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.

Saturday, February 25, 2017

Everything is a blessing


In the last few months my beliefs about how I feel about my condition have been questioned one time too many, not many things bother me but, this topic is one of the few that make my blood boil. I feel that life has thrown many battles my way, why do I have to explain this one over and over? Why is it so difficult for some people to understand that some of us wouldn´t change the way we look, the life that was given to us or the hardships?

Why would I give up anything that Arthrogryposis has taught me? From a young age, I learnt where hard work could take me, that pain will be present but, I´m stronger that it will ever be, that every tiny victory counts and must be celebrated, and that life will have difficult moments so we can enjoy the happy ones.

Many won´t understand what I mean because they haven´t been in my shoes, and maybe they just focus on my struggles. Yes, I do suffer a great amount of pain. Yes, I struggle doing my daily tasks and it might take me way longer than to an ¨abled-body person¨. Yes, I have to work twice or hundred times harder physically to achieve any physical activity. Yes, I get the awkward stare more often than not. But, all of these struggles have strengthened my spirit, I don´t take anything for granted, I enjoy the good every day so the bad can be overshadowed and I have learned to love my body just the way it is and the way it moves, it took me too much pain to get where it is now and to be formed to its ¨now¨ shape for me not give it all my love.

To give up on AMC will be like giving up on the person that I am today. Every treatment, every tear, every struggle, every victory, every moment shared with my mother throughout the treatments, every doctor, nurse, physiotherapist, every person I met along the journey this condition took me on, have shaped my body and my soul. So, if anyone thinks that I could ever give up on even one second with AMC, they think I could give up on me. And that, my friends, in my book, is a thing I would never do.

This goes to everyone, not just AMCers, please learn to love your life, I know it gets difficult and painful but, the more you accept and embrace who you are and your journey, the more you will enjoy it. Life is about celebrating it, the normal day, the morning shower, the wonderful vacation, the lunch at home, the crazy night out, the sunny day, the rainy day; EVERYTHING is a blessing, and so are you, I and my AMC. 

Monday, February 20, 2017

Dream Walker (by Misha Walker)

After almost five years, Misha Against the odds has evolved. I started the blog as a space to write about my life with Anthrogryposis Multiplex Congenita (AMC). This journey has taken me where I never imagined it would. So many places, so many homes, and so many families that I now feel a part of.
This has been the journey of a dreamer, which started one afternoon in a living room that no longer exists, literally, not knowing what was coming my way. I just wanted to tell people that it was ok to be different, that it was ok to have a disability and that being different didn’t have to be bad.
My dream took me to stand in marvelous places and to share my story with many that needed it. This dream helped me grow as a person and pushed me to dream even bigger than I already did, being inspired by the people and stories I found along the way.
This Misha didn’t want to go against the odds anymore, as I learnt that the odds don’t mean anything, they are not real, they don’t work for the dreamers. Dreamers go beyond the odds, dreamers create their own realities, and my life has proven that I am a huge dreamer. When I was born, doctors said I wouldn’t walk or move a finger, little did they know that I was going to be a big dreamer that made things happen and that I would walk around life proving wrong every word they had for me.
Today is the day that that journey transforms into something bigger, a journey that invites us all to take part and create our own realities, a journey where we walk together into wonderful things that we make happen, today is the day that I invite you to join me as a DREAM WALKER. 
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Después de casi cinco años, Misha Against The Odds (Misha contra las probabilidades) ha evolucionado. Comencé el blog como un espacio para escribir sobre mi vida con AMC. Este viaje me ha llevado donde nunca imaginé que lo haría. Tantos lugares, tantos hogares, y tantas familias de las que ahora me siento parte.

Este ha sido el viaje de una soñadora, que comenzó una tarde en una sala de estar que ya no existe, literalmente, sin saber lo que vendría después. Sólo quería decirle a la gente que estaba bien ser diferente, que estaba bien tener una discapacidad y que ser diferente no tenía que ser malo.

Mi sueño me llevó a lugares maravillosos a compartir mi historia con muchos que la necesitaban. Este sueño me ayudó a crecer como persona y me empujó a soñar incluso más grande, inspirándome en las personas y las historias que encontré en el camino.

Esta Misha ya no quiere ir en contra de las probabilidades, aprendí que las probabilidades no significan nada, no son reales, no funcionan para los soñadores. Los soñadores van más allá de las probabilidades, los soñadores crean sus propias realidades, y mi vida ha demostrado que soy una gran soñadora. Cuando nací, los doctores dijeron que no iba a caminar o mover un dedo, poco sabían que iba a ser una gran soñadora que iba a hacer que las cosas pasaran y que caminaría por la vida probando que cada palabra que tenían para mí era errada.
Hoy es el día en que ese viaje se transforma en algo más grande, un viaje que nos invita a todos a participar y crear nuestras propias realidades, un viaje donde caminamos juntos hacia cosas maravillosas que haremos realidad, hoy es el día que los invito a caminar juntos como un DREAM WALKER (Caminante de sueños).


Monday, January 30, 2017

Yes, You can!

After the last blog post I did my homework, yes, what I wrote was for me as well. 
Since I started the blog I want you to know that I have been as honest as I can with all of you, when something goes wrong, I share. When something goes right, I share. When I´m not so sure about something. I also share. So this way, my journey is yours and if what I go through helps you in any way my life in this world is fulfilling its mission. 
So, going back to the beginning in the last few weeks I listened to what my heart, mind and soul were telling me, I connected the dots between all those things and finally set my intentions for this year and here they are:
 
⭐ YES, I CAN!

My first and most important intention for this year is to remember that in fact, YES, I CAN!  I can do everything and anything that I set my mind up to. 
Sometimes, life, the world, failure, fear or people around us, make us think that we can´t do/achieve something, and to let those negative thoughts get in your head is the biggest mistake you can make. WHAT YOU THINK BECOMES YOUR REALITY! So, fill your head with dreams, positive thoughts and affirmations that get you where you want to be, and that way YES, you will!

     ⭐ RECOVER MY BODY

One thing that has been in the back of my mind for the last three years is how my body ability is fading away from me, I seem to be able to do less and less things that I used to do with hardly any trouble. In those three years I have tried different things that I honestly thought would work, like losing weight, doing physio, walking more, being aware of my disability and what my body is trying to tell me. I really felt heartbroken when none of those things seemed to work.
Until the other day, someone asked me when was the best moment for my body, and without giving it much thought I just gave the ages were I thought my body was at its best. Then over the next few days that question kept coming back to me and those years when my body felt at its best where in my mind all day. Something bigger had to come out that question, so, I gave it a real thought, ¨What made those years the best years for my ability and what did they had in common?¨ Then and there was the answer to the question that had being bordering me for the last 3 years… I try it all yes but, I didn't do it all at the same time.   Like someone told me once, I, and all AMCers, should remember that our bodies are a work of art, that all things that we are able to do, took a long time to achieve and it was accumulation of various things that were done right. The right state of mind, the weight, the physio, the constant doctor checkups, the right shoes, etc. 
So, I have come up, with the formula that worked for my body that I didn't know I had all along and I am determined to recover my body and dust off the work of art that my ability and body are.

      BUILD BRIDGES FOR AMC

When I was 28 years old, I met for the first time someone with AMC, when I walked into this community called the AMC Support Group (AMCSI), and got so many answers about my condition that I didn't even know I had, a dream/mission filled my soul with hope that what I was getting/feeling/experiencing was going to be felt by everyone affected by AMC.
The last 5 years of my life I have dedicated hundreds of days and hard work to turn this dream into a reality, I have made connections, I have looked for people with the condition that thought were alone and showed them that, not only they are not alone but, they also have a big family that is willing to help. 
Now, I want that every single person with AMC to have a chance, I want us to be a world family that have the support and the right treatments whether you are in Africa, Peru or the USA, I want to build these bridges just for one reason, alone we are rare, together we are strong.

     ⭐ TAKE THE BLOG TO THE NEXT LEVEL

When I started the blog, I did it for my friends and family to learn a bit more of the condition that I live with. Not in my wildest dreams I thought where this magical journey called Misha Against The Odds was going to take me. The blog is read by thousands of people that are affected by AMC around the world, for me to know all of you are here reading this fills my heart with joy and makes me want to take this even further. I want this for you, for me, for the kids that are about to be born with this rare condition that has so much potential with the right treatments.
I´m tired of hearing ¨The doctor said there is nothing to be done¨, ¨The doctor said it was better to terminate the pregnancy¨, ¨My son was bullied at school¨, etc. I'm done with that. I want everyone to know about ARTHROGRYPOSIS MULTIPLEX CONGENITA. I want to go to a doctor and to not have to explain my condition to him, I want a mother to get the right diagnosis and treatment from day one, I want every kid to be cheered by the fact that he/she was stronger than AMC and even if he/she does things differently, he/she is able to do them and not get bullied for it. For that, I will stand up in every corner of the world to tell my story and let everyone know that to have AMC doesn't mean you won’t do this or that, it just means it will take more effort but, YES, YOU CAN!                                                                                                                                                                           

Sunday, January 15, 2017

Forget resolutions, set intentions.

As we are now two weeks into the year, I thought I would finally write about the one just gone and the one that just started.
You see, normally I am the most positive person about everything, and when the new year approaches I tend to go extra positive and want lots things to happen and I have dozens of new year resolutions, just because is the perfect time to set them. The magic of Christmas is all around, the celebrations, the family and friend reunions are the perfect distraction to take you away from what you really need or want, and might make you wish for something that is not for you or something simply too crazy…  For example, this Christmas was so magical I wanted to be a Unicorn, literally. As the saying says: ALWAYS BE YOURSELF, UNLESS YOU CAN BE A UNICORN, THEN ALWAYS BE A UNICORN. But, is obviously not what I need, I’m perfect the way I am, lol.

2016 has been a year that taught me so much, I lost so many loved ones, life took me for a spin throwing me out, not only from my comfort zone, but also out my senses. It forced me to create new ones by rocking my world, I had to learn who I was again and make sure I knew what it was that I wanted. It wasn’t a conformable ride but, on balance at the end of the year, it was a good one. In a year where every single moment you were thinking OMG! REALLY? At some point I had to realize that life was telling me something.

So, beginning this year I have new ritual, I welcomed the new year just enjoying the moment, laughing, cheering, and dancing the first few minutes away. The next morning I just let day happen as it came, no big expectations. Have you realized that often the first of January is a wasted day? People tend to wake up late, feeling tired from the celebrations from the night before. What happens next? Disappointment. The first of January was the day that you set your goals to start exercising, quit smoking, eating better, seeing more family, having better attitude, etc. But, to be honest, who wants to do all that after a big night? Not many people I bet.  So, for me, year after year I started feeling a bit blue and let down, what a wrong way to start the year. I honestly think that that is exactly why only 8% of the people achieve their New Year resolutions.

  So, from this year I will set my intentions after all the excitement of the holidays has past and I´m centered and truly aware of what is that I want and need. All of these past weeks I´ve had ideas, thoughts and feeling coming back to me. So, I wrote them down, all of these desires my mind, soul and heart had, are now being processed, I’m paying real attention to each of them and carefully planning when is the best time to start working on each of them, I know for a fact that everything is achievable, you just need a plan and dedicate time and work towards it.

If you are like me in previous years, and went all excited about the new year and set so many new year resolutions that now you can´t even remember them, and you are already feeling a bit discourage or have given up on your plans, hold your horses you´re still in the race, get your head together, get a note book – phone – chalkboard – whatever works for you, and start writing your goals/desires/wishes/Wildest Dreams down, every single one of them, go big or go home, then pay attention and you will see that what is truly important to you will jump out, then GO FOR IT, give it your all.

I will be writing about my goals soon, and share with all of you how I´m doing  and what is working for me, I think we can empower each other, so please share with me how you are doing and what is working for you. 

Let’s work hard together and make this 2017 the year that we make amazing things happen for every single one of us… Are you in?

Wednesday, December 14, 2016

Raising a disabled child, the important role of a parent.

I´ve been meaning to write about this for sometime now, whenever my mind went into looking for the right words to try to explain something as crucial as this, the politically correct Misha in me whispered in the back of my mind ¨You can't tell a parent how to raise their children!!!¨  and, yes, she is right I can't, but what I can do is tell you what worked for me, so here I go...
I wouldn´t be the person I am if it wasn't for how my mom raised me. 

You see, when I was born my mom was only 21 years old, it would have been really easy for her to listen to the medical and family opinions on how to raise me, but she knew better, she heard and paid lots of attention to her intuition, and she did well.
She knew that all my tears, pain, and uncomfortableness at the end were going to pay off, but she also knew that what I needed was much more than the Physio, the surgeries and the many posture correcting devices, my character was the one thing she had to work on the most. 

So she started, I have no memory of this but, people tell me that when I was a baby, the kids will surround me in the park and just stared at me, a young mom might have covered their baby just in order to avoid all the fuss of having to explain a 3 year old boy why did her daughter looked the way she did but, she didn't.  This was very clever on her part, from the beginning I was getting used to the ¨awkward¨ stares, now I just call it attention and I still get lots of it, but because my mom put me through those moments from an early age, they are just part of life, no hard feelings here.

She continued, this wonderful journey by allowing me to take myself to the limit, if by age 8 I was ready to hang out with my older brother  and his friends well, she wouldn´t say no, maybe a traditional parent wouldn't have allowed it as they were all boys going into their teenage years and they did some crazy stuff, but in my mom´s head, this was going build my character up and I was going to put my body to the limit in order to keep up with them. So most of all, I learned how to fall down, imagine me jumping from a bunk bed pretending I was super man, yup! it didn't end up well but, it makes one hell of a story and I proved everyone that my body was stronger than they thought (no broken bones, luckily).

By age 11 I was a professional faller but, I needed so much more that knowing how to fall down, deal with the stares and all the physio, surgeries, and posture correcting devices. So my mom, whenever one of my friends invited me to a pyjama party she didn't think twice and on my way I went.  Those moments when I had to figure out to do things on my own or to learn how to ask for help were crucial for my adult life, she wanted me to become as independent as I could be, and best way for me to learn my ways were those where I was out of my comfort zone.

Then my teenage years came, by then I already knew how to deal with the stares and all sort of ways to do things by myself, but her very successful intuition told her that I was in need of was to be told that I was more than fine being different, that what made me different made me Me and beautiful. So she did it all day every day. 

All of this made my very confident, and I knew at age 18 that I could move to a strange city by myself, the stares would be familiar, the falls wouldn´t break my adventurous spirit, I would be able to do my day to day things and if  I couldn't  I wouldn't have a problem asking for help from someone was around me, nobody would be able to make me feel less, I knew my worth and that was all that matter. I was ready to start my adult life, make my own successes and my own mistakes like any other person.

So if you ask me how important parents are in the life of a kid with any disability, my answer will be: They are the most important piece in their lives, because is up to them if their kid's life is lived to the fullest in their early years and in their adult lives.  

Monday, September 26, 2016

Dream Big

What happens when you are given a dream, and that dream  feels bonkers, unachievable or just simply out of  place, but with all that said your body can´t stop pumping you  full of adrenaline and  making you want to go for it.
In my case, being born with a condition where everyone said I would not do this or that, and then with lots of hard work I did it and proved everyone wrong, I have the power of dreaming ingrained in my bones and heart, and when I feel that adrenaline, I just want to go for it and ROAR, yes, like Katy Perry...
You see, when life gives you so much and you HAVE  to put up with it, you know you can handle anything and make what you want possible, of course, there is fear, but fear is just something there being overpowered by you, your dreams and the thought of knowing you will try it over and over, with fear, but try it nonetheless, until it's done!

I´m aware that this feeling of anything is possible as long as you dream it, is not ingrained in everyone, not everyone had to go through what I went through to learn it (luckily) but, that is why I write and share my story with you, it can be done. Experience is tough but, hell you learn, and that I did, I learned and I did.

I often say your battles are given to you for a reason, you are strong enough to fight them, well I truly believe that  the same happens with your dreams, if they were given to you it's because you are wise, strong and free enough to make them happen.
All of this will be a series of small victories and defeats, this my friend won't happen from one second to the other. it doesn't happen like that, you won't have it the next day you dreamed about it, it will take work, patience, desire, tears and one hell of a compromise but, if you really want it,  the journey will be the most beautiful thing about it, because every step you will feel closer to it and you will have a purpose and nothing will mean more to you than the path of getting there.

So, go and dream, dream big, because you can make ANYTHING happen.