MCS Improvements Part 6: Tracking Over 3 Months (3 dentist appts)

I had a neat opportunity to track improvements recently.

In 3 months, I went to the dentist 3 times - with each visit almost exactly one month apart.

The dentist is a number of hours away and each trip in total took over 8 hours at the shortest.

on the last 2 visits, I also went out for lunch at the same restaurant after the dentist.


I found it much easier to assess the level and rate of improvement with those visits compared to somewhere I go once or twice a week around town.

Exposures:

same hours long drive there

in same newer, smelly vehicle

inhaling the same exhaust fumes

walking through the same parking garage,

air freshenered elevator,

cleaning producted bathroom,

chemical-filled dentist office,

scented serving person, carpeted restaurant

eating the same delicious but non-organic food

same hours long drive home

in same newer, smelly vehicle

inhaling the same exhaust fumes

Reactions:

with each trip my reactions were WAY less than the one before, my recovery time was faster (with trip 3 recovery time being none at all really because I pretty much didn't react all day!)

I should put that in it's own sentence.

I am improving fast enough that although Trip 1 felt like hell and Trip 2 still felt like an ordeal (though not a hellish one), Trip 3 produced pretty much NO negative reactions and therefore didn't require any recovery time.

 I was slightly tired a bit after eating which happens to me anyway when I digest a large meal.  I still disliked the various things I smelled but did not physically or cognitively react to them.

I also hade slightly sore shoulders which came up about 2 hours after getting home.

After finally washing perfume and etc fumes out of my hair that went away.

If someone had told me 3 years ago that this would ever be possible for me, I would not have believed them.

In Other Improvement News:

In other news, going out to stores, malls, etc with no mask is now the norm for me.  I carry a mask in case I need to use a washroom that is ridiculously air freshenered but rarely use it.
The reactions from those 'out in public' places are lessening steadily and recovery time is almost instant after getting home.
It used to be that recovery time couldn't even start until I had showered and changed into clean clothing but now it begins the second I am in cleaner air.

Interview: Julie Laffin - Performance Artist with MCS

I am very happy to bring you this interview with Julie Laffin, an extraordinary performance artist (who also happens to have MCS).  I first heard of Julie's work on the old Planet Thrive site a number of years ago and was captivated.  I think you will enjoy viewing photos of various pieces on her website at www.JulieLaffin.com

My questions are in blue and Julie's answers are in dark red.


Thank you Julie for participating in this interview.  How did you first become involved in performance art?

I was very interested in various artistic mediums and could not seem to settle into one of them exclusively.  Having a strong interest in both performing and visual arts, I began to merge film, theater, sculpture and photography while in college.  Instead of using actors or models in my work, I often used myself as a subject.  When I read a book about 1970s feminist performance art called the "Amazing Decade" a light bulb went off in my head.  At that moment I began defining myself as a performance artist. That was in 1984.

What are some of your favourite things about performance art?

The contact with a live audience and the fact that the work is born in front of the viewer has been a driving force in my artmaking.  The associated inherent risks in that dynamic has always been both terrifying and rewarding.  Because performance art is a flexible ever-expanding form it lends itself well to innovation and is very much open to be redefined at any moment.  It could be argued that performance art can be traced back to prehistoric cultures in the form of tribal ritual, music and dance but I think the modern incarnation of it still feels new and is in fact rapidly evolving as new technologies enter the picture.  I see our ancestors blowing paint through reeds onto the walls of the caves at Lascaux as representing a lineage that still exists today and is somehow connected to technologically sophisticated image projections.  I find that very exciting.

Have you found your art healing or balancing in any ways?

Yes, being immersed in projects allows me to have psychological space and to let go of being excessively focused on my illness.  My work gives my life direction and meaning.  It gives me the joy and satisfaction that comes with doing my authentic life's work.

Is there anything that you learned in your artistic career that has translated into a useful skill for dealing with life with a chronic health condition?

Because making art demands a lot of focus and solitude, I realized when I got sick that I already have a high tolerance for isolation that I don't think most people have.  It has helped me with the extreme isolation that comes with being severely environmentally ill.  Not to confuse matters but I was a very social person and had many social relationships with friends and colleagues.  However, when push came to shove I was able to embrace solitude when I was forced to.



Do you have any suggestions or words of encouragement for other artists who have MCS?

It's extremely important to only work in ways that do not further jeopardize health.  That said, an important thing for me has been to allow other people to help me and to be willing to reinvent myself.  My early work was extremely materials intensive and always involved a live audience.  I worked with huge amounts of fabrics, dyes, and at times metals and paints but these are no longer options for me and I would not want to subject others to working with them either at this point.  Since childhood, I was a very passionate sewist which has been the hardest thing to give up.  In addition to making gigantic gowns for performances, I made some of my own clothing.  Aside from being too traumatized to make any art for a few years when I first got sick, giving up sewing garments, ordinary or extraordinary, has been my biggest creative loss.  But I force myself to focus on what I can do and right now I can use video, photography and virtual media and at this moment it feels like more of an opening, an invitation to try new things rather than a limitation.

Has having MCS brought any gifts or expansions to you artistically?

Yes.  Before I became ill my performances were mostly solo.  Now they are almost exclusively collaborative.  I am extremely grateful to have amazing people to work with, particularly Clover Morell, Stephen Bottoms and Claire Geall Sutton who have all found ways to accommodate my illness in order to preserve and expand our artistic and personal relationships.  Because of them I have been able to produce performance work.  Also, when I was in Snowflake last year I had MCS friends there helping me make photos: Julie Genser, Melinda and Marsha Honn.  I created a small body of photographic work with a performative base that would not have been possible without their assistance.  Not being able to do live work in front of an audience has forced me to reconsider technology and my recent performances have been accomplished through the use of live feed video.  This is a conceptual shift for me that seems significant and full of potential for future work.  I'm taking a performance workshop in Chicago right now via skype because, gratefully, the other participants are willing to make it work.

Also, Clover Morell and I have rehearsal/studio time when we collaborate via skype with the intention of developing future work.  I was recently skyped into an art theory class at the School of the Art Institute to talk about performance art and how I am using new technologies in a simple way to give myself presence.  Another artist gave the talk and I was there to be part of the dialogue and provide an actual example of someone producing work using this strategy.  I feel very grateful that my EMF sensitivity is not severe enough to limit my ability to use computer technology.  I know others do not have this option and my heart goes out to them. The internet and video conferencing have in some ways given me my life back.

Is there any particular performance that you dream of doing one day?

Yes, but I'm keeping it a secret.  It's been a dream since I conceived the piece in 1994 and I'm fearful of talking it out of existence.  It's probably superstitious on my part but it's happened before.  I will let you know if and when it happens, but I will say, it is very low tech and involves nature and no technology.

Do you have any stories to share of people being unexpectedly supportive or kind to you (as a person or as an artist) since you acquired MCS?

Yes, it has happened many times.
One poignant example for me was when my friend Steve Bottoms visited me in Snowflake.  He lives in Leeds (England) but came to Chicago to do a lecture and made a special trip to Arizona to see me in July of 2008.  Even though he had gone through an elaborate accommodation ritual with personal care products before he arrived I was still not able to tolerate the residual fragrance on his hair and skin.  Over the course of our three day visit in rural Arizona, he took many steps on my behalf: leaving his car a half a block from my little rental house, removing his usual shoes and clothes and donning a towel, sealing up his wallet and keys in plastic bag, wearing his contact lenses instead of plastic framed glasses, taking several baths including bathing in baking soda, wearing my husband's clothes, and eventually shaving his beard and head because after all these steps I was still reacting to a trace of fragrance in his hair.
Being artists, we captured most of this process on video and are making a performance about it.

Also, because of the willingness of Clover Morell and Claire Geall Sutton and staff to accomodate my illness, I have been able to continue my curatorial role in Site Unseen, an annual art exhibition at the Chicago Cultural Center.  This has been my lifeline and their kindnesses are too numerous to itemize.  Also, my husband has changed his whole life to help me.



Those are wonderful stories Julie!  Thank you. I look forward to the performance you and Steve are making about that experience!


Is there anything else you would like to share?

I still plan on getting well and am excited about how regaining my health will inform my work when it happens.  It gives me hope and a future to look forward to.




Thank you so much Julie for agreeing to be interviewed!  I really appreciate what you have shared and am very inspired by the way you have adapted your approach to allow you to continue your passion after the onset of Environmental Illness/MCS.

If you'd like to read more, there is an excellent, in-depth article done in 2003 here and you can visit Julie's website to view photos of various performances.  :-)