Terry’s Story: Developing Fragrance Sensitivity in the Gulf War

 

The following account is a compilation of the story of a Florida veteran as it appears in my 1998 book Casualties of Progress: Personal Histories from the Chemically Sensitive and in my 2000 documentary, Gulf War Syndrome: Aftermath of a Toxic Battlefield.

 

I was in the Marine Corps from 1960 to 1966. When I left the corps, I got a job with a major railroad company as a steel worker building rail cars. I started a family and earned a college degree by attending classes at night while I worked for the railroad.

In November 1990, I was activated with my Army National Guard unit and sent to the Persian Gulf. I served both as a medic and as an intelligence NCO. Prior to the Gulf War, I was in perfect health and in great physical condition. Now I’m in a wheelchair.

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We were stationed In Riyadh in Saudi Arabia for much of the Gulf War. There were lots of scud attacks on Riyadh. Almost every time there was a scud attack, our chemical alarms would go off, but higher authorities claimed the instruments were all defective and were giving us false alarms.

When we returned to the United States, we received the most minimal physical you could ever give to servicemen returning from war. I went back to work with the railroad but continued to serve in the Army National Guard. After returning to work, I started having problems that I had never had before. The automatic air freshener dispenser in our office was making me sick, as were paint and diesel fumes. I started having panic attacks, and I was having problems concentrating on my work and other activities. I no longer could climb to the top of railroad cars. One morning I had a terrible headache, a stiff neck, and a very high fever. I was rushed to the emergency room, where they did a spinal tap. The doctor did not find anything, but he treated me for spinal meningitis. 

Everything seemed to get worse from that point on. I was falling down at work for no good reason. In January 1993, I could not pass the Army Physical Fitness Test and had to retire from the Army National Guard. That year I started using a cane because my right ankle and leg just kept giving way as I walked.

After I left the National Guard, I went to the VA hospital in my area and signed up for the Gulf War Registry and took the Gulf War Veterans’ Physical. I was placed in the hospital for one week. My condition got worse, and in March 1993, I was sent to the VA hospital in Washington, D.C., for more tests. I was only supposed to stay in the hospital for seven to ten days, but they kept me there for six weeks.

My discharge summary was panic disorder, degenerative joint disease, severe high frequency hearing lost in right ear, allergic rhinitis, emphysema, high cholesterol, chronic fatigue syndrome, possible multiple chemical sensitivity, mild patchy sensory neuropathy of distal nerve segments, and multifocal motor neuropathy with conduction blocks of the ulnar and radial nerves of both arms. The doctors stated regarding all the above medical problems: “etiology unknown.” The doctor who told me I had multiple chemical sensitivity (MCS) said he wasn’t  allowed to write that in the diagnosis—he could only say “possible multiple chemical sensitivity.”    

In 1994, I had to start using two canes, and that worked for about six months. If I happened to smell something like gasoline or perfume, however, it would affect my coordination and I would fall down. Finally, the Veterans Administration gave me a wheelchair, and a couple of years ago they even gave me an electric one because I have a lot of nerve damage in my arms. I can’t complain about the medical care the VA has given me. They have paid for my medications and hospitalizations, even though they claim my problems are not service-connected.       

When I returned home from the VA hospital in Washington, the railroad company would not let me return to work and retired me on disability. I could not understand what was going on because I had always been very healthy before I went to the Gulf War. I contacted my VA representative to file a claim for service connected disability, but I have not received anything from the VA Disability Board. Other vets who worked right beside me in the Gulf War have received disability compensation for diagnoses like fibromyalgia and chronic fatigue syndrome, but I don’t know of anyone who has been given a disability award for MCS.

I have had several other medical problems in the past eight years.  I have skin rashes and sores, stomach problems, and chronic pain.  Before the Gulf War, I would very seldom take an aspirin or any other kind of medication. I worked very hard all the time and never took time off from work because of illness. Now I take twenty-five pills a day. I am no longer permitted to drive, and I am having a very hard time adjusting to that.

My problems with chemical sensitivity began right after the Gulf War. I still cannot pump gas or diesel fuel; my wife pumps it while I sit in the car or truck with the windows rolled up. The ink smell on a fresh newspaper really bothers me. I have to watch what type of shampoo I use or I will break out in a bad rash. Some perfumes also give me a bad reaction. I hate it. Somewhere in a magazine you’ll be reading, they’ll have a perfume advertisement, and when you open that page it releases that perfume. I had it hit me one time. I was just going through the magazine, I opened it up and this was apparently a pretty potent perfume that put me immediately into an asthmatic attack.

I had only just been diagnosed with asthma since I came back from over there. The asthma attack I had increased during the night. I used my inhalers, went to bed anyway. Then my breathing got extremely bad; they sent a rescue unit to get me, and in the rescue unit I stopped breathing three times. They took me straight back into the emergency room and continued giving me treatments. About the time they thought I’d be all right I’d quit breathing again. It took a couple of days to get me back to breathing like I was supposed to. All because of a dadburn little advertisement for a perfume. Cost me a couple of days in the hospital.

I had a $580 rescue bill. I had an over $2,000 emergency room bill, and approximately a $3,000 hospital bill. I’m not getting any assistance. I don’t have no Medicare because I haven’t been approved yet, and I’m not getting anything from the government. I had to pay these bills myself.

I have a discharge paper from Washington, DC, that says I have possible multiple chemical sensitivity. I was going down, I applied for Medicare, and the Social Security people send you to their doctors. Casual conversation with the doctor before he started his examination. I mentioned multiple chemical sensitivity. The doctor went crazy on me. Really flew off on me. He says: “I’m going to tell you right now, sir, you just lost all your credibility with me. There’s no such thing as multiple chemical sensitivity. And sure enough I got turned down. I don’t know what kind of a report he wrote. I have, however, been on Social Security disability payments since 1995.

I had another bad reaction to perfume when I went to my grandson’s kindergarten graduation. I had to be carried out of the building because someone was wearing a perfume that was so strong that I could not breathe and got very sick. 

It is very hard living with multiple chemical sensitivity because there are so many chemicals that can make you really sick very fast. To me, MCS is not a joke and should not be taken lightly. It’s had a terrible effect on my life.