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.

CMT: An Obstacle To Success?

 

Yohan in PT – Prediagnosis

“His test came back positive for what? Sure, that explains a lot, but what’s it called again?” I asked stunned and a lot bewildered. “CHär/- Kät/ -Merēd -TOOTH, which sounded just wrong when he said it. I guess it sounds strange ANY way you say it, but he was completely butchering the French pronunciation of my son’s new disease (we are all French – can you blame me?) The take away was that our beloved 7-year old son Yohan had a progressive disease of the nerves, WITH NO TREATMENT OR CURE, which would make his muscles weak and useless over time. I felt dead inside – for a very long time.

Alpine Slide, Stowe, VT

My world shattered into millions of pieces that day, and I never thought we’d be able to pick up all the scattered bits to reformulate our dreams, our hopes, and our wishes for our son and our family. This reassessment took time, effort, and a lot of soul-searching, but we managed to accept the diagnosis and manage the Charcot-Marie-Tooth disease or CMT the best we could…. one day at a time.

As a mom, it was tough watching my child struggle with pain, braces, physical limitations, and obvious differences. Maternal instinct ordered me to protect, shelter, cajole, and, especially, do something—anything—to make the world a friendlier, more secure place for him.

For a while, school also became an inhospitable place, and bullies had their way of ruining a perfectly good day. Yohan’s self –esteem and self-confidence took major hits and his anxiety skyrocketed. The more I tried to lessen his burden by catering to his needs and lightening his load, the more resentful and withdrawn he became.  Unknowingly, I was giving him the message he should not go out of his comfort zone because the world is a dangerous, scary place. And, I was setting him up to be reliant on me for simple tasks he was able to do all by himself.

We found an excellent therapist whose specialty was counseling kids with medical issues. Our goal was to empower him by making him accountable for his actions, giving him more and more responsibility, and providing him the space he needed to become autonomous and independent.

Sounds pretty good on paper, but implementation was another story.

On one of our many trips to Vermont, Yohan wanted to try snowboarding. I subtly, but unsuccessfully tried to talk him out of it because I did not want him to get hurt nor fail. He has CMT-related back issues (kyphoscoliosis), tight calves and heel chords.

Kyphosis + Scoliosis = Kyphoscoliosis

 

I assumed the worse – in my frightened mind, he had at least a 75%, maybe 80%  chance of falling in the powdered snow, way over his head, and suffocating because he would not be able to stand up.

First Snowboarding Adventure

With the least amount of enthusiasm you can imagine,  I rented the snowboarding equipment, grumbling under my breath the whole time, and when father and son left early one morning after Christmas, I stayed home and tried to keep very busy, blotting out what was happening on the slopes.

Later that day, after what seemed like an eternity, Yohan burst through the door, still in one piece and with a look of content satisfaction on his face. “I loved it!” he blurted out proudly. “I’m going to take this on seriously! I had such a great day!”

Like many first-time snowboarders, Yohan took a good many tumbles and falls in the snow, but he was confident in his abilities. He knew what he wanted, so he left home with determination and a can-do attitude, and came back fulfilled with a sense of accomplishment.

That event was followed by many more like it and served to reinforce what I already knew as a parent but still found difficult to wrap my head around.  Even though Yohan has CMT, there are many things he can do with the right support, guidance, and freedom.  Gilles, my husband was exemplary in providing many unique opportunities for him to explore his surroundings. An avid skier, mountain climber, biker, etc….he went out of his way to find activities that he and Yohan could do together, as a team.  I am so grateful for my husband’s patience, effort and time with Yohan, as his childhood was full of fun adventures and learning experiences.  I wasn’t as thrilled about some of these outings at the time, but I usually saw the photos after the fact and they speak for themselves-they have memories- good and bad- to last a lifetime!   As parents, if we do not encourage our children to dream big, they might never know all the beauty, wonder, opportunity this world holds.

Kayaking with Gilles and friends

Yohan with Athos, Gilles with Chyna

 

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Yohan is scuba certified, thanks to his dad.

Do you remember the movie about the life of Ray Charles, “Ray”? Despite his total and permanent blindness at the age of 7, Ray Charles’ mother treated him the same as any other child. He was made to do his chores, learn to get around without a cane, and fend for himself. “I won’t be here forever,” she repeatedly told him. Harsh though her treatment of the young Ray seemed, their story is filled with passion, love and many teachable moments. As hard as it may be, and still is, I have witnessed Yohan’s challenges, disappointments, and heartbreaks. But I no longer worry as I am confident he has the emotional fortitude to get through just about everything. If there is just one gift with which I wish to leave him, it is the knowledge that with an open and positive mindset, he can and will achieve his heart’s desire.

 

Archery is still one of his favorite pastimes.

 

 

“FEEL” is a 4-Letter Word

Yohan’s Foot Surgery #19

 

 

voices-funny

I hear voices. Eavesdropping, as if I were an innocent bystander, I witness the back and forth volley of words, arguments, and reasoning. Often, I put a harsh stop to the banter, for fear of losing too many precious minutes to internal disputes and emotionally draining debates. Trying to reach my neutral, rational space often feels impossible, like I’m swimming against a strong current intent on overwhelming my frantic efforts.  Yet, somehow, someway, I usually manage to quiet the noise, at least temporarily, and transition into a state of calm deliberation, frantic activity or self-imposed numbness.

Yohan had his first ever foot reconstruction surgery in June and 8 months later, he’s still not walking without using crutches or a knee scooter (see previous blog posts for the whole story). As soon as he starts to put full pressure on his foot, sores develop.

sore

 

When that happens, staying off the foot until it heals is the remedy. To offset the pressure, he had his shoes modified, new orthotics made, which were adjusted again and again and again, only to have the sore reappear when weight-bearing.  I know that all surgeries do not go as planned. You probably also know that surgeries are risky, in many, many ways. But I thought the surgeries that went awry happened to other people.  But this time, Yohan is that other person.

The holidays came and went, and in January we found ourselves at a standstill, not knowing what direction to turn. The last pictures I sent to our surgeon showed how Yohan’s foot had healed, and it did not look right.  For some reason, his heel looked misaligned, causing excessive pronation and weight distribution imbalance.  Our surgeon, Dr. Pfeffer, was perplexed, but to his credit, he’s promised to make it right. Putting ego aside, Dr. Pfeffer is determined to make the next surgery the “last surgery” by asking for second and third opinions from well-respected colleagues.  He wants to make 100% sure that no rock is left unturned before going back in to correct the lopsided foot and straighten Yohan’s toes. His humility, commitment, and compassion command our genuine respect.

foot

Left Foot After Surgery

Nevertheless, I dread this second surgery. I just want Yohan to be able to walk with ease, even if it is only short distances. And in all honesty, I may have felt, if only for a microsecond, discouraged, angry and saddened by all the challenges Yohan’s already faced throughout his 23 years on this planet, due to the effects of CMT. He complains rarely and manages his day-to-day with laughter, humor, and hope. Yet it is difficult to witness his debilitating fatigue, chronic pain and now, successive surgeries. I wish it weren’t so, but it is so and that’s what is true.

shark

In general, I tend to live in my head, not my heart. Why open up to intense emotion, when the risk is getting sucked up into a vacuum of never-ending despair and misery? When my thoughts become dark, the voices in my head try to cheer me up, scold me for being negative and/or neutralize the negative with positive thoughts. This process has become so automatic that I often no longer know what I feel inside. Many believe that raw emotions, in all their complexity, are an undeniable part of the human experience, serving as a profound source of inner guidance and direction.

images-head

 

Yeah, well my inner feeling mentor acts more like a sneaky stalker than a trusted ally, ready to pounce when I am least protected. I’d rather stay in the neutral zone and avoid the war-torn areas of my life. Yet I often wonder where those intense feelings go. Do they evaporate? Remain in the body unexpressed and ignored until the pressure builds so, they just explode? Do feelings have feelings? So many questions, so few answers.

The second surgery does not yet have a date, but it will be soon, in the near future. We’re all doing our best and trying to live in the moment. We’ll get through. Thanks for listening. And if you have a moment, let me know how you cope through difficult times. You never know, your advice and feedback may just be of help to others someone else.

Surgery is Imminent

Yohan’s Surgery #1 – Surgery is Imminent
June 20, 2016
The Eve of Surgery

 

His toes are curled, especially the pinky toe which begs attention by standing just that much higher to make wearing any shoe a challenge. His crescent arches make walking a balancing act. His calves are as tight as the string of a bow and his ankles are turning out as the supporting tendons lose their grip. Thick, but hard earned callouses are just a bonus for winning the CMT lottery.

CMT is usually passed down from one generation to the next. It is inherited. Yet, neither my husband nor I have it. Yohan is the first person in our families to have CMT. His CMT is caused by a spontaneous genetic mutation. A mutation that can be passed on to his children, his children’s children, and so on and so forth.

Yohan will have reconstructive foot surgery tomorrow morning at 7:00 am, a surgery which has been planned for a year and scheduled for 3 months.

CMT foot

A few weeks ago, in a moment of sheer fear and anxiety, I clumsily suggested that we might want to get a second opinion on the necessity of surgery, a surgery that was only 3 weeks away.

In shocked disbelief, Yohan blurted out, “Are you expletive kidding me? After choosing to put my life on hold for a year after graduation? After all the in-depth discussions and conversations we’ve had?   No way. I’m resolute in my decision. Now let’s get this over with and put it behind us.”

Enough said. My worry asked the question and the voice of reason responded: the surgery is a go. The reality is that Yohan can no longer run, walk with confidence or stand without pain. It’s time. It’s time for an upgrade that only the hands and skills of a competent orthopedic surgeon like Dr. Pfeffer can offer. After tomorrow’s surgery and a 6-month healing process, Yohan’s calves will relax, his pinky toe will align, his arch will flatten and his tendons will be strengthened. Tomorrow brings the promise of less pain and more stability.

Any surgery is risky. And the recovery for this particular surgery is long and tedious.  But the possibilities of a new tomorrow are endless. So, when anxiety rears its ugly head, I am guided by Yohan’s words: Plan for tomorrow, then live in the now. Our brightest future lies in the sound decisions of today.