augustine, Florida and my shop was located about fifty feet from the blacksmith's shop which burned a large amount of charcoal in the course of a day with an open window on that side.  Visitors to my shop would complain about the fumes within five minutes if the wind was blowing from the wrong direction, which it usually did, and I was there eight hours a day, five days a week.

My last trip abroad, to Cornwall in 1996, was a nightmare.  Every airport we passed through seemed to be undergoing refurbishing with miles of new carpet, paint, and drywall in the corridors.  It also happened to be an unseasonably cool May in Cornwall and coal fires were in constant use.  The only place where I had no problem was on a side trip to Winchester, which I later found out is a smoke-free city.  It was glorious, I took a long walk around the town and didn't get winded at all.  At the end of the visit I had to run the gauntlet of airports again to get home and have decided against a repeat.  Now it is hard enough going into our local town with the traffic fumes and odours in the various stores, not to mention the major pollution sources.  Sometimes I will be feeling fine and then get hit between the front door and the car if the winds are from the wrong direction and have to abort the trip.

When I moved to my present location in 1998 I thought it was about as safe as it gets, but have since discovered this is not so.  Although there are only two pulp mills in the area, one about 20 miles to the west and another 50 miles to the north, I have since discovered that a phosphate plant rated as the third biggest producer of pollution in the State of Florida (when you're No. 3 in Florida you are in the Big Leagues) 30 miles to the east.  I used to at least have some good days when the wind was from a southerly direction until a big cement plant was built in the last year or so which also uses old tires as fuel, just to make things a bit more interesting.  I don't think I will move anymore as there seems little point.  A friend I corresponded with through an on-line support forum who had been confined to a "safe room" in his house in Los Angeles, spent six months in a small town in the California mountains, which had no industry, and found that he was much improved and could spend most of his day outdoors; long walks in the countryside, working in the garden, and other things he had been unable to do for a long time -- even did a little outdoor barbecuing now and then -- so he bought a house.  Two months later construction started on an asphalt plant just outside the town.  Seems one just can't win.

Respectfully yours,
Robert, 
Florida, USA

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