Find Something to Care About

Nov Ivana  Before getting involved with Muscular Dystrophy Canada, I spent a year volunteering with the Canadian Cancer Society. I have heard stories, and met individuals that have truly inspired me to push, and fight harder. Just like MD, cancer has many problems with no solutions; answers, but no short cuts. There are a lot times where you find yourself frustrated, and emotionally challenged. There seems to be too many obstacles to overcome, bridges to build, and barriers can be found around every corner – but sometimes within the midst of all that, you find something that makes it all worth it.

The world has proven itself to be full of unexpected twists, and turns. What is important is that we never stop believing, and we never forget the things that are worth holding onto. Mastin Kipp said it the best, “Being of service, and taking the wounds of your life and turning them into lessons, and sharing your experience with others will do more good to you and the world than almost anything else.” I have learned that having an illness is in no way a weakness or means that I am failing. You want to know the biggest reason people fail? The biggest reason goals don’t get accomplished? It is not because they aren’t smart enough, or pretty enough, or strong enough – it is because people make excuses, and sometimes they don’t even start to try. Sometimes you start, but then you just stop. Distractions get in the way, and one day becomes one week, and then one week becomes one month, then a year… then before you know it your life has gone by. There are endless opportunities, and rather than taking them, we like to stay comfortable. Can I blame you? Who doesn’t like being comfortable? Being uncomfortable causes us to feel nervous and anxious, however, being comfortable means you’re not reaching your highest potential.

After taking that year with the Canadian Cancer Society, learning everything I could, I felt like I had a fighting chance for the first time to battle my own illness. I saw what drives people, what pushes them, what inspires them, and what gets them involved. The answer is not sitting back, and expecting results to happen. I have no idea where I will go with creating awareness or fundraising for LGMD2A, but I believe I found my first step. Coalition for Calpain 3 is an organization founded in 2010 and its purpose is to find a cure for LGMD2A. Both founders have this progressive disease, and share the same goal as I do in ending this disease. If you want to check it out please use this link: (http://www.curecalpain3.org/). Use your resources, and most importantly, use your potential. If we want to see an end to this disease, it starts with us.

We can’t plan everything that happens in life. We win some, and we lose some. That is just the way it goes. As I sit here I hope my words empower you to not stay in the state of suffering if you are. I know life isn’t fair sometimes, but you must risk failure, you must risk losing, you must risk everything all your life if you want to achieve anything. LGMD2A is one of the easiest MD to cure, and this fact alone makes me believe that if we all do something, progress will happen. I believe that we all have to step up, and do something about this disease not just for ourselves, but also for each other. If we all helped to create something, amazing things can happen. I hope after reading this you donate your time, efforts, and energy towards a cause much greater than yourself. I hope you create a powerful message to the world, and I hope whenever you find what you are looking for, you live within it.

You can dream as big as you want. There are so many quotes I come across on a daily basis about dreaming big, and doing what you are afraid of. No, I do not mean saying hello to that big spider on the floor kind of doing what you are afraid of – I am talking about being afraid of the possibility of failure, and even the possibility of success. The fear of trying.

This is me pushing you, this is saying that you have the potential to turn your life around. Here is your chance. Individuals who are the best at what they do are the ones who have gone out of their way to do more than what is required of them. Maybe that means getting up, and working towards your goal(s) while everyone else is still sleeping. Maybe that means feeling short term pain for long term gain. Maybe it means standing tall when everyone else is laughing, and telling you it isn’t possible. There are reachable goals out there, pursue them. What you are going to do each and every day is what makes your year, your being, and your life. What you do does matter. Your life is your life. All I ask is that you make the most of it, that you create your own path and that you enjoy every second.

“When you are inspired by some great purpose, some extraordinary project, all your thoughts break their bonds: Your mind transcends limitations, your consciousness expands in every direction, and you find yourself in a new, great, and wonderful world. Dormant forces, faculties and talents become alive, and you discover yourself to be a greater person by far than you ever dreamed yourself to be.”         – Patanjali

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Ivana was born in Sanski Most, Bosnia & Herzegovina, but moved to Canada at the age of three. She was diagnosed with LGMD a few years ago, and it has forever changed her life/ She is a regular contributor, and her blogs will be everything she has learned along the way, and what she continues to learn today.

Make it happen

Ivana October blogExercising and eating healthy is easier said than done, especially after a long day at work/school or when a few too many macaroons are calling your name. I never had the desire to go to the gym or worry about what I was eating until after I was diagnosed.

Even before my diagnosis was confirmed, my doctor gave me a Pilates DVD and told me to exercise every day for three months and come back to him with how I was doing. I found that some of the exercises I could not do well even after three months, and some I had improved on in the time period. This is when it all began. When my diagnosis was confirmed, I had become so much more grateful for all that I had. I had one chance to live the best and most fulfilling life I could despite the curve balls thrown at me.

When you run into an obstacle you have to overcome it as best as you can. Do not let it destroy you. Sometimes you will work really hard and somehow still fail. This is life. But your character, as I mentioned before, is defined by how you stand in the midst of defeat than in victory. Know when this moment comes, that you should never give up. Bernard Baruch could not have said it better, “the art of living lies less in eliminating our troubles than in growing with them.”

To stay healthy I do a mixture of both eating healthy and exercising. I have a few apps and DVDs that I use when I exercise at home. Walking is also a great way to maintain your muscles for as long as you can. Anytime I can take a few extra steps, I will. Parking a few stalls down or taking the long way will add up. I recently tried out a step counter which also encourages me to take more steps. What I try and do every day is a mixture of Pilates and Yoga. There are so many different exercises you can find and I know there are plenty that are not high endurance but still have a high impact on your body. So try it out! If you’re unsure about what exercises to do or what areas to work on, physiotherapy is also great!

In time, your body will change as everyone’s does. But I can guarantee you that doing something is a much bigger change. Do not wait for time to change everything. Yes, after a diagnosis I was thinking more along the lines of, “I only live once, I have this one life and I have to make the most of it.” But in reality, that is not entirely true. This one life is not all you have, in truth, you don’t only live once, you live every day. So decide that you have the power to not only make the best of the situation, but actually make a better life for yourself because of it. I know everyone’s body is different, so it’s up to you to find your balance and what works best for you. If you have any tips to add to mine, leave a comment! I’d love to see how you are maintaining your health after a diagnosis.

Never Lose Hope

Ivana-blog AugustThere are no guarantees or promises in life. We never know what is next; it is all a guessing game. One minute you are on top of the world, rising above all else. The next, you are at the bottom, struggling to pick yourself up. Life is tough. It is no secret that you will stumble and fall down. Everything changes. Life is full of change and to exist, it is inevitable. If there is one thing I want you to remember it is this: Never lose hope. Life is going to try and push you into many directions and it is normal to want to go down in the hole if you feel defeated. But your strength is not going to be measured by the impact of all your hardships in life, but the refusal to allow these hardships to dictate who you become. You and you alone are responsible for your own life; nothing else is or ever can be.

In the dictionary, hope is defined as, “the feeling that what is wanted can be had or that events will turn out for the best.” If you want something in your life, I think you have to believe in yourself, even when nobody else does. What I have learned through business school and in life, is that sometimes it is failure that will push you harder and farther than success ever can. Sometimes, it is not the happy moments and accomplishments that explain how a person got to be where and who they are. Sometimes, I think it’s the things they tried to do and couldn’t do. The things they’re still struggling to do. If you read biographies of some of the most accomplished individuals, you will find that they had a desire for change, for something to happen. They faced obstacles and challenges and instead of staying where they were and being frustrated with the circumstances, they took a risk and believed in themselves. These are the ones that have known defeat, known struggle, known loss, but somehow found their way. This does not just happen. You have to be willing to fight against the odds and not be shackled by fear or insecurity or doubt.

Never losing hope can be applied to almost any aspect of your life. Whether it’s getting accepted into University, finding a job, finding yourself, or waiting for a better day to come. This is when you find out exactly what you are made of, what you’re capable of. If life did not test us, how would we ever be able to define our character? You may fail more often than you win and it’s up to you to overcome the difficult, the mean, the unfair. Do not let difficulties cripple your life. Whatever you want to accomplish, no matter how many doubts you hear, do it. A diagnosis cannot stop you. It may slow you down, but you can do this, do it for yourself. Prove it to yourself. See where it takes you. What’s inside of you cannot be stopped. Don’t lose hope in yourself.

Ivana was born in Sanski Most, Bosnia & Herzegovina but moved to Canada at the age of 3. She was diagnosed with LGMD a few years ago and it has forever changed her life.  She is a regular contributor and her blogs will be everything she has learned along the way and what she continues to learn today.

You can turn it around

Ivana blog-heart signAfter being diagnosed I remember my mind racing and feeling lost. I had built my life into one large plan, everything being somewhat expected. I made plans to go to school, to travel, get married, have kids… I have to laugh at that now, because yes we live for what is expected but what changes our lives is what is unexpected. And it takes one thing- one small fraction of time, to change your course completely. There was a lot I went through in between then and now. Overall, I had four stages I went through. It started in slow motion as I watched everything I took for granted slip through my fingers and ended when I saw a light at the end of the tunnel.

The first stage I went through was denial. I didn’t want it to be true. It couldn’t possibly; out of the billions of people out there, why me? I ignored what my body was doing; I went on like nothing happened, like it was not affecting me.
The second stage was anger. You’re angry with your family, your friends, strangers who look at you on the street, and even angry with yourself. It felt like I had entered a battle that I was not prepared for, one that I did not want to fight.
The third stage was bargaining. I prayed that it would go away, that I would never do a bad thing again; I took back all the awful things I had done and said previously. I offered everything I had in hopes it was enough.
Then, the final stage happens when everything else has failed. All the anger has subsided, the bargaining has failed and you’re left to think about your feelings. So the fourth stage can be nothing else but acceptance. You accept that you did everything you could and let go.
Throughout our lives, many of us will face circumstances that seem unfair, painful, and traumatic. And, in the moment, that is true. But as we grow and evolve, we get to see that once we accept what happened, we have the power of choice to be able to redefine the meaning of it- to turn it around. There is always something to be found in what we have lost. The goal isn’t to ignore what is happening to you, it’s to become strong enough to live and eventually thrive through it.
Sometimes the reality of life is a hard pill to swallow. We don’t want to experience the bad or go through the hardships we are brought to. But I would not have it any other way. I guess I had to go through those stages, to lose myself in them, so I could finally find out who I was. Yes, in the beginning I realized that I may have lost something, but in the end, I knew that I had not lost everything.

Ivana was born in Sanski Most, Bosnia & Herzegovina but moved to Canada at the age of 3. She was diagnosed with LGMD a few years ago and it has forever changed her life.  She is a regular contributor and her blogs will be everything she has learned along the way and what she continues to learn today.

Work in progress

take oneFinding a job can be difficult for just about anyone. When I first started university I thought all I had to worry about was maintaining a high GPA and all good things would follow (was I ever wrong). So now a recent graduate, I have the fun of experiencing job hunting in a very competitive time where baby boomers just won’t quit and graduates are running over each other for great opportunities.

I live in a small city and most of the buildings are very old, which means accessibility is hard to find. So that limits where I can apply. When you have a disability, there are things you look out for that nobody else has to worry about. For example, is the building accessible? Is there parking close by? A job description is never going to say, “Must be able to climb stairs” because it is just assumed everyone can. So you need to do your research and ask the hard questions. You have to be comfortable where you work and everyone needs to understand your limitations. If they don’t, that is their loss not yours.

In conclusion, I am still learning about what to do when looking for a job with a disability. I would say do not let the word “disability” stop you from taking an opportunity you know you can do. Nobody is perfect and for better or worse, I know LGMD is with me all the time. But so what? Use your strength to do bold things, and not suffer. If you want something in life, don’t be afraid.

My advice would be to never be defeated by anything or anyone. By now I have probably been rejected over a hundred times and if anything, I have grown and learned from it. Do not let the things you cannot do get in the way of things you can do. Always stay true to yourself and never let what somebody says distract you from your goals. I hear negative and false attacks all the time; someone is always telling me what I can’t do. But what they don’t realise is that it makes me fight that much harder. You will see that obstacles do not have half the strength that you have. Everything is possible for the individual who refuses to stop fighting, and honestly, strength has nothing to do with physical capacity. Take some risks, life is too short to play in the safe zone and never fear failure or rejection. You will be defined not by how you sit in comfort, but how you stand in times of challenge. Knowing is better than wondering and even the biggest failure is better than never trying.  And what matters the most is that you never stop- no matter how slowly you are going.

I’ll leave you with one of my favourite quotes by Brian Tracy, “Between you and every goal that you wish to achieve, there is a series of obstacles and the bigger the goal, the bigger the obstacles. Your decision to be, have, and do something out of the ordinary entails facing difficulties and challenges that are out of the ordinary as well. Sometimes your greatest asset is simply your ability to stay with it longer than anyone else.”

Ivana was born in Sanski Most, Bosnia & Herzegovina but moved to Canada at the age of 3. She was diagnosed with LGMD a few years ago and it has forever changed her life.  She is a regular contributor and her blogs will be everything she has learned along the way and what she continues to learn today.

On Your Way: Saskatchewan Youth Conference

On Your Way Saskatchewan 2013-group photoOn Your Way is a youth conference for persons with physical disabilities who live in Saskatchewan. It grew out of a dream from the neuromuscular clinic staff who partnered with Muscular Dystrophy Canada and Canadian Paraplegic Association and recognized very little is very available in the province of Saskatchewan for youth and families to assist in transition planning following discharge from clinic and graduation from high school.

On Your way Saskatchewan 2013-Mom and Max23 youth along with their families joined together on May 23rd and 24th for sessions involving Post-secondary and vocational planning/preparation, Self advocacy, Government of Saskatchewan initiatives, as well as parents-only sessions focusing on parenting and transitioning your youth, advocating for your child, issues and topics of  persons with disabilities, and relationships and parenting.

On Your Way Saskatchewan 2013-Luca and friendsConference participants welcomed Luca Patuelli for his inspiring message of “everyone can dance.”   Social and recreation activities including a dance party allowed youth and families opportunities to connect with one another. This very successful conference wrapped up with a  wheelchair basketball session provided by Saskatchewan Association of Wheelchair sports. Participants were joined by the Saskatoon Firefighters.  This conference was made possible by the funding of Community Initiatives Fund. Check out the video which captures the learning, fun and community building that participants enjoyed during the conference:On Your Way - Sask Conference Video screengrab

Learning Indirectly

tumblr_loytmwLVsY1qm37rzo1_500There are always ways you learn things; it can be through a book, a teacher, by following the steps of a role model, or by making a mistake. The list is endless. What I never thought is how learning indirectly taught me more than I ever thought possible. Learning indirectly simply means learning when failure happens or when things don’t work out the way you wanted them to. The fact of life is most of what you are going to learn will be indirectly. After being diagnosed, you may also go through vulnerability as you try and understand this new information and create a new identity for yourself. You need to confront this new reality and there is no book, no guidelines to show you how to go on.

It is completely wrong to think that after a diagnosis your life will not change and it shouldn’t be difficult to adapt to. That knowledge isn’t even easy to accept. The recognition of that reality itself is hard. There is uncertainty in all of life. Events occur and we have no control and no warning. The uncertainly of the future has me asking questions like- what will happen to me? Will I be able to walk in five years? Ten years? Uncertainty about the future will not go away but over time, you learn to come to terms with it.

It’s not all a sad story though, and really I am not sure it ever really was. My diagnosis has forced me to look at the fragility of life and pay attention to things in life I never noticed before. I also learned not to waste my energy on things that don’t really matter. So all in all, I am not the way I once had been. But that’s okay, because learning indirectly made me realize how powerful I am.

Meet the “Let’s Make Muscles Move” blog’s new contributor:

I volunteer!My name is Ivana and I was born in Sanski Most, Bosnia & Herzegovina but moved to Canada at the age of 3. I was diagnosed with LGMD a few years ago and it has forever changed my life.

I know that after being diagnosed my family were probably thinking that this disease would slow me down and I had doubts that it might as well. But if your strong, you can push even harder than you did before. So I made the choice to keep fighting and I took the hardest road in hopes it would guild me to something I never thought possible. So instead of asking why I was given this life, I understand that ordinary wasn’t good enough for me. In my heart, I know that I was meant for something greater.

        After graduating high school I went to post-secondary and got a degree in Finance and General Business. I chose to do Commerce as opposed to a Arts (despite my love for writing) because I knew it would be the most challenging bust most rewarding degree. I came to realize early on that business has this amazing power to transform society and create prosperity in a number of ways. It was the hardest and best decision I have made to date.

        My blogs will be everything I have learned along the way and what I continue to learn today. It will teach you my biggest lessons, what inspired me, and some mistakes. I hope you enjoy reading them as much as I enjoy writing them.