Hi friends, welcome to another post. Continuing with my project for this year, I have another interview for your reading enjoyment. This time, we're going to hear from my brother Marcus. For those of you who don't know, I have two brothers, one older and one younger, Marcus being my older brother (by 3 years). I'm very excited for you all to read his point of view. It's the first of two posts that will show those of you who hadn't thought about how the siblings of those with disabilities might be affected too. Not going to lie, teared up reading his answers for myself. So did my mom and dad, just saying.
Marcus is incredibly hard working, funny, and an awesome big brother. To me, he seems quiet and shy, but he's also incredibly compassionate, understanding and family-oriented. When we were younger, we weren't the closest of siblings, what siblings are at that age? But now, we have a lot more in common that we used to. Together, we've shared Game of Thrones theories, traveled to watch various UFC fight, and played countless video games (some of which I won because I am a button mashing master). I love him tons and tons.
Now, before I start tearing up again, here is Marcus. Enjoy!
What was your first thought when you found out about my diagnosis?
I was a little scared at first because you would have trouble with certain things, like walking, and also because of the opportunities and activities you might lose the ability to do. I also had a sense of relief because you had an answer to some of the reasons why things were hard for you, and now had knowledge to help make things easier for yourself.
What sort of impact do you think this had on you personally?
It has helped me to be more observant and sympathetic to you and those that have less noticeable disabilities. I also think that it has helped me be more compassionate towards you, knowing the struggle you were going through.
What were you most afraid of when I was diagnosed/when you heard of my diagnosis (for you, for me, in general?)
I was afraid that you would lose the ability to walk or have kids before you were ready to do so. I also had a slight fear that I could have something similar affect me later on in life.
How has being in contact with a disability changed your perspective on disabilities?
I am much more open and aware of certain disabilities that may not necessarily show itself easily, and helps me to not be so quick to judge others. Also being more aware of my privilege of being able bodied and that not everyone has that same ability.
What surprises you most about how things have changes/how things have progressed?
The biggest surprise to me is how brave and poised you have been through all this, and the growth you have made as a person, especially with all the awareness and treatment programs you take part in to help others like yourself. As well as the fact that you still have some independence and can still do a lot of what you enjoy.
Hi friends, welcome to another post. Recently, I was listening to one of my favourite social media influencers’ new podcasts, in which she and her friend talked about something called Imposter Syndrome and their own experiences with it.
For those of you who don’t know what Imposter Syndrome is, it’s defined as a psychological pattern in which individuals doubt their accomplishments, and have an internalized fear of being exposed as a ‘fraud’. Despite having evidence of said accomplishments, those experiencing Imposter Syndrome are convinced that they are frauds and don’t deserve all they have achieved.
Imposter Syndrome can be accompanied by anxiety, stess, and/or depression. The main symptoms of Imposter Syndrome are feelings of doubt in one’s own intelligence and ability, and attributing all achievements to luck, or thinking that they have tricked others into believing they are smarter or better than they believe themselves to be.
This podcast resonated with me quite a lot, and it’s because I’ve felt the way that Sam and Alyssa have. There are times I don’t feel like I could ever be an inspiration or any sort of positive influence on everyone. I write about overcoming hardships and about being positive in spite of negativity, and I get called strong and an inspiration all the time, but it doesn’t feel like I can be that or that I am that. I’ve gotten to share my story and speak to people about my disability and achieved a lot, but I don’t feel like I deserve it.
There are times when I don’t practice what I preach. I give in to the negativity that I feel like surrounds me, as I’m getting messages and having people tell me I’m an inspiration. I feel like a fraud at times, because despite opening up and being honest with you all, I still feel like it’s not really me. I doubt myself, my real reasons for writing and sharing, and my ability to help with my words, because I feel as if I’m living a lie in a way. Granted, I have no where near the same following Sam and Alyssa do. Despite how small the corner of the world is I speak to, it still feels like I’m not completely honest to you when I tell you “this is how I stay so positive” while feeling the opposite.
It’s easy to give in to these negative thoughts. It’s easy to feel like the only reason I’m an inspiration is because of luck or because people don’t have many other options for inspiration. It’s easy to question and doubt myself for the achievements I have. What isn’t easy is telling myself that I deserve it.
Something to remind yourself when you’re feeling the doubts associated with Imposter Syndrome, that I’ve recently been reminded by my lovely sisters-in-law, is that you’re here for a reason. You matter to someone. Your achievements are yours, because you earned them and deserve them. Not because you were lucky or because you tricked people into thinking you’re smarter or better than you feel you are. You are smart and amazing and deserving.
While you don’t feel like you’re an inspiration or strong or a role model, you may be for someone. Alyssa says in this podcast “you don’t get to choose who you inspire or become a role model for” because you really don’t. If you’re putting love and positivity and goodness out in the world, there will be someone, somewhere who feels that positivity and brings it within themselves, and will put that back out into the world as well. Positivity creates more positivity.
Despite feeling at times like I don’t deserve your praise, I am grateful for it. Despite feeling like my achievements aren’t deserved, I’m grateful I’ve been given so many opportunities to share. I am so appreciative of every single one of you for giving me these opportunities and letting me share. Until next time, friends 💕
Recently, I watched the movie Breathe, which is about a man named Robin Cavendish, who contracted the polio virus. At the age of 28, he very rapidly lost his ability to breathe on his own and couldn't move his body from the neck down. He was given an initial life expectancy of 3 months, which was later extended to a year.
Now, you can probably guess that he survived much longer than that 3-12 months he was given, otherwise there wouldn't be a movie about him. And you can guess that he must have done some pretty great things. He survived for 36 years with this disability, being the longest surviving responaut in British history. He was an advocate for the freedom and mobility of those with disabilities, and helped in the creation of a wheelchair with a built in respirator, among other devices to improve the quality of life of the disabled. He was regarded as a positive person, always lending an ear to listen and give advice to those who needed it. From what I've read about him, people flocked to him because they knew how great of a listener he was.
Of course, he wasn't always a positive person when it came to his disability. In the year he spent in the hospital when he was first diagnosed, he didn't see the positive impact he and his disability could have. He asked his wife many times to just let him die, telling her she could start again at the age of 25. She wouldn't have it though, and told him he had to be alive to watch their son grow up. Getting him out of the hospital, where he was surrounded by others with the same disease and doctors who were unfeeling and uncaring was what Robin needed to feel like life could be bearable. His doctor gave him at most two weeks of life left if he left the hospital.
One of my favourite parts of the movie is when Robin goes to speak at a conference in Germany that was for doctors to discuss the best ways to care for their disabled patients. He asked them why they keep their disabled locked away in hospitals, why they can't have the freedom to live. That stuck with me, because it reminded me that not even 50 years ago, the disabled were treated as lost causes, put in the hospital until they passed on.
I recently had a conversation with another disability blogger, in which we discussed people coming to us and telling us how amazing it is that we smile despite having a disability, and what this means for us. Is it a compliment or not? It's interesting to me to see how far we've come in terms of acceptance and support for people with disabilities, from the time where we were shut away because we couldn't possibly live a functional and happy life, to where we are now and how far we still have to go. Those of us living with disabilities are not living happily despite a disability, we are living a happy life with a disability.
Disabilities are hard to live with, I can tell you that with great certainty, and it can be very hard to be happy with one. For a long time, I wasn't happy and didn't see how I could be happy with mine. But in finding acceptance in myself and of my disability, I found that I could be extremely, amazingly happy living with a disability. Because I've come to this understanding in myself, I am able to write this blog talking about my disability, I'm able to advocate for others with Muscular Dystrophy, and I'm able to try and make my small part of the world better for people with disabilities. It's because of people like Robin Cavendish, Terry Fox, and Stephen Hawking, among other amazing people, who advocate for disabilities while living with a disability, that I am in a place where I feel like I can use my voice too.
If you ever want to know the quality of life of a person with a disability, ask them. Granted, some will probably have the mentality Robin did in the beginning; that's where they are in their journey. But for most, they'll tell you that they live a great life. A wonderful, full life. Quality of life is not solely determined by one's ability to move, or even breathe, on their own. Until next time, friends 💕
Hi friends. Welcome again to a new post. So today, we're going to do something a little different. Today, as the title suggests, we're going to do an interview with my parents. I had the idea to do something like this a while ago, and what I really wanted to do is give the people surrounding a person with a disability some awareness. Disabilities don't just affect the person with it, but the people closest to them too. I have plans to do a series of interviews on my blog highlighting the perspectives of all the people who have been with me through my diagnosis and who have come into my life since. I'm using some of my newly acquired interview skills here too, so enjoy my probing questions (lol).
I wanted to start with my parents because they've been there through everything; my progression, the confusion that was my journey to diagnosis, every doctor's appointment, just everything. And it's my mom's birthday when this is posted, so obviously I need to talk about her today. Before we get into the interview, I just want to say a big thank you to my parents for taking the time to answer my questions and for sharing their thoughts and feelings so openly. I love and appreciate you both so much! So, without further adieu, here we go. I hope you enjoy it!
What was your first thought when you found out about my diagnosis?
Tami: My first thought when Meagan was diagnosed was “How the $@%# did this happen?” There was no history that I was aware of. Then my thoughts turned to "how did we miss this?" If she has had this since birth, how did we not see them? Don’t get me wrong, as she got older, we knew there was something wrong, but could never get the answers we were looking for. One doctor said it was arthritis, one said it was growing pains. When we finally found someone who took her concerns more serious, we finally got our answer. We were then hit with too many emotions to even describe.
John: Looking back, I would say my thoughts were a mixture of both relief and then sadness. Initially the relief was because we finally knew what was happening with her health and could give it a name. We could now start to understand what we were up against. Then the realization of what it was and the difficulty she would face set in. I knew this wasn’t going to be an easy road to travel.
What sort of impact do you think this had on you personally?
Tami: After finding out Meagan had MD because John and I were carriers of the gene, I was angry. I felt that she was going to have a tough life and that it was all my fault. I felt like I had sentenced my daughter to a life of pain and there wasn’t a thing I could do about it. It took a long time before I could let these feelings go. Seeing the future she was facing broke my heart and I felt like I had failed as a parent.
John: I think for me personally it forced me to open up my mind to what living with a disability meant; for the longest time I empathized with people who had disabilities but never really knew what they went through. I guess I realized my ideas were pretty superficial. The more information we got and the more we got involved with Muscular Dystrophy Canada, the more I began to understand. The littlest things we take for granted are not a given for people with disabilities. I started to realize what I take for granted on a daily basis that others cannot and I guess started to try and change that. I tried to have a better personal relationship with my wife and each of my children, I am more accepting to see them for who they are and not who I want them to be, and support them in their life decisions whatever they may be. I have learned to take life as it happens and to put expectations aside. I have learned to appreciate the things life has to offer and be content with where my life is. I think I also realized that personal relationships are more important than personal possessions or position in life.
What were you most afraid of when I was diagnosed/when you heard of my disability? (For you, for me, in general?)
Tami: The thing I was most afraid of was how Meagan was going to deal with her disability. Was she going to give up? Was she going to have the mental strength to see past this and realize it doesn’t have to define who she is as a person? I was afraid that she would never get to experience a happy life with someone who looked past her disability and saw the amazing woman she is. I was afraid the poor girl would be stuck living with us for the rest of her life!! I thank God every day for Nathan and his love and support for our daughter. I could not think of a better man to be by her side through this.
John: When she was first diagnosed, I started to try to imagine what her life was going to be like. I was afraid that her diagnosis was going to discourage her from trying to get what she wanted in life. I had watched her in similar difficult times get discouraged and regress from life; I wasn’t sure that this was something she would overcome mentally. I knew deep in her heart she just wanted all of this to go away and she could be normal.
How has being in contact with a disability changed your perspective on disabilities?
Tami: Well, seeing people park in handicapped stalls when they don’t have a permit to do so really gets on my last nerve! I notice more how people see the physical part of a disability and judge accordingly. Just because you can’t see it, doesn’t mean it isn’t there.
John: Since being more involved with people with perceived disabilities, I am constantly in awe of how people have overcome their disability and taken advantage of their strengths instead of focusing on their weaknesses. I also have observed how society in general treats people with disabilities. I would have to say I am disappointed how some people are self-focused and do not realize how their actions affect others in a negative way. Something simple like parking, or crossing the street, being in such a rush that you don’t realize the person you just pushed past is unstable or moving as fast as they can. I guess you could say I opened my eyes to what would be considered a disability and realized it could be anyone, anywhere. It shows itself in different ways and I had to open myself mentally to try and understand what they might be going through and how my actions on a daily basis might affect others.
What surprises you most about how things have changed/how things have progressed?
Tami: I am happy, not surprised, at how things have changed in just a few short years. She has found love and happiness with Nathan. She has found passion in her career choice. And she is finally contentment in her life.
John: When this began years ago, I was unsure how this would go. I tried to keep positive and tried to help Meagan keep positive as well. I can’t help but smile to see where she is. She has taken something negative and used it to gain perspective in her life and used her abilities to try and affect others in a positive way. The life path she's taken to help others is a sight to see for sure. There is nothing stronger than the power of the mind to influence an outcome in any situation, she's shown how keeping positive and looking for solutions has lead to great outcomes. I know as a parent that she has many difficulties in her life path to come, but I am very happy with how she has overcome the hurtles life has placed in her way and where her life is right now. The fact that I’m answering these questions is a testament to that.
Hi friends, welcome to another post. So this morning (the morning I’m starting to write this post, not the morning it’s posted), I was reading my brother-in-law’s blog post, and what struck me the most is how genuine his posts are. He writes purely for himself. It reminded me of what it was like when I first started my blog. I wrote for me, to get my thoughts out, and not particularly with anybody reading it in mind. Lately, I feel like my posts haven’t been that anymore. I’m constantly getting caught up in what the people who read these posts will think, if anyone will be bothered by what I write, if anyone will care at all about what I have to say. I go through phases of writing what I want and writing what I think people would want to hear. This isn’t exactly the nicest mindset to have whenever I write, because my flow isn’t as great when I’m struggling with what I think would be the best thing to say. So today, I’m just going to write. I’m going to talk about how I feel and not worry about if it'll come off a certain way or if it'll be relatable to anyone out there in the electronic void I send this off into.
First, let's talk about burnout. What is burnout, you may ask? Well, it's exactly as it sounds. You're burnt out. You're overworked and stressed out from being overworked. You're exhausted, mentally and physically, and you just feel like you can't accomplish anything. Things, specifically work, that you loved and once brought you so much joy now stress you out and the excitement you used to feel isn't there anymore. It doesn't happen right away, but slowly over time. Here's a great blog post on all the symptoms if you'd like to know more. Burnout is like any other mental illness, it can be treated. Sometimes, it just comes down to some serious self-care, and other times, therapy is a wonder.
Why are we talking about burnout? Well friends, let me tell you all about it. I'm beginning to get burnt out. Not from work, because I haven't worked in my chosen field yet, but school burnt out. I've been in college for nearly 6 years now in program that takes 4 years, and I've got at least another year (including practicum), possibly longer if things go the way I'd like them to go. But that's a long time to be in school, especially in a subject as difficult as social work. Not difficult in the sense that it's overly hard to understand, but it is complex. There's more to it than I initially thought. And that's coming straight out of a module all about quantitative research (don't worry, I don't get it either). I knew it would be hard when I got into it, but I didn't expect there to be so much. More on that later.
With burnout comes things like anxiety. Lately, I've been really anxious. Not just a little worried about things here and there. Like actually, legitimately anxious. Panic attacks and all. One that I had lately, that actually inspired this post, was particularly awful and made me realize that I'm on the way to being well and truly burnt out. I was doing an assignment for school, last minute because I didn't understand what the teacher wanted, watched the office hours recording so I could try and understand what he wanted and got no where. I sat there, staring at the question, not knowing what to do and began feeling overwhelmed. I started thinking about how awful I'm going to be as a social worker because if I can't figure out a simple question, how am I going to understand my clients and help them? I started panicking because I have so much left to do for school but what seems like no time to do it. For context on this train of thought, each module I have for one class is about 11 days long. In that 11 days, we have two to three assignments, class times, office hours, videos to watch, chapters to read in our textbook, and other academic articles to read. That's not counting the semester long group project or the other class I have on campus that has it's own assignments and readings. I know for some that doesn't seem like a lot, but for me it's too much.
I don't mean to complain, I really don't, I'm extremely grateful to be in the program I'm in and on my way to helping people because that's all I've wanted to do for years. But on this particular day, with this panic attack, I got overwhelmed with everything, both school wise and in my personal life, that I just felt like I couldn't do it anymore. I started crying and just felt like I couldn't be a social worker anymore, and I haven't even started yet. I kept telling myself that I picked the wrong degree and that I have no clue what I’m doing, that I was only going to fail. While crying and hyperventilating, I looked up deadlines for dropping out and when I could get a refund for this semester so I could just have a break from school. Thankfully, I had missed the deadline because it made me convince myself that I was doing this for a reason. I was drawn to social work for a reason. I'm doing this for a reason, no matter how hard it is for me to see when I get that overwhelmed.
I've had a few panic attacks since then, and I think I'm starting to understand when they happen. I'm overwhelmed, and when I'm overwhelmed I start thinking of all the things that make me overwhelmed, which makes me more overwhelmed. It's a vicious circle, one that results in crying and sometimes hyperventilating. I'll just say, I'm so unbelievably thankful for my husband. He'll pull me aside, give me a hug and let me cry because I can't help it, tell me it's all going to be alright, and let me tell him what was upsetting me. He'll do whatever he can to make sure I'm feeling better. I picked a good one guys.
Anxiety and burnout are tough. In the moment, it's hard for me to be rational and remember that everything is how it should be. It's hard to remember that I have a pretty great life and amazing opportunities ahead of me. It's just hard in general. School is great when I'm not feeling overwhelmed. Life in general is great. I'm thankful for everything I have going for me, even the anxiety, because it reminds me when I need to slow down. Obviously I need to figure it out and take better care of myself, but I'm getting there. Slowly but surely. Thanks for reading my rant, I promise next month I won't be complaining (lol). Until next time, friends 💕