Statement of Joellen Lawson, Fairfield, CT
My name is Joellen Lawson and I was a Special Education teacher at McKinley School from 1991-1998. This is the elementary school in Fairfield, CT that was permanently shut down in October 2000 due to severe mold contamination. Although it is painful to talk about I am here today because I feel a strong moral obligation to share how long-term and acute mold exposure ended my twenty-three year teaching career and has seriously damaged my health and financial security. Mine is a cautionary tale that warns us of what can happen in the absence of enforceable air quality standards. My case demonstrates that there are not enough safeguards to guarantee teachers and students a safe and healthy environment to work in. Thankfully those of you in the legislature are acknowledging and addressing these important issues as you seek solutions to remedy the problem of poor air quality in the schools. I only wish the current level of public awareness and the legislative initiatives being proposed had been established a decade ago.
In 1991 I joined the faculty at McKinley as a part time Special Ed. Teacher, I had just completed my second master’s degree (ironically in Health Education) and was taking additional courses in order to become certified in Elementary Education. My volunteer work in the community included presenting workshops for statewide conferences for CACLD (CT Association for Children with Learning Disabilities) and serving on the board of directors for the ADD Society of Feld County (a support group for parents of children with attention deficit disorder). My expertise in teaching children with ADD was the focus of my work as a seminar leader for the American Institute for Creative Education as well as an educational consultant and tutor for the ADD Institute of Westport. So in summary, I was very invested in a career I would have described as dynamic, multifaceted and very fulfilling.
My first recollection of not feeling well occurred during the 1992-1993 school year. That particular year I was teaching in room 118 which doesn’t have any windows. By noon each day I was suffering from headaches, burning eyes, mental fatigue and the beginnings of a chronic cough. I vividly recall a conversation I had with my principal regarding my health problems that appeared to be caused by “something” in that room. Fortunately, by the end of the school year the principal did honor my request for a transfer to a classroom with a window.
From 1993-1997, my classroom was a very small office in the library with a window. At first, my symptoms did improve. In 1994 my position was increased to full-time and as I began to spend more time in the building my cough worsened and new symptoms emerged. Now in addition to burning eyes, my tongue was usually swollen; I had visible hair loss on my head and my eyelashes started falling out. By 1995-1996, the coughing spells worsened and during one of them I herniated a disk. More neuromuscular difficulties included muscle spasms, tingling sensations and occasional tremors. I did consult several doctors, but blood tests and lung X-rays failed to pinpoint a cause. Finally, in September 1997 I was delighted to be assigned to a standard sized classroom with ample closets and windows. The previous occupant had packed the closets with books, kits and teaching materials. It wasn’t until May of 1998 I had the time to clean them out. Over the course of four days, I removed twenty bags of mold-contaminated materials. As I do have a history of allergies and asthma I did expect some exacerbation of my symptoms. However, I never anticipated the long-term consequences that would result. By the second day of cleaning I asked the custodian for help because I was getting dizzy and quite sick to my stomach. The following Monday I awoke at 1 am and the room was spinning. For the next ten hours I suffered from intense vertigo, diarrhea, vomiting and tremors. When I was admitted to Danbury Hospital’s emergency room, the attending physician told me that a virus or food poisoning were the likely culprits for those ailments after I proposed my theory that the moldy materials could have triggered the incident.
Two days after my trip to the emergency room I felt compelled to return to work to finish my end of the year obligations. Completing job tasks was hampered by dizziness, intermittent nausea and the sensation that my brain was swollen. Little did I suspect that after June 1, 1998 my life would never be the same. At no time before this had I felt so seriously ill. Yet, I still expected to fully recover over time. So regaining my health was the goal for the summer of 1998.
By late June my symptoms not only persisted, they were worse. The dizziness had not abated and was further complicated by a very severe ear infection. No hearing loss was ever detected by the ENT, but since then I have difficulty tolerating a normal sound volume. Going to a mall or eating out at a restaurant can be physically debilitating because of my inability to cope with the noise level characteristic of such places. Other sensory disturbances included increased sensitivity to light, an inability to control eye tracking and intermittent blurring. Balance problems made walking a task that was demanding and required considerable effort. There were days when the floor appeared tipped to one side. My kinesthetic experience could be best expressed as feeling as though I was still in motion while I was at rest. By August, the consensus of two primary care physicians, an ENT and a neurologist was that I was afflicted with a “vestibular dysfunction”. The vestibular system consists of the brain, spinal cord, eyes, skin, muscles, joints of the body and inner ear. It is responsible for maintaining one’s sense of equilibrium or balance. However, a vestibular dysfunction could not account for other symptoms such as night sweats, low-grade fevers, swollen glands, an excessive need to urinate, a sharp pain behind my eyes and terrible migraine headaches. Two peculiar symptoms: a black growth on my tongue and mild bleeding from my ears were also reported to my doctors.
The primary care physician who would eventually fill out my disability paperwork and coordinate input from the many specialists who evaluated my symptoms kept extremely detailed records. In August 1998 she did record my comments about teaching in a moldy classroom and that my most debilitating symptoms manifested within days of removing moldy materials from the classroom. Not one of the well meaning medical professionals involved in my case recognized the significance of this information until nearly three years later.
Assured by my doctors that a vestibular dysfunction would repair itself within a two-three month period, I attempted to return to work in October 1998. Had I truly understood my illness I would have realized the personal purchase of a HEPA filter and half-day schedule would not protect me from another assault to my immune system. Within weeks I suffered another major episode of vertigo and simultaneous vomiting and diarrhea followed by heart palpitations and shortness of breath. For the first time I was painfully aware that my cognitive functioning, especially short term memory problems were interfering with my ability to communicate with others and teach effectively. Word retrieval and multitasking were excruciatingly difficult. Finally, I accepted that I could not will myself into weilness and a formal medical leave of absence was necessary. I was granted a medical leave of absence for the 1999-2000 and 2000-2001 school years. During my medical leave my primary care physician ordered extensive medical testing to rule out everything from multiple sclerosis to a brain or vestibular tumor to Lyme’s disease.
The closing of McKinley School in October 2000 was a turning point. Soon after I contacted Dr. Eileen Storey (UCONN Occupational Medicine), John Dorland (FEA president) and Mary Fitzgerald (Pupil Personnel for Ffld Public Schools) to share my story. The complex health, career, financial and legal implications raised by the shutdown of McKinley were totally overwhelming. I began by addressing those questions most pertinent to my health and career issues. I wondered: Had my illness been preventable? Had my thoughts about the mold in my classroom which had been dismissed and ignored been on target from the beginning? If this were true, would there be changes in my prognosis and treatment? Could there be magic bullet that would enable me to return to work in September 2001 when my medical leave would have expired?
Initially, I did not speak out publicly about these matters because without further proof I believed it would be irresponsible to alarm those McKinley teachers, parents and students who were already traumatized by what had taken place. By the spring of 20011 was personally convinced by mounting evidence that my illness directly resulted from breathing in toxic mold spores while teaching at McKinley. I utilized numerous resources before coming to this conclusion although my appointments with Dr. John Santilli were pivotal. Dr. Santilli had already treated fifty McKinley staffers and students who became ill from mold exposure. In collaboration with a mold toxicologist, he had analyzed the results of air samples taken from McKinley. After extensively reviewing my medical records, Dr. Santilli confirmed that the respiratory, digestive, neurological and sensory disturbances I had been suffering from were consistent with exposure to the high levels of mold (stachybotrys, aspergilllus and penicillum) found in classrooms I had been teaching in during my seven years at McKinley.
The good news was that I finally had some definitive answers. The bad news was there would be no magic bullet to cure me and Dr. Santilli could not recommend I return to work in the fall. Despite all the evidence to the contrary, I had been clinging to the hope of holding onto my tenure in Fairfield. My disappointment was further compounded when my request to extend my medical leave was denied by officials in Fairfield. It was devastating to file for a disability retirement at the age of forty- six some twenty years early.
As I sorted out my health and career issues, I was also wrestling with legal and financial ones. In November 2000 my husband and I met with a workman’s compensation attorney who warned us that proving an environmentally triggered illness would be very challenging especially because at that time I lacked a medical advocate to back me up. She also cited probable complications with statute of limitation laws as 2 Y2 years had transpired since the onset of my disabling condition. Later other attorneys declined to take my case because of the statute of limitations.
This legal predicament leaves me dealing with serious financial consequences. Despite the disability payments I receive, my income has been substantially reduced and concern for my long-term financial security is a considerable source of anxiety. Living on a fixed, reduced income places stringent restrictions on my lifestyle and denies me access to resources that could contribute to my recovery. For example, Dr. Santilli suggested I hire someone to help clean my house in order to avoid contact with allergens that testing has shown to compromise my immune system. However, I simply can no longer afford such luxuries.
Now if we fast forward to my current situation, it is clear that my debilitating condition has robbed me of my professional identity and significantly altered my personal and social life. Essentially I am housebound with the exception of physical therapy or doctor’s appointments which my parents and husband usually drive me to. A tremendous loss of independence comes from not being able to drive a car. Since June 1, 1998 I rarely drive due to safety concerns for myself and others. In order to get behind the wheel of a vehicle one should be able to turn their neck and head from left to right and move their eyes from the rearview mirror to the view of oncoming traffic with ease. I am sure most people take for granted their ability to perform such tasks. In my case I have days when the act of moving my eyes to look up or down can elicit visual blurring, nausea and a loss of balance. This can happen without the introduction of additional demands on my vestibular system such as movement. When this occurs I cope best by remaining as still as possible and aiming my gaze directly in front until the episode is over (which may last minutes, hours or days). At times the vertigo, vomiting, tremors and full body sweats have been so incapacitating that I have been unable to walk from the bedroom to an adjoining bathroom and have had to use a bedpan. During these episodes my husband utilized many vacation days from work because I was unable to care for myself. As you might imagine it is hard to schedule plans due to the highly unpredictable nature of my symptoms as they wax and wane on a day-to-day basis.
Another especially disconcerting component to this cluster of symptoms has been my inability to lay flat, with my head down since June 1, 1998 without considerable discomfort. The discomfort may manifest as severe eye, neck, or headache pain as well as lightheadedness, dizziness, tremors or full-blown vertigo. To compensate I usually sleep on my left side elevated by two pillows. As a result of my inability to lay in a supine position, the quality of my sleep is compromised and I developed adhesive capsilitis in January 2001. Adhesive capsilitis “frozen shoulder” is a painful condition that limits the use of my left arm and shoulder making such tasks such as washing or fixing my hair, tucking in my shirt or almost any task requiring the use of two hands at best, challenging.
My overall stamina is further depleted by increased sensitivity to environmental allergies, shortness of breath and a chronic cough. These respiratory ailments put an end to my favorite hobby, singing, which had been a wonderful source of joy and self-expression during eight years of vocal training. I still miss my weekly voice lessons and performing in two to three recitals each year.
On good days, I am able to do simple chores such as doing dishes, laundry and cooking as long as I take rest breaks every few hours. This is a far cry from the active, physically fit person I once was. In 1991, I practiced yoga regularly and could do a forty-five minute aerobic routine, three to four times a week. Now if I am lucky I can exercise at a moderate pace for ten to fifteen minutes. One area where I have observed improvement has been in the gradual return of my cognitive abilities particularly short-term memory skills.
Last Fall when I agreed to be interviewed for NEA Today and Schoolhouse News my motivation was to warn others of the dangers of poor indoor air quality before it is too late. I have learned my case is not an isolated one as teachers throughout the U.S. have told me about mold contamination in their schools and the physical symptoms they have endured which are sadly reminiscent of mine. Their stories have strengthened my resolve to campaign for legally enforceable air quality standards. I believe if such policies had been in place the McKinley School disaster might have been averted. The extensive and extremely hazardous mold contamination at McKinley would not have been allowed to fester for years. The “deferred maintenance” that contributed to the building’s deterioration would not have been so readily tolerated had regular air quality testing been implemented.
Those of us with pre-existing conditions such as allergies and asthma who are most vulnerable to the effects of toxic air quality would have been more cognizant of the risks we were undertaking by simply coming to work at a sick building. I only wish I had been armed with the knowledge I have acquired since McKinley was shut down, before I was assigned there in 1991 and especially after my trip to the emergency room in 1998.
Many of the health and career decisions I made in 1998 would have been dramatically different had I comprehended the connection between my illness and work environment. First of all, I would never have exposed myself to such air quality again by re-entering the building. Secondly, I would have immediately filed for a workman’s compensation claim. Finally, I would have sought the advice of a physician with a background in mold related illnesses. In that way, I might have avoided the waste of time, energy and expense of meeting with fourteen medical practitioners who ordered testing and the use of medicines which for the most part actually aggravated my condition.
Believe me, I do not relish exposing parts of my medical history in a public forum such as this. I realize doing so will not repair my health, fix my financial woes or bring back the daily contact with my students that made my job such a deeply satisfying one. However, if in some way my testimony helps to protect the basic civil right of teachers and students to work in a safe and healthy environment, then this will have been worth it. Thank you for you kind attention.