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.

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!