We asked this question in 2011, after we'd begun rooting our life on a Salish Sea Island, "What if the world we know became Fragrance Free in 2023?" One step, one person, one place at a time we made a change ... and then another.
Earlier in the week, my friend Eileen joined her choir for a gathering of song for Memorial Day. I heard about the event through my husband Pete. Eileen and MK share their land with us, and during the year we have been here she has become an understanding advocate for those who live with Multiple Chemical Sensitivities. The process of becoming aware of this condition-illness does not easily move to acceptance for those living with or observing the condition-illness. Time and willingness are two factors that must couple, and even that combination will be affected by circumstance. The third-part of the process of change: action can be a long time coming. We know from experience the journey through awareness, acceptance and action. The years of healing from MCS has brought us to today, and this is the good news.
The following (edited to exclude a full-name) email was sent to the members in Eileen's choir just the other day.
"I want to say something about Multiple Chemical Sensitivity (MCS). I knew little about it until Pete and Mokihana moved onto our land. (You all know Pete. He brought the risers to UU for us and took them back. Now he's repairing them so we can use them again with safety.) At first I was skeptical about MCS. It was difficult to make sense out of Mokihana's responses to the threat of chemical contact. It seemed inconsistent.
Scents and fragrances are indicators of chemicals in the air. Individual responses can include itching, respiratory response, hives, feeling like you have the flu, fatigue, and a host of other problems that can last for days. The way I was able to make sense of Moki's responses to chemicals is that it is about being safe. To learn more about Multiple Chemical Sensitivities check out Mokihana's blog Fragrance Free in 23. Mokihana was able to attend our Spring concert by standing at the back door of the church. She was so happy to be able to hear us.
If you are willing, I invite you to consider creating our choir as a safe space for folks with chemical sensitivities. A number of folks in the choir besides R react to fragrances. Drier sheets, perfume, hair products even essential oils can trigger reactions in those with chemical sensitivites. Personally, I'm not sure that the fragrance that set off R's reaction was on one of us but in the practice room. I caught the fragrance and started coughing when we walked into the room and I was one of the first ones in there and I am fragrance free. One of the things that makes a huge difference to MCS folks is having a community that will stand with them, trust that the illness is real, and give up as many fragrances as possible. If you are not able to give them up. Then it helps if they are told ahead of time when you are wearing a fragrance, or if you detect a fragrance in a room so it doesn't take them by surprise. MCS is unique to each individual and each day is different from every other. Stress and fatigue, the intensity of the fragrance, the environment, the occasion all have an effect upon how the reaction will unfold. Thanks for allowing me to share my experience learning to trust and appreciate my new friend Mokihana and being open to understanding how I can support her and other folks with MCS."
Eileen
Mahalo Eileen for your trust, and your letter(email)
Love,
Mokihana
Wonderful, positive steps are now part of our 'visible' reality ... that "I can see it, they can see it" reality that we humans often mistake for the ONLY reality. The New Moon in Aries, the sign and potent energy new moon of new beginnings and new stories is half-way through its month-long cycle of action Jackson. I've taken to deciding to choose better-feeling thoughts consciously and consistently. Deciding that I could believe the Earth Day Celebration was some thing I COULD do is a wowser example of 'Believe it BEFORE you see it!" We have been on a long journey of swhirling and disconnected reality and more than enough suffering. Other blogs, now at rest, have filled with those stories. They served us by finding out in oh so many ways what we did not want. Today, I am in a different place and appreciation and believing is fueling our good news. Our good news today will gear us for the expanded good we can't yet see.
So ... this post is Plan "Be" Part II ... BELIEVE it BEFORE you see it.
Where is she going with this? (I often wonder myself)
First, to believe it before yah see it. Start with what I do see as BEAUTIFUL, 'AS I DREAMED IT COULD and IS' stuff.
A GOOD dentist appointment HAPPENED. Yeh, anyone can relate to that statement! Who loves dentists? Well, folks with MCS often can't do dentists. I haven't been to a dentist I could afford; in an office that was not impossible to breathe in; with a chair-side manner that spoke "kind and caring" for many years. Yesterday I met, sat in a chair and was engaged with a young dentist and his assistant who spoke that "kind and caring" language. I can afford to pay for some of the treatment I need, with due diligence and wise decisions. THIS IS A VERY MAJOR 'Beautiful' thing. I will need to decide the next steps and dates for work, and I get to have options, I believed it before I met young Kenneth Killpack DDS and his assistant Tom, and front desk woman Angela. Now, it's happening.
MASSAGE. I had my first massage of the year. Another MAJOR 'Beautiful' thing. I met "M" last summer. Over the months Pete and I have gotten to know her more and more. Pete does fix'ems for "M" and in return, there is $ and trades ... like this massage. "M's" home is a mostly-benign alternative to 'usual' structure and her willingness to make adustments to the conditions I need to stay in her presence and her home add to the 'BEAUTIFUL' thing experience. A long, slow and loving chat and massage (while she used my organic coconut oil) added to my "Plan 'BE'" ... I believed I could get a massage. Armed as I was with my own sheet, air-out yoga mat and my mask ... I was able to be massaged and cared for withOUT using any of my arm-full of 'Be Prepared' stuff.
DINNER INVITATION FOR EASTER. This is another big step in my Plan 'Be" Part II. Easter Sunday Dinner is something we haven't celebrated or expected to be 'able' to enjoy for many years. Things are changing. We're been invited. Pete and I talked about it. We accepted. We're going to do some more talking and preparing for the inside-event, and then the next experience in our Plan "Be" will unfold.
BE-4 TIME(this expression is something I haven't heard in my head for a very long time. But, in Hawaii, my grandpa and the elders often talked about 'before time', times they remember and that we young kids couldn't see)
... My Journey here to a place where positive healing experiences happen more often began (and continues) with knowing what I don't want. Here is a short, but potent piece of a letter written by a woman living with MCS. I received it through the grapevine and offer it as a gift of education. A beginning for some, a continuation for others. BELIEVE IT BEFORE you see it! Becoming Fragrance Free in 2023 will mean attending to this kind of education from folks living with the affects of a world that's not FF. 'TAKING 5' Steps in your own dear life will include Noticing things like this kind of request from a friend, or a friend yet to be. Read this and see where it fits into your journey:
B R writes
...which leads me to my final point about this: most folks with MCS are in a constant struggle to navigate our daily lives. if we are able to go out, we face a continuous barrage of life-threatening chemical exposures. because MCS affects not only our bodies but our cognitive abilities and emotions, we often cannot express or identify that we are being made sick by one particular product someone is using. so if we do take the time to let you know that something you’re doing is making us sick, please respect that and don’t make us tell you twice, or g-d forbid, more than twice. it’s incredibly painful for us to find that people who purport to be our friends or allies, who express the desire to be near us, do not take our basic needs seriously and even cause us harm after we have expressed that there is a problem. if you are struggling with a solution, please let us know so we can help you resolve it, or if that’s not possible, so we can stay a safe distance from you until you get it resolved...
Thank you JT and DP and DR for extending the grapevine :)))
