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The next months were some of the best in my life. Times like these were what I had been aimlessly searching for, and my time was now. Still yet, I had the rather large task of keeping my health – specifically CMT, a secret from the love of my life. Masking my daily functions is a big deal, but it was worth the pain and discomfort to me. Our days usually consisted of talking. Some days we planned picnics and fishing trips. All in all, it was most wonderful, but the pain was still present, tossing me around, controlling my life and causing me to hide truths about myself, but worth enduring just to see her smile.
I definitely had stronger feelings for her but I struggled to keep them at bay, because certain circumstances applied. We both had voiced our opinions about a relationship, and both agreed that just staying “friends” was what we both wanted. She had just left a nasty relationship and I had been bouncing around with no happiness in sight. When we spent time together things just seemed perfect. I didn’t want to accept this at first, but I really could not fight off my feelings for her. After a few weeks had past with some quality time invested I saw a perfect opportunity to stake my claim. I knew, deep down, this could be a big mistake on my behalf. What if she said no? What if she didn’t feel the same way as me? These two questions were beating me up inside so I decided to bite the bullet.
Knowing she planned on returning to Florida in a few months I took a huge risk. Finally one day, I just swallowed, took a deep breath and looked up at her and said, Minda, (I paused), will you be my girlfriend? She was shocked, I’m sure, hearing that question coming from me after I had clearly stated I was just not interested in a relationship at the time. She looked up at me, smiled and said, “Yes!” Wow, I have yet to ever describe that feeling accurately but, if I had to I would use one word, it would be AMAZING! That night I was riding a high and feeling the best I had felt in years. Later on that night she said, “I never thought you would ask!” I thought to myself, if I had known you felt that way, I would have asked a long time ago! I knew this was the girl for me, never second guessing the decisions I had made.
After a few weeks, I decided to move in with her and her family so we could spend more time together. This was definitely an easy decision for me to make but, on the other hand my health and worries were extremely hard to hide. I constantly considered how I would do things so no one would ask about my feet. Even so, the occasional question would come up, someone asking me, “Why are you walking like that?”, or, “Did you hurt your foot?” I would quickly respond in a way so the question would be forgotten. These stressful thoughts often clouded my mind, distracting me from the important things happening in my life. Still, I was very adept in masking my pain and hiding my physical decay.
I kept a bandage and ointment close to me and my feet pretty much all the time, always keeping my feet hidden as to avoid questions about them. The pressure ulcers were becoming larger and much worse when they reoccurred. I counted on my family members to obtain my oral antibiotics used to treat the infections in order to avoid the doctor visits that would blow my cover for sure. Anymore, I was terrified for someone to even say the word “doctor.” But the pain was unbearable at times, sleep was almost nonexistent, and plain and simple, my life was deteriorating. Yet I had plans for Minda and me. I was determined to let nothing stand in my way, not even my sickness.
I was becoming really overwhelmed by everything happening at work and at home. My job was physically demanding and left me drained by the end of the day, not even wanting to be social at all. My feet hurt so badly, by the end of each day I found myself sitting down and thinking of any excuse to stay home. Pretty sad to tell you the truth, I was once a very social guy, on the go all the time. Now, I felt useless and non-deserving of the special person God had blessed me with.
After a few years together, we moved into a house we could call our own, home sweet home. We spent many hours working on our new home, we were so proud and feeling accomplished. Painting, sanding, and cleaning were very hard for me to do. Moreover, I was always dreading even a walk outside to the mailbox. I was in a lot of pain. Even so, some days were better than others. It was during this time we became engaged and started planning dates, looking forward to the big day. My life was coming together yet at the very same time, falling apart and nobody knew this but me. I felt completely alone yet I had tons of love and support all around me. My decisions were becoming my demise but, I had so much to live for and a great person in my life who would do anything to keep me safe, if only I would be honest with myself and with her, and let her into my secret, pain filled world so she could help me.
My daily life became more challenging as time passed. Not a day went by that I didn’t wish I was someone else — with a love for life, more spring in my steps, and the will to make and accomplish goals in my life. Sad to admit this. I strived to make the best of what I had to work with. How I handled my physical disabilities was totally my choice, but keeping my problems a secret created an extremely difficult life. I made certain I looked fine – completely normal — to everyone. I kept Charcot Marie Tooth a complete secret – no one knew my condition, not even the doctors. I stubbornly ignored all the warning signs and symptoms. That was the life altering mistake I would later regret.
I lived with my grandmother, a single young man too embarrassed to let others know how I really felt – scared, overwhelmed, in so much pain. I was missing the best days of my life, spending most days in a chair, my feet elevated, nursing yet another infected wound that had flared up on one of my feet. Briefly, my feet would eventually take a turn for the better, but a few weeks would pass and, sadly I would be in pain and sporting an open wound yet again. These open sores are very difficult to explain to people who are not familiar with neuropathy. The feeling of no feeling, complete loss of sensation in your feet, yet at the same time, constantly throbbing in pain, falling and pitching, and just plain miserable. How do you explain no sensation yet throbbing pain simultaneously? When I developed an open wound, I could never feel it forming. I would notice a soiled sock and instantly my heart would drop. I spent more time searching for a place to prop up my feet and less time enjoying my young life. I imagine people assumed I was an introvert, a recluse, preferring to stay alone and inside even on an inviting, warm summer day.
I turned to social media to for most of my teenage life. The internet was a Godsend to me. I could sit and recover, yet be plugged into an active life. As a young man, I had dreams of becoming successful and meeting someone who would make me happy. In an odd sense, this made me happy and I felt active again. I made lots of internet friends who only knew me as being a funny guy, always joking and full of life. My friends never suspected the funny, full of life guy was hiding tons of hurt and anguish. I made sure to keep my distance from people, never revealing how sick I had actually become. I wondered if I would ever meet a special lady with whom I could be 100 percent “me”. There was always going to be that fear of pushing away someone for whom I cared. These are thoughts a young man should never have to experience.
I received a message via. facebook from this beautiful girl I had never seen before so instantly, I became overjoyed and hopeful. We communicated back and forth, I put forth all the witty charm I could muster and finally said the words, “would you like to hangout sometime?” A reply of yes, and I was glowing with hope yet nervous she would discover my secret CMT disease. The next day I jumped in my ol’ truck and was on my way to pick her up for the first time. I carefully planned a date that didn’t involve anything physically demanding. I sure didn’t want to give away my bum health immediately and risk pushing a good looking woman away from me. We rode around for hours just talking, it seemed so nice to finally connect with someone and seek comfort. For the meantime, my mind was at ease, not pondering thoughts about health and wellness. For the first time in a long time I was dulling the pain with happy thoughts.
That night, I had no intentions of developing feelings for her but I did. I honestly could not stop looking and smiling at this beautiful girl. I was being torn between a great girl and a degenerative disease. I chose the girl and decided to try and hide the cruel effects of CMT. I could not risk losing this special person. I had no idea what a meaningful blessing she would be to me. Lord knows I was occupying my mind with dreams and hopes of joy and not poisoning my thoughts with CMT. My life’s problems were beginning to simplify or so I hoped so…
The days passed. My condition deteriorated. I suffered chronic pain, mentally and physically. The challenge to maintain the façade became almost too tough but I continued to shove reality into a distant corner and slap on the happy face daily. The stress definitely took its toll on me. No matter how tough I presented myself to the world, many times I found myself slipping. I was beginning to crater. I may have fooled some people, family and friends, but mostly I fooled myself. When asked, “Timmy, are you ok?” or “Timmy, how did you hurt your leg?” I shrugged it off, attempting to redirect their attention, laughing and changing the subject. I breathed a sigh of relief, believing I was successfully avoiding burdening anyone. Deep down, I was scared to death, frightened at how sick and disabled I was becoming, frightened it was getting more difficult to hide.
One of the main reasons I never received the medical care I needed was the expense. Medical expenses were a huge stumbling block while I was growing up, coupled with the lack of knowledge concerning my condition and the lack of treatments available for patients with CMT. Patients with CMT were often misdiagnosed and actually still are today. Many people with CMT are actually diagnosed with Multiple Sclerosis. Multiple Sclerosis is an autoimmune disease that presents with almost identical symptoms. When I was a child, no doctor treated the actual disease – the CMT. Instead, doctors focused on treating the symptoms. Sadly, to this day, this still occurs and to this day, there is no real treatment or cure for CMT or consistent success in treating the symptoms. Patients find relief experimenting with different drug protocols and therapies but no drug or therapy seems successful long term. So patients with CMT tend to get shuffled around the medical community simply because no one knows what to do with them. With an inherited disease like CMT, the entire extended family is affected with multiple patients in every generation. Oddly peculiar to families with afflicted with CMT, collectively, the extended families feel shamed by the disease. Strangely, entire families attempt to hide their family affliction of CMT to the public. It has only been in the last couple of decades, literally, patients with CMT are finally stepping out of the shadows, many times, much to their families’ chagrin, and purposefully creating awareness of CMT in the search for answers and a cure.
As a little kid, and to this day, late at night, or in moments of weakness and insecurity, I secretly ask myself those looping, haunting questions: the “why?”, the “what if?”, the “how come me?”. Now, as when I was little, I force my mind to silence this absurdly useless thinking. This is my life and I choose to be proud of my life. In spite of my challenges with CMT or because of them, I continue to push through my limitations every day.
I’m pretty sure by now my friends following this blog are beginning to get it. I was constantly in pain, completely beat down, and losing my sense of direction and interest in life. I was extremely dissatisfied and very depressed. What do you do in a car with no steering headed down a hill? You ride the brakes hard, which only serves to cause more damage to the car. This was my life at this point in time – a car without steering and me so desperately riding the brakes smoking hard, grinding them right down to the rotors. I was living on borrowed time with my legs and feet but I haven’t even begun to share the problems with my hands…
As the CMT community understands, our hands give us a very difficult time, too. My hands look funny just to be bluntly honest. The muscle tissue connecting my thumb to my hand has vanished. This is a CMT trait called “muscle wasting”, and becomes progressively worse with time. My fingers want to do that “claw” thing — draw into me when I lay my hands on a flat surface.
Often, the simplest daily routines become a nightmare. At age 16, I noticed small things others might not even notice but these incidents set me apart from all my buddies at school. I could no longer hold eating utensils correctly, with the fork or spoon in my hand, grasped gently with the thumb and index finger, palm facing toward me. Instead, the only way I could manipulate an eating utensil would be to awkwardly clutch the fork or spoon like a gardening trowel, so embarrassing, like a mannerless caveman. If I did not hold it like this, I would drop it. I’ve since attempted to modify my grasp of eating utensils, but sadly, this is what I can manage so I accept it. The fatigue in my hands is really horrible, especially in the colder temperatures. Try squeezing a tennis ball really hard, repeatedly for 3 minutes, as vigorously as you can. Now hold a fork properly. You might sense the constant state of fatigue in my hands every day.
Similar to the pervasive fatigue affecting my lower extremities, I suffer equally with my hands, and the muscle wasting progressively takes its toll on my physical well being as the years pass. Charcot Marie Tooth causes persistent numbness and tingling that never goes away. This numbness and tingling – more like a burning sensation, reminds me of when we were little kids and someone would grab your forearm with both hands, twisting the skin in two different directions at the same time as hard as they could. If you ever experienced this, you know it burns like crazy. Well, the pain, tingling and burning I experience constantly feels just like that, only some days are much worse than others, and it never stops. Cold temperatures intensify the situation. If my hands get cold, they take a lot of time to warm up and ache and burn uncontrollably, like a really bad sunburn from the inside out. On a good day – I merely experience a pins and needles sensation like when a limb has been “asleep” and is “waking” again.
Cold temperatures seem to be my worst enemy and limit me to doing things a man just enjoys doing. I love to hunt and fish but the issues with my hands make it very difficult. My friends know I will keep on doing what I love regardless of these problems and this pain. I am very skilled at appearing completely “normal” — just an average, ordinary guy. “Masking” uses a great amount of energy in and of itself, simply attempting to fool the world and appear “normal”. I am actually struggling in my own little world.
Then there is this: my hands will actually cease working from time to time. Absolutely stop working, unable to do simple and common everyday things such as holding a cup, grasping a TV remote, or retrieving a dropped coin from the floor. This actually causes me to constantly drop things. An item will literally slip from my grasp without me even realizing, since I cannot feel the item in the first place. Guys don’t think about how much time it takes to shower and dress for the day, they just do it. But guys with CMT think about it. Heck, guys with CMT have to schedule it, like an event. Scheduling the allotted extra time to accomplish simple tasks like brushing my teeth and combing my hair is a daily burden. Most guys do not even give these simple tasks a second thought.
Here is an opportunity to experience CMT hands for yourself. I encourage you to try this exercise and time it. Take off your shirt and jeans. Tape the fingers of both your hands together. Tape all of them, even taping your thumb to the other four fingers. No opposable thumbs in this exercise. If you really want to experience what I feel to the fullest, wrap your hands in saran wrap first to dull the sensation, or put on a pair of gloves, then tape. Start the timer. Grab your jeans and shirt. Hey, if I can do it, you can do it. Now, let me know when you’ve wiggled into those jeans and that shirt using your taped up hands. No worries. Plenty of time, here. No cheating now. Wait, you can’t leave the house like that – your fly open and shirt unbuttoned? You are not dressed yet! But — are you frustrated yet? Keep timing! You will eventually get your fly zipped and your shirt buttoned, your socks on and your shoes on and tied. Don’t want to be late for work… How you feeling? A little winded? Exhausted? Almost aerobic?
My hands are not taped together, you’ve pointed out. Agreed. But there is absolutely no sensation in my hands. Moreover, my thumbs fold into my palms, no longer opposable. Might as well be taped up just like I suggested you try, obviously making a simple task like getting dressed, something accomplished daily by a 4 year old, completing daunting to people with CMT.
Before you untape your hands, try picking up a small object like a coin or a screw you’ve dropped on the nice, flat floor, not carpet. I wonder if my wife knows how much money has been swept under the sofa in frustration. There must be a goldmine under there! Ok, now you can untape your hands. Just a day in the life…