Living With MCS:
I live in my own house, which has undergone many adaptations for me to live free of crippling exposures. Iíve lived mostly indoor since June of 2004 when I last worked. The first year I was ill, I lived with my partner of a decade, John. Those first few months right after I was poisoned I lived in one 8 by 10 room and John saw to my needs since I rarely could leave the space. My own 15-year-old daughter lived with others. The only item in the room was an iron bed frame and a special mattress not treated with fire retardants. Since that time I have been able to add a glass table, a chair and after a year a laptop with offgassing metal enclosure and a small tv on a metal stand.
John built aluminum barriers which shielded my living space from exposures from the rest of the house. Slowly other areas of the house became possible for me to inhabit.
In October 2005 John moved to an apartment across the road. There he was able to relax somewhere without constant showering and the controlling of exposures which make me ill. We are still a couple, but this illness has greatly affected our closeness. This is one of many losses this condition has created.
My daughter wanted to move back. She has made huge efforts to be toxin free. When she comes home she bags her daytime clothing that has accumulated fragrances and chemicals that damage me. She walks between the barricades to shower and dons new clothing washed in non-chemical based cleaners. Once cleaned, she can join me in the rest of the house. Her old clothing is then sometimes hung on the many lines outside to blow off their fragrances, before she does laundry.
Some days she might shower and change as many as three times to come and go for various events. Sometimes she continues to stay with friends when she knows her activities would knowingly hurt me and she is simply too tired or not interested in doing the strip and shower routine.
Only one of her friends were willing to shower and put on her clothing. This one friend of my daughters continues the use of unfragrant shampoos at her home also. Even if others shower here once that one day, this is not enough to keep them from affecting me as one shower does not clear weeks of fragrances away.
For Chemical Sensitivities the top RX is avoidance, and most often this means people.
There is deep isolation and depression that typifies the life of someone who has suffered neurotoxin poisoning resulting in multiple chemical sensitivities. I have lost my career, my income, my health, and social contact, including my own family. Most of what makes life purposeful have been drastically reduced or eliminated.
Effect on Family
This new condition not only shrunk my world, but also has changed my childrenís lives. For years my home was the hub of the neighborhood teens. Iíve taught here since 1983 and had three active children of my own. Now my college age kids barely visit, for its too ďdifficult to visit momĒ. If they did we simply go on a walk together, with distance between us, then they leave for friendsí homes.
Homebound, I was unable to see my older two off to college, one returning for his second year, and one heading to NYC for her first college year. My youngest had to move out so as not to complicate my recovery. This enforced distance from contact with my own children has been heart-breaking.
It was most upsetting that my youngest had to move out. She stayed with alternating friends in town, or with her father a half hour away. The strict air quality needs I have, impede her ability to have friends over and function as a normal teenager; not to mention she attends the high school which contains the toxins which made me ill, and she would bring those and other chemical soups home on her hair and clothing. These are the triggers that cause me great distress, and therefore I stay home. Over and over I chose solitude over company to avoid pain and practicing avoidance.
My son went to a rural college and I have driven to see him a few times visiting mostly outside having picnics. His dorm is extremely difficult to be in, as are most of the buildings of the campus. He decided to visit here recently. I mailed him my safe shampoos and laundry detergents. He used them for several weeks to rid his person and clothing of triggers. When he arrived however, he had old spice deodorant and the dipropylene glycol and other chemicals of fragrance laid me low in a mere 30 seconds. I couldnít hug him or be in a room with him. I began crying and he left.
His father called to asked once if I could pick him up at the airport after visitng him in Colorado, and then drive him back to college. A simple request like this is problematic trying to make sure he is absolutely fragrance free after being in a plane. He needed to put on prewashed items I had in a tight bag and glycerin to wash in the airport bathrooms directly before he got in my car.
My oldest girl has been attending Columbia University in NYC. She is extremely active at University directing musicals and working interesting lectures. I have been cut off from her life since Iíve been ill. I saw her for a handful of hours in the first two years of my illness. Residues in dorm laundramats coat my kid's clothing with chemicals even if I supply them with safe laundry products. The first Christmas my children came home, it was only for a few hours before I became ill from their exposures so they left for friendís homes. Their personal products were too hard to process. Since then I have left them my items, but they do not always use them. Now I keep clothing their size for them to change into that is not treated with chemical or petroleum products, and that I have washed.
My youngest was in 10th grade when my illness began. She has had the hardest adjustments to make. In trying to live with me again she must make sacrifices and take extra precautions not to make me suffer from exposures. She has greatly curbed her contact to friends, having to choose at times between them or me. Friends come in through the basement door and wait for my daughter to come down to see them. They cannot be upstairs unless they use my products and change their clothing.
With my older two children I toured roughly 15 colleges. Iím losing out on being active now in this process. My third child is truly getting the worst of my illness. I was called by Syracuse recently saying they could not accommodate my needs for touring during the open house, so even if we do go, she will not be at the regular event seeing others her own age go through the process. We are working on other parentsí trips, or visiting former friends at their colleges.
My youngest has truly had her teen life altered dramatically. Despite not living home for over a year she was able to keep on the high honor list and maintain emotional stability. Iím very proud of her, and feel horribly about these changes, though she never complains.
All that I can still do is to see my daughter play soccer, for thatís outside. I keep far from the playersí and the crowds clothing and personal products. I stand very far back and/ or keep moving depending on the wind direction which blows the dryer sheet and fabric softener chemicals in my direction and cause me breathing pains. Itís the only time Iím able to see my daughter in a school event so I try no matter what. Since I cannot control any conditions indoors, I miss her violin performances, her theatre activity, her hosting the area talent show and was not able to attend parent teacher conference nights at school.