I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

Friday
Aug172018

Tired, Just Tired of Lyme

I'm tired.

I'm tired of the world not understanding chronic Lyme, of doctors disrespecting the other doctors who treat it, of doctors saying it doesn't exist. 

I'm tired of family and friends questioning the amount of money we've "thrown" at treatments that haven't worked or maybe worked only for a short amount of time.

I'm tired of family giving up on us. I'm tired of watching every word I say. I'm tired of not having much to think about besides chronic illness some days. I'm tired of trying to convince someone else that chronic Lyme exists. I'm tired of arguing about disease and transmission.

I'm tired of there being no damn cure. Of there being no good testing. Of doctors with conflicts of interest or simple ignorance arguing against the evidence of the persistence of Lyme. I'm tired.

I'm tired of relapsing, of not always being filled up with energy. I'm tired of not being 28 anymore, with my 28-year old's high energy.

I'm tired of the financial struggle; hell, we could've had a zillion vacations or purchased a summer home in Tahiti instead of dealing with this.

I'm tired of the emotional struggle, of seeing kids fight before they're even fully grown, while their peers race through the normal hurdles of life. 

I'm tired of people you thought were supportive suddenly questioning everything you believe.

I'm tired of pretending for moments at a time that all is calm and OK when it won't be in five minutes.

I'm tired of putting on that face, you know the one that you wear when you're at the grocery store and someone asks how you're doing..."Oh, fine, how are you?" I'm tired of wearing that face even for family members. And I'm tired of not spilling all to family and close friends so that they have a true picture of what is going on, but if I were to spill it all, there would be judgments. 

I'm so tired of being judged. And we are judged. Everyone who is chronically ill is judged. It's yet another prejudice that underlies our culture. We become the "them." 

I'm tired of having a happy day only to return to grief. I'm tired of coming home. I'm tired of struggling for years.

I'm tired of asshat doctors saying that PANS doesn't exist or it can't happen to kids who have autism or it must have a sudden onset or must only be caused by strep. Even if these issues don't pertain to my kids, I'm tired of them because they affect people I hold dear to me, other parents who are TIRED of this.

I'm tired of being a pioneer. I'm tired of feeling alone and forgotten.

I'm tired of giving up my dreams. I'm tired of looking older and losing precious time with my babies. I'm tired of missing out on normal childhood fun. 

I'm tired of explaining myself. I'm tired of forgetting vocabulary and I'm tired of feeling cornered when attacked and unable to come up with the correct language and ideas.

I'm tired of not being there for friends as much as I would like to be. I'm tired.

I'm tired of fearing that there is worse. I'm tired of fighting for treatments, trying to figure out the right doctors. I'm tired of the huge expenses and the fees that some doctors demand. I'm tired of not going to all the right doctors anymore because we're not billionaires.

I'm tired of being sad, of questioning the meaning of life, the significance of our existence and beliefs. I'm tired of praying and wishing for dreams that don't come true.

I'm tired. I'm grateful.

I'm grateful for the warriors who continue to find the words and fight. 

I'm grateful for the people who add to the list of studies done to chronicle chronic Lyme.

I'm grateful for the actors and athletes and politicians who took a bite out of a lime to increase Lyme Disease awareness in the #LymeDiseaseChallenge. I'm grateful for Yolanda Foster for kicking it into gear after 5 of us moms across the country launched it after months of intense work and planning. I'm grateful that it continues, several years later although I'm no longer as active with it...because I'm tired.

I'm grateful for the scientists who continue to study the persistence of Lyme so that they can create a cure.

I'm grateful for the doctors who put their work on the line so they can treat it, for the doctors who look beyond an erroneous blood test to diagnose Lyme, to the doctors who struggle to see the big picture.

I'm grateful for friends who feel the same way and tell me so.

I"m grateful for all the writers and advocates in our community who just don't quit. I'm grateful for people who feel it's their life's work to make change. 

I'm grateful for small moments of tranquility and large moments filled with laughter. 

I'm grateful for wine and chocolate and bicycling and yoga. I'm grateful for happy dogs, beautiful sunsets, music and books that let me escape.

I'm grateful for the reaching hands and words and love from people I've met often or haven't even met in person.

I'm grateful for doctors who say that everything will eventually be OK.

I'm grateful for my own personal need to make change so that others don't endure as we have done.

But I'm tired too, and at times, I just need to stop. And I am tired of feeling tired.

 

Friday
Jul272018

The Sunny Side of the Street

There exists two sides of the street: the sun-bright, well-walked one with colorful storefronts and restaurants from which music spills through open windows to umbrella-covered tables. The sidewalks have well-designated lines in the shining concrete so that you can easily step from one block to the next if that is your thing. All is swept clean daily. Doors are open; you are welcome everywhere, and everywhere, people greet you as an old friend.

And then there's the other side--shaded, hushed--with dark alleys leading deeper into shadows. Although there is some pedestrian traffic, this side is not popular; after all, solemn offices and a few businesses reside in the upper floors while the stores below offer bongs and cheap tchotchkes or sport "Vacancy" signs. 

Just one crosswalk leads from the sunny side to the shaded side and it's one way only; all who find themselves on the shady side have either wandered away without purpose or been shoved out into traffic and forced to skirt danger until reaching the parallel sidewalk. 

While it takes but seconds to switch from the sunny side to the shaded side, it's a tedious, tortuous return. If you do manage to pass back to the merriment and vivacity of the first side, sad, frustrating, angry memories from the shady side will color each new experience. You will notice for the first time the plastic flowers embellishing the restaurants' decors, the too-sweet scents of passing women, the small crack in the corner of a window that is mostly hidden by a curtain.

Whereas in the sunny side, you had not a care in the world aside from purchasing the perfect gift for X or those new sneakers you just HAD to have, on the shady side, you cradle worries larger than yourself. Survival no longer means deciding between two trendy restaurants for your lunch. The world is racing at you from every direction in 3D and it's cruel. You must negotiate the obstacles coming from every direction and you fight against the ever-strong riptide that threatens to pull you under. You have left behind family, friends, aquaintances, to focus on saving yourself, or perhaps, as is most often the case, they have left you. 

Marooned on the shady side, you mourn the loss of gaiety, spontaneity, frivolity. After you sit for the required time allotted for grief, you notice others around you; they suffer as well, so you reach out, try to help. Aiding others somehow brings you comfort. For moments of time, you forget your woes. You find common bonds with fellow shade-prisoners; they embrace you as family might. You realize that this side is much more populated than you ever knew; in fact, most of the world is hidden here, in the alleys that were once invisible to you. 

Can you ever return to the light or are you destined to steep in the sadness of shade? You realize that you took for granted the light and in doing so, refrained from noticing the shade; even if you studied the shady side as an intellectual exercise, you could not have known it as you now do.

Was it something you did that caused you to end up here? Was it Karma, Fate, just pure bad fortune? Is there NOTHING you can do to return?

You are given glimpses of the sunny side, maybe in your dreams or at a small space between too-close skyscrapers that lets in light, and you wish to reside there once more. Yet the shade has become a permanent tenant in your heart, your being, and will always be with you going forward, wherever you venture.

Once you cross away from the sunny side of the street, everything shifts like a kaleidoscope. You must learn to live with the underlying sadness and focus on your new land and its people, for you may leave the shade but it will never leave you.

Saturday
Jul142018

Bicycling as a Metaphor

As I passed a man on the bike path the other day, I sang out, "On your left" but added, "But probably not for long as I'll fatigue and you'll pass me."

I did lose speed. And he did pass me. And all was OK in the universe.

Only because I made the disclaimer.

Just a few weeks ago I passed four young men and there was no way I would let them catch up to me, only to pass me again, especially after I heard one of them say to another, "Don't get beat by a girl."

But then, days after, I relapsed and have been fighting to get back ever since.

Now I awake in the morning and lounge in bed for half an hour before stumbling my way to the bathroom, ankles twinging. Fatigue wraps itself around me like a lead X-ray apron. Electricity zaps my legs. 

Then, I finally had my reprieve, my first good ride in weeks. As a I passed a woman in bicycling gear, I wondered: how many miles had she already been riding? Was she healthy? While we rode the same bicycle path, we had different starting and ending points, different journeys, different stories.

Years ago, I would not have asked these questions when passing another cyclist. Years ago, I envied a friend for having the perfect body, the perfect job, the perfect brain, the perfect money. Only later did I discover that she held the same insecurities as I, perhaps even moreso. My godmother's wise words of, "Don't compare your insides to someone else's outsides" gain more significance daily.

Once, it was about winning. Winning my own private race, that is. Beating my own previous time. Pushing myself to my maximum. Adding just one more, no, five more miles. 

Today it's about doing. It's about showing up. It's about my intension to do a 30 mile ride this summer. It's about hoping that I'll be able to achieve my goal of a 75 mile ride when I'm 75 years old. I don't know what I'll endure in the years leading to 75. I don't yet know all the steps I will take to ensure that I will bike my age.

In life, we don't know how far someone has come, or what ordeals they're facing. So maybe I'm super fast in my first five miles but slow after. Maybe someone else has already ridden 45 miles or has just recovered from a heart attack and is back on the bicycle. Maybe I'm the one who cannot cycle the way I did just a month ago because my chronic Lyme has roared back to life after being chained to the cellar for a year. Maybe that guy bicycling 5 miles just accomplished something incredible.

Not riding rapidly can have benefits. Last week, I clicked out of my pedals to take a picture of an undaunted deer that happily munched leaves on the side of the path. I smelled sun-warmed plants and absorbed the light from sun-starry waters I passed.

Today, I came to an obstacle: a tree had fallen across the path. Two other cyclists stopped. One man joked about limb-ing under it. A woman asked if we could move it. The three of us tried but it was heavy and still grounded on one side, so i picked up my bicycle and carried it over. 

Just another obstacle in life, easily surmounted in the whole scheme of things. Why worry about one fallen tree blocking the path when I can easily climb over?

When I returned, it was gone. Someone, perhaps the guys working in trucks to keep the path maintained, had removed it. And I barely noticed until the area was behind me. 

Sometimes I think I need to be grateful that I have two hands that work, that I can breathe through my nose without suffering from a cold. I need to be grateful for all of the things I take for granted until I get sick or hurt. When I have a bad cold, my nose/head/sinuses become the largest part of my body. I need to be grateful, for today, that they are relegated to their proper places.

When riding downhill, I have two choices: shift and tackle the hill, watching my speed pick up. Or coast, relishing the downtime (pun intended.) 

It's summer and I'm off from teaching. Do I relax during my downtime? Catch up on my sleep? Or do I use this time to complete all the projects I have not had time to do all year? Work on my book? Play my guitar? Re-do the bathroom?

Do I even have a choice? On days like today, despite the sun glowing goldenly, I feel the heaviness of headaches and lethargy, as well as the angst of not accomplishing anything worthwhile. I haven't even taken the puppy out.

But I'm here, remembering the glorious rides, that wonderful feeling of having strength in my legs, the lack of pain in my back and feet when I rode. I tell myself I'll revel in that again as long as I persevere and believe.

Life. It's about flexing those muscles and pumping uphill or trying to catch as much speed on the downhills or coasting....

Saturday
May192018

Lyme Connection Conference May 17, 2018

If you missed the Lyme Connection conference this year, read on for some notes. Hopefully, all speeches will be available online soon because they were filled with important information, wisdom and hope. I was fortunate to attend and also, with advocate friends, to again run the Lyme Disease Challenge table where we encouraged people to "Take a Bite Out of Lyme." 

Note that any errors or misunderstandings with the following information are mine. 

Mr. Lew Leone, vice president and general manager of WNYW-FOX 5 TV, was honored with the Courage in Journalism Award. He spoke about how Lyme has affected his wife and went on to thank Yolanda Hadid for she "took Lyme awareness to the next level." Fox News produced the Emmy-award winning Lyme and Reason: The Cause and Consequences of Lyme Disease and a follow up, Lyme Disease and the Voice of Change. 

Dr. Neil Spector than spoke via video. He is a top oncologist/researcher at Duke University School of Medicine. His speech about his journey from doctor to undiagnosed Lyme patient who nearly lost his life to this disease was moving and insightful; you can purchase his book Gone in a Heartbeart. He is now an integral voice for the Lyme community.

Ms. Dana Parish, award winning Sony singer-songwriter, advocate and writer, who has grappled with Lyme herself, took the podium. She stated that a few years ago, she happily attended a wedding and over the course of one weekend and a tick bite, her life changed forever. You can read more of her story here. Dana Parish has published several articles with the Huffington Post and has garnered many accolades for her advocacy work.

Despite suddenly having fatigue and insomnia, suicidal depression and hallucinations, she was "entirely failed and dismissed by mainstream medicine." Dana Parish said, "If you think you have the summer flu, it's probably Lyme." 

Some words of wisdom:

-Three weeks of Doxy fails 61% of the time according to one study and over 30% of the time according to another. That's a high statistic.

-Doctors only see what they know. They don't know how to connect the dots.

-There is always a reason when you body goes haywire.

-Don't trust anybody but a Lyme specialist when it comes to Lyme.

-Lyme and Bartonella are chronic stealth infections.

 

Dr. Steven Phillips, renowned doctor and researcher, was the final speaker. He spoke about treating many patients, even his own father who couldn't get proper medical help for Lyme. Dr. Phillips is currently writing a book with Ms. Parish.

-Lyme and co-infections create "a soup of infections."

-2/3 of people diagnosed with Lyme have Bartonella

-Bartonella is tightly linked to a range of autoimmune conditions

-it's pretty common to have asymptomatic Lyme in your body

-IV antibiotics are not superior to oral antibiotics; some patients respond better one way or the other; IV antibiotics do not necessarily circumvent the gut; IV rocephin gets excreted through the GI tract

-Dr. Phillips uses pulsing in his practice; the bacteria tends to hide/go dormant so pulsing kills them when they re-emerge

-You can't kill Lyme in the test tube with doxycycline or rocephin, amoxicillan or ceftin

-"Post Lyme Syndrome" is an 'idiotic fabrication" according to Dr. Phillips. You would never come up with a term like this for cancer or HIV; it's a slap in the face.

-Herxheimer's reacions can last a very long time, months even.

-"Blebbing" also occurs. Blebs are intrinsic to autoimmune illness. Spirochetes release blebs into tissues. (Editor note: this is the first time I ever heard about blebs; please comment if you have more information!)

-Psoriasis can respond well to Bactrim

-There is no definitive cure for Bartonella

-Both Lyme and Bartonella will turn off the immune response to infection (anergy)

-Diflucan can kill Lyme and is an anti-fungal

-Lyme doctors don't take insurance because they spend much more than the covered 10 minutes with a patient, often 1-1/2 to 2-1/2 hours for the initial visit and between 1/2 - 1 hour for follow-up visits. Insurance will not cover this.

-Sleep disorder is a neurological symptom

-329,000 NEW cases a year of Lyme in the USA at minimum; 20% of these become chronic

-Lyme is prevalent in Scandanavia yet there are nearly no treating doctors there

-Eating Paleo can get the pain down in some people (it helped Dana Parish) but according to Dr. Phillips doesn't help everyone

-Bad herx? Stop antibiotics, some people use Epsom salt baths, burbur/pinella

-DNA tests, PCRs--some labs use a target that doesn't get expressed with Lyme; testing for Lyme is often erroneous; there are many false negative results

-IVIG can benefit PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome)

-Dr. Phillips has seen some adult versions of PANS (and therefore maybe we need to get rid of the "P" which stands for Pediatric.)

-Flagyll is carcinogenic

-Alinia, on the other hand, does not cause cancer

-Bartonella is associated with psoriasis

-Infrared sauna can help with psoriasis

-Some veterinarians have concerns that the Lyme vaccine can cause kidney failure in dogs

 

Written across Mr. Leone's slide was the quote, "From caring comes courage."--Lao Tzu.

Mr Lew Leone, Dr. Neil Spector, Ms. Dana Parish and Dr. Steven Phillips have all had a personal relationship with this disease. All four have taken the knowledge and experience they gained and are courageously working to increase awareness, introduce alternative treatments and support others. All four are making change for those who yet cannot. 

Saturday
Mar102018

On Women's HERstory Month

March is Women's History (HER story) Month and it's time to celebrate the amazing mothers who work tirelessly to raise healthy, happy children. It's time to celebrate the mothers--the Katies, the Nancys/Tricias/ Gayles, the Anitas/ Gabriellas/ Emilys/Christines/ Jaimes and Beths, the Libbys/ Julies/Giulias, the Barbaras, the Gayles/ Melissas/ Valeries and Erins...the moms who aren't (as far as I know) famous, but who fastidiously love their children and do anything needed to care for them, despite overwhelming obstacles.

But I want more. 

Each year, for Women's HERstory month, a former and beloved history teacher, now retired, returns to my classroom to share his story of an ancestor who was an abolitionist. Each year, for many years now, I have asked my students to write a story of a female ancestor of their own--someone for whom books were not written, someone who was most likely a mother, someone whose story might eventually evaporate but for the telling.

My students need to interview living family members in order to find these stories, and in doing so, they learn not only about great grandmothers or great aunts but history. They learn about Irish ancestors escaping potato famines, about Holocaust survivors, about first generations that were born out of slavery. They learn about women who went to college when few others did, about women who raised seven children single-handedly, about poverty, prejudice, survival. They learn about the character traits that are still remembered--kindness, perseverance, stubbornness, industriousness--character traits that might be passed down to future generations, whether those generations be born to them or adopted. 

I want to be remembered, and not just for being a mom. Or a mom who fought for kids' medical health. Or a mom who fought for Lyme treatments while lying in bed, fatigued from Lyme. Not that that isn't enough, but I want more. At one time, I would have been happy to be remembered for singing. But I had aimed for a different path. I would love to be remembered for my writing. Most importantly, I would like to be remembered for bringing positive change to our world. 

But today, I am tired. I'm physically fatigued. I'm worn down. I joked with a colleague a few weeks ago that if I did not return from February break, I could be found somewhere in Italy.... maybe studying music. I know I'm fighting a cold. And the cold has caused some brain fog. All setbacks perturb me. I have so many goals I want need to accomplish.

Why is it so important for me to accomplish more than parenthood? Why is it integral that I am remembered? What is our purpose here in life? Is it to achieve happiness? To learn to accept all that we cannot change or to fight for the changes that must be made? Is it to plant a tree, have a child, write a book? Is it to make the place better for others?

Where do we current mothers fit into all of this? Will my children have children or will my great grandchildren someday be researching me? And if so, what could they learn? That I dabbled in musical theater, kept returning to college and racking up degrees, (yet still suffered financially)? That I fought for PANS legislation and Lyme treatments? Will they read that I published a book sometime in the 21st century (date unknown)? Will they read that I made great changes? Will my name persist past my life? Will my children grow old and carry with them good memories of me?

Or will I slowly disappear, much as my own great, great grandmothers have done? My great grandmother Nadia (renamed Nettie) came over from Russia, lost her thumbnail in a NYC sewing factory, lost her firstborn to a hole in her heart and nearly lost her son to polio despite the fact that my great grandfather was a doctor. My great grandmother was also mother to my grandmother, whom I loved but who will not be remembered for many generations. I know nothing about Nadia's mother or Louis's mother or my Great Grandmother Rose's mother, despite their accomplishments, despite the obstacles and suffering they had to surmount. Their names and their stories are now lost to history. 

Throughout my teens and twenties, I felt desperate to know why I was alive, why I was here. I knew I had a meaning in life but it was just a whisper of importance that evaded me. When I found the stage and could make people laugh and cry, I thought that part of my meaning was involved with musical theater. I believed that writing was linked to my meaning but had no direction yet. Ironically, I majored in finance. 

Once I had a family, that urge to find meaning calmed somewhat, until I was thrust into another world altogether. This new world would ultimately (hopefully) make me a more understanding and compassionate person, one that would lead to deeper connections with others. If I had not had setbacks that brought my world so much narrower, would it have grown wider? Would I know and care so very much for the same people? 

I want more.

I want more fun, more freedom, more finances. I want to make more changes, be able to volunteer at a conference two days in a row without growing fatigued. I want to be able to be two places at the same time! I want to spend quality time with my husband, my daughter, my son, my friends. I want to learn ukulele and play my guitar and write my novel and ride my bicycle and do yoga and save the world, but I have neither time enough nor sufficient energy. I feel fractured into many different directions, which is nothing new as I have always had many passions. I just cannot do it all.

And while I ponder my story, while I try to WRITE my story, I also try to shape that of my own daughter. She has strengths I never had at her age. She has personality and gifts that are blooming. She has the potential to make so many positive changes to our world. She is a gift to me and she is also one of my gifts to the world.

"Please Gd, please, don't let me be normal!" --Luisa from The Fantasticks