HEATHER’S STORY

heatherleaf

When I was seven years old, I was bitten by a tick.  One morning I was sitting at the kitchen table eating my breakfast and I pulled a fat bloodsucking insect out of my head.  It fell in my cereal bowl. I remember noting the contrast of its dark shiny skin floating in my milk.  This was most likely one of many bites throughout my life.  I grew up in nature rich northwestern New Jersey and was a curious girl.  From picking berries in the woods to feeding cows at the farm, I was frequently exposed to the unseen danger of tick born disease.

hospitalbedcroppedNot long after this bite I came down with a mysterious hip infection that landed me in the hospital for weeks.  I was sick with a wicked case of strep throat or so everyone thought. Overnight I went from feverish to down right crippled & hallucinating.  The pain was searing and I was convinced my Grandmother’s fur coat piled on a chair next to my bed was a coiled up snake that had bitten me.  The doctors pumped me full of antibiotics which was a saving grace of sorts.  They didn’t know it but they were killing borrelia, the bacteria behind Lyme Disease.

I continued to limp through life with a menagerie of recurring symptoms that held me back.  Frequent childhood illness turned into an adulthood of excruciating periods, rogue joint damage and years of complete debilitation.  Looking back I see a sensitive little girl who, along with psychological & emotional trauma, was burdened by a sinister undetected infection.  Together these stressors conspired to create dis-ease in my body that I went on to carry for decades.  Every cellular nook and cranny stored fear and anxiety that I couldn’t openly express and overtime I accepted that it was my ‘normal’ to not feel well and for life to be painful & difficult.  But GOD gifted me with a radiant light and great strength that carried me through.  houseDespite the hinderances of a broken family and afflicted body I was highly motivated to achieve and went on to have loving relationships, create beautiful art and build a career.

At the age of 29 I purchased an old house that I was determined to update and transform.  This ignited the design savvy homemaker in me and I became obsessed with visions of the property’s potential.  I gutted rooms, built stairs, poured concrete, stained and painted everything, amassed a large arsenal of power tools and would work until the moon was bright in the sky.  I had surely found my passion and nothing was going to stop me from improving the aesthetics around me.  However, growing up a victim of abuse and neglect had caused a lack of care for my own well being and with the compelled artist driving the bus I was headed for a crash.  For years with each DIY project I took on I naively exposed myself to high levels of toxins.  Every renovation forced air born asbestos, lead, mold & chemicals into my body.  This was simply asking too much of detoxification pathways that were already burdened with unchecked infection and my barrel began to overflow.

Adding insult to these invisible injuries was the emotional strain that never let up in my life and crescendoed with the death of my sister when I was 32.  After ten years of loving her from a front row seat in the circus of addiction her body broke and she left me.  My worst nightmare came true.  The late night call I had been dreading was made and my mother’s voice delivered an assaulting, “Crystal’s dead.”  The most painful waves of heartbreak crashed over me and I was convinced I would drown in sadness.

littlehcrystalcropped yaffa     headstone retouchedcropped

So it is no coincidence that my health took a turn for the worse in 2008.  I was running out of room to store toxins.  Running out of room to store pain.  My first symptoms were intense insomnia, anxiety and crippling chemical depression.  I pushed through and sought out my favorite drug of choice, distraction.  I planned an overseas wedding and then a major kitchen and basement renovation that ultimately pushed my body to its breaking point.  By spring of 2009 I was fully debilitated.  I awoke one morning to silent screams coming from my pelvis.  I could barely walk as the great dark visitor of crushing fatigue reared its ugly head.  I fell to my knees and prayed to GOD, begging and pleading to not be relapsing into the same disabled state I found myself in when I was 18.  For two years right after graduating high school a battery of impairing symptoms took me out of college and onto welfare.  lymecouch copyI sat and rotted in my room with no support or intervention, greatly alone and confused.  I knew something was seriously wrong with me but convincing my friends and family proved impossible and a feeling of defeat set in.  I clung to the only thing that would allow me to, my art.  I would wait until the house was quiet at night and then spread out my colored pencils and lose myself.  In time major changes to my diet, Chinese herbs and some warm months spent with relatives on the island of Puerto Rico helped bring me back.  This dark period of my life was always my most feared place to go.

IVDespite my desperate prayers to not be sick like that again GOD had other plans for me and a miraculous sudden healing was not one of them. In turn I lost faith, went numb and became spiritually lifeless.  A month turned into a season and summer somehow became winter and I was still there on the couch, imprisoned in my house, television my warden.  I could see the sun outside but not feel it.  I knew life was happening but couldn’t be a part of it.  I made it out only for doctors’ appointments to rattle off a list of symptoms that made their heads spin off.  My case was quite complex and the medical community didn’t know what to do with me.  The combination of Late Stage Tick Born Disease and Sick Building Syndrome was the perfect storm and I was lost at sea.

In January of 2010 I finally received an accurate diagnosis for Lyme Disease.  Looking through this new lens provided a clear picture and a lifetime of unexplained illness and injuries now all made sense.  It certainly wasn’t good news that I had this complex disease but knowledge is power so now I could do something about it.  I instantly began to treat Lyme and the associated co-infections I tested positive for, including Babesia, which is similar to malaria and was affecting my heart.  My body was hammered with strong antibiotics, anti-malarials and the seasons of ‘herxing’ began.  A Herxheimer reaction is a flare of symptoms caused by a release of endotoxins when dead microbes flood your system and let me tell you, it sucks.  Just when you think you couldn’t possibly be any sicker or be any more miserable, a herx will deliver you to a firey pit and you just have to let the heat burn you.  hipsurgeryAs Winston Churchill said, “When you are going through hell, keep going.”  Perhaps Mr. Churchill had Lyme Disease.

The way I handled the severity of my situation was by strategizing.  I researched and gathered as much quantified information as possible.  I scoured the internet, read book after book and reached out to other patients for guidance.  Once in the arena of Lyme Literate Medical Doctors, I approached every appointment as a serious business meeting.  Even though I could barely sit-up in a chair, I was still the CEO of My Health, Inc. and I digged deep to find strength for these consults.  I came prepared with a comprehensive  list of my current symptoms and always had questions about new treatments I was discovering.  I questioned everything and began to learn this insidious disease inside and out.  I made friends in the IV rooms, swapping invaluable information, consolation and support.  While I focused on the next step to take, my loyal husband broke his back to care for me and pay for the exorbitant medical costs.  Without him I surely would have died. Chronic Lyme Disease is not recognized by the CDC and therefore not covered by insurance. Insert Scream Here.  So there was the stress of Lyme’s far reaches into my body and then there was the stress of managing it, paying for it and trying to explain it.  Money and friends disappeared like mists and havoc was wrought in our lives.  I found myself between yet another rock and a hard place and more days than I care to admit, I googled suicide.  I thought that maybe this lifetime just wasn’t going to work out for me.  I know what a bright light I am and how much I have to offer the world so a tragic ending like this scared the crap out of me yet I had my sister on the other side and a belief in Heaven so it seemed a logical way to end my suffering.

As difficult as the physical and practical symptoms of Lyme Disease are what hurt even worse was not being able to create.  An artist to my core, I always turned to my creative imagination as a therapeutic shelter.  Since childhood I have been drawing, painting, writing, designing, singing, dancing, planting, building, styling, photographing and more.  Next to making love there is no greater escape for me.  Every artist needs access to their expressions and keeping me from mine was cutting off my oxygen.

eloise    heatherpainting    selfportrait

So here I was miserable, desperate and without a place to hide.  GOD had allowed a great pruning and there was no place left to turn but to what I couldn’t see.  About a year into this nightmare I came to believe that the Devil was all over me.  But of course.  I was an injured lamb who had been actively seeking GOD, the perfect prey to take down.  One night after a visit to a church for a memorial service I had an epiphany and realized that I had to deny my desire to give up, abandon my thoughts of suicide and commit to fighting no matter how bloody the battle wounds. I began praying again but this time my prayers were different.  Instead of praying silently for a miracle, I now prayed out loud for guidance to find the right doctors and treatments.  I prayed for strength to get through the day and to steady the surgeon’s hands during an operation.  I prayed for financial assistance and relief.  Praying aloud was a scary step for me but I challenged myself and sent a message to the universe that I was staking my ground.  I began to accept that for some reason I had to travel on this agonizing road but that GOD would help me get through it.  I was going through hell and I had to keep going.  Except now I was tuned into the right channel and could feel GOD walking with me.  This changed everything.

beachI created a big visualization board with pictures of the things I needed to manifest in my life.  Images symbolizing digging out of debt, exercising, blogging and slaying the health insurance beast filled my wall.  On days I was strong enough I flexed my culinary muscles and threw down in the kitchen.  I had a myriad of diet restrictions but this just fueled my foodie fire so I discovered new ingredients and creative ways to prepare them.  I finally opened the bible that my mother sent me after my sister died and found much hope and illumination here.  I forced myself to make church once in awhile to strengthen my spiritual muscles and tap into fellowship. GOD was filling my cracks and those once polluted nooks and crannies began to regenerate.  The tide was turning and help started to show up in my life.  In April 2011 an awesome fundraiser was thrown for me allowing access to expensive treatments that had been out of my reach.  The night of the event I hugged over a hundred people and with each embrace when someone asked me how I was I answered, “I’m great. Thank you for being here!”  FLYERfinal2Even though my legs were aching and my adrenals were running on empty, in that moment I was full of so much gratitude that it was the truth.  Repeatedly saying this out loud created a shift that I felt on a cellular level.  Not just money was raised that night.  My spirit was raised too.  I was now a believer that where my words went my life would follow.

I made a decision to maintain a strictly positive focus and this set off a series of life changes.  The television got turned off.  The only channel I wanted to be on was ‘The Healing Channel’ minus the loud commercials or anxiety spiking news.  I had plenty of my own anxiety and didn’t need the media’s or my neighbors.’  If someone was spewing negativity I shut it down or walked away.  Not making myself readily available to receive someone else’s junk was another new way of BE-ing that I embraced and this freed up much needed space for healing.  I discovered the scientific benefits of Earthing and spent time with my toes in the sand.  I stopped taking antibiotics and switched to powerful herbs.  I started meditating and working with healers who speak the language of ethereal energy.  When my body was strong enough I re-entered the house music scene, showing up to clubs solo just to burn-the-floor and ask GOD to heal me even more.  I pushed myself out of my comfort zone and danced blindfolded at a Dance of Liberation event, allowing for body movement that feels rather than looks good.  water2Instinct lead me to open up my chest with big shoulder rolls and I ended up on the floor releasing long held tears from the heart space I had created.  When Halloween came around I set an intention to heal the wounds of my sisters passing, which by falling on Oct. 28th had robbed me of the creative spirit this holiday brings.  Crystal was born under the sign of Cancer so I dressed up as her element, Water.  I danced three nights in a row, praying on the dance floor and connecting with her.  I entered November washed of my deepest pangs of grief.  Feeling lighter.  Feeling healed.  Praising GOD.

Eventually it was determined that along with Lyme I had high levels of heavy metals in my body.  My endocrine system had gone haywire from long term exposure and I developed a pronounced sensitivity to chemicals.  Being easily hurt by everything from a scented candle to bus exhaust made me feel angry and marginalized.  I took this aggravation and converted it into a drive to find healthy alternatives and create safe spaces.  I researched like crazy, sourcing chemical-free products and design materials that didn’t off-gas, amassing oodles of innovative solutions for pure living and work environments.  I decided that when I was back on my feet I would fuse two great passions, health and design, by launching Safe and Sound Design, a service specializing in non-toxic interiors.  livroomIt seemed everywhere I went I ended up having a conversation about Lyme Disease or Sick Building Syndrome and it is a natural pleasure for me to help people and share my knowledge so I registered beyondlyme.com with plans to assist those navigating through this overwhelming abyss.  I didn’t choose to work in the arena of health, the universe chose it for me and it became clear that I was meant to blaze forward in this vein.  I imagined all the things I could do with my real life experience and clung to the future.  I was getting through today by reaching for tomorrow.

When it became clear how sick my beloved house was making me, I sold it.  When I realized my marriage was holding me back, I left it.  I got rid of all of my belongings, threw myself out of the nest and went out on my own to clear the decks and see what else I needed to see.  This bold jump set off a great tectonic shift and the meat of what I really needed to heal was revealed.  I was free-falling through my own scary sky and there was no stopping it.  Once left alone, my harsh inner voices sounded so loud.  Inner children that never received what they needed pestered me for attention and got in my way.  GOD revealed my co-dependent patterns with a glaring light and despite how uncomfortable this all was, I made a decision to keep looking, to not turn away from my own ugliness or any dis-ease within.  I wasn’t afraid to take my insides apart and spread the psychological machinery out in front of me.  I entered the Al Anon rooms and got honest about my family history and real need for structure.  I learned about the chakras and practiced deep breathing techniques.  altarAn altar went up in my apartment.  Sage and sweetgrass filled the air.  Music came back into my life in a super-charged way and I could feel the sounds raising my vibration.  I studied the arch angels and tapped into their specific powers that are there to help us.  I started running again and reconnected with the long dormant athlete inside.  I blew the self lowered lid off of my personal power to heal and began chanting.  Everyday I say out loud, “I am healed.  I am light” and then name what I am letting go of.  I realized I have to restore every layer of my being.  No facet of this human life can be left unattended.  My body, mind, heart, emotions, psyche and spirit all need fresh air breathed into them and so I honor this.

392176_10150448926589328_694770132_nI continue to work everyday to heal Lyme Disease and all of its complications.  My body still suffers great pain and relapses continue to challenge my spirit and productivity.  I have learned to not get discouraged or panic but to look closely for the message.  What do I need to tweak in my regimen?  Where are my thoughts deceiving me?  What did I eat that I shouldn’t have?  I accept that this recovery is a long winding road and for every two steps forward there will be a step back.  The key is to then take three steps forward.  To hold onto the memory off the light when the darkness creeps in.  To infuse as much love and art along the way.  To take good care of Heather and never give up.  Now I sing when I walk down the street without shame or hesitation and pray throughout the day.  I pick up my camera and capture fresh beauty in the world.  A regular yoga practice has finally made its way into my life and I enjoy every down dog and chaturanga.  Paying close attention to this precious body of mine and treating it with patience and kindness has become the name of my game so I do my best to be mindful of my thoughts and how they affect my health.  I eat very close to a 100% organic diet and cook every single day.  I am a firm believer that Food is Everything and that Nothing Tastes Better than Feeling Good.  You can quote me on that.  I have learned oodles about how to harness food and not be a slave to it and I am so excited to share my ‘healthy foodie-isms’ with the world.

There is no doubt in my mind that physical dis-ease is a gift.  It begins a journey of precious healing.  How far you go, how much clutter you clean off the desk, is up to you.  As I wrote in my poem The Sea, “A broken body pushes you.  Forces you to look.  The gate opens to the healing pastures.  If you start and stop with the physical manifestations you may miss the greatest gift.  The emotional-psychological scrubbing that becomes the crescendo.  The third act that completes the story… When your world becomes stripped away of almost everything that you thought made it so, you are right where you are supposed to be. Now listen.  There are doors cracking open.”

heatherwithcameracrop