Autism: An On-going Journey Forward

Today I attended the TACA fundraiser luncheon and fashion show.

Honestly, I had such a wonderful experience today at the TACA (Talking about curing autism) fundraiser fashion show.  Of course, I don’t get out much.  So, when I get a chance to sit with other adults, it’s always a serious treat.

I met some incredible women, some who also have a child with autism, who shared and/or understood many of the experiences I’m going through daily, and that was very affirming. Listened to an amazing young lady speak (for the first time addressing an audience!!) who has autism and she spoke of what it is like to have the disorder & how her mind has functioned in various situations.

I cried when she so adeptly described some of the behaviors our son displays and what was going on in her head when she would do it. It was like having a small, but amazingly private view into my son’s head for just a short moment. She shone a light into his world for me and I am so grateful.

And, last but not least, a fabulous neurologist from Cambridge spoke.  She has recently moved her clinic to San Diego/Del Mar and practices what I’ve been searching for – a whole/holistic approach to supplements, dietary measures, and neuroscience all wrapped into one treatment center. I cannot wait to meet her in her office and walk down that path, too.

A special thank you to Stephanie Fink Lundstrom, who sponsored this event through Jockey Person2Person.  She is a wonderful person, my fashion guru, and a great saleswoman!  Image

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The Nancarrow Project

There are 35 potted plants on my front porch. They came from my coworkers at Fox 5. Apparently, after 3 decades they’ve noticed how much I like to lecture people about plants. As long as we’re on the subject, don’t throw away those “meat diapers” that sit under uncooked meat. Instead, soak them in a glass of water, the remaining red liquid (really it’s just bloody water) makes for an amazing organic nitrogen fertilizer for plants. 

So, back to my work buddies…and the 35 potted plants I’m now tasked with caring for. Gee, thanks guys! The truth is I’ve worked with some amazing people in this town starting at Channel 8 in 1980, 10 News in ’98 and for the last few years at Fox 5. In their profession they see the worst society has to offer—yet they are genuinely empathetic and optimistic despite it all. They are the off-hour…

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A burning ring of fire

I lay in bed, soaked.  Every part of me touching a surface is burning, damp, and unbearably uncomfortable.  I feel sure that if an infrared camera were focused in my direction, the entire screen would be lit up.  I lay there in a burning ring of fire.  Unable to escape it.  I get up.  Flames are shooting from my head.

I turn on the little fan.  It does no good.  I’m still hot.  HOT.  I wander the house, wafting my nightgown in the warm house air, which isn’t helping since it is damp already.  Finally, I turn on the air conditioner.  I cannot believe I’ve turned into an energy sucking vampire just to cool this fire off that surely will consume my entire being if I’m not cautious.  I’m positive that I’ve already lost many, many brain cells in the terrible inferno that my body ignites randomly, vengefully, encompassing my every acknowledged skin cell whenever it pleases.

I’m sure I am not the only one with this burning.  No, guys, it’s not desire – sorry.  It’s the hell bent effort of my hormonal system trying to prove the phenomenon of spontaneous combustion.  I’m sure it will give proof one of these days.  The fire officials will find a heap of ashes in the shape of a menopausal woman.

It starts with my scalp and face….I feel just a bit of warmth, tingling, perspiration begin.  I swipe at my face.  I despise sweating and yet I am proficient at it during these moments.  My head starts to kindle.  My scalp feels like it will surely burn off each and every hair like a million fuses set to blow the dynamite that is surely embedded in my skull, because its follicles surely could not survive the coming hellfire.

Then it spreads.  Uh, oh.  Now I know I’m doomed.  My entire back begins to burn and now I know there will be no redemption from this slow, excrutiatingly painful fire across my body.  Of course, when I’m sleeping and this happens – I can wander the house like a ghost, not bothering anyone and certainly not facing anyone.

Then there’s the times that I’m out and about, running errands, and trying to get work done.  I stand at the counter of the post office, trying to get some packages taken care of, and suddenly it begins.  I cannot explain to the person taking my packages, my money, watching me strangely as I fan myself and sweat like I was putting out a fire on my skin……Oh!  Wait!  That’s it!!  That’s exactly what my body must think its doing: Putting out the fire.  In private, that’s just fine.  In public, I feel like some kind of freak.

I’m wiping my brow, pulling back my hair, which is now soaked like I had just gotten out of the shower, and I stand there and assess the person I’m dealing with to see if they will “get it” if I say, “I’m having a hotflash”.  Sometimes I do say it.  Occasionally, when I do, there is an instant recognition in the person’s face and they respond similarly.  More often, I think I must seem suspicious.  Like I’m nervous.  Of course, it does make me a bit nervous….in fact, downright anxiety-ridden one time when I was standing in front of an audience, interpreting, and suddenly a half-hour or so into the show…..BURN baby BURN!  Oh god.  It was awful.  I could not cool down, I could not swipe at my brow and interpret at the same time, I became a distracted, forehead-dripping, disaster of a professional interpreter.  Those are the types of moments where I wish I could hide in a hole somewhere – at least it might be cooler there.

I don’t interpret any longer, I’m retired to care for our small children.  But, those late night sweat fests of the not-so-fun kind are apparenty here to stay.  I feel sure we could bottle that heat and use it for clean energy, no?  Well, maybe not.

Swinging my nightgown to and fro, sitting in front of the air conditioner vent, I’m feeling much more like myself now, thanks.  Until next time…

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Sometimes all you need to do is ask.

Sometimes all you need to do is ask.

It’s a simple statement, but often very difficult to carry forward.  I, like many others, find it tough to ask for help.  It’s difficult to ask for friends or family members to step away from their own busy daily lives in order to help me in mine. In fact, one of the most difficult things to ask of someone is for financial help.

No, I don’t need any money.  And, no, I’m not asking you for any financial help for myself.

Let me continue.

Recently I attended my yearly conference for mosaic artists around the world.  Mine.  Why do I refer to it as my own?  Because, it is mine: I am a member of the institution, the non-profit membership, which re-ignites and sustains me and my mosaic passions.  Thus, I believe, each of our members can lay claim that it is their own, our own, as a group and as individuals within a group.

A membership is a unique thing.  It can imply ownership and involvement, when truly there is none expected or given.  Or, more appropriately, it can be absolute in its aspirations to be member supported and operated.  It can describe a group like my SAMA, the Society of American Mosaic Artists (an international group, despite the title) where there are supporters, affiliates, sponsors – those who identify with the group, assist in sustaining their objectives, and fiscally lend power to the group to support them.  Then there are volunteers – and volunteers are always needed – members who donate their time and expertise in order to assist their association and their conference to not only survive, but to thrive.

At the conferences where I can attend, my creativity is fluid for many moons after saying my final farewell to fellow artists.  Early in the group’s inception, American Mosaic Summit was chosen as the description for the annual conference.  Summit seems inappropriate to me as it refers to something high, out of reach, elite; something that must be climbed, endured, defeated in order to claim your right at the top: The Summit.

Instead, I ever-so-predictably rebel against this notion and lean toward the idea of calling it simply a conference: A meeting of similar-minded humans directed toward goals within the same field of study, a forum for discussion, a seminar for learning from each other, and a family of friends and colleagues.

That cumulative equation of these elements is a beautiful and fragile thing: Which leads me back to my original statement about asking for something you need.

SAMA maintains one employee, the untiring Executive Director, Dawnmarie Zimmerman.  And, there is one very part-time employee, the ever-so-patient Chris Forillo.  That’s it.  Everything else is accomplished by volunteers at all levels within the organization from the President of SAMA (currently Shug Jones) to the organizers of every part of the conference, creators and upkeep on the website, and writing, editing, and finding funding for the newsletters.

While attending the general meeting at this year’s conference, I realized SAMA continues to struggle to stay above water in finances while providing amazing resources and an annual conference that is a lifeline to creativity and rejuvenation each year for our members. I’ve been following the general meetings for many years and know that there have been setbacks (an unscrupulous gallery owner during one MAI – our big Mosaic Arts International juried show of artwork), as well as simply not garnering enough monetary donations and membership fees each year to cover everything involved in the annual operations of SAMA and our conferences.

I decided I might be able to do something to help our organization, even if it was something very small.  I asked myself, who better to help our organization than our own members?  I asked Dawnmarie if I could take a moment before a presentation that afternoon and address our attending members.  She agreed.

My objective was to make a plea for a small donation from those who I was well aware had already paid membership fees and conference fees, and hotel costs, but who might be willing – like me – to support our organization by donating another $5 at that moment.

Five dollars.

My intention was to set a short term goal of raising a thousand dollars in just a few hours, which would hopefully spur members on to continue to donate $5 (or more) each month to our organization’s general fund.  However, because we are a non-profit, SAMA has not been able to set up a program for automatic-continuous donations for those willing to do so.  So, currently it’s up to individual members to go to the site each month, hit the “donate” button, and send $5 or more via the website.

Anyone who knows me is aware that I’m no wall flower.  I don’t mind public speaking and certainly not in front of the members I affectionately refer to as my mosaic family. But, asking for money is a difficult endeavor regardless of who you are addressing.  I honestly didn’t know what to expect when I made my plea for funds.

What I got was amazing!  I felt pure elation that those who I respect, those who I call my mosaic family, those who have given so much already would step up and not only answer my call for a $5 bill from their wallets, but would do so in droves, with smiles on their faces, and many gave much more than the $5.  I stood at the front of the room, with tears flowing down my face at these amazing people who didn’t hesitate to give more out of their pockets to support an organization to which we obviously all believe in.  I stood before a group of perhaps 150 people and we – WE – garnered $650 for our general fund.  Six hundred and fifty dollars my friends, my family, my fellow members!  I’ve never been so proud to be a member of a group before.

Then, something remarkable happened.  It didn’t stop there.

I had members who were not at the presentation who continued to approach me over the next few hours and express their desire to participate.  Members who had heard what my request had been and who also wanted to give their own donation.  I was asked to make another announcement, another plea, at the next presentation for those who may have missed the first one.  Nervous, I agreed, but asked my friend Veronica to hold my hand while I stood in front once again.  I knew from the first time I stood there that I was going to feel very emotional about what I was trying to accomplish.  So, with Veronica’s hand aptly being crushed in mine, I stood up and I asked once again.

My members, my friends, my mosaic family stepped up once more and filled Veronica’s hand with a stack of money and checks – I don’t know about everyone else in the room – but I was simultaneously laughing and crying and celebrating the joy at being a part of this amazing group of artists.

At the end of the day, I had handed over to the Executive Director my goal: A thousand dollars.  A thousand dollars!!  She sat down with me, tears running down her cheeks as well, and said, “People are always saying all you need to do is ask, but…”  She didn’t need to continue.  I understood all too well.

It’s difficult to ask for what you need.  Some of us have a harder time than others.  But, in that last minute decision of mine to go ahead and “just ask” our members for even more support to help pull us out of the red and start a reserve for our organization’s general fund; I knew I had done the right thing for our membership, our general fund, and for allowing each and every member to see how powerful and amazing we all are when we stand together for a cause.

Thank you, my fellow members.  I cannot thank you enough for your incredibly generous and loving display of support during the SAMA Lexington 2012 conference. 

I want to leave each member, whether you attended SAMA 2012 this year or not, with this last request:

Give what you can and know that every single dollar goes toward sustaining an organization that exists solely for each and every member as individuals and as a united group of amazing artists.

With a smile and some seriously sincere gratitude,

Amber J. Pierce

FYI:  It’s easy to give $5 or $500 dollars: Just hit the “Donate” button on the www.americanmosaics.org website. 

Chasing the Invisible

Ever feel like you are chasing the invisible?  A pain, a nuisance, an infection.  Whatever it may be, it’s a strange enigma to chase down something you can’t actually put your finger on.  Sometimes it takes someone looking into the situation to figure it all out for you and point out what was right in front of you the whole time.  I have several examples of this phenomena in my life lately.

Sometime last year I began to feel tapped.  Not in the tapped-out sense or the tapped-for-something great scene.  No, this was more like how my pain specialist explained back and neck pain to me years ago.  I was injured in a car accident years ago and still feel the pain of it, some days more than others.  Regardless, when I was being aggressively treated for the pain a few years ago I was speaking with my pain specialist about my frustration that such a small area of pain could cause such disruption in my daily life.  I have a high tolerance for pain and normally just try to ignore it or work through it.  This was very different.  I couldn’t put my finger on it.

My doctor explained it this way:  When someone is tapping you on the shoulder, you respond by looking at them, acknowledging their presence, and moving away from the sensation of the tapped spot on your shoulder.  However, if that person continued to tap on your shoulder, it would become annoying and difficult to ignore.  Further, if the tapping continued for months on end, you might be brought to the brink of sanity trying to deal with the pain and distraction it had brought into your daily living.  This was the answer.  This was exactly how I was feeling.  I couldn’t ignore the pain any longer, I couldn’t get rid of it, and had to just come to terms with it so I could go through my daily routines without its constant disruption.

Last year I was experiencing this tapping with a person, not pain, but with much the same resulting disruption – albeit emotional and not physical.  Yet, I have to take that back.   It was physical because our emotions cause physical reactions within our bodies and I was feeling something that took me a few months to actually figure out.  It was like that tapping finger…I was being tapped.  I just couldn’t figure out why small things that were said and done would set me off into a depressive reaction and make my body feel unhealthy.  Remarks and actions that seemed so trivial, so off-handed, so passive were getting to me.  The upset feeling continued and once again I just couldn’t put my finger on it.

Much like the revelation that the doctor caused when he explained my pain cycle, someone helped me understand this feeling.  I suddenly realized that I was permitting this person to continually tap my shoulder.  Allowing this person to cause disruption and unhealthy reaction in my daily life.  It had to stop.  But how?  When someone is your friend, you take the good with the bad, and accept them for who they are….but, what if they aren’t accepting you as you are?  Ah hah.  That was it!  Slowly, I realized that I knew what I had to do for my daily health.

I was at the doctor’s office today chasing the invisible yet again.  Unlike the pain from the accident years ago, or the person who didn’t actually want to be in my life and was showing me doors to open so that person could leave;  This is an infection.  Invisible (to the naked eye) and so darned tough to catch.   My eyes suffered for 3 days and antibiotics finally had to show the infection the door.  Then it decided to move downstairs into my nose and throat.  Before it could take up permanent residence, the doc put me on a stronger antibiotic which will take a full ten days.   I normally avoid antibiotics as much as possible so as to avoid misuse and unneeded treament, but this was different.  I could feel the tapping, it was already annoying, and soon to be something that had to leave my daily life or I would be driven to distraction.

Chasing the invisible isn’t easy.  Figuring out what direction you need to look, what path to take, and figuring out what is really happening often requires an outside viewpoint.  Choose a wise set of outside eyes and ears to partner with you for any expedition you take in the future ’cause chasing the invisible isn’t something you should do alone.

Healing

Healing is such a non-specific word that can encompass so many things. Are we talking skin damage like a bruised knuckle, a scraped knee, a limb that is lost? Or, emotional repair? Have you dealt with a sorrow, a pain, an indescribable yearning for something lost?

I go to the Naval Hospital for most of my medical care. While there I often sit in the large courtyard and watch the wounded warriors pass through. Shrapnel scarred faces, looking forward, focused on their path. Sometimes they wheel by, legs gone right up to their hips. Sometimes they travel past me, leg in some form of bandaged state, crutches being handled with thrusting briskness even if one of their arms happens to also be missing. Often they walk by, prothesis in place – a nike-covered false foot connected to a set of jointed, metal bars that attaches somewhere north of the thigh. All of them are here being treated for wounds, most from a war they are often too young to truly understand. My heart cries for each of them. Not for pity; but in sorrow, anger, grief for what each of them has lost before they had a chance to use and appreciate what they had. Each young face that passes, with pride, hope, and strength. They are not to be pitied. These are brave young men and women who volunteered to serve in the military, to go where they were told, to do what they were told, and to attempt to protect lives of those around them in a foreign country with whom they often could not even communicate with….

I sit in the courtyard waiting for an appointment to see my surgeon. She will go through the details of the procedures to cut out a section of my thigh and to cut into my groin and remove lymph nodes for biopsy purposes so that I understand every step.  I understand.

She reviews the procedures I’ll need to follow for recovery.  She says to me, no lifting, no walking (except short shuffles to and from the bathroom), no driving….blah blah blah for the first week and then basically I can do a bit more after 3 weeks.  I laugh.  She looks perplexed.  I laugh more and say, “I have two small children.  Trust me, I can’t be down that long.  I’ll be up and going within the week.”

My surgeon smiles and nods.  She already knows what I don’t — I’ll be down for at least a week, guaranteed.

Then, she turns and asks what type of pain medicine I’ve used before, my husband laughs and shakes his head, “she won’t use it, don’t bother”.  He knows me too well.  I have a hard time using pain meds ’cause I always feel so off-kilter, so not-normal, so comfortably numb…it’s quite disconcerting to me.  Besides, I heal well.

I heal well. I know this because this isn’t my first rodeo.

I’ve had a double mastectomy, encapsulotomy, and reconstruction about 10 years ago. Whew! You should have seen those scars! Stiches everywhere on my chest — but, you can barely tell these days. I still have some residual numbness and bizarre phantom pains, but I hardly ever think about it. I am still me.
And let’s not forget two c-sections – two huge babies!! Scars are healed…still there, but gosh, it was worth it to cut me open in order to not break my children’s collar bones to get out of me naturally. I had so wanted to have them naturally, but sometimes nature has other plans. Gotta roll with the punches.

So, roll forward to today.  My surgeries have been completed last week to remove the cancer from my thigh and to remove lymph nodes for biopsy. I came home with a large, 8-inch-stitched line right up the center of my thigh and a smaller 4 inch one along the fold of my leg/groin area.  Not fun.  In fact, for the first time, I stayed on those pain pills darn regularly.   The best advice was to stay ahead of the pain and stay on schedule with the medicine.  It was good advice indeed.  Until today…I woke up invincible – well, so I thought.

Today I woke up and felt different.  I can’t explain it more than saying I felt like I turned a corner in the pain & healing arena and I decided to try and make it through a day without it.  I did really well and I’m happy to be moving forward in healing.  However, broke down and took a pill tonight — whew! was my body pissed off that I thought I could rule the world today. :0)

“Not today”, it whispered to me, “but, tomorrow’s a new day and we can try again”.  Okay, body.  Keep on healing.  I’ll just sit here and read for a while….

Contemplation

Sitting here last night, contemplating the artistry that the surgeon created with her ball point pen on my thigh showing the second area they will be removing, I thought: Gee, this is a cool design.  I should make a mosaic of it.  It’s the shape of an eye.  The protector eye?  The all-seeing eye? The ayes have it?  Oh, wait, wrong “aye”.

Looking at it now, I am reminded of my friend Yvonne Yaar’s artwork of glass eyes….the protector kind that you see over doorways.  Eventually, I probaby will create something in it’s form.  It will be cathartic, just like writing is, for me.  It’s a lot larger of an area than I expected stretching down the length of my thigh. (Yvonne’s artwork can be seen here: www.YvonneYaar.com)

Contemplation, that’s where I’m at now.  Just thinking about it all, studying what is happening, meditating a bit more since my blood pressure (which is always quite low) was a bit high yesterday during the anxiety of it all.

Contemplating choices that no longer exist is a waste of time, decisions that have already been made are to be accepted, waiting is all that there is: Now we are just waiting.   I think I’ll go create something with the kiddos, roll some clay out, and let them loose with it…it doesn’t get better than that, now does it?

con·tem·pla·tion  (kntm-plshn)

n.

1. The act or state of contemplating.
2. Thoughtful observation or study.
3. Meditation on spiritual matters, especially as a
form of devotion.
4. Intention or expectation

(google hit: The Free Dictionary)

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