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“FEEL” is a 4-Letter Word

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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.

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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.

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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.

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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.

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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.

Cracking Under Pressure

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Yohan’s Foot Surgery – #17

6 months later, he is still crutching around the house.  Every time Yohan attempts to walk on the surgically repaired foot, he develops open sores and blisters on the ball of his foot. We were hopeful that the custom-made orthotic would shift his weight to a better, more functional position. It does, but his fragile skin just plain cracks under pressure.

Infection is also an on-going concern. With little sensation on the bottom of his feet, the seepage from the sore was the only indication something was amiss. Now, to avert danger, he inspects his soles day and night with a telescoping mirror.

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“You need another surgery on that same foot?”  I repeated incredulously as if I had not heard him right the first time. Sounding deflated, he explained, “Yeah… Dr. Pfeffer wants to take the pressure off the ball my foot, by surgically lifting the bone.  He also wants to straighten my toes, and I’m not too sure about that. I’m going to think about it. Anyway, all in all, it’s a 6-8 week recovery period.”

Remaining calm and collected on the outside, I steadily asked a few more questions, showed my support and told Yohan we would do whatever it takes to get him walking again. But inside, I’m all like, WTF? Another surgery? You gotta’ be kidding me. My friend, Bethany had her feet surgically repaired and now she is walking all over the place. In fact, she can walk further and longer than most people I know. And Jeana had surgeries…ONCE on each foot, and now her feet look great! She has funky pinky toes, but hey, she can dance, walk, and exercise.

As I thought about this new piece of information, I suddenly remembered all the community members on our Facebook group who had mentioned having multiple surgeries – 10, 15, 20 operations over the years. I had put these people in the category of anomalies. They must have had really bad surgeons or maybe the procedures were done a long time ago when surgeons did not know CMT and really hadn’t a clue as to what they were doing. Today, surely, with advanced technology and techniques, a second surgery on the same foot within a 6-month time frame is probably unheard of.

Many DO have multiple surgeries to correct CMT feet. It may not be news to you, but it just hit me that I must be completely delusional.

delusional-unicorn

As I count, I realize that it is more common to require several procedures on each foot, and then some over the years, than to have one surgery and be done with it. In fact, just last week I ran into a woman at the local fruit stand who commented on the Shark-O-Marie-Tooth bumper sticker on my car. “Oh, I see you have that too,” she muttered as she whisked by me.  “What do I have?” I asked a bit confused. While feeling the ripeness of a cantaloupe, she offered, “ That thing, you know- Charcot-Marie-Tooth. My husband has that too.” She moved on to the kiwi, popping bite-sized samples into her mouth. “He’s in his 70’s now and he’s had over 23 surgeries on his feet over the years.”

I almost choked on the chunk of apple that lodged itself in my throat. Funny how reality changes once you open yourself up to the world. Haven’t you ever heard a new word, idea or process, and then you hear about it again and again, wherever you look. This phenomenon actually has a name: The Baader-Meinhof Phenomenon.   Never heard of it? You will. Now that you are in the know, your unconscious will be scanning the environment looking for this word and you will be surprised at how often it will crop up from this day forth. This phenomenon even has its own Facebook page: https://www.facebook.com/TheBaaderMeinhofPhenomenon

Where was I? Ah, yes…back to Yohan.

The second surgery on the same foot is not scheduled yet, but come January 3rd, a call to Dr. Pfeffer’s surgery nurse will be made. Welcome 2017…….it can only get better, right?

PS: It’s not all doom and gloom. Yohan is finally using the knee scooter we’ve had since day 1. He wheels himself around the house with ease, running into people, objects, walls. He’s become quite adept at steering and getting around.  Wheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!