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! :)