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Wise Words - Breaking Bad Style

25 October 2015

I don’t watch a lot of TV, but when I heard RJ Mitte was visiting Australia for some public speaking engagements on ‘Overcoming Adversity’, I knew I had to get there. RJ has a starring role in the cult TV show ‘Breaking Bad’ (which I’ve admittedly never seen!) but he’s also a passionate disability advocate. He lives with Cerebral Palsy, but lives with it the best he can, and importantly (to me) with a positive, ‘can-do’ (albeit with a modification or two!) attitude. Now being a few years into my diagnosis, I’ve slowly realised that to help me cope with MS, I need to surround myself with positive people, not only those who are living with MS, but also my wider circle of friends. Throughout his 1-hour conversation, I learnt that RJ also shares this need. An overview of the night is found here on the Wheeler Centre site:

http://www.wheelercentre.com/notes/what-we-learnt-from-rj-mitte

What I like about RJ is that he hasn’t let disability stop him from achieving his goals, and he has also used his ‘fame’ to help his community. He shared there’s no denying he’s been met with many challenges, (as all people who are living MS do, with varying levels) but he said it’s how you handle these challenges that is in your control.  I was able to ask RJ a question at the Q & A session, which was: “I've recently started blogging with a positive approach to disability but I've found many in my own community aren’t that receptive to the positive posts, instead preferring mainly negative experiences to be shared. Do you find your positive approach to disability generates any negative feedback from your own community?”.

As outlined in the overview of the night above, RJ’s answer to this question was that “People with disabilities are sometimes encouraged to focus only on their struggles. That's limiting.”  He spent a few minutes answering the question, and I felt real truth from his words. What I took away from this is that focusing only on our struggles can be personally limiting, limiting to those around us, and also to our community as a whole. RJ shared that he has had some negative feedback about his positive approach, particularly from the Cerebral Palsy community itself, but he also acknowledged that he has the right to adopt this positive attitude after overcoming (and still dealing with overcoming) issues of mobility, speech, and fighting for his independence. He commented that, just as he has, I shouldn’t let others dictate the story I am telling, because it is my story, not theirs.

When I was first diagnosed with MS I found it really challenging to find blogs and content that weren’t solely focused on negative experiences of MS. While no one is denying that these negative experiences are all too common (unfortunately) and they do need to be shared, the lack of positivity in online content initially left me with fears and expectations that MS was going to be the end of me. I’m not proposing that we hide away and only share our positive experiences, but it leaves me wondering why we, as an MS community, seem more encouraging of sharing negative experiences opposed to positive ones. Are we afraid of others judging us with our positive attitudes? Are we worried that others will undermine the condition if those living with MS adopt positive attitudes? While I’ve found the ‘hidden gems’ of positivity among bloggers, and the Uninterrupted platform has definitely been a big part of this, I think people are often hesitant to share their positive experiences of living with MS, and I wonder why this is.

RJ’s final piece of advice to me was to “keep posting about the positive experiences of living with a disability, because these insights are at least as important to share and publicise.” (he also said “do it to ruin their day”, but that’s not my style!!). So in the posts that I’ve hesitated to hit ‘submit’ on, I now feel a little more comfortable that it’s actually OK to have a positive approach to living with MS. I realise that, while it’s important to share my negative experiences with MS, I’ll no longer feel guilty or hesitant about sharing the positive ones as well, thanks to an insightful night in the company of RJ Mitte.

Comments (10)

Wise words indeed! I believe that the moment we start filtering ourselves to appease others, is the moment we stop being true to our story. Thats what we are hear to tell, our story, about our journey. There will be those who relate to our mindset, and then those who don't. We can only present what we have learnt and know, they can only take from it what they allow themselves too. Feedback from my direct MS community is that if the message is clear, i.e.: it encompasses the negative with the positive outcome, they are more likely to be accepting of the intended message. I have been told that it is daunting when someone presents their positive attitude like they never experienced the negative moments. For some it is hard to grasp how the story teller got to that point in their life, when all they do is make it sound like a positive experience. Without the negative part, we would not be so profoundly aware of the positive part. Light and shade. Ying and Yang. Can't have one without the other. Celebrate one, while acknowledging the other.

Thanks for your own wise words on the topic Amber :) I think the interesting distinction with MS is that it really is a condition that is totally different for each and every person. This can be difficult when navigating the balance of positive and negative experiences I think. Thanks again!

Wise words indeed Sam, and very wise words too, Amber. For me, MS symptoms have been a series of straws, each of which alone may have been enough to have broken the camel's back. Their cumulative effect has been quite a challenge! As Amber has illuminated, context is everything, and I was wondering if in future posts you may share something of your MS symptomology Sam, and how you stay positive in the face of your challenges. I think this is one area where the MS literature is lacking - the best mental approach for surviving and thriving in the face of disabling symptoms. Good on you for raising the issue Sam.

Thanks Lawrie. Yes, I plan on sharing some of my MS symptoms in a future post to give people the bigger picture of where I'm at. In saying that, whatever my symptoms, I still think I'll always have this 'glass half full' approach to MS... maybe that's my stubbornness though!

Thanks Sam - this post really resonates for me. I love your positive attitude and, for me, what you heard from RJ rings really true, too. I suspect anyone who lives with a chronic illness or disability has times when we let it get us down, but it certainly doesn't make the challenges any smaller to focus on them in a negative way. I love the concept of taking control by choosing how we deal with them, though. Now that's a constructive approach in my books! As it turns out, the blog I'm thinking about posting next is a bit related - looking at my experience of how I try to overcome hurdles.

Thanks TUO :) I share the same view, in that, focusing on challenges in a negative way won't make them any smaller! Looking forward to your next blog :)

RJ Mitte certainly is an inspiring young man. Loved him in Breaking Bad. Certainly not one to let his disability get in the way of his dreams. Your positive attitude is something we can all aspire to Samuel. :) I love reading your positive blogs.

Hi Sam, You might be interested in this story about a performance in Melbourne by a young gay chap with cerebral palsy from Geelong....."Someone like Thomas Banks". The blurb says, "The 24 year old performer/writer wanted to present a show which shared his struggles growing up on a farm outside Geelong and challenged people’s perceptions about disability and sexuality." Here's the link to the story... http://www.heraldsun.com.au/leader/north/someone-like-thomas-banks-challenges-perceptions-of-sexuality-and-disability-at-fortyfivedownstairs/news-story/fcc800bbe88a84d01db1027514f1760c Regards Andrew G.