Long Island Lyme Talks and the ‘Time of My Life’

My Lyme talks and book readings on Long Island recently were a “homecoming” of sorts for me, as I was raised on the gracious shores of this often teeming stretch of land, now a New York City commuter corridor.

As a child in the ’60’s, the woodsy North Shore, “Great Gatsby” area we lived in, was laced with bridle paths, sleeping hidden ponds and heaving old mansions built in the roaring twenties.  I whiled my nomadic hours building pinecone castles under the mountain laurel dens we played in and climbing into the upper limbs of a favorite tree, a grand and proud copper beech.  With the roaring surf and powdery sand of Jones Beach in close reach, we neighborhood kids spent endless days bodysurfing and skimboarding in reckless abandon.  As summer peaked, off my family would go far spans of time to Fire Island or South Hampton, basking in nonchalant freedoms, our bicycles and tennis rackets constant companions.

These were carefree and wholesome years I recall with true fondness.  Long Island was developing quickly, yet my tomboy youth, my band of friends and in turn our studious years in a Quaker high school knitted me in strong affection to the true beauty of Long Island’s old whaling villages and Dutch settlers farmsteads.  Exploring hidden root cellars, sailing on Long Island Sound and riding horseback through the shadowy woods built sturdy adventure into my limbs.  And yes, I pulled many ticks off of my body and certainly our pets. By the time I moved North in 1991 every dog in our neighborhood had been infected with Lyme. We knew the illness was present, but never did we fathom the treachery.

Forty years later, we now know Long Island is severely infested with Lyme disease and the co-infections ticks carry.  Blessedly, I never fell ill back in those days, but now thousands are suffering on the beachy shores and even in well built suburbia.  The East End of Long Island; the North fork; Shelter Island, the Hamptons and Montauk sit in the Lyme cross-hairs.

Back in the 1980’s and 90’s some serious research was underway via Dr. Alan MacDonald at South Hampton hospital and at SUNY Stoneybrook labs regarding Lyme.  The arthritic and neurological chronic forms of the illness were recognized and being studied.  Stoneybrook suprisingly  recently closed their excellent Lyme lab and Dr. MacDonald and the renowned Lyme literate physician, Dr. Joseph Burranscano are gone.  Meanwhile, Long Island still suffers a huge epidemic, as the entire East coast does really.

August 17, brought me to the Shelter Island Library, with a lovely turn-out of Lyme concerned folks.  Thank you Robbie Vorhaus and Denise DiPaulo for helping create this event.  We all learned a great deal from one another, as I shared “Out of the Woods” and my experience.

August 18, Canio’s Bookstore, Sag Harbor hosted a bookreading and talk.  We were jam packed inside this quaint store, all eyes and ears soaking in the Lyme information.  Some seriously disturbing accounts of misdiagnosed Lyme, chronic illness and even deaths due to the advanced forms were shared.  Lyme can reek horrid damage; body, mind, and spirit.

My hope is that the long overdue money and research can FINALLY begin to unravel the web of Lyme’s “lock and key” connection to so many suspicious links to auto-immune disease- MS, Parkinson’s, ALS, Alzheimer’s, RA show such commonalities!

Meanwhile, my Long Island visit was rich for me on many levels.  Besides visiting some of my old haunts, family home included, I got to swim at the glorious Ditch Plains Beach in Montauk and savor a sunset sail on the fluttering evening breeze.  Especially heartwarming was that four childhood friends came to my book events, giving my return a true hoist of cheer!

Our dinners together and post event celebrating at Page in Sag Harbor was a night to remember, forever.  Twelve of us ensemble moseyed off to dinner, the summer sky peppered with stars.  After four days of traveling, work, connecting with so many Lyme afflicted and doctors, and tasting the roots of past, a silky wash of emotions ran through me – “This is the time of your life,” I heard deep within.

It was a knowing.  The meaning of my work as an author, a healer, survivor and now a Lyme literate educator moving through the world in such a way, struck a palpable chord in my soul.  The chatter of familiar voices surrounding me, their care and love, the magnitude of the Lyme epidemic was all very real and ripe  Somehow it appears, my decades of living, learning, reaching, and healing are all coming together.  Long Island “brought it home” to me!

I feel proud and honored to be living now and sharing my words with others.  How remarkable my journey has been.  Lyme stripped me of everything I cherished.  But, I worked hard to recover, and now my internal awareness and hard earned rewards are enduring.

I move forward, more Lyme talks pending- Vermont this week, and Rhode Island in September.  Connecticut follows in October.

“This is the time of my life.”  I aim to offer hope and resources to those in need.  Thank you all for caring.  We will change the future of Lyme!

With Blessings.

(Katina on the Shelter Island ferry en route to her presentation.)

2 thoughts on “Long Island Lyme Talks and the ‘Time of My Life’

  1. Love your ‘picturesque’ writing. I’ve not had the privelage of heariing you speak (currently living in Australia right now and will be moving stateside in 3 months) but I would love to know how you transitioned back to working out, or getting exercise and how you manage that. That seems to be one bridge I haven’t been able to cross yet and I just wonder – if you have been able to add all the activities pre-Lyme back into your post-Lyme life and your journey in doing so.

    Thanks 🙂

    1. Hi and thank you for your note. It took a long slow process to rebuild exercise into my life after being bedridden for 2 solid yrs. I gained close to 30 pounds and lost all my muscle mass. At first my doctor forbade me from anything that would elevate my blood pressure and tax my body more. so it was gentle lying down yoga, then sitting and standing yoga. After about 1 year we added in walking. half mile was my first goal, took few weeks to get there. managed a mile at about 3 months. Then we started with some easy swimming, not exertion but just to help circulation and lymphatic system. At year 2 we added in some mild weight training….it hurt my joints so we had to go light weights. I started swimming with gusto too.

      Now, 7 years later I swim a mile daily in the open water!! I can bicycle, hike, dance and do yoga, pilates, kayak. I cant run though and tennis and zumba have been too much, but some of that relates to 5 fused vertebrae in my spine from a 20yr old violent horseback accident and broken back. I have shed half the weight and am eager to finally drop the remaining 15, but food became an outlet of pleasure when so tragically ill, so ‘giving up’ the one ‘feel good’ piece of my life for those long years has been a tricky dance. I am doing some hypnotherapy for that new programing now.

      Take it easy, but do try to work on stretching and circulation. A tiny walk even for 10 min a day is worth it. In all honesty, in the beginning, I couldn’t walk across a room without help. It tool leaning on someone else’s arm to help me start my first steps to recovery and reclaiming exercise. You can do it. even an at home yoga or tai chi dvd is an idea. Though just do 10 min or so in the beginning. small achievement adds up over time!!!

      cheers!

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