MCS: Saving Our Lives Battling For Life

[Guest guest]

A personal story by Walter

Following is an update of my story I posted August of 2001. It will

be published this summer in " Ecologic News, " a publication of 'Heal of

Southern Arizona,' as well as submitted to various other MCS

publications:

I am 52 years old and have battled Multiple Chemical

Sensitivities (MCS) for sixteen years. It began with a strep throat

infection that ultimately led to having my tonsils out at age 36. In

retrospect, I believe my initial overdose exposure was related to mold

that I'd been unknowingly breathing for a year in the Birmingham,

Alabama basement apartment where I was living. When I moved from that

apartment and removed clothing from the bedroom closet, I discovered

the walls caked with mold. I also grew up around the farmlands of the

Yakima Valley in Washington State, an area that is heavy with

pesticides.

My MCS symptoms vary. They include chronic fatigue, fibromyalgia,

depression, and also problems with the digestive track. Exposure to

fragrances is the worst, but other fumes, solvents and chemicals also

make me react. When exposed, I immediately experience an increase in

the chronic pain on my right side and right chest.

I have been through years of medical testing, with doctors minimizing

symptoms and refusing to listen. I sought help from anyone who was

willing to lend an ear. I have tried every possible cure:

antibiotics,

colonics, fasting, juice fasting, exercise regimes, meditation,

psychotherapy, group therapy, support groups, family therapy,

chiropractic, chi gong, acupuncture, anti-yeast diets, fit-for-life

diets, protein diets, macrobiotic diets, Huggins diagnostics, removal

of

mercury amalgam fillings, and extraction of root canal teeth. I've

also

tried supplements, organic foods, purified water, medical specialists,

naturopaths, dentists, and doctors of oriental medicine. I still

suffer

from MCS. The only way I can get any real physical relief is by

avoidance, which is almost impossible if you have to make a living.

In 1999 at the age of 48 and twelve years into my struggle with MCS,

I

was diagnosed with stage III colon cancer. The tumor was so advanced

that the cancer had spread into my lymph system. This was after years

of consulting gastroenterologists who had never bothered to do a

colonoscopy; they were satisfied to prescribe anti-anxiety and

anti-depressant medications for Irritable Bowel Syndrome. After

cancer

surgery, chemotherapy, and three years in remission, I am not only

fighting for relief of MCS symptoms, I am literally fighting for my

life. I need to avoid ongoing exposure to toxins in order to support

an

immune system that will keep my body cancer-free.

For most of the sixteen-year battle with MCS, I've been a marriage

and

family therapist in private practice. After chemotherapy I became so

ill that I had to stop working. During the year 2000 I lived in the

Cascade

Mountains near Mt. Rainier, resting and trying to regain my health. I

applied for Social Security Disability Insurance (SSDI), but was

denied

and didn't have the energy to appeal. By the end of 2000, feeling

much

better and nearly broke after a year off work, I started up a private

practice. I found myself once again battling with clients and

colleagues about fragrances.

Early in 2001, the director of a hospice program in Northern

California

offered me a position as bereavement coordinator. Having been given a

written assurance of an odor-free work environment, I was filled with

hope. Feeling a sense of " calling, " I uprooted my life in Washington

and moved to California in March of last year to take this job with

Hospice of Humboldt. To my dismay and shock, I arrived my first day

of

work only to find that nothing had been done to provide me with a safe

work environment. I was bombarded by scents from candles in the

offices

and fragrances worn by the staff. Lysol sprays were used in the rest

rooms across the hall from the office that I shared with other people.

It became apparent that the staff had neither been informed nor

educated

about my MCS prior to my arrival making it incumbent upon me to inform

them and make arrangements for my own accommodation. Moreover, I was

told emphatically by administrators, who had apparently intimidated

the

director, that staff members had the right to use their fragrances.

In

my shock I went into denial, believing that I could overcome these

obstacles and make it work; that I was not so sensitive anymore after

living a year in the mountain air. Surely this staff of Hospice

workers

would come to understand my dilemma and accommodate me. However,

within

two months my health began to decline and I began to fear there was no

saving grace; that I was encompassed by a work environment in which it

was becoming impossible to survive.

By the middle of July, three and a half months into my new job, I had

to take medical leave, driven out by co-workers who refused to give up

their fragrances. My health declined to a point near that of post

chemotherapy, back to digestive track problems, chronic fatigue,

chronic

pain, and depression.

Now I am climbing out of the hole once again, but this time aware

more

than ever that I am fighting for my life. I'm no longer in denial.

For

the first time I'm beginning to stand up for myself, and in the

process,

fighting for everyone who suffers from MCS. I began learning about

accommodation rights under the Americans with Disabilities Act (ADA),

found an employment law attorney and, as a person disabled by MCS, I

filed a claim last August with the United States Equal Employment

Opportunities Commission (EEOC) against Hospice of Humboldt. At the

same time I began re-applying for SSDI with the solid support of an

M.D.

and also filed a Worker's Compensation claim.

These processes were extremely difficult for me as I became so

hypersensitive to everything. The poor air quality of the Northern

California coast where I was living was more toxic than I could ever

have imagined and eventually, in November, I returned to the clean air

of the Cascade Mountains of Washington State where I continue now to

live attempting to regain my health.

Having little hope in the Worker's Comp claim and unable to find a

supportive attorney in that arena, I gave it up and kept my focus on

Social Security and the ADA claim.

My M.D. in California, along with an M.D. Environmental Illness

specialist in the Seattle area and my M.D. in Washington all began to

network on my behalf regarding SSDI. In March of this year I received

my award letter from the Social Security Administration deeming me

permanently disabled and giving me a review date in five to seven

years

which is indicative of cases they perceive as unlikely rehabilitative.

The relief I have felt about this, no longer having to fight the

Social

Security battle, has allowed me now to focus primarily on my healing

as

well as my ADA claim against Hospice.

Extensive and exhaustive attempts have been made to settle this

matter

with Hospice before resorting to litigation yet Hospice repeatedly

rejected these efforts, refusing to participate in good faith

settlement

discussions, expecting that I would not have the stamina to actually

sue

them. This resistance catapulted both myself and my attorney into

renewed resolve to see this case through, my attorney now willing to

litigate on a contingency basis.

Just recently the EEOC provided my attorney with a " right to sue "

letter and I am now going forward with a lawsuit against hospice.

This

lawsuit claims " disability discrimination " by Hospice under both the

ADA

and the California Fair Employment and Housing Act, as well as " breach

of contract, " " negligent misrepresentation, " and " fraud. "

If I win this lawsuit, it could have a far-reaching impact on the MCS

community. No doubt the disability discrimination aspect of the case

will be the most difficult; however the other facets of breach,

negligence, and fraud are grounded on numerous documents of

communication between myself and Hospice over a period of months prior

to my ever agreeing to accept the position.

Last year I shared much of this story online with many in the MCS

community. With gratitude, I received considerable emotional support

as

well as helpful networking suggestions. This story is being written

to

let people know I am still out here and I continue to remain open and

receptive to input based on your experiences dealing with anything in

my

story. Please feel free to forward, copy, distribute, and/or print

this

story in other publications.

I am also contemplating writing to key figures in the mass media in

hopes of getting some of them to listen to and expose our plights. I

recently wrote to Bill Moyers of PBS who has done some amazing stories

on end of life care, the environment, and the chemical industry. I'm

asking him now to take a look at the real people -- the " canaries in

the

mines " -- who are struggling with an illness that has far reaching

impact on the rest of the human race.

While my attorney is representing me on a contingency basis, I am

still

responsible for " costs " which could run into several thousands of

dollars. I cannot do this without help and am humbly seeking support

from the MCS community, my family and friends for donations large or

small. If I win this lawsuit, all donations will be returned, so be

sure to include your name, address, and phone number indicating that

your donation is on behalf of " J. Walter v. Hospice of Humboldt,

et

al, U.S. District Court for Northern California, Case No. C 02 2413

JCS. " Funds can be made out to:

" Sher Attorney Trust Account "

and mailed to:

Sher, Attorney at Law

215 W. Standley St., Ste. 11

Ukiah, CA 95482

Telephone: (707) 463-1196

Fax: (707) 462-6258

Email: ssher@...

Walter can be contacted at:

560 Jefferson Rd.

Naches WA 98937.

Telephone: (509) 658-2116

Email: ponder.river@...