Embracing Anxiety: A Dialogue for Inner Strength

The unwelcome visitor taps softly at my door. Dread. I know the intruder all too well. “Why now? Why today?” I shudder. And then it starts—hands trembling, heart racing, shallow breathing, uncontrollable ruminating. After two solid years of focused self-discovery and reflection, I thought I had rid myself of episodic panic. But here we go again. WTF.

So, what do I do? My first instinct is to run away and escape through music, meditation, TV, and reading, but the fear, tightness, and contraction lie just beneath the surface, like lava rising in a volcano, ready to erupt.

And then I ground myself and think, “Do the opposite.”

So, I change tactics. Instead of fleeing, I turn and address the beast, “Can we sit down and talk? Ignoring you just makes you more intense. I’m ready to hear you out, to understand why you hold me in a dreadfully tight headlock, making me fight for every breath. I’m tired of fighting. You have my undivided attention.”

Tick, tock, tick, tock, tick, tock. Time slowly passes, but my anxiety remains quiet, closed off, and unresponsive. Its paralyzing grip icily pins me to the floor. Its silence is deafening. It’s like I don’t matter at all. “But, I do matter,” I remind myself.

“Please speak with me,” I beg. “I yearn to learn, to go deeper, to be informed.”

Nothing.

I sit calmly and flow with the palpitations, becoming one with the uncomfortable sensations I fear will never leave my everyday experience of the world.

“Is this an existential crisis?” I ask. “We live, we die, and no one really knows why. Maybe it would have been better to have never been born than to experience your surprise, overdrawn visits. Is it the need to control every aspect of my life, knowing nothing is really in my control?”

More thoughts interrupt—such shallow roots, torn out in the mildest of storms. I thought I was more enlightened, but was my sense of groundedness an illusion? These painful feet of mine cry out in agony, numb to the touch yet sensitive to a wisp of air. They search for a safe haven, a restorative cure, the strength and courage to hold my weight.

Back to my heart…

I think I hear a whisper. “What is it?” I cry. “Stand strong,” it murmurs. The voice evaporates before I can register its meaning. I think for a long while, and the mind attempts to derail my efforts: “If you stood up for what you believed in, you’d be ridiculed. You were ridiculed….met with scowls, beady eyes, grimaces, and mockery.”

More annoying thoughts rush in, “When God is angry, there is no hope for life on this earth, nor an afterlife without unbearable pain.”

“Hmmmmm, where did that come from?” I wonder. “How do I know this is true? Aren’t these remnants of patterns learned long ago? These are merely thoughts I’ve hung on to keep me safe, in my comfort zone, controlled by the mind.”

“Break free,” I whispered. And then I shout, “BREAK FREE!”

“Autonomy speaks to me. It resonates with my soul. Autonomy means listening to my gut and honoring my real self instead of being influenced by my mind’s admonishments, advice, moods, and energy. As an empath, I feel the energy of the world, and sometimes, everything feels weighty, overwhelming, or just too much, especially if I give without taking care of myself first. Following old patterns may feel safe, but acting without reflection comes at a hefty cost… my happiness.

I thank my anxiety for expressing itself, for opening up and keeping me out of harm’s way. I promise to listen more readily and embrace it and all other emotions (sadness, anger, grief, confusion, disappointment, shame, etc.) instead of habitually burying everything deep down, where wounds fester and refuse to heal.

My heartbeat slows, my breathing is no longer labored, and my chest expands. Ahhh, it heard me. I heard me! So many mysteries lie deep within the psyche; the more I explore, the freer I am. The journey through storms often feels impossibly painful, but once you come out the other side, reality takes on deep hues of vibrant color and excitement. You may even catch a glimpse of fun-loving unicorns and psychedelic rainbows. The view is amazingly rich!

Now, on to autonomy, self-assuredness, and inner strength to hold me upright and move forward on life’s path. Remember, in the end, it does not matter what others think. Stay true to yourself.

And take time to listen.

In Flora’s Memory – Just Say It! Again and Again and Again!

“My high school years?” she shuddered. “After the doctors diagnosed me with polio at 13-years-old, they wanted to straighten my misshapen feet. So, for the next 5 summers in a row, my school vacations were spent either in the hospital or at home, immobilized, with heavy plaster casts weighing me down.”  With raspy, uneven breath, Flora described those dreadful Mississippi summers as muggy, sticky and hot – really hot. “Neither the hospital nor my home had air conditioning in those days, so I was pretty uncomfortable –  but I got through!”  she added with her usual determination.

 

I first spoke with Flora in 2003, when I was getting to know the CMTA group leaders throughout the country. She told me that after her orthopedic surgeon “straightened her out”, she had left her polio diagnosis behind and moved forward with her life. She went to college, married her husband of 52 years – Billy Joe Jones in 1960 and had three children. After the birth of her youngest child, Cindy, she decided to stay at home to be a mother, wife, and homemaker.

Flora and her husband, Billy

Over the years, her legs weakened and her hands slowly lost function. In 1982, at the age of 45, she was finally diagnosed with Charcot-Marie-Tooth disease or CMT at an MDA clinic. Okay. There was a name for her progressive symptoms, but she wondered what she was supposed to do with the name. She couldn’t just “Google It” because home computers had not made their debut in society.

 

Luckily, by word of mouth, she heard about a CMT conference in Toronto, hosted by CMT International. No way was she going to miss this opportunity to learn and gather more information about CMT. Upon arrival, she was stunned to meet others with similarly-looking feet and hands – 200 other individuals with “the walk” including 30 people who admitted to breathing difficulties, like herself. One of her favorite parts of the conference was educating CMT clinicians about her own CMT.

In 1993, she was elated to discover a CMTA support group in her area. With her passion for spreading awareness and teaching others about CMT, it was not long before Flora stepped up as the leader of the Brandon, Mississippi CMTA support group. In fact, she involved the entire family in her mission and many weekends were devoted to mailing educational information, calling new members and organizing CMTA meetings.

Flora and Jeana Sweeney at the CMTA Support Group

Due to severely atrophied leg muscles, she lost her ability to walk at the age of 58, but that did not make one bit of difference. She continued to lead her group enthusiastically, informing the members about the CMTA, its research, and resources.   Over the course of her lifetime, she touched innumerable lives, informed countless medical professionals and supported others who had a CMT diagnosis.

Toward the end of her life, she could barely use her hands, and her violent tremors made holding or sipping from a cup virtually impossible. Her paralyzed diaphragm made breathing harder and harder with each passing day and her weakened vocal cords affected her ability to talk. Yet, Flora did not let any of those worsening symptoms stop her from fulfilling her mission in a positive, cheerful and comforting way.

I just spoke to Flora a few months ago. She called to check in, to see how Yohan was doing after his foot surgeries. She told me he was always in her prayers. She admitted that her CMT was wreaking havoc on her body, but it would never, ever dampen her inner spirit. Even in her final months, she would not leave home without her brochures. She wanted to be ready to educate everyone and anyone who would listen to her about CMT. In a recent letter from Flora’s daughter, Cindy, she confided, “Even up to her last doctor’s appointment, she educated her doctors about CMT.” In February, Flora was given a new doctor, “a cute one!” she said with a wink. Super impressed that he really was interested in CMT, he  even explained how he could help her live a productive life despite her limitations.

Flora and her daughter, Cindy

Following in Flora’s footsteps, I try to spread CMT awareness wherever I go, even if Yohan rolls his eyes out of his head like he’s screaming loudly. If we all speak about this progressive disease to our doctors, nurses, family, and friends think how many people would recognize the name, the symptoms, and the signs. “It’s CMT.” I say. “Charcot-Marie-Tooth disease.” And when the person looks puzzled, which they usually do, I remind them of the acronym – CMT.  To make it stick, I joke that CMT does NOT stand for Country Music Television. And I might add, “ It’s the other CMT-the one that destroys nerves, causes muscles to weaken, and disables the young and old. It’s Charcot-Marie-Tooth disease and we desperately need a cure.” And a cure starts with awareness.

In memory of my friend Flora, who passed on April 1, 2018, at the age of 81 from CMT-related breathing complications, please help raise awareness of CMT. Think about it – even the most worthy causes won’t receive a dollar in donations if no one knows about them. Putting a face and a personal story on CMT may spur people into action, especially if they know their support will lead to a cure.

Flora, you are my inspiration to wake up every day and fight for a world without CMT. And now, I imagine you moving freely among the stars and dancing with angels. And I smile.  I may not have told you during our phone conversations, but I admire you and love you deeply. Your memory will never be forgotten.

To find out more about CMTA research, please visit:  https://www.cmtausa.org/breakthroughs-for-cmt/