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Living With MCS: The Life I Lost

Symptoms    Family Living    The Life I Lost    Coping    Being Accommodated    Reflections   

I was a performer, teacher, speaker, conference organizer, and librarian. I LOVED my jobs and family life. I miss this all terribly. I was our local middle school librarian and also ran the summer school library for the county. One night weekly I worked the reference desk at the local college and ran introductory reference use classes for students.

I was included in the casts for two summer seasons at the Forestburg playhouse equity theatre.

Though my singing voice came back a year into my recovery, I cannot be in public easily, and could never audition at this point. I use to entertain at Bethel Woods, Red Cross functions, Non profit organizations, Harvest and July 4th celebrations for my town etc., with my partner John.

I was a founding member of the schoolís strategic planning committee and drafted a code of ethics for the Middle School. I am unable to regularly attend the strategic planning meetings. They did hold one last year in an open, tiled large space of the fire department at my request. The company was fragrant however, and the papers and markers were problematic. I sat by the window and wore my respirator a lot, taking breathing breaks outside. This was a group in which I was extremely a key player, now I just read their minutes. I used to help with the school PR. I took most of the photographs on the school website, documenting theatrical, sports and community events. My school involvement has stopped.

Though I ran yearly career days scheduling forty professionals in rotating workshops for the entire middle school population, its difficult to be with just my one daughter now without necessary precautions.

I have had a radio show since 1992 playing folk music. I used to record interviews with national performers. Now I cannot control the conditions I will be met with. Having run clubs in New York City I've been extremely active in the folk music scene for 30 years. For a while other folk national folk djs from around the country covered my radio shift so I wouldnít lose the spot.

When I returned to try my volunteer shift, although they try to accommodate me, I became very ill. It turned out to be someone was storing incense in the Saturday program box and I was reacting to the chemicals.

In an effort to make it possible for me to volunteer again, the radio station implemented a non-chemical policy and allows no one there during my two hours, unless I know him or her to be totally chemical free. This has not been a total success, however, returning to this volunteer two hours every week is important to my mental health. It allows me some creativity and an ability reach out to a public I cannot connect with physically.

Sometimes by the end of the shift however, something is bothering me and my chest is hurting and Iím dizzy despite the attempts at a clean space. This is a one part of my week, however, that I can remain creative and participate in the world, so I hate to give it up and continue to try to make this work. At least I always know I can drive right home to the safety of my home after short trips out.

I used to introduce the formal showcasing artists at the North East Folk Alliance conferences with hundreds in attendance. Now I cannot. The organization flew me to Nashville one year to represent my area and radio station, and collect interviews. The year before that I was invited to the Canadian folk Alliance workshop in Ottawa to speak to emerging artists on how to get radio airplay and what to consider when making a cd. I could never do that now, for I cannot tolerate hotels. I cannot be in conference rooms with my respirator very long without assurance of a safe place to go.

Staying at a hotel is problematic. The last time I drove the eight hours to see Dr. Shoemaker, I camped. Before that I have slept in my car outside the Holiday Inn and only booked a room in order to shower quickly before my appointment. This turned out to be a bad decision as the manger explained they had JUST put in all new vinyl shower curtains. Had I known, I wouldn't have booked the room. Here I am paying him anyway, in 2004, and asking about the possibility of making one chemical-free room for Shoemaker patients.

My family lives throughout the US, overseas, and in Canada. We used to gather for Memorial Day at a spot chosen by my parents every year since 1995. We donít gather as a family now. I missed a wedding last summer in Scotland, and many many significant family events are simply not possible. There is so much accommodating they must do to not hurt me so any gathering is carefully planned and these are limited.


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