I wanted to write a post to coincide with World MS Day. Now, I thought long and hard about this, because I don't want to be accused of using my sister's illness to promote my online shop. After some conversations and much soul searching, I decided that, since I have a platform here, I should be as honest and open as I can be about myself, my family, and my life.
While I was thinking about all of that, World MS Day came and went, on 31 May.
Here's the thing, though. MS is still around kicking people's asses, even if it's not actually MS Day, right now.
MS doesn't care about your pre-organised global day of awareness. It doesn't decide to take a day off because we decree that, for a single day a year, we will look at it a bit more closely. It also doesn't care that I am a slack-arse that, for love nor money, can't meet a blog deadline.Whatever day it is, MS just goes about the business of making life particularly shitty for a whole bunch of people walking around on the planet. And it does this regardless of what we puny humans decide to go on about amongst ourselves.
So, while this is a post about MS, it is not a post about World MS Day, which, as mentioned, has already been and gone.
Briefly, Multiple Sclerosis (MS) is a neuro-degenerative disease that strips the myelin from nerves of the central nervous system. It creates small scars, which slow down or block nerve transmission. Multiple Sclerosis means 'many scars', and how it affects an individual is partially determined by where in the brain their particular scars are found.
So, basically, it's a tricky little shit that affects people in so many different ways that it's difficult to pin down. It is often called the snowflake disease, because everybody presents so very differently. From total incapacitation, to making life just uncomfortable enough to know you've got it, MS is a bit of a shape-shifter.
I have an interest in seeing MS research improve because, as I alluded to above, my sister, Jo, has the disease. I have watched as she struggles to find the energy to keep up with her beloved grandchildren, or even just get out of bed on some days. If she does find the stamina to get vertical, her legs might decide that they are going to weigh roughly a tonne each for a while. You know, just to see how she reacts.
More often than not, she reacts with good humour and pragmatism. An attitude that leaves me in awe, and makes me consider how I would respond given the same circumstances.
She has decided that, in many ways, her illness is a gift. It brought into her life a large goofball named Charlie, who helps her maintain her balance, and provides a level of security and independence that she could otherwise not maintain.
With Charlie, and a newfound appreciation for living in the moment, Jo has finally found the motivation to travel Australia and fulfill some dreams. Before, there had always been plenty of time for that later. Now, she has a renewed understanding that scarcity of time is the only real scarcity that we encounter on this abundant planet.
Sure, she might have to put up with the burning she feels in various parts of her body and face, if MS decides to give that to her on any random day. Or she may have to deal with a rapid loss of cognitive function, that can make her feel like she's suddenly trying to speak a foreign language. Its not like she has a lot of choice. If her diagnosis is a gift, then these are the add-ons that she cannot refuse.
MS is not to be trifled with. It robs sufferers of so many things, things that most of us take for granted. Walking, talking, living without pain types of things. We are a civilization of some of the smartest monkeys the planet has ever seen. We have organised ourselves to create some astonishing things, and eradicate some biological scourges that plagued us in the past. I have no doubt that we are capable of kicking this one in the ass.We just need to look more closely at it, and, thusly informed, act swiftly on any new knowledge we find. Simple. Fortunately, some good people are trying to do just that, given the limited resources that every good cause seems to have.
So, if you are interested in the sorts of things that were organised for May 31, on MS Day, visit here.
If you are less interested in what happened last week, and want to see what is being done everyday, and maybe how you can help, visit here.
If you are interested in learning more about Jo's adventures around Australia with Charlie and MS, let me know here.