you need to meet ayla

by Living With Morgellons

morgellons is a very strange thing.  it is almost a “have to live to understand it” kind of strangeness.  this is why we in  the morgellons community (just like the lyme community) “get” each other.  we have endured the most extreme and bizarre symptoms any illness can dish out and also denied health care. on top of that we have been ridiculed and ostracized. we are the lepors of the 21st century (and just so you know world leprosy day is january 30th and i will also add there are over one thousand lepor colonies in india today..think about that).  if you don’t know what pariah is look it up now because  that is what we are.  morgellons is an affliction that can cause one to go to the bowels of nether hell and fall out the bottom into a whole new and  terrifying but sometimes beautiful land.  this is where i need an artist to say what words will fail to do. this  is where i need to introduce ayla.

ayla is aged  56, an artist and designer. she contracted morgellons in january 2010. she is using her artistic gift to both educate and raise much needed awareness. she has so far completed three paintings in a series dedicated to the morgellons cause. she also has an amazing website called:

 “morgellons disease awareness”  link here: http://morgellonsdiseaseawareness.com/

 

at her site you will be able to read about her journey and also see  her  series of morgellons awareness oil paintings.  there is   some good information there.  i really like her physicians reference page. it is written well and has some good micrography.   her site helps to inform the new or old morgellons sufferer. her paintings also translate for me the statement “go to the bowels of nether hell, fall out the bottom and land in a new and terrifying but sometimes beautiful land”. this 3rd  of her series does it well:

Image

 

when i look at her rendition of  edvard munchs “the scream”..well..i couldn’t have said it better. there we see a lesion covered figure at the edge, terrified and alone and screaming for help..in the background others happily stroll along the pier taking no notice.  i hope someone even one person that does NOT have morgellons  might read this post and find it in their hearts to give to the morgellons community what most will not give. that is compassion. that is empathy.  that is what the morgellons community is screaming for.  a doctor would be nice too.

   i like communicating with the morgellons community.  in the begining i did it out of a desperate need to become informed and to find out how to get health care. now i do it to both to be part of a community but also to give back. i feel lucky to be alive and i attribute much of my success in recovering my health to fellow sufferers that have not only had to fight for their health but at the same gave of themselves… and for what?  i will tell you what!    they saw “unmet needs”.    they saw themselves and others being denied basic health care and that needs to change.

     this whole subject of “unmet needs” reaches far outside the morgellons community. it is the plight of the planet.

   now i am going to add part of my communication with ayla.  i will let the message explain itself. 

 

 hi ayla, i love communicating with you because i sort of feel like we have similarities in the way we are experiencing morgellons. i am not specifically talking about symptoms more about the questions our illness has raised and then the inevitable search for answers.   morgellons is a massive illness not just in how sick it makes you but in the way we have to educate ourselves on too many topics.  this is not always a good thing when we are sick. i am starting to notice a common denominator in the ones that have recovered their health…or the ones that are  having a easier time in their journey..they, like yourself, reach out. they try and help others.  it seems to be an integral part of the healing journey.  there is a lot i wanted to express in this message but i’m not doing a very good job. i wanted to express something more  along the lines of how we (you) seem to ask yourself questions.. also how you ask others questions..but most importantly how you receive the answers. you seem to really ponder them…not just blindly accepting or outright disagreeing with but rather carefully considering them.   morgellons is so out there and nutty it has caused me to be much more accepting of other possibilities.  no matter what subject the question is on it seems to bring me back to the issue of   “needs not being met”.    ok bare with me as i try to communicate what it is i am trying to say.  these needs that are not being met,  they are everywhere…health care providers are not meeting patients need.  insurance companies are not providing the health care industry with what they need to be healers. food is not  providing our nutritional needs (that goes for humans and animals..our feed lots are horrendous..then we  eat that animal product).   the unmet needs list is too long to list. that needs to change.

      i do feel like i would have never become as ill as i was if in the beginning of my illness some basic needs were not so blatantly ignored.  i don’t blame anyone for my illness but if i had to point fingers the first group i would line up and cuss out would be the doctors. in honesty though i now know it was my lack of education in the begging that caused me to have so many bad experiences with bad doctors. i now can report excellent  experiences with gifted healers. i just did not know any better. i didn’t know how to negotiate the whole business of finding the  appropriate doctor for my illness. which sucks for sure.  i wasted loads of time and money with crappy doctors. that whole time i was unable to work and i just got sicker. towards the end of my all time low i found myself even sicker and my resources almost completely gone. i have to say i did manage to hold my head above water longer then most could have. i was on my own paying high rent in a big city and unable to work.

 i also went from looking good to looking and feeling bad really fast.  i was thin  to start with and then lost about 2 or 3 pounds a month over a six month period (i weigh about 120 naturally).  i was eating more than ever but still unable to hold weight. there was talk that i was bulimic . that was such an insult to me..i love love love my grub and the idea of puking it up is revolting. i am not insulting those that suffer the illness of bulimia  or anorexia.  just saying for gods sakes did anyone that claimed to know me even know me? i also was starting to really lean into the subject of food, nutrition and was trying some health “nut” stuff. so i was viewed as a nut and probably just another hypochondriac.  so i lost a lot of friends but in hindsight i lost nothing and i gained a lot.  i also never had grandparents and lost my mother when i was very young and the person that basically raised me (my aunt) died in the middle of me being sick. that left me with only about 4 family members and two of those members were / are quite ill themselves. that would be my dad and my sister. my sister also suffering form morgellons and all the fallout at the same time as me. the very ill often have nothing (seemingly) to offer and i believe this lends to our sick becoming sicker.

     back to the subject of “needs not being met”. this is how i got so sick but when my needs were met i could start to recover my health. i needed health care. not just the herbs and good food you hear me talk about i needed a real doctor that took me seriously. when i moved to london and had to do one of my er trips they actually helped me rather than insult me.  let me be clear. i’m not saying the care is way better here in the uk (actually it is way better but still needs lot of work). the difference for me was probably my accent. they probably only did not judge me as harshly as i had been judged by the los angeles county doctors (an american living in the center of london is probably not a complete low life in their eyes..ugh). so there was another need being met. i needed not to be judged. not by a doctor. i needed the doctors to leave there egos out of my healthcare.  i also needed health care that was not emergency care. this is a massive blow to any economy when someone is so sick and they can not get regular health care.. they invariably end up at the emergency room. there is where a naturopath and lyme dr met my needs.    in addition to needing real health care i needed real friends..or rather real moral support. once i found that in the lyme and morgellons community and also found a real human in real life (my x husband), there was faster movement in my healing journey.  many needs in my life before i got sick were not being met. i  lived with a lot of stress. pretty much the only things i have left from my old life  were the only things i had of value. so that complete loss of so much was in the end a great aide to my recovery. 

   ayla, there is a lot i did not say here..there is lot more thought behind the words. one of the reasons i am drawn to you and your art is it / you represent to me how someone  can get what they need by providing to another or others something they need. this is the ultimate in practicality.  it is a way to get a big  job done with less energy expended.  

      it is a way to find healing in ourselves while providing something that another person or people need. it is a win win situation. morgellons is so difficult to live  with and heal from i have found that this “broader spectrum” approach has served me well. i think probably you too. as we set out to educate ourselves we share and give and then we all win. i think that’s why when i search for solutions to problems i am continually brought back to real food.  it is the broadest spectrum healer. it is the most basic need animals have and that is not even being met. not on a nutritional level.  humans might be fat but they aren’t happy because they are sick.  i think this is why i tried to focus my blog on food. i truly believe that real food is a real start to providing a lot of unmet needs, not just for the morgellons community but for the planet.

  so ayla, half way through this message i realized i was combing a message and a post (broader spectrum approach technique..heehee).  your thinking and communicating has caused me to think and communicate. thank you for that. i would like  to put this message in a post and also feature your morgellons awareness website and your amazing artwork. would that be ok?  best to you ayla, tina

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