For better or for worse, social media has become and integral part of our lives. Companies such as Facebook and Twitter control our lives (whether you have signed up to them or not, but that’s another discussion). Dictating what news we get, what opinions we hear, what we believe, and, to an extent, determining our actions. Because – and let’s be serious here, there aren’t that many exceptions to this rule – should someone start a challenge of some sorts on these social networks nowadays, and that challenge goes viral, you’d be a social pariah not to participate. And age or education level have nothing to do with whether you participate or not.
So, while the whole world had recently been going crazy with that #10YearChallenge on Facebook, I chose not to partake. Well, not so much chose but simply did not. I didn’t care about who started the challenge, I didn’t care about looking silly (I do that on a daily basis, and make fun of myself too), or the incentives behind the challenge. I mean, who cares if Facebook was testing a face recognition algorithm? (Seriously, they still don’t have an algorithm that predicts how you age? Apple seems to have one of those…)
No, I did not participate in part because it would be hard to find a photo of me from a decade ago (I really have an aversion to photographs). But mainly I did not participate because it would be too much effort.
I have to say this again. I am not a lazy bum. Not most of the time. Definitely not when it comes to being silly. Or doing stupid things without thinking, for that matter. The MS robs me of my energy. On many days I am drained the moment I wake up. At the latest by the time I get out of the shower. The rest of my day is one continuous battle to get things done (if i remember them, and thanks to my phone I can create perpetually growing to-do lists). Until I get to go to bed again, assuming I can fall asleep and not be in too much pain to do so or have a million things rampaging through my head, or fall asleep on the couch.
And this is just one of those things that have changed since my diagnosis at the beginning of 2009. So, let’s see how my life has changed over the past decade, because of MS.
I have to stress at this point that MS is a fingerprint disease. Each patient’s case is unique. I consider myself to have been fortunate in having such a slow disease progression.
Over the past decade I have lost part of my vision, part of my cognitive capacity, balance, fine motor skills, weakened significantly (even more than I would have by the natural degradation of my body – I think).
However, I have also gained a lot over the past decade. Especially over the past four to five years. I have become more self aware, much more logical, much more empathetic, more calculated, I’d like to believe wiser, calmer (although I know my patience and threshold for stupidity has decreased), more sarcastic, funnier (ahem), more determined, and stronger all-round. Because, with a chronic illness such as MS if you are not all of the above, and much more that for the life of me I can not think right now but I am sure will come to me by tomorrow, it would be as if you are surrendering. And I am really not the surrendering kind. I understand my shortcoming, and keep on working with them. Remember, you work with what you have, you adjust, refocus, you do not work with what you wish you had and strive to achieve something that would be so much harder to achieve with the tools you have available and in the way prescribed by others.
If I could offer one word of advice (phrase more like it) to everyone, not just MS patients, from what I found out over the past decade, it is this: Make your own path!
I have not included any photos of me changing over the past decade, because, aversion to photographs!
It’s National Multiple Sclerosis Awareness Month in the US. Many thanks to the brave Selma Blair for raising awareness about MS. Go learn more about this disease that affects an estimated one million people in the US alone.