Monday, May 28, 2018

Awareness is important!

6  years ago I hadn't even googled my condition, it was when, after a TV show invited me, that an AMC mom contacted me and asked if she could visit me to learn a bit more about Arthrogryposis because she had never met an adult with the condition.
It was when it all started for me, she told me about all the support groups that existed and everything, the internet was here to allow us to get in contact with all the AMCers around the world. So, I decided to start blogging as a way of raising awareness.

To many people awareness might not seem as important, but let me tell you it is!
Not just because is nice to see that people care, but it actually makes a difference,  it lets families get in touch with each other, it shows new families with an AMCer that there is hope for their child, with a condition as rare as AMC, the more people know about it, the more families find comfort and information about something that truly affects their lives.

Take me for example, I never thought of the future, I actually didn't even use to think about AMC at all, it was when someone asked what was *wrong* that I thought " Oh yeah, I have a disability" but it was about it, I lived a normal life with a surgery every now and then and a lot of Physiotherapy in the middle but it wasn't until after being in contact with other AMCers that I learned many more things about it and how I had to prepare my body for the future years. I never thought of myself as a disabled person (I still don't) but I'm now aware that I have to do some things differently in order to have a better long quality live.
And this is how a bit more information has worked for me, imagine how new parent that is told that their child will never be able to walk or be independent will feel with some information that proves all of this wrong!

So please please please wear blue this 30th of June and use the social media to spread the word, Arthrogryposis Multiplex Congenita Awareness day is there to give hope, information and a family to people around the world that are fighting the same battle, the more people know about it the more families will connect and find hope...


Wednesday, April 25, 2018

Smiling thoughts about happiness


Every morning my husband Mike and I enjoy our first cup of tea in bed while listening to a podcast, and today it wasn´t different. As the podcast guest of today talked about happiness, I couldn´t help thinking that the world needed more of that sort of happiness explanation.

You see, in my opinion, we have over-idealized happiness, we tend to think that happiness is euphoric, adrenaline filled and, most of all, hard to reach. We go day to day letting the small moments pass us by without realizing that we are, indeed, being happy.

Let me explain it with an example; my day today started with the smile of my husband saying good morning and giving me a kiss, my heart rejoiced with that. Then one of my best friends called me from Puerto Rico, he does almost every day, but today it was different, today we just talked non-sense for about ten minutes, laugh out loud and said goodbye, that left me with a smile in my face and with the warm feeling that cultivating a friendship (even from afar) gives you. Then my favorite time of the day came, a cup of tea in bed with the love of my life while listening to something interesting together, that made appreciate that the simple things are the best. The morning keep its course and I got a call from an auntie saying that she wanted to help with my social project, we had a heartfelt conversation and that left me feeling as if I was on the right track with my life mission. Then, to close this Wednesday morning, I got an audio message from my best friend that lives in the UK asking me -while laughing hysterically- how comes that the poop of her baby smelled like popcorn with butter? It was a wonderful moment, we are separated by thousands of miles but still are SO involved in each other's lives, that made me feel so grateful for her. 

After all that I thought "This is what happiness feels like", a collection of small moments that make you feel something, things can be hectic, hundreds of other things can happen in a day, that don´t allow us to notice that we are being happy. We tend to think that happiness comes from  uncommon moments but if we look around our day to day we will find precious moments that mean much more than we think, like dinner time with family, the feeling of a great song coming up on the radio on your way to work or the joy of the first cup of coffee in the morning. Happiness is there, in the normal moments that we choose over and over along our lives but, apparently, we can get used to being happy and not realize when we are feeling it.   
So, I want to invite you to do and exercise, tonight make a list of three things that made you happy today, write it down as descriptive as you can, you can´t write "I´m happy I have a job"; it has to be a moment, for example, "Today I was happy when I to got seat down in my balcony to write my blog, the day was perfectly warm and the sky was blue with great white clouds. It was a calm moment, and I really needed that"
With this exercise, you will be giving yourself the gift of noticing how happy you actually are every day. Are ou going to give yourself that gift?

Saturday, April 7, 2018

My greatest revolution


A few years back after releasing a series of videos on how I do things "my way", I got at least a dozen messages from people of all ages, male and female, asking me if I didn´t feel uncomfortable seeing myself move so differently.

All that woke up a memory that had left me for a long time, when I was around fourteen years old I loved pictures, like any other teenage girl. I would dress up with my friends and take pictures, I knew the angle that worked best for my body shape and my face and I always possed the same way, so looking at myself in pictures wasn´t a big deal.
All that comfort changed one night at my first formal party, it was a Quisiañera, so there was a professional videography team capturing the special night. At that time I was a huge fan of a boy (salsa) band, I knew all the dance steps by heart as I used to dance to it every single day in front of the tv.
So, when MY tune started playing that was it, I hit the dance floor like a dancing queen, I was SO excited about it and giving it my all that the video team recorded the whole show this Misha put on.
A few weeks later, when we got together to watch the party video, it was all fun and laughs until my song came up, there I was dancing on tv, I was filmed from every angle for the whole song, showing my moves. To my friends I did great, this was the Misha they all knew, nothing new. BUT to me, it was life-changing, I couldn´t believe I moved like that, in my head my moves were right on point but in reality, I was sort of there, but mostly it was just an unbalanced crazy girl that didn´t know what the moves were like for that song.

It took me a few weeks - if not months- to shake that moment off, I truly struggled. I wanted to be the first to arrive at any event and once I sat down that would be it for the night. I just didn´t want to walk or move, to me it was just disastrous that I hadn´t realized before how differently I moved.

I remember the exact day that I made the DECISION to change that terrible situation. Since I was ten years old I had a huge group of friends from my neighborhood, we saw each other almost every day. We played together, we went to parties together, we hanged out all the time. One afternoon after that party, I was going to the shop but there were like fifteen of my friends sat in the street, to go to the shop I normally went I had to walk right by them, at that moment I felt so terrified that I went all around the block. When they saw me at the shop they start yelling at me things like " Why did you do that?" "Are you ignoring us?". I remember going back home and crying for the whole afternoon. I didn´t want that for my life, why did I feel like that in front of people that knew me and liked me just the way I was? What would happen now with new people if I couldn´t even handle my own friends?
After hours of replaying the video in my head, I came to the conclusion that this did n´t have anything to do with others, this was all on me and it was all my fault, yes FAULT. Nothing had changed except for the fact that now I knew more about me and it was ME who wasn't comfortable, not others. I was so lucky that my friends and family accepted me the way I am. So, the change had to come from... ME! At that moment I decided that I was never going to be a stranger to myself ever again, I would know exactly how I move, how I look when I eat, how I sound, I would put it all out there not just for the world but for me, everybody - including me- was going to get used to every inch of Misha. NO MORE SURPRISES.

Since that afternoon, what you see it´s me and what you see I know how it looks from EVERY angle, I can not stand the idea of not knowing how I am, this is me, this is my body and I´m going to be in it for the rest of my life, being aware of it, accepting and loving it is my choice. This has been one of the biggest and most important decisions of my life, it wasn´t easy, there were many times I wished I walked differently or many other things, but working on this every single day, choosing to accept me and love myself just the way I am has been the greatest revolution. I have freed myself from unnecessary pain, uncomfortable moments and it has given me a wonderful life. And My friends enjoying life is what we are here for, everything else is just noise.

So, if you are struggling with anything related to who you are, how you look or move, I beg you ( if I could get on my knees I would) to give all that you are an opportunity to be loved and accepted by the most important person to be loved by, YOU. It is hard work, some days you might not even find the strength to do so but, self-love is like a muscle the more you use it the stronger it gets, and the place to start is by knowing what is that you are loving, recognising yourself inside AND out, from every angle, concentrate on acceptance and being unapologetically you.
I have been in the dark, I have gone through it, and is not a place to be for anyone. You owe it to yourself to at least try, and you will see how every day gets better. Until one morning you will wake up with the wonderful feeling of enjoying being who you are in full.

Monday, January 22, 2018

Today is a good day



As the year started I had the feeling that there was so much I wanted to do, so I started by doing my vision board and my monthly plan for the wonderful 2018 that had just arrived, when it hit me, all of this planning had its specific dates, like when to start eating healthy (again) or when to start working for what I wanted to achieve in August, but what I wasn't realizing was that most of these things were things that matter to me today, so the questions were "why do we tend to set future dates to start things that are important to us?",
"Why is it that Monday seems to be the best day of the week to start anything?", "Why is that next week is so popular on our calendars to see the friends that we want to see today?" or "Why is that next year is the best time to take that dream Florida vacation that you have dreaming of for years?".
I get that most important things take time to plan, like a family vacation but, let's be honest, how many of us are really already saving for it now just to make sure that we don't have to postpone it for another year?
And this is what I am talking about, why is so difficult to take action today to achieve all those things that we want?
Today IS the best day, not tomorrow, not Monday, or the 1st day of next month.
One issue that most have is that we take life, time and health for granted and so many of  us end years with pending dreams just because day to day life takes over and makes us believe that we are doing what has to be done and that we don't have time for those "less meaningful" things like having a coffee with a friend or watching that film that your kids have been wanting to watch with you for weeks now. So, here comes another big question, when did laundry or a work pendant that should stay at the office but we decide to take home, became more important than our dreams, family time or a chat with a friend?

Let´s remember that life is today, this second is all we have. We need to start using it wisely and be aware that our dreams deserve to be fought for, today is when we have the power to shape our stories, we just need to dare to begin...



  

Saturday, November 4, 2017

My way of independence


Last week there was a post on one of the Arthrogryposis groups on Facebook on how parents should avoid at all cost getting their kids a power wheelchair if they wanted their kids to be idependent later in life. If you were one of the lucky ones not to read it, be thankful for your own peace of mind... This person put all us AMCers in the same bag as if AMC had only one way to be treated and there weren't 400+ types of it.
It is really easy to judge when you are not in someone else´s shoes, right?

Well, I'm not here to bitch and moan about that post, I am here to share with you how I move around in the present and my own journey on how my power-manual wheelchairs & canes have helped with my freedom.

Like many AMCers I started walking with braces, my shiny lovely things that not only helped me be the coolest kid in kinder but also gave me the support my legs needed.
I used them until I was 7 years old. 

After them I didn't use any kind of aid to walk, my legs were getting stronger and stronger and by age 11 I was not only walking around for blocks and blocks but also dancing "all night long" in my first parties.

After this I enjoyed many years of freedom, I not only achieved doing my personal daily things but, I had a very active life with a very active able-bodied group of friends. I went to school, did stairs and all kind of surfaces, had a lot or a few (depends on your point of view) falls, but I kept going.

Around age 22 I was at my best, living abroad, in my own apartment, walking long distances without a problem, but it all soon changed. Around 24 I started having very bad pains in my knees, and that kept me from walking the same distances I used to, I didn´t want to do much. I, a very active person, was passing on invitations to parties, stopped wondering around when I traveled, I honestly didn't want to leave the block or even the comfort of my house. 
I was in such pain that guess what? My aching body was forcing my active personality into laziness. 
Then something happened, due to those pains I had a surgery to shorten a tendon around my knee to give it more support. I was in a rented wheelchair during my recovery, that lasted around 6 months like any other of my recoveries while I relearned to walk.
 When I went back to my normal and I was supposed to return the wheelchair, it didn´t happen. I kept the chair, I excused myself saying things like: "I didn't have the time to go and return it". But honestly, I was enjoying so much the freedom that said chair was giving me back. I could keep up with my day to day to day chores, I could keep up with my social life, I could keep up with life in general. I would walk when I wanted to and sit when I needed to. And after 6 years of having a rented wheelchair ( because I refused to admit that I needed to have one permanently) my mom did what she does best and made a decision for me and my body, and my 30th birthday present from her was my first ever wheelchair. 

It all went from there, a few years later my mother in law made me try a cane and bought it for me, my lovely present not only helped me when I was walking alone to have more stability and reduced my falls, it helped me with stairs that didn't have railings and also made me look like a rock star as it was a super cool cane! 
I now own three canes that I use for when I travel alone or have a painful day, an AWESOME  power wheelchair that I use for long walks like any other person would use a bike and a manual wheelchair that I use when it´s difficult to transport the power one... Oh yeah, and let's not forget every now a then I jump on other peoples mobility aids when all the above fails.



As you can see making the decision of using different aids in my daily life has made me far from lazy, I can keep up with life, I can be independent in my own way, and my decisions are based on my mood rather than how my body is feeling. 
Using aids has not made me more disabled, au contraire, it has made me more abled. I can now jump in my power wheelchair and "walk" through a park on way to a work meeting instead of having to take a taxi or drive, it has given me the opportunity to use my cane on steps that don´t have railings and do so without the worry of falling down and breaking a leg (as has happened twice before), it has given me the opportunity of enjoying the cities I visit without worrying about walking distances and having to miss something I really want to see because my body cant keep up with my mind, It has given me the opportunity of using a chair on boring Saturday food shopping trip so I can enjoy my pain free legs on my Saturday night out with friends.

So... I´m not going to tell you to make the decision to put your kid in a chair or not. I'm just showing you that if you decide to, your kid could have an amazingly independent life, as much as if you keep him/her away from them. Whatever works for your kid is the best you can do for them. Just follow your heart.  

Tuesday, August 22, 2017

The person I needed while growing up


As many of you know, until a few years ago my only relationship with Arthrogryposis was that I had it. Nothing else, no support groups, no blog, I didn´t even know how to pronounce it properly (honestly), but life being life took me on the roller coaster now called "Misha Dream Walker".
I felt life had given me so much I had to give back in any way I could.

While growing up, I had amazing people shaping my charterer and influencing my spirit, I had such powerful people around me, that it didn´t even cross my mind that I would not achieve something because of my disability.
 Nowadays kids are very lucky they just jump into a computer and they have these great examples of people that are just like them doing all these amazing things, and not just that, you can go to social media and with one # (hashtag) find pages like #yoocandoanything (https://yoocanfind.com/) portraying this amazing disabled people - all in one place- doing all sorts of things, from modeling to winning medals at the Olympics.

To me this is just plain wonderful, it was different story when I was kid, my empowerment had to come from other sources very carefully chosen, as many might not have understood that I didn´t want to hear the someday I was going to be included and get invited to the birthday party, that some day I will find a job that helped me pay my bills, that some day someone truly special will come along a love me just because it takes someone very wonderful to love someone like me, that one day I will have few friends who would love my company and will be just like me.
One day I would settle and have a comfortable life.

But... I never wanted , nor needed, to hear those things.
I needed someone to come a tell me that I was going to be invited to the birthday party because I´m a cool person to hang out with, I need to hear that with hard work I could be anything I wanted, even that lady that travels the world for a living and that it will bring me many more joys than just paying my bills, I needed to hear that I should go for my crush, and that I could be loved by anyone I set my heart onto, just to go for it, because I was worthy of love and anyone could fall in love with me (yes, like anyone else), I wanted to hear that I would have as many friends as I wanted to and be envolved in different groups accordingly to my interests.
I needed and wanted that, and that is why I why surrounded myself with people who believed in me.

Now I just want to be that person I needed while growing up, I want to tell AND show kids ( and everyone really) that you shouldn´t settle, that you should always fight for what you want and dream about, because no dream is too big and you were put in this world to be special and meaningful, I want to tell you that your life matters and you make a difference so please please please don´t ever settle for less than your own greatness.

Today, 5 years after starting this wonderful journey, I just want to be the person I needed while growing up. 

Friday, March 3, 2017

Inspirational? Why not?











For a few years now, I´ve been hearing the ¨ I’m not your inspiration¨ in some disability stories, and even though I fully respect everyone’s opinion about the matter, I would like to share my point of view.

I was lucky enough to be born in a family that never treated me differently just because of my disability, the ¨normal¨ things were always expected from me, there was no doubt in my mind that I would have to make it to the classroom before the bell rang, my slow walk was never an excuse. I knew that I was going to be asked to prom, not because it was the nice thing to do but, because I was a fun girl to take with you and yes I was asked to several proms. The fact that I would go to university was never questioned, I would learn how to deal with any of the struggles that the student life might bring. Getting married never worried me because of my disability, if I ever thought that I might not get married it was due to the fact that I didn´t know if I was going to find the person that I wanted to spend my life with, not because I didn´t feel worthy of someone. 
The thought of ¨I should be treated in a special way just because of my disability¨ was never there.

I grew up believing that I was capable enough like everybody else to make a difference.  So, I go around life just being me, living a normal life in my differently abled body, and if someone finds inspiration in me, the things I do and in the way I do them… MARVELOUS! This world is so in need of love, example and inspiration that why would I take it the wrong way? Like my friend Keira says ¨Embrace the impact you have in this world¨.  And what better impact than inspiring someone? You don´t know their background or what is going on in their lives, sometimes just the simple existence of something or someone can change someone lives for the better, who am I to tell someone that they can´t be inspired by me or anything for that matter, is not up to us to decide what inspires someone. They will take, from life in general, what they need to grow as person and to help them achieve what they want the most, and if I - and my disability- happen to be one of the things that inspired them on that moment GREAT, I can´t go around life thinking or expecting not to have an impact, that is impossible, everything does.

In this crazy world of disability, we have to fight many battles, why fight something that has a positive impact on someone?  Why take it the wrong way? I´m sure every person that has ever come to me said that I was inspiring to them really meant it from the bottom of their heart and it fills my soul that somehow, just with me being me, I inspired someone.