Today the words are my creative genre of choice. Survivors are encouraged to submit written entries, including but not limited to Survivors’ Stories for YEAR 2 of the Art For Arachnoiditis Project. Entry Deadline Feb. 15, 2016.

Right now, I am thinking and so… WRITING ABOUT VANITY and LIVING AND WORKING WITH ARACHNOIDITIS

In the past, as I got ready to go to work or out to dinner or some other socially exposed activity, I would say, “I am going to go get a little less human before I go out.” This meant, the usual shower, hair, make-up routine was going to monopolize the bathroom for about an hour. Doing the things that “enhance our natural beauty” so that we blend in with the rest of the people doing the same is an expected, if not required, prerequisite for mingling in “civilized society.”

In high school, I remember this ritual being as much about masking the real me as it was about “creative individual expression”.  Military service and parenting reduced my interest, compulsion and dependence upon it. Gradually, it just evolved into my morning routine without much fanfare of creative input.

Survival and recovery impact the individual sense of vanity. Be it the superficial cliche concept of “beauty” or a long-lived appreciation of our “inner beauty”, our self-image seldom escapes the experience unscathed. For all time but, especially, in modern culture; the pressure to conform to the concepts of beauty and grooming of the status quo is directly linked to our ability to be taken seriously by the influential populations of society.

Not only must Survivors overcome the physical limitations imposed upon them but, we must also find a balance within ourselves which allows us to reconcile the alterations in our physical appearance which result from that struggle. Sampson I am not, but I have to admit to a certain deep depression when the immune response associated with Spinal Arachnoiditis caused much of my hair to break and fall off. I kept telling myself, “It’s just hair. It’s not that big of an issue. You have bigger problems to worry about right now.” All of which were true statements that did little to alleviate an increased sense of injury to my person and my own perceptions of my place in society at that time.

Because it is a habit that is an intrinsic part of our culture which we grow into and except, until or unless, it is threatened or the ability to “conform to the norm” becomes complicated, we don’t realize that, “Hair is an object of intense elaboration and preoccupation in almost all societies. Hairstyles and rituals surrounding hair care andadornment convey powerful messages about a person’s beliefs, lifestyles, and commitments. Inferences and judgments about a person’s morality, sexual orientation, political persuasion, religious sentiments and, in some cultures, socio-economic status can sometimes be surmised by seeing a particular hairstyle.” The Social Meaning of Hair ~ Chicago Kent Law Review

For whatever genetic/environmental reasons, I began getting grey hair when I was 23 years old. I was okay with that until my son came home from school one day and said, without any malicious intent, “You know Mom, you kind of look like that bag lady that hangs out in front of the grocery store. I think it’s because of your hair.” So, I began coloring my hair.

For some of us Living with Arachnoiditis, increased chemical sensitivities are a consequential outcome. In addition to the adverse reactions to medication trials for “treatment” of Arachnoiditis; several years ago, I began to notice a remarkable increase in my pain and inflammatory symptoms after I took the time to color my hair. Keep in mind this was NOT a routine occurrence. At that point I was only doing it every three months or so. The correlation was difficult not to notice. So, I cut back on it even more and changed the use to only the color that washes out in 28 days. Still, I only used it every few months. Gradually, I decreased it to only using half the product at a time to streak a color similar to my natural color into my hair.  I was okay with a white streak here or there that reminded my of my mother but was not ready to be “openly grey” just yet.

The reasons for this effort? I have been brain- washed. Yep. Also known as, accepting the cultural norm, I had come to associate my OWN impression of my health and wellness with my physical appearance and was painfully aware that the people around me did, too. When my hair color was all washed out and faded I didn’t look “vibrant, young and energetic” but more importantly, IN MY OWN EYES; I didn’t LOOK “healthy”. Since then, I have, in many ways, re-defined that word “healthy” as it pertains to my self awareness.

As I write this, I am still struck by how frivolous this topic feels but, I KNOW that women AND men depend on how others see them as a means to social connection and “success” in society. The reality is, that our appearance can condemn us to a marginal existence. Subconsciously, we fight against that. We think nothing of using the convenient products available to us to allow us to prevent that from happening.

After the damage, I found shampoos and strengtheners for my hair that allowed it to grow and “recover” from the inflammatory phase of my illness. I began searching for more natural ways to add a little color to my hair but, I continued using the 28 day partial hair color treatments in moderation about every 3 months. Looking “healthy” is,after all, directly linked to feeling “healthy” …isn’t it?

I was cool with that. UNTIL… I found out about all of the neurotoxins and carcinogens these products contain. Considering my first hand knowledge of my post- arachnoiditis -onset sensitivities to polyethylene glycol in Miralax…a frequently prescribed “safe” treatment for issues associated with spinal cord injury…I came to the logical conclusion that perhaps the contents of these commercial products may NOT be the safest thing for me or for anyone already dealing with extensive nerve damage from OTHER causes.

I QUIT. August 8, 2015, I quit commercial hair care products cold turkey.

Suffice it to say, my hair went “cray-cray!”

There is a period of adjustment in which our body must rediscover the ways to balance our natural oils after we stop using the products which have created an artificial rhythm for them. It was summer, I washed and rinsed using the “no-poo” method, put my hair up and went on with my day.   It took a little time for me to find out what my hair type really is without all of the artificial additives coating it. I discovered the baking soda wash option wasn’t the best thing for me.

Economic Hardship is not a rare consequential condition of Spinal Arachnoiditis. The COST of organic hygiene and hair care products is exorbitant. As I have been exploring the nutrition value of the naturally occurring plants here, I decided to find out which ones can be used to better feed my hair, too. This is what I found …and for me, it works!

Don’t get the wrong idea. I have as many bad days AND bad hair days as anyone else. Some days my hair is just so fragile and breaks off in piles or just looks so ridiculous that I am tempted to go back to the commercial method. But, I am determined to see this experiment through.

I REALLY want to know if leaving these chemicals behind will reduce the amount of pain I experience. Winter will be the true test.  I am coming to truly believe that the use of these and other chemicals is directly proportionate to the extent of my “Recovery” and the frequency of my “Flares.”  I now make my own shampoo, conditioner, and deodorant for personal use. Because of my increasing exploration of Ancient Wisdom and the Wild Edibles and resources available in my own back yard, this experiment is exactly in my price range.

Additionally, this experiment is having a residual positive outcome that I did not expect. I feel more empowered and in control of what happens to my body because I KNOW exactly what is going into it. This feeling is PRICELESS.

And well, we absorb so much from the environment through our skin, how can it possibly make sense to intentionally ADD the harmful things?

I have to admit that I feel a bit conspicuous on my cray-cray hair days if/when I have to go out in public but, I am starting to understand that my hair actually has cycles which relate to the rest of my body in a way that was hidden by commercial products. It really was only NATURAL that it fell apart when my body did.

WHAT YOU SEE IS WHAT YOU GET, OR IS IT? 

On the bad days, I don’t want to feel what you see any more than YOU want to see what I feel. It’s human nature to want to avoid the negative and to “fit in” with those around us…to want to be accepted by those who reside in the social circles we wish to engage. However, it is too easy to lose track of what really matters when we only focus on that instead of who we really are….

For Arachnoiditis Survivors and others Surviving with “Invisible Illness” the craving for connection can be quite harmful when we let it interfere with what our bodies really need. I am still learning to listen to my body and to take action to DO the things that support its strengths and acknowledge or possibly repair its weaknesses.

NEW DISCOVERIES (November 24, 2015) As my hair continues to break off because of its naturally fragile state, I kept looking for organic methods to strengthen it. The challenge is to find the ones that grow locally. Egg whites are also reported to help, however, I have a difficult time rinsing them out with organic shampoo. In any case, I just came across a line of organic products by Shear Miracles (not an affiliate link) which contains many of the plants that I have been unable to find here.

I don’t expect to find them this year. Snow is falling as I write this. I am going to try the Tuff ‘N Up Shampoo. It is a little pricey for me. However, after removing all of the chemical-based ingredients from my hair, it really doesn’t take much to clean it. I definitely don’t need to wash it every day anymore. About a dime-sized dab of the purchased ‘poo twice a week should be enough. In between, I can continue to use the healthy home made mix that I have here…if I need it.  

Today, THIS Resonates with my thoughts about Struggling to Change My Way of Life…”It is about gaining perspective and consciously choosing a way of life. “~ slk 11.27.15

UPDATE 2020 ~ OPENLY GREY ~ Doing and making more Things 

RELATED LINKS

“What Your Hair Really Says About You” ~Psychology Today

“Accessory or Identity, What Does Your Hair Mean to You”

“My Hair, My Identity, My Security” 

“Harmful or Carcinogenic Ingredients in Our Skin Care”

“12 Toxins in Personal Care Products”

“Contaminating Our Bodies With Everyday Products” ~ New York Times

The Rest of the Art Every Day Month Series of Posts are  Here 

NOTES FROM AEDM 2015 DAY 1

I have decided to participate in Leah Piken Kolidas’ Art Every Day Month Challenge atCreative Every Day during the Month of November. For the first time, as I do this 30 day challenge, I will be posting my progress HERE for arachnoiditis survivors and advocates.

I hope you will join me for this creative journey. If you are an Arachnoiditis Survivor creating any art during the series that you would like to share with The Art For Arachnoiditis Project feel free to do so in the Art For Arachnoiditis Project Facebook page, share links in the comments below, or submit the work for use in YEAR 2 of the Survivors’ Art Exhibit. (Accepting Entries until Feb 15, 2016.) Although the Art By Survivors’ exhibit is open only to the Survivors; other creative minded individuals are invited to share in all of the other places.

SUBSCRIBE to get the quarterly Art For Arachnoiditis Project Newsletter

WATCH VIDEO FROM OUR 2015 SURVIVORS’ ART EXHIBIT HERE

SHOP Awareness Art,Your purchase will benefit the Art For Arachnoiditis Projects at the studio. These fair market prices are not tax-deductible purchases.or Make a tax-deductible contribution via our Fiscal Sponsor,  NYFA [New York Foundation for the Arts] Or by check payable to the New York Foundation for the Arts, Memo: The Art For Arachnoiditis Project mailed to: SheilaLynnK Art Studio, 345 South Main Street, Wellsville, NY 14895.

To submit original art to this catalog to benefit the Art For Arachnoiditis Project Awareness Efforts. Send submissions with your signed Art In-Kind Form to sheilalynnk@yahoo.com subject line: Add My Art

This is the first time I will be doing daily art for The Art For Arachnoiditis Project. If you have never seen these posts before; you can get a better idea of what this is all about by checking out a A Few of my Similar Month-long Projects/Posts/Series from the Past.