Blog inspiration and a few other thoughts

Hello again,

Today, I wanted to share a few thoughts which have been on my mind. Be warned, the tone of this post is probably a bit more serious and less upbeat than my usual. Who knows, maybe it is because I'm spending Valentine's Day sitting in a computer lab on campus. #engineering :-P

First, I wanted to talk for a moment about unity and togetherness, especially between people with chronic illnesses. I'm not sure how many of you have read the short bio on the right side of the blog, but in there it talks about my motivation for starting this blog in the first place. While I was on an intership, I was in a meeting where it came up that I had a chronic, incurable (at the moment) disease. I don't remember how exactly it had come up, but that is not the important part. The important part is when one of my coworkers, John, talked to me after the meeting about my CMT. During the course of our conversation, John revealed to me that he had Cystic Fibrosis. If you know what CF is, you know it is quite a scary disease. He said he felt comfortable talking to me about it because I had CMT, like we had a sort of bond because we've both experienced the hardships of a broken body. At first that caught me off guard, because I had never thought about it that way. However, the more I thought about it, the more I knew he was totally right. Turns out John has a blog where he talks about his CF, networks with others who have CF, and generally shares his life story. What an inspiration. One day, he finally convinced me to start this blog, and now because of him, I'm hooked. I invite you to take a look at his blog here.

Anyway, please note that I'm not trying to say that CMT is comparable to CF (not in the least), but  I am trying to say that my experience with CMT has given me more insight into the way someone like John might think and feel. However, I don't think you need to have struggled through a disease to have those insights. Sometimes I think we spend so much time thinking about hiding our problems, or running away from them, and it's easy (for me, at least) to forget that people have all sorts of hardships in their lives. Similar to the materialistic mindset of "If I just had this new gadget/car/phone/thing, I would be more happy in my life," I think it's easy for people like me, or like John, to think that "If I just could cure my CMT/CF, everything in my life would be great!" For the lack of a better term, this is complete bullshit.

Okay, now let me discuss that for a moment, before you get angry. Am I saying that curing CF or CMT would not be a good thing? Absolutely not. Would it be nice to not have CMT? Of course. But would it make me happier? Probably not.

I'm not trying to be de-motivational here, please understand that. I encourage everyone to face their problems head on, and believe me, I am going to fight CMT until my dying breath, but we just need to remember to live our lives along the way. The path to happiness is not a new TV, it's not a mansion with a 10 car garage, and it's definitely not a disease-free body.

I hope y'all have a good weekend!


Joey

Upcoming Surgery

Howdy,

This post is going to be more medically oriented, so those of you who don't like medical things may want to skip this one. SHIELD YOUR EYES! Ha.

I have determined that I will most likely have surgery on my right foot this summer. For those of you who don't know, about two years ago, I had a major ankle reconstruction surgery on my left foot. I'll post a picture of the x-ray below. Overall, the results have been astounding. I can stand for hours without any pain, weight is evenly spread from the ball of my foot to my heel, and my gait is significantly more stable. Most surprising, my left foot can almost pass as normal now.

Anyway I have eyeballed this summer as being the best time to knock out my other foot. Between my study abroad trip and the start of grad school, I should have about two months to recover. I'm anticipating three months before I'll be out of a boot, but I should be reasonably healed by the time school starts.

Here is my concern: Last time, the biggest issue with the surgery was the muscle atrophy in my calf. It's been two years and my post surgery calf is still noticeably smaller than the other.

Here is my idea: I'm going to start seeing a neurologist. I want to see if it would be possible to use some sort of electrical stimulation to contract my calf muscles and keep them alive while I'm in the cast. I know people use electrical stimulation in physical therapy, but I'm curious about its use in this particular aspect. A family friend (who is a doctor) mentioned that there had been studies done and they had shown promising results.

We'll see how my appointment with a neurologist goes, but I think convincing my orthopedic surgeon to do some sort of electrical stimulation might be challenging. Unfortunately, it seems that specialists have tunnel vision and I just hope he will agree to look into it.

My CMT friends, have you ever heard of this being done? Let me know your thoughts below! Also, post about any surgeries you've had, how your recoveries went, and any other related thoughts!

Until next time,

Joey

Validation

I don't have too much time this week for a new post, but some things are just too good to pass up. This post will be short, but sweet (I think). You people, yes you who are currently reading this, should feel special; I am being very open here.

A few posts back, I wrote about dating with CMT. Well, long story short, Joey is still on the market, but this time I have been pleasantly surprised by a person I met. There is a reasonably good chance that this person might be reading this, so if you are: yes this is about you, sorry :). Anyway, before I ever go on a date with someone, we exchange phone numbers, social media usernames, etc, and we both "creep" on each others profiles to determine if the other person is an axe murderer, or if they are worth a night out. So on my most recent date, dinner went well, and I was invited back to the other person's house to watch a movie. I will spare you the details (don't worry, it was all PG), but eventually we got around to some more small talk. Since I'm only a college student, my date asked me about my high school life, specifically about whether or not I participated in any sports. Here is where it gets interesting. I explained to my date that while I did marching band, I stayed away from most sports because I have "interesting feet." To my bewilderment, they said "I know."

Wait, what? You know? Are you like stalking me? I'm reasonably private about my CMT (unless you ask), so I was slightly...err very...confused.

They explained "I saw you had a blog on Facebook. I read your posts and looked up what CMT was. I didn't notice anything at dinner, and I still haven't noticed anything. Even if I had noticed, I couldn't care less if you have 'interesting feet.'"

Ho. Lee. Crap. I was speechless (which is incredibly rare, haha). If there is ever a source of anxiety in my life, especially on a date, it is CMT. How do I bring it up when I know they want to ask? And how to I not make it a big deal at the same time? I can honestly say I have never felt like I did when my date told me they looked up CMT. I don't know how best to describe it, but it is most certainly very, very good. Maybe I am completely over thinking this, but it is crazy to see that someone took enough of an interest in me (before we even met) to read my entire blog. I'm still kind of in shock about the whole thing.

For me, this experience provides two things:

1. Validation that there are good people are out there, and it is truly amazing when you find one.

2. Validation that being honest and open is always the best policy, and if nothing else, weeds out the worthless people.

To those of you reading who don't have CMT, this whole thing might not seem like a big deal, but I assure you, it is. It is a HUGE deal.

Alright, that is all for now. I'm not sure what my agenda was for this post, but I definitely needed to share. As always, thanks for reading :).

Gratitude

I am always amazed by the way some things come into you life at the exact moment they are needed and they have the power to bring you to your freakin knees. This happened to me on Wednesday.

First, the beginning of this semester has been a bit rough. My life seems different. Somehow I feel like I'm so much closer to becoming a big kid, who has to do big kid things and make big kid decisions. Scary, right? I had sort of felt like my life was headed in a direction I did not want, that I was settling to be a person I did not want to be, and that I was compromising my usual self for short term comfort. I had a moment where I lost sight of the things in my life that make it so amazing. I was not grateful for the good things. Then I went to a class and left completely different.

On campus, I am in the University Choir. Singing is something that I love to do and the artistry of it seems to be such a departure from my usual engineering world, so it definitely breaks up the monotony. So while I was in choir, the graduate student conductor had a bunch of little papers on the piano. She had us all take one, get into groups and share our feelings about the quotes written on the paper. Here was mine:

Let gratitude be the pillow upon which you kneel to say your nightly prayer. And let faith be the bridge you build to overcome evil and welcome good.

 

-Maya Angelou

 

This hit me, hard. Talk about incredible timing. If I am just moving about with my life, and not realizing what I have, how am I supposed to welcome the good when it comes?

 

Okay so for the point behind all this blabbering: I think gratitude is incredibly important. Now you're probably thinking "Great idea, Captain Obvious" but hear me out. We need to be grateful for the good and thankful for the bad, as the bad shows us how to appreciate the good. I am a firm believer that in life, we are all on a level playing field. Think about it:

 

You have people with insane amounts of money that have failed relationships in every aspect of their life. You have people with the mental capacity to solve the world's greatest challenges, but don't know how to simply meet someone and introduce themselves. Then, you have people who are disadvantaged significantly in one aspect of their life, whether it is poverty, a chronic illness, or similar detriment, who manage to impact people's lives in incredible ways.

 

This is the type of person I want to be.

 

I don't consider myself to be significantly disadvantaged by my own issues, but I desperately want to have impact on at least someone's life. Who knows, maybe I am just a jerk with a hero complex, but I'd like to think it is genuine. When I look back to the happiest times in my life, they are all caused by someone, not something. Maybe that is why I am a hopeless romantic, why I consider my friends to be my family, and why I think life is so much more than just the mundane day-to-day activities which define us. 

 

My friends, we are all in this together. We all have the amazing aspects, and the terrible ones; let's just try to be grateful for them.

 

 

Again, thanks for reading. You all are the greatest. I've really enjoyed the opportunity to get to know you all, and I hope that by reading my blog, you get a sense of who I am. If you ever want to know about a particular aspect of my life, or you want me to write about something, hit me up on Facebook, or leave a comment here!

 

 

Peace out,

 

Joey

Welcoming new/old friends

Hello everyone!

I'm very impressed with y'all! Hundreds and hundreds of views for each post, and from all over the world? I couldn't ask for more. I'm feeling the love, big time. :)

Every time I've written a new post, I've shared it in all the CMT groups. From there, some of you have shared the links on your own and I appreciate that so much! However, since all of the groups I post things in are private, none of my close non-CMT friends ever see them. In accordance with my new years resolution to be more honest, I think I might make the leap and share so my friends see it as well. So for those of you seeing this for the first time, this is my blog (obviously). Clearly you know I have a sort of swagger when I walk, but you may not have known why. I have Charcot Marie Tooth disease, look it up! Don't google photos though, they are gross and most don't apply to me. Haha.

Anyway, what is my vision for this blog? Why do I have one? Am I just that pretentious to think everyone wants to read about the mundane occurances in my life? Not quite. First, there is a huge online community of people with CMT who reassure me on a daily basis that I am, in fact, not actually crazy. I can't thank them enough. Second, I've been given advice time and time again that keeping a journal is one of the most rewarding things you can do in your life. Well I tried that, and failed, miserably. I don't know, I just kept thinking "if nobody is ever going to read this, what is the point?" Well when I have other people to constantly keep me accountable, it makes it easier to keep posting. So this is my sort of journal, with an emphasis on my CMT. If you like it, subscribe. If you don't, then I don't care.

So if you are new and have made it this far, then welcome! I'm glad you took the time to come read this. Also, if you've ever wondered: if you run into me in person and you want to ask about my feet, go ahead! I really don't mind taking about it. I just never bring it up because to me, that feels like complaining. Nobody likes a complainer.

As you've clearly noticed by now, I like to talk. Probably/definitely too much. I think that might stem from the fact that I hate it if people lie to me. Or when I've done something to upset someone, and they just keep quiet because that is the easier thing to do. That drives me insane. Just talk to me about it! Please! I think that the fundamental foundation of relationships is communication (in other news, clichés may, in fact, be the fundamental foundation of this blog haha). But for example, you can show people you love/appreciate them by hugging them, kissing them, etc, but there simply isn't anything quite like hearing "I love you" or "you're pretty awesome" or "thanks, I appreciate it" from someone. And, not to mention, who else, but your family and friends, do you have to tell you when you have cilantro in your teeth after eating Chipotle. Honest communication is invaluable, and unfortunately, quite hard to come by.

So what am I trying to say here? I am just rambling I guess. But I think being honest, uncomplicated, and loving, is the best way to live. So I challenge you, and myself to spend the next week or so making a concerted effort to ensure that people in your life know that you love and appreciate them. It can catch some people off guard, but it is definitely a good thing.

Before I go, I want to say I hope everyone enjoys their three day weekend. Also, remember why we have Monday off. I think being treated differently for uncontrollable reasons is something we can all agree is simply unacceptable. Life is too damn short to focus on such minor, meaningless differences between people. Take a minute and remember this on Monday/everyday of the year.

May the force be with you,

Joey

"But still, like dust, I'll rise"

I'm warning you in advance, I'm feeling emotional/deep/profound/hipster-ish for this post I'm about to write. Proceed with caution. Ha.

My body is broken. It is fundamentally and irreparably flawed in a negative way. Never will I have a celebrity body, with a six pack or arms the size of my head. It just isn't possible. When I go to the gym, I see guys who just love to stare at themselves in the mirror. I hate it. I literally loathe mirrors. Especially ones that show my entire body, with my little toothpick legs, awkward feet, and terrible posture. I also hate my shadow because it always shows my characteristic CMT swagger when I walk. It is a unwelcome reminder of my reality. I'm only 22 but damn, this disease has done a number on me. I think the most frustrating aspect is the dichotomy between how I look and how I feel. I still feel like a normal 22 year old. I still talk and act like one, but I don't look like one. And I can never change that. And I hate it.

Before you suggest I start depression meds, know this: Not for a single second of my life will I be held back by this hellish disease.

My body is broken, but my mind is strong.

My feet are weak, but my heart is unimpaired.

My self body image is terrible, but my resolve is extraordinary.

I used to be jealous of people with perfect bodies; jealous of people who could run marathons or dance like pop stars, but that is no longer. Jealousy like that is such a waste of time and energy. If I did not have CMT, I would be a different person. I would never have an appreciation of walking up a set of steps, I would never know the pain of a 12 hour day on my feet, and I would never have experienced the sorrow of a shallow rejection. Every one of these things has changed me, and I believe, rather I know, it was for the better.

I only have this single life, and I refuse to accept that CMT will ruin it. I will work as much as I can, I will learn as much as I'm able, I will pray as often as possible, and I will love without reservation.

.......

Alright, I'll get off my pedestal and remind myself that everything I've just written has been written by someone a billion times before me. Haha. None of this is new, it is just new to me.

Annnyyyywaayyy. Thank you all so much for your continued support. The love complete strangers have shown me restored my faith in humanity. I appreciate all of you more than you know. As a note, I stole the title of this post from Maya Angelou's famous poem: Still I Rise. I think that phrase is immensely powerful. All right, that's all I have tonight.

Remember to comment and subscribe!

Hakuna Matata,

Joey

Honesty

Hello everyone!

I hope your new year is starting off well. I'm sitting here in the lounge car of my Amtrak train, I have about four hours remaining so I'll give you all a little bit of insight into my life at the moment.Things are going well, considering all aspects of my life. My toes have healed well from my most recent surgery and with a sock on, my foot can almost pass as *gasp* normal. Mind you, this is only my left foot, my right foot still has it's trademark CMT shape. It's a work in progress...as is the rest of my life.

Other things in my life are going well too. Without going into too much detail with random strangers over the internet, I'll just say that, for the first time, I've been honest with friends and family about a very personal aspect of my life. Man, does it feel like a weight lifted off my shoulders! It's now clear to me that secrets really eat away at you when you try to hide them from the world. Keep in mind, I don't think you should advertise everything in your life to the entire world, but make sure your family and close friends know you well so they can support you when you need help. I always need support in my life, more often than I admit. My friends and family have amazed me with their love and support the past few weeks, and I must say, I am a lucky guy.

I will probably say this in every post, but I think it's important. I want to remind everyone that this blog is not about CMT, it is about me in general. Considering I spend most of my life NOT thinking about CMT, I will not focus this entire blog on CMT. I feel like I am much more than the disease I have, and if you have CMT, you must remember that as well!

Also, as some of you may know, I am an engineering student and "spring" semester begins on Monday. I will try to make sure I keep everyone in the loop, but I apologize in advance if my posts become slightly less frequent.

That's all I have for now. Please subscribe! Please comment! I'm letting you all get to know me, so I want to get to know you as well! Ask me questions and I am more than happy to respond!

See you on the flip side :)

Joey

Lastly, I'll share with you a selfie of me on the inner harbor in Baltimore, Maryland. See, I am a real person! :)