This week, we have a Malaysian vlogger, fibro fighter, and a great friend of mine, Roshan Kanesan! This man’s one of the biggest fibro fighters I know, and I’m honoured to have him on Positivity Lab! This interview’s actually one of the most heartfelt interviews to date- Roshan just tells his story as it is, and shares with us the amount of pain he went through in his journey.
It’s also worth noting that our schedules have been at odds with one another, so it’s great to finally have a slot where the both of us can actually do this interview. And I’m excited about this!
If you’re interested in seeing what’s he up to, how he goes through everyday, and how he deals with fibro on a daily basis, do follow him on his social media! His daily vlogs and updates will inspire you!
Roshan summarises up to why he vlogs in this short video! Give it a watch- it’ll give you a better understanding of him as well.
- In negative situations, look for positive takeaways or experiences.
- Surround yourself with supportive friends and family.
- Don’t solely focus on the negative aspect of situations- there are silver linings in these situations.
- Prioritise your health (this includes sleep, and diet).
- Go at your own pace. Ditch the ego. Be patient with yourself. Just keep moving forward.
- Be aware of your physical capabilities and limits, and cut yourself slack when needed.
- When presented with a problem, find ways to resolve it.
- Use your limited resources well.
- In dire circumstance, keep pressing on, and keep moving forward. The journey will be worth it.
- Be grateful to the supportive people around you.
- Be supportive to others who are going through a tough period in their lives.
- Don’t procrastinate, and doubt your capabilities when taking on a new challenge. Take that challenge head on!
- #KMF (Keep Moving Forward)
Let’s dive right in!
Hey Roshan, thank you so much for taking your time out for this interview! Appreciate it buddy. Before we dive right in to the interview itself, would you mind giving a brief introduction about yourself to the readers?
First and foremost, my name is Roshan Kanesan. I also go by the nickname arkay.
I’m a 26 year old, Malaysian, barista in training, Vlogger in progress, full time fibrofighter and I’m finally about to finish university (Bachelor of Business and Commerce, majoring in Finance), hopefully! *laughs*
You have a pacemaker installed within you. Would you mind telling us more about it?
Well that’s a really long story, and it starts all the way back in 1990, the year I was born.
I was born with what I’ve been told is referred to as Holt Syndrome which entails upper limb deformations and heart defects. So with regards to my heart, I was born a hole in my heart, some damaged valves & a natural primary pacemaker, the SA node, that wasn’t functioning well.
Now the hole was patched up nicely in Melbourne at the Royal Children’s Hospital thanks to some amazing doctors when I was 6 months old & the damaged valves repaired as best as possible, thought they still leak a little but nothing significant.
However the SA Node takes on a different story. So the SA Node is responsible for pacing your heart, i.e. Making your heart beat, and in the case with mine, it wasn’t very good at its job. My heart beat was lower than average, but not in the healthy way! *laughs*
My doctors didn’t want to intervene just yet with an artificial pacemaker as my heart did well to respond to activity- in that whenever I exercised my heart beat went up in response, whereas my resting heart beat wasn’t desirable. My docs didn’t want to burden me wth another surgery and an artificial pacemaker until absolutely necessary.
That day came on December 24th of 2005 when my resting heartbeat started dipping too low, going as low as 25-35 while sleeping, if I remember correctly, and that’s when the intervention happened and I became part machine! *laughs*
With regards to your heart, were there struggles or obstacles you had to face when you were growing up, knowing your heart isn’t in the best condition?
Yes definitely, but not as much as an obstacle as growing up with my “unique” thumbs (he is two-thumbed on the right!) & heart condition. That made it very difficult to fit in with other kids, either being unable to keep up with them physical and always having to be careful about my health, or not fitting in because of my hands and having kids tease me because of them, of course not all kids, just some, you know, the ignorant & rotten ones.
But while they were few, they did have their impact, positive and negative. They made me stronger and tougher, but also started this feeling of non-belonging that I still tend to feel and deal with till today. Thankfully I made some good friends, and they really helped me out. Also, after primary school, my hands suddenly became cool, so yeah, that was a nice change! *laughs*
So you were teased as a child, and this impacted you positively. Out of curiosity, what were some of the positive impacts these kids have on you? Aside from being stronger and tougher?
I guess they challenged me to be more resilient- I guess that’s similar to being stronger and tougher, but that’s what it did. I’m not sure how to further explain it! *laughs*
I guess it also helped me to learn to focus on the good things in my life versus the bad- that doesn’t mean ignoring the bad completely, but being aware of the bad without letting it affect me and learning from it whenever possible.
You also suffer from fibromyalgia. How did you feel when you found out about it?
Would you believe it if I told you I started laughing?
The lead up to my official fibromyalgia diagnosis took sometime, about 2 years actually.
I was in the Mahindra United World College in India (MUWCI) at the time this new arc started. A combination of trying to keep up with my peers sociably, who didn’t have the health problems I have, and keeping up with IB (International Baccalaureate) meant a chronic lack of sleep. Coupled with my self-prescribed terrible nutrition of instant noodles and shishaing daily, ta-da, overtime I burnt myself out and had to drop out of MUWCI 6 months before it ended. 18 months down the drain and thus the start of this new phase of my life, chronic illness.
In the lead up to the diagnosis, I flew back and forth from India to KL many times in 2009, trying to solve these issue of perpetual fatigue and fog. There was a surgery or two to help me “breathe better”, because we found some nasal issues. The surgeries failed to provide results, and finally in October we found out that I was suffering from mycoplasma pneumonia. We treated it but it was too late, I was soon diagnosed with CFS (Chronic fatigue syndrome) and told to drop out. At this point I was already way behind in my course and probably would’ve failed if I kept going. The school tried to help out and accommodate, but after another month there to see how things panned out, I gave up. I was just way too tired.
I officially left in February 2010, after ensuring that I would at least celebrate my 20th Birthday there.
That was definitely one of the worse days in my life: leaving MUWCI and my friends for home, 6 months before the end, feeling like a failure- ashamed, broken and depressed.
I took some months to feel sorry for myself and then started a new course, CPU, which is where I met you, Ben!
About a year after that, around my 21st Birthday, I was taking way too long to recover from an ankle injury incurred 3 months before. I saw my doctor, told him about a few more pains I was having. He got suspicious, inspected a few other tender points on my body and an excruciating blood test or two later, we excluded the other reasons for my pains and nerve sensitivity and were left with, yes you guessed it, Fibromyalgia.
So yeah, when I was first told that I most probably have Fibromyalgia, I started laughing, i really didn’t think my health could get worse, but it did. But I guess too be fair, it’s not like anything changed, it was just that we finally labeled it more accurately.
So yea, it’s been a good 7 years of this, lots of ups and certainly lots of downs, but overall I’ve definitely made progress. I’m just a lot slower and behind most of my peers, but that’s only a concern for my ego, what’s truly important is that I Keep Moving Forward.
When you started your journey as a fibro fighter, were there things (your mindset or the way you act) you had to change about yourself?
Yes definitely. I had to become more aware of my reduced capabilities, and I had to start giving myself more slack for not being able to do what my peers were doing.
I had to make my health my main focus, change my lifestyle, start eating better, experimenting with different combinations of nutritions and lifestyles additions or reductions to find what works and what doesn’t, which has really panned out over the last year, as in I’ve found ways to better mitigate and minimise my fatigue, fog and pain.
But the biggest thing had to be the “cutting myself more slack”. I used to be very competitive and ambitious, okay I still am, but now I have to be sustainably ambitious. To push myself but to also know when to stop, which took a very long time to deal with. Each time I push too hard, the fibromyalgia would flare up badly and it would take me back a few steps from where I already was.
I repeated this many, many times over the 7 years; actually I still do, but I’m way more cautious about it now!
I’ve had to learn to be more cautious and sustainable with my energy, not to overpromise and to remember that I have limits- limits that i should always try to expand yes, but to do so over time and be patient with myself. This can get difficult when I see others around me moving way ahead, or onto the next stages of their lives and such.
Also, I’ve had to learn how be more self-centred: in that to take care of myself, by learning to say ‘no’, and not trying to please everyone around me, especially with the limitation on my personal resources, whether it be mental, physical or emotional resources.
I think that’s it. If i think of anything else i’ll address it in my blog. (The more reason to why you should follow his vlog!)
On some days, you suffer terribly painful fibro flares. How does a fibro fighter like you keep on pushing on during these days? What are some of the thoughts and mindset you have?
Ok, this could get potentially dark for a bit, but stay with me here.
Hope, hope that eventually I’d be free of my these health issues or that I’d m minimise their impact so much so that they’re barely felt, or easily dealt with.
Also, without getting too sappy here, my friends and family. Ok wait, this needs to be broken down into 2 phases, the initial phase and now.
During the early days, up until maybe a year or so ago, things often got very hard, and I felt like I was having more bad days than good days overall.
Sure some periods of time were better, but there’d also be a time when things got seriously bad and the flare ups came back with a vengeance. There were many times I felt like giving up, quitting, ending it. Like life wasn’t worth it anymore but I couldn’t do that to them, to the people I love.
They’re probably the biggest reason why I’m still here and why I kept on going, especially early on and even more during the times when I felt all hope was lost, and that I could never get better- I would be subjected to living with the the fatigue, fog and pain forever. For a while, I kept on going just for them because I didn’t want to hurt them.
Nowadays it’s a lot better, yes I do still have my bad days- I had one just last week! *laughs* But I now know for a fact that they’ll pass and that I will be able to deal with them. I dealt with much worse before, particularly in 2010, 2012 and 2013.
On top of that, O’m also a lot better at dealing with the flare ups now. My protocols, nutrition and lifestyle experiments and changes have helped significantly here, particularly nutrition.
Because of these protocols, I haven’t had a Level 10 (worst) flare up/ bad day in a long time.
I would go into what I’ve done and currently do, but that’s another long conversation! Maybe another time, or check out my Instagram hashtag #arkaysLog, wait, or was it #arkayNutrition? It’s either one of those.
I noticed you’ve mentioned twice about the support you’ve received from your family and friends. How important have their support been to your journey so far?
It has been crucial, particular my parents. Without their care, support and patience I would not be here talking to you right now. I became a heavier weight on their shoulders after 2009, emotionally and financially, but they carried that weight, even when I couldn’t help them carry that weight at all. I will never be able to thank them enough for that- they’re the reason I’ve got this far.
Without my family, including my close relatives and best friends, I would not have had the motivation to keep fighting, and to KMF. Sorry, I meant keep moving forward.
So they played a vital role in helping you to fight and move forward in a sense?
Definitely, they were the crucial motivation when things were really dark to keep on going and not give up.
That eventually lead to hope, hope that things could get better for me and then started moving forward because I wanted to live and not because I wanted to live for others.
You also do vlogs. What inspired you to start your own channel and become a vlogger?
Oh wow, this is quite complicated, because there were many reasons and some overlap, some are a little more abstract, in that I know what they are, but I don’t feel like I can communicate it well enough through writing. I’ll give it a shot. If this explanation doesn’t pan out well, then it’ll serve as a motivation to my upcoming vlog, “Why I Vlog”, and get it linked here! *laughs*
So, before the vlog i had a blog, arkaysthoughts.com. I enjoyed writing, but with writing comes the possibility of being taken out of context, because of how someone reads your words. I then started spending more time worrying and editing my writing to reduce the possibility of being taken out of context, which got tiring and eventually I stopped writing.
Then there was Instagram, which eventually became a mini-blog, where I would put my thoughts and eventually started posting up daily updates of the things I did to fight fibro and all that. It became a way to share with people the fibro fight: the things I experimented with, while showing people that I’m not defined by it by posting up pictures of my life, which is what Instagram is for.
Additionally, I would’ve started vlogging earlier, but I just never thought I could do it. A few Casey Neistat vlogs encouraged me that I could, and also made it clear that the gear didn’t matter. I could start with whatever I had, which at the time was an iPhone 5S!
On top of all this, in Monash University (the Malaysian branch), I was taking a unit called TV Studies, and Film Studies the year before, which also seemed to make me want to start getting on YouTube.
Moreover, I had just started The Young Turks (TYT) on YouTube, which sparked this idea of getting on YouTube by doing a weekly show that combined elements of John Oliver’s Last Week Tonight with that of the TYT format and casualness, if that makes any sense.
However, i eventually set that idea on the back burner in favour of an even more casual Casey Neistat-esque vlog style that would marry my previous blog, arkaysthoughts, with how i use Instagram with regards to my Fibromyalgia and life.
I feel this isn’t too great of an explanation, so I’ll be sure to vlog about it soon! But, in a nutshell, I guess my inspiration came from a combination of curiosity, Jon Stewart, John Oliver, TYT, Casey Neistat, my TV Studies unit, and a desire to share my thoughts and fibrofight, for lack of a better word.
So essentially what I’m trying to do is to show my life in different angles: as a fibrofighter, a son, a brother, a nephew, a friend, and also talk about things that I care about, whether it’s about politics, sports, movies or general thoughts.
Actually, now that I think about it, a big inspiration came from Richard Branson’s book and quote “Screw it, Let’s Do It” coupled with a few things about vlogging that Casey said, which I can’t remember right now. These 2 factors are what inspired me to stop procrastinating and doubting myself about vlogging and get started at it.
If you could travel back time, are there things you would like change your past self?
I’ve thought about this a lot, and I mean a lot, and the answer is no. While the last few years have been, tough, to say the least, and it would be tempting to rewrite them so that I never got sick if i had the chance. Yet, they have been important years. Years that have taught me a lot, shown me other aspects of myself that I never thought I had and value very much now, and have also humbled me, which was probably necessary, though I don’t think this much humbling was needed! *laughs*
Lastly, are there any positive experiences or uplifting thoughts you’d like to share with the readers?
Alright, I don’t have any positive experiences on hand right now, but I’ve got an old, but highly relevant thought that I wrote about in an old blog post of mine, ‘Overall Progress‘.
I’ll quote it here, with few edits here and there.
“Let me start with this line in The Great Gatsby that resonates with me quite often:
“My life has got to be like this, it’s got to keep going up.”
I agree with Gatsby, but I don’t believe in a ‘Life Line’ that is constant and straight. Life is full of ups and downs which need to be integrated into the ‘Life Line’ that reflect our respective lives.
Progress isn’t a straight line up, it’s the line of best fit based on all the ups and down we’ve faced in our lives. As long as the ‘Life Line’ formed, from the line of best fit, shows an upward trajectory/trend/pattern, then we’re on a pretty good overall track, which is based upon what we place value on in our lives, whether it is health, career or family life, amongst others.”
So yeah, overall progress isn’t linear, sometimes we’re going to have a setback or ten before we finally make take that step forward, and vice versa, there are times we’ll be on a roll and then it all stops & regresses for whatever reason. I feel what’s important is that we Keep Moving Forward.
I’ll leave it here with this, a quote from another old blog post ‘The Ideal Route Isn’t the Only Route‘.
“Life isn’t a sprint, it’s a marathon, it isn’t a battle but a war.”
Thanks so much for your time Roshan! Hoping your exams have went well, and looking forward to seeing you graduate buddy! Keep up the good fight, fibro fighter. Keep moving forward, and I’m excited to see where life brings you to.
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Stay happy, stay positive. Live this week positively!