Managing Set-backs

This blog began with a very real shift:  Plan BE made it possible for me to believe it was time to begin feeling better.  Earth Day was my point of reckoning ... from here I launched new beginnings.  I told myself new stories and re-entered my community believing I could be part of it.  I filled this new blog with examples of the new stories and success to Plan BE.  I have felt better and better for three months.

Last week-end I tried to do more than I could manage without tipping the new beliefs into territory filled with old triggers of over-load.  Freeing up myself from years of old experiences is still a process, successes build new foundations in increments, but there are no teams of elves laying in the corner-stones and fill overnight.  Walking into a department store, and staying in there (with my mask) for thirty minutes is a legion feat; riding through banks of Scotch Broom lined highways where newly sprayed Round-up edges are evidenced with the inimitable dead-brown tint; and then visiting friends in their new and wonderful for them kitchen set off the set-back.  Topping it all off, my long-additive choice to comfort myself with wheat (bread/toast/cookies) finally laid me back.

Recovery and healing from the effects of multiple chemical sensitivities is a multiple and unique journey.  My experience with the process re-introduces the methods of coping emotionally and physically with symptoms:  first, do I recognize the triggers; then, how do I respond(or react, each verb is different); do I give myself the compassionate gift of 'time' to accept what is happening.  I'm hear to put the process down so I remember that this set-back was not gracefully accepted.  I resist, and want this to be over so I can get back to the better-and-better feeling life I was having.

"There's no rushing the river."  Life if it is a river will flow or trickle with seasons.  All around us the forest has grown from hibernation to shoulder-high Bracken and boisterous berry bushes filled with bell-shaped blossoms and airports of bees.  I want to feel better now, but it will need to be in increments, sequentially-accessed by going through re-entry.  Count the blessings, and the goodness and use it as mortar in the foundation re-laid so far:  two days without wheat makes a difference (I go through with-drawal like an alcoholic freshly sober); Round-up doesn't clear quickly (I know that) I am weak and my nervous system quivers from head to toe; avoidance is still a necessary coping and healing strategy.

We were at MK's celebration yesterday.  Her beautiful photography was receiving the praise and attention it deserved.  Masked and present outside the home-office where the party gathered I sipped a glass of raspberry seltzer and felt part of the celebration.  How long had it been since I'd help a real glass of anything at a party?  Long enough ago that I don't remember. Two of the guests stopped to ask about the mask.  Both of them aware of chemical sensitivities they shared of other experiences with someone they know who lives with the condition.  "Until you know someone, you just think ...'ah, come on!!" one of the guests said.  A big old diesel truck drove past, but not until it had stopped at the STOP sign while I stood on the porch outside the front door chatting with a friend.  It was just minutes too long, that truck, that chat in the same place. 

Managing set-backs is a sequential access experience.  We have often described our life living in tiny spaces with multiple sensitivities using that description.  Seems it remains so still.

Are you easy with set-backs?

Standing in Line

This is amazing!

How is being in a line amazing?  Measurement is funny and we all do it.  "In this country, you always talk about things in the past based on a year.  We (in England) say "I was x-years old when ..."  Measurement by the moon or by the spoonful we all do it.  There's a spot just yards from my writing tray, a nice renewed for me TV tray that holds a renewed for us laptop.  That spot outside, just yards from this Quonset is being dug up and blocked up for a new tiny space soon to be a bath house.  Separate and small, a shower stall that might in time and opportunity morph into a Japanese style soaking tub will bring us from a pan of wash water to a shower of running, hot water.  Measurements we all do it.  I'm thinking "That will be amazing."

So, back to why is being in a line amazing.  Earlier this week I was in town, standing in a line.  I put my feet in my boots in a line with a bunch of other people aiming at ordering and purchasing something to eat.  While standing, in a public space, with people I saw someone I know.

"Hi,' I said when I saw he was done talking with the woman with things in her hands.
"Oh, hi."  We don't know each other very well, but in this small town when you know someone you become congenial ... friendly.  The man asked how things were going 'out there' familiar as he is with where and somewhat how we live. 
"Great!"  There was time enough to move the conversation into bits of detail while in line.  By the time it was my turn to order I saw that the only goodie I'd like was gone.  Something registered in me, while I experienced what I later described as a wrinkle ... Madeline L'Engle is right about the way time can do that. 

I turned to my neighbor and said, "You go ahead, that raspberry-almond scone is not there."  To my surprise he said, "Well, how about that over on the end, that looks yummy."  "Cinnamon roll.  Hmmm....  no I don't think so." 
"I'd be happy to buy you something." 
"No, thank-you."  Time measured forward.  It was but a few seconds.  I sensed something special had happened there.  I touched the friendly man on the elbow and said, "Nice seeing you," or something like it.  I walked out the door and the feeling somewhere between sadness and awesome tried to describe itself to me.

Later that day I wrote an email to my neighbor thanking him for the genuine kindness of his offer.  I described as best I could the wrinkle that happened when I turned down his offer, and said in some future time, we will be in a line and when he makes that offer again I will say, "Thank you, I'd love one of those raspberry-almond scones."  Being in a line, amazing.

Mokihana C.

Author's Note:  This post originated as a piece of writing done on the on-line creative writing group I conjured up during the months, not long ago, when I was lonely for the rooms and gatherings that were once common-place for me.  I am a writer.  I have loved the company of others, and loved being in the company of other writers.  Life changed, I needed a PLAN BE, but didn't know to call it that. 

I wrote this this weekend, and am thrilled with the fun of being able to spread a story through the many voices of blogging:  I'm absolutely sold on this write-and-publish venue.

more GOOD NEWS ... never under-estimate the power of a letter

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