They have switched the cleaning schedule for our building lobby to the early evening hours. Those are the hours during which I retrieve mail and packages or exit the main entrance to take an evening walk. I had a rather severe reaction last night to the cleaning chemicals. I am better this morning. I did a full retraining, but the flood of memories of more perilous times came roaring back. I felt the helplessness, the hopelessness all over again.
It seems I always want to change people. I am reminded of an episode in an office where I once worked. It was a small office in a converted Victorian house. There were ants all over the front stoop. (Which by the way was seldom used). I had what I thought was a very respectful and informative meeting with the office manager. I was armed with pamphlets about the uses of harmful insecticides and their effects on even the non-reactive humans. I thought she was listening rather attentively. At the end of the meeting her only comment was “I just need to kill the ants”. And the pest control people were dispatched that very afternoon.
I don’t know that you can change people’s minds. When you are in recovery from anything, really, there is a feeling of constantly having to let go. When can I just be heard? Isn’t anybody listening?
I am still here. This is not a simple statement. I will celebrate two years in October of working the Gupta Program. Sometimes I start to notice smells and I get discouraged thinking that I have not made much progress. Nothing could be farther from the truth. I was reading a success story which Ashok circulated the other day. I was reminded of all the things I did for almost twenty years to accommodate my MCS. I have to remind myself how far I have come. Smells are really just irritations. I still do the seven step process and the irritation disappears.
Two years ago I was actually considering lining my living space with foil. I was spending most of my time in my car. I was using public facilities according to the safety of their bathrooms.
I went shopping today. I walked into a department store right through the perfume section. I thought about the perfume, but I knew that it would not hurt me. Yes, it was strong, I still don’t care for perfume. But the big difference is that I knew that it would not hurt me. The amygdala cycle did not kick into high gear and start running like a hamster wheel.
Yes, I am oh so grateful.
Well, I just finished a three night stay in a hotel and attended a three day conference with over 700 people. I think that only a chemically sensitive person could understand the immense significance of this.
I did well. It was challenging at times, but I paced myself. Pacing is a big part of the Gupta program. I also had to put things in perspective and realize the magnitude of what I was actually doing – staying in a hotel ! The important thing is to not make connections between the perfumes and air fresheners and how you are feeling. In the Gupta program you learn how to break that connection by identifying your negative thoughts and learning to stop the cycle which those thoughts create. The program is all about breaking the cycle of reaction by breaking the cycle of negative thoughts. Ashok (Gupta) often tells people to talk about their recovery in terms of breaking an adrenaline cycle. After I worked the program for a while, I could actually feel a different sensation in my brain when I would stop the cycle. I am a highly sensitive person, as are many of us with these types of conditions. (Just a reminder that this is a brain malfunction and not a psychological issue). Being able to feel the changes in my brain may not be a universal experience of recovery, but it has been for me.
So today is the first day home after the trip. There are many things that are different. I do not feel the need to wash everything that I had in the hotel room. I can still smell the hotel when I walk into my apartment and it kind of smells good, like a hotel. I can, however, choose to not like a particular smell, but that seems normal to me. Perhaps I will write in the future about the role of normalization in the recovery process.
I was talking with my attorney today about being exposed to the new paint and carpet. He said we need to plan ahead to protect my health. Don’t wait until they have to carry you out on a stretcher with cardiac arrest. I have tried to educate him about MCS and the symptoms. He is a good man and a good attorney. He helped me out of a very tight spot in 2013. I plan to write about that experience in detail at some point. For now let me just say that my illness was criminalized. There will be more on that later. What I learned today, though, from my conversation is how hard it is to actually explain the symptoms of MCS. It is not like a heart attack and very few of us would call 911 when we have an exposure. At least I know I wouldn’t. I think people are used to certain conditions having a certain set of symptoms and MCS just does not fit well into that model of illness. It is such a strange and multi-symptom condition. How can people relate to brain fog? How do people react if you tell them that their cologne or perfume makes your brain feel like two metal knitting needles are being jammed into your forehead and through the back of your head and that your brain now feels “jerky?” It is a dilemma.
Most of the time there seems to be zero accommodation for people with chemical sensitivities. I needed to travel to a nearby city a few years ago. I was going to have to spend the night. I called ahead to the hotel and spoke with someone in the marketing department. I requested that a room be cleaned with vinegar and water only and that no air freshener be used. I explained my particular concern with any type of fragrance or air freshener. Upon my arrival I was bombarded by air freshener in the lobby. I mentioned it to the front desk clerk and she pointed to a nozzle in the ceiling above her workstation. She said that when it goes off it burns her skin. It was the hotel’s fragrance delivery system. I went to inspect the room that had been prepared for me. The hallways were also full of air freshener. No doubt their fragrance delivery system also serviced the hallways. The room was fine, but I was so sick by that time it would have been impossible for me to stay. I confronted the marketing person with whom I had made the arrangements. I never got an answer as to why she didn’t tell me about their fragrance delivery system. I wonder sometimes whether or not the staff of the hotels even know that these systems exist. The front desk clerk knew because of her comment about it burning her skin.
On a positive note, however, I did have a positive experience at a seminar I attended at a retreat center. The retreat center itself was not as informed as they could have been, but the people running the seminar were very accommodating. When I arrived there were air fresheners in the bathrooms. They had already asked that people not wear fragrance and I appreciated that. I mentioned that the air fresheners made it impossible for me to use the bathrooms. They immediately contacted the maintenance staff at the retreat center and had the air fresheners removed from both bathrooms. I was a little stunned at this level of accommodation. It is sad to report, however, that this is one of the only times that I have encountered, what I will call, such radical accommodation.
I really think that people simply cannot understand the challenges of the chemically injured unless you have been chemically injured or live with someone who has been chemically injured.