Fighting Back After Chronic Illness Knock Out

Apologies to my loyal readers, friends and family for being out of touch, off line, disconnected. Estranged from everyone, I shut down, closed off my heart and buried hope.

When you suffer from chronic illness, you exist in a parallel universe of pain. A pain that is magnified when so misunderstood by the medical community like in chronic fatigue syndrome, fibromyalgia, environmental illness, Lyme disease and other conditions that are hard to diagnose and even harder to treat.

Awaiting answers we muddle along until flare ups knock us out again and again.

The earth tilts under my feet. My eyes roll back in my head. Shooting pains fire off like missiles in my muscles. Ants crawl under my skin. My stomach cramps. My joints throb. My throat aches. My lungs burn. My vision blurs. My head pounds.

My brain, an overinflated balloon, presses against my skull, like it will burst.

An old athlete, I can cope with physical pain, but enduring the tricks of my mind becomes unbearable. I forget what I just said. Phone numbers, street addresses, friends’ names elude me.

As bad bugs hijack my brain, I stare ahead like a deer in headlights unable to process thoughts. My tongue twists on the phrases that spew out sometimes in French, sometimes English. I repeat myself like a silly parrot, jumbling sentences, confusing words.

Trapped in bed, the walls close in. I reach for my survival kit — a Kindle, laptop, notebook, cell phone, water bottle. I calm my racing heart by counting blessings — family to cherish, food on the table, roof overhead.

Like a human guinea pig, I sign on for another drug trial, relying on an equally desperate Facebook group of strangers, who battle the same misunderstood multi-system inflammatory disease.

When I can muster enough energy to go out, friends will say, « You don’t look sick, » and assume I am cured. All the while the invisible body snatchers eat away at my cells turning my brain to spaghetti, my muscles to mush.

On my worst days I enter the twilight zone of semi-consciousness suspended between life and death.

Don’t let me give up.

Hang on. Another second. Another minute. Another hour. A day. A week. A month. A year. A decade. A lifetime.

Trapped in a body that doesn’t work right, I know I am not alone. Millions suffer from invisible diseases. Do not forsake us. We are doing the best we can. When we say we are too tired/sick/weak to go out, prepare dinner, entertain guests, we are not making up excuses. We aren’t malingers; we are champions battling invisible enemies.

Commiserate with us.
Listen.
Let us repeat the same broken record of despair. Then repeat the same pep talk you gave last time.
During flare ups, we lose perspective. Remind us of happier times when we were able to participate.
Make dinner. We won’t be hungry, but coax us to the table.
Send emails, text messages or make calls. Voices uplift.
Hold us while we cry.

Click here, listen and be inspired

We are a society of doers until we are sidelined by injury or illness. Then we feel worthless, like dead weight, like burdens.

Remind us always of how much we are loved. And how maybe, just maybe, we inspire you to endure tough times because you look at us and know how hard we are trying.

Real warriors keep fighting.

Day by day.

Minute by minute.

Word by word.

I am back writing and I missed you.

Floating My Way to Nirvana

New experiences slow aging, so for my birthday I tried to float my way to nirvana. As a gift, my Frenchman offered me a Flotation Therapy session. I left my comfort zone, overcame claustrophobia and closed myself in a flotation tank for a total mind and body experience.

Flotation therapy dates back to 1954 when Dr. John Lilly, a physician and psychoanalyst, studied altered states of consciousness, brainwaves and the effect of sensory deprivation. His research led to the development of a flotation device creating a weightlessness state, void of sensory stimulation, which can lead one to a state of mindfulness.

At the Surface Center in Lausanne Switzerland, entering the tank felt like stepping into a space ship. When I lay out in a bath of water heated to skin temperature of 94-95 degrees F and highly concentrated with (800 lbs.) Epsom salt to remove gravity, I felt as weightless as an astronaut in outer space.

Did you know about 90% of your brain’s activity focuses on calculating where gravity is and in which direction to enable you to move without falling over?

Without the necessity of maintaining posture, your mind frees from the physical world, creating a state of sensory relaxation.

Later Ohio State University research showed flotation improved creativity in jazz musicians. The therapy is currently used by elite athletes, like Stephen Curry, to enhance performance.

Hey, if it worked for basketball’s “Baby-Faced Assassin”, it could work for me.

So I floated and waited to reach nirvana.

Nothing happened.

Once I realized I could open the door, I overcame my anxiety of being entombed in a pod the size of a double-wide coffin. Starting from my crooked toes, I visualized each bone and body part being released from every injury and accident. Then, I repeated the process imagining killing off bacteria, viruses and germs plaguing my health.

Therapy accelerates lactic acid removal, lymphatic tissue flow and reduces the blood pressure, maximizing blood flow. In theory in this state, endorphins are released reducing pain but instead of euphoria, my spine still felt crooked. Even as I visualized symmetry, my posture still felt out of whack with my head twisted one way and my shoulder and hip the other way.

“Your head falls back weightlessly,” the instructor explained beforehand, “so prop your head with hands.”

In spite of my deep breathing and mindfulness, after 20 minutes, tightness in my neck and shoulder blades distracted me. Pressure built up in my head and sinuses.

I began to think, enough already.

For a brief period though, I was a hidden pearl floating in a clam-shaped cocoon on the Dead Sea.

When I stepped on land afterwards, a tsunami hit.

My head ached, my brain fogged, my limbs weighed tons and I remained comatose for the rest of the day.

But to be honest, I can reach paradise a whole lot faster floating on Summit Lake.

For more information on where to float, go to http://www.where-to-float.com/

Call Me Crazy – Celebrate Women Changing the World

Call me crazy, but I have always acted outside the box beginning in early childhood, when no one was going to tell me that I couldn’t throw a football, shoot a basket or run a mile. I was born with a feisty, can-do attitude that served me well in the face of naysayers.

In pre Title IX days when girls were shunned from sports, I stood on the sideline of the boys’ pick up basketball games and demanded, “I got next.”

In a time before accolades, scholarships and professional contracts, I trained hard for no tangible reason. In girlhood, I ran miles across the sidewalks of Sterling, defying the whistles, catcalls, and laughter by putting one foot in front of the other.

In college, while my counterparts partied, I shot hoops in a drafty gym to prepare for next season where we endured conditions more grueling than the game driving ourselves through blizzards to play basketball in empty arenas.

After my team in first women’s pro league (WBL) went broke, I had a good cry. Then I got back up, boarded a plane bound for Paris to play ball in the land of wine and cheese, totally ignorant about French language and culture.

At a time when most women stayed near their hometowns and settled down with neighbor boys, I moved to Europe in pursuit of an absurd dream to play professional basketball.

When France closed the door to foreign women players, I rode the rails across the border to Germany and learned another foreign tongue and way of life.

In countries where I knew not a soul, understood not a word, I learned to observe and listen.

I saw how people could be so different in language, custom and tradition, yet still so similar in the need to be loved and accepted for who they are.

When a car accident ended my career abroad, I didn’t pack up and go home. I married a Frenchman and stayed put. I carved my own niche as one of the few female coaches in the European international high school league.

https://www.youtube.com/watch?v=whpJ19RJ4JY

During my career spanning 5 decades across 4 countries, I have worked with girls from around the globe.

I gladly passed on my knowledge to the next generations of female athletes who never doubted their right to play.

Over the years, I witnessed their opportunities grow greater. I delighted in seeing my daughter and nieces play basketball, soccer, rugby, and run marathons. I took pride in watching my former athletes pursue careers as doctors, lawyers, counselors, and teachers.

By going after my silly dream nearly a half century ago, I helped make it easier for every girl to grow up believing her goal was within reach.

Women, daring to stand up and speak out, have made amazing strides in academics, business, law and politics. For so many girls that courage – to do something never done before – was born on playing fields.

I never had the size, talent, or notoriety of our elite athletes of today. I was no Lisa Leslie, Abby Wambach or Serena Williams. I was just a small town girl filled with my own brand of insanity.

But I learned you don’t have to be famous to make a difference. You just have to dream big.

Go ahead call me crazy.

I am kind of proud of the claim.

It’s my birthday. Raise a glass to all women creating change by being crazy enough to believe they can!

Healing Power of Water

As a Pisces, I have always been drawn to water for solace and inspiration, but it wasn’t until I read Blue Minds, Wallace J. Nichols’ bestseller that I realized research proves water contains therapeutic powers. I joke that in my next life I will return as a fish, so I could swim pain free no longer confined in an upright human body with an injured spine.

Fortunately, I have always lived in proximity to water. I grew up in Sterling on the Illinois’ Rock River. I spent summers on a lake in Wisconsin where merely peering out the cabin window slowed my heart rate. Even when I lived in Paris, I could walk down the boulevards of the bustling city to seek refuge by the Seine River. Today in Switzerland on a clear day, I am mesmerized by the site of sailboats gliding across lake Geneva surrounded by the white tipped Alps.

Scientific research confirms something most of us know intuitively. Proximity to water strengthens the positive effects that the environment has on well-being. It releases those feel good endorphins.

As far back as antiquity people have used aqua’s restorative powers in thermal baths for every ailment known to mankind.

After every accident and injury (and I have had more than my fair share) I return to water to heal. Without pressure on my joints, I rehabilitated from sprained ankles and knees and broken body parts – finger, rib, sternum, collarbone – and a twisted, smashed up spine. I swam lap after lap until pain receded.

The head of the PE department of the school where I taught, a Scottish rugby man, submerges in icy Lake Geneva each morning to stay limber taking water therapy to the extreme. My friend swears the rejuvenating power of daily ice bath restores health. (click here)

Ice Man philosophy (The Wim Hof Method) developed by a Dutchman, claims the submersion in extreme cold water when combined with breathing technique leads to a cascade of health benefits.

Cryotherapy helps elite athletes maintain peak health and recover quicker.

Although I am never tempted to submerge in ice, I found that swimming in cold, open water leaves me feeling exhilarated and pain free for hours especially since I suffer from an inflammatory disease that affects muscles, joints and connective tissues.

Even if you don’t swim, walking along the ocean as waves break against the sand, sitting by a river, or taking a hot bath, which also relieves stress by promoting the release of endorphins, helps heal whatever ails you.

Or take a more extreme tip from my rugby friend and the Dutch Iceman and jump in. Join your nearest penguin club to enjoy the ultimate winter freeze. Just make sure you have a doctor’s go ahead and proper training first

Opening Up About Depression – Mental Illness Awareness Week

Millions of people suffer from mental illness and I am one of them. Millions more are affected because a friend or loved one suffers from a disease that may be difficult to diagnose, and even harder to endure. This October 7-13th, under the theme of Cure the Stigma, the National Alliance on Mental Illness urges everyone to get involved because whether we are willing to admit it or not everyone is involved.

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In the US alone, one out of five adults and children will experience a mental health condition in their lifetime.

Members of my extended family on both sides of the Atlantic have struggled with mental disorders. In addition to genetic factors, chronic illness, death of loved ones, natural disasters and traumatic stress, any extenuating circumstance can tip the fragile brain chemistry.

Though anxiety and depression may be the most common disorders, there are dozens of others from personality disorders, PSTD, dissociative disorders, psychosis and schizophrenia to name just a few.

My maternal great grandfather, a Norwegian immigrant, lost his 8-year-old daughter, when she died from an illness 2 weeks after arriving on Ellis Island. Three months later, his wife died giving birth to my grandmother. Living in a new country with no support system, he sank into a depression and never recovered.

Though perhaps part of my genetic make up, my depression is more likely a result of living with a chronic illness. Clinical depression will be triggered in an estimated one third of people with serious medical conditions especially in those with a biological vulnerability to a mood disorder.

Depression becomes a common component of diabetes, heart disease, lupus, fibromyalgia, Parkinson, cancer, multiple sclerosis, chronic pain and others illnesses where reoccurring symptoms wreak havoc with one’s life. Some illnesses like Lyme neuroborreliosis, MS and other inflammatory diseases attack brain tissue. With no cure in sight, the end result can be a spiral of despair.

Ever the athlete, I blamed myself. I thought that I should be mentally tougher and physically stronger to overcome the pain, illness and depression, but self-blame serves no purpose.

The toxic stigma associated with mental illness causes shame and fear. Many people continue to suffer in silence preventing them from seeking help.

Eventually through research, I finally found a doctor who could treat my medical condition, which greatly improved my mental state. I sought solace on-line in the words of strangers, who were coping with the same nightmare disease.

Even though chronic illness has no quick fix, knowledge can be empowering. The more I understand my disease, the better I was able to accept and learn to live within the limitations it puts on my life.

Society scorns vulnerability, so we hide our weaknesses and suffer in silence.

Many illnesses involve stigma and shame, especially mental illness. Don’t buy into it. The only people who truly know what you are going through are those people who suffer from or live with a loved one who is suffering from a mental disorder.

Pain, suffering, and a sense of hopeless zaps our energy, so take baby steps to bring you peace. If you are the caretaker give yourself a break. If you are the patient take a time-out. Walk in the woods, work in your garden, read a good book, watch a funny movie, stretch your limbs.

So many times I have felt like I cannot go on. When I can bear it no longer, I cry. Then I pick myself up off the floor and go back to battle. On my worst days, I don’t look too far ahead. I tell myself I only have to make it through the next few moments. Then minute-by-minute, hour-by-hour, day-by-day, I survive.

You will too because you still have so much to offer your family, your friends, your community!

Reach out. Speak up. Help Cure Stigma.

You are not alone.

Hiking Jura Mountains – Paradise Outside My Window

Paradise lies outside my window and yet when you see beauty everyday you take it for granted especially when caught up in the frenzy of working and raising a family. Retirement allows one to slow down and appreciate the view. Limited by bad feet, bad knees, and a bad back I minimized movement when teaching, so that I could make it through the day. I stopped doing things that I loved because it hurt too much and I needed to save energy. Now if I need to rest half a day to recover, that still leaves me a half a day to play. So I set a new goal – conquering the Jura Mountains outside my window.

The sub alpine mountains, which follow the French Swiss border, separate the Rhone and Rhine river basins. The name Jura with its dense forestation was derived from the Celtic term for forest. Within a 20-minute drive, we can be up in the Jura where hiking, biking, snow shoeing and skiing trails crisscross the centuries old mountain range that lent their name to the Jurassic Period of geology.

Like a race-car driver, Gerald maneuvers our car around hairpin curves of route de Nyon, a favorite of motorcyclist that leads to St. Cergue, a small mountain village. On the outskirts of town, we park alongside the route de France next to hilly pastureland. Cows graze while giant bells around their neck jangle with their languid movements. Though the placid scene looked inviting, a sign warned beware of cows with calves. Perhaps, it was an omen when our ill-fated hike started with a detour around the cows.

A few hundred feet away from the livestock, we climbed the stone fence and cut across the lumpy terrain toward the forests. The evergreen tree lines and boulder filled fields remind me of the hilly parts of America’s Wisconsin dairy land. The difference lies in the dimension. Once you leave the pasture, sheer mountaintops open to sumptuous views of the valley. Wild flowers dot the fields; sycamore trees turn hues of red, yellow and orange in the distance.

I struggle to keep up with Gerald who sets such a fast pace I never have time to savor the majestic sights overlooking the Geneva basin.

The higher you go, the more rugged the terrain. The dirt cow path gives way to needle covered trails that intersect oak groves, beech and pine trees. Some stretches of trail go straight up. Fortunately rocks, chipped pieces of the eroded mountains, offer footholds at regular intervals.

Above the tree line at 5,300 feet, hardy Alpine grasses grow in the chalky soil. The Jura’s highest peaks lie in the south near us in the Geneva area. A yellow pedestrian sign points toward the Dole at 5,500 feet altitude, but after an hour of steady climbing my legs feel rubbery and my lungs burn. Instead we opt to turn to head back down, but which path takes us back?

Too many signs point too many directions towards too many paths. Though I trust my fearless Frenchman, who has an uncanny sense of direction, we hike for hours with no civilization in sight. I fear his “short cut” will turn this 2-mile walk into another one of his famous all day treks. (I am not exaggerating family members can attest this.)

At long last, we spot a chalet where we ask for directions and realize we missed a turn and ended up at the lower end of the village. Our car is 2 km away uphill. By that point, my knees twinge each step I take.

I hobble along ready to hitchhike home while Gerald jogs ahead back alongside to interstate to pick up the car.

Unable to move my limbs for the rest of the day, I treasure the luxury of retirement. I laze about with ice packs on my knees enjoying a good read while feeling chuffed. My Fitbit recorded a personal best 18,352 steps (7 miles). Every single cell of my body screams with inflammation from over exertion, but sometimes the pain is worth the gain. It is not everyday that you conquer a mountain.