Hydrocarbon Poisoning: A Before and After View                                   

Jennifer Duncan

May 2004, 

Previous Activities and Functioning

I had a full, active life prior to suffering an exposure to toxic materials. I tended to keep very busy and active mentally, creatively, and physically. I am a graduate of MIT and hold a masters degree from NYU. I worked for several years as a computer programmer and technical business manager for companies like Viacom and Sesame Street Online. I also ran my own consulting business. My focus tended towards educationally oriented projects (I previously taught high school math, various sciences, computers, and English). Outside of work, I participated in a wide variety of social and physical activities such as music, teaching movement classes, dancing, theater, traveling, scuba, attending events and dining with friends, etc. I grew up overseas and have always appreciated my multicultural background.

 Job Responsibilities

I held the position of Web Publishing Manager at a publisher of university textbooks, and worked as the senior technical member on a demanding database and web platform upgrade. In addition to technical responsibilities, I also addressed business needs. I was hired due to my programming and production experience with a high-end software application (Vignette StoryServer) for dynamic web publishing. The goal was to convert the existing archaic web site and production methods into an efficient and easily updateable system. This required an entire system analysis from the database layer to the customer front-end, followed by a complete redesign of the technical architecture and content creation and management system. After overseeing the review and design phases, I then managed the team responsible for the production and technical implementation of the new site. I fulfilled my duties despite several obstacles and major changes of personnel and resources, and received good reviews. Towards the end of completing the primary production cycle successfully, I received a raise in pay. It was also indicated to me that I was set for a promotion to the level of director and would handle the ongoing growth of the team and processes established.

 Occurrence of Injury

However, around that time I suffered a chemical injury in the workplace due to renovations and maintenance. A new carpet was installed in a poorly ventilated area adjacent to one of my primary working areas, and paint and possibly other materials were applied. After about 8 weeks of exposure to the variety of solvents and fumes, I suffered an acute reaction to the overload of toxins. I was the only woman in the technical group that worked and met in that area. My office was on another floor, so I traveled across the affected area more frequently than any other team member. I believe it can be shown that the building ventilation was generally problematic. My doctor has also pointed out to me that certain families of chemicals mimic female endocrines and therefore affect women more frequently. Lesser body mass resulting in greater concentrations of toxic materials is apparently also an exacerbating factor.  

Symptoms and Medical Information

The results of the chemical exposures were that I experienced headaches, nausea, disorientation, an inability to sleep, and had difficulty eating. My doctors indicate that my breathing, digestion, liver, kidneys, and cognition were among the multiple body systems affected. My early symptoms include becoming blank in the middle of discussions or phone calls. I was confused by simple processes, and could not use a phone or set an alarm clock. I got lost on routes I had traveled frequently and missed my subway stop several times. I lost motor control at times and walked into walls. I could not sleep for hours or days despite extreme exhaustion. After finally managing to fall asleep, I could not wake up fully or function at all for hours. I had difficulty tracking conversations and communicating. I was in such a haze and so disoriented I could not even describe much of what was happening to me. As outlined in my medical records, my basic functioning was severely impaired, and I became more and more overwhelmed by the simplest of daily tasks.  It took several weeks for my doctor to review the situation and diagnose Hydrocarbon Poisoning, accompanied by Multiple Chemical Sensitivity (MCS), Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS) symptoms. Myalgic Encephalomyelitis (ME) and other conditions were later diagnosed by other doctors.  

Employer’s Response

In the meantime, I followed my employer’s instructions and went on short-term disability. As the likely initiating factors began to emerge, my employer repeatedly refused to provide Material Safety and Data Sheets (MSDS) about the materials used in the renovations, despite requests from my doctor and a lawyer. My plan to return to work was extended by a couple of weeks on my doctor's orders due to a setback in my health. He had informed HR of my special needs and requested that appropriate accommodations be made for my return. However, I was abruptly fired with the reason given that the company was reorganizing the department for economic reasons, although the only other change besides the elimination of my position was the creation of a job equivalent to mine, rated at the next level up, in line with the promotion I had been expecting. My company has not provided me with any compensation for my injuries, although my benefits apparently included more short-term as well as long-term disability insurance. I was extremely ill and cognitively unable to manage researching and following up properly on the situation at the time. I had lost my ability to read and was overwhelmed by one-page forms. On a lawyer's advice, I did try to find work over the next few months and attempted a freelance project, but could not fully complete it successfully or on time. I required assistance to accomplish what I did, and the effort exacerbated my condition and caused a major setback. I have been unable to work at all since then. 

Reaction to Toxic Substances

Almost every time I leave my residence, I encounter materials which cause a toxic reaction in me, such as exhaust from motor vehicles; fumes from new carpets, upholstery, or certain plastics (including formaldehyde, VOCs, PCBs); newly applied varnishes, solvents, adhesives, paints and the like; pesticides and herbicides; secondary smoke; disinfectants, detergents, and other cleaning chemicals; perfumes, fragrances, and air fresheners; dry-cleaning; marking pens; etc. The symptoms I experience after an exposure are severe, and include painful headaches, difficulty breathing, nausea, muscle aches and shaking, burning joint pain, loss of coordination, disorientation, severe confusion and fogginess, fatigue combined with a sense of agitation and hyper-activity, and an inability to fall asleep accompanied by utter exhaustion. It takes several days or weeks to recover from this state, depending on the severity of the exposure. 

Current Functioning

Even when not suffering from a direct exposure, every other aspect of my daily life has been affected in the extreme. I rely on help from a home health aide to assist with my daily needs, such as shopping, cooking, cleaning, and performing errands. I frequently cannot process information, follow-through on a course of action, or respond to the external world in a normal fashion. My joints are painful, and almost any movement causes a flare-up of agonizing pain, similar to rheumatoid arthritis. I often cannot walk across a room, and on one occasion when away from my small apartment for a few days I required a motorized vehicle to get around the premises. I have difficulty grasping objects, and fumble and drop things. My treatment plan includes eating a special diet of pesticide- and preservative-free foods, limited to about a dozen items. I am homebound and rarely leave my residence (no more than once or twice a month). When I absolutely have to go out, I must use a respirator and carry backup oxygen to reduce the debilitating effects of substances noxious to me. At home I use air filters constantly, as instructed by my doctor. I cannot use many common products such as regular soap or shampoo. I cannot attend appointments alone, but require accompaniment and transportation assistance. My cognitive abilities have been negatively affected. I have difficulty with memory, concentrating, learning new things, listening, analyzing, reading, and writing. I forget ordinary vocabulary and cannot put short sentences together. I cannot write letters or make business phone calls without assistance. I become unduly confused over simple tasks and problems. When strained, I stutter and become dyslexic. Light chores or efforts that require mild concentration wear me out. I often cannot return phone calls for days or even weeks due to the exertion that paying attention takes. After receiving a visitor or working on a form, I often need a day or two to recuperate. I see only a few people once or twice a week, who come to my residence help me. I have become quite isolated and can only rarely participate in social events.  I am struggling to make ends meet, and am worried about losing my residence. 

Long Term Effects

This condition has resulted in significant loss and destroyed my intentions and plans for life. It’s not unreasonable to expect that by now I would have solidly established my career, paid my educational loans, and collected savings to go towards a house, a family, traveling, further studies, and retirement. Instead I am in debt and poor health, unable to care for and support even myself, without the benefits of my educational investments, unable to participate in the community  around me or contribute to its economic life. My ability to have children may be permanently compromised. I will always have concerns about other long-term effects on my health, since my doctor has informed me that MCS is a common precursor illness for cancer, multiple sclerosis (MS), and the like. This is not the life I was building towards. I understand that unforeseen, misfortunate events happen to people. I also appreciate the value of keeping a positive attitude and always continuing to learn from any circumstances life may present. However, I have found that there is little to recommend about this situation, and I cannot see that there is much benefit from being faced with this incredible hardship.  I offer my story in the hopes that others may benefit, and learn either how to avoid a similar injury, or gain understanding and compassion for someone else suffering from this nightmarish condition. 

This letter took 4 months to compose and required conceptual & typing help from 2 assistants.

No part may be released to another or reproduced without written permission.

© 2003, 2004 J. Duncan, jennerator.com

(This story was posted with the written permission of Jennifer)

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